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CHAPTER ONE – INTRODUCTION
1. 0. Introduction
This study aims to investigate the problems of adherence to physiotherapy for adults
with cystic fibrosis (CF), and to develop an intervention in the form of a selfmanagement physiotherapy programme (SMPP) to improve the ability to adhere to
physiotherapy treatment and thereby postulate a new and improved model of
physiotherapy clinical practice. Physiotherapy is an integral part of the daily treatment
and management for CF (Association of Chartered Physiotherapists in Cystic Fibrosis
(ACPCF)/CF Trust, 2011; Pryor et al., 2010) as it aims to keep the airways clear of
secretions, encourages exercise/activity to keep as fit and as healthy possible,
promotes good posture in order to reduce the impact of osteoporosis and the
development of adverse respiratory mechanics in the chest wall (kypho-scoliosis) and
reduces the risk of musculo-skeletal joint pain. Physiotherapy, which is one
component of the complex and time consuming treatment regimens for CF, provides
challenges in balancing the optimal treatment needed to maintain a good health status
with the burden of regular daily treatment, which may affect a persons quality of life
(QoL) and make adherence to treatment difficult (Christian, 2007; Daniels, 2010;
Kettler, Sawyer, Winefield, & Greville, 2002). Of all of the treatment regimens
carried out by people with CF, daily physiotherapy is the least liked (Daniels, 2010;
Ireland, 2003; White, Stiller, & Haensal, 2007; Zindani, Streetman, Streetman, &
Nasr, 2006) and has the lowest levels of adherence which can result an increased
frequency of chest infections, pharmacological costs and hospitalisation in addition to
a reduced quality of life (QoL). Physiotherapy treatment has been perceived by some
people with CF as being ineffective, time consuming and its clinical benefits not
always discernable (Llorente, Bousono, & Martin, 2008; Myers & Horn, 2006).
Whilst highlighting adherence as a significant issue, the CF literature does not provide
explanations or strategies to address this problem because studies into adherence to
physiotherapy for adults with CF are in their infancy, as it is only in recent years that
people with CF are living longer into adulthood.
1. 1 Cystic Fibrosis
CF is a complex multi-system life threatening disease with a poor prognosis and no
cure. It is the most common recessively inherited genetic disease of Caucasian
populations, with a carrier rate of 1 in 25 and an incidence of 1 in 2,500 live births
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(CF Trust, 2011a). There are approximately 9,000 people with CF (CF Trust, 2011a)
in the UK. Life expectancy is improving as there was a median predicted survival of
only 16 years in the 1970’s, where as for a child born in the 1990’s the median
survival was predicted to be greater than 40 years (Elborn, Shale, & Britton, 1991;
Yankaskas, Marshall, Sufian, Simon, & Rodman, 2004) and for a child born now this
life expectancy is likely to be into the fifth decade (CF Trust, 2011a; Dodge, Lewis,
Stanton, & Wilsher, 2007). The overall figures for the increased number of people
with CF surviving into and past their third and fourth decades masks wide variations
in survival rates across and within countries, and that women are more likely to die at
a younger age than men, for reasons that are unclear (CF Trust, 2011a; Patterson,
Wall, Berge, & Milla, 2008)
Dorothy Anderson first accurately described the disease in 1938 and at that stage 70%
of infants diagnosed with CF died in the first year of life (Andersen, 1938). By the
1980’s inhaled antibiotics helped to prolong life expectancy (Hodson, Panketh, &
Batton, 1984), in 1984 Tsui discovered the CF gene (Tsui, 1985) paving the way for
a future cure, in 1988 the first bilateral lung transplant for CF took place (Ramirez et
al., 1992) and the first heart and lung transplant in 1985 (Yacoub et al., 1990). Current
research is investigating gene therapy as a means of controlling the defective
mechanism (CF Trust, 2011a).
1. 1. 1. Presentation
CF is a disease of exocrine gland function that involves multiple organ systems but
chiefly results in chronic respiratory infections, pancreatic enzyme insufficiency and
associated complications if untreated (CF Trust, 2001). The clinical presentation, age
at diagnosis, severity of symptoms and rate of disease progression in the organs
involved vary widely. Diagnosis is based on typical pulmonary and gastro-intestinal
(GI) tract manifestations, a family history and positive sweat chloride test results and
genotyping (CF Trust, 2011a; Walters & Mehta, 2007). Newborn screening for CF is
universally offered in the UK (Price, 2006). The majority present in early childhood
with respiratory tract infections which are slow to clear, or persistent, intestinal
malabsorption and failure to thrive (Lee & Southern, 2007). Pulmonary involvement
is progressive: beginning as bronchiolitis, bronchitis and then bronchiectasis which
leads to corpulmonale, end-stage lung disease and death. Severity of pulmonary
disease determines prognosis and ultimate outcome (Kolbe. 2007).
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1. 1. 2. Patho-Physiology
CF is a lethal, autosomal recessive, multisystem disease primarily affecting the organs
of epithelial origin (Coakley & Boucher, 2007) with the respiratory system being the
major cause for morbity and mortality. It is the result of mutations affecting the gene
which encodes for a chloride channel known as the cystic fibrosis transmembrane
conductance regulator (CFTR) and is essential for the regulation of salt and water
movements across cell membranes (CF Trust, 2001). The gene responsible for CF is
localised to 7q31.2 in the long arm of chromosome 7. It encodes a membraneassociated protein called the cystic fibrosis transmembrane conductance regulator
(CFTR) (Coakley & Boucher, 2007). To date 1500 mutations have been identified
with the most common gene mutation, ΔF508, occurring in about 70% of the CF
population (Castellani et al., 2008; Kolbe, 2007). Because the CFTR mutations have
poor penetration the genotype does not predict the pattern or severity of disease.
The CFTR protein has different roles in different types of epithelial cells. Normally,
this protein allows chloride ions to exit the mucus producing cells. CFTR is anchored
to the outer membrane of epithelial cells in the sweat glands, lungs, pancreas and
other affected organs. The protein spans the cell membrane and acts as a channel
connecting the inner part of the cell (cytoplasm) to the surrounding fluid in order to
facilitate the movement of chloride across the cell membrane (Walters & Mehta,
2007). When the CFTR protein does not work chloride is trapped inside and outside
of the cell membrane (Kolbe, 2007). Because chloride is negatively charged it creates
a difference in the electrical potential inside and outside the cell causing cations to
cross into the cell. Sodium is the most common cation in the extracellular space and
the combination of sodium and chloride creates salt which is lost in high amounts in
the sweat of individuals with CF (Walters & Mehta, 2007). This lost salt forms the
basis for the sweat test which is used to diagnose CF.
Because the chloride ions are blocked from exiting the mucus producing cells the
mucus has increased viscosity and obstructs the various pathways (CF Trust, 2001).
This obstructive process also prevents bacteria from being cleared from the cells and
thereby increases the potential for infection. Nearly all exocrine glands are affected in
varying distribution and degrees of severity depending on the extent of the CFTR
mutation (Coakley & Boucher, 2007). The chief manifestations of CF are found
primarily in the respiratory and gastro-intestinal systems and to a lesser extent in the
musculo-skeletal and urinary tract systems.
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1. 1. 3. Manifestations of Cystic Fibrosis
Although CF chiefly affects the respiratory and GI systems for the purposes of this
study only a details of it manifestations in the respiratory system are outlined below:
Respiratory
The disease is characterised by abnormally viscid purulent secretions, chronic
infection especially by Staphylococcus aureus and Pseudomonas aeruginosa, recurrent
infective exacerbations, progressive damage to airways and parenchyma, and
worsening airflow obstruction that eventually leads to respiratory failure and death
(CF Trust, 2001; Wallis, 2007). Although the lungs are generally histologically
normal at birth, most commonly pulmonary disease develops in infancy or early
childhood. Mucus plugging and chronic bacterial infection, accompanied by a
pronounced inflammatory response, damage the airways and ultimately lead to
bronchiectasis and respiratory insufficiency (Gibson et al., 2003; Balfour-Lynn &
Elborn, 2007). The respiratory manifestations of CF are characterised by episodic
infections leading to progressive decline in pulmonary function. Pulmonary damage is
initiated by diffuse obstruction in the small airways caused by abnormally thick
mucus secretions (Kolbe, 2007). Bronchiolitis and mucopurulent plugging of the
airways occur secondary to obstruction and infection. As the disease progresses the
bronchial airways narrow due to inflammatory changes, making airway clearance an
increasingly difficult daily procedure (Chimiel, Berger, & Konstan, 2002;Gibson et
al., 2003). With increasing obstruction of the airways exhalation becomes more
difficult resulting in the alveoli expanding and air trapping occurring (CF Trust,
2001). Much of the pulmonary damage may be caused by inflammation secondary to
the release of proteases by neutrophils in the airways (Kolbe, 2007). This damaging
inflammatory process results in the progressive development of chronic hypoxemia
which leads to muscular hypertrophy of the pulmonary arteries, pulmonary
hypertension, right ventricular hypertrophy which progresses to raised pulmonary
arterial pressure, right sided heart failure and ultimately death.
1. 2. Treatment for Cystic Fibrosis
The aim of treatment is to improve nutritional status, prevent or slow down the
decline in pulmonary function and to aim for as “normal” a life as possible with the
best quality (Daniels, 2010). Due to its complex nature CF requires an aggressive
multi-system approach to treatment.
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Management of adults with CF should be comprehensive and multi-disciplinary with
an individualised approach to each person’s needs. The aim of treatment is to
minimise or delay the onset of inflammatory changes, delay the decline in organ
function, maintain a good nutritional state, increase life expectancy, improve/
maintain exercise tolerance, improve QoL and reduce healthcare costs (Hodson,
Geddes, & Bush, 2007).
Treatment of CF is preventative, complex, time consuming, expensive and in some
cases is not without significant adverse effects. CF treatment can also have a major
impact on a person’s QoL due to the accumulation of a variety of necessary and
burdensome daily treatments particularly for those with advanced disease (Abbott,
Havermas, & Hart, 2009; Kettler et al., 2002; Kolbe, 2007; Sawicki, Sellers, &
Robinson, 2009). Currently the main focus of treatment are the respiratory and GI
systems with antibiotics proving one of the mainstays of treatment.
The main cause of mortality for people with CF is respiratory failure, which is a
consequence of progressive lung damage. The airways of people with CF are
susceptible to initial colonisation and subsequent infection by organisms that are not
adequately cleared (Balfour-Lynn & Elborn, 2007). The most common bacteria
causing chronic infection in adults is Pseudomonas aeruginosa and, based on its
purported role in airway inflammation and damage, anti-psuedomonal antibiotics are
the treatment of choice. Antibiotic therapy is directed at preventing, eradicating, or
controlling respiratory infections. The prompt use of effective antibiotics in these
situations has been a major reason for the decreased respiratory morbidity and
increased longevity seen over the last several decades (CF Trust, 2011a). As this
study focuses on the impact which adhering to physiotherapy has on the respiratory
system only a brief outline of the complex treatment regimen for the respiratory
system for adults is outlined below:
Treatment of respiratory problems can involve the following:





Inhaled bronchodilators to dilate the airways facilitating airway clearance
Antibiotics taken orally, inhaled or intravenously in cases of more severe
infections
Steroids to reduce the impact of the inflammatory process whereby the airways
become swollen. Steroid nasal drops and sprays are used to treat nasal polyps
Non-steriodal anti-inflammatory drugs (NSAIDs) e.g. ibuprofen
Mucolytics, e. g. inhaled enzyme RhDNase, are used to reduce the viscosity of
respiratory secretions and facilitate chest clearance
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
Osmotics e.g. hypertonic sodium chloride 7%

In advanced disease oxygen, delivered through a variety of devices and systems, is
given for hypoxemia
Non-invasive ventilation to aid gaseous exchange and chest clearance.
Physiotherapy - Airway clearance & exercise


Heart/Lung and Lung Transplantation
Transplantation is used in instances of end stage organ failure, with either a heart and
lung transplant being undertaken or a single/double lung transplantation. In recent
years there has been a move to bilateral sequential lung transplants. Five year survival
rates for adult lung transplantation is 78 ± 5% (Ilhan et al., 2012) and increasing but
availability of donors is problematical (Aurora, Gyi, & Carby, 2007).
Other Pharmacological Treatments
Treatment for the digestive system focuses on pancreatic enzymes which help to
digest fats and proteins and increase absorption of vitamins. Nutritional supplements
are also given to compensate for poor digestion and give additional energy and
nutrients. Without treatment mal-absorption would result in poor nutrition and a low
immunity precipitating an increased propensity for debilitating chest infections. For
CF Bone Disease bisphosphonates are implemented in order to help maintain bone
density and reduce the risk of fractures while vaccinations, particularly for flu, are
important as people with CF as they are susceptible to complications resulting from
infection.
1. 3. Physiotherapy for Cystic Fibrosis
Physiotherapy is the use of physical approaches to promote, maintain and restore
physical, psychological and social well-being, taking account of variations in health
status (Chartered Society of Physiotherapy (CSP), 2010). Physiotherapy is sciencebased and committed to extending, evaluating and reviewing the evidence that
underpins and informs its clinical practice. The role of the physiotherapist in the
treatment and management of CF is that of clinician, educator, manager and
researcher. These factors are particularly relevant in CF where the specialist skills of a
respiratory physiotherapist, in terms of the treatment and management of respiratory
problems, the promotion of a healthy life style through exercise/activity and the
encouragement of good posture, are needed to deliver high standards of care and
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effective outcomes (ACPCF/CF Trust, 2011; International Physiotherapy Group for
Cystic Fibrosis (IPGCF), 2009).
At the time of the study people with CF were recommended to do daily chest
physiotherapy in some form to either clear their chests or check that their chests were
clear and to undertake exercise to maintain and promote a healthy life style
(ACPCF/CF Trust, 2002). In the past the delivery of chest physiotherapy was
dependent upon the assistance of another person and the use of gravity dependent
postural drainage positions to facilitate sputum clearance (van der Schans, Prasad, &
Main, 2009). Recent UK guidance suggests that chest physiotherapy facilitates
sputum clearance by various ACTs or by using mechanical devices, or both
(ACPCF/CF Trust, 2011; Bott et al., 2009; Bradley & Moran, 2011; IPGCF, 2009
1. 3. 1. Context of Physiotherapy in the Overall Management of Adults with Cystic
Fibrosis
In CF physiotherapy is one of a range of essential daily treatments for this complex,
multi-system, life limiting disease. Due to the time consuming nature of the overall
daily treatment regimens adherence is problematical. Pharmacological treatment
primarily focuses on the respiratory and GI systems while physiotherapy treatment is
focuses on the respiratory, musculo-skeletal and urinary tract systems. In this study
physiotherapy treatment was confined to the respiratory system and the musculoskeletal system where exercise enhances airway clearance and acts a means of
keeping fit and healthy. As the major cause of death is pulmonary in origin
physiotherapy treatment for airway clearance plays a key role in the treatment and
management of CF.
Daily chest physiotherapy aims to keep the airways clear of secretions or check that
they are already clear thereby minimising lung damage and preserving lung
function(ACPCF/CF Trust 2011; Bott et al., 2009; IPGCF, 2009). Regular exercise
also promotes a healthy lifestyle and can facilitating airway clearance (Bradley &
Moran, 2011). Together the result should be better health outcomes and potentially a
reduction in healthcare utilisation and heath care costs with a subsequent
improvement in Qo,L although to date no studies have been undertaken to establish
the nature of the relationship between these factors.
Physiotherapy treatment is primarily preventative and aims to:
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Reduce

The decline in respiratory function by reducing the incidence and impact of


chest infections
The impact of CF bone disease (osteoporosis)
The impact of musculo-skeletal problems (joint pains and poor posture)
Optimise health outcomes by

Using airway clearance techniques (ACTs) and adjuncts to facilitate the
removal of secretions from the respiratory tract and/or keep the chest clear of



secretions
Optimising ventilation
Encouraging exercise/activity to keep fit and healthy and to reduce the impact
of osteoporosis and the occurrence of musculoskeletal pain.
Promoting good posture in order to minimise the development of adverse
respiratory mechanics in the chest wall (kypho-scoliosis) and musculoskeletal
joint pain
Educate by

Improving knowledge and skills, enabling people with CF to optimise their
healthcare outcomes by encouraging them to take responsibility/ ownership
for their health care
Reduce Health care costs by

Reducing hospital utilisation


Reducing the demand on CF healthcare staff by encouraging self-management
Reducing pharmacological costs by reducing the frequency and impact of
repeated chest infections and reducing musculoskeletal pain through posture
correction exercises and good physiotherapy management of joint pain
With increasing emphasis placed on evidence-based practice, physiotherapists have
been required to scrutinise their practice carefully (Dodd & Prasad, 2005). High
quality, scientifically proven justification of chest physiotherapy is needed in order to
persuade people with CF and their carers of the value of a respiratory routine which
may not offer immediate or obvious benefit. Proven justification would reassure
physiotherapists of the efficacy of their practice.
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1. 3. 2. Physiotherapy Treatment Regimens
Physiotherapy for CF encompasses a range of treatment approaches and techniques
which are outlined below:
(a) Respiratory System
Described below are a range of ACTs and adjuncts to facilitate chest clearance that
are advised by the Association of Chartered Physiotherapists in Cystic Fibrosis
(ACPCF) in the ACPCF/CF Trust (2011) Standards of Care and Good Clinical
Practice for the Management of CF, the Association of Chartered Physiotherapists in
Respiratory Care (ACPRC)/British Thoracic Society (BTS) Guidelines for the
Physiotherapy Management of the Adult, Medical, Spontaneously Breathing Patient.
(Bott et al., 2009) and the IPGCF (2009) Clinical Guidelines for Physiotherapy
Management of CF and Physiotherapy for People with C F.
Airway Clearance Techniques

Active Cycle of Breathing Technique (ACBT)
The ACBT comprises a cycle of breathing exercises involving breathing control
(gentle relaxed breathing at tidal volume), thoracic expansion exercises (three/four
deep breaths with emphasis on inspiration) and one or two forced expiration
techniques (with an open glottis from mid to low lung volumes) to mobilise peripheral
secretions. Once the secretions have been mobilised they can be cleared from the
airways by coughing. The ACBT can be adapted to individual needs but with each
component of the cycle clearly defined (Button & Holland, 2008). As it is not
dependent on a device, it is an ACT that every patient should be taught. ACBT has
been shown to be effective and efficient in the mobilisation and clearance of
secretions and improvement in lung function (ACPCF/CF Trust, 2011). It does not
increase hypoxaemia or airflow obstruction.
 Autogenic Drainage
Autogenic drainage (AD) is a three-phased breathing regime using high expiratory
flow rates at varying lung volumes to facilitate mucus clearance (McIlwaine,
Davidson, Wong, & Pirie, 1991; Miller, Hall, Clayton, & Nelson, 1995). The
technique aims to maximise expiratory flow velocity to produce shearing forces and
mobilise secretions. While expiratory flow should be high, it should not be forced and
airway closure avoided. AD can be performed in any position.
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
Positive Expiratory Pressure (PEP)
Applying a resistance during expiration provides a PEP which can be utilised to
enhance the mobilisation of bronchopulmonary secretions. Periods of PEP breathing
are combined with the forced expiration technique (FET) to facilitate airway
clearance. PEP breathing induces a temporary increase in functional residual capacity
(FRC) and an increased inter-dependence between alveoli (Groth et al., 1985). It
facilitates collateral ventilatory flow and opens up closed airways. It is suggested that
the PEP induces increases in gas volume and pressure behind airway secretions
making expiratory manoeuvres more effective (Anderson, Qvist, & Kann, 1979). PEP
may be applied via a mouthpiece or mask. Treatment is usually undertaken in the
sitting position but may also be performed in other positions such as supine or side
lying to increase ventilation in a particular area. Breathing through the device should
be at tidal volume with only slightly active expiration (not prolonged or forced)
interspersed with breathing control. In order to select the appropriate level of
expiratory resistance a manometer should be inserted between the expiratory valve
and the resistor to measure mid-expiratory pressure. The appropriate resistance is one
which achieves a stable mid-expiratory pressure of 10-20cm H2O (ACPCF/CF Trust
2011).

Oscillatory Devices in cystic fibrosis
Oscillatory devices are designed to alter the expiratory airflow by using a device in
either an intra or extra thoracic manner. Oscillations or interruptions during expiratory
airflow have been postulated to mechanically reduce the visco-elasticity of sputum
and enhance muco-ciliary clearance (Button & Holland, 2008; Pryor, Webber, &
Hodson, 1990). Intra-thoracic oscillations are generated orally and created using
variable resistances within the airways generating controlled oscillating positive
pressure. When the oscillation frequency approximates the resonance frequency of the
pulmonary system, endo-bronchial pressure oscillations are amplified and result in
vibrations of the airways (ACPCF/CF Trust, 2011). The intermittent increases in
endo-bronchial pressure reduce the collapsibility of the airways during exhalation and
thereby facilitate the likelihood of mucus being cleared from the tracheo-bronchial
tract. The airflow accelerations increase the velocity of the air being exhaled,
facilitating the movement of mucus up the airways (ACPCF/CF Trust, 2011, 2002).
Exhalation through these devices generates both oscillations of positive pressure in
the airways and repeated accelerations of expiratory airflow that have been shown to
result in improved sputum clearance. Extra-thoracic oscillatory devices, such as an
inflatable vest attached to a machine, vibrate at variable frequencies and intensities as
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set by the operator to ensure the individual's comfort and associated adherence. The
devices frequently employed for this purpose are:
a. Flutter®
A small plastic device containing a large ball bearing which repeatedly interrupts the
outward flow of air (Pryor, 1999; Konstan, Stern, & Doershuk, 1994).
b. Acapella
A flow-operated oscillatory PEP device, which uses a counterweighted plug and
magnet to generate the oscillatory resistance (Volsko, DiFiore, & Chatburn, 2003).
c. Cornet
A horn-shaped tube which houses a rubber inner tube. The degree of rotation of this
inner tube reflects the resistance generated. As the individual exhales through the horn
the inner tube unfurls generating a rhythmic bending and unbending of the inner tube
within the horn throughout the expiration phase (Pryor, 1999).
d. Extra-thoracic Oscillations
Extra-thoracic oscillations are generated by forces external to the respiratory system,
for example high frequency chest wall oscillation (HFCWO) (Warwick & Hansen,
1991) such as an inflatable vest (ACPCF/CF Trust, 2011).
 Intrapulmonary Percussive Ventilation (IPV)
Intrapulmonary percussive ventilation uses a mechanical device that combines
internal thoracic percussion and inspiratory pressure through rapid mini bursts of air
superimposed on a spontaneous breathing pattern (ACPCF/CF Trust, 2011).
Expiration against the percussive element of the device leads to the maintenance of
positive pressure within the airways (Newhouse, White, Marks, & Homnick, 1998).
The proposed methods of action include; the maintenance of small airway patency
and prevention of airway closure and atelectasis, enhanced movement of secretions
and an improved distribution of nebulised medications in some instances (ACPCF/CF
Trust, 2011).
 Intermittent Positive Pressure Breathing (IPPB)
Intermittent positive pressure breathing provides intermittent positive pressure
ventilation (on inspiration only) that augments tidal volume, and indirectly improves
ventilation (ACPCF/CF Trust, 2011). It is a useful adjunct where there is increased
work of breathing/fatigue due to impaired secretion clearance, or atelectasis due to
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mucus plugging. In addition, nebulisation is also possible using IPPB which offers
advantages in patients with suppurative lung disease. IPPB is administered via a
mouth pieces of a face mask.
 Inhalation Therapy
Inhalation therapy offers the delivery of a wide range of medications using a variety
of devices (Bott et al., 2009). Inhaled medication includes the use of bronchodilators
to open up the airways, inhaled antibiotics and mucolytics/osmotics including saline,
hypertonic saline and RhDNase, which facilitate the removal of secretions. Inhalation
therapy is a significant component of the management of the respiratory sequelae
associated with CF. ACTs may be enhanced with effective inhalation therapy and
inhalation therapy may be enhanced by effective ACTs (Button & Holland, 2008).
The main determinants of deposition pattern for nebulized medications are breathing
pattern during inhalation, droplet size and age/condition of the lung (Boe, et al.,
2001). Inhalation therapy techniques and equipment therefore have the potential to
alter the amount of drug which is delivered to its desired destination.
 Non-Invasive Ventilation
Non-invasive ventilation (NIV) is ventilatory support provided via a nose or face
mask. NIV reduces the work on the respiratory muscles by providing positive
pressure during inspiration and expiration which results in improved respiratory
muscle performance, increased alveolar ventilation and improved gas exchange
(Button & Holland, 2008), the effects of which are crucial to the clinical application
of NIV in CF. This cyclical mode of ventilation increases gas volume and pressure
behind airway secretions and facilitates expiratory airway clearance procedures. In
adults and children NIV has been reported as reducing the work of breathing by
between 20 – 60% (Serra, Polese, Braggion, & Rossi, 2002; Piper, Parker, Torzillo,
Sullivan, & Bye, 1992; Hodson, Madden, Steven, Tsang, & Yacoub, 1991). This
effect is associated with a 30% increase in minute ventilation and tidal volume and a
7% reduction in transcutaneous carbon dioxide (Piper et al., 1992). As in IPPB the
FRC is increased by creating inter-dependence between alveoli, improved co-lateral
ventilation and the recruitment of previously closed airways (Button & Holland,
2008). NIV is accepted as a management tool for hypercapnic respiratory failure,
nocturnal hypoventilation or as a bridge to lung transplantation. It may also be used as
an adjunct to airway clearance and to facilitate exercise (Button & Holland, 2008).
(b) Musculo-Skeletal System
 Exercise/Activity
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The ideal exercise prescription for people with CF has not been established. Both
aerobic training (endurance exercise) and anaerobic training (resistance training or
high-intensity, short duration training) are beneficial (Bradley & Moran, 2008).
Aerobic training results in improved maximum exercise capacity and muscle strength
(Button & Holland, 2008). Anaerobic training has positive effects on lactate levels,
peak power and fat-free mass. Both types of exercise may have positive effects on
respiratory function (Schneiderman-Walker et al., 2000). Exercise programs have
beneficial effects both during admission for acute exacerbations and in the stable outpatient (Bradley & Moran, 2008).
Exercise is a cornerstone of therapy for patients with CF. Aerobic fitness is an
independent predictor of survival and those with better physical fitness have a better
QoL (Nixon, Orenstein, Kelsey, & Doershuk, 1992). There is a growing body of
evidence showing that people with CF are not only affected by decreased cardiorespiratory fitness (i.e. aerobic) but also decreased muscle power, strength and
endurance (i.e. anaerobic) (ACPCF/CF Trust, 2011). Furthermore poor posture and
flexibility are common features. The aim of encouraging exercise/activity is to
increase minute ventilation leading to the mobilisation of pulmonary secretions and
enhanced airway clearance (Button & Holland, 2008; Lannefors & Wollmer, 1992).
Some people with mild lung disease and good lung function use exercise together
with forced expiration (huffing), coughing and expectoration as stand-alone airway
clearance therapy. Others with more extensive lung disease and larger volumes of
sputum use exercise as an adjunct to a formal airway clearance therapy regimen. A
transient increase in the lung function tests of the FEV1 (Forced Expiratory Volume in
one second) and the peak expiratory flow rate (PEFR) following exercise has been
demonstrated in CF (Bilton, Dodd, Abbot, & Webb, 1992), suggesting that exercise
may result in increased flow transients and bronchodilation. This may facilitate the
clearance of secretions and improve ventilation. Coughing induced by exercise also
contributes to its effectiveness as an ACT (Button & Holland, 2008). There is some
evidence that structured exercise programs for people with CF improve fitness and
slow the rate of pulmonary decline (Bradley & Moran, 2008). For this reason it is
recommended that all patients should be encouraged to exercise several times per
week.
Clinically, physical exercise is used as an adjunct to ACTs to achieve the following
(Button & Holland, 2008):


Mobilise mucus
Open up collapsed or plugged airways by increasing ventilation
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
Increase expiratory flow which loosens mucus from the airway wall via shearing



forces
Increase resting lung volumes
Increase regional ventilation via gravitational effects by exercising in different
positions such as upright, sitting, supine, side lying or prone lying
Patients with milder lung disease may prefer to carry out physical exercise before
airway clearance therapy as it mobilises secretions and makes airway clearance
therapy more effective, where as those with advanced bronchiectasis and large
volumes of daily sputum need to do airway clearance therapy before being able to
enjoy exercise. Suitable forms of exercise to promote mucociliary clearance include:
walking, running, and bicycling (Button & Holland, 2008). Team sports such as
hockey and football combine the physiological benefits of exercise while
incorporating group and social activity, which in turn promotes regular participation
in physical exercise. Forced expirations and expectoration should always be
interspersed with physical exercise in order to optimise airway clearance therapy
(button & Holland, 2008).
1. 3. 3. Definition of Physiotherapy Treatment for the Purpose of the Study
Physiotherapy treatment, for the purpose of this study, refers to chest physiotherapy in
the form of ACTs and exercise which are common treatment modalities for all adults
with CF. The study excludes physiotherapy treatment for urinary incontinence and
musculo-skeletal problems as they are not universal problems in the adult CF
population. The study does not seek to investigate the efficacy of physiotherapy
treatments. All recommended treatments for the study participants were based on
clinical judgement and the best evidence-based practice available at the time.
1. 4. Adherence
1. 4. 1. Adherence to Treatment in Cystic Fibrosis
Poor adherence to treatment in CF is prevalent and attempting to improve it is
challenging. Poor adherence can potentially result in sub-optimal health outcomes,
increased healthcare costs and hospitalisation in addition to a reduced QoL, although
to-date there have been no studies undertaken that directly prove a between link these
factors. Adherence is a complex area of study, from which there is as yet no
consistent single reason or set of predictor variables to emerge, that explain why
14
people with CF engage in adherent, partially adherent or non-adherent behaviours.
Koocher, McGrath and Gudas (1990) described three types of non-adherence
behaviours from CF treatments: firstly those who have an inadequate knowledge or a
lack of understanding of the information available, secondly those who present with
psychosocial resistance and thirdly those who demonstrate educated non-adherence,
i.e. by making an informed choice not to carry out treatment. Lask (1994) however
proposed that adherence can be categorised as behavioural rather than cognitive. He
classified those who were non-adherent as ‘refusers’ who make no effort to conceal
their non-adherence; “procrastinators” who will admit to only occasional omissions
and ‘deniers’ who will not admit to non-adherence. However, White, Stiller and
Haensal (2007) in their study on adherence to physiotherapy in CF did not classify
their study population in terms of ‘adherence’ but as having an ‘acceptable frequency
of treatment’. There needs to be a definition of, and criteria for, adherence which
accurately reflects behaviour, in order to facilitate the development of evidence-based
practice for adherence to physiotherapy for adults with CF. Kettler et al. (2002)
proposed that in future the merger of medication and health monitoring technologies
could assist in behaviour change and give a more objective means of identifying and
measuring any changes.
Previously adherence to treatment was seen from a professional ‘expert’ perspective,
where recommendations were made and the patients were expected to carry them out.
Invariably this would present a dilemma, because if patients perceived that the
treatment was of no benefit to them, or was too complicated and time consuming,
their ability to adhere to it would be compromised (Daniels, 2010; Myers & Horn,
2006). The words ‘compliance’ and ‘adherence’ have been used interchangeably in
the medical literature with more recent studies favouring adherence. Meyers and
Midence (1998) in their study on adherence to physiotherapy in CF, quoted Leventhal
(1993) who proposed that the conceptual shift from compliance to adherence
represents an important first step in moving away from roles emphasising obedience
to instructions towards models emphasising independence and self-regulatory activity,
i.e. a person with CF may make an ‘educated’ decision not to continue with treatment
(Abbott & Gee, 1998; Lask, 1994). The expectation of total adherence is unrealistic,
yet to date, an acceptable level of non-adherence for each treatment regimen has not
been established.
Previously, adherence studies had focused on children and their family/carers but due
to increasing longevity, studies into the problems which adults experience are
emerging. Bucks et al. (2009) in their report quoted a number of studies highlighting
possible factors that influence adherence to treatment in CF, including lack of
15
knowledge about the disease (Ievers et al., 1999), locus of control and health beliefs
(Carr, Pryor, Smith & Partridge, 1996; Myers & Myers, 1999), self-efficacy
(Czajkowski & Koocher, 1987), perceived disease severity (Abbot, Dodd, & Webb,
1995; Gudas, Koocher, & Wypij, 1991), degree of optimism (Gudas et al., 1991),
coping style (Abbott, Dodd, Gee, & Webb, 2001), support (Abbott, Dodd, Bilton, &
Webb, 1994), the burden of carrying out time consuming treatment that impacts on a
persons QoL (Abbott et al., 1994; Conway et al., 1996; White et al., 2007) and the
perceived effectiveness or otherwise of physiotherapy treatment (Myers & Horn,
2006). The impact of these factors on the ability of adults to adhere to treatment have
yet to be fully investigated.
1. 4. 2. Adherence to Physiotherapy Treatment in Cystic Fibrosis
Non-adherence to physiotherapy treatment can reduce the benefits of good medical
care (Dodd & Prasad, 2005) and potentially lead to more a rapid deterioration in
clinical status, more frequent hospitalisation, increased healthcare costs and reduced
QoL. Although physiotherapists recommend best practice it cannot be taken for
granted that the patient will adhere to a recommended treatment if they perceive no
clinical benefit from it. If adults with CF are not adhering to treatment they need to be
identified so that scarce physiotherapy resources are efficiently and effectively
utilised, and appropriate educational strategies put in place to potentially optimise
adherence and thereby potentially bring about improved health outcomes and reduced
health care utilisation. However, to date there is no conclusive evidence of a
relationship between adherence to chest physiotherapy and long-term outcomes (van
der Schans et al., 2009).
Adherence behaviours are not clearly understood. The factors influencing adherence
to physiotherapy treatment in CF are multi-factorial and are outlined below:


No Cure – There is currently no cure for CF, therefore physiotherapy
treatment is palliative with the aim of delaying for as long as possible the
onset of debilitating chest infections and encouraging the promotion of health
and well being through exercise. The consequences of there being no cure for
CF can have a significant impact on peoples’ health beliefs as ultimately the
disease will lead, in the majority of cases, to an early death.
Health Outcomes – Research has shown that adherence to treatment in CF is
associated with improved pulmonary status and increased longevity (Abbott,
Havermas, & Hart, 2009; Bucks et al., 2009), therefore promoting adherence
16
through the development of evidence-based patient education strategies is an





essential part of the treatment of CF.
Health Beliefs – Adults with CF who have positive health beliefs and an
external locus of control are more likely to adhere to treatment (Bucks et al.,
2009; Carr, Pryor, Smith, & Partridge, 1996), as they would think that what
they do has a positive impact on the course of their disease. If they have
negative health beliefs, with an internal locus of control, they are more likely
to think that whatever they did will make no difference as there is no cure for
CF. This approach would compromise their ability to adhere to physiotherapy
treatment.
CF – Although a life limiting disease, people with CF may not feel ill and this
can impact on their ability to adhere to physiotherapy treatment from which
they may feel no discernable clinical benefit nor an apparent need when they
are feeling well (Huyard, 2008).
Quality of Life (QoL) – Adults with CF are living longer but only as a result
of complex and time consuming treatment programmes which can impact on
their QoL. Adults make decisions about which treatments they are going to
undertake in order to lead as normal a life as possible (Abbott et al., 1994;
Daniels, 2010).
Perceptions of Physiotherapy Treatment – Physiotherapy treatment has been
perceived by some non-adherent adults with CF as being ineffective (Abbott et
al., 2009; Daniels, 2010), and if people do not understand the benefits of
treatment they are unlikely to do it. By their very nature ACTs are repetitive
and have been perceived as “boring” (Carr et al., 1996; Myers & Horn, 2006).
However recent guidelines (ACPCF/CF Trust, 2011; Bott et al., 2009; Flume
et al., 2009) support the use of ACTs to improve sputum clearance, and the
need for them to be carried out on a daily basis.
Lack of knowledge – if people with CF do not have sufficient knowledge or
understanding of their condition and the benefits that treatments can bring
their adherence can be compromised.
These factors mentioned above, combined with the time consuming nature of
treatments for CF, can compromise adherence.
1. 5. Classification of Adherence for the Purpose of the Study
17
There is no universally accepted definition of the term ‘adherence’ and how it can be
measured in relation to physiotherapy treatment for CF, therefore for the purposes of
this study ‘adherence’ has been classified by the researcher/practitioner as:



Adherent - that which has been agreed between the researcher/ physiotherapist
and the participant and the participant reports that they are implementing it.
Partial Adherent - that which has been agreed between the participant and the
physiotherapist but the participant reports that they are only partially
implementing it.
Non-Adherent - that which has been agreed between the physiotherapist and the
participant but the participant reports that they are not implementing it, and
participants who report that they do not do any physiotherapy.
This classification of adherence is subjective. The recording of adherence is
dependent upon the physiotherapist’s judgement, the patient’s honesty, memory and
how accurately they carried out the treatment. Treatment can be carried out but not
competently, or the patient may believe they are doing it competently but the therapist
would consider it of a poor standard.
As discussed, people with CF may not adhere to physiotherapy treatment for a variety
of reasons (Christian, 2007) such as no obvious clinical benefit, they do not see the
need to do physiotherapy, it is too time consuming to fit it into their life styles, it is
repetitive and boring. These reasons do not form sub-divisions of the classification of
non-adherence for the purposes of this study. The issues surrounding the problems of
adhering to physiotherapy are explored as part of the study and therefore do not form
part of the categorisation.
1. 6. Self-Management Programmes in Chronic Disease
In recent decades awareness of the need to address chronic illnesses through selfmanagement and other approaches in order to minimise the distress and other costs
they impose, has risen up the healthcare agendas of all ‘rich world’ nations (The
Kings Fund, 2010). The focus on disease self-management is an important conceptual
advance in the understanding of chronic illness and improving health outcomes
(Holman & Lorig, 2004; Warsi, Wang, La Valley, Avorn, & Solomon, 2004). The
characteristics of chronic disease are:

No cure
18

Managed over a period of time





Undulating course
Obscure prognosis
Need for continual patient engagement in their health care
Patient and the professional working in partnership
Patients educated about their disease can apply their knowledge to guiding their
own disease management, with the healthcare professional acting as a teacher to
facilitate learning (Holman & Lorig, 2004).
These concepts have been advocated in government initiatives such as the “Expert
Patient” (DoH, 2007) where patients with a long term condition are given the
necessary knowledge and skills to be empowered to become active co-partners with
the professional in order to take increasing responsibility for their healthcare, so that
adherence is optimised and health care outcomes improved.
Self-management has been defined as collaboratively helping patients and their
families to acquire the knowledge, confidence and skills to manage their condition
and is increasingly important given the rising burden of chronic illness and the
resulting impact on heath services (Harris, Williams, Dennis, Zwar, & Powell- Davis,
2008).
The aim of self-management in chronic disease is to:









Increase adherence to treatment
Change behaviour
Improve knowledge and skills
Empower to manage their condition
Reduce unnecessary visits and admissions to hospital
Improve healthcare delivery
Optimise health care resources
Optimise health outcomes
Improve QoL
Disease-specific models of self-management have been delivered by health care
providers for asthma, diabetes, arthritis, chronic lung and cardiac disease (Kralik,
Koch, Price, & Howard, 2004; The Kings Fund, 2010; Warsi et al., 2004). They have
proved to be well used and effective in improving disease-specific intermediate health
outcome measures such as glucose control in diabetes and blood pressure in
hypertension. In a study by Lorig, Sobel, Ritter, Laurent, & Hobbs (2001) the
19
effectiveness of a self-management programme for people with chronic disease was
compared to those who did not have the ability to self-manage their condition. The
study demonstrated that the group that did not have the ability to self-manage
themselves showed limitations in exercise tolerance, cognitive symptom management,
communication with physicians, self-reported general health, health distress, fatigue,
disability, social/role activities and QoL. Those who self-managed their condition had
reduced medication costs, reduced hospitalisation and an improved QoL, the results of
which persisted for as long as three years (Lorig et al., 2001). During the 1990s Sobel,
Lorig, & Hobbs (2002) developed a Chronic Disease Self-Management Program
(CDSMP) to provide generic self-management courses. The development of the new
programme involved participants of varied ages and with a range of primary and comorbid conditions. The CDSMP was based on three underlying assumptions



patients with different chronic diseases have similar self-management
problems and disease-related tasks
patients can learn to take responsibility for the day-today management of their
disease(s)
confident, knowledgeable patients practising self-management will use fewer
healthcare resources.
The strongest evidence for the impact of self-management education on hospital
admissions and the use of the emergency departments comes from studies in the
United States of America (USA) which have relatively less developed primary care
gate keeping and therefore greater scope for self-management to affect hospital
admission rates (The Kings Fund, 2010). In the UK the DoH has encouraged selfmanagement through its Expert Patient Programme (2001b) and in its report ‘Self
Care – A Real Choice’ (DoH, 2005) which argued that there is growing evidence that
supporting self-care can help to improve health and QoL leading to an increase in
patient satisfaction and a reduction in the use of services and health care costs. With
the right support people can be empowered and learn to be active participants in
improving existing symptoms, avoiding flare-ups, slowing deterioration, preventing
the development of complications and helping them achieve a better QoL, whilst
living with and taking care of their conditions (DoH, 2005).
In respiratory conditions the benefits of self-management for asthma is a well
developed and recognised treatment modality. Gibson et al. (2002a; 2002b), in their
work on two Cochrane Reviews ‘Self-management education and regular practitioner
review for adults with asthma’ and ‘Limited information only patient education
programmes for adults with asthma’, reported that training in asthma self20
management, which involves self-monitoring coupled with regular medical reviews
and a written action plan, appeared to improve health outcomes and QoL more
than having a limited information only education programmes.
Although self-management being taught in groups for conditions such as asthma,
diabetes, chronic respiratory disease and heart disease has proved to be very
effective, this management approach would contravene the CF Trust Guidelines on
Cross Infection (2004a;2004b). People with CF are advised not to mix with each
other due to the risk of cross infection with Pseudomonas Auringeosa and Cepacia
(CF Trust, 2004a; 2004b). Self-management on an individual basis supported by
literature, the internet and tele-healthcare for monitoring purposes would be the most
effective means of delivering self-management programmes for people with CF.
Self-management programmes need to be personalised to meet the patient’s needs, to
be achievable and to have key indicators of what to do when unwell (Holman &
Lorig, 2004). For these outcomes to be realised the patient needs to be educated so
that they have sufficient knowledge and skills to carry out their healthcare
programmes.
1. 6. 1. Self-Management Programmes in Cystic Fibrosis
Self-management programmes have been developed for children with CF and their
families but they are not applicable to adults who are independent in their own care.
However self-management programmes for adults with CF are gaining prominence as
an effective way of giving people the necessary knowledge and skills to empower
them to be more responsible for their health care in order to improve their adherence
to treatment. These self-management programmes were aimed at people whose
disease had been diagnosed later in life and for whom non-adherence would have
swiftly produced unpleasant signs and symptoms (The Kings Fund, 2010; Holman &
Lorig, 2004; Warsi et al., 2004). This would not be the case with the current CF adult
population because when they were diagnosed with CF it was considered to be a
disease of childhood due to early mortality. Apart from a few who were diagnosed in
late childhood or early adulthood, adults with CF would have grown up with a life
limiting disease yet they may not have felt unwell. If people with CF do not carry out
their physiotherapy treatment they may not feel any immediate detrimental effects and
if they do their physiotherapy treatment they may not feel clinically better, which can
make adherence to treatment more difficult if there is no detectable change in clinical
status.
21
CF poses a challenge for self-management in view of the high level of daily treatment
activity for adults regardless of age or disease severity. Sawicki, Sellings and
Robinson (2009) identified in their Project on Adult Care in CF (PAC-CF), that the
time spent on airway clearance rather than gender, age or pulmonary function, was
associated with a higher perceived treatment burden which could compromise the
efficacy of a self-management programme. Although a patient may have a good
knowledge of CF and of the need to do physiotherapy it cannot be assumed that they
will carry out their treatment (Abbott & Gee, 1998). Connversely, some patients may
have a poor level of knowledge yet adhere conscientiously to treatment (Abbott &
Gee, 1998) while Sawicki et al. (2009) noted that the adults were making decisions as
to which treatment to do each day and there were acceptable reasons why they did so.
One of the key aspects of a successful self-management programme is to educate the
patient to ensue that they have the necessary knowledge and skills to fully understand
what is involved, why they are doing it and to make changes to their treatment within
agreed limits. Sawicki et al. (2009) identified in their study on self-management in
CF, that there was a lack of awareness of what self-management involved and that
people with CF need to be empowered to be more involved in planning their own
healthcare.
1. 6. 2. Patient Education in Self-Management Programmes
In a traditional model of patient education the professional was seen as the expert with
the patient taking a more passive and compliant role. In recent years, particularly with
the development of self-management programmes, the humanistic concepts of
education, where the teacher acts as a facilitator by working in partnership with the
learner, have been given increasing prominence (DoH, 2007; Knowles, 1989). The
benefits of a humanistic approach are its motivational characteristics, the promotion
of patient-centred learning, and the facilitation of the therapist and the patient working
together to define problems, the development of solutions and implementation of
jointly agreed goals (Dreeben, 2010). The humanistic theory of learning is dependent
upon the patient being engaged and empowered to work in partnership with the
professional so that they have greater ‘ownership’ of their health care, and will
potentially be more adherent to treatment (DoH, 2007).
1. 6. 3. Empowerment in Self-Management Programmes
Empowerment reflects a shift of emphasis in the delivery of health care from patients
being recipients of care to becoming empowered and liberated to play a central role in
22
decisions about their illness (Bradshaw & Bradshaw, 2004; DoH, 2010; Wensing,
2000). Empowerment has been defined by Rodwell (1996, p. 300) as
The process of enabling or imparting power transfer from one
individual or group to another. It includes the elements of power,
authority, choice and permission.
Empowerment is seen as a process of transferring power and includes the
development of a positive self-esteem and the recognition of the worth of self and
others (Mason, Backer, & Georges, 1991). Although the concept of the relationship
between the professional and the patient is based on equality, in practice this cannot
be the case in a health care setting (Hudson, 1999; Hugman, 1991; Webb & Tosell,
1991). The professional has skills, knowledge and access to facilities and equipment
which the patient will need to avail themselves of, thus creating an unequal balance of
‘power’ with the patient in the dependent position. The concept of ‘user
empowerment’ (Hudson, 1999) is at the heart of addressing the unequal power
relations in the traditional medical model of care by attempting to redress this
imbalance and putting the wishes of the user at the heart of the service. There is an
implicit assumption that some choices are better than others and that healthy choices
are rational choices but that may not be the case (Rogers, 2005). Patient choice is
influenced by their health beliefs, i.e. how effective they perceive their treatment to be
and the impact it has on their lives.
1. 6. 4. Health Belief Model in Self-Management Programmes
The Health Belief Model (HBM) has been a useful and enduring theoretical model
associated with preventative health behaviours and has been used as a tool to predict
adherence. Willis and Campbell (1992, p. 82) define the HBM as:
Behaviour is predicted based on the value one places on an outcome
and on one’s expectation that a given behaviour will lead to that
outcome.
The HBM has limitations as it does not account for diversity of motives and it lacks
standardised measurement tools. Some studies have placed considerable emphasis on
the HBM (Carr et al., 1996) while others (Abbott, et al., 1996; Myers & Myers, 1999)
have focused on attempting to predict behaviour. By being aware of the patient’s
health beliefs the health professional would be able to determine how a patient makes
health care decisions and potentially be able to predict levels of adherence to
treatment. Health professionals could also help to address negative health beliefs in
order to promote better adherence to treatment.
23
One of the most salient features of the patient’s health beliefs is their ‘locus of
control’. Moreau (2002, p. 13) defined locus of control as ‘a patient’s perception of
his ability to bring about change’. A patient with a strong locus of control who feels
they are able to influence events around them is considered to have an internal locus
of control, while a patient who has a passive acceptance of a situation and believes
that their circumstances are being controlled by other factors has an external locus of
control. Studies into adherence to physiotherapy in CF found that health beliefs
influenced the ability to adhere to treatment (Carr et al., 1996; Myers & Horn, 2006).
These two different sets of loci of control and health beliefs require different
educational approaches to facilitate learning in order to optimise the ability to adhere
to treatment.
1. 6. 5. Self-Management Physiotherapy Programmes for Adults with Cystic Fibrosis
To date no defined self-management physiotherapy programmes (SMPP) have been
developed for adults with CF. The purpose of this study was to develop a SMPP and
to evaluate its effectiveness in optimising the ability to adhere to treatment.
1. 7. Practitioner-Based Research
Patient education is an essential component of a successful self-management
programme. This unique exploratory study questioned the role of the physiotherapist
in patient education in CF. It was by critically enquiring into the role of the
physiotherapist in patient education that an opportunity for reflective practice arose.
Reflective practice was first conceptualised by Schon (1987) in an educational
context. He advocated that it was a retrospective process concerned with thinking
about action. By conducting research into a situational work based problem the
physiotherapist is developing a practitioner-based research approach to the
professional role of the physiotherapist. This practitioner-based research model is
seen (Holloway & Race, 1993) as a means of contributing to the theoretical basis of
practice. By conducting an exploratory research study, theory can subsequently
inform clinical practice. Holloway (1994) argues that the practitioner-based model
avoids the separation of theory and practice and contributes to the development of the
professional role. The CSP (2007) and the Health Professions Council’s Standards of
Proficiency for Physiotherapists (2007) encourage EBP as it closes the gap between
theory and practice and thereby achieves the government healthcare objectives (DoH,
2010) of improving quality of care.
24
In this study the role of the physiotherapist in CF patient education will be challenged
by moving from the traditional medical model, where the professional is the expert
and the patient takes a passive role, to a humanistic psycho-social model where the
physiotherapist acts as a facilitator, empowering the patient to work in partnership
with the professional in order to optimise the ability to adhere to physiotherapy
treatment see Fig. 1.1. below.
Traditional Medical Model

Role of the Physiotherapist(expert)

Educational Role (passive)

Model of the Learner (behavioural)
Psycho-Social Model

Role of the Physiotherapist (facilitator)

Educational Role (empowerment)

Model of the Learner (behavioural)
Fig. 1. 1. The role of the physiotherapist in cystic fibrosis
1. 8. Rationale for the Study
CF is a complex life threatening disease requiring daily burdensome time-consuming
treatment of which physiotherapy is the least liked component (Abbott, Havermas &
Hart, 2009; Daniels, 2010). Physiotherapy, which is an essential part of a CF
treatment programme, aims to keep the chest clear of secretions, promote fitness and
well being and thereby improve health outcomes and QoL in addition to potentially
reducing healthcare costs. Poor adherence to physiotherapy in CF is a well recognised
problem (Daniels, 2010; Ireland, 2003; White, Stiller & Haensal, 2007) the
consequences of which can result in a faster rate of decline necessitating increased
hospitalisation and health care costs and a reduced QoL and life expectancy.
The rationale for this study is to test a model for improving treatment adherence
through the development and evaluation of a SMPP for adults with CF, which in
concequence would potentially bring about improved health ooutcomes, reduced
health care costs, a better QoL and additional life expectancy. No such research has
been undertaken to date, so this study will contribute original knowledge to the
evidence base for physiotherapy clinical practice.
25
1. 9. Professional Doctorate
This study has been undertaken as a part of the researcher’s Continuing Professional
Development (CPD) programme. The CSP actively encourages research as part of
developing professionalisation (CSP, 2010) which is the process whereby any new
occupational group takes on the characteristics of a profession (Bithell, 1999). The
emphasis of a professional doctorate (PD) is that learning is based on professional
practice and work-based experience, requiring and enabling students to draw on their
professional activity within their learning and to relate their learning back to their
practice (CSP, 2010). A PD (University of Portsmouth, 2011) advocates the need for
health care professionals to actively engage in the development of clinical practice
through evidence-based research, appraisal, evaluation, leadership in the professional
field, the development of expert practitioners, professional autonomy and reflective
practice. The study enabled the learning outcomes of the course to be effectively
utilised in the development of professional expertise and to have that expertise
recognised within an academic context.
The development and design of this unique clinical work-based study fulfils the
attributes of a PD by investigating a complex physiotherapy clinical problem that
requires critical thinking, reflective practice and autonomous judgement to develop a
new and improved model of clinical practice that contributes to improved health care
outcomes. The development of the study will provide an original contribution to
physiotherapy practice, the results of which will be disseminated to a variety of
audiences.
1. 10. Study Aims
The study aims to improve adherence to physiotherapy in order to improve health care
outcomes, reduce health care costs and ultimately improve QoL. This study sought to
investigate the complex problems that adults with CF have in adhering to
physiotherapy treatment by establishing, from their perspective, what these problems
are and to develop an educational strategy in the form of a SMPP to potentially
optimise their ability to adhere to physiotherapy treatment. The study was confined to
chest physiotherapy and exercise and did not attempt to investigate the efficacy of
current physiotherapy clinical practice. If the SMPP proves to be effective in
improving adherence to physiotherapy then a new model of physiotherapy clinical
practice can be postulated.
26

The Research Question
Will the newly developed SMPP optimise the ability of adults with CF to
adhere to physiotherapy treatment?

Aims
1.
To investigate the problems that people with CF have with adherence
to physiotherapy treatment prior to the study.
2.
To investigate the level of adherence to physiotherapy treatment prior
to the study.
3.
To develop and test the effectiveness a new SMPP.
4.
To evaluate the impact of the new SMPP on adherence to
physiotherapy treatment.
5.
To postulate a new model of clinical practice for the future
physiotherapy treatment and management for people with CF.
The purpose of this work based study was to contribute to improved health outcomes
for adults with CF through the conduct and application of relevant high quality
research. The intention was to improve the scope, relevance and quality of
physiotherapy practice, to inform policy and clinical practice in CF health care, to
contribute to the development of knowledge-based physiotherapy clinical practice and
to ensure that the benefits of the research study are systematically and effectively
translated into practice. These features fall within the scope of good professional
practice, which is part of the government’s drive to develop clinical governance
(DoH, 2010) and they contributed towards the requirement of a PD by enabling the
researcher to be recognised as an expert practitioner.
27
CHAPTER TWO – LITERATURE REVIEW
2. 0. Introduction
The aim of this chapter is to review the literature on CF covering the following
topics:- the efficacy of chest physiotherapy, adherence to physiotherapy and
adherence to self-management programmes. This will be achieved by firstly
explaining the search strategy, identifying the key terms used in the search and the
inclusion and exclusion criteria, secondly discussing how the papers were appraised,
and thirdly reviewing the papers.
2. 1. Search Strategy
The search strategy used the following techniques:
Bibliographical Database Search
A systematic search was conducted in order to find relevant and specific literature for
the review. The databases and websites accessed in this search are listed in Fig. 2.1
and Fig. 2. 2 below.
DATABASES

AHMED

CINAHL

Cochrane Database of Systematic Reviews (CDSR)

DARE (Database of Abstracts of Reviews of Effectiveness) produced by
NHS Centre for Reviews and Dissemination (CRD)

DoH (Department of Health)

Embase

British Nursing Index (BNI)

Health STAR (Health Services, Technology, Administration and Research)

HMIC (Health Management Information Consortium)

Medline

NHS RD (Research & Development Programme)

NHS HTA (Health Technology Assessment) Programme

NIHR (National Institute for Health Research)

NICE (National Institute for Health & Clinical Excellence)

Physiotherapy Evidence Database (PEDro)

PsychINFO
Fig. 2. 1. Databases
28
WEBSITES

ACPCF (Association of Chartered Physiotherapist in Cystic Fibrosis)

ACPRC (Association of Chartered Physiotherapists in Respiratory Care)

CSP (Chartered Society of Physiotherapy)

CF Trust (Cystic Fibrosis Trust)

British Thoracic Society (BTS)

Public Health Resource Unit
Fig. 2. 2. Websites
Search Terms
Searches were performed using thesaurus terms and key words designed to find
articles investigating the issues surrounding adherence to physiotherapy in CF and
self-management programmes. Specific terms were used as outlined in Fig. 2. 3. The
thesaurus terms ensured case synonyms such as “physiotherapy” and “physical
therapy” were not inadvertently omitted.
Thesaurus Terms









Key Words





Cystic Fibrosis
Physiotherapy
Adherence
Patient Education
Self care
Health Beliefs
Patient Compliance
Physical Therapy
Attitude to Health
Health Beliefs
Self-Management
Empowerment
Compliance
Adherence/Adhere
Fig. 2. 3. Search Terms
Thesaurus terms and key words terms were combined with the Boolean operators
‘AND’, or ‘OR’ as outlined in Appendix A. Truncation was used on key words to
expand the sensitivity of the word stem. The process for retrieving the literature is
outlined in Appendix B. The search strategy (Appendix C) was re-run at six-monthly
intervals to update the literature search.
Inclusion and Exclusion Criteria
Articles were included if they met the following criteria:
29






Time frame of up to 30 years as treatment of CF has developed and life
expectancy increased. Earlier studies would not be relevant as there was only a
small adult population and studies into adherence behaviours had not been
undertaken
Only English language papers, as translation was not possible due limited
funding
Studies involving children and adolescents were included if they were relevant
Nursing and psychological literature databases were deliberately selected to
enable the study to have a comprehensive perspective by giving consideration
to the point of view of people who have CF
Qualitative and quantitative evidence was not limited to specific study designs
Hand Searching
In addition to the search of electronic databases, the University of Southampton
Health Services Library, the University of Portsmouth Library, the University of
Oxford Medical Library and St. Mary’s Hospital, Isle of Wight, Health Services
Library resources were searched for relevant books, pamphlets, journals and
periodicals and they provided full text copies of relevant papers.
2. 2. Methodology
2. 2. 1. Critical Appraisal Tools
In order to be objective in reviewing the retrieved literature several methodological
appraisal tools were considered, such as the Scottish Intercollegiate Guidelines
Network (SIGN), the Journal of the American Medical Association (JAMA) user
guides and the Sheffield Evidence for Effectiveness and Knowledge (SEEK), with
each having their own strengths and weakness. All of these methodological tools were
unsuitable as critical appraisal tools (CATs) for this thesis. SIGN was more
appropriate for the development of practice guidelines, while SEEK acts as a
electronic gateway for information on evidence-based resources but does not provide
a tool to evaluate effectiveness, and JAMA user guides were more appropriate for
medical models of treatment. In view of these limitations the Critical Appraisal Skills
Programme (CASP) (www.caspinternational.org/) was chosen as it provided a
common methodological approach to each of the research frameworks. It was more
suitable for a clinical decision making approach as it seeks to make sense of research
evidence in order to put knowledge into practice.
30
CASP is based on the guidelines produced by the Evidence Based Medicine approach
devised by clinicians at McMaster University and colleagues across North America.
The tools were adapted from the work carried out by Oxman, Cook and Guyatt (1994)
who developed a users guide to appraising medical literature. The aim of the CASP
approach is to systematically examine research evidence with a view to assessing its
validity, results and relevance before using it to inform a decision. Critical appraisal
(Hill & Spittlehouse, 2001) is an essential part of evidenced-based clinical practice as
it includes the process of systematically finding, appraising and acting on evidence of
effectiveness. Critical appraisal allows sense to be made of research evidence with the
aim of closing the gap between research and practice. It is the process of assessing
and interpreting evidence by systematically considering its validity, results and
relevance.
Although the CASP system is a strategic approach more limited than the protocols
used for groups such as the Cochrane Collaboration (www.thecochranelibrary.com), it
nevertheless fulfils the essential elements of a structured and systematic framework
for evaluating research studies. The literature is identified according to an explicit
search strategy, selected according to defined inclusion and exclusion criteria and is
evaluated against consistent methodological standards. The research studies were
divided into methodological groups so that the appropriate CASP appraisal tools
could be used:
Meta-analyses
●
Case control

Systematic reviews
●
Economic studies

Cohort studies
●
Qualitative studies
The appraisal of a paper resulted in a level of evidence being given. The
methodological assessment was based on a number of key questions that focused on
those aspects of the study design that research had shown to have had a significant
influence on the validity of the results reported and the conclusions drawn. These key
questions differ between study types and a range of check lists was used to bring a
degree of consistency to the assessment process.
An example of key preliminary questions for systematic reviews are outlined below:



Is the study valid?
What are the results?
Will the results help locally?
31
These key preliminary questions were then followed by more detailed questions
which acted as check lists (Appendix D). These CASP check lists were subjected to
evaluation and adaptation to meet the requirements for a balance between
methodological rigour and practicality of use. How the hierarchy of evidence was
graded is outlined below in Table 1.
2. 2. 2. Hierarchy of Evidence
The hierarchy of evidence used was based on the Scottish Intercollegiate Guidelines
Network (SIGN, 2008), with each study having a level of evidence accompanying it.
Table 2. 1. Levels of Evidence Based on SIGN (2008)
Level
I++
Type of Evidence
I+
High quality meta-analysis, systematic reviews of randomised
Controlled trails (RCTs) or RCTs with a very low risk of bias.
Well conducted meta-analysis, systematic reviews, or RCTs with a low risk of bias.
I-
Meta-analysis, systematic reviews, or RCTs with a high risk of bias
3
High quality systematic reviews of case-control or cohort studies. High quality
case-control or cohort studies with a very low risk of confounding or bias and a
high probability that the relationship is casual
Well-conducted case-control or cohort studies with a low risk of confounding or
bias and a moderate probability that the relationship is causal
Case control or cohort studies with a high risk of confounding or bias and a
significant risk that the relationship is not causal
Non-analytical studies (e.g. case reports, case series )
4
Expert opinion
2++
2+
2-
2. 3. Analysis of the Literature
The analysis of the literature was divided into 4 sections, each with an accompanying
table of evidence presenting key studies:



Physiotherapy Airway Clearance Techniques (ACTs) for adults with CF
Adherence to treatment for adults with CF
Exercise in the management of adults with CF
Self-management for adults with CF
2. 3. 1. Physiotherapy ACTs for Adults with cystic fibrosis
Table 2. 2. Reviewing the key evidence for ACT’s is presented on p. 34
32
Although it was not the remit of this study to investigate the efficacy of chest
physiotherapy using ACT, a review of the literature was undertaken in view of it
being perceived as ineffective or unnecessary by some adults with CF (Abbott, et al,
1994; Daniels, 2010; Llorente, et al., 2008). Questioning the effectiveness of ACTs in
CF can compromise the ability to adhere to physiotherapy. Of the six papers reviewed
five were Cochrane Reviews each of which commented on the poor quality of the
studies, the lack of universally agreed definitions and the variety of outcome
measures, making meta-analysis difficult to undertake. Each of the reviews were
rigorous and systematic in their approach to selecting studies which were valid and
reliable enough to influence physiotherapy clinical practice. Although it is well
recognised that the physiotherapy management of CF is burdensome, to date airway
clearance studies have shown little interest in patient reported outcomes, which needs
to be addressed if adherence to treatment is to be optimised (Daniels, 2010). The five
Cochrane Reviews are discussed below:
Firstly, Robinson, McKoy, Saldanha, and Odelola (2010) assessed the efficacy of the
active cycle of breathing technique (ACBT) compared to other ACTs. Of the initial 17
studies considered, only four, involving 98 participants met the inclusion criteria. The
review concluded that the ACBT was comparable to other ACTs in outcome measures
such as patient preference, lung function, sputum weight, oxygen saturation and the
number of pulmonary exacerbations. The review was hampered by the lack of long
term randomised controlled studies, insufficient data and the lack of consistency in
outcome measures which made comparisons difficult.
The second review (Morrison & Agnew, 2009) investigated oscillating devices and
reviewed 34 studies, involving 859 participants, which met the inclusion criteria.
Oscillating devices prevent premature closure of the bronchi by loosening secretions
in order to facilitate detaching mucus from the airway walls (IPG/CF, 2009). The
duration of these 19 studies lasted from one week to one year.
The data was insufficient to perform a meta-analysis. The lung function test of the
FEV1 was the most frequently used outcome measure. The review concluded that
there was no clear evidence that oscillating devices were more or less effective than
any other form of airway clearance. The measurement tools however may not have
been sensitive enough to detect changes that could have distinguished between
devices.
33
Table 2. 2. Physiotherapy airway clearance techniques
TITLE
Author
YEAR
TYPE OF
ARTICLE
Systematic
Review
SUMMARY OF THE EVIDENCE
Cochrane Review:
Conventional chest
physiotherapy compared to
other airway clearance
techniques for cystic fibrosis
Main, Prasad, &
van der Schans
2009
Cochrane Review: Positive
expiratory pressure
physiotherapy for airway
clearance in people with cystic
fibrosis
Elkins, Jones, &
van der Schans
2009
Systematic
Review
Cochrane Review: Chest
physiotherapy compared to no
chest physiotherapy for cystic
fibrosis
Van der Schans,
Prasad & Main
2009
Systematic
Review
126 trials identified; 6 met the inclusion criteria; 66 participants. Airway clearance
techniques have short-term effects in terms of increasing mucus transport. No evidence
was found on which to draw conclusions concerning the long term effects.
Cochrane Review: Oscillating
devices for airway clearance in
people with cystic fibrosis
Morrison &
Agnew
2009
Systematic
Review
78 references identified; 34 met the inclusion criteria; 859 participants. . Insufficient
data to perform a meta-analysis. Fev1 most frequently used outcome measure.
Conclusion – no clear evidence that oscillating devices wer any more effective than any
other airway clearance device.
Robinson, Mckoy
Saldanha, &
Odelola
2010
Systematic
Review
58 studies identified; 17 met the inclusion criteria; 364 participants. There is insufficient
evidence to support or reject the use of ACBT over any other airway clearance
technique. Longer term studies are needed to more adequately assess the effects of
ACBT on outcomes important for patients such as quality of life and patient preference.
Pryor,
Tannenbaum,
Scott, Burgess,
Cramer, Gyi &
Hodson
2010
Randomised
Controlled
Trial
Prospective RCT (n = 75). There was no statistical difference between 5 airway
clearance techniques. Patient preference was important
Cochrane Review: Active cycle
of breathing technique for
cystic fibrosis
Beyond postural drainage and
percussion: Airway clearance
in people with cystic fibrosis
LEVEL
83 publications identified;29 met the inclusion criteria (15 data sets); 475 participants .
Outcome measure – standard lung function tests. Insufficient evidence to confirm or
exclude any differences between CCPT and other airway dependant techniques in terms
of respiratory function but this may have been reflected insufficient evidence rather than
equivalence between methods.
1++
40 studies identified,;25 met the inclusion criteria; 507 participants. No clear evidence
that PEP was a more or less effective intervention than other forms of physiotherapy.
Limited evidence
1++
1++
1++
1++
1+
34
The third review (Main, Prasad, & van der Schans, 2009) compared conventional
chest physiotherapy (CCPT) to other ACTs and identified 83 studies of which 29,
involving 474 participants, were selected as they met the search criteria of being a
randomised or quasi-randomised trial or a cross-over design. Studies that were
undertaken during acute exacerbations demonstrated significant gains in respiratory
function, measured by standard lung function tests, irrespective of the ACT used. The
review was unable to determine any advantage of CCPT over any other ACT in terms
of respiratory function. The studies reported individual participant preferences for
technique, with self-administered techniques being the most preferred. The lack of
consistency in outcome measures precluded a meta-analysis being undertaken.
The fourth review (Elkins, Jones, & van der Schans, 2009) investigated the efficacy of
positive expiratory pressure (PEP). PEP is the use of positive pressure at the end of
expiration to keep the small airways open to facilitate sputum clearance. This review
identified 40 studies of which 25, involving 507 participants, met the inclusion
criteria. The quality of the studies was poor which limited the usefulness of the
conclusions and prevented a meta-analysis being undertaken. Only nine studies
recorded participant preference. The review concluded that there was limited evidence
that PEP was preferred by participants compared to other ACTs, but this finding was
from studies of low quality.
The fifth review (van der Schans, Prasad, & Main, 2009) investigated chest
physiotherapy compared to no chest physiotherapy. Of the 126 studies reviewed six
cross-over trials, with 66 participants, were eligible for inclusion. The studies were all
of short duration, being less than seven days. The review did not distinguish between
studies involving children and adults, thereby reducing its validity as the anatomy and
physiology of adults and children are dissimilar. Studies were difficult to compare due
to the variety of outcome measures including cough, sputum and radioactive tracer
clearance. The study was able to conclude that ACTs do have short term effects in
increasing mucus transport, which was assessed using objective measures, and
therefore supported current clinical practice.
The five reviews (Elkins et al., 2009; Main et al., 2009; Robinson et al., 2010;
Morrison & Agnew, 2009; van der Schans et al., 2009) concluded that ACTs had the
short term effect of increasing mucus transport and that there appeared to be no
advantage of either conventional chest physiotherapy (CCPT) or oscillating devices
over other any other ACT in the primary outcome measure of lung function. No
distinction was made in the conclusions indicating whether the studies involved
35
children, although this would have implications for validity when applied to adults as
children would have had physical assistance from their parents/carers with
shaking/vibrations to aid sputum clearance, and their anatomy and physiology is
different. The reviews concluded that there was little evidence to show the long term
effects in chest clearance, QoL, or survival but this may well reflect the paucity of
evidence available to date.
Pryor et al. (2010) investigated the efficacy between five different ACTs used by
adults with CF over a period of a year. The randomised controlled trial involved 63
participants. The primary outcome measure in their study was the lung function
measurement of the forced expiratory volume in one second (FEV1). Although the
study was careful in ensuring that the participant’s ACT was as accurate as possible,
studies in respiratory physiotherapy are reliant on the participants’ self-reporting and
therefore dependent on honesty, accuracy of technique and memory, which may be
unreliable over a long period of time. The efficacy of physiotherapy is difficult to
establish over a long period of time as treatment strategies for other aspects of CF
treatment would influence the course of the disease. Pryor et al. (2010) concluded that
there was no statistically significant difference in effectiveness between the five ACTs
investigated, which therefore supported current physiotherapy practice.
With the exception of the Pryor et al. (2010) study there is a paucity of rigorous trials
into the effectiveness of ACTs for adults with CF, with the few studies that have been
conducted being underpowered (Marks, 2007), lacking in clarity as to which outcome
measures are most useful for comparing various ACTs, and none longer than three
months duration. The presentation of pulmonary function tests provides a more
convincing efficacy (Yankaskas, Marshall, Sufian, Simon, & Rodman, 2004) and was
used in the Pryor et al. (2010) study as a primary outcome. To date, the five Cochrane
Reviews involving short term studies and one long term study of one year (Pryor et
al., 2010) concluded that for adults with CF, physiotherapy ACTs are effective in
facilitating chest clearance but with no one ACT being any more effective than any
other.
2. 3. 2. Adherence to Treatment for Adults with Cystic Fibrosis
Table 2.3. Reviewing the key evidence for adherence to CF treatment for adults with
CF is presented on p. 38.
Difficulties of assessing adherence
36
Studies relating to adherence to treatment in CF are difficult to compare due to the
different aspects of treatment involved (e.g. physiotherapy or medication), resulting in
increasing complexity and duration of daily treatment as the disease progresses.
Adherence rates for each treatment are influenced by the difficulty of administering it
and its perceived benefits. Studies into adherence are difficult to compare as there is a
variable interpretation of terms used and treatment for CF changes, consequently
cross-sectional studies into adherence cannot compare like with like. Studies into the
management of chronic diseases found that adherence can vary according to factors
other than disease severity (Myers & Horn, 2006; Myers & Midence, 1998) and that
treatment complexity, which is relatively common in chronic conditions, can
compromise adherence (Badlan, 2006; Bernard & Cohen, 2004).
In a review by Abbott et al. (2009) of thirteen papers on adherence to treatment in CF,
they noted that poor adherence was common and the principle cause of treatment
failure, resulting in faster disease progression, reduced survival and compromised
medication dosage in clinical trials. Non-adherence rates varied considerably with
higher adherence for pill taking but lower for more burdensome treatments such as
chest physiotherapy (DiMatteo, Giordani, Lepper, & Croghan, 2002; Quittner, Modi,
Lemanek, Ievers-Landis, & Rapoff, 2008). The wide variation in adherence rates are
probably exacerbated by inconsistent approaches, a lack of definition of adherence
and different methods of measurement used, thus making comparisons difficult. It is
difficult to assess the adequacy of samples used in studies, particularly when a
proportion of the sample has specific treatments. Many studies used convenience
samples from single centres with no sample size justified.
There are several factors that compromise a critical appraisal of the literature on
adherence to treatment in CF:Firstly, there is no consensus on the definition of adherence. Kettler et al. (2002), in
their review of the literature on adherence to treatment in CF, concluded that there
was no consensus of opinion on the definition of adherence in general, making studies
difficult to compare.
37
Table 2. 3. Adherence to treatment for adults with CF
SUMMARY OF THE EVIDENCE
AUTHOR
YEAR
TYPE OF
ARTICLE
Predicting medical compliance
among adolescents with cystic
fibrosis
Czajkowski &
Koocher
1986
Case control
The assessment technique used offers a new avenue of approach in the prediction of
non-compliance which in turn may enable the use of interventions to reduce patient’s
morbidity.
2++
Medical compliance and coping
with Cystic Fibrosis
Czajkowski &
Koocher
1987
Descriptive
There was an identifiable behaviour difference in coping skills between compliant and
non-compliant patients which may prove useful to clinicians treating children with
cystic fibrosis.
2++
Typologies on non-adherence
in cystic fibrosis developmental
and behavioural paediatrics
Koocher et al.
1990
Descriptive
The conceptual framework of inadequate knowledge, psychosocial resistance and
educated non-adherence could be put to clinical use in order to enhance diagnostic and
treatment efforts.
3
Treatment compliance in adults
with Cystic Fibrosis
Abbott et al.
1994
Descriptive
study
The reported degree of compliance and reasons for poor compliance were treatment
specific. Demographic and disease severity variables were not associated with
compliance. Those involved in the care of patients with cystic fibrosis were able to
predict compliance.
3
Non-adherence to treatment in
cystic fibrosis
Lask
1994
Descriptive
The recognition and management of non-adherence is complex and an important aspect
of cystic fibrosis care. Successful treatment is dependant upon a correct and complete
understanding of the underlying issues.
3
Difference perceptions of
disease severity and self care
between patients with cystic
fibrosis, their close companions
and physicians
Abbot et al.
1995
Descriptive
From the physician’s viewpoint, patients and close companions under estimate the
severity of cystic fibrosis and over estimate patient self care.
3
TITLE
38
LEVEL
Compliance with treatment in
adult patients with cystic
fibrosis
Conway et al.
1996
Survey
91 participants - self-completed questionnaire. Non-compliance is universal and
should be recognised as normal behaviour. There are no reliable criteria for predicting
any patients’ level of compliance. Treatment protocols should be planned around
individual patient’s requirements, modifying treatment ideals where necessary
according to the exigency and pattern of that patient’s lifestyle.
Adherence to medical
treatments in adolescents with
cystic fibrosis: the development
and evaluation of family-based
interventions
Quittner et al.
2000(b)
Descriptive
study
Behavioural scientists have made substantial progress in developing and evaluating
family-based interventions that hold promise for improving adherence behaviours and
family functions.
2
Adherence to physiotherapy
and quality of life for adults
and adolescents with cystic
fibrosis
Ireland
2003
Literature
review
Longitudinal studies on individually tailored evidence-based treatment, accommodating
patients’ health beliefs need to be undertaken in order to improve adherence to
physiotherapy treatment and potentially a patient’s quality of life.
3
Psychological interventions for
cystic fibrosis
Glasscoe &
Quittner
2008
Systematic
review
There is some evidence that behavioural interventions can improve emotional outcomes
in people with cystic fibrosis and their carers. Multi-centre approaches are required to
increase the sample size of studies in the psychological field and to enhance the power
and precision of the findings.
1++
Increasing adherence to cystic
fibrosis treatment: a systematic
review of behavioural
techniques
Bernard & Cohen
2004
Systematic
review of the
literature
Behavioural techniques provide a practical way to increase adherence to cystic fibrosis
treatment regimens. Gender related differences should be examined.
1+
Adherence to treatment in
children and adolescent patients
with cystic fibrosis
Zindani et al.
2006
Case control
Parental supervision and disease severity are likely to play a major role in adherence to
treatment. A partnership with parents and families about the treatment plan might be
important in improving adherence rate. Adherence to treatment is influenced by
treatment that patient view as beneficial and/or leads to a decrease of symptoms.
-2
39
3
Young people living with
cystic fibrosis: an insight into
their subjective experience
Badlan
Gender differences in treatment
adherence among youth with
cystic fibrosis; development of
a new questionnaire.
Patterson, Wall,
Berge & Milla
Adherence to treatment in
adolescents with cystic fibrosis.
The role of illness perceptions
and treatment beliefs
Adherence to the medical
regimen: clinical implication
sof new findings
2006
Nonexperimental
descriptive
study
Priorities in the life of the patient are likely to differ from those of healthcare
professionals consequently total adherence to medical care will be compromised.
Healthcare professionals need to understand that a degree of non-adherence is normal,
necessary and acceptable. Patients want to be in control of their lives and be ‘normal’
which will result in a ‘trade off’ between treatment and leading a normal life.
2008
Survey
Living with CF appears to have a greater emotional impact on girls compared to boys
which may account for poorer pulmonary function among girls with CF. Low response
rate of 58%
3
Bucks, Hawkins,
Skinner, Horn,
Seddon & Horne
2009
Survey
Support for self-regulatory model. Treatment beliefs and beliefs about the chronicity of
CF were significant predictors of adherence to physiotherapy. Small study population of
38 participants but considered by the authors that with a 73% response rate the results
were generaliseable. Partial adherence was not accounted for
3
Abbott, Havermas
& Hart
2009
Meta-Analysis
13 studies reviewed. High perceived treatment burden in CF. Tailored interventions
and good communication are essential factors in improving adherence. Future studies
need to be theoretical and longitudinal.
1-
40
3
The definitions that do exist demonstrate a lack of patient involvement in determining
their health care programmes as they assume a passive acceptance of a health care
recommendation by the patient e.g. “a person’s behaviour being consistent with health
care recommendations” (Abbot et al., 2009, p. 597). The apparent lack of recognition
of patient involvement by health professionals may in part account for low rates of
adherence for physiotherapy. The chronic and variable nature of CF and its
interdependent components of care, with lack of evidence for optimum levels of
adherence for maximum clinical benefit for most aspects of the CF treatment, makes
determination of a criteria for adherence an ongoing process of adjustment and
balance (Kettler et al., 2002).
Secondly, measuring adherence to treatment is complex and is determined by what the
professional recommended, what people do when they carry out a treatment, duration
and frequency of treatment and the honesty, re-call and accuracy when recording
treatment. To date measuring adherence has been dependent upon ad hoc
questionnaires (Abbott et al., 2009). In particular, there are two questionnaires
available that investigate adherence to treatment in CF, i.e. the Manchester Adult CF
Questionnaire (Abbott et al, 1994) and the CF–Treatment and Management
Questionnaire (CF-TMQ) (Cowland, Yorke, & Carr, 2009), which was developed
using the Medical Compliance Incomplete Stories Test (MCIT) Koocher, McGrath, &
Gudas (1990). Two measurement tools have been developed, the Disease
Management Interview - CF (Quittner, Espelage, Ievers-Landis & Drotar, 2000a) and
the Treatment Adherence Rating Scale (TARS) (Delambo, Ievers-Landis, Drotar, &
Quittner, 2004) both of which have shown some good psychometric properties, but as
they relate to children and their families they are not directly applicable to adults.
Adherence rates, which vary over a period of time, are usually counted as a
percentage and need to be treated with caution, as missing a treatment can produce
large percentage changes in studies with small populations. Studies on adherence
behaviour utilise self-report which is subject to bias, errors, or intentional
manipulation which is likely to over estimate the extent of adherence (Daniels, 2010).
Methods such as diary cards, with a duration of 24 hours to three months, and
electronic monitoring of nebulisers have been used. Each method has its relative
merits pertaining to reliability, validity, feasibility and cost with electronic monitoring
(which would not be possible to do for chest physiotherapy treatment) viewed as the
gold standard. Modi and Quittner (2006) concluded, in their multi-method assessment
of treatment adherence in CF, that adherence varied with both the treatment and
measurement method, with the self-reported questionnaire producing considerably
higher result values, which should therefore be treated with caution.
41
Thirdly, although there are various degrees and types of adherence, the literature
frequently reports (Kettler et al., 2002; Myers & Horn, 2006; White et al., 2007)
adherence as a dichotomous construct of being adherent or non-adherent with no
reference made to a degree of normal non-adherence nor to partial adherence.
Finally, studies into the influence of gender in adherence to treatment in CF are
beginning to emerge, with gender ratios and differences in adherence levels between
the sexes measured. Gender studies (Dodd & Webb, 2000; Patterson, Wall, Berge, &
Milla, 2008; Willis, Miller, & Wynn, 2001) have noted that males who have a longer
life expectancy (CF Trust, 2011a) were more adherent than females, while Patterson
et al. (2008) hypothesised that the stresses and strains related to adherence behaviour
may be sex-related, with women finding it more difficult to cope than men as well as
having a shorter life expectancy. However Sawicki et al, (2009) in their survey of 304
participants concluded that gender was not associated with a perceived higher
treatment burden.
Further examples of studies that investigate adherence behaviours in adults with CF
are outlined below:
Table 2. 4. Examples of studies that appear to influence adherence behaviour
Influencing Factors
Studies
Patient Education/Knowledge
Czajkowski & Koocher, 1987; Ievers et al., 1999;
Kettler et al., 2002
Health beliefs and locus of control Carr et al., 1996; Myers & Myers , 1999; Pryor et al.,
2010
Perceived disease severity
Abbott, Dodd, & Webb, 1995; Bucks et al., 2009;
Gudas, Koocher, & Wypij, 1991; Kettler et al., 2002
Efficacy of physiotherapy
Pryor et al., 2010; Abbott et al., 1994 Carr et al., 1996;
Daniels, 2010; Elkins et al., 2009; Main et al., 2009;
Robinson et al., 2001; van der Schans et al., 2009
Coping style
Abbott et al., 2001
Burden of treatment (boring, time Abbott et al., 2009; Carr et al., 1996; Christian, 2007;
consuming, embarrassing)
Daniels, 2010; Kettler et al., 2002; Myers & Horn, 2006;
White et al., 2007
These studies highlighted the multi-factorial influences on adherence behaviours in
CF, which will vary with disease progression, complexity of treatment, life style and
life events. For those with severe disease, adherence to treatment is particularly
difficult because of the lack of positive reinforcement from any obvious beneficial
effect (Kettler et al., 2002).
42
Predicting Adherence
Correlations have made between medical and paramedical staffs’ view of whether
patients were adhering to treatment and the patients own self-reported adherence
levels. Abbott et al. (1995) investigated whether it was possible to accurately predict
adherence to treatment for people with CF, and carried out a study where a close
carer/parent/friend was asked in-depth questions regarding the study participant’s
adherence to treatment. The handing in of prescriptions was considered to be an
objective and accurate outcome measure of the participant’s adherence to treatment
which was then correlated with the clinician’s own judgement of their level of
adherence and the carer/parent/friend’s opinion. The use of this method of
measurement raises ethical issues because the handing in of a prescription is not
indicative of the medication being used. Although a parallel may be sought, it is not
conclusive proof that failure to collect medication is an indication of general nonadherence, because those who do collect their prescriptions may not always take it
and adherence rates can vary between different treatments. This study concluded that
those involved in the care of patients with CF were able to predict patient compliance
(adherence). This finding was not supported by Conway et al. (1996) whose study,
which used a self-report questionnaire issued to 91 adults with CF, with a response
rate of 88%, concluded that clinicians were likely to overestimate adherence by up to
20%. This conclusion was support by Kettler et al. (2002) in their review of adherence
as they concluded that physicians are likely to overestimate the level of adherence
while Daniels et al. (2011) demonstrated that professional carers were poor judges of
adherence. The study by Daniels et al., (2011) involved 78 adults with CF who were
questioned about their adherence to prescribed nebulisers over the previous three
months. Self-report and clinician report was compared to stored adherence data
downloaded from the I-Neb nebulizer system. The study concluded firstly that self
and clinician reporting of adherence did not provide accurate measurement of
adherence when compared to electronic monitoring, and secondly that using
inaccurate measures had implications for treatment burden, clinician prescribing
practices and funding.
Health Beliefs and Perceptions of Having CF
A study by Abbott et al. (1996) (see Table 2. 3) attempted to ascertain whether health
perceptions influence adherence to treatment in CF. The study involved selecting 60
adults attending consecutively a CF out-patient clinic. Each of the participants
completed three questionnaires (Health Perception Scale; Health Locus of Control
Scale; Manchester Cystic Fibrosis Compliance Questionnaire) under the guidance of a
43
psychologist. The study concluded that worrying about CF, and the perception of
having little personal control over their disease progression encouraged adherence.
Adherence was self-reported, and the study claimed that patients who admitted to not
carrying out a treatment rarely lied. This finding corresponds with a similar finding
from a later review on adherence by Abbott and Gee (1998). However this finding has
been challenged by Bucks et al. (2009) in their cross-sectional study of 38 adolescents
who completed three self-administered questionnaires (Revised Illness Questionnaire
(IPQ-R); Beliefs about Medicines Questionnaire-Specific (BMQ-Specific); Cystic
Fibrosis Treatment Questionnaire (CFTQ)), who concluded that patients do lie
because they do not want to jeopardise their relationship with the members of their CF
healthcare team. However it was unclear how the researcher were able to come to
such a conclusion. It is also possible that inaccuracy in self-reporting adherence may
occur through lack of understanding, or instances of non-adherence are forgotten. The
study by Abbott et al., (1996) was vulnerable to bias as it could not record the views
of the non-attenders who may be the patient group who has the most difficulty
adhering to treatment, as they did not attend clinic. The study findings may also have
been biased by the influence of the psychologist who guided them when they
completed the questionnaires. Questionnaires rely on the honesty of the participants,
their memory and an assumed commonality of understanding of the terms used.
Abbott et al. (2009) in their review on adherence to treatment in CF, critically
evaluated 13 studies involving 747 participants and concluded that there was limited
evidence to support the view that health beliefs and perceptions of illness were
important predictors of adherence to treatment. The limited nature of these findings
may reflect the poor quality of the studies and the lack of sensitivity of the
measurement tools to record changes in behaviour, all of which are dependent upon
honesty, recall and accuracy in understanding the task. Although the data collection
methods covered a wide variety of approaches, they nevertheless indicated that health
beliefs and illness perception did have some influence on adherence behaviours.
These findings can be applied clinically, as understanding health beliefs can be used
to potentially predict adherence.
Coping with Cystic Fibrosis
Studies have shown that adults with CF do have problems coping with the enormous
treatment demands made on them, which can potentially influence their ability to
adhere to treatment (Daniels, 2010; Dodd & Webb, 2000; Pfeffer, Pfeffer, & Hodson,
2003). The studies on adherence in CF are almost totally cross-sectional and attention
needs to be given to the fact that adherence behaviours can vary over a period of time,
44
particularly during exacerbations which require high levels of adherence which are
more difficult to achieve (Daniels et al., 2011). In a study by Abbott et al. (2001), a
coping scale was developed and validated for the purpose of investigating the
relationship between coping styles and treatment adherence. The study used a crosssectional questionnaire and two sets of interviews. The aim of the study was to
develop a patient-derived self-report measure to evaluate the ways in which people
with CF cope with their disease. The study demonstrated that 65% of the
optimistic/acceptance group were adherent to physiotherapy compared to 33% in the
avoidance/coping group. A level of 65% of adherence to physiotherapy is high, and
the validity questionable, as studies have demonstrated that self-reporting frequently
results in over estimation and that percentages as an outcome measure need to be
treated with caution (Daniels, 2010; Myers & Horn, 2006). The study concluded that
adherence to treatment was influenced by a person’s coping style and that generally
optimistic acceptance and hopefulness were associated with greater adherence to
treatment. Gender differences have also been noted in the ability to cope with CF.
Patterson et al. (2008) in their study of 103 adolescents (10 – 21 year olds), which
used a self-report survey (Living with CF Questionnaire – LCFQ), identified that the
females found having CF to be more stressful than the males, which may compromise
their ability to adhere to physiotherapy treatment and so jeopardise their health
outcomes
2. 3. 3. Adherence to Physiotherapy Treatment in Adults with Cystic Fibrosis
Table 2. 5, reviewing the key evidence for adherence to physiotherapy treatment by
adults with CF is presented on p. 46-47.
There is a paucity of evidence into adherence to physiotherapy in adults with CF. To
date studies have been chiefly confined to children and their families. The findings
from these studies indicate possible factors that could influence adherence behaviours
but they cannot be directly applied to adults, as children are reliant on their
parents/carers to carry out their physiotherapy treatment and their anatomy and
physiology it different. Self-administered ACTs have been developed for adults so
they can be self-administered and would therefore be unsuitable for younger children.
45
Table 2. 5. Key papers relating to adherence to physiotherapy
TITLE
AUTHOR
YEAR
SUMMARY OF THE EVIDENCE
TYPE OF
ARTICLE
LEVEL
Cystic fibrosis patients’ views
and beliefs about chest
clearance and exercise
Carr et al.
1996
Descriptive
study
Patients’ views about physiotherapy and exercise were extremely positive. Adherence
can be facilitated by eliciting and understanding a patient’s views and beliefs when
negotiating a treatment programme with them. Optimum airway clearance and exercise
programmes need to be tailored to each individual’s needs and beliefs.
3
Treatment of cystic fibrosis in
adults
Hodson
2000
Descriptive
study
Specialised services need to be set up to deliver the best possible care. Reasons for
improved survival are multi-factorial. There is considerable scientific evidence to
support the use of postural drainage with an active cycle of breathing technique and for
use of the pep mask.
3
Clinical guidelines for the
physiotherapy management of
cystic fibrosis
ACPCF/CF Trust
2002
Descriptive
study
Studies are hampered by lack of long-term projects and the inability to conduct
randomised controlled trials. The effectiveness of airway clearance techniques are a
significant feature in adherence to treatment.
3
Practical management of cystic
fibrosis
Dodd & Prasad
2005
Descriptive
study
The efficacy of routine chest physiotherapy for milder and ‘asymptomatic’ individuals
continues to be debated and requires further research. Onerous daily programme of self
care. Exercise is an established part of of the physiotherapy programme.
3
Adherence to chest
physiotherapy in adults with
cystic fibrosis
Myers & Horn
2006
Survey
563 participants (39.8% response rate). Self-administered questionnaire. Adherent
29.5%; 63.2% partially adherent; 7.3% non-adherent. Conclusion – to carry out regular
airway clearance in a way that suits their lifestyle.
3a
Guidelines for the
physiotherapy management of
the adult, medical,
spontaneously breathing
patient
Bott et al.
2009
Meta-analysis
83 publications; 15 data sets; 475 participants. Outcome measure – standard lung
function tests. Insufficient evidence to confirm or exclude any differences between
CCPT and other airway dependent techniques in terms of respiratory function, but this
may have reflected insufficient evidence and lack of sensitivity in the outcome
measures.
1++
46
Adherence of adult cystic
fibrosis patients with airway
clearance and exercise
regimens
White et al.
2007
Survey
Adherence 70.2% to daily physiotherapy – a higher rate than preciously reported. Time
related factors most commonly reported reason for reduced adherence
3
Physiotherapy management
strategies for the treatment of
cystic fibrosis
Daniels
2010
Descriptive
With increased life expectancy treatment becomes more complex and time consuming.
Physiotherapy is balances precariously between lifestyle and adhering to effective
treatment The efficacy of treatment techniques needs further study. Patient
preferences need to be taken into account when planning programmes.
3
Standards of Care and Good
Practice for the Physiotherapy
Management of Cystic Fibrosis
ACPCF/CF Trust
2011
Descriptive
Review of the evidence of the evidence with recommendations for practice. There are
few valid and reliable studies for ACT making a meta-analysis difficult. Outcome
measures require further study. Recommendations for practice based on best available
evidence.
1+
47
Studies into adherence to physiotherapy in adults with CF have formed part of larger
research projects (Abbott et al.,1994; Conway et al., 1996; Sawicki et al., 2009)
investigating adherence to CF treatment in general, with physiotherapy being one of
several treatment components. Physiotherapy was identified in these studies as being
particularly difficult to adhere too. The studies used the survey method of selfadministered questionnaires to collect data on a wide spectrum of treatment modalities
for CF. The questions relating to physiotherapy gave only limited data as they were
few in number and not sensitive enough to illicit detailed and reliable information.
Plummer, Costall and Torry (2008) in their qualitative study into adherence to
treatment in adults with CF, interviewed 25 adults and 10 members of a multidisciplinary team. Physiotherapy was one component of the treatments being
investigated. The participants reported 50% adherence to physiotherapy, however
partial adherence was not accounted for and a definition of adherence was lacking,
making the study difficult to interpret.
Adherence behaviours investigated by Modi et al. (2006) involved 37 children and
their primary care givers. The study used a multi-method approach of diaries,
pharmacy re-fill history and electronic monitoring to record adherence, and concluded
that accurate means of measurement is important in developing effective interventions
to influence behaviour. Although electronic recording is accurate other methods rely
on honesty and recall. The use of pharmacy re-fill history cannot assume that
medications collected have been taken.
Quittner, Modi, Lemanek, Ievers-Landis and Rapoff (2008) in their systematic review
on methods of accurately recording adherence behaviour to medical treatment in
chronic disease by children, adolescents and their care givers, investigated empirical
evidence of 18 measures utilising three types of recoding adherence - self-report and
structured interviews, daily diary methods and electronic monitors. The study
commented on the innovative methods used and the opportunities for triangulation by
using two methods such as self-reporting and electronic monitoring to enhance
reliability and validity. The study concluded that in order to enhance adherence
behaviours further development of measurement methods is required so that health
outcomes can be optimised. As in the previous studies the findings cannot be directly
applied to adults but the conclusions are informative.
During the past 15 years there have only been three studies (White et al., 2007; Myers
& Horn, 2006; Carr et al., 1996) which have specifically investigated adherence to
physiotherapy in adults with CF, with only two studies (Myers & Horn, 2006; Carr et
48
al., 1996) being undertaken in the UK. The third study by White et al. (2007) was
conducted in Australia. The studies by Carr et al. (1996) and White et al. (2007)
included chest physiotherapy and exercise while the study by Myers and Horn (2006)
focused on chest physiotherapy alone. All three studies used self-administered
questionnaires to collect data, which have generally low response rates and
consequent biases (Oppenheim, 1992). The study by Carr et al. (1996) investigated to
what extent the efficacy of physiotherapy and health beliefs influenced the ability to
adhere to physiotherapy treatment.
The use of questionnaires in investigating adherence to physiotherapy for adults with
cystic fibrosis
The study by White et al. (2007) used an adapted Manchester Cystic Fibrosis
Compliance Questionnaire (MCFCQ). It was piloted to two people with CF as a
means of testing its clarity, ease of completion and content. This is an inadequate
number for a pilot study as it originated in the UK and the study was under taken in
Australia, so cultural differences may have occurred in the terms used. The robustness
of the findings was weakened as it cannot be assumed that there is a commonality of
understanding across cultures.
The self-administered questionnaire used by Myers and Horn (2006) was based on
wording from two questionnaires used in studies on adherence and chronic disease
(Cooke, Myers, & Deraksham, 2003; Griva, Myers, & Newman, 2000) which were
not content specific for CF. This self-administered questionnaire, which collected
quantitative and qualitative data, was not piloted which therefore compromised its
validity and reliability as the participants may not have fully understood the questions.
The study’s validity and reliability was further compromised by a failure to describe
the tools used to specifically design their questionnaire which would make the study
difficult to reproduce. The ability of a self-administered questionnaire to collect
qualitative data is limited compared to an interview where the interviewer can elicit
rich detail through sensitive questioning and prompts.
In the Carr et al. (1996) study a self-administered questionnaire, designed by the
researchers, was issued to all the study participants, to elicit their views on the
efficacy of physiotherapy treatment and the influence of their health beliefs on their
ability to adhere to physiotherapy treatment. The study participants did not contribute
to the design of the questionnaire, thereby compromising its validity and reliability as
the questions designed by the researchers may not have elicited full responses. The
participants needed to be involved in the design of the research tools to ensure that
49
they could describe their experiences in their own words, as the collection of
quantitative data alone would not take into account their views on the effectiveness of
physiotherapy and the impact that their health beliefs had on their ability to adhere to
physiotherapy treatment. The validity and reliability of the study was further
compromised because a pilot study was not undertaken to ensure that the participants
correctly understood the questions in the questionnaire.
Self-administered questionnaires specifically investigating adherence to
physiotherapy treatment in adults with CF, and studies investigating adherence to CF
of which physiotherapy was one component, demonstrate wide ranges in response
rates. Tables illustrating some examples are presented below.
Table 2. 6. Response rates to questionnaires specifically investigating adherence to
physiotherapy in cystic fibrosis
Response Questionnaire
Rate % Design
54%
Self-Admin/Postal
Adherent
Carr et al. (1996)
Study
Pop
94
N/R
Partially Non –
Adherent Adherent
N/R
N/R
Myers & Horn (2006)
563
39.8%
Self-Admin/Postal
29%
N/R
N/R
White et al. (2007)
57
67.9%
Self-Admin/
Researcher present
36.8%
33.4%
29.4%
Author
*N/R – Not Recorded
Table 2. 7. Response rates to questionnaires on adherence to treatment in cystic fibrosis
of which physiotherapy was one component
Author
Response Questionnaire
Rate % Design
89.5
Self-Admin.
Adherent
Sawicki et al. (2008) 204
69
Llorente et al. (2008) 34
100
Bucks et al. (2009)
100
Abbott et al. (1996)
Study
Pop.
60
38
47%
Partially
Adherent
10.9%
NonAdherent
26.8%
Self-Admin.
47.4%
32.1%
20.5%
Self-Admin
Researcher present
Self-Admin
Researcher present
38%
17.6%
20.6%
N/R
N/R
N/R
The study by White et al. (2007), where the researcher personally approached each
potential participant, had a 67.9% response rate (n = 84) while Carr et al. (1996), who
sent their postal questionnaires to a randomly selected clinic population (n = 94), had
a response rate of 54%. The questionnaire used in the Myers and Horn (2006) study
was sent to everyone over the age of 18 on the UK CF Trust’s mailing list (n = 1407)
which resulted in 563 (39.8%) usable replies. This study did not define what they
considered chest physiotherapy or adherence to be, which compromised the accuracy
of the results. The Myers and Horn (2006) study concluded that some participants
50
perceived physiotherapy to be ineffective and/or time consuming, and they only did it
when they were unwell. The self-administered questionnaires used in these three
studies, specifically investigating adherence to physiotherapy, may have been biased
due to self-report being unreliable, and in the Myers and Horn (2006) study, which
had a low response rate, the validity and reliability were challenged.
Personally approaching potential participants resulted in a higher response rate, giving
greater reliability and validity to the White et al. (2007) study. In the studies by
Llorente et al. (2008) and Bucks et al. (2009), which involved a researcher
administering the questionnaire to the participants, a response rate of 100% was
reported giving greater reliability and validity to their results. However, having a
researcher present may have also biased the results, as the answers would no longer be
anonymous and the participants may not have felt able to fully express their views.
When response rates are low inevitable biases occur as the views of those who decide
not to take part are unaccounted for.
Reported level of adherence to physiotherapy for adults with CF
In the three studies specifically investigating adherence behaviours in physiotherapy
treatment, Myers and Horn (2006) reported an adherence rate of 29.8% but did not
record the percentage of participants who were non-adherent or partially adherent;
Carr et al. (1996), did not specifically record the level of adherence to physiotherapy
treatment in their study as they were investigating whether health beliefs influence
adherence behaviours; while White et al. (2007) reported rates of 36.8%, 33.4% and
29.8% for adherent, partially adherent and non-adherent behaviours respectively.
Conway et al. (1996) reported, in their “snap shot” survey into adherence to treatment
in CF, of which physiotherapy formed one component, that 33% of their patient group
had good adherence 18% moderate and 27% poor which is similar to that found by
White et al. (2007).
Interestingly the White et al. (2007) study recorded that 27% of patients preferred
exercise to ACT and 13% of patients reported that chest physiotherapy made no
difference. However this study classified participants not as “adherent” but as whether
they had an “acceptable frequency of treatment,” and it did not accurately account for
partial adherence, so when a study participant was partially adherent they were
classified as adherent. Only 36.8% of study participants were fully adherent with
33.4% missing an occasional treatment. The figure of 36.8% adherence to chest
physiotherapy is similar to that of Conway et al. (1996). The White et al. (2007) study
considered exercise to be a form of airway clearance, but was not a substitute for
51
using ACTs. In their study population of 54/57 (91.2%) participants undertook regular
exercise but as this study was conducted in Australia, climatic and cultural differences
may have resulted in a high uptake of exercise.
The Carr et al. (1996) study, which investigated the participants’ perception of the
effectiveness of physiotherapy alongside their health beliefs, and the impact that these
two factors had on adherence behaviours, found that health beliefs did influence the
ability to adhere to physiotherapy treatment as those participants with positive health
beliefs were more adherent to treatment.
Studies into adherence to chest physiotherapy are difficult to compare due to the lack
of consensus as to what constitutes chest physiotherapy and a failure to account for
adherence varying over a period of time. Studies also lack rigor, validity, reliable
outcome measures and frequently rely on percentages, which can have a
disproportionate impact, making the results unreliable. The inconsistency in these
studies into adherence indicate that further investigation needs to be carried out to
define adherence, treatment frequency, duration and measurement tools, and to
develop strategies to address them.
2. 3. 4. Exercise in the Management of Adults with Cystic Fibrosis
Table 2. 8, reviewing the key evidence for the role exercise plays in the management
of adults with CF is presented on p. 53.
The studies selected focus on the role of exercise in CF in relation to its influence on
airway clearance and as part of a healthy lifestyle. Initially research into
physiotherapy treatment for CF focused on chest physiotherapy, but in the 1980/90’s
studies began to emerge looking into the effects of exercise on facilitating airway
clearance, and promoting a healthy lifestyle (ACPCF/CF Trust, 2002). All people
with CF should participate in regular physical activity (ACPCF/CF Trust, 2011; CF
Trust, 2011a) and it should be part of their routine physiotherapy programme.
Exercise programmes for people with CF improve cardio-respiratory fitness, morale,
lead to a higher degree of perceived competence, improve self-esteem and quality of
life (Bradley & Moran, 2011). Exercise should complement chest physiotherapy but
not be a substitute for it.
52
Table 2. 8. Exercise in the management of cystic fibrosis
TITLE
AUTHOR
YEAR
TYPE OF
ARTICLE
SUMMARY OF THE EVIDENCE
Effect of exercise and
physiotherapy in aiding sputum
expectoration in adults with CF
Salh et al.
1989
Cross over trial
2 groups; 31 participants; different combination of chest physiotherapy and exercise concluded that
for exercise was complimentary to airway clearance.
The benefits of exercise
combined with physiotherapy in
the treatment of CF
Bilton, Dodd, Abbott
& Webb
1992
Cross over trial
18 participants in 4 different treatment of chest physiotherapy and exercise. Concluded that
exercise enhanced airway clearance but was not a substitute for it.
2-
Effect of addition of exercise to
chest physiotherapy on sputum
expectoration and lung function
in adults with CF
Baldwin et al.
1994
RCT
Exercise itself leads to more sputum expectoration than occurs at rest and further increases sputum
clearance afforded by physiotherapy. Neither physiotherapy nor exercise have significant effects
on lung function.
1-
Individualised exercise training
in adults with cystic fibrosis: a 1
year randomised controlled trial
Moorcroft, Dodd,
Morris, & Webb
2004
RCT
Three sessions per week of exercise based on individualised preferences (n = 30) or to a control
group (n = 18). Pulmonary function improved. The primary outcome measure was improved fitness
as assessed by change in blood lactate concentration. Secondary outcome measurements showed ↓
heart rate and pulmonary function. Conclusion - exercise programmes should be encouraged as an
important component of care in cystic fibrosis.
2-
Efficacy of exercise in the
management of CF
Shoemaker, Hunt &
Arndt
2008
Systematic
Review
12 studies; 374 participants; effects of exercise unclear but appears to have a preservation effect of
pulmonary function; not possible to draw a conclusion regarding the impact of exercise on
hospitalisation and QoL.
1-
Effects of exercise on respiratory
flow and sputum properties
Dwyer, Alison,
McKeough,
Daviskas, & Bye
2010
Cross over trial
14 participants, ventilation and respiratory flow measured during 20 minuets of exercise. Ease of
expectoration and sputum properties measured before and after. Conclusion – treadmill exercise
appears to improve expectoration more than cycling. Further evaluation required before treadmill
exercise promoted as an adequate ACT
2-
Physical training to improve
exercise capacity for people with
CF
Bradley & Moran
2011
Systematic
Review
7 studies; 231 participants; short term studies; meta analysis not possible due to different study
designs. Conclusion no evidence to discourage exercise for people with CF
1++
53
LEVEL
2-
In a comparative study by Salh et al. (1989), the role of exercise in aiding sputum
expectoration in patients with CF and the comparative roles of exercise and
physiotherapy in sputum expectoration were assessed. In the first arm of the study 19
adult participants undertook a two month programme of home exercise using a cycle
ergonometer. Of the 12 patients completing the study, peak work capacity, maximum
oxygen consumption, and maximum minute ventilation had increased significantly by
the end of the exercise programme, although the increase in daily sputum weight was
not significant. In the second arm of the study (n = 10) more sputum was expectorated
during and after physiotherapy than during and after exercise. The study concluded
that exercise may have a role in aiding sputum expectoration in patients with CF but
should not be considered as a replacement for physiotherapy. Sputum volume was
used as an outcome but this can be unreliable because of contamination with saliva. A
cross over study by Bilton, Dodd, Abbott and Webb (1992) involving 18 participants
in four different treatment combinations of chest physiotherapy and exercise came to
a similar conclusion. The validity of this study was reduced as it was only of four days
duration and it again used sputum weight as an outcome measure, which can be
unreliable for the reason previously outlined. The use of the forced expiratory volume
in one second (FEV1) for lung function measurement would have been a more reliable
indication of improved airway flow. A cross over study involving 8 participants, by
Baldwin, Hill, Peckham and Knox (1994), investigated the effects of exercise on
sputum production and lung function by adding an exercise programme to the
participants’ airway clearance programme on two consecutive days. The study
concluded that exercise enhanced sputum clearance. The validity of this result is
reduced as the study intervention period was of short duration, lasting only two days,
and sputum weight was used, which is an unreliable outcome measure.
A systematic review by Shoemaker, Hurt and Arndt (2008), on the efficacy of
exercise in the management of CF, included 12 studies with a total of 274 participants
and concluded that there was strong support for the use of aerobic and resistance
training to improve aerobic capacity and strength, but the effect on exercise training
on pulmonary function and health related QoL, hospitalisation and healthcare
utilisation was unclear. This systematic review was criticised by the Centre for
Reviews and Dissemination for its lack of methodological rigor in view of the author
reporting significant results when it was not always clear whether the authors were
referring to statistically significant changes within groups, resulting in the conclusions
being unreliable.
54
In a study by Dwyer, Alison, McKeough, Daviskas and Bye (2010) on the effects of
exercise on respiratory flow and sputum properties in cystic fibrosis the methodology
involved a three day cross-over study of 14 participants who used a treadmill and a
cycle exercise to establish if exercise enhanced airway clearance. The study
concluded that the improvement in expectoration may have been brought about by
higher ventilation and respiratory flow during exercise and in particular the treadmill
appeared to be more effective in facilitating airway clearance than cycling. The study,
however, did not ascertain the hydration state of the participants nor of their airways.
The study was of short study duration comprising of three days and the results may
not be sustained over a longer period of time. The study was not postulating this
outcome as indicative of exercise being and used as an airway clearance technique
without further investigation.
A Cochrane Review by Bradley and Moran (2011) investigated the impact of physical
training on people with CF and reviewed seven studies involving 231 participants. A
meta-analysis was not possible due to the different study designs. The short term
studies did not demonstrate differences between treatments and there were not enough
studies in the review to compare aerobic training to anaerobic training or a mixture of
these two. The review was limited by the small size of the study populations, the short
duration of the studies and the outcome measures which needed refining, but
concluded that there was no evidence to actively discourage exercise for people with
CF, and it may improve QoL in the short term. Current guidelines on the
physiotherapy management of CF from the ACPCF/CF Trust (2011) and the
Association of Chartered Physiotherapists in Respiratory Care (ACPRC)/British
Thoracic Society (BTS) (Bott et al., 2009) supports the use of exercise for people with
CF for its benefits of general well being and the enhancement of airway clearance, but
there was a low grade of evidence supporting this opinion.
Although there is a lack of rigor and poor methodology in the literature specific to CF,
exercise is encouraged by the DoH (2010) for all members of the general population
thereby making it an activity which people with CF can join in with their peers, which
can contribute to optimising adherence (Moorcroft, Dodd, Morris, & Webb, 2004).
2. 3. 5. Self-Management for adults with cystic fibrosis
Due to increasing life expectancy, self-management studies on adults with CF is an
emerging concept and to-date there is only one study that has been undertaken
55
(Sawicki et al., 2008). Self-management programmes have been developed for
children and their families but they are not directly applicable to adults. Currently a
Cochrane Review is being conducted into self-management programmes for children
with CF and is due to report in 2012. This study may not be generalisable to adults,
but its conclusions will be informative.
In the United States of America (USA) considerable work was carried out by
Bartholomew et al. (1997; 1993; 1991; 1988) on self-management programmes for
families with a child affected with CF. In the early 1990s Bartholomew et al. (1993)
developed performance objectives for the self-management of CF. They recognised
that the self-management of a chronic illness, such as CF, would require the patient to
perform several cognitive and behavioural tasks, and patients could be empowered
through a self-management programme to undertake behaviour such as selfmonitoring, reporting, decision making and planning. They also highlighted the need
for education in health care programmes to receive greater attention. Although giving
indicators for the development and effectiveness of self-management programmes for
children and their families the conclusions cannot be applied to adults, where chest
physiotherapy is focused on independence and self-administrated techniques. Downs,
Roberts, Blackmore, Le Souel and Jenkins (2006) conducted a multi-centred,
randomised, controlled trial investigating the effectiveness of a self-management
programme called “Airways” in 62 children (6 – 11 years) with CF and their
caregivers, and found that adherence had increased following the programme but this
had not been maintained when assessed at a 12 month follow up. The study was
hampered by the limitations of objectively recording the treatment that had been
carried out as it relied on self-reporting, honesty and the re-call of the parents/carers.
The study by Sawicki et al. (2008), investigating self-management for adults with CF,
was developed as part of the Project on Adult Care CF (PAC_CF) to investigate the
burden of all CF treatment, which is a challenge to self-management. The study used
a self-administered questionnaire which was completed by 204/294 participants and
formed the 6th survey wave of this longitudinal study. Self-reporting as a means of
monitoring adherence is prone to inaccuracies which can compromise the validity and
reliability of the outcomes, as discussed above. The study concluded that the high
treatment burden for CF contributed to the day-to-day patient decision making process
and the knowledge of how they made their decisions was a step towards
understanding patient-based disease management.
Self-Management Physiotherapy Programmes for Adults with CF
56
To date no self-management physiotherapy programmes for adults with CF have been
developed.
2. 3. 6. Summary of Background Literature Search
Physiotherapy is an integral part of the daily management of CF (ACPCF/CF Trust,
2011; Bott et al., 2009;). Although five Cochrane Reviews (Elkins et al., 2009; Main
et al., 2009; Morrison & Agnew, 2009; Robinson et al., 2010; van der Schans et al.,
2009) concluded that in the short term ACTs are effective in airway clearance, and a
study by Pryor et al. (2010) demonstrated their long term benefits, the physiotherapy
element of treatment remains one of the most difficult to adhere to and has one of the
lowest rates of adherence (Abbott et al., 2009; Daniels, 2010; Dodd & Prasad, 2005).
Studies into adherence to physiotherapy treatment (CF Trust, 2002; Main et al., 2009;
van der Schans et al., 2009), are hampered by a lack of a universally accepted
definition, the inability to conduct double blind RCTs, short time frames, the
limitations of measurement techniques, the lack of a benchmark of what is an
acceptable level of adherence for physiotherapy treatment and a limited interest in
patient preferences.
It is essential that people with CF are educated to have sufficient knowledge and skills
to successfully cope with self-management (Bucks et al., 2009; Sawicki et al., 2008).
Self-management is an important means of ensuring that people with CF are
empowered, informed and sufficiently knowledgeable to make autonomous decisions
about their physiotherapy treatment. The influence of self-management programmes
on the ability to adhere to physiotherapy treatment for adults with CF has yet to be
explored. It is believed that this study is unique, as it seeks to increase physiotherapy
knowledge about the problems of adhering to physiotherapy treatment for adults with
CF and to develop an educational strategy in the form of a SMPP to potentially
improve it. This exploratory study aims to answer the research question by means of
postulating a new model of clinical practice through the development and evaluation
of the effectiveness of a SMPP in optimising the ability to adhere to treatment.
57
CHAPTER 3
3.0
METHODOLOGY
Introduction
This chapter outlines the theoretical methodological approach that was selected to
meet the research aims. How this theoretical model was applied to the to the research
process is described in detail in Chapters 4 and 5.
Chapter three is divided into five sections:
3. 1
Action Research
 Action Research Typology – Professionalising
3. 3
Ethics
3. 4
Population and Sampling
3. 5
Recruitment
3. 1.
Action Research
Introduction
The study aims to identify the problems adults with CF have in adhering to
physiotherapy and then sets out to address these problems by developing an
educational intervention in the form of a new model of clinical practice by using a
Self-Management Physiotherapy Programme (SMPP). The aim of the SMPP is to
improve adherence to physiotherapy treatment for adults with CF. The study then
proceeds to evaluate the usefulness of the SMPP.
In order to investigate the problems people with CF have in adhering to treatment, it
was important to select a methodology that gave them a opportunity to express in their
own words what problems they experience with adhering to physiotherapy, and to
engage and empower them to be involved in the research process so that they
contribute to finding a solution. By taking responsibility for identifying their problems
and seeking a solution a successful outcome would be more likely to be achieved.
This research project sits within the social science paradigm. A variety of qualitative
and quantitative research frameworks were considered in order to provide a flexible,
reflective and responsive method to systematically investigate how to optimise the
ability of adults with CF to adhere to physiotherapy treatment, with the aim of
58
developing a new model of clinical practice. After careful consideration, an action
research approach was initially adopted.
3. 1. 1. Action Research Approach
The Action Research approach uses a cyclical process which enables the findings
from each stage to inform the development of the whole direction of the study. It is
best described as a dynamic, democratic and problem-solving change intervention
which provides a flexible methodology that enables the researcher to adopt a
participatory approach by involving the participants in both the change and the
research process (Hart & Bond, 1996; Lincoln, 2001; Reason & Bradbury, 2001;
Waterman, Tillen, Dickson, & de Koning, 2001) It is particularly suited to being
applied to NHS heath care settings (Meyer, 2000) as the action research process
begins with identifying problems and sets out to develop potential solutions to
improve practice. Action Research narrows the “theory-practice” gap and is gaining
prominence as the NHS strives to achieve evidence-based health care that delivers
patient focused high standards of clinical care in a cost effective and safe environment
(DoH, 2008).
Action research was first conceptualised by Kurt Lewin (1947, 1946) in the USA as a
cycle of interventions to bring about change, with particular emphasis on group
dynamics and the participation of all stakeholders. The concept has been developed
and adapted by educationalists such as Kemmis and McTaggart (1981) who viewed it
from a social science perspective and Stenhouse (1985) who set it within the
framework of an educational environment. Reflection, which has been defined by
Schon (1983) as a process concerned with thinking about action, is an integral part of
the dynamic action research approach as each part of the process informs the
following stages. In its simplest form action research involves four parts; planning,
action, evaluation and reflection with repeated cycles, as outlined by Lewin (1946).
The four stages form a continuous change process which influences all stages of a
project. (Fig. 3. 1.)
59
THE ACTION RESEARCH CYCLE
PLAN
REFLECTION
ACTION
EVALUATION
Fig. 3. 1. Lewin’s (1946) sequence of action steps comprising of four stages
Action research used in a health care setting enables a research enquiry to be
undertaken with the aim of improving clinical practice through the partnership, cooperation, participation and empowerment of the participants whose problems are
being investigated. The four stages of the action research cycle are outlined in greater
detail below: The Action Research Cycle
The cyclical process of action research begins with the identification of the problem
and typically has four parts:
Part 1. Plan (identifying the problem; developing the intervention; preparation for
change)
Part 2. Action (implementation of change – implementing the intervention)
Part 3. Evaluation (impact of change process)
Part 4. Reflection (assessment of effectiveness and recommendations)
Each of the four parts is described in detail below.
Part 1 - Plan
The first part of the action research cycle is that of “Planning” which is concerned
with ‘what to do’. Within the planning phase, there are three further sub-stages:-
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(i) Identifying the problem
(ii) Development of an innovation
(iii) Preparation for change
(i) Stage I – Identification of the Problem
Introduction
The problem under investigation in this study needed to be identified by the
participants so that they were engaged and empowered in the process of change and
improvement. The researcher used reflective practice (Greenwood, 1984; Schon,
1983) from personal experience to contribute to the identification of the problem. In
order to accurately identify the problems and contribute to the design of a new
intervention to potentially resolve them, decisions were made about methodological
approaches and appropriate data collection methods so that the data collected was
accurate, reliable and valid. Because action research involves the participants and
combines both inductive and deductive methodological approaches it was initially
chosen for this study.
Inductive and Deductive Approaches


The Inductive Approach
An inductive approach starts with specific observations and measures which begin to
form patterns and regularities from which it is possible to formulate some tentative
hypotheses which are then explored with the result that the process ends up with the
development of some general conclusions or theories (Newell & Burnard, 2011;
Parahoo, 2006). Inductive reasoning (Cohen, Manion, & Morrison, 2011), by its very
nature, is more open-ended and exploratory, especially at the beginning. An example
of the inductive approach is qualitative research which is the examination, analysis
and interpretation of observations for the purpose of discovering underlying meanings
and patterns of relationships, including classifications of types of phenomena and
entities, in a manner that does not involve mathematical models (Newell & Burnard,
2011; Polit & Beck, 2006). The best-known qualitative methods of inquiry include indepth interviews, focus groups, and participant observation. Qualitative methods can
also provide a dual function by seeking an in-depth understanding of human
behaviour, as well as perceived reasons that govern that behaviour (Polit & Beck,
2006). In this study the semi-structured interview was chosen as it gave the
61
participants an opportunity to express in their own words the problems they
experience in adhering to physiotherapy, and to use that information to contribute to a
solution. How the semi-structured interview was applied to the study is outlined in
Chapter 4. 

The Deductive Approach
Deductive reasoning is more narrow in nature and is concerned with testing or
confirming hypotheses. Deductive research works from the more general to the more
specific. The deductive approach in this study used a cross-sectional survey, designed
and issued in two parts before and after the intervention, to monitor any changes that
may have occurred as a result of the a ‘top-down’ approach (Parahoo, 2006; Topping,
2006). It begins with thinking up a theory about a topic of interest, which then
narrows down to a more specific hypothesis that can then be tested. This process is
further narrowed down when observations are collected to address the hypotheses.
This process ultimately leads to testing a hypothesis with specific data as a
confirmation (or not) of the original theories. An example of a deductive approach is
quantitative research which in the social sciences refers to the systematic empirical
investigation of phenomena, and their relationships (Newell & Burnard, 2011). The
objective of quantitative research is to develop and employ mathematical models,
theories and or hypotheses pertaining to phenomena and has its roots in a positivist
framework (Richardson, 1996). It can be a useful approach for giving precision
measurements of when, how much and how often. In social sciences quantitative
research is often contrasted with qualitative research.
Combining Qualitative and Quantitative Data
Combining qualitative and quantitative data can give a greater understanding of the
findings and the issues involved. For example a person’s behaviour may be influenced
by the impact of their disease severity. Disease severity is measured in quantitative
terms, e.g. total lung capacity is measured in litres, while exploring a person’s
behaviour requires a qualitative approach. A multiple approach to data collection can
act as a form of triangulation (Topping, 2006). Triangulation provides completeness
of data as the topic being investigated is being measured in different ways (Cohen et
al., 2011). It enhances the validity and credibility of a study as it can give cross
verification of the results and findings. In this study the problem was investigated
using two approaches, i.e. semi-structured interviews (inductive) and a survey
(deductive) in the form of a questionnaire. This dual approach enabled the outcomes
62
from each data collection method to act as a form of validation, as the same problems
were identified by different means.
(ii) Stage II - Development of an Intervention
Having identified the problem, which in this study is the problems adults experience
in adhering to physiotherapy, a suitable intervention needs to be developed to
potentially bring about a change in behaviour or a situation, with the aim being to
contribute to the resolution of the problem. The participants whose problem was being
investigated needed to be actively involved in the development of the innovation and
its implementation so they were engaged and empowered in the change process.
However in a healthcare setting, action research can have limited involvement for the
participants due to it being process driven, and the professional having greater clinical
knowledge (Meyer, 2006).
(iii)
Stage III - Preparation for Change
The aim of an action research study is to facilitate a positive change in a situation or
behaviour in order to bring about an improvement (Hart & Bond, 1996). In action
research, preparation for change includes engagement of the participants and the
preparation of the planning stages of the project. By actively involving the
participants in the research process they become engaged in the development and
design of the study. The participants are actively engaged in the identification of the
‘problem’ or ‘situation’ in which they are situated by means of effective
communication methods such as focus groups or in-depth interviews. By consenting
to participate in the research process it demonstrates a potential willingness to change
and contributes to a greater understanding of the problem or situation being
investigated (Cohen et al., 2011). This involvement also gives the participants
‘ownership’ of the research process, encourages commitment to it and prepares them
for the change processes. Partnership between participant and researcher can empower
the participant, thus facilitating change. Continual engagement by disseminating
information to the participants throughout the different stages of the research process
can also facilitate the change process, as the participants receive incremental feedback
during their involvement.
Part of getting ready for change is the careful planning of the actions which will
facilitate the change process, minimise potential disruptions and ensure a more
successful outcome. Preparation for change can involve:

Obtaining funding
63

Seeking of permission from an ethics committee to undertake a study

Creating a willingness to change – this is dependent on the participants perceiving
the need to change by being empowered and engaged in the change process.
Once the problem has been identified and the intervention developed, the action
research process moves on to the second part, the ‘Action’, which is the
implementation of the intervention.
Part 2 - Action
The second part of the action research cycle is when the implementation of the change
innovation or ‘action’ takes place, with the intention of bringing about a change for
the better in behaviour or in a situation. The change intervention is participatory,
dynamic and practical and in a health care setting is part of change management to
bring about practice development (Meyer, 2006). It is important that the participants
understand the need for change and are engaged and empowered to actively contribute
to the change process. The change process requires them to make changes in their
own behaviour in order for the ‘action’ to be successful. Change can also occur when
the individual participant sees the need to change and actively seeks to bring it about.
In this study the action was the SMPP, the aim of which was to optimise the ability to
adhere to physiotherapy treatment and, in doing so improve healthcare outcomes,
reduce healthcare costs and improve QoL.
Part 3 - Evaluation
The third part of the action research cycle is concerned with evaluating the impact of
the change process (Waterman et al., 2001). The purpose of evaluation in action
research is to establish the effectiveness of the change process by critically appraising
the change process, the measurement tools and the outcomes. The definition and
assessment of ‘change’ needs to be carefully considered so that the tools used to
collect data are sensitive enough to register any changes which may have occurred.
The occurrence of ‘change’ is not just dependent on the full implementation of an
innovation. It is still valuable to collect data in circumstances where partial change
has been achieved, or change which has taken place over a period of time, or indeed
no change has occurred (Hart & Bond, 1996). Even if a partial change or no change
has occurred this is still relevant as it can contribute to the critical analysis of the
study, inform future cycles of intervention and add to the knowledge and
understanding of the topic.
64
Although change may have occurred, it is the effectiveness of the ‘impact’ brought
about by the innovation which is reviewed in the evaluation. ‘Impact’ has been
defined as the ‘lasting effect or influence’ (Waterman et al., 2001, p. 27) of an
intervention and is part of a change management process. Change management
(Gerrish, 2006; McKenna, Hasson, & Keeney al., 2006) is the process during which
changes to a system are implemented in a controlled manner by following a predefined framework. How the ‘impact’ of the change is reliably measured is critical to
the evaluation process because in action research it can be difficult to attribute
outcomes and impacts to the action research process if the methodology and tools
used to collect the data are not sensitive and valid enough to enable evaluation to take
place.
Part 4 – Reflection
Reflection is an integral part of the cyclical nature of the action research process. It is
a process whereby reflection on an experience (Kolb, 1984; Schon, 1991) can be used
to improve action and professional practice, which in the case of this study is
physiotherapy clinical practice. It is the last part in the action research cycle and is
concerned with assessing the effectiveness of the research process, its implementation
and the ‘action’, in order to make recommendations for improvement in professional
practice (Hart & Bond, 1996). Reflection is concerned with identifying what
differences the study made to clinical practice and what could be done differently
when developing the next cycle of planning, intervention, implementation and
evaluation.
Reflection requires the use of critical thinking skills in order to assess how effective
the action research process has been. Critical thinking seeks to ‘think beneath the
surface’ in a logical and fair way and in doing so, questions information, conclusions
and points of view (Paul & Elder, 2006). Critical thinking involves determining the
meaning and significance of what is observed, expressed, inferred or put forward as
an argument, and then determines whether there is adequate justification to accept the
conclusion as true. It requires the researcher to ‘step back’ and use their knowledge,
experience and judgment of the evidence base to form a rational opinion which can be
potentially incorporated into professional practice. In action research the production
of research is not viewed as separate from developments in practice.
To accommodate the complex situation of the ‘real world’, action research typologies
have been developed to give a range of flexible approaches to undertaking action
research.
65
3. 2. Selecting the Action Research Typology - Professionalising
In order to accommodate a wide range of complex ‘real world’ situations, many
different typologies have been developed within the action research framework, with
each one reflecting a different approach to the action research process (Reason &
Bradbury, 2001). Hart and Bond (1996) have attempted to formally classify
approaches and activity by developing a typology which encompasses a whole range
of approaches and practices each grounded in a different tradition. Their typology
distinguishes four types of action research - Professionalising, Experimental,
Organisational, and Empowering - each with seven distinguishing criteria (Appendix
E). Their types are the ideal and not prescriptive of action research. All four types
display the seven distinguishing characteristics: 1. an education focus; 2. problem
orientated; 3. change intervention; 4. aims at improvement and involvement; 5. deals
with individuals as members of a group; 6. involves cyclical processes; 7. founded on
collaboration. Hart and Bond (1996) developed their typology in order to retain a
distinct identity of action research while spanning the spectrum of research
approaches. It attempts to clarify action research types by avoiding the problems
associated with narrow definitions (Reason & Bradbury, 2001; Waterman et al.,
2001).
The typology selected for this study was the ‘Professionalising’ typology (Fig. 3. 2.,
p.67) since its characteristics of being professionally and process led, involving the
use of reflective practice, and seeking to improve professional practice on behalf of
the users (Hart & Bond, 1995) was most suited to achieve the aims of this exploratory
study.
Professionalising Typology
The professionalising typology is based on the assumption that the experts have
greater experience, knowledge, and theoretical resources than the participants, who
act at the level of providing ‘on the ground feedback’ within fixed parameters. The
‘Professionalising’ typology is used when there is a need to ‘test’ the effectiveness of
a particular pre-defined intervention. The relationship between researcher and
researched in action research gives emphasis to the concept (Heron, 1996; Reason &
Bradbury, 2001) that research is carried out ‘with’ and ‘for’ the participants rather
than ‘to’ them. In reality this concept is difficult to implement in a health care setting
as there is an unequal balance of power in the researcher-participant relationship
(Meyer, 2000). In the ‘Professionalising’ typology there is an assumption that the
‘experts’ have a greater knowledge and experience. This inequality of knowledge and
66
experience means that the participants become involved in the study but not as equal
partners with the professional. Even when egalitarian outcomes are sought, action
researchers still actively facilitate change in others. By utilising critical thinking skills,
which are required in reflective practice, the researcher is able to take the “imbalance”
between the patient and the professional into account when facilitating change. The
key features of the Professionalising Typology are outlined in Fig. 3. 2.
Distinguishing
Criteria
Educative Base
Problem Focus
Change
Intervention
Improvement &
Involvement
 Reflective practice
 Enhancing professional control and the individual’s ability to
control the work situation
 Empowering professional groups; advocacy on behalf of
patients/clients
 Practitioner focused
 Problem defined by a professional group; some negotiation
with users
 Contested professionally determined definitions of success
 Professionally led - Pre-defined - Process led
 Towards improvements in practice defined by professionals
and on behalf of the users
Fig. 3. 2. Professionalising typology - key features (Hart & Bond, 1995, p. 41)
The emphasis in the ‘Professionalising’ typology is with the professional seeking a
change in their practice in order to bring about potential improvement for the benefit
of the participants. The professional can use reflective practice to identify the
problems in the first instance, however an improvement or change cannot be achieved
without the willingness of all the participants to become involved (Meyer, 2000) and
collaborate in the change process. In this study the ‘Professionalising’ typology
incorporates reflective practice by the researcher to facilitate change management in
order to improve professional practice for the benefit of the participants. How is was
applied to the study is outlined in Chapter 4, p.83..
In action research it is through the use of reflective practice that the researcher is able
to critically appraise and evaluate the usefulness of the methodologies, results and
findings so that a balance of perspectives is achieved. It is also important for action
researchers to recognise the vulnerability of the participants (Parahoo, 2006).
Participants are encouraged to think of themselves as being equal partners with the
professional, although they may not have the knowledge or skills to be truly equal.
67
The researcher in this study was also the practitioner, and consequently uniquely
placed to use reflective practice from her own clinical experiences to take the side of
the participants, help them understand their real situation and show ways of change
and ‘liberation’ (Sarantakos, 1998, p. 113).
Summary for Action research
Lack of adherence to physiotherapy is a well recognised problem in CF. The aim of
this study was to explore whether adherence to physiotherapy treatment in adults with
CF was optimised using a new model of clinical practice in the form of a SMPP. The
action research approach was chosen as it is a cyclical process which enabled the
findings from each stage to inform the development and direction of the study, and
involved the people affected by the problem being investigated to participate in
finding a solution to their problems.
The action research approach used in this study was informed by the
‘Professionalising’ typology and follows the four parts of the action research cycle.
This typology (Hart & Bond, 1995) was selected as it is concerned with the
improvement of professional practice on behalf of the users and is carried out when
there is a need to ‘test’ the effectiveness of a particular pre-defined intervention,
which in this study was the SMPP.
How the action research process was applied to the study is outlined in Table 3. 1.
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Table 3. 1. Key stages of the study
Stages of the Study
Study Population Selected
Actioned
By
R
Inclusion and exclusion criteria applied
Study population recruited
R
PLAN
First Set Semi-Structured Interviews
CP
Analysis of First Set of Semi-Structured Interviews
R&CP
Second Set of Semi-Structured Interview
Analysis of Second Set of Semi-Structured Interviews
CP
R & CP
Pre-Intervention Physiotherapy Questionnaire
developed from the findings (themes) of both semi-structured interviews
Pre-Intervention Physiotherapy Questionnaire piloted
R
Pre-Intervention Physiotherapy Questionnaire issued
R
R
Pre-Intervention Physiotherapy Questionnaire returned and analysed
INTERVENTION /ACTION
SMPP designed
R
SMPP piloted - Sub-group
R
Start of Intervention: SMPP issued
R
3 month Follow-Up:
SMPP reviewed and evaluated using Feedback Chart
Finish: 6 month Follow Up:
SMPP reviewed; Post-Intervention Physiotherapy Questionnaire issued
Post-Intervention Physiotherapy Questionnaire returned
R
R
EVALUATION
Pre & Post Intervention Physiotherapy Questionnaires
Analysed and Feedback Chart evaluated
REFLECTION
69
R
Legend



Sub-groups were selected from total study population (n = 49)
+ Reasons for the study population reducing
CP = Clinical Psychologist
R = Researcher/Physiotherapist
Each stage is described in greater detail in Chapters 4 and 5 as the research process
progresses. Outlined below are the ethical considerations and the Population,
Sampling and Recruitment Strategy for the study.
3. 3. Ethics
Background
In the National Health Service (NHS) it is mandatory for research studies involving
patients to be reviewed by an ethics committee, whose principles are based on the
World Medical Association Helsinki Declaration (1964) (WMA, 2008). Although
there are many safeguards, such as research ethics committees, National Research
Ethics Services (NRES) and NHS clinical governance procedures (DoH, 2001a;
2006b; 2011; Dawson & Sausman, 2005), the protection of the participants’ interests
in matters of research often rely on the professionalism and personal integrity of the
researcher or the research team (Johnson & Long, 2006; Speziale & Carpenter, 2003).
Ethical issues surrounding volunteering for research (CSP, 2001; Consumers for
Ethics in Research (CERES), 1994; General Medical Council (GMC), 2002) were
carefully considered. Potential participants needed to be fully informed, to understand
what the study involved and what would be asked of them. A Patient Information
Leaflet outlining the study was prepared for them to read (Appendix F). It contained
information on the purpose and process of the study and was given to each potential
participant who was approached to be in the study, so that they were able to make an
informed decision as to whether they wished to participate or not. Contact numbers
for the researcher were also included in the information so they could speak to the
researcher at any time to request further clarification, or if any queries arose they
could be answered. The medical consultant responsible for the Adult Specialist CF
Clinic was given an information leaflet outlining the protocol of the study (Appendix
G).
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Submission to the Ethics Committee
The application for ethical approval was supported by the medical consultant
responsible for the Adult CF Specialist Services and a standardised proposal
(Appendix H) for the study was submitted to the local NHS research ethics
committee. Following minor revisions (the inclusion of a telephone extension so the
potential participant could contact the researcher/physiotherapist directly) approval
was granted (Appendix I). Professional Indemnity for the study is outlined in
Appendix J. The researcher ensured that procedures agreed by the ethical committee
were strictly adhered to and that sensitivity was shown towards the participants as
issues involving CF could be distressing, due to it being a life limiting disease. Ethical
issues such as consent, being fully informed, betrayal, anonymity and data protection
are discussed below.
Consent
The consent forms were developed from the standardised ones issued by the Local
Research Ethics Committee (Appendix K). The consent forms were personalised for
the study by using the title of the study and a contact telephone number for the
researcher, should participants wish to discuss the study at any point. Two different
consent forms to participate in the study were each signed by the researcher and the
by the participant. A photocopy of each of the two consent forms was given to the
participant to keep and the two originals were put in the participant’s medical notes.
For the participants who agreed to take part in a semi-structured interview an
additional consent form (Appendix L), adapted from that of the standardised Local
Research Ethics Committee form, was used. The participant and the researcher each
signed this consent form. The original was kept in the participant’s medical notes and
a photocopy was given to the participant.
Betrayal
Betrayal involves a breach of trust. Cohen et al. (2011) consider that the research
method most vulnerable to betrayal is that of action research, because of its
participatory nature. As a result, particular attention was given to ethical issues as
there was a blurring of roles between the researcher and the researched. Great care
was taken by the researcher to ensure that there was a distinction between when she
was functioning as a researcher and when she was in her role as a clinician, by
explaining carefully to the participant what was required for research purposes and
what was required for the purposes of their clinical treatment.
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Data Collection, Recording and Protection
All the data was collected by the researcher/physiotherapist except for the semistructured interviews which it was collected by the interviewer and it was analysed by
a statistician. The participants were informed in the Patient Information leaflet
(Appendix F) that the information collected in the questionnaires would be
anonymised by each participant being given an identification code known only to the
researcher, and all information would be treated as confidential. Data was safely
stored in a locked filing cabinet with only the researcher having access, and at the end
of the study all information was destroyed. The computer was restricted to use by the
researcher only and password protected. The study complied with the Data Protection
Act (Office of Public Sector Information (OPSI) (1998).
Qualitative studies challenge the anonymity of participants. The more information that
is given by the participants as their stories unfold, the easier it may be for them to
become identifiable to others (Speziale & Carpenter, 2003). Although anonymity
could be accommodated in questionnaires, as the participants had identification
numbers, it would not be possible for this to happen during the semi-structured
interviews, as only confidentiality, not anonymity, could be offered. Care was taken to
ensure that the information given would not result in the participant being identified in
publications and in the literature.
Insurance
As there were no physical interventions carried out as part of the study the risks
regarding insurance were considered to be low. Nevertheless the researcher made sure
that all research actions were covered by insurance and indemnity both for the
researcher, the participant and the hospital Trust, in order to comply with the
governance requirements of the National Research Ethics Service (DoH, 2001a).
3. 4. Population and Sampling
Background
As this was an exploratory study, and the outcomes unknown, the study site was
confined to one Adult Specialist CF Centre, it being considered too unwieldy and
unmanageable to attempt a multi-centre study involving other Adult Specialist CF
Centres. Whilst it is acknowledged that there are limitations to confining the study to
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one specialist clinic the decision taken was a pragmatic one. The study took place in
an Adult CF Specialist Clinic in a university teaching hospital in a provincial city on
the south coast of England, serving a local population of 245,000 people. The clinic
acted as a regional resource whereby district general hospitals in the adjacent areas
could link up to its specialist services.
The Adult Specialist CF Centre population comprised of two patient groups; the ‘full
care’ group (n = 61) who received all their care at the centre and the ‘shared care’
group (n = 90) who received their routine care at their local hospital and attended the
Adult Specialist CF Centre for specialist services and their annual review. The
decision was taken not to include the ‘shared care’ group as achievement of a
successful outcome in an action research study requires the researcher to have an indepth knowledge and understanding of the study population, in order to effectively
facilitate a change in behaviour. By including the ‘shared care’ patients the researcher
would not have a sufficiently detailed knowledge of them, as their day to day
treatment would be carried out at other hospitals, and they would only attended the
Adult Specialist CF Centre a few times a year. The ‘shared care’ group would have a
variety of physiotherapists seeing them at their local hospitals which would lead to a
lack of consistency in assessment and in the implementation and monitoring of the
SMPP.
Sampling Frame
An investigation of a specific population was selected since statistical
representativeness is not commonly sought in qualitative research, when the primary
aim is to understand the participants’ experience/behaviour in order to bring about a
change in it. In view of this a purposive sample was chosen.
Purposive Sample
A purposive sample is one that has been selected by the researcher as representative
of the group that is being studied (Holloway & Wheeler, 2010). This type of sample
includes a population with specific characteristics that have been identified in
advance. The purposive sample chosen in this study were all the patients in the “full
care” group (n = 61) registered in the Adult Specialist CF Centre, thereby ensuring a
full range of disease severity, with all the males and females represented. At the time
of the study there was only one physiotherapist working in this Adult Specialist CF
Centre and this physiotherapist was also the researcher for the study. The
characteristics of the purposive sample therefore comprised the total population of the
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“full care” group (n = 61), which included all the males and females, and they all saw
the same physiotherapist.
This purposive sampling frame of “full care” patients functioned as a non-probability
sample and as such was representative of the group. Acting as a complete sampling
frame it ensured maximum representation and was unbiased in its selection. The
disadvantage was that if there was a high number of non-participants the collected
data would be incomplete and unrepresentative of the whole population, and
potentially limit the validity of the results.
The following inclusion and exclusion criteria, within the available purposive sample,
were used in the study:Inclusion Criteria





All the patients registered as “full care” in an Adult CF Specialist Clinic based
in a university teaching hospital (aged 17 upwards)
Resident in the UK for the duration of the study
Understands English – as a non-funded study it was not possible to provide
translation services
Patients who had been seen at least once by the CF physiotherapist
Exclusion Criteria






Post heart-lung transplant - because after transplantation there is no need to do
routine chest physiotherapy as the lungs are normal
Learning difficulties that might preclude participants from completing the selfcompleted questionnaires
Not resident in the UK for the duration of the study. One patient was
registered as “full care” in the clinic but was not resident in the UK. They did
not attend the clinic frequently enough for their progress during the study to be
accurately monitored
3. 5. Recruitment Strategy
Background
There were a total of 61 “full care” patients registered in the Adult CF Specialist
Centre available to be recruited to the study. When the selection criteria were applied
the eligible number was reduced to 55. In order to ensure maximum recruitment it was
74
intended that all the eligible participants would be approached during face-to-face
contact over a four month period during an in-patient stay or an out-patient visit.
Throughout the study participants were only approached when they were in a
medically stable state. If at the end of the four month recruitment period some
potential participants had not been approached they would be contacted by
telephone. The recruitment strategy is outlined in Fig. 3. 3, p. 76. .
A four month recruitment time frame was chosen as it was a slightly extended time
beyond the interval of three monthly routine follow ups recommended in the
Standards of Clinical Care (ACPCF/CF Trust, 2002) at the time of the study. It was
not advisable to extend the recruitment time frame for too long a period as it was
likely that, for some of the participants with severe disease, a significant deterioration
could occur and result in non-participation or withdrawal from the study. As far as
possible, routine visits were used as opportunities to recruit and collect data, to
minimise disruption and unnecessary travelling for participants.
75
RECRUITMENT STRATEGY
Mixed Methodology
n = 61 - Full care patients
in the Specialist CF Clinic
Criteria for Eligibility
Applied – 6 excluded
• 2 - learning difficulties that
rendered taking part too
difficult for the participant.
• 1 - post heart lung transplant
• 2 - unable to understand and
speak English
• 1 – not resident in the UK for
the duration of the study
Approached
Face to Face
46 patients
(n = 55)
Recruitment
timeframe
eligible patients
4 months
Approached by
telephone
9 patients
6 patients declined
No reason given for
withdrawal
Total
recruited to
the study
(n = 49)
Fig. 3. 3. Recruitment Strategy
Face to Face
Of the 55 eligible patients 46 were approached face to face by the researcher during
an in-patient stay or during an out-patient visit and given a full explanation of what
participating in the study involved. A Patient Information Leaflet was given
(Appendix F) for them to read. Since there were a number of phases, including
76
multiple data collection, it was explained to them that they were being asked to take
part in a study which involved them in using and testing a new self-management
physiotherapy programme (SMPP) the purpose of which was to improve their
adherence to physiotherapy. This would involve them in being asked to complete two
questionnaires issued at the beginning and end of the study period to evaluate the
effectiveness of the SMPP. In addition they may also be asked to participate in a
semi-structured interview or in pilot studies for the self-completed questionnaire or
the SMPP. Participating in the study would involve them being contacted several
times over the study period. It was anticipated that participation in the research would
not involve additional visits to the hospital. They were also informed that they could
withdraw from the study at any point and not have to give a reason why. They were
reassured that if they chose to withdraw their treatment would not be affected in any
way. The researcher’s contact telephone numbers were given in case they needed to
discuss taking part, or to obtain further details. It was stressed that the study was
seeking their views, their comments would be valued and they would not be judged by
their replies. There were no right or wrong answers and that their input was essential
to ensure that any potential improvements to the delivery of physiotherapy treatment
would be developed from their perspective. It was emphasised that the information
they gave would be confidential and that the responses would have names removed,
with each participant given a code number known only to the researcher. They were
encouraged to take time to consider whether they wanted to participate or not and
given an opportunity to ask questions. If they were prepared to continue, the patient
was asked to sign two consent forms (Appendix K) which were witnessed by the
researcher. A copy of each of the consent forms was given to the participant and the
two originals were put in their medical notes. In the face to face recruitment phase, 46
patients were approached.
Telephone
When the four month face to face recruitment period passed there were nine eligible
patients still remaining to be seen. When contacted by telephone, patients who
showed an interest in the study were given preliminary information about it and sent
the Patient Information Leaflet (Appendix F) and the Consent Forms (Appendix K). A
stamped addressed envelope was enclosed for the return of the consent forms. Each
patient was encouraged to contact the researcher for further information if they
wished and a contact telephone number was given to them in the Patient Information
Leaflet (Appendix F). For patients who had not responded after three weeks, a one off
follow up telephone call was made. If the patient expressed an interest but after a
further three week period the consent forms had not been returned, a letter was sent as
77
a one off reminder. If the consent forms had still not been returned no further action
was taken since it was unethical to be coercive in recruiting participants. Of the 55
eligible patients 46 were approached face to face, nine were approached by telephone
and in total 49 patients agreed to participate in the study.
Study Population
The total study population comprised 49 participants from which sub-groups were
selected to take part in semi-structured interviews and pilot studies for the
development of the self-completed questionnaire and the SMPP. The semi-structured
interviews are outlined in Chapter 4 and the pilot studies are outlined in detail in
Chapters 5 and 6.
3. 6. Outcome Measures
In order to evaluate the effectiveness, or other wise, of the SMPP to improve
adherence to physiotherapy it was important to select outcomes measures that were
sensitive enough to accurately measure changes that had occurred as a result of the
implementation of the SMPP. Initially QoL was chosen but it was subsequently not
used for reasons outlined below. The lung function test of the forced expiratory
volume in one second (FEV1) and Body Mass Index (BMI) were used in addition to
the participants self-reporting their level of adherence at the beginning and end of the
study period by means of a self-completed questionnaire.
(a) QoL
The ethical submission for the study included the use of a CF health related QoL
outcome measure that had been developed and validated by Gee, Abbott, Conway,
Etherington and Webb (2000). It was initially postulated that if the SMPP improved
adherence and thereby potentially brought about improved health outcomes the
participant’s QoL would benefit. However prior to the start of the study the use of this
QoL measure was re-evaluated and it was decided that the factors outlined below
would compromise the validity and reliability of any QoL findings as the
effectiveness or otherwise of the SMPP had yet to be determined. Without knowing
whether the SMPP improved or impeded the ability to adhere to physiotherapy
treatment it would not be possible to evaluate any related changes the participants
QoL for the following reasons:
78
QoL is used to evaluate well being and is a complex issue. QoL is a measure of how
a person perceives their own well being to be and is not the absence of ill health. It
needs to be distinguished from health status which is an objective measurement of the
state of a persons’ health (World Health Organisation Quality of Life (HOQOL),
1995). In CF health status is frequently measured in physiological terms of lung
function, using the FEV1, and the Body Mass Index (BMI) as an indicator of
nutritional status. It has been identified in CF QoL studies (Abbott, Dodd, & Webb,
1995; Gee et al., 2000) that how a person with CF evaluates their own QoL is based
significantly more on how they perceive their health to be rather than their actual
health status. There are also gender differences in how QoL is perceived for people
with CF, with women who have a similar health status to men reporting a poorer QoL
(Gee et al., 2000; Patterson et al., 2008) for reasons that remain unclear.

Duration of the study
The study intervention period of six months was over the winter period which is when
there is usually an increased prevalence of chest infections accompanied by a
corresponding increase in chest physiotherapy treatment. Chest physiotherapy has
been identified as burdensome in several studies (Daniels, 2010; White et al., 2007;
Ireland, 2003) therefore it would be unlikely that during the winter months when
there is often a need to increase chest physiotherapy, that the participants would
perceive that their QoL had improved as the burden of increased treatment would
probably compromise their QoL in the short term. In the longer term (i.e. a year or
more) adherence to physiotherapy treatment would be expected to reduce the impact
of deteriorating lung function brought about by repeated chest infections and thereby
be more likely to bring about a measurable improvement in QoL but this could not be
established during the short duration of this study.

Sample Size
At the time of the study the number of potential participants was low (n = 61). This
number would be further reduced due to those who would decline to take part, the
inclusion/exclusion criteria, drop out rate, life changes, serious illness and death.
Because QoL is perceived differently by men and women, if the study population was
divided by gender the number of participants in each group would be very small and
consequently compromise the validity and reliability of any QoL outcome measures
as they may not then be applicable to the general CF population.
In view of the above factors it was decided not to use a QoL outcome measure until
the effectiveness or otherwise of the SMPP had been established. If the SMPP proved
79
to be effective in improving the ability to adhere to physiotherapy treatment then
future long term studies of greater than a year would warrant the inclusion of a valid
QoL measure, the purpose of which would be to assess the impact of increased
adherence to physiotherapy bringing about improved health outcomes.
(b) FEV1
FEV1 was used as an outcome measure to monitor the participants level of disease
severity before and after the trial period as part of the process of evaluating the
effectiveness or otherwise of the SMPP. FEV1 is a lung function test that is a valid,
reliable and objective method of measuring the respiratory state of the lungs. It is a
simple standardised objective pulmonary function test that is a well established
marker of disease severity and life expectancy (ATS, 1989; Aurora et al., 2000;
Sharma, et al., 2001; Belkin, Henig, Singer, Chaparro, Rubenstein et al., 2006). It is
measured as a percentage of predicted normal values and provides information about
the nature of airway obstruction. FEV1 has been defined as the maximal volume of air
exhaled in the first second of a forced expiration from a position of full inspiration,
expressed in litres at BTPS (Body temperature (i.e. 37°C)) (Miller et al., 2005).
Percentages are calculated based on predicted normal values for FEV1, age, sex,
height, weight and ethnicity with levels of severity graded appropriately for each
specific respiratory disease. Values of between 80% and 120% of the average value
are considered normal.
It was important to determine the study participant’s FEV1 for two reasons:
 To establish the level of disease severity of the study population in relation to
the National CF Database (CF Trust, 2000) population at the time of the study in
order to determine whether the results were generalisable or not
 To determine whether the FEV1 deteriorated significantly during the six
months study period. However, studies have shown that people with CF (Abbott et al.,
1996; Kettler et al., 2002) increase their adherence to treatment if they are anxious
about their deteriorating health, so in this study a finding of increased adherence to
physiotherapy could be attributed to anxiety about deteriorating health rather than
effectiveness of the SMPP to improve adherence. Therefore the study would need to
demonstrate that adherence had increased and the FEV1 had not fallen significantly in
which case the increase in adherence could be attributed to the effectiveness of the
SMPP. Without measuring the FEV1 it would impossible to evaluate the effectiveness
or other wise of the SMPP.
80
(c) Body Mass Index
Body Mass Index (BMI) is used to indicate how well nourished a person is (Walters
& Mehta, 2007). Mal-nourishment and accompanying weight loss occurs in CF as a
result of pancreatic insufficiency, mal-absorption and the inability to digest fat. As
body weight for the normal population has a significantly large range, the BMI is
commonly used as an alternative indicator of how well nourished a person is. The
BMI is calculated by dividing the weight in kilograms by the square of the height in
metres (KG/M2); the normal range is 20-25 kilograms/M2. Indices below 20 are
considered to be under weight, indices between 25 and 30 are classified as
overweight, while values exceeding 30 are classified as obese. Having a BMI of less
than 20 is indicative of mal-nourishment which results in depression of the immune
system, and in CF an increased risk of infection and fatigue of the respiratory muscles
(Pryor & Prasad, 2008). Fatigue is a significant problem for people with CF as it can
reduce the ability to effectively carry out chest physiotherapy and exercise
programmes.
It was important to determine the study participants’ BMI in order to establish their
nutritional level in relation to that of the National CF Database (CF Trust, 2000) at the
time of the study. The purpose of the National CF Database (CF Trust, 2000) was to
register of all the adults and children in the UK with CF in order to establish their
health and social characteristics so that standards for treatment could be developed,
health care costs identified and trends for future care needs predicted. If the study
population’s BMI was significantly higher than that of the National CF Database (CF
Trust, 2000) then the study population would be likely to be fitter, healthier, tire less
quickly and as a result be able to do their chest physiotherapy and exercises more
effectively and potentially have fewer chest infections. The converse would also be
true, that if the study population’s BMI was significantly worse it would result in a
greater need for chest physiotherapy due to a poor immune system that would result
on an increase in chest infections. This increased burden of treatment could
compromise the ability to adhere to treatment. If there was no significant difference
then the health of the study population would be comparable to that of the National
CF Database (CF Trust, 2000) making the results generalisable.
Summary for Methodology
The purpose of the study was to discover why people with CF have difficulty
adhering to physiotherapy and to use that information to develop an intervention in
the form of a SMPP to potentially optimise the ability to adhere to treatment. The
81
action research approach selected, the “Professionalising” typology chosen and the
outcomes measures set. The study population was defined and the recruitment
strategy implemented. How the action research process was initially applied to the
study is described in Chapter 4.
82
CHAPTER FOUR – THE ACTION REASERCH CYCLE APPLIED TO THE
STUDY
4. 0. Introduction
The aim of this chapter was to meet the first three study objectives:
1.
2.
3.
To investigate the problems that people with CF have with adherence to
physiotherapy prior to the study
To investigate the level of adherence to physiotherapy treatment prior to the
study
To develop and test the effectiveness of the SMPP
The study set out to apply an action research approach to identify the problems adults
have with adhering to physiotherapy from their perspective. The action research
model has four parts comprising plan, action/intervention, evaluation and reflection
which are incorporated into one cycle (Ch. 3 p. 60). Each stage of the action research
cycle influenced the development of the next stage although in this process led and
professionally determined action research “Professionalising” typology the process,
but not the content, was pre-determined. Although many stages overlapped for
reasons of clarity the process undertaken at each stage is fully described sequentially.
How the action research model was initially applied to the study is outlined below.
Following the analysis and findings of the semi-structured interviews in Part I – Plan
(Stage I – Identification of the Problem), it became apparent that action research,
which requires the participants to be fully involved in the development, design, and
evaluation of the research process, was not warranted and therefore the study no
longer complied with the action research approach. How the research process was
subsequently re-designed is outlined in p. 115.
4. 1. Initial Structure of the Study
How the four parts of the action research cycle were initially planned are outlined
below:
83
THE ACTION RESEARCH PROCESS – FIRST CYCLE
1. Plan
The Planning phase has 3 stages:
Stage 1. Identification of the Problem
Selection of methodological approaches and the
development of the methodological tools

Phase I – First Set of Semi- Structured Interviews
 Phase II – Second Set of Semi- Structured Interviews
 Phase III- The Survey
Stage 2. Development of the Innovation

Phase I – Developing the SMPP
 Phase III – Piloting the SMPP
4. Reflection






Discussion
Conclusion
Recommendations for
Clinical Practice
Recommendations for
Future Research
Limitations
Reflections
Stage 3. Preparation for Change
2. Action
Implementation of the
intervention (SMPP)
3. Evaluation



Stage I
Evaluation Tools
Feedback Chart
Post - Intervention Physiotherapy Questionnaire
Stage 2. Analysis of the Pre and Post
Intervention Physiotherapy Questionnaires
Stage 3 Evaluation, Results and Discussion
Fig. 4. 1. The action research cycle
Part 1 - The Plan
Part 1 – Plan (What to Do) had three stages. Within each stage there were several
phases as outlined above:
4. 2. Stage 1 - Identification of the Problem
4. 2. 0. Introduction
Stage 1 was concerned with identifying the problem by means of
84
(a) selecting the methodological approaches
(b) development of methodological tools
The research process was influenced by the need to comply with infection control
guidelines issued by the CF Trust (2011a, 2008, 2004a, 2004b). In a health care
setting infection control is a major issue for people with CF as they are not
encouraged to mix socially with each other due to the risk of cross infection through
exposure and resultant colonisation of the pathogens Pseudomonas and MRSA
(Methicillin Resistant Staphylococcus Aureus). Both of these pathogens result in a
marked deterioration in lung function and general health. The CF Trust (2011a;
2008a, 2004a, 2004b) advocates a policy of segregation for people with CF identified
as having MRSA or Pseudomonas during in-patient admissions and out-patient
clinics.
Although consideration was given to such research tools as focus groups, which
encourage interactive discussion across a broad range of topics, it was dismissed
because of the risk of cross infection between participants and also because some
participants could find it an inhibiting environment and prevent them from disclosing
rich detail. Observation would be impractical and case studies unsuitable due to the
diversity in health and social characteristics in the study population. In view of these
factors careful consideration was given to the selection of data collection methods
which are outlined in section 4. 2. 2. (b) Development of Methodological Tools, p. 86.
4. 2. 1. (a) Selecting the Methodological Approaches
The information obtained during the extensive literature search (Chapter 2) helped in
both the selection and development of the methodological approach. This action
research study set out to apply the “Professionalising” typology (Hart & Bond, 1996)
using a mixed methodology, involving the collection of qualitative and quantitative
data in order to understand the complex problems of adhering to physiotherapy from
the participants perspective.

Qualitative Data
Qualitative research seeks to describe, understand and explain a particular
phenomenon in order to make visible the experiences and perceptions of the research
participants (Parahoo, 2006; Topping, 2006). Qualitative research provides
explanations of why something happens in a particular way and seeks typologies or
classifications of grouping people (or situations) that tend to have common
85
characteristics, opinions and experiences (Marshall & Rossman, 2006). Qualitative
data was needed to identify what problems the study participants encountered whilst
doing their physiotherapy, their coping skills, health beliefs, their perceptions of
having CF, and the impact CF and physiotherapy treatment had on their lives. This
qualitative data informed the development of questions for the survey and the design
of the SMPP. The collection of qualitative data was a proceeding step to ensure the
relevance of the survey and the SMPP. In view of these considerations the qualitative
data collection method chosen was the semi-structured interview and is described in
section 4. 2. 2. (b) below - Development of Methodological Tools – Qualitative
Approach below.

Quantitative Data
In the social sciences, quantitative research refers to the systematic empirical
investigation of phenomena and their relationships. The objective of quantitative
research is to develop and employ mathematical models, theories and/or hypotheses
pertaining to phenomena (Parahoo, 2006; Topping, 2006). The process of
measurement is central to quantitative research because it provides the fundamental
connection between empirical observation and mathematical expression of
quantitative relationships. The quantitative data method chosen for the study was a
survey and is described in section 4. 2. 2. (b) Development of Methodological Tools –
Quantitative Approach below. .
4. 2. 2. (b) Development of Methodological Tools
The methodological tools of the semi-structured interview and the survey were
selected following careful consideration of the need to meet the research objectives
and to comply with the CF Trust’s infection control guidelines (CF Trust 2004a;
2004b).

Qualitative Approach: Method – The Semi-Structured Interview
The semi-structured interview gives a one-to-one relationship between the participant
and the interviewer enabling rich detail to be collected (Silverman, 2005). The semistructured interview is conducted by grouping topics and questions that the
interviewer can ask in different ways for different participants in a topic guide
(Denzin & Lincoln, 2005; Topping, 2006). This freedom can help an interviewer
tailor their questions to the interview situation and to the people they are interviewing,
with the aim of providing in-depth qualitative information from the participant’s
perspective about a ‘real world’ situation. A semi-structured interview, informed by a
86
topic guide, enables an experienced interviewer to probe the answers in detail but the
order and content of the prompts can vary depending on the individual’s response
(Tod, 2006).
The disadvantages of the interview method is that it is time-consuming, expensive if it
is necessary to have help transcribing the interviews (McKenna, Hasson, & Keeney,
2006), and it can be prone to reflexivity on the part of the interviewer. Reflexivity
occurs when there is a lack of objectivity in how a situation is being evaluated. The
risks can be minimised by using critical thinking to reflect on the information being
analysed and by asking a colleague to be involved in the analysis and evaluation to
bring rigour and objectivity to the process.

Quantitative Approach: Method - The Survey
The purpose of a survey is to obtain information on a current situation or phenomena
in order to describe what exists with respect to variables or conditions (McKenna et
al., 2006; Silverman, 2005). In this study a survey in the form of a self-administered
questionnaire was developed, as at the time of the study there was no validated
questionnaire for collecting information from adults with CF that would meet the
study objectives. The purpose of the survey was to collect data from a purposive
sample of all the eligible participants in the study group which ensured that no subgroup was excluded and that the information collected was as representative as
possible. The survey was issued in two stages, before and after the implementation of
the SMPP, to monitor any changes which may have occurred. The questionnaire,
developed and administered before the implementation of the SMPP was called the
‘Pre-Intervention Physiotherapy Questionnaire’. It was issued again at the end the
study period as the Post-Intervention Physiotherapy Questionnaire when two
additional questions were added to evaluate the effectiveness of the SMPP to improve
their ability to adhere to physiotherapy.
4. 2. 3. Summary of Selecting Methodological Approach
By combining qualitative and quantitative methodological approaches and selecting
valid and reliable methodological data collection tools (the semi-structured interviews
and the survey) information giving an in-depth understanding of the complex issues
surrounding adherence to physiotherapy could be better understood. How this
information was collected is outlined in Phase I and II.
87
4. 3. Stage 1 Phase I – The First Set of Semi-Structured Interviews
4. 3. 1. The Development of the Semi-Structured Interview
The First Set of Semi-Structured Interviews were conducted so that the participants
could describe, in their own words, the problems they were having with adhering to
physiotherapy and their perceptions of having CF. The information from these semistructured interviews was analysed and used to inform the development of the survey
and the design of the SMPP.
The purpose of conducting the semi-structured interviews was to meet the following
research aims:
1.
To investigate the problems that people with CF have with adherence to
physiotherapy prior to the study
2.
To investigate the level of adherence to physiotherapy treatment prior to
the study
To contribute to the development of the intervention – the SMPP
3.
The same prompts were used for all the interview participants enabling comparisons
to be made from the responses. This would not be possible in an unstructured
interview, as the interviewee determines the course of the interview which could
result in some important aspects not being addressed, the collection of large amounts
of irrelevant information and the analysis being made more difficult.
4. 3. 2. Process
The First Set of Semi-Structured Interviews were carried out by a clinical
psychologist who had experience of working with adults with CF but had not worked
in the Adult Specialist CF Centre. The clinical psychologist was chosen because of
their pervious experience of working with adults who had CF and there was an
expectation that the participants could speak more freely to someone who was
unknown to them. It was deemed inappropriate for the researcher/ physiotherapist to
conduct the semi-structured interviews as it was considered that this would assert
undue influence on the information being exchanged, because at the time of the study,
the researcher was the only physiotherapist responsible for this group of patients and
was well known to them.
The disadvantage however was that the clinical psychologist might not have an in
depth knowledge of physiotherapy and therefore may not be able to set the
88
information given into context or explore the issues raised in sufficient depth. This
problem was minimised by the researcher/physiotherapist discussing in detail with the
clinical psychologist the physiotherapy treatment modalities for CF in order to ensure
they had sufficient knowledge to enable exploration of these issues during the
interview process. The interviews took place in one of the CF Centre offices which
was a private area and a familiar setting for the participants. The interviewer used a
topic guide to provide a framework and relied on the interviewee to direct the
conversation.
The Semi-Structured Interview Topic Guide
The interview topic guide was developed following a review of the literature and
discussions between the researcher/physiotherapist and the clinical psychologist. The
topic guide was developed around the areas of discovering what problems the
participant had with adhering to physiotherapy, what having CF meant to them and
what health beliefs they had. Prompts were used to ensure that the topics raised were
fully explored. Open-ended questions, based on topic areas, were pre-prepared but not
prescriptive. This approach can give a richness and depth in the replies around the
topic areas (Tod, 2006) whilst providing opportunities for both the interviewer and
interviewee to clarify questions and responses. At the end, an open question was
added to ensure that the participants had the opportunity to raise any issues they
considered had not been addressed. The following topics were covered (Fig 4.2).







Topic Guide
Experience of having CF
The impact that physiotherapy had on their lives
Establish what physiotherapy they were doing/not doing
Establish their views on the effectiveness of their physiotherapy programme
Establish what they considered the impact of not doing physiotherapy to be
Establish what exercise/activity they were doing
Enquire whether they had any further views about having CF and
physiotherapy that may not have been discussed in the interview
Fig. 4 . 2. Topic guide for the semi-structured interviews
Based on recommendations (Rubin & Rubin, 1995) of the importance of bringing the
participants back to a positive frame of mind and leaving them feeling calm, the
interviewer ended with summing up the main points of the interview and emphasised
the valuable contribution of the interviewee towards meeting the study objectives.
89
Recruitment to the Semi-Structured Interview
Of the total clinic population of 61 ‘full care’ patients, 55 were deemed eligible, and
of these 49 entered the study by consenting to participate in it. A purposive sample
was chosen from this study population (n = 49). Three 3/49 (6.2%) participants were
selected with each one representative of one of the three classifications of adherence
to physiotherapy previously defined in Chapter 1, p. 17:


Adherent – that which has been agreed between the researcher/physiotherapist
and the participant and the participant reports that they are implementing it.
Partial Adherent – that which has been agreed between the participant and the

physiotherapist but the participant reports that they are only partially
implementing it.
Non-Adherent – that which has been agreed between the physiotherapist and
the participant but the participant reports that they are not implementing it, and
participants who report that they do not do any physiotherapy.
The participants classification of adherence was determined by the participant selfreporting it and the clinical judgement of the researcher/physiotherapist. Although one
participant from each level was a small number, the interviews at this stage were a
preliminary information gathering exercise.
While they were in a stable state, either during an in-patient stay or an out-patient
visit, the first participant to be approached in each of the three categories of adherence
the researcher/physiotherapist agreed to be interviewed. The interviewees were
identified as Interviewee 1 (adherent), 2 (partially-adherent) and 3 (non-adherent). An
explanation was given as to the purpose of the interview, and how it would be
conducted by using a topic guide covering areas that related to their values, feelings
and behaviour regarding having CF, and any issues they may have in adhering to
physiotherapy. Although the approach was made by the researcher/physiotherapist,
thus potentially making it difficult for the participant to decline, every effort was
made neither to influence nor coerce any of the participants to take part. Steps were
taken to carefully explain the purpose of the interviews and answer any questions that
potential interviewees had. They were also informed that they could refuse without
having to give a reason, and it would not affect their treatment now or in the future.
Written consent was obtained from each interviewee (Appendix L) and placed in the
participant’s physiotherapy notes. It was considered that these three representative
case studies would give a sufficient information about the problems of adhering to
90
physiotherapy, and the findings would provide valid and reliable information to
inform the development of the survey and the design of the SMPP.
4. 3. 3. Three case studies selected for the first set of semi-structured interviews
The following three case studies were indicative of the three categories of adherence:
Interviewee 1 – Adherent




24 year old single female – full time student –living away from home
Moderately severe CF disease – first admission to hospital at 14 years
Rebelled as a teenager and avoided treatment – she felt that
fewer hospital admissions would equate with her being well –
he less attended the CF unit the better she thought she was
 Daily treatment - inhaled antibiotics and bronchodilators –
40 minutes twice a day plus vitamins and enzymes
 Has changed in her approach to CF over the years and now
sees the CF Unit as being supportive
 This positive approach has resulted in improved and maintained
good health
 CF does not interfere that much in her life – she adapts
her life to accommodate its consequences
 She ‘normalises’ her life by comparing it to people who
do not have CF – and is aiming to work from home
 She exercises twice a week and considers this “normal”
activity to be part of her treatment
 She feels in control of her disease and that what she does
has an impact on it
 Because she fells she can control her disease she is adherent to it
Fig. 4. 3. Interviewee 1 – Adherent
91
Interviewee 2 – Partially Adherent




24 year old single male who works full time in an office
He considers that he copes well and just ‘gets on with life’
He has moderate/mild CF with liver and spleen complications
Daily treatment ( antibiotics and bronchodilators – 40 minutes)
and vitamins and enzymes
 He only does chest physiotherapy when he is unwell – being fit
and active he considers is adequate
 He has an “educated” approach to doing chest physiotherapy.
He considers that chest physiotherapy is beneficial when he is ill
but there is no discernable clinical improvement in his chest when
he is well, so he does not do any .
 Having CF does not stop him leading his life within normal parameters
Fig. 4 .4. Interviewee 2 – Partially Adherent
Interviewee 3 – Non-Adherent
 24 year old single male – part time student – in a pop group
 Mild CF but moderate/severe asthma – weight and height below
average
 Poor attendance at clinic- he feels well therefore does not see the
need to attend
 Goes to the gym 3 or 4 times a week which he thinks is adequate
 Lives in a lively household with 4 other single men – busy social
life goes clubbing at week-ends
 Daily treatment – nebulised bronchodilators and antibiotics –
40 minutes x 2 daily
 Does not do physiotherapy – knows what he ought to do. When an in-patient
he is very adherent but does not continue with treatment on discharge
 Has a “happy go lucky” attitude that compromises his well being
● He considers that if he does not attend the CF Unit he must be well
Fig. 4. 5. Interviewee 3 – Non Adherent
Interview Process
Each interview was audio recorded and lasted approximately one hour. The three
interviews were conducted over a period of three months by the clinical psychologist.
The interviews took place on a day when the interviewee was attending clinic or was
an in-patient or on a date and time that was convenient to them. After the interview
each recording was fully transcribed by a medical secretary with experience in
transcribing.
92
4 . 3. 4. Analysis of the First Set of Semi-Structured Interviews
There are a number of different ways of analysing qualitative data and after careful
consideration thematic analysis approach was chosen. The analysis of qualitative
research, which involves complex social phenomenon, necessitates a pragmatic,
subjective and interpretive approach that allows for reflection on the findings as they
emerge (Braun & Clarke, 2006). As the purpose of this exploratory study was
descriptive, a theory building inductive approach was considered to be the most
suitable, rather than a theory testing approach as evident in the deductive approach.
When analysing qualitative research the researcher needs to have an awareness of
reflexivity, as their own perspective on a situation can influence their interpretations
of the phenomenon they are studying (Holloway & Wheeler, 2010). Although the
researcher had extensive experience of CF, she was aware of the impact that this
could potentially have when analysing the data and therefore had to be rigorous in
maintaining an open perspective by using critical thinking as a form of reflection.
Critical thinking (Castle, 2009; Paul & Elder, 2006) is the art of analysing and
evaluating thinking, with a view to improving it. It is a self-directed, self-discipline
which exercises clarity, accuracy and precision in thinking with the aim of eliminating
bias and distorted thinking processes.
Thematic Analysis
Thematic analysis is a systematic approach to data analysis through a series of
transparent steps that provides an audit trail (Holloway & Wheeler, 2010). Thematic
analysis was chosen as it is a flexible approach that enables the researcher to make
active choices about the particular form of analysis they are engaged in (Braun &
Clarke, 2006). Thematic analysis is ideally suited to qualitative research and in
particular exploratory studies, such as this one, where the participant’s views were
unknown. Boyatizis (1998) characterises thematic analysis as a tool to use across
different methods in order to identify, analyse and report patterns (themes) within
data. It is the identification of themes within the interview data that informed the
development of the survey and the design of the SMPP.
The underlying epistemology was based on an essentialist (realist) perspective where
motivations, experience and meanings were interpreted in a straight forward way as it
was assumed that there was a unidirectional relationship of meaning, experience and
language. Braun and Clarke (2006) state that themes or patterns can be identified
within the data through an inductive approach, which means that themes are strongly
93
linked to the data. This inductive data driven approach meant that the coding of the
data did not fit into a pre-existing coding frame.
A theme (Braun & Clarke, 2006) captures something important about the data in
relation to the research question and represents some level of patterned response or
meaning within the data set. Themes were identified at a semantic (explicit/surface)
level and no attempt was made to look for anything beyond what the participant said.
The study was exploratory in nature and the area under researched, therefore it was
considered that a “surface” level approach was appropriate at this stage.
The data was analysed according to the six phases of thematic analysis (Braun &
Clarke, 2006):
Table 4. 1. The six phases of thematic analysis (Braun & Clarke 2006, p. 78)
Phases
Description
1. Familiarisation with the Transcribing reading and re-reading the data
Data
2. Generating initial Codes Coding interesting features of the data in a systematic
fashion across the entire data set, collating data relevant to
each initial code
3. Searching for Themes
Collating initial codes into potential themes, gathering all
data relevant to each potential theme
4. Reviewing the Themes Checking if the themes work in relation to the coded
extracts (Level 1) and the entire data-set (level 2),
generating a ‘thematic map’ of the analysis
5. Defining & naming
Ongoing analysis to refine the specifics of each theme and
themes
the overall story the analysis tells, generating clear
definitions and names for each theme
6. Writing the Report
Final opportunity for analysis. Selection of vivid,
compelling extract examples, final analysis of selected
extracts, relating back the analysis to the research question
and literature, producing a scholarly report of the analysis.
The Application of Thematic Analysis to the First Set of Semi-Structured Interviews
Once the three semi-structured interviews had been conducted they were transcribed
verbatim by a medical secretary and audited by the researcher/physiotherapist. Each
transcript was carefully listened to, re-read, checked for accuracy and a preliminary
thematic identification of both the taped and transcribed text was made (Miles &
Huberman, 1994) using the thematic analysis approach outlined below.
94
Phase 1. Familiarisation
The researcher listened to the tape recordings and “actively” read and re-read the
transcriptions so that she was fully immersed in the data, in order that the participants
“life world” (Burnard, 1991, p. 161) could be appreciated and understood. The
recalling of their experiences gave rich detail which contributed to the knowledge and
understanding of the problems they experienced adhering to physiotherapy treatment.
Phase 2. Generating Initial Codes
When the transcripts were read through again core ideas and concepts began to
emerge comprising of key words and phrases or frequently repeated terms and nouns
(Rubin & Rubin, 1995). These words or phrases constituted “units of meaning” which
were grouped together and generated initial codes as outlined below for each of the
interviews (Fig. 4. 6). Each of the initial codes was used to describe a selection of the
“units of meaning” assigned to them. The code numbers were a consecutive series of
numbers selected as a convenient means of identifying initial codes. Examples of
initial codes and their assigned number are illustrated below.
Number
Initial Codes
1.
Positive view of their ability to influence their health outcomes
2.
Negative views on their ability to influence their health outcomes
3.
Adherence to physiotherapy
4.
Being in control
5.
Optimistic
6.
Effectiveness of physiotherapy
7.
Problems of having CF
8.
Having a life threatening disease
9.
“Normalising” having CF
10.
Denial of clinical state
Fig. 4. 6. Initial codes generated from the data set
How the “units of meaning” from each interview were initially coded is outlined
below:
95
Interviewee – 1
Raw Data Extracted (Units of Meaning)
Positive Approach
Interventions and treatment – enabling
Treatment is a good outcome
Physiotherapy controls my disease
Early interventions minimise impact of CF
CF does not interfere with my life but is a big part of it
I have to take CF into consideration
I’m worried about not doing physiotherapy
CF is not controlling me
Physiotherapy has to be done. It does not often slip
CF is part of my normal life
Initial
Code
1
3
4; 5
4; 6
5; 7
7; 8
7; 8; 9
3
4; 5; 8
3
7; 8; 9
Interviewee 2
Raw Data Extracted (Units of Meaning)
I am fit and active
Routine Physiotherapy has no benefit
When unwell I do physiotherapy
I have mild disease therefore no need to do physiotherapy routinely
Not disadvantaged by having CF
I’m not too bad. I have mild CF; I’m lucky
CF does not affect my life at all
Got to look after myself
I feel in control of my health
Initial
Codes
1
6;3
3; 6.
6; 7; 10
7; 9; 10
7; 9; 10
7; 8; 10
1; 8; 10
1; 4
Interviewee – 3
Raw Data Extracted (Units of Meaning)
Initial
Codes
4; 5
1; 7; 10
I’m not in control of my life
If I need treatment I must be unwell therefore if I do not have any
treatment I must be well. It is a stupid way of looking at it but that’s it
I go to the gym – it is as good as chest Physio
6
I am happy to have Physio when in hospital but I give up when I go 3; 6
home
I’m not too bad therefore there is no need for me to do it
6; 7; 10
CF gets me down but I do not dwell on it
7; 8
I know that physio is important but I cannot be bothered to do it
6; 2
Physio interferes with my life
7; 6
There is no one out there to remind me to do it
Fig. 4. 7. Coding
96
7; 8
Phase 3. Searching for Themes
The purpose of this stage was to identify potential themes that appeared from the
initial coding of the data set, and to re-focus the analysis at the broader level of
themes rather than at the initial coding. The aim was to combine, collapse and remove
duplication. Initial codes were grouped into potential candidate themes which were
set out in a table format. At this stage a relationship was being sought between the
initial codes and the candidate themes, resulting in candidate themes being collapsed
and merged into overarching themes. This process resulted in four overarching themes
being identified (Table 4. 2., p.98).
Phase 4. Reviewing the Themes
The themes were reviewed and refined at two levels. Level one involved reviewing at
the level of the data extracts that had been grouped into initial codes to check whether
they had formed a coherent pattern that represented the analysed data. On being
reviewed it appeared that the data extracts grouped into initial codes were correctly
reflected in the candidate themes. The second stage involved the re-reading of the
three transcripts in order the check that candidate themes and the four overarching
themes accurately reflect the meanings evident in the data set as a whole, which they
appeared to. A coherent pattern emerged of the overarching themes focusing on:




Health Beliefs
Physiotherapy
Perceptions of having CF
Denial
These four overarching themes worked in relation to the data set and were collapsed
into two final themes i.e. the overarching theme of “Denial” was submerged into the
final theme of “Health Beliefs” while the theme of the ”Physiotherapy” was collapsed
into the final theme of “Perceptions of Having CF”, because how a person perceives
having CF can influence their ability to adhere to physiotherapy. These two final
themes are further defined in Phase 5 which is outlined in Table 4. 4., p. 98.
97
Table 4. 2. The Themes
Quotes



“you have to give it a go”
”I’m in control”
“I put on a positive side and do anything
you want”
“Should I bother really because I could
be dead in 2 years”
1
4



“no need to do it unless I am unwell”
“without it I would not be as well
“It’s always horrible and negative”


“my life is not any different to that of my
friend”
”it hits you , I’m dying”




“I put it out of my mind”
“I always forget about it”
“Putting it on the back burner”
“It is difficult to come to terms with”

Candidate Themes
Initial
Codes



Positive views on their ability to influence
health outcomes
Negative views on their ability to influence
health outcomes
Control
Optimism
10
6
2


Adherence
Effectiveness of physiotherapy
9



Problems of having CF
Having a life threatening disease
Normalising having CF


Not acknowledging having CF
Accessing the physiotherapy service but at
a sub-optimal Level

5
2
Overarching
Themes
Final
Themes
Health Beliefs
Health
Beliefs
Physiotherapy
N
8
10
3
10
7
98
Perception of
Having CF
Perception of
of Having CF
Denial
Phase 5. Defining and Naming the Final Themes
Phase five is the final defining and refinement of the themes which ensures that the
final themes identify the essence of the candidate and over arching themes. The two
final themes which emerged across the data set that appeared to influence the
participant’s ability to adhere to physiotherapy treatment were:

Health Beliefs
The theme of “Health Beliefs” is significant because CF is a life limiting disease for
which there is no cure. If a person with CF has positive health beliefs and thinks that
what they are doing can have a positive impact on their health outcomes they are more
likely to adhere to physiotherapy e.g. Interviewee 1, who was adherent, believed that
“physiotherapy controls my disease”. The reverse is true with negative health beliefs
e.g. Interviewee 3, who was non-adherent stated that “I know that physio is important
but I cannot be bothered to do it”.

Perception of Having CF
The theme of “Perception of Having CF” is significant because if a person with CF
accurately perceives their level of disease severity they are more likely to be able to
effectively manage it by adhering to treatment and seek help promptly if they
deteriorate, but if they fail to accurately perceive their disease severity then they are
less likely to contact the CF Team in a timely fashion and less likely to adhere to
treatment, e.g. Interviewee 3, who is non-adherent stated that “If I need treatment I
must be unwell, therefore if I do not have any treatment I must be well. It is a stupid
way of looking at it but that’s it”.
Having named and defined the overarching themes the report below sets them into the
context of the study.
Phase 6. The Report
The purpose of the First Set of Semi-Structured Interviews was to provide background
information to inform the development of the survey and the design of the SMPP so
the report (conclusions) was brief and succinct. As this was just an exploratory
information collecting process, it was not considered warranted to refer the transcripts
and report back to the interviewees.
The report outlines the following conclusions:
99
1. The two final themes of ‘Health Beliefs’ and the ‘Perception of Having CF’
indicated that these factors influenced the interviewee’s approach to their disease,
their management of it and how adherent they were to physiotherapy treatment. For
purposes of clarity these two themes are presented with those from the Second Set of
Semi-Structured Interviews in Discussion of the Findings (Themes) from the First and
Second Set of Semi-Structured Interviews (p.98).
2. The analysis identified that for these three interviewees having CF was a
significant burden which they attempted to rationalise and normalise so that they
could cope more easily. For them physiotherapy was burdensome, time consuming
and its effectiveness questioned by Interviewee 3. The participants in the First Set of
Semi-Structured Interviews gave rich in-depth detail however following analysis of
the transcripts and discussions with the interviewer it was decided that a second set of
semi-structured interviews would be appropriate so that the issues raised in the first
set could be explored in greater depth.
The process of the Second Set of Semi-Structured Interviews is outlined below in
Phase II:
4. 4. Stage I - Phase II - The Second Set of Semi-Structured Interviews
4. 4. 0. Introduction
The aim of the Second Set of Semi-Structured Interviews was to explore issues raised
in the First Set of Semi-Structured Interviews to add richness to the data. The final
themes of ‘Health Beliefs’ and the ‘Perception of Having CF’ needed to be
investigated in greater detail as they appeared to influence the ability of the
interviewees to adhere to physiotherapy treatment. The knowledge obtained by the
clinical psychologist from conducting the First Set of Semi-Structured Interviews
enabled her to obtain greater depth when carrying out the Second Set of SemiStructured Interviews.
4. 4. 1. Selection of Interviewees
Considerable thought was given to the selection of the interviewees to ensure that the
sample was representative of the three categories of adherence, i.e. adherent, partially
adherent and non-adherent, as outlined in Chapter 1, p. 17. Ideally it would be
appropriate to have representatives of all three levels of adherence as well as having a
100
representative sample of males and females. The only way of achieving this was by
purposive and opportunistic selection.
From the total study population (n = 49) a different set of participants from those
chosen to be in the First Set of Semi-Structured Interviews was selected in order to
ensure as wide a range of responses as possible. Of the first 8/49 (16.3%) study
participants approached face-to-face while they were in a stable state, either during an
in-patient stay or during an out-patient visit, 5/49 (10.3%) agreed to take part and
signed the relevant consent form (Appendix L). The potential interviewees were
informed of what the interview process involved and that they could refuse without it
influencing their treatment now or in the future. The remaining 3/49 (6.1%) declined
for a variety of reasons. The interviewees were identified as A, B, C, D, and E. Each
tape-recorded interview took approximately one hour and was conducted in one of the
offices in the Adult CF Specialist Centre. The topics were the same as those used in
the First Set of Semi-Structured Interviews as they had proved to be effective in
eliciting full answers.
The characteristics of the interviewees in the Second Set of Semi-Structured
Interviews are outlined below.
Males
Approached
2
6
Declined
0
3
Adherent
Males
Female
Fig. 4. 8.
Females
2
Partially
Adherent
Non-Adherent
1
1
1
0
Categories of adherence and characteristics of the interviewees in
the second set of interviews
4. 4. 2. Analysis of the Second Set of Semi-Structured Interviews
The Second Set of Semi-Structured Interviews was analysed using a different
approach in order to have as wide a perspective as possible in understanding the
problems the participants had in adhering to physiotherapy to ensure that the design of
the survey and the SMPP were valid and reliable research tools. The Burnard (1991)
approach was chosen.
101
The Burnard Approach
The Burnard (1991) approach is a qualitative research approach ideally suited to the
analysis and interpretation of interviews as it is seeks to understand the experiences of
the interviewees from their perspective. The flexibility of the Burnard (1991)
approach allows the researcher to undertake a systematic pathway to analysing the
data without the need to develop an overarching theme. As CF is a complex life
limiting disease varying in severity, the impact that it would have on the participants’
lives would be wide ranging, making it impossible to have one overarching theme.
The Burnard (1991) approach is descriptive and a form of inductive content analysis,
which is recommended when there are no previous studies dealing with the
phenomenon or when knowledge is fragmented. The aim of the Burnard (1991, p.
461) method is to:
produce a detailed and systematic recording of the themes and issues
addressed in the interviews and to link the themes and interviews together
under a reasonably exhaustive category system
Burnard (1991, p. 461) describes his approach as “a method of thematic content
analysis”. He acknowledges that his work has been adapted from that of Glaser and
Strauss (1967) who developed the ’grounded theory’ approach from other works on
content analysis (Babbie, 1979; Berg, 1989; Couchman & Dawson, 1990; Fox, 1982)
and from the work of Bryman (1988) and Field and Morse (1985) who were
concerned with the analysis of qualitative data. However, the Burnard (1991)
approach does not go all the way to theory building as it only uses the initial
systematic steps adapted from Glaser and Strauss (1967). How the Burnard (1991)
approach (developed and adapted by Dewey, 2006) was used to analysis the data
along with the actions and rationale for using each stage are set out in Table 4. 3, p.
104. .
As the purpose of the Second Set of Semi-Structured interviews was to provide
background information for the development of the survey and the design of the
SMPP the Burnard (1991) approach was adapted where the depth and rigor of
thoroughly completing each stage was not required (Dewey, 2006).
Stage 1 – Initial notes made during data collection
Immediately following each interview verbal feed back was given by the clinical
psychologist to the researcher and recorded in brief “field” notes, which acted as an
“aide memoire” for data collection and data analysis. The notes focused on initial
102
thoughts and feelings about the interview procedure, the content of the interview,
including searching out developing patterns or themes, identifying possibly surprising
phenomena, and being sensitive to the range of views expressed by the participants
(Dewey, 2006). By making initial notes and discussing the interviews with the
interviewer the preliminary development of a coding system emerged.
Stage 2 – Immersion in the data
The researcher read and re-read the final version of the transcripts so she was fully
immersed in the data in order to make sense of it, to learn “what was going on” and to
obtain a sense of the whole (Burnard, 1991; Field & Morse, 1985). This process
enabled the researcher to have a greater awareness of the participant’s ’real world’as
no-insights or theories can spring forth without the researcher being completely
familiar with the data (Polit & Beck, 2006).
103
Table 4. 3. The Burnard (1991) approach developed and adapted by Dewey (2006)
Stage
Action
Rationale
These notes serve as a record and reminder to
the researcher of emerging ideas and
hypotheses
“Immersing” the researcher in the data so they
2.
become familiar with the participants point of
view. This stage helps the researcher to stay
close to the data
Transcripts are read again and
This stage allows more focused analysis since
3.
open coded
the researcher highlights significant units of
meaning (Single word, sentence, phrase etc) as
well as excluding “dross” or background
information and data which are not related to
the research question
The list of open codes are
Continuing on from Stage 3 above, the
4.
surveyed by the researcher and
researcher continues to group related codes to
collapsed into higher order themes together
The list of themes is reviewed and Careful checking of the initial themes identified
5.
any repetitious or similar themes avoids repetition and moves towards the final
are removed
list of themes
Two independent colleagues are To enhance validity of the data analysis and to
6.
invited to open code the same data Safeguard against research bias
set
Transcripts are compared with the Returning to the transcripts helps to establish
7.
list of themes
the degree to which the data analysis has stayed
close to the original meaning of the transcripts.
Adjustments are made as necessary
8, 9. Each transcript is worked through Using the final list each part of the transcript is
a final time using the agreed list of re-located to a code or theme and then grouped
&
codes and themes to code
together either by cutting or pasting (by hand)
10.
significant units of meaning
or “highlighting techniques” using computer
Software
A sub-group of the participants is This stage known as “respondent validation,”
11.
asked to check the appropriateness acts as another method of measuring the
of the themes
presence of researcher bias
12. & Writing up – where all sections are Methodical filing assists the researcher during
filled together with complete
the write up process and provides an “audit
13.
transcripts of interviews
trail” of decision making. Producing a report of
the findings which includes relevant extracts
and an analysis
Writing up
Producing a report of the findings which
14.
includes relevant extracts and an analysis
1.
Initial notes are made following
the interview regarding topics
discussed
Interview transcripts are read
through and annotated
104
Stage 3 – Open coding of the interview transcripts
After re-reading the transcripts again the process of systematically open coding the
data commenced by recording, in the text and margins, notes and headings relevant to
all the aspects of the content (Burnard,1991) and highlighting and assigning codes to
words that had specific characteristics within the text as they emerged, e.g.
Interviewee D’s “physiotherapy doesn’t make any difference if I do it” was coded as
“perceptions of having CF”. Codes have been described as “tools to think with” as
they allow the data to be thought about in a different way (Coffey & Atkinson, 1996)
and they facilitate the process of analysis. Open coding, in the form of headings,
focused the analysis so that words and phrases reflecting important “core ideas and
concepts” (Rubin & Rubin, 1995) were identified. These “core ideas and concepts”
made up a distinct unit of meaning. A unit of meaning contains words, sentences or
paragraphs containing aspects related to each other through their content or context
(Graneheim & Lundman, 2004).
The units of meaning that had a similar content were grouped into initial themes. A
theme is a group of content that shares a commonality (Krippendorff, 1980) that is
exhaustive, mutually exclusive and descriptive of the content. Themes are descriptive
and act as a thread between the units of meaning and assist in organising the data
(Dewey, 2006). Each initial theme was identified by the use of key words or phrases
copied from the highlighted text in the units of meaning. Although not part of the
Burnard (1991) approach a brief synopsis was made of each interview incorporating
the initial themes in order to facilitate organising the data (Dewey, 2006) and to give
an accurate understanding of the participant’s “life world” (Burnard, 1991). The
themes were continually and systematically grouped and re-grouped, identifying
similar content to reflect the text as a whole.
Synopsis : Interviewee C – Female Student
Initial Themes

Positive outlook.

Sees physiotherapy as part of a daily routine.

“Normalises” her physiotherapy treatment - no different from “normal” people who want to
stay healthy.

Uses physiotherapy as a means of controlling her disease. Balances treatment with the need to
lead a normal life.

Does not feel guilty if she takes time off work to give herself more time to get better.
Fig. 4. 9. Sample synopsis of interview themes
105
Stage 4 – Collapsing of themes
The number of themes was reduced by collapsing those that were similar or related
into broader or higher order categories (Burnard, 1991; Dewey, 2006; Dey, 1993) for
the purposes of clarity.
Memorising Memo

Themes Collapsed: ‘Diagnosis’ and ‘Living with CF’ into ‘Strain of having a life
threatening disease.

Being diagnosed at birth results in an emerging awareness of the impact of having CF
while being diagnosed as an adult is a more traumatic experience.
Categories collapsed but an awareness of the interviewees background is needed
to put their comments into context.
Fig. 4. 10. Memo providing an audit trail of the analysis
A memo was made of the ‘collapsing’ process so there was a clear audit trail of the
analysis (Fig. 4. 10). The example above records the reasoning behind the meaning of
two category headings ‘Diagnosis’ and ‘Living with CF’ being collapsed to provide a
new overarching theme of ‘Strain of having a life threatening disease’.
Stage 5 – Producing a final list
The list of themes and sub-themes was revised several times during this stage to focus
the analysis and reduce overlapping of themes.
Stage 6 – Validity of the themes
A nursing colleague, who was familiar with using the Burnard (1991) approach for
analysing interviews, was involved at this stage. The colleague read through the
transcripts and independently generated her own themes without seeing the
researcher’s list. The aim of this stage was to attempt to enhance the validity of the
analysis and to guard against the researcher’s bias. The two sets of themes were
similar, but not identical
106
Independent Assessor
Researcher
Stay Alive
Perception of having CF
Support (with the burden of coping with CF)
Strain of having a life threatening disease
Knowledge of CF (need to make a balance of
life/ perspective )
Physiotherapy Treatment – Life balance
Compliance with physiotherapy
Recognising the importance of
physiotherapy treatment
Finding a suitable physiotherapy technique
Control
Concept of guilt
Fig. 4. 11. Comparison of themes identified by researcher and independent assessor
The interviews showed strong recurring themes that were evident to both the
researcher and the independent assessor and highlighted the significant features of CF
from the participant’s perspective. The themes from the two sets of analysis were
indicative of how the interviewees coped with their disease and the factors that
influenced their ability to adhere to physiotherapy treatment.
Stage 7 – Verifying the themes
Re-reading of the transcripts alongside the final agreed list of themes and subheadings was carried out to ensure that the themes covered all aspects of the
interviews. The purpose of this stage was to check that findings from the collected
relevant data were not based on the researcher’s own attributions but representative of
the participants views. Adjustments were made as necessary.
Stages 8, 9 and 10 – Finalising the list of themes
As the interviews were not an end point in their own right, and the six themes that
emerged were similar to the four overarching themes that were evident in the First Set
of Semi-Structured Interviews, further in-depth analysis was not considered to be
warranted.
107
Set o
4 Overarching Themes from the First Set of
Semi-Structured Interviews (n = 3)

Health Beliefs

Physiotherapy
6 Themes from the Second Set of SemiStructured Interviews (n = 5)





Experience of having CF
Denial
Control
Recognising the importance of
physiotherapy treatment
Balance between adhering to
physiotherapy treatment and leading
a normal life

Perception of having CF

Concept of guilt

Strain of having a life threatening
disease
Fig. 4. 12. Themes for the two sets of semi-structured interviews
In view of the flexibility of the Burnard (1991) approach it was decided not to
condense the six themes in the Second Set of Semi-Structured Interviews any further
as they were similar to those identified in the First Set of Semi-Structured Interviews
but indicated greater depth. By condensing the six themes further valuable insights
into the ‘life world’ (Burnard, 1991) for people with CF may have been missed.
Stage 11- Respondent validity
In the Burnard (1991) approach, the work is given to the participants so that the
interpretative validity of the analysing process can be checked, but in this exploratory
study this stage was omitted because the semi-structured interviews were conducted to
inform the development of the research tools, i.e. the survey and the SMPP, and were
not an end point in their own right. Due to time constraints, the infrequency of the
participants’ visits to the CF clinic, the wide geographical distribution of the study
population and the time it would take to carry out this process, the transcripts and the
list of themes were not returned to the participants, and this stage was omitted.
Stages 12, 13 & 14 - Writing up the Findings
Once the interview data had been analysed the process was stopped as sufficient
information had been provided to inform the development of the survey and the
design of the SMPP. The writing up of the interviews included verbatim quotes
selected on the basis that they provided an example of the theme being described
(Dewey, 2006) and helped the reader to judge how well the explanations were
108
grounded in the data (Murphy, Digwall, Greatbatch, Parker, & Watson, 1998). Where
appropriate the discussion of the findings was linked to the literature on the topic in
order to make a comparison with findings from previous studies.
Because of the similarity of the themes in the First and Second Set of Semi-Structured
Interviews, and for purposes of clarity and brevity, they are discussed together in the
following section.
4. 4. 3. Discussion of the Findings (Themes) from the First and Second Set of SemiStructured Interviews
The two themes that emerged from both sets of semi-structured interviews ‘Health
Beliefs’ and ‘Perceptions of Having CF’ are presented below:

Health Beliefs
The influence of health beliefs in the management of CF has been identified in two
other studies on adherence to physiotherapy in CF (Carr et al.,1996; Myers & Horn,
2006). Both studies considered that if people with CF had positive health beliefs they
were more likely to adhere to treatment because they felt that they could influence
their health outcomes for the better, with the converse being true for negative health
beliefs e.g. Interview 1, who was adherent, stated that “physiotherapy controls my
disease …it has to be done.” However in the management of chronic conditions health
beliefs can change over a period of time with corresponding changes in levels of
adherence. Positive health beliefs co-inside with a positive/optimistic attitude which
enables a person with CF to cope better with their disease (Abbott et al., 2001) and
therefore be more likely to adhere to treatment. Health beliefs and how people with
CF perceive their disease are interlinked.

Perception of Having CF
One of the most influential factors in adherence to physiotherapy is the participant’s
perception of what having CF means to them. Several studies (Bucks et al., 2009;
Daniels et al., 2011) have shown that a discrepancy can exist between how a person
with CF perceives their health to be and the objective measurements of their disease
severity. The theme “Perception of Having CF” relates to the interviewees perspective
of having CF and their physiotherapy treatment. Their perspectives varied from
acceptance and being adherent to physiotherapy treatment to denial and being nonadherent. Perception (Collins, 2006, p. 83) “is the process of attaining awareness or
understanding of information”. When applying this definition to the study it would
109
mean the participant receiving, collecting and internalising information to formulate
their own views of their disease, irrespective of the information given to them by the
professional. Some people with CF have a tendency to be “over optimistic” about the
severity of their disease (Abbott et al., 1995; Bernard & Cohen, 2004; Huyard, 2008)
while others have a sense of hopelessness, i.e. Interview E who stated that “it’s always
horrible and negative; should I bother really because I will be dead in two years.”
Some participants demonstrated a desire to “normalise” their condition and to be
positive in their approach to it. Interviewee A commented that she did not think that
her life was “any different to that of my friend. I do what they do”. This
“normalisation” gave her a positive approach to coping with CF. In some instances
however, too positive a stance can be a form of denial. Interviewee 2, who was
partially adherent with a moderate level of disease severity, commented that “CF does
not affect my life at all”. He coped by only doing physiotherapy when he was unwell.
A coping strategy of denial, in a mild form, can enable people with CF to get on with
their lives and not always be troubled by it (Abbott et al., 2001). However, if taken
too far it can result in denying the serious impact CF can have on their health
outcomes by not promptly accessing medical and physiotherapy services. These
factors are relevant as physiotherapy is one of the least liked and most poorly adhered
to of all CF treatments (Abbott et al., 1996; Christian, 2007; Daniels, 2010; White et
al., 2007; Zindani et al., 2006). It is not the degree of disease severity which can
influence adherence to physiotherapy treatment but how accurately the level of
disease severity is perceived.

Strain of Having a Life Threatening Disease
The strain of having a life limiting disease is divided into four sub-sections:
1. Diagnosis
All of the interviewees spoke about how distressing it was to have CF. Two
Interviewees, E and D, were diagnosed late, when they were teenagers, and this had a
profound affect upon their lives. For Interviewee D it meant that her whole life had
been “turned upside down” and for Interviewee E it meant that “I could be dead in
two years”. The impact of having a life limiting disease, for people who had
previously considered themselves to be healthy, was a traumatic experience and it
profoundly affected their approach to life and how they perceived having CF. People
with CF want to lead a life style similar to their peers (Daniels, 2010) which is why
patient preference is an important influence in adherence to daily physiotherapy
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treatment. People with CF have to fit in complex treatment programmes, so selecting
an ACT that they prefer encourages adherence (Daniels, 2010).
2. Telling Others
Another difficulty identified was whether to tell other people about their condition.
The literature suggests that it appeared that most people with CF tell their close
friends and partners but saw no reason to share their diagnosis with other people
(Abbott et al., 1994). Limiting the number of people who know about their condition
gave them an opportunity to be treated as a peer in their work/social group.
3. Fertility
The strain for the women who want to have children or, in the case of Interviewee D
who had two young children, is considerable. Interviewee D stated that “it hits you, I
am dying… “It doesn’t make you feel any better to know that people have worse
problems”. Interviewee D recalled reading that “mothers with CF who had children
rarely make it past the first decade of their children’s lives”. Interestingly neither of
the men spoke about their potential inability to have children but all of the women
voiced their concerns about problems of sub-fertility. Interviewee E was undergoing
In Vitro Fertilisation (IVF) treatment and was aware that this was a necessary
procedure because having CF results in reduced fertility (Edenborough et al., 2008)
She highlighted this by saying that she “had a period of transition for a few years;
after that I was getting used to the fact that actually I have to be more vigilant. I have
to pay more attention to my health”.
4. Everyday Activity
It is important that people with CF lead as normal a life as possible and an example of
this is when people with CF take a positive approach to their health and well being by
undertaking activities such as going to the gym (Bradley & Moran, 2011). This can be
embarrassing if exercising results in coughing in public. Interviewee E expresses her
embarrassment about coughing by stating that “you think Oh God! People are looking
at me”. In order to cope with this type of situation some people with CF say that they
have asthma because asthma is not life threatening, it is better understood and avoids
having to explain what CF is. Alternatively they go to the gym when they are well. In
this context these avoidance/coping strategies are synonymous with positive health
beliefs, as they demonstrate a recognition of the importance of exercise and activity in
keeping fit and well, alongside a desire to lead a life similar to their peers.
111

Control
Another concern verbalised was the degree of control that the interviewees thought
they had over the course of their disease. If the interviewees perceived that what they
do can makes their lives better, e.g. adhering to physiotherapy treatment improves
their health outcomes, it enabled them to establish a concept of having control over
their disease and their life e.g. Interviewee C stated that “I’m in control…… rather
than it’s controlling me” and Interviewee 1 stated that “physiotherapy controls my
disease”. It is interesting to note that if people with CF make the connection between
physiotherapy treatment and control then they can use their physiotherapy treatment
as a control mechanism, which in turn can contribute to optimising their ability to
adhere to their physiotherapy treatment.

Recognising the Importance of Physiotherapy Treatment
Although all the interviewees in the Second Set of Semi-Structured Interviews
acknowledged the importance of doing physiotherapy, only two interviewees reported
themselves as being adherent while in the First Set of Semi-Structure Interviews two
of the participants, Interviewee 1 (adherent) and Interviewee 3 (non-adherent)
considered physiotherapy to be important while Interviewee 2 (partially adherent) did
not consider routine physiotherapy to be of benefit. Interviewees A and E in the
Second Set of Semi-Structured Interviews perceived physiotherapy to be as a means
of controlling their disease and improving their health outcomes. Interview B stated
that he did physiotherapy “to clear my chest to help me feel better during the day…I
think that without it I wouldn’t be so well”. Those who previously did not adhere to
physiotherapy treatment such as Interviewee D (“I am trying to do it far more now…..
It is easy not to give it enough time”), did recognise its importance but had difficulty
doing it because it was ”time consuming” and “boring” as other research has indicated
(Abbott et al., 2009; Carr et al.,1996). Interviewee 3 stated that “I know that physio is
important but I cannot be bothered to do it”. There is a conundrum of trying to find a
balance in their lives, between doing physiotherapy treatment and making sure they
have a good quality of life (Daniels, 2010).
The effectiveness of physiotherapy ACTs was an issue raised by several of the
interviewees. If the ACT carried out was perceived by the interviewee to have no
obvious benefit then they were less likely to continue with it. Interviewee E referred
to the fact that she was using the PEP mask as treatment but considered that it was not
as effective as exercise in clearing her chest. It is only in recent years that the short
term benefits of ACTs have been established in five Cochrane Reviews (Elkins et al.
112
2009; Morrison & Agnew, 2009; Main et al., 2009; Robinson et al., 2010; van der
Schans et al., 2009), the long term benefits in a study by Pryor et al. (2010), and also
that patient preferences are important in influencing the ability to adhere to
physiotherapy treatment (Daniels, 2010; Pryor et al., 2010).

Adhering to Physiotherapy Treatment – Life Balance
As people with CF are living longer and leading more normal lives, the pressures and
burdens of physiotherapy treatment encroach upon their daily life (Daniels, 2010).
This is particularly true in the case of Interviewee D who was a wife, a mother of two
young children and, in addition to a part-time job, had to manage her disease as well.
Her desire to be a “good mum and wife,” and ensure that her children had a normal
life, meant that at times she was not able to do her physiotherapy as she could not fit it
into her busy schedule. Her difficulty in adhering to physiotherapy treatment resulted
in Interviewee D neglecting her health care. She questioned her ability to strike a
balance between doing physiotherapy treatment and leading a normal life as a wife
and mother e.g. “I wonder whether there really is a boundary…… I now have to
physically say to myself stop, give yourself half an hour and put your feet up”. She
acknowledged that if she does not look after herself then she will not be well enough
to be the type of mother that she wants to be.
Another way of coping with the treatment/life balance was expressed by Interviewee
C who stated that physiotherapy was “part of my routine”. Although single and
working part-time she struck a balance in her life between doing physiotherapy
treatment and having a “normal” life by making physiotherapy part of her normal
daily routine e.g. “I just got better at balancing, living the life I wanted to lead and
living the life I wanted to live with doing the treatment. I think it’s just as I got older
the balance kind of levels off”. However, Interviewee 1 considered that
“physiotherapy does not interfere with my life but is a big part of it ….. physiotherapy
controls my disease”. For those who recognise the importance of physiotherapy and
use it to control their disease it can result in a good balance being achieved between
having CF and leading a normal life (Daniels, 2010; Kettler et al., 2002; Pryor et al.,
2010).

Concept of Guilt
It was evident that missing a treatment in some instances was associated with
guilt. The interviewees recognised the importance of doing treatment and became
concerned when they were not doing it to the level that they thought they should.
113
Although feeling “guilty” if they missed a treatment, Interviewee C did not dwell on it
and considered that the balance between daily living and physiotherapy treatment
could not always be perfectly managed. Although the interviewees felt guilty about
missing physiotherapy it did not lead to increased levels of adherence.
4. 5. How the Findings from the First and Second Set of Semi-Structured
Interviews influenced the progression of the study
Once the analysis of the interviews was completed and themes apparent the next stage
was to use the information to develop the survey and the design of the SMPP. The
purpose of the survey was to collect information from the whole study population (n =
49) before and after the intervention (SMPP), so that any changes in adherence
behaviour that may have occurred as a result of the intervention could be measured.
The study set out to use the Professionalising typology of an action research approach
which required the participants to be actively engaged in the research process. In a
health care setting it is challenging to implement pure action research as the
participants cannot always be fully engaged in the process, because they do not have
the knowledge and skills to work as equal partners with the professional (Hart &
Bond, 1995) in this process led and pre-determined methodology. It became apparent
following the analysis and findings from the two sets of semi-structured interviews
that the experiences and insights of the participants would not lead to them having a
significant enough influence on the development of the survey and the design of the
SMPP as would be in keeping with an action research approach. Because the
researcher had collected sufficient information from the semi-structured interviews
and had an extensive knowledge and clinical experience of CF, the study populations’
further involvement in the design of the research tools was not warranted. Their
involvement was confined to selected participants being part of two different
representative samples in the pilot studies for the survey and the SMPP, participating
in two self-administered questionnaires in the survey and using the SMPP. It was felt
that the research objectives of the study would be met by broadly following a
Professionalising typology of the action research model (comprising Plan,
Action/Intervention, Evaluation and Reflection), but without the participants being
involved to the extent that would be required in a fully implemented action research
approach. In view of this decision the research process was remodelled (Fig. 4. 13,
p.115) but the key stages of the study remained unchanged and are outlined in Table
4. 4., p. 116.
114
Chapter 4. Plan – The Survey
 Designing the survey
 Piloting the survey
 Issuing the first part of the survey – Pre-Intervention Physiotherapy Questionnaire
 Results and analysis of the Pre-Intervention Physiotherapy Questionnaire
Chapter 5. Intervention/Action - The SMPP
 Designing the SMPP
 Piloting the SMPP
 Implementing the SMPP
 Issuing the Post-Intervention Physiotherapy Questionnaire
Chapter 6. Evaluation
 Analysis and results of the Pre and Post-Intervention Physiotherapy Questionnaires
Chapter 7. Reflection
 Discussion
 Conclusions
 Recommendations for clinical practice
 Recommendations for future research
 Limitations
 Reflection
Fig. 4. 13. The re-modelled research process
115
Table 4. 4. Key stages of the Study
Stages of the Study
Study Population Selected
Actioned
By
R
Inclusion and exclusion criteria applied
Study population recruited
R
PLAN
First Set Semi-Structured Interviews
Analysis of First Set of Semi-Structured Interviews
CP
R&CP
Second Set of Semi-Structured Interview
Analysis of Second Set of Semi-Structured Interviews
CP
R & CP
Pre-Intervention Physiotherapy Questionnaire
developed from the findings (themes) of both semi-structured interviews
Pre-Intervention Physiotherapy Questionnaire piloted
R
Pre-Intervention Physiotherapy Questionnaire issued
R
R
Pre-Intervention Physiotherapy Questionnaire returned and analysed
INTERVENTION /ACTION
SMPP designed
R
SMPP piloted - Sub-group
R
Start of Intervention: SMPP issued
R
3 month Follow-Up:
SMPP reviewed and evaluated using Feedback Chart
Finish: 6 month Follow Up:
SMPP reviewed; Post-Intervention Physiotherapy Questionnaire issued
Post-Intervention Physiotherapy Questionnaire returned
R
R
EVALUATION
Pre & Post Intervention Physiotherapy Questionnaires
Analysed and Feedback Chart evaluated
REFLECTION
Legend
CP = Clinical Psychologist
R = Researcher/Physiotherapist
116
R
4. 6. Plan - The Survey
4. 6. 0. Designing the Survey
The design of the survey was part of the development of the research tools that would
be required to accurately collect data in order to identify the problems adults with CF
have with adhering to physiotherapy, and to inform the development of the SMPP.
The research tools needed to be sensitive enough to record changes in behaviour that
may have occurred as a result of using the SMPP. The information from the First and
Second Set of Semi-Structured Interviews contributed to the development of the
survey to ensure that its construction was content specific and relevant.
Surveys are a cross-sectional, inexpensive, descriptive data collection method used
where the purpose is to describe how many people in a given population possess a
particular attribute or opinion at a particular time, and aim to describe what exists
(Robson, 2006). They investigate the relationship between variables but do not
determine causation (Oppenheim, 1992). The survey used in this study was a selfcompleted questionnaire whose purpose was to provide a simple and straightforward
approach to obtaining data on attitudes and values from the whole study population (n
= 49) at a particular time period.
A survey gives anonymity to the respondent, allows for individual perceptions to be
expressed via open questions, and can act as a confirmation tool in relation to other
findings because there are set questions with responses that can be compared. The
weaknesses are that it assumes literacy, relies on honesty, risks lack of clarity in the
questions (but this can be reduced by conducting a pilot study to test it) and is weak
on validity, because if the questions are not framed accurately the information
collected will not enable the research questions to be answered (Cohen et al., 2011;
McKenna et al., 2006). In considering the design tool, recognition was given to the
disadvantages of a survey, but they outweighed the advantages. The design of the
survey involved the participants in a pilot study to enhance its validity and reliability.
The survey was cross sectional and issued at two points during the study in order to
identify and describe any changes which may have occurred following the
implementation of the SMPP.

Part (a) - the Pre-Intervention Physiotherapy Questionnaire which was issued
at the beginning of the intervention period
117

Part (b) – the Post-Intervention Physiotherapy Questionnaire which was
issued at the end of the intervention period
The Pre and Post-Intervention Physiotherapy Questionnaires both recorded the same
information but the Post-Intervention Physiotherapy Questionnaire asked two
additional questions on the effectiveness of the SMPP to optimise the ability to adhere
to physiotherapy treatment. At the time of the study no questionnaire had been
specifically designed involving adults with CF in investigating the problems they
were experiencing with adhering to physiotherapy. The findings from the two sets of
semi-structured interviews enhanced the validity and reliability of the survey and
contributed to the design of the questions so that they were sensitive enough to
identify the problems of adhering to physiotherapy from the participant’s perspective.
Sensitivity was achieved by ensuring that the questions were relevant to the problems
the participants had raised in the semi-structured interviews and that the language
used to frame the questions was appropriate.
At the time of the study, apart from the Carr et al. (1996) paper, adherence to
physiotherapy had been investigated in adults with CF (Abbott et al.; 2001; 1996;
1994; Conway et al., 1996; Dodd & Webb, 2000) as part of a larger study into
adherence to treatment in CF. The questionnaires used in these studies were
developed by the researchers without undertaking any preliminary measures that
included people with CF, i.e. semi-structured interviews, that would provide the
researcher with background information to help them in the development of their
questionnaires. The Carr et al. (1996) study, however had developed a questionnaire
(Appendix M) that was used as a foundation for the survey in this study, as it was the
only questionnaire specifically designed to investigate adherence to physiotherapy in
CF in the UK. As in the above mentioned studies the participants in this study had not
contributed to the design of the questionnaire.
The Carr et al. (1996) questionnaire was not used as it stood because it failed to
collect sufficiently detailed information on factors such as disease severity, the
demographics of the study population and what problems the participants had in
adhering to physiotherapy. It also failed to collect qualitative data seeking the
thoughts, feelings and perceptions of the participants (Carr et al., 1996), which are
important because if the problems of adhering to physiotherapy are not identified
from the participants’ perspective then finding an effective solution would be
compromised. The Carr et al. (1996) self-administered questionnaire had not been
validated, therefore very careful consideration was given to the questionnaire design
for this study, i.e. what questions needed to be asked, how they should be asked and
118
why they should be asked, in order to illicit valid and reliable data. In view of the
above factors a self-administered questionnaire was designed so that the participants
could complete it in their own time and if necessary it could be posted to them.
Considerable attention was paid to the wording of the questions asked to ensure the
accuracy of the information collected (Boynton & Greenhalgh, 2004; Oppenheim,
1992). In general two types of questions were asked; open questions seeking an
opinion e.g. “to what extent do you consider that your attitude to CF influences the
course of your disease” and closed questions in the form of multi-choice answers, e.g.
“what is your marital status – single/separated/divorced/ with a partner/re-married”.
The questions needed to be clear, succinct, and unambiguous in their wording.
Leading questions were avoided as they would imply a certain answer which could
prejudice the replies. The terminology of each question was carefully considered so
that questions were phrased in a positive style to avoid causing any offence.
Embarrassing questions such as those that related to coughing were avoided, but by
using open questions about the impact of the disease it was anticipated that this would
lead participants to freely share their embarrassing moments in their own words.
Questions from the Carr et al. (1996) questionnaire designed to establish the social
characteristics, physiotherapy regimens and medical treatment of their study
population were used or adapted for the purposes of this study. Additional questions
were added by the researcher/physiotherapist who, taking into account the findings
from the two sets of semi-structured interviews, designed questions that sought to
establish the study population’s perceptions of the efficacy of physiotherapy, the
problems they encounter in doing physiotherapy and their health beliefs, e.g. Q. 46.
“To what extent, if any, do you think you have control over the course of your
disease?”
A range of approaches by which the questions could be answered were used, e.g. open
and closed questions, multiple choice and Likert scales were used. An example of a
multiple choice question is outlined below:
Q. 11 Over the past month how has your health been
1. [ ] very good
2. [ ] good
3. [ ] unwell
4. [ ] very unwell
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Likert scales, which measure attitude with all items measuring the same
dimension (Murphy-Black, 2006), were used as they are a psychometric scale to
which respondents specify their level of agreement to a statement. As Likert scales are
numbered, it facilitates the analysis of the replies. Multiple choice questions were also
used to encourage a high response rate as they can be quickly answered. How the
questionnaire in the survey was scored is described below.
4. 6. 1. Purpose of the Pre-Intervention Physiotherapy Questionnaire
A full description of each participant was sought through the collection of information
regarding demographic data, physical health and the physiotherapy regimen each
participant used. Each section is detailed below :1.
Demographics - Base line quantitative and qualitative information on the
social characteristics of the participants including age, sex, age at diagnosis
and current employment status.
2.
Qualitative information was collected using open questions which enabled the
participants to express their beliefs, perceptions and feelings in their own
words and were informed by the findings from both sets of semi-structured
interviews e.g. Q. 21. What are your reasons for not doing chest
physiotherapy?
3.
Physiotherapy Treatment - The ACT and exercise undertaken by the
participants was self-reported using multiple choice or open ended questions.
Questions were designed to identify how adherent to physiotherapy treatment
the participants reported themselves to be, what difficulties they had in
adhering to physiotherapy treatment and their views on their physiotherapy
treatment. Examples of such questions are outlined below:


Open questions - Q. 25. If you miss a physiotherapy session please
state why……………….

Multiple choice - Q. 12. How much to you agree or disagree with the
following statement? Doing chest physiotherapy is important to my
feeling of well being. Please tick of one of the following boxes
1.
2.
3.
4.
5.
Strongly agree
Agree
Neither agree or disagree
Disagree
Strongly disagree
120
(
(
(
(
(
)
)
)
)
)
4.
Medication Time Pre and Post-Physiotherapy – the amount of time taken to
prepare inhaled medication prior to chest physiotherapy and the time taken to
clean equipment post-nebulisation was elicited by self-reporting.
5.
The major themes identified in the semi-structured interviews were explored
using open questions e.g. Q. 47. ‘To what extent, if any, do you think that
you have control over the course of
your disease?’ in order to identify
whether the participants had positive or negative health beliefs towards their
disease, and to subsequently
investigate whether there was a correlation
between their health beliefs and their adherence to physiotherapy treatment.
e.g. Q. 8. ‘Do you think you have CF very mildly/mildly/moderately/
moderately-severe/severe.’ In order to inform the theme “Perception of
Having CF,” and how the participants’ perception of their disease might
influence their ability to adhere to physiotherapy.
4. 6. 2. Piloting the Pre-Intervention Physiotherapy Questionnaire
Once the design of the Pre-Intervention Physiotherapy Questionnaire had been
completed it was piloted to ensure that the questions were unambiguous and userfriendly in order to enhance its reliability and validity. A simple convenient sampling
frame of 12/49 (24.4%) participants was chosen from the total study population (n =
49). Following discussions with the statistician it was considered that this would be a
valid and reliable sub-sample representative of the whole study population,
irrespective of their category of adherence. The first 12 participants in a stable
condition were chosen randomly during an inpatient stay or during an out-patient visit
on a first come first approached basis by the researcher/physiotherapist. All 12 agreed
to be in the pilot study. Of the 12 who agreed to be in the pilot study six were inpatients and six were out-patients; six were male and six were female. Their ages
ranged from 17 – 39 (the age range of the whole study population was 16 – 53).
Being approached by the CF researcher/physiotherapist may have influenced the
participants into volunteering for the pilot study but it was the only practical way to
approach them. It was explained that they did not have to fill in the Pre-Intervention
Physiotherapy Questionnaire but to read the questions and make sure that they
understood what was being asked of them. The researcher/physiotherapist checked
their understanding by asking questions to ensure that they knew what was being
asked of them. They were also requested to make any comments or ask any further
questions if they wished to do so. The information collected was used to develop the
121
final version of the Pre-Intervention Physiotherapy Questionnaire and was not
included in any of the findings or results.
Evaluation of the pilot study and recommendations for the Pre-Intervention
Physiotherapy Questionnaire
Of the 12 participants involved in the pilot study, six gave recommendations for
making some alterations e.g. the order of questions changed to a more logical
sequence while six thought that the questionnaire was appropriate as it stood. The redesigned Pre-Intervention Physiotherapy Questionnaire was finalised for use in the
study (Appendix N). The final version was considered to be a sufficiently valid and
reliable tool to elicit the participants’ perception of physiotherapy, their perception of
having CF, their health beliefs and the problems they encountered in adhering to
physiotherapy.
4. 6. 3. Issuing the first part of the survey – the Pre-Intervention Physiotherapy
Questionnaire
The eligible participants who had consented be in the study (n = 49) were approached
by the researcher/physiotherapist during out-patient visits or during in-patient stays
when they were in a stable state. These 49 participants also included the 12/49
(24.4%) participants who had taken part in the pilot study for the Pre-Intervention
Physiotherapy Questionnaire as they were part of the study group and were required
to fill in the finalised version of the Pre-intervention Physiotherapy Questionnaire so
there was consistency of data for the purposes of analysis and evaluation.
The purpose of the self-administered Pre-Intervention Physiotherapy Questionnaire
was explained to the study participants (n = 49), who were informed that they could
decide whether to complete it there and then or at a later date and return it in the
stamped addressed envelope supplied. The study participants were informed that if
they had any queries or difficulties completing the questionnaire then they were to
contact the researcher using the telephone number on their Patient Information Leaflet
(Appendix F). The use of the same self-administered questionnaire issued at the
beginning and end of the study period enabled a continuous evaluation process to be
put in place, as the same data was gathered at the beginning and end of the
intervention period so that any changes following the implementation of the SMPP
could be identified. To facilitate the evaluation of the SMPP two additional questions
were inserted into the Post-Intervention Physiotherapy Questionnaire (Appendix O)
which sought the participant’s views on the effectiveness of the SMPP to optimise
122
their ability to adhere to physiotherapy. The Post-Intervention Physiotherapy
Questionnaire is discussed in greater detail in Chapter 5, p. 144.
4. 6. 4. The Scoring System for Open and Multiple Choice Questions Used in the
Survey
The open and multiple choice questions were identical in the Pre and PostIntervention Physiotherapy Questionnaires. A scoring system (Appendix P), devised
by the researcher/physiotherapist, was used so that the answers could be analysed and
comparisons made between the replies before and after the implementation of the
SMPP. Each of the multiple choice questions had a choice of up to six possible
answers which were coded with a number from 1 - 6. The numbers were for the
purposes of facilitating analysis and did not have any specific value attached to
them. Where the answers to the open questions could be grouped together these
groupings were also given a numerical code that did not have a specific value.
Attitudes in the questionnaire were measured by means of Likert-style scales, ranking
attitude choices.
4. 7. Analysis and Results of the Study Population
4. 7. 0. Introduction
The results are presented as follows:


The Study Population
Analysis of the Pre-Intervention Physiotherapy Questionnaire
4. 7. 1. Study Population
Of the 49 eligible participants who consented to be in the study and were issued with
the Pre-Intervention Physiotherapy Questionnaire 43/49 (87.7%) completed it. Of the
6/49 (12.3%) who failed to return the questionnaire 3/49 (6.12%) were male and 3/49
(6.12%) were female. :
123
Table 4. 5. The study population
The Study Population
Study population selected from ‘full care’ patients in the Adult CF Clinic
Application of inclusion and exclusion criteria
Eligible to be in the study
Number who consented to be in the study and were issued with the PreIntervention Physiotherapy Questionnaire
Males entering the study
Females entering the study
Total Study Population
The number who entered the study by completing the Pre-Intervention
Physiotherapy Questionnaire
Numbers
61
%
55
49
100
17
26
34.6
53.1
43
87.7
The Pre-Intervention Physiotherapy Questionnaire was analysed using the Statistical
Package for the Social Sciences (SPSS) Windows 10 for descriptive statistics, bivariate statistics and prediction of numerical outcomes i.e. linear regression. The
values of each statistical test are presented with each result.
4. 7. 2. The study population compared to the National Cystic Fibrosis Database
The characteristics of the study group were compared to the CF National Database
(CF, 2000) population that was current at the time of the study, for FEV1, BMI and
age, so that the general health of the study group could be put into context. It was
important to know whether the study population’s characteristics were comparable or
not to the CF National Database (CF Trust, 2000) population and whether the results
and findings could be generalisable.
The CF Trust established the National CF Database (CF Trust, 2000), which was the
forerunner of the UK CF Registry, so that all the adults and children in the UK with
CF were registered for the purpose of planning care, monitoring trends and raising
standards of care. It was not possible to have assess to the raw data for the National
CF Database population. Chi-squared tests were used to compare the frequency
distributions of the study population to the National CF Database (CF Trust, 2000).
Where small frequencies were present the Fisher-Freman-Halton exact test was used.
The results and findings are described in the following sections.

FEV1
The Forced Expiratory Volume in 1 second (FEV1) is a very simple standardised
objective pulmonary function test that is a well established marker of disease severity.
The American Thoracic Society (1989) had graded disease severity in broad terms
124
into three grades Mild >75%, moderate 40% - 60% and severe < 40%. For the
purposes this study the FEV1 was sub-divided into the following five grades: less than
30% severe, 31%-40% moderate/severe, 41%-60% moderate, 61%-79% mild, with
80% and above graded as normal. This five level grading system was sensitive and
equated with the subjective grading system used in this study in the Pre-Intervention
Physiotherapy Questionnaire Q. 8 on how the participants perceive their health to be,
thus enabling the relationship between perceived disease severity and FEV1 to be
explored.
30
Percentage
25
20
CF Database
Study Group
15
10
5
0
20
30
40
50
60
70
80
90
100
Fev1 (% of Predicted)
Fig. 4. 14. Distribution of FEV1 in the study group and the National CF Database
The mean and Standard Deviation (SD) of FEV1 in the study population was
48.5% and 20.2% respectively. The mean and SD of the study group males and
females was 45.1% (16.1%) and 51.9% (21.3%) respectively. The distribution of
values, which ranged from 17% to 90%, is displayed in Fig. 4. 14.
In the study population 30/49 (61.2%) participants produced an FEV1 of 50% or less
compared to 945/2394 (39%) in the National CF Database (CF Trust, 2000)
population. This difference is statistically significant at the 5% level (Chi squared =
16.2, P < 0.001). All participants were clinically stable when their FEV1 were
measured. It would appear that the study group were less well than the database
group. The results were skewed by the fact that 5/49 (10.2%) of the study group had a
FEV1 <30%. Relative to the National CF Database of 2,394 the study population of 49
was small and the impact of having 5/49 (10.2%) showing <30% would have a
disproportional impact compared to the National CF Database (CF Trust, 2000)
population with a population of 2,394.
125

Body Mass Index
35
30
Percentage
25
CF Database
20
Study group
15
10
5
0
14
32
16
18
20
22
24
26
28
30
BMI
Fig. 4. 15. Distribution of BMI in the study group and the National CF Database
The distribution of BMI indices for the study population produced values marginally
lower than those in the National CF Database (CF Trust, 2000) population (Fig. 4.
15), but not significantly so (Fisher’s Exact test, P = 0.1142) thereby enabling the
results toe generalisable.
It was decided that the BMI would not be repeated at the end of the six month study
period as the study period was too short to be able to use the BMI as a measure of the
affect of the BMI on the ability of the SMPP to improve adherence. Also the impact
of the SMPP had yet to be established and the duration of the study period to evaluate
any impact of BMI on adherence was to short.
126

Age
The mean (SD) of age in the study population was 25.3 (8.3) years with a range 17 –
53 years. The corresponding figures for males and females were 26.5 (9.3) with a
range of 18 – 53 years and 24.4 (7.6) years with a range of 17 – 48 years.
Percentage (%)
40
30
20
CF Database
10
Study Group
0
15  19
20  24
25  29
30  34
35 +
Age (years)
Fig 4. 16. Age profile of the study group and the National CF Database
The distribution of age in the study group was not significantly different to that found
in the National CF Database (CF Trust, 2000) population (Fisher Exact P = 0.1207).
Summary of the analysis of the study population and the National CF Database ion
There was no statistically significant difference between the study population and the
National CF Database with regards to age and BMI. The study population did,
however, contain significantly more individuals with an FEV1 below 50% compared
to the National CF Database population. As FEV1 is used as a predictor of life
expectancy (Aurora et al., 2000) it could be said that the study group was less healthy
than the database population. However in small studies (n = 49) large differences
between sub-groups may be clinically significant but fail to achieve statistical
significance, although trends can be identified.
127

Adherence Related to Gender
Only 36/49 (73.4%) participants answered both Q. 2 (Male or Female) and Q. 24
(How often do you miss a chest physiotherapy session in a week? 1/2/3/4/ if more
please state) enabling the relationship between gender and adherence to be
investigated. For the purposes of analysis, in this instance 36 was considered to be the
total group.
Table 4. 6. Adherence related to gender
Gender
Level of adherence
Total (%)
Male (%)
Female (%)
Non-adherent
7 (58.3%)
11 (45.8%)
18 (50.0%)
Partially adherent
2 (16.7%)
9(37.5%)
11 (31.6%)
Adherent
3 (25.0%)
4 (16.7%)
7 (19.4%)
Total
12 (100%)
24 (100%)
36 (100%)
The data provided no evidence of any significant association between gender and
level of adherence (Fisher’s Exact test, p = 0.519).
128

Adherence Related to Perceived Disease Severity
Only 36/49 (73.4%) participants answered Q. 8 (Do you think you have CF? very
mildly/mildly/moderately/moderately-sever/severe) and Q. 24 (How often do you
miss a chest physiotherapy session in a week? 1/2/3/4/ if more please state) enabling a
relationship between adherence and perceived disease severity to be investigated.
Therefore, for the purposes of analysis 36 was considered to be the total group. It
would appear that those participants who perceived their condition to be moderate or
severe were more inclined to adhere to treatment.
20
Number of participants
18
16
14
12
Complete
10
Partial
8
None
6
4
2
0
1
2
3
4
Perceived disease severity (1-4)
Fig. 4. 17. Adherence and its correlation to perceived disease severity
As can be seen in the graph above, there is a moderate association between level of
adherence and perceived disease severity. (Spearman’s Rank Correlation = 0.471, p =
0.004).
129

Adherence Related to its Perceived Importance
Of the 36/49 (73.4%) respondents who answered Q. 12 (How much do you agree or
disagree with the following statement: “Doing chest physiotherapy is important to my
feeling of well being,” 20/49 (56%) consider that chest physiotherapy was an
important determinant of their well-being. Moreover, adherence increased with the
level of perceived importance of physiotherapy (Spearman’s Rank Correlation = 0.48,
p = 0.003). In this instance the total group is considered to be 36.
Number of participants
12
10
8
Complete
6
Partial
None
4
2
0
1
2
3
4
5
Agreement adherence
Fig. 4. 18. Adherence to physiotherapy and its perceived importance
130

Perceptions of Disease Severity in Relation to FEV1
In the study group there was a significant negative association between perceived
disease severity and FEV1 (rs =  0.579, p < 0.001). (Fig. 4.19).
100
80
FEV1
60
40
20
0
0.0
1.0
2.0
3.0
4.0
5.0
Perceived Disease Severity
Fig. 4. 19. Perceptions of disease severity in relation to FEV1
The significant negative association between perceived disease severity and FEV1
(Fig. 4. 19.) demonstrates that the participants had a realistic view of their disease
severity, with those having a lower FEV1 correctly perceiving their disease to be more
severe. This result indicates that participants should be inclined to access appropriate
treatment when needed. Interestingly, 5/49 (10.2%) participants whose FEV1’s fell in
the severe category (< 30%) did not perceive their condition to be severe. Of these
five participants four died before the study was completed.
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4. 7. 3. Reasons given for adherence behaviours
Questions 21 - 25, 27 – 30, 33 – 7, and 45 – 47 focused on adherence to physiotherapy
and its importance. The answers to these questions were scored for ease of analysis
(Appendix P) using Likert scales, or coded if they were open questions. The data was
analysed and the findings presented in the three categories of adherence, partial
adherence and non- adherence as described in Section Chapter1, p. 17.
1. Reasons given forbeing adherent




23/49 (46%) took ownership/responsibility of their physiotherapy treatment as
they considered it to be their personal responsibility to maintain or improve
their well-being
32/49 (65.3%) considered physiotherapy to be effective in clearing their chest
30/49 (61.2%) participants considered that it was effective in maintaining a
clear chest
11/49 (22.4%) participants had help with their treatment which gave them
positive support
If physiotherapy is perceived as being effective then the participants will do it because
it is of benefit to them.
2. Partial Adherence
As total adherence is unrealistic all participants at some time would be partially
adherent. Reasons given for partial adherence were



A clear chest therefore physiotherapy was not needed
Physiotherapy was not perceived as being effective in clearing their chests
Treatment made no discernable difference.
It is a significant clinical finding that some participants felt no better at the end of
their physiotherapy treatment as this perceived ineffectiveness would affect their
ability to adhere to physiotherapy treatment.
3. Reasons for Non-Adherence/Missing Treatment
Lack of Time

20/49 (40.8%) participants reported that lack of time. This was particularly
relevant to the case of participant 29 who had two young children to look
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after. Two other mothers, participants 9 and 49, hardly did any physiotherapy
due to the demands of caring for two young children each. Treatment time
needs to be as short and as effective as possible in order to encourage
adherence.
Clear Chest

29/49 (59%) missed a treatment or did not do it because they considered their
chests to be clear.
For adults who have minimal respiratory symptoms the recommendation (ACPCF/CF
Trust, 2002; 2011) is that they use their preferred ACT to check that their chest is
clear, or if it has minimal secretions, in which case exercise or an activity is
encouraged to keep as fit and as healthy as possible. Participant No. 3 stated that he
did exercise as it kept his chest clear. Studies have shown (Bradley & Moran, 2011;
Bilton, et al., 1992; Salh et al., 1989) that exercise contributes to keeping the chest
clear but it is a contentious issue. Exercise/activity, which is encouraged by the
government in the general population (DoH, 2006a), is a sociable activity and
facilitates adherence to treatment.
Boring

4/49 (8.1%) participants found daily physiotherapy to be “boring” which
therefore compromised their ability to adhere to treatment.
Carr et al. (1996) in their study recorded similar replies. The chest physiotherapy
technique most frequently used was the active cycle of breathing technique (ACBT)
40/49 (80.16%), while 3/49 (6.1%) participants did Positive Expiratory Pressure
(PEP). The ACBT had been taught to all participants in the group, with the option to
learn another technique if they wanted to do so or if they did not consider ACBT to be
effective for them. Airway clearance should be carried out at least once a day even if
it is to check that their chests are clear. Physiotherapy is a repetitive procedure and it
is understandable that the participants find it boring.
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4. 8. Summary of the study group and findings from the Pre-Intervention
Physiotherapy Questionnaire
The study group appeared to be less healthy than the National CF Database
population, as the study population had lower FEV1s. This may be accounted for by
the fact that 5/49 (10.2%) of the study group had FEV1 < 30% which demonstrated
that in a small study population (n = 49) it was possible for a small number to have a
disproportionate impact. There was no statistically significant difference in BMI or
age between the study group and the National CF Database population.
There was a moderate association between increased adherence and poorer health.
However, four participants in the more severe range (FEV1 <30%) did not perceive
themselves to be severe. This is disconcerting as these participants may not contact
the Adult CF Specialist Centre when unwell nor adhere to treatment, if they do not
perceive the need to do so. Establishing the participant’s health beliefs is essential if
the ability to adhere to physiotherapy treatment is to be optimised.
Lack of time was frequently given as a reason for not doing physiotherapy, therefore
emphasis needs to be placed on personal preference for choice of ACT and for
planning treatment so that it fits into a busy life style and with other CF treatment
regimens. The efficacy of physiotherapy treatment needs to be proven. No statistically
demonstrable association was found here between gender and adherence to chest
physiotherapy.
The above factors were taken into account when developing the educational strategy
(the SMPP) whose aim was to optimise the ability to adhere to physiotherapy
treatment. The development of the innovation will be discussed in Chapter 5 – The
Self-Management Physiotherapy Programme (SMPP).
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CHAPTER 5 – INTERVENTION/ACTION – THE SMPP AND THE POSTINTERVETNION PHYSIOTHERAPY QUESTIONNAIRE
5. 0. Introduction
The development and implementation of the Self-Management Physiotherapy
Programme (SMPP) fulfils the third aim of the study ‘to develop and test the
effectiveness of the SMPP’. When implementing the SMPP the researcher/
physiotherapist functioned as facilitator, with a humanistic approach to patient
education, in keeping with a psycho-social model of care, rather than in the traditional
role of being the ‘expert’ with the participants passively accepting advice. By
empowering the participant through partnership working it was intended that the
participant would have greater ‘ownership’ of their healthcare and as a result
potentially increase their ability to adhere to physiotherapy treatment.
It was decided that the intervention period would be limited to six months because it
was important to evaluate the effectiveness of the SMPP in case it was having a
detrimental effect on the ability to adhere to physiotherapy and because CF is a life
threatening disease the participants’ health could deteriorate as an inevitable part of
disease progression making it difficult to extrapolate whether deterioration was
attributable to disease progression or the impact of the SMPP. A three month follow
after the start of the SMPP was carried out so that the progress of the SMPP could be
monitored and it coincided with the CF Trust recommended follow up at the time of
the study, and as it coincided with the CF Trust’s guidelines (CF Trust, 2002) for
routine follow up at the time of the study. Time frames of three months and six
months were adhered too so that all the participants were using the SMPP for the
same length of time.
The SMPP was designed as a simple framework of what the participants needed to do
when they were in a stable state in order to maintain their health, e.g. their pre and
post physiotherapy treatment medication, their ACT, posture correction, hamstring
stretches and mobilising exercises for the spine and chest, in addition to
exercise/activity.
How the SMPP and the Post-Intervention Physiotherapy Questionnaire were
developed and implemented is outlined below.
135
5. 1. Designing the SMPP
The findings (themes) from the two sets of semi-structured interviews and the results
from the Pre-Intervention Physiotherapy Questionnaire were used to inform the
design of the SMPP, which was to be individually tailored for each study participant.
Fig. 5. 1. shows the sections selected to be covered and the design of the form. The
SMPP was simple in design and presentation, inexpensive and easily adapted for
individual use so that it was as inconspicuous as possible in order to appear to be part
of a routine clinic review. This approach was taken in preference to a more
ostentatious design which could induce a Hawthorne effect (Mayo, 1949) where
participants respond to an intervention because they know they are being observed
and as a result compromise the validity of the results. The SMPP took the form of a
signed mutually agreed contract to encourage greater commitment to adhering to
physiotherapy treatment.
136
SELF-MANAGEMENT PHYSIOTHERAPY PROGRAMME
Name
Date
WHAT TO DO WHEN WELL:
Technique:
Frequency
Duration
Postural Drainage Position
Medication Pre-Physiotherapy
1.
2
.
Medication Post-Physiotherapy
2.
2
EXERCISE/ACTIVITY/SPORT
POSTURE CORRECTION
MOBILISING EXERCISES FOR YOUR SPINE
GOALS
1.
2.
3.
4.
WHAT TO DO WHEN FEELING UNWELL

If you have any of the following;
∙
↑ Sputum


↑Wheeze
↑Cough
↓Energy
∙↓Exercise Tolerance
Telephone 0000 000000 and let us know
Increase/modify your physiotherapy by ……………………………………
Fig 5. 1. Physiotherapy Self-Management Programme (SMPP)
137
●
Health Beliefs and the Importance of Physiotherapy Treatment
Prior too completing the SMPP it would be important to identify each participant’s
health beliefs in order to improve their ability to adhere to physiotherapy treatment. If
they had negative health beliefs they were less likely to adhere to physiotherapy
treatment as they would not see it as being beneficial to them. The researcher/
physiotherapist identified each participants’health beliefs by means of sensitive
questioning and prompts and then developed an individually tailored education
programme to address them. The aim would be to increase the participant’s awareness
of the effectiveness of ACT in maintaining a clear chest or in clearing airway
secretions and also to make them aware of the benefits of exercise/activity in
maintaining or improving fitness and also in enhancing airway clearance (Bott et al.,
2009; Bradley & Moran, 2011).

What to do When Well
Having established each participant’s health beliefs and re-enforced the importance of
doing chest physiotherapy and exercise the participants’ ACT of choice was checked
to ensure that they were competent in its use and the frequency and duration of the
ACT jointly agreed. If the participant took medication before and after physiotherapy
their understanding of its use and their competency in administering was checked.

Coping with Having CF - Goals
In keeping with a busy lifestyle participant-centred goals were individually tailored to
ensure that the SMPP was achievable, effective and capable of being maintained.
Careful consideration was needed to be given to goal setting so that participants’
preferences were taken into account as they are influential in adherence behaviours
(Abbott et al., 2009; Daniels et al., 2011).

Denial – How to manage a chest infection/exacerbation
In order to address the issue of denial, which occurs when there is an underestimation
of disease severity with a resultant delay in seeking help, a section on what to do
when unwell was included to act as a prompt to encouraging early intervention. The
clinical signs and symptoms of a chest infection such as increased sputum and
coughing, were identified in the SMPP so that the participant was encouraged to
promptly contact the Adult Specialist CF Clinic team for treatment advice and for
advice regarding increasing/modifying their chest physiotherapy by a specified
138
amount. It was important that participants contacted the clinic as soon as possible so
that chest infections could be treated promptly to prevent further deterioration.
5. 2. Piloting the SMPP
In order to enhance the SMPPs validity, reliability and effectiveness a pilot study was
undertaken to ensure that the SMPP was clearly understood, unambiguous and easy to
use in a busy clinic setting. A pilot study would show that the proposed method was
workable, acceptable to the study participants and manageable (Bond & Gerrish,
2006).
Population and Sample
The original study population (n = 49) was reduced to 37/49 (75.5%) for the reasons
outlined in Table 5. 1.
Table 5. 1. Tracking the study population
TRACKING THE STUDY POPULATION
Implementation of the SMPP
Study Population
Study
Numbers
(n = 49) (100%)
6 failed to return Pre-Intervention Physiotherapy Questionnaire
Population issued with their SMPP
(2 participants moved away; 2 died; 1 declined to be involved in the
SMPP; 1 not contactable)
43 (87.7%)
37 (75.5%)
The SMPP was piloted using an opportunistic sample of 8/49 (16%) participants
selected from the 37/49 (75.5%) remaining study participants. Following discussions
with the statistician this number of participants was considered to be a representative
sample for a pilot study with a small study population (n = 49). The participants were
selected over a period of a week while they were in a stable state during an out-patient
clinic visit or during an in-patient stay. The first eight participants approached agreed
to take part. The purpose of the SMPP was explained to them. They were asked to
read the SMPP and confirm that they understood the questions. Their understanding
was then checked by the researcher/physiotherapist who questioned their responses to
ensure they fully understood the content.
All the participants in the pilot study commented that the SMPP was clear and concise
and following a few minor alterations the SMPP was finalised and implemented.
139
5. 3. Implementing the SMPP
Administration of the SMPP
Of the 37/49 (75.5%) participants who remained in the study 26/49 (53.0)%) were
approached face to face by the researcher/physiotherapist when they were in a stable
state and all agreed to use the SMPP except one participant who declined stating that
she did not wish to be involved with the SMPP as she was doing her own selfmanagement physiotherapy programme. It was explained to these 25/49 (51.0%)
participants, who agreed to use the SMPP, that its aim was to improve their ability to
adhere to physiotherapy treatment by working with the researcher/physiotherapist to
design their own individually tailored SMPP. Their ACT preferences would be taken
into account and their physiotherapy goals would be set jointly with the researcher/
physiotherapist so that they were effective, achievable and capable of being
maintained. A section would focus on “what to do when unwell” by identifying the
signs and symptoms of a chest infection at which point they could either modify their
own physiotherapy programme and/or contact the CF Clinic for further advice and
treatment.
The SMPP was a user-friendly intervention which was easily incorporated the routine
three monthly clinic assessment. Its effectiveness was monitored using a Feedback
Chart which recorded the participants comments on whether the SMPP improved their
ability to adhere to physiotherapy. The SMPP focused on the participant’s
physiotherapy needs. It did not incorporate the recording of clinical outcome
measures such as FEV1 and sputum (volume, colour and viscosity) and exercise
tolerance as they were recorded in the physiotherapy notes. Sputum results, chest xray scores, pathology results and pharmacological information were recorded in the
medical notes and used as part of the physiotherapy assessment but only FEV1
readings at the start and finish of the intervention period were used as outcome
measures.
The SMPP was tailored to meet the needs of each participant. During an in-patient
stay, when they were in a stable state, or during and out-patient visit discussions took
place between the participant and the researcher/physiotherapist to established the
following factors which had been identified in the study as being influential in
adherence behaviours:
140




Health beliefs – through careful questioning the participant’s health beliefs
were identified so that any barriers to treatment were highlighted and
addressed. This information was recorded in the physiotherapy notes.
Knowledge and understanding – through careful questioning the participant’s
knowledge and understanding of CF and the need for physiotherapy was
established. Any misconceptions were addressed through patient education.
This information was recorded in the physiotherapy notes
Skills – each participant’s ACT was reviewed to ensure they were doing it
correctly at the beginning of the study period and again if necessary at the
three month and finally at the six month follow up.
Personal preferences for ACTs - at the time of the study the Adult CF
Specialist Clinic was a new development with the majority of patients
transferred from the hospital’s Paediatric Specialist CF Clinic. The ACBT was
the most frequently used ACT as it was taught to all the participants while
they were in the Paediatric CF Specialist Service. Each participant’s ability to
carry out their ACT was checked to ensure that it was appropriate and their
technique was effective. At the time of the study it was decided not to
introduce a new ACT to a participant unless clinically warranted as it would
be difficult to evaluate the effectiveness of the SMPP to improve adherence if
the participant considered the new ACT was unsuitable.

The SMPP had to fit into the participant’s life style and both the researcher/
physiotherapist and the participant had to be confident that the programme
could be maintained taking into account the other CF treatment regimens that
also had to carry out, e.g. nebulisation of medication, nasgo-gastric feeding.
For participants with mild CF (FEV1 > 75%) and minimal secretions an
example of a SMPP would be a session of chest physiotherapy once a day
using their preferred ACT for 15 minutes and a visit to the gym once a week in
addition to general advice of keeping fit and active by walking when ever
possible. For a participant with severe disease (i.e. an FEV1 < 30%) chest
physiotherapy four times a day of 10 – 15 minutes could be recommended,
with an exercise programme comprising of sit to stand five times in a row with
a rest in between each sit to stand and after a further rest, one or two minutes
of marching on the spot twice daily. For a participant with severe disease
oxygen would be required during their physiotherapy programme.
After the three months 11/49 (22.4%) participants still remained to be seen and it was
decided to write to them informing them of the planned implementation of their
SMPP. An explanatory letter was sent with a blank copy of the SMPP outlining its
141
purpose. Introducing the concept of the SMPP in a letter enabled the participant to
have time to think about it. From the researcher/physiotherapist’s perspective it was
an efficient use of time because when the participant was seen at the Adult Specialist
CF Centre the idea of having an SMPP would have already been introduced to them.
By the time the 11/49 (22.4%) participants had received their letter 4/49 (81.6%) had
already visited the clinic and agreed to use it.
All the remaining 7/49 (14.2%) participants who had been sent an explanatory letter
with a blank SMPP were then contacted by telephone and all 7/49 (14.2%) agreed to
use it. The telephone consultation with each participant was easily conducted as all
the participants had previously received the relevant information by post. A
personalised SMPP was designed for each of the 7/49 (14.2%) participants during the
telephone contact and signed by the researcher/physiotherapist. A photocopy of the
signed SMPP was sent to the participant for them to sign and return in a stamped
addressed envelope (SAE) to the Adult Specialist CF Centre where it was placed in
the participant’s physiotherapy notes and a photocopy of it returned to the participant.
All of the participants were informed that if they wished to change their SMPP they
were to contact the researcher/physiotherapist using the telephone number that had
been given to them in their Patient Information Leaflet (Appendix F).
The study population issued with their SMPP is illustrated below:
Table 5. 2. Tracking the study population using the SMPP
Study population issued
with their SMPP
Total Study Population
Participants remaining in the study
Approached face to face (including 4
participants who had been sent a tletter)
Study Pop.
Agreed to use
the SMPP
Declined to use
the SMPP
29/49 (53%)
1/49 (2.04%)
49/49 (100%)
37/49 (75.5%)
Telephoned following no response from
being sent a letter
7/49 (14.2%)
Population using the SMPP
36/49 (73.5%)
Three Monthly Follow Up
The participants were reviewed at three months because monitoring them at regular
intervals would mean that they were more likely to adhere to their physiotherapy
treatment (Abbot et al., 2009; Sawicki et al., 2008) in addition to complying with CF
Trust Standards of Care (2001). The purpose of the three monthly follow up was to
review the participants’ SMPP and make any necessary adjustments and also to
142
evaluating its effectiveness by recording the participants comments in the Feedback
Chart.
By the three month follow up 1/49 (2.0%) participant was not contactable so the
numbers remaining in the study were reduced from 36/49 (73.5%) to 35/49 (71.4%)
(Table 5. 3, p. 146). Of these 35/49 (71.4%) participants 23(46.9%) were reviewed
either as in or out-patients while in a stable state within the three month time period.
The remaining 12/49 (24.9%) who had not been seen by the researcher/
physiotherapist for a variety of reasons were contacted by telephone. All 12/49
(24.9%) participants agreed to continue using the SMPP which was then reviewed and
updated during the telephone contact. The participants views on its effectiveness were
recorded on the Feedback Chart. A copy of their three month SMPP review was sent
to the participant for them to sign and return to the researcher/ physiotherapist copies
of which were placed in the physiotherapy and medial notes.
The Feedback Chart
The Feedback Chart used a simple layout to record the comments made by the
participants on the effectiveness of the SMPP to optimise their ability to adhere to
physiotherapy treatment. The researcher/physiotherapist made notes of the
participants’ comments and recorded them at the three month follow up and again at
the six month follow up which marked the end of the implementation period of the
SMPP. By giving feedback on the effectiveness of the SMPP the participants were
engaged and empowered to contribute to the evaluation of the study and thereby
would potentially be more likely to remain in the study. It was important to review the
participants ACT to ensure it was being carried out effectively and that they felt that it
was effective for them because treatment preferences are influential in adherence
behaviours (Abbott et al., 2009; Daniels, 2010; Pryor et al., 2010). It was also
important to monitor the participants views on the SMPP at an early stage in case it
was hindering their ability to adhere to physiotherapy treatment. If the SMPP had
impeded adherence it would have been withdrawn and the study curtailed. Following
the three month follow up the study population was reviewed again six months after
the implementation of the SMPP.
Six Month (Final) Follow-Up
The six month follow up marked the end of the intervention period. The SMPP was
reviewed and any necessary adjustments to treatment made. The participants’
comments on the effectiveness of the SMPP were recorded by the researcher/
143
physiotherapist on the Feedback Chart. The Post-Intervention Physiotherapy
Questionnaire was issued at the same time as the participant’s SMPP was reviewed.
How the Post-Intervention Physiotherapy Questionnaire was developed is outlined
below. The number of study participants was reduced to 32/49 (65.3%) for a variety
of reason outlined in Table 5. 3.(p. 146). Of the remaining 32/49 (65.3%) participants
24/49(48.9%) were reviewed either as an in-patient or as an out-patient when they
were in a stable state while the remaining 8/49 (16.3%) participants were reviewed by
telephone. Their comments of the SMPP were recorded on the Feedback Chart. In the
course of the study all participants were followed up at least once in person at the
three or six monthly follow up.
5. 4. Issuing the Post-Intervention Physiotherapy Questionnaire
Development of the Post-Intervention Physiotherapy Questionnaire
The purpose of the Post-Intervention Physiotherapy Questionnaire was to act as an
evaluation tool to measure any changes which may have occurred following the
implementation of the SMPP. To measure change it is necessary to have at least two
cross-sectional surveys conducted on the same population (McKenna et al., 2006).
The survey was issued in two stages with the Pre-Intervention Physiotherapy
Questionnaire issued at the beginning of the intervention and the Post-Intervention
Physiotherapy Questionnaire issued at the end of the study. The design of the PostIntervention Physiotherapy Questionnaire was based on that of the Pre-Intervention
Physiotherapy Questionnaire because in order to monitor any changes which may
have occurred as a result of the implementation of the SMPP it was necessary to ask
the same questions again. However, two additional questions were added in order to
help assess the effectiveness of the SMPP to optimise the ability to adhere to
physiotherapy treatment from the participants perspective.


Q. 49 How do you rate the Self-Management Physiotherapy
Programme you have been using?


Q.50 How has the Self-Management Physiotherapy Programme helped
you? Please give an example.
Although the researcher/physiotherapist recorded the participants’ comments on the
effectiveness of the SMPP using the Feedback Chart, it was important to record the
participants’ opinions using their own words by using a different tool, i.e. the PostIntervention Physiotherapy Questionnaire, in order to enhance the reliability and
144
validity of the replies. By giving each participant a written and verbal opportunity to
express their views on the effectiveness of the SMPP a comprehensive assessment
was obtained.
Issuing the Post Intervention Physiotherapy Questionnaire
The Post-Intervention Physiotherapy Questionnaire was issued at the end of the study
period to the remaining 32/49 (65.3%) participants at the same time as the review of
their SMPP took place. Of the 32/49 (65.3%) participants remaining in the study
24/49 (48.9%) were reviewed as part of their routine out-patient clinic assessment
where they were asked to complete the Post-Intervention Physiotherapy Questionnaire
at a time convenient to them and return it in a stamped addressed envelop (SAE)
while the remaining 8/49(16.3%) participants were followed up by telephone. The
Post Intervention Physiotherapy Questionnaire was sent by post with a SAE for them
to return it to the researcher/physiotherapist. The study population during the duration
of the study is outlined below (Table 5. 3., p.146). Of the 32/49 (65.3%) remaining in
the study 29/49 (59.1%) completed it by returning the Post-Intervention
Physiotherapy Questionnaire.
145
Table 5. 3. Tracking the study population
Stages of the Study
Nos.
involved at
each stage
Actioned
by
61
R
Select study population:
Specialist Adult CF Clinic – full care group - total eligible
population
Inclusion and exclusion criteria applied
Recruited to study
+(6 declined)
55
49 (100%)
R
PLAN
First Set Semi-Structured Interviews – Sub-group (n = 3) *
CP
Analysis of First Set of Semi-Structured Interviews
R&CP
Second Set of Semi-Structured Interview - Sub group (n = 5)*
(Interviewees did not comprise of the same participants who were in
the first set of semi-structured interviews )
Analysis of Second Set of Semi-Structured Interviews
CP
R & CP
Pre-Intervention Physiotherapy Questionnaire developed from the
findings (themes) of both semi-structured interviews
R
Pre-Intervention Physiotherapy Questionnaire piloted
Sub-group (n = 12)*
Pre-Intervention Physiotherapy Questionnaire issued to study
population
Pre-Intervention Physiotherapy Questionnaire returned
Pre-Intervention Physiotherapy Questionnaire analysed
R
49 (100%)
R
43 (87.7%)
R
INTERVENTION/ACTION
SMPP designed
SMPP piloted - Sub-group (n = 12)*
Start of Intervention: SMPP issued
+(2 moved away; 2 died; 1 declined to use the SMPP; 2 not
contactable)
3 month Follow-Up
SMPP reviewed and evaluated using Feedback Chart
+(1 not contactable)
Finish: 6 month Follow Up:
SMPP reviewed; Post-Intervention Physiotherapy Questionnaire
issued +(1 went travelling; 2 died)
Post-Intervention Physiotherapy Questionnaire
returned
EVALUATION
Pre & Post Intervention Physiotherapy Questionnaires
Analysed and Feedback Chart evaluated
R
R
36 (73.4%)
R
34 (69.3%)
R
32 (65.3%)
R
29 (59.1%)
REFLECTION
Legend
* Sub-groups were selected from total study population (n = 49)
+ Reasons for the study population reducing
CP = Clinical Psychologist
R = Researcher/Physiotherapist
146
R
The issuing of the Post-Intervention Physiotherapy Questionnaire marked the end of
the intervention period. The analysis of the Post-Intervention Physiotherapy
Questionnaire and the findings from the Feedback Chart are presented in Chapter 6, P.
148.
147
CHAPTER 6 – EVALUATION
The results and analysis are presented below:
6. 0. Introduction
The aim of this chapter was to meet the fourth aim of the study ‘to evaluate the impact
of the new SMPP on adherence to physiotherapy’. The analysis and results of the PreIntervention Physiotherapy Questionnaire compared with the Post-Intervention
Physiotherapy Questionnaire and the findings from the Feedback Chart are presented
below:
6. 1. Results and Findings on Adherence from the Comparison of the Pre and
Post Intervention Physiotherapy Questionnaires
The Post-Intervention Physiotherapy Questionnaire was analysed using Windows
SPPS 10. The data was analysed for each participant and the results compared with
those of the Pre-intervention Physiotherapy Questionnaire so that any changes which
may have occurred as a result of the implementation of the SMPP could be presented.
The statistical tests and p values used in the analysis are described in each example.
Adherence was classified as outlined in Chapter 1 p. 17. Although 29/49 (59.1%)
participants completed the study, for the purposes of analysis some statistical tests
were not able to be performed on the full 29/49 (59.1%) participants as in some
instances insufficient participants answered the required questions to enable an
analysis to be carried out.
Analysis of the Pre and Post-Intervention Physiotherapy Questionnaires revealed an
increased trend in adherence following the introduction of the SMPP.
Adherence was measured using the following evaluation:

Measurement of Adherence
Adherence was measured at the beginning and end of the study period to monitor any
changes in adherence behaviour which may have occurred as a result of the SMPP.
Questions 22, 24, 33 and 34 were used in the Pre and Post Intervention Physiotherapy
questionnaires to assess the participant’s level of adherence at the beginning and end
of the study so that any changes could be recorded.
148
By the participant answering Q. 22, 24, 33 and 34 with a range of possible answers of
0 – 4 or more times a day it was possible to establish if they were adherent, partially
adherent or non–adherent. Adherence is a complex issue and there is no universally
accepted definition for the purpose of physiotherapy, nor any treatment specific
objective outcome measures in CF to monitor adherence behaviour. The researcher/
physiotherapist developed their own definition of adherence for the purpose of the
study (Ch. 1, p. 17). As 100% compliance is unrealistic adjustments were made when
categorising the participant’s level of adherence when responding to the above
questions:
 Adherent – treatment which has been agreed between the researcher/
physiotherapist and the participant and the participant reports that they are


implementing it (with an allowance for missing three or less physiotherapy
sessions a week).
Partial Adherent – treatment which has been agreed between the participant
and the researcher/physiotherapist but the participant reports that they are only
partially implementing it (with an allowance for missing four or more
physiotherapy sessions a week)or did it intermittently and when they were
unwell.
Non-Adherent – treatment which has been agreed between the researcher/
physiotherapist and the participant but the participant reports that they are not
implementing it and participants who are not in agreement with the
physiotherapist over the need for physiotherapy and report that they do not do
any.
Only 21 participants had answered both questions in the Pre and Post Intervention
Physiotherapy Questionnaire enabling the impact of the SMPP on their ability to
adhere to physiotherapy treatment to be evaluated. When making recommendations
for chest physiotherapy the researcher/physiotherapist would have recommended the
frequency and duration of daily treatment following assessment of the participant’s
clinical needs and having discussed their programme with them so that the
recommendations were jointly set.
The results are presented in three ways
 Table 6. 1. shows the overall changes in adherence before and after the
implementation of the SMPP
 Fig 6. 1. presents these changes in a bar graph format
 Table 6. 2. presents the same results by means of identifying each participant’s
change in level of adherence.
149
Table 6. 1. Change in adherence attributable to the implementation of the SMPP
After
Before
Total
Adherent
Partially
Non
Adherent
9
3
0
12
Partially
3
3
0
6
Non
2
1
0
3
Tota
14
7
0
21
Based upon the data presented above the observed change in level of adherence was
not statistically significant (McNemar’s test, p = 0.505). However, the numbers were
small and although it would not be possible to draw a statistically significant
conclusion it is evident that overall adherence to physiotherapy treatment in the study
group increased. The trend in increased adherence is also reflected in the positive
comments made by the participants in the Feedback Chart and in the Post-Intervention
Physiotherapy Questionnaire. The results are further illustrated in the bar graph in Fig
6. 1.
Number of Pparticipants
14
12
10
8
Before
6
After
4
2
0
Adherent
Partially
Non
Adherence to physiotherapy
Fig. 6. 1. Change in adherence before and after the implementation of the SMPP
The results show the changes in behaviour before and after the implementation of the
SMPP. The following changes took place:
150



Increase in adherence: for 3/49 (6.1%) participants their level of adherence
increased from being partially adherent to being fully adherent;. for 2/49
(4.08%) participants their level of adherence increased from being nonadherent to being fully adherent and 1/49 (2.04%) non-adherent participant
became partially adherent
No change in adherence: 9 participants remained adherent before and after
the implementation of the SMPP while 3 remained partially adherent
Reduced adherence: for 3/49 participants their level of adherence dropped
from being adherent before to being partially adherent
Overall for six participants (12.29%) the trend was for adherence to increase, for
12/49 (24.48%) participants it remained unchanged and for 3/49 participants it
reduced.
These results are presented again in Table 6. 2., p. 152 which demonstrates the
change in each participant’s level of adherence following the implementation of the
SMPP.
151

Individual participant’s level of adherence before and after the
implementation of the SMPP
Table 6. 2. Adherence measured before and after using the SMPP
Participant
ACT*
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
25
26
27
28
29
30
31
32
33
34
35
36
37
38
39
40
41
42
43
44
45
46
47
48
49
ACBT
ACBT
ACBT
ACBT
ACBT/PEP
ACBT
X
ACBT
NONE
ACBT
ACBT
ACBT
NONE
FLUTTER
ACBT
ACBT
ACBT
NONE
FLUTTER
ACBT
ACBT
PEP
ACBT
ACBT
ACBT
NONE
ACBT/PEP
ACBT
PEP/FLUTTER
DB&C
ACBT
X
ACBT
ACBT
DB&C
X
AD
DB&C
NONE
PEP
DB&C
NONE
DB&C
X
X
ACBT
AD
X
PEP
Level of Adherence
Start**
P/A
A
No A
P/A
N/A
X
A
No A
A
A
A
P/A
P/A
No A
A
N/A
A
A
A
P/A
P/A
A
A
No A
A
A
P/A
N/A
P/A
X
P/A
P/A
No A
X
No -N/A
No A
No A
A
N/A
No A
N/A
X
X
A
A
X
P/A
152
Level of Adherence
End**
No A
P/A
No A
A
P/A
X
A
P/A
A
P/A
P/A
A
P/A
A
A
A
No A
A
P/A
P/A
A
X
.
A
X
A
No A
A
A
N/A
X
X
A
A
X
A
Outcome
Down
Up
=
Down
=
=
=
=
Up
=
=
=
Down
=
Up
Up
=
Up
=
=
Up
Legend
*Airway Clearance Technique (self-reported) in the total study population







22/49 (44.9%) ACBT (Active Cycle of Breathing Technique)
3/49 (6.12%) PEP (Positive Expiratory Pressure)
2/49 (4.08%) AD (Autogenic Drainage)
2/49 (4.08%) F (Flutter)
5/49 ( 10.2%) D B & C (Deep Breathing & Coughing)
2/49 (4.08%) ACBT/PEP
1/49 (2.0%) PEP/F


6/49 (12.2%) NONE -Did not do any physiotherapy
6/49 (12.2%) X – Consented to be in the study but did not complete the PreIntervention Physiotherapy Questionnaire
** Level of Adherence
 A – Adherent (agreed to do physiotherapy and either complied fully or missed
3 or less sessions a week)

PA – Partially Adherent (agreed t odo physiotherapy but missed 4 or more
physiotherapy sessions in a week or did physiotherapy on an irregular basis or
when unwell)

NA – Non Adherent (either agreed to do physiotherapy and did no td oit or did
not do any physiotherapy at all)
***Replies
 X – Consented to take part but did not return the questionnaires
 No A– All the relevant questions were not answered
 - Did not return questionnaire.
.
153
6. 1. 1. Adherence attributable to use of ACT
The study group predominantly used the ACBT. At the time of the study the adult
clinic had recently started up with the majority of participants progressing from the
Paediatric Specialist CF Clinic where the ACT most frequently taught was the ACBT.
Because of the small numbers of participants who used an ACT other than the ACBT
it was not possible to investigate relationships between each of these different ACTs
and adherence behaviour.
Table 6. 3. ACT used by the participants who completed the study
ACT
Numbers
ACBT
12/21 (57.1%)
PEP
3/2 (14.2%)
AD
1.21(4.7%)
Flutter
1.21(4.7%)
DB & C
2/21 (9.5%)
ACBT/PEP
1/21(4.7%)
PEP/FLUTTER
1/21(4.75)
154
6. 2. Disease Severity Before and After the Implementation of the SMPP
The FEV1 is a universally accepted objective means of measuring lung function which
gives and indication of disease severity (Miller et al., 2005). The table below records
the change in FEV1 for the 29/49 (59.1%) participants who completed the study.
Table 6 . 4. Summary of statistics for FEV1
Fev1
Mean (SD)
Before
After
Change
47.7 (16.5)
43.9 (15.5)
3.8 (10.9)
The observed fall in FEV1 of 3.8% is not statistically significant (t = 1.9, p = 0.066)
although it might be considered a borderline result but a fall of 3.8% is of clinical
concern. However, the study was carried out over the winter months and people with
CF are more prone to chest infections in winter which could account for the fall. In a
small study population a few participants with chest infections would have a
disproportionate impact on the percentage calculation but this would statistically not
be of significance.
It was important to establish if the FEV1 of the participants had fallen as studies
(Abbott et al., 1996; Kettler et al., 2002) have shown that adherence can increase as a
result of anxiety about progressive deterioration. If adherence to chest physiotherapy
had increased it would not be possible to attribute it to the effectiveness of the SMPP
if the FEV1 of the group had fallen significantly (i.e. > 3%) as the increase may have
been due to anxiety. If the SMPP had remained the same or had fallen slightly but
within expected parameters for a six month time frame then an increased level of
adherence could possibly be attributed to the SMPP. The fall of 3.8% in this study is
slightly greater than a 2.5% fall which would be in keeping with the expected fall for
adults in this age group at the time that the study was undertaken (Que, Cullin, &
Geddes, 2006). If the result of the study demonstrated that adherence had increased
and the FEV1 had not fallen significantly then it would be possible to attribute the
increase in adherence to the effectiveness of the SMPP. Without measuring the FEV1
it would impossible to evaluate the effectiveness or other wise of the SMPP to
improve adherence to physiotherapy treatment.
CF is a life limiting disease and a deterioration of -3.8 in the course of a year would
be expected in this age cohort (Que, Cullinan, & Geddes, 2006). Therefore a fall of
3.8% in this study was not too significant considering the this time of year. It can be
155
considered that for those who completed the study they were in a relatively stable
state. This result could also be interpreted that the deterioration could be due to the
intervention of the SMPP however, as CF is a multi-system life limiting disease
involving complex treatment, such an opinion would preclude this as the sole
interpretation.
Health care professionals have to understand that people make choices and the
decision not to adhere to treatment for what ever reason has to be accepted providing
it is not based on inaccurate information or a false perceptions (Nunes et al., 2009).
156
6. 3. Change in FEV1 in Relation to Levels of Adherence
Table 6. 5. Changes in FEV1 by levels of adherence
Level of Adherence
Change in FEV1
Mean (SD)
Adherent
( n = 12)
6.3 (12.9)
Partially Adherent
(n = 7)
-3.6 (7.5)
Non Adherent
( n = 3)
7.3 (13.4)
As discussed in 6.1 in order for the level of adherence to be classified the participants
had to answer both Q. 22 and Q. 34 of the Pre and Post-Intervention Physiotherapy
Questionnaires. Of the 29/49 (59.1%) participants who completed both sets of
questionnaires only 21/49 (42.8%) answered both these questions leaving 8/49
(16.3%) participants whose level of adherence could not be classified and the impact
of the SMPP on their ability to adhere to physiotherapy treatment unaccounted for.
There was no evidence of any statistically significant difference with regard to change
in FEV1 between the participants in the three groups (analysis of variance, p = 0.214),
suggesting that the study group had remained statistically stable in relation to their
level of disease severity. Relating this to the levels of adherence the results indicate
that during the study period the level of disease severity did not influence the
participant’s level of adherence. The statistical analysis does not take into account the
four participants who died.








157
Adherence Related to Perceived Disease Severity
The participants’ perceived level of disease severity was self-reported by answering
the multiple choice question Q. 11 “Over the past month how has your health been? 1.
Very Good; 2. Good; 3. unwell; 4. very unwell?”
Statistical analysis using the Spearman’s Rank Correlation showed a value of r =
0.135 (p = 0.528) indicating no association between these two variables. This result
demonstrates that adherence was not related to anxiety regarding the participants’
perception of their disease severity.
158
6. 5. The Findings from the Feedback Chart and the Post-Intervention
Physiotherapy Questionnaire on the Effectiveness of the SMPP
Feedback Chart
The effectiveness of the SMPP to optimise the ability to adhere to physiotherapy
treatment was reviewed at the three and six monthly follow ups using the Feedback
Chart to monitor the participants’ comments. The 29/49 (59.1%) participants who
completed the study made the following comments
Table 6. 6. Comments on the effectiveness of the SMPP.
Feedback Chart Comments
Numbers
Excellent
2/49 (4.1%)
Very good
18/49 (36.7%)
Good
5/49 (10.2%)
No comment
1/49 (2.0%)
Negative comment
3/49 (6.0%)
Of the total study population (n = 49) 25/49(50.1%) made positive comments on the
effectiveness of the SMPP. Examples of the comments are outlined below in Table 6.
6.
Table 6 . 7. Comments on the effectiveness of the SMPP
Negative
Positive
● It did not make any difference I was doing
it anyway.
● I don’t really do physio unless I am ill so it
didn’t alter my approach.
● It helps to jointly set goals.
● It was helpful to have it written down.
Although there was a significant difference in the verbal responses from the
participants regarding the effectiveness of the SMPP it was predominately perceived
as being a contributing factor in optimising the ability to adhere to physiotherapy
treatment.
159
Post-Intervention Physiotherapy Questionnaire – Comments on the SMPP
The participants positive comments on the effectiveness of the SMPP as recorded in
the Feedback Chart were augmented by the replies given in response to Q. 50 (How
has the self-management programme helped you?) in the Post-Intervention
Physiotherapy Questionnaire. Of the 29/49 (59.1%) who completed the study by
returning their Post-Intervention Physiotherapy Questionnaire 20/49 (40.8%)
commented positively about the SMPP while 5/49 (17.2%) participants did not
comment, 3/49 (10.3%) gave unequivocal answers and 1/49 (2.04%) considered that
they were unable to use the SMPP due to ill health.. Examples of the comments are
presented in Fig. 6. 2.
Positive Comments on the SMPP




It inspired me to do more
You feel that you are helping yourself
I felt more committed
It was a boost to see it written down and to know
that the physio was checking
Fig 6. 2. Positive comments on the SMPP
These subjective comments gave valuable insights into how effective the participants
considered the SMPP to be. It could be argued that these participants thought
positively about the intervention and therefore they completed the study when they
could have dropped out.
Summary
The group of 29/49 participants who completed the study represents 59.1% of the
total study population (n = 49) and therefore gave valid insights into the effectiveness
of the SMPP. The positive comments received from the participants in the PostIntervention Physiotherapy Questionnaire acted as a form of triangulation when
compared with the positive comments from the Feedback Chart.
The discussion and implications of how the SMPP appeared to help improve
adherence to physiotherapy and how effectively the research aims were met is
presented in Chapter 7.
160
CHAPTER 7 – REFLECTION







The reflection on the research process and its outcomes are presented as
follows;
Discussion
Conclusions
Recommendations for Clinical Practice
Recommendations for Future Research
Limitations
Reflection
7. 0. Discussion
The impact of the SMPP is discussed as follows:
7. 1. The Impact of the SMPP
This is a unique clinically-based exploratory study that used a mixed methodology to
investigate the many complex issues in the specialist field of adherence to
physiotherapy in CF. To date no studies have been undertaken to investigate the
effectiveness of an SMPP to improve the ability to adhere to physiotherapy treatment
for adults with CF. The purpose of the study was to investigate the problems adults
with CF have in adhering to physiotherapy treatment by establishing, from their
perspective, what these problems are and developing an educational strategy in the
form of a SMPP to potentially improve their ability to adhere to physiotherapy
treatment.
The study demonstrated a trend in increased adherence to physiotherapy treatment
which can potentially lead to improved health outcomes such as reducing the rate of
respiratory decline, the need for hospitalisation and the frequency and duration of
physiotherapy treatment time. These improved outcomes can also contribute to a
reduction in healthcare and pharmalogical costs in addition to a reduced dependency
on social benefits as people with CF become healthier and consequently more
employable. All of these factors can potentially contribute to an increased life
expectancy and a better QoL.
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7. 1. 1. Increased Trend in Adherence to Physiotherapy Treatment
The study demonstrated that following the implementation of the SMPP there was an
increased trend in adherence to physiotherapy treatment. For the 21/49 (42.8%)
participants who completed the study and answered the relevant questions (Q. 22, Q.
24, Q. 33, and Q. 34 ) enabling their level of adherence to be measured, adherence had
increased for six as 3/49 (6.15%) partially adherent participants became adherent and
non-adherence had reduced from 3/49 (6.15%) participants to nil. This trend, although
not statistically significant, indicates that the SMPP was likely to have been effective
in optimising the participants’ ability to adhere to physiotherapy treatment and in
doing so answered the research question “Will the newly developed SMPP optimise
the ability of adults with CF to adhere to physiotherapy treatment?” This outcome was
supported by the participants’ positive comments about the SMPP in the Feedback
Chart and in the Post-Intervention Physiotherapy Questionnaire.
Analysis of the Post-Intervention Physiotherapy Questionnaire indicated that this
trend in increased adherence was not related to disease severity (Table 6. 3. p. 154) as
there was no association between the participants’ perception of their disease severity
and their level of adherence to physiotherapy (Ch. 6. 5, p.157). This outcome suggests
that anxiety about their disease severity was not the cause of an increase in adherence.
Also, over the six month study period, which was conducted during the winter months
when there is an increased prevalence of chest infections, the participants’ lung
function had remained stable with a fall of only 3.8%, indicating that anxiety about
their condition was unlikely to have induced the increase in adherence. Other studies
(Abbott et al., 1996; Kettler et al., 2002) show conflicting findings. Abbott et al.
(1996) in their study on health perceptions and adherence to treatment concluded that
anxiety regarding disease severity did increase adherence, while Llorente et al. (2008)
found in their study that an increase in disease severity corresponded with a reduction
in adherence to treatment.
A reduction in adherence may be accounted for by the fact that if the level of disease
severity becomes too great for some individuals to cope with they may avoid
perceptions and behaviours which compel them to acknowledge the seriousness of the
situation (Abbott et al., 1996). A reduction in adherence to physiotherapy treatment
can also occur with disease severity when no clinical benefit is detectable following
treatment (Kettler et al., 2002). In this study the trend in increased adherence did not
appear to be due to the participants worrying that their condition had deteriorated and
correspondingly increasing their level of adherence, but was more probably due to the
SMPP optimising their ability to adhere to physiotherapy treatment.
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To date there have been no studies conducted into adherence to physiotherapy in CF
using a SMPP so it is not possible to compare the results with other similar studies, as
to date there have been no studies conducted into adherence to physiotherapy in CF
using a SMPP. However self-management programmes have been successfully
developed for use in other chronic respiratory diseases such as chronic obstructive
pulmonary disease (COPD) (Effing et al., 2007) and asthma (Powell & Gibson, 2003)
where they have proved to be effective.
An SMPP is an effective means of addressing barriers to adherence as a persons
health beliefs, knowledge and skills need to be identified prior to using a SMPP and
an individually tailored education programme put in place to address them. For those
with negative health beliefs and the perception that physiotherapy was ineffective,
educating them about the benefits of physiotherapy and how it can be used as a means
of controlling their disease can contribute to removing barriers to adherence.
A successful self-management programme requires regular reviews (Sawyer & Aroni,
2005) and good communication in order to improve the necessary knowledge and
skills to bring about positive behavioural changes (Nunes et al., 2009). Over the six
month study period the participants were followed up at three months and again
finally at six months in order to re-enforce the implementation of the negotiated
agreed goals.
7. 1 2. Health Beliefs, Perceptions of Having CF and Perceptions of Disease
Severity
The importance of health beliefs in adherence to physiotherapy were first identified
by Carr et al. (1996) who stated that to facilitate adherence to physiotherapy treatment
health beliefs and perceptions of the effectiveness of physiotherapy need to be
identified and a treatment programme designed to address them. This finding has also
been noted in other studies (Abbott et al., 2009; 2001; 1996; Bucks et al, 2009;
Daneils, 2010; Kettler et al., 2002; Myers & Horn, 2006; White et al., 2007). It is
possible that as the disease gradually progresses and QoL deteriorates (Badlan, 2006),
accommodation is made so that the true level of disease severity is not accurately
perceived and therefore appropriate treatment is not adhered too.
In this study there was a significant negative association between perceived disease
severity and FEV1 (Fig. 4. 19, P. 131) demonstrating that the participants had a
realistic view of the level of their disease severity and therefore should access
appropriate treatment when needed. Other studies have shown this not to be the case
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(Abbott et al, 1996; Dodd & Webb, 2000) and have commented that people with CF
are more inclined to underestimate the significance of their disease severity thus
making it potentially less likely that they would seek medical help or implement the
necessary treatment.
The outcome of no association between perceived level of disease severity and the
level of adherence following analysis of the Post-Intervention Physiotherapy
Questionnaire (Ch. 6. 4, p. 158) is different to that indicated following analysis of the
Pre-Intervention Physiotherapy Questionnaire (Fig. 4. 19, p. 131) where it appeared
that those participants who perceived their condition to be moderate or severe were
more inclined to adhere to treatment. However, four severely ill participants died
during the course of the study period and the difference in the outcomes between the
beginning and end of the study period could indicate that at the end of the intervention
period, the remaining group of participants were in a better state of health and
potentially less worried about their disease. This result could also be said to support
the view that the trend in increased adherence was due to the effectiveness of the
SMPP and not due to the participants being anxious about their condition and
consequentially increasing their adherence to physiotherapy treatment. Abbott et, al.
(1996) and Myers and Horn (2006) demonstrated that a positive attitude and an
optimistic yet realistic view of having CF resulted in greater adherence to treatment
because treatment was perceived to be important and beneficial in reducing the impact
of having CF.
In this study positive health beliefs together with a strong internal locus of control,
developed through a humanistic approach to patient education, empowered the
participants to work in partnership with the professional to design their SMPP. This
psycho-social approach to the management of chronic disease challenges the
traditional model of a medically dominated care pathway where the patient is in a
passive/dependent position.
7. 1. 3. The efficacy of physiotherapy and adherence to treatment
The effectiveness of chest physiotherapy was questioned by several participants
indicating that the participants either needed to feel clinically better following a
treatment or they need to believe that chest physiotherapy was important even if they
did not feel clinically better following treatment. Studies have demonstrated (Abbott
et al., 2009; Nunes et al., 2009) that if a treatment is perceived as being of benefit then
it is more likely to be adhered too. However, health care professionals have to
understand that people make choices and the decision not to adhere to treatment for
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what ever reason has to be accepted, providing it is not based on inaccurate
information or a false perceptions (Nunes et al., 2009). For example one non-adherent
participant (No. 43) strongly agreed that physiotherapy was important but failed to
comply with the two sessions a day recommended by the CF researcher/
physiotherapist and only carried out physiotherapy twice a week. It is relevant to point
out that this female participant had two young children and found adhering to
treatment problematical. The effect of the responsibility of having children on a
participant’s ability to adhere to physiotherapy has yet to be explored as few people
with CF have children. The direct relationship between increased adherence and the
perceived importance of physiotherapy (Fig 4. 18, p. 130) is significant as these
participants would have presumably thought that physiotherapy is beneficial to their
well being. The participants who disagreed with the concept of physiotherapy being
important to their well being were in the partial and non-adherent groups and may
have considered physiotherapy to be ineffective or unnecessary.
There was a significant range in the reasons for non-adherence of physiotherapy
ACTs with some study participants perceiving physiotherapy to be “boring” and “time
consuming” and its clinical benefits unclear (“it doesn’t make any difference”) while
others considered that “without it I would not be so well”. Studies (Abbott et al.,
2009; Daniels, 2010; Kettler et al., 2002) suggest that participants may not adhere to
physiotherapy treatment if they do not feel clinically better for doing it, or experience
no detrimental effects for failing to do a treatment, or are unaware of the
consequences of non-adherence. These findings can be interpreted as a perception that
chest physiotherapy is only effective if sputum is produced, therefore if little or no
sputum is produced then either it is not needed or it is not effective (Huyard, 2008).
At the time of the study the CF Trust’s guidelines for physiotherapy clinical practice
(ACPCF/CF Trust, 2002) had been published, supporting the use of ACTs for chest
physiotherapy but acknowledging that the evidence was poor. A Cochrane Review
(van der Schans, Prasad & Main, 2000) investigated chest physiotherapy compared to
no chest physiotherapy and came to the conclusion that ACTs had a short term effect
in facilitating mucus transport but the supporting evidence lacked reliability and
validity. Although these findings were incorporated into the clinical practice of the
researcher/physiotherapist, the evidence base to support ACTs was limited which may
have influenced the participants’ level of adherence. If there was inconclusive
evidence to support the use of ACTs they may have been perceived as not being
necessary/effective which would be a barrier to adherence. Physiotherapy can be time
consuming and when complex treatment programmes involving several components
need to be carried out people with CF make decisions as to which is the most
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beneficial in the time they have available for treatment. Health care professionals
should be aware that a degree of non-adherence is acceptable if people living with CF
are to maintain a sense of normality in their lives (Badlan, 2006; Daniels et al., 2011;
Daniels, 2010; Nunes et al., 2009).
Studies into the efficacy of physiotherapy are difficult to evaluate due to the inability
to conduct randomised controlled trials because the withdrawal of treatment would be
unethical and placebo treatment impossible to implement. To have a control group
with one arm not having physiotherapy treatment would require careful ethical
consideration as physiotherapy is a recommended treatment modality for CF (Bott et
al., 2009; ACPCF/CF Trust, 2011). Frequently physiotherapy studies on ACTs are
short term and do not account for changes in adherence over a period of time. As there
is no objective outcome measure for physiotherapy treatment, studies rely on the
honesty and recall of the participants, which can be unreliable and the accuracy with
which the physiotherapy treatment is uncertain.
In recent years substantial work, including five Cochrane Reviews (Elkins et al.,
2009; Main et al., 2009; Morrison & Agnew, 2009; Robinson et al., 2010; van der
Schans et al., 2009) and one long term study (Pryor et al., 2010) have contributed
significantly to the knowledge regarding the efficacy of ACTs. These studies give
greater credence to recommending ACTs which is reassuring for people with CF and
can contribute to improving adherence to physiotherapy. People with CF need to be
informed of the evidence that supports clinical practice and the positive benefits that
good airway clearance can bring to their health outcomes such as reduced
hospitalisation and improved QoL. Whether this improved efficacy would have
contributed to an increase in adherence to physiotherapy treatment in this study is a
debatable point.
7. 1. 4. Gender and Adherence
The study demonstrated that there was a trend for the female participants to be less
adherent than the males (Table 4. 6., p.128) but this was not statistically significant
due to the small number involved as only 12/49 (20.4%) males and 24/49 (48.9%)
females answered both Q. 2, which established their gender and Q. 22, 24, 33 and 34
which self-reported their level of adherence to physiotherapy treatment. This result is
a similar to another study by Willis et al. (2001) who demonstrated that young women
were less adherent to physiotherapy than young men. Their study however was based
upon a much younger population of 16 – 20 year olds. It would be advantageous to
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follow the cohort in the Willis et al. (2001) study to establish whether their level of
adherence to physiotherapy changed as they grew older.
There are gender differences in CF, with females having a poorer prognosis than
males (CF Trust, 2011b; Myers & Horn, 2006; Sawyer et al., 1995). Studies (Myers &
Horn, 2006; White et al., 2007) into adherence to physiotherapy identify the ratio of
males to females in the study population but do not extrapolate any differentials in
adherence rates between the two groups. In this study the FEV1 of the study group
remained fairly stable for the population who completed the study (Table 6. 4, p. 155).
There was also no statistical difference in the level of adherence (Fisher’s Exact test p
= 0.0519, Table 4. 6. p. 126) between the males and the females, consequently the
greater adherence to treatment by females may be due to gender rather than anxiety
about the severity of their disease. Gender differences identified in this study warrant
further investigation as to date there is little research carried out into this aspect of
adherence to physiotherapy treatment. An appropriately powered study may show a
significant effect.
7. 1. 5. Exercise and Airway Clearance
In this study exercise was one of the components of the SMPP, with every participant
having an exercise goal e.g. to go to the gym once a week and carry out their exercise
programme. Exercise provides a means of “peer identification” as exercise is not just
a treatment modality for CF, it is an activity that is encouraged by the DoH (2010) to
improve the nations health and well being. Exercise contributes to a positive self
concept which enhances confidence and self respect (Bucks et al., 2009). Studies
(Abbott et al., 2009; Daniels, 2010) have highlighted that having a normal life style
and not appearing different from their peers was important for people with CF.
However some participants found it embarrassing to cough when exercising in a gym
and therefore only attended the gym when well. Some participants reported doing
exercise instead of chest physiotherapy. Although it is considered that exercise can
enhance airway clearance it is not a substitute for chest physiotherapy (Bott et al.,
2010; Bradley & Moran, 2011).
7. 1. 6. Patient Education, Empowerment and Adherence 
An SMPP is an effective means of addressing barriers to adherence as a persons
health beliefs, knowledge and skills need to be identified. For those with negative
health beliefs and the perception that physiotherapy was ineffective, educating them
about the benefits of physiotherapy and how it can be used as a means of controlling
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their disease can remove barriers to adherence. Patient education is an important
factor in the health care management for people with CF because they need to be
aware of the benefits of chest physiotherapy in optimising their health outcomes even
though they may not feel any clinical benefit following treatment. Recent Cochrane
Reviews (Elkins et al., 2009; Main at al., 2009; Morrison & Agnew, 2009; Robinson
et al., 2010; van der Schans et al., 2009) and a study by Pryor et al., (2010) have
demonstrated the effectiveness of ACT and support current clinical practice and there
by contribute to encouraging adherence behaviours.
In this study involving the participants appeared to improve their sense of ‘ownership’
of their treatment programme and encouraged greater adherence. In working with the
professional the participant was viewed as being an ‘expert’ of their own condition
while the professional was viewed as an ‘expert’ in their clinical practice. This joint
working as equal partners gave ‘permission’ for the participant to be more assertive
and pro-active, as their views were requested and taken into account in designing their
own SMPP. The participants would not have as extensive a knowledge and
understanding of the range of ACTs and the evidence-base that supports these
treatment regimens as the professional. This inequality was ‘corrected’ by the
researcher/professional being aware of the imbalance and actively contributing the
necessary professional input when designing a participant’s SMPP by seeking the
participants’ involvement and respecting their opinions. Empowering the participant
by increasing their knowledge and skills enabled them to be an “expert patient” which
is in keeping with the government’s policy of making people more responsible for
their health care (DoH, 2007). It also gave them the confidence to use their SMPP
effectively.
Patient education can be used to encourage hard to reach populations who are partially
or non-adherent to make informed decisions about their physiotherapy treatment
choices. Physiotherapists need to have an understanding of how adults learn and the
humanistic educational principles (DoH, 2007; Knowles, 1989; Rogers, 1983) which
underpin this approach i.e. self-directed learning, with the teacher acting as a
facilitator. The principals of adult education can be incorporated into the development
of self-management programmes so they are effective in empowering people to take
responsibility for their healthcare and potentially optimise their ability to adhere to
treatment. Over the six month study period the participants were followed up at three
months and again finally at six months in order to re-enforce the implementation of
the negotiated agreed goals.
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7. 2. Conclusions
Although the study was hampered by a small study population, the lack of a control
group, limited measurement techniques and the lack of an internationally agreed
criteria for adherence, it nevertheless added to the understanding and knowledge of
the complex issues surrounding adherence to physiotherapy treatment in CF. In
addition it met the research aims and developed a SMPP that demonstrated a trend of
improving the ability to adhere to chest physiotherapy treatment. The aim of chest
physiotherapy is to keep the chest as clear as possible of secretions in order to reduce
the frequency of chest infections and slow down the decline of lung damage
(ACPCF/CF Trust, 2002; 2011) all of which can potentially bring about improved
health outcomes, a reduction in health care utilisation, greater longevity and a better
QoL.
The following conclusions can be drawn:
7. 2. 1. Overall health improvements and better disease management that the SMPP is
likely to deliver as a result of the SMPP improving the ability to adhere to treatment
(a) Health Improvements

Outcomes
1.
2.
3.
4.
5.
6.

Facilitating chest clearance or maintaining a clear chest
Reducing the rate of decline in respiratory function
Reducing hospitalisation
Reducing the need for additional out-patient visits
Reducing physiotherapy treatment time due to better health
Increasing life expectancy with quality to added years
Improved QoL resulting in
1. Less disruption in employment, family and social life
2. Reduced dependency on psychological support
3. More able to lead a life in keeping with peers

Improved/maintained exercise tolerance potentially resulting in
1. Improved fitness and general well being
2. Improved posture
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3. A reduction in the impact of osteoporosis and the development of
adverse
4. respiratory mechanics in the chest wall
5. A reduction in the risk of musculo-skeletal joint pains
(b) Improved Disease Management
 Reduced hospitalisation
By giving people with CF the knowledge and skills to self-manage by incorporating a
diary for detailed clinical monitoring (FEV1, sputum characteristics) in their SMPP it
may reduce the need for additional out-patient visits, hospital admissions and the
length of stay while an in-patient.

Reduced staff time
An effectively managed SMPP can reduce the demand on physiotherapy staff time as
people with CF should be able to modify their own physiotherapy treatment.

Clinical monitoring
Detailed monitoring of clinical status, managed using a diary format and/or telemonitoring, can form part of a SMPP. Sharing clinical information can act as
feedback encouraging adherence to treatment and provide accurate information
to
enable people with CF to make decisions about modifying their physiotherapy
treatment. Clinical monitoring can result in a more prompt approach to treatment for
chest infections as individually tailored indicators of when to contact the CF
physiotherapist/Adult CF Specialist Clinic can be incorporated into it e.g. if the FEV1
falls below a certain level then the CF physiotherapist needs to be contacted. Prompt
treatment of a chest infection can mitigate the consequences of deteriorating
respiratory function and therefore be less costly in terms of avoiding hospital
admission and the prolonged use of expensive antibiotics.

Admission Avoidance and Early Discharge
An SMPP can be used to facilitate care at home and if required a physiotherapist an
make home visits to ensure that optimal care is being delivered and potentially avoid
admission and facilitate early discharge.
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
More Employable
By adhering to physiotherapy treatment people with CF can potentially be healthier
and therefore more employable and take less time off work for sickness. Being
employed can bring about an improved QoL and a better sense of well being.
Employment reduces the dependency on social benefits and contributes to the national
economy by paying taxes. As previously stated a SMPP, used in conjunction with
clinical monitoring, can keep people at work during episodes of exacerbations treated
with IV antibiotics and thereby reduce the risk of unemployment through high
sickness levels.

Lower pharmacological costs
Improved adherence to physiotherapy treatment can potentially result in fewer chest
infections and a reduced incidence of painful musculo-skeletal complications resulting
in lower pharmacological costs, less time taking medication, and thereby reducing the
burden of care.

Increased life expectancy and a better QoL
The trend of improved adherence to physiotherapy treatment can potentially bring
about better health, an improved life expectancy and a better QoL. Such improvement
can result in people with CF leading a life more in keeping with their peer, being
better able to achieve milestones in life such as employment, marriage and having a
family, thereby reducing the need for psychological support.
7. 2. 2. Adherence and Self-Management Programmes
This exploratory study demonstrated a trend for the SMPP to improve the ability to
adhere to physiotherapy treatment for adults with CF and can consequently be
postulated as a new model of clinical practice. The trend of improved adherence,
although not statistically significant, was supported by the positive comments made in
the qualitative information given by the participants in Feedback Chart and the PostIntervention Physiotherapy Questionnaire. The SMPP is simple to administer,
inexpensive and user friendly. Empowering people through increased knowledge and
skills encouraged them to work in partnership with the researcher/physiotherapist to
develop their own individually tailored SMPP.
7. 2. 3. Adherence and Health Beliefs
Health beliefs are important factors in influencing the ability to adhere to
physiotherapy. If a person perceives that they are able to influence the course of their
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disease, in spite of there being no cure, they are more likely to adhere to treatment. If
people with CF consider that no matter what they do it will make no difference to the
course of their disease then they are less likely to adhere to physiotherapy treatment.
The study suggested that participants who saw physiotherapy as a means of
controlling their disease were more adherent to physiotherapy, while the non-adherent
participants had negative health beliefs that acted as a barrier to adherence. Health
beliefs need to be identified and appropriate patient education strategies put in place
to improve knowledge and understanding so that people with CF develop a positive
attitude towards their physiotherapy treatment in order to optimise their ability to
adhere to physiotherapy treatment.
Adherence and Gender
The relationship between gender and adherence behaviours is poorly understood. The
female participants demonstrated a trend to be more adherent to physiotherapy
treatment than the males for reasons that are unclear. This inequality needs to be
investigated as there are significant differences in life expectancy with males living
longer that females (CF Trust, 2011b), and improving adherence to physiotherapy for
females could potentially reduce this.
Adherence, Patient Education and Empowerment
In order to improve adherence to physiotherapy for adults with CF, physiotherapists
need further training on patient education strategies to improve knowledge and skills
so that people with CF can use self-management programmes to best effect. The CF
physiotherapist needs to take a humanistic approach to patient education by acting as
a facilitator to encourage self-directed learning. Patient preferences for ACT need to
be taken into account as physiotherapy treatment has to be fitted into the patient’s life
style, so it is important that they can choose their preferred treatment (Daniels, 2010;
Pryor et al., 2010). Good communication and close monitoring by means of a
daily/weekly diary incorporated into the SMPP can give feedback that can contribute
to improving adherence to physiotherapy treatment.
7. 2. 6. Summary
The trend of an increased adherence to physiotherapy, following the implementation
of the SMPP, is a significant outcome because physiotherapy is one of the least liked
of CF treatments and has the lowest levels of adherence (Abbott & Gee, 1998; Abbott
et al., 2009; Daniels, 2010; White et al., 2007). If the SMPP, which is inexpensive and
easy to issue in a busy clinic setting, is perceived by the participants as being effective
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in improving their ability to adhere to physiotherapy treatment then a new model of
physiotherapy clinical practice can be postulated.
The study has contributed to the development of evidence-based physiotherapy
practice and consequently provided justification for a change in physiotherapy clinical
practice, that will bring about a more effective and efficient use of scarce
physiotherapy resources. The development of a new model of clinical practice that
could potentially bring about improved health outcomes and better disease
management complies with the CSP’s policy of clinical excellence (CSP, 2005) and
the government’s policy (DoH, 2006b) of clinical governance, which encourages high
standards of evidence-based practice to improve health outcomes for patients and
improve service delivery.
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7. 3. Recommendations for Future Research
7. 3. 0. Introduction
The findings from this exploratory study have contributed to physiotherapy
knowledge of CF, provided useful insights and potential explanations into the
complex behaviours and problems which surround poor adherence to physiotherapy
treatment. There has been little published work in this area and as a result this study
has raised issues which warrant further investigation.
7. 3. 1. Adherence to Physiotherapy
Studies into adherence to treatment in CF focus on why people do not adhere to
treatment. A study into why adults with CF do adhere to physiotherapy would give
insights into these behaviours, that may potentially be used to develop educational
strategies to improve adherence to physiotherapy treatment for adults who have nonadherent behaviours. The measurement of adherence to physiotherapy is dependent on
self-reporting which can be unreliable. The use of telemedicine to record FEV1 or
physiotherapy treatment would result in closer monitoring of the study participants,
which could act as feed back to encourage adherence behaviour (Daniels et al., 2011;
Kettler et al., 2002; Quittner et al., 2000a; 2000b).
7. 3. 2. Health Beliefs
Greater recognition needs to be given to the importance of health beliefs and locus of
control and the influence they have on the ability to adhere to physiotherapy treatment
in CF. Assessment and monitoring tools such as interviewing or a questionnaire need
to be developed to identify them. These assessment tools could be administered at the
first attendance in an adult CF clinic and then regularly reviewed thereafter so that
any changes in health beliefs can be monitored and the SMPP adapted accordingly.
7. 3. 3. Efficacy of ACTs
The efficacy of ACT needs further investigation using more rigorous research
methods over a longer time period (i.e. a year) so that the justification for a particular
physiotherapy treatment is supported by high quality evidence-based research. With
advances in the medical treatment of CF resulting in a healthier population on going
studies need to be conducted so that the evidence base for recommended
physiotherapy treatments are relevant and up to date. To date a long term study of one
year by Pryor et al. (2010), five Cochrane Reviews (Elkins et al., 2009; Main at al.,
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2009; Morrison & Agnew, 2009; Robinson et al., 2010; van der Schans et al., 2009),
the Association of Chartered Physiotherapists in Respiratory Care (ACPRC)/BTS
Guidelines (Bott et al., 2009) and the ACPCF/CF Trust (2011) guidelines for the
physiotherapy treatment for people with CF concluded that there was no evidence to
support the view that one ACT was more effective than any other, but this conclusion
was based on, in some instances poor quality studies. There are also wide ranges of
disease severity and future research needs to investigate the effectiveness of ACTs in
relation to disease severity. CF treatment can be complex and time consuming,
making it difficult to fit into a busy life style, therefore physiotherapy treatment
preferences are an important element in encouraging treatment adherence.
Physical exercise, which is an effective adjunct to ACTs as it enhances respiratory
function (Button & Holland, 2008), warrants further research to investigate the most
effective means of achieving enhanced airway clearance and identifying what is
required to maintain/improve general health and well being. Such an approach would
also be in keeping with the government’s drive to improve the health of the general
population (DoH, 2010). Recommendations for exercise need to be evidence-based
using rigorously designed studies that favour having people with CF as the
participants so that the outcomes are as valid and as reliable as possible.
7. 3. 4. Mixed Methodology
Combining qualitative and quantitative research approaches gave a deeper
understanding of the problems people with CF have in adhering to physiotherapy
treatment and contributed to the development of an intervention to resolve them.
Knowing why people do not adhere to treatment may allow greater accuracy in
predicting poor adherence and the deployment of scarce physiotherapy resources.
The use of qualitative research needs to be encouraged within the physiotherapy
profession as patient preferences are an important influence in adherence behaviour
(Abbott et al., 2009; Daniels, 2010; Pryor et al., 2010). The use of semi-structured
interviews, virtual focus groups and workshops can elicit rich detail of a participants
“life world”, giving insights into their health beliefs and their perceptions of having
CF, which are influencing factors in adherence behaviour. Although the randomised
controlled trial is the “gold standard” of evidence based research it would raise ethical
issues if physiotherapy was withdrawn in order to have a control group because
physiotherapy is an established part of the treatment of CF, and it would be
impossible to have “placebo” physiotherapy treatment.
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Coping Skills 
The study provided unique insights into having CF from the participant’s perspective.
Although the life expectancy for people with CF is continuing to improve it
nevertheless requires a considerable range of coping skills to be able to manage this
life limiting disease in a positive manner. Further studies need to be undertaken to
investigate strategies to develop a person’s ability to cope with CF. By encouraging a
positive approach to physiotherapy treatment through education about its benefits,
leading to a perception of physiotherapy as a means of controlling their disease
process, adherence can be encouraged.
7. 3. 6. Infection Control
The need to comply with infection control issues (CF Trust, 2008; 2004a; 2004b) has
implications for future research methodology as people with CF are not encouraged to
mix socially with each other due to the risk of contacting MRSA or Pseudomonas,
therefore focus groups or workshops are precluded. The development of the internet
as a substitute social forum would be an alternative method of conducting focus
groups and workshops but ethical issues involving anonymity would need to be
addressed.
7. 3. 7. Patient Education
The benefits of exercise specifically for people with CF need to be investigated and
the impact exercise has in enhancing airway clearance ACTs warrants further
investigation, as to date it has yet to be proven (Bradley & Moran, 2011). Studies also
need to be undertaken into the social benefits of exercise, as it enables people with CF
to identify more closely with their peers which can have a positive impact on
adherence behaviours.
To date no studies have been carried out into adult education in CF as it is only in
recent years that people with CF have been living longer. Studies into how patient
education can be made more responsive to the needs of people with CF will ensure
that the necessary knowledge and skills are learnt, so that people with CF are able to
use a SMPP to the best effect, and potentially optimise their ability to adhere to
physiotherapy treatment.
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7. 3. 8. Gender
Gender differences in adherence behaviours need to be investigated so that
educational strategies can be developed to accommodate them. This is important
when developing strategies to optimise the ability to adhere to physiotherapy.
Studies (Masterson, Wildman, Newberry, & Omlor, 2011; Patterson et al., 2008) have
identified that adolescent girls find the impact of having CF more emotionally
difficult to cope than adolescent boys and this may be directly linked to the fact that
females also have a shorter life expectancy than males for reasons that remain unclear
(Patterson et al., 2008). In view of these findings further research is warranted so that
physiotherapy management can be specifically tailored to address these issues.
Further qualitative research need to be undertaken to gain a greater understanding of
why gender impacts on adherence behaviour so that patient education strategies can
be developed to address it. If females become more adherent their health would
potentially improve along with their life expectancy and QoL.
7. 3. 9. Telemedicine
The use of telemedicine to monitor clinical changes and give feedback can act as a
means of encouraging adherence to physiotherapy treatment. Telemedicine can also
be used as a treatment diary and to monitor health status e.g. recording FEV1 so that
the information is available to the CF physiotherapist in order to modify the patient’s
SMPP if necessary. Research needs to be carried out on how to use such electronic
systems for optimal patient benefit and to improve disease management.
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7. 4. Recommendations for Future Clinical Practice
Recommendations for future clinical practice are presented below:
7. 4. 1. Postulation of a New Model of Clinical Practice
As the SMPP demonstrated a trend to improve the ability to adhere to physiotherapy
treatment adults with CF should be given the option to have their physiotherapy
treatment managed using an SMPP. The SMPP empowered the participants and
encouraged them to work in partnership with the researcher/ physiotherapist to jointly
agree a treatment programme. The formalisation of the SMPP, by both the participant
and the physiotherapist signing it, contributed to the “ownership” of the programme
and improved the ability to adhere to physiotherapy treatment. The SMPP is
inexpensive, easy to administer, user friendly, and adaptable to all levels of disease
severity.
Each SMPP would need to be evaluated to ensure that it was effective. This could be
achieved by means of a survey, in the form of a self-administered questionnaire,
which could be issued to a clinic population at regular intervals to record the impact
the SMPP was having on their ability to adhere to physiotherapy treatment.
7. 4. 2. Health Beliefs
Health beliefs need to be identified as they are a framework for understanding and
explaining adherence behaviour. What beliefs a person with CF holds about their
disease and their perception of the effectiveness or otherwise of their physiotherapy
treatment needs to be identified on admission to an adult CF clinic and yearly
thereafter as health beliefs can change over time. To date there has been no
standardised format specifically designed to record health beliefs for adults with CF,
therefore a validated questionnaire needs to be developed to identify and measure
them. The key factors that need to be indentified are what having CF means to them,
their views on the effectiveness of their physiotherapy treatment and any barriers that
impede adherence to physiotherapy treatment. Inaccurate assumptions, which can act
as barriers to treatment, need to be addressed by means of patient education. An
individually tailored SMPP can then be designed to meet their needs in order to
improve their ability to adhere to physiotherapy treatment.
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7. 4. 3. Patient Education
It cannot be assumed that in spite of years of contact with a CF Clinic people with CF
have an accurate and realistic understanding of their condition, the benefits of
physiotherapy treatment and the consequences of not carrying out their treatment.
Patient education is an important factor in the health care management for people with
CF because they need to be aware of the benefits of chest physiotherapy in optimising
their health outcomes even though they may not feel any clinical benefit following
treatment. Recent Cochrane Reviews (Elkins et al., 2009; Main at al., 2009; Morrison
& Agnew, 2009; Robinson et al., 2010; van der Schans et al., 2009) and a study by
Pryor et al. (2010) have demonstrated the effectiveness of ACTs and support current
clinical practice.
On admission to an adult CF clinic an assessment of a person’s knowledge, skills,
understanding of their disease and their physiotherapy treatment needs to be
undertaken so that any lack of knowledge or misunderstandings that could act as a
barrier to treatment can be identified and addressed. This is particularly relevant as
the effectiveness of physiotherapy has frequently been questioned. Information needs
to be given of the benefits of physiotherapy (Elkins et al., 2009; Main at al., 2009;
Morrison & Agnew, 2009; Pryor et al. 2010; Robinson et al., 2010; van der Schans et
al., 2009), even if they are not clinically discernable, and the consequences of not
adhering to treatment need to be clearly explained. Those with clear chest and normal
lung function would still need to check daily that their chests are clear and if that is
the case then treatment needs to focus on exercise/activity to improve/maintain their
fitness and well being.
In order to effectively use an SMPP a patient’s knowledge and skills need to be
regularly updated. Patient education can be managed through individual teaching
sessions, videos, literature and the internet. The CF Trust and the ACPRC have an
excellent range of teaching material. Patient education needs to be based on
humanistic principals (Knowles, 1989) where the teacher acts as a facilitator of
learning.

ACTs and Personal Treatment Preferences
Studies have shown that no one ACT is any more effective than any other (Daniels,
2010; Pryor et al., 2010) therefore personal preferences need to be taken into account
when planning a SMPP. People with CF want to lead lives comparable with their
peers therefore physiotherapy treatment needs to be as effective, efficient and
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incorporated in to a persons life style as much as possible e.g. going to the gym which
is a popular means of keeping fit used by the general population. People with CF are
healthier, living longer, leading busy lives and therefore ‘what works for them’ is
important as they are more likely to adhere to it. Where there are complex time
consuming treatments personal preferences are important as a means of encouraging
adherence behaviour.

Empowerment
People with CF need to be empowered to take more ownership for their condition as a
means of encouraging adherence. Empowering people with long term conditions to
become self-managing is part of the government’s drive for improved health
outcomes and is embodied in the ‘Expert Patient Programme’ (DoH, 2001b; 2005).
The concept of self-management is also part of the government’s initiative to deliver
health services in the community (DoH, 2010a; 2010b) and reduce the need for
hospitalisation e.g. Nunes (2009) acknowledges that choices must be respected whilst
empowerment gives people the confidence to manage their own condition. This
approach requires the patient to have the necessary knowledge and skills to actively
participate in the decision making process required in a self-management programme.
Self-management can be achieved through a humanistic approach (Knowles, 1989) to
learning where the professional acts as a facilitator encouraging the patient to have the
necessary knowledge, skills and confidence to undertake a self-management
programme. A humanistic approach also encourages empowerment by means of the
patient working in partnership with the professional to design their own selfmanagement programme and thereby take more responsibility for their healthcare and
reduce the demand on physiotherapy time. Although the Expert Patient Programme
(DoH, 2001) is delivered in a group setting, which would not be possible for people
with CF due to it contravening Infection Control Guidelines (CF Trust, 2004a;
2004b), the principles of it can be embodied in a one-two-one approach. When people
with CF join an adult clinic the concept of them being empowered to take
responsibility for their healthcare needs to be explained to them so they understand
what is being asked of them.

Clinical Monitoring
Having demonstrated an increased trend in adherence the SMPP could be improved
by incorporating a self-monitoring diary recording clinical details such as cough (dry,
chesty, day or night, trigger factors), sputum (graded by colour chart, volume,
viscosity) and FEV1 along with individually tailored indicators of when to contact the
CF Clinic such as increased coughing, haemoptysis or reduced exercise tolerance.
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Close monitoring can encourage prompt management of developing respiratory
problems and thereby help to mitigate the damaging consequences on respiratory
function. A diary can be used for tele-monitoring e.g. daily/weekly FEV1 recordings
which can be sent to the CF clinic in situations where recovery from a chest infection
is being managed by using intravenous (IV) antibiotics at home. Treatment can be
closely monitored and advise such as changing/adapting an ACT or increasing
exercise/activity can be given. Being treated at home can reduce heath care costs, the
risk of hospital acquired infections, facilitate early discharge and for those in work it
is less disruptive. Parameters can be set such as if the FEV1 falls below a certain level
medical and physiotherapy intervention needs to be sought. Over a period of time
diary recordings can demonstrate trends such as an increase in chest infections during
the winter months warranting prompt treatment. Treating people at home may
necessitate physiotherapists undertaking community visits to assess, treat and possibly
prevent a hospital admission or an additional clinic visit.

IT and Telemedicine
IT and Telemedicine can also be used to record whether treatment such as inhaled
antibiotics to treat chest infections is being taken, prescribed medicines have been
collected and whether emails or texts giving information or treatment reminders have
been opened.
Using electronic patient records can facilitate treatment by having them available to
all members of a CF team for immediate information sharing, the documentation is
legible, they can facilitate auditing of information to identify trends and facilitate
prompt treatment by negating the need to wait for the patient notes. Using texting or
the telephone to re-enforce an SMPP can encourage adherence proving the patient
does not think it to be intrusive.
Video conferencing can be used between professionals to discuss difficult cases
or
using a patients television as a video link to the CF team for consultation can
potentially avoid an additional out-patient visit, facilitate discharge or prevent hospital
admission.

Infection Control Issues
The SMPP needs to be used in a one-to-one capacity as a peer group method of
delivery would not be possible due to infection control guidelines which recommend
segregation of people with CF to prevent colonisation of Pseudomonas and MRSA
infections
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7. 5. Limitations
The study had a number of limitations which are outlined below:
7. 5. 1. Definition of Adherence
 Definition of Adherence
Measurement of adherence was limited as there is no universally accepted definition
of adherence to physiotherapy treatment. For the purposes of this study the researcher/
physiotherapist developed a definition of adherence based on a broad understanding
of being adherent, partial adherent and non- adherent for the purposes of this study.
The definition also accounted for the fact that 100% adherence is unrealistic and
missing up to three treatments in a week for someone who was doing physiotherapy
twice a day was still considered as being adherent. Having such a specific definition
would limit the opportunity for meta-analysis as it was unique to this study. A
universally accepted definition, accommodating for the fact that sustaining 100%
adherence is unrealistic, needs to be developed so that peer review and meta-analysis
studies can be undertaken for the purpose of improving clinical practice.
7. 5. 2 Measurement of Adherence
Studies into adherence to physiotherapy rely on self-reporting which can be inaccurate
due to reliance on poor recall, honesty and a belief that what is being carried out is
correct but the technique and/or duration is inadequate (Abbott,et al., 2009; Daniels,
2010). To date there is no valid and reliable outcome measure for physiotherapy. It is
not possible to rely on the rate of adherence to other treatment modalities in CF being
indicative of the rates of adherence to physiotherapy as there is considerable variation
between treatment modalities (Abbott et al., 2009; Daniels et al., 2010). The study
was limited in measuring adherence as it was only recorded on three occasions by
asking the participants to self-report their level of adherence; firstly at the start of the
study, at the three month follow up and a further three months later which marked the
end of the six month study period. The evaluation of adherence was also based on the
judgement of the researcher/physiotherapist which as studies have shown (Abbott et
al., 2009; Daniels et al., 2010) self-reporting can be unreliable and inaccurate. A selfreported daily diary, which would have aided re-call and improved accuracy of
reporting, was not incorporated into the SMPP. This detailed form of data collection
would have potentially produced more accurate results and acted as a prompt to
encourage greater adherence.
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Rates of adherence in this study were recorded in terms of percentages to give an
indication of the impact that the SMPP had on optimising the ability to adhere to
physiotherapy treatment, but in a small study population (n = 49) such as this,
percentages can give a disproportional impression.
7. 5. 3. Length of Study
This study was of limited duration with the implementation of the SMPP being
conducted for six months over the winter period. This “snapshot” cannot account for
the variations in the level of adherence to physiotherapy treatment which can occur
over a longer period of time. Longitudinal studies of a year or more need to be
undertaken to reflect a potentially variable pattern of adherence, as people with CF
have longer periods of good health. Seasonal variations such as during the winter
months when there is an increased tendency for developing chest infections requiring
a corresponding increase in the frequency of chest physiotherapy, need to be
accounted for. Ongoing longitudinal studies are a useful tool in giving feedback to the
participants as they can re-enforce adherence behaviours by building on success
(Quittner et al, 2000a; 2000b). Studies of one year need to be undertaken to identify if
an intervention has significantly improved adherence and if so has the improvement
been maintained.
7. 5. 4. Small Sample Size
 Small Sample Size
This exploratory study was limited to the full care group of patients in one Adult CF
Specialist Centre. The study investigated potential behaviour changes in response to
the intervention (SMPP) and warranted a more-in depth approach which only small
numbers could provide. In this predominately qualitative study, to have increased the
study population by including the ‘shared care’ group or having a multi-centre trial
would have been problematical as the researcher/physiotherapist would have had
insufficient knowledge of the additional participants, and there would be a lack
of
consistency in the clinical assessment of the participants and in the implementation of
the SMPP if other researchers were involved. However, the small study population (n
= 49) had a disproportionate impact on statistical analysis due to the attrition rate,
through incomplete responses and the death of four of the participants. In some
instances a result may not have been of statistical significance but was clinically
important e.g. adherence rates by gender. None the less, 29/49 (59.1%) completed the
study and because of the small numbers it was possible to collect rich detail of the
issues surrounding adherence to physiotherapy for people with CF. Having
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established that the SMPP appears to improve adherence to physiotherapy a future
study could include the involvement of the ‘shared care’ patients. A multi-centre trial
would have enabled a broader range of behaviours to have been investigated.
7. 5. 5. Definition of Physiotherapy Used
As this was an exploratory study physiotherapy was confined to the use of ACTs and
exercise in relation to general activity and the possible enhancement of sputum
clearance. Other treatment interventions such as non invasive ventilation (NIV), the
use of nebulised medication and treatment for urinary incontinence, which come
within the broader remit of physiotherapy, were excluded as not all people with CF
require these treatments whereas all adults with CF should carry out ACTs and have
an exercise programme. Including interventions such as NIV, nebulised medication
and treatment for urinary incontinence would have introduced too many variables and
been too unwieldy in this predominately qualitative study.
7. 5. 6. Reflexivity
The researcher was also responsible for the physiotherapy service to the study
population which could have resulted in the recruitment and analysis of the results
being biased. Measures were put in place to reduce the possibility of bias by ensuring
that the potential participants were given time to reflect on whether they wished to
participate, a psychologist conducted the two sets of semi-structure interviews giving
the interviewees an opportunity to freely express their views, a colleague was
involved in the analysis of the semi-structured interviews and the researcher/
physiotherapist used critical thinking to ensure her analysis and interpretation of the
results and findings were as objective as possible. Reflexivity is discussed further in
‘Reflections on the Study Methodology Used’ (Chapter 7. 6, p.189)
7. 5. 7. The Survey
The cross-sectional survey comprising the Pre and Post-Intervention Physiotherapy
Questionnaires was developed but not validated. It was not the remit of this unique
study to validate a questionnaire, only to design one that met the research aims of
investigating the problem of adhering to physiotherapy and to use the data collected in
the Pre-Intervention Physiotherapy Questionnaire to contribute to the design of the
SMPP. Collecting data on the total study population provided background information
on its characteristics, and by issuing the questionnaire before and after the
implementation of the SMPP, any changes that may have occurred could be
monitored. The survey was based on the non-validated one designed by Carr et al.
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(1996) as it was the only one that had been developed in the UK to investigate
adherence to physiotherapy in adults with CF at the time of the study. Although this
questionnaire had not been validated it was considered to be a valid and reliable data
collecting tool for the purpose of this exploratory study.
Summary
As the adult population
measurement tools such
need to be developed
physiotherapy, over the
with CF is growing, is in better health and living longer
as longitudinal surveys investigating adherence behaviours
and validated. Understanding adherence behaviours to
range of disease severity and age groups, would enable
strategies to be developed to address the issues raised with the aim of bringing about
improved adherence to treatment.

Clinical monitoring
The SMPP only recorded the participants’ physiotherapy programme. Incorporating a
clinical diary, so that information which was recorded in the physiotherapy and
medical notes was shared with the participants, could have acted
as feedback to
encourage adherence e.g. recording FEV1, sputum (colour, volume, viscosity), cough
and exercise tolerance. This approach would have resulted in the participants being
better informed of their condition, enabling them to make decisions about modifying
their physiotherapy treatment if given parameters e.g. if the FEV1 falls below a
certain level to contact the physiotherapist and the CF Team. Potentially it could
encourage a more prompt response to clinical deterioration and help address issues
such as denial which can result in delayed treatment.
Although available in the physiotherapy and medical notes outcome measurements
such as hospital admissions, additional attendance at out-patient clinics and
pharmacological changes were not used in the study. Recording these outcome
measures for each participant, would have given a more detailed understanding of the
impact of the SMPP on adherence behaviours.
The study was limited by the lack of follow up after implementing the SMPP.
Contacting each participant by telephone after starting the SMPP and at the three and
six month reviews, rather than advising them to contact the researcher/physiotherapist
if they had problems, could have acted as a means of re-enforcing adherence
behaviour which may have resulted in a more significant improvement in adherence
to physiotherapy treatment. A study by Daniels (2010) have commented that
185
telephone contact can promote adherence providing it is not viewed by the participant
as intrusive.

QoL
Several QoL measures have ben used (Gee et al., 2000; Henry, 2003; Quittner et al.
2005) in CF but were ‘stand alone’ surveys and were not used as an evaluation tool to
measure the impact of an investigation.
The purpose of adhering to physiotherapy is to improve health and well being and as a
consequence improve QoL. A QoL measurement was not used as the impact of the
SMPP on the ability to improve adherence behaviour had yet to be established and
was therefore an unknown variable. The small sample size (n = 49), which would
reduce even further by the end of the study, the fact men and women with CF view
QoL differently (Congleton, Hodson, & Duncan-Skingle, 1996) and as the disease
progresses perceptions of QoL can vary would have resulted in such small numbers in
each group that the reliability and validity of the outcomes would have been
significantly compromised. The short duration of the study, being six months over the
winter period when potentially chest infections are most prevalent, could have
meant that an increase in burdensome chest physiotherapy that would reduce the
participant’s QoL in the short term thereby making it difficult to extrapolate an overall
change in QoL.
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7. 6. Reflection
7. 6. 1. Reflections on the Study Methodology
The study demonstrated that the use of a mixed methodology of qualitative and
quantitative research approaches provided an in-depth understanding of why people
with CF vary in their levels of adherence to physiotherapy and the reasons that govern
that behaviour. Initially the study used a democratising process-led
“Professionalising” action research typology as it sought to involve the study
participants in both the change and research processes (Hart & Bond, 1996; Reason &
Bradbury, 2001; Waterman et al., 2001) with the aim of bringing about a service
improvement. This approach was abandoned in the first part of the action research
cycle (Plan) - because the participants could not be involved in the research process to
the extent that would be fully compliant with an action research approach. Thereafter
the study broadly followed an action research cycle of plan, action/intervention,
evaluation and reflection but with the participants having a limited involvement.
Determining rigor and reliability in qualitative research has been a contested area.
Broad agreement suggests four major considerations of trustworthiness, reliability,
validity and generalisability to be important criteria for establishing the quality of the
findings (Holloway & Wheeler, 2010; Pope & Mays, 1995).
Trustworthiness
It has been argued that “trustworthiness” of the quantitative research findings is
difficult to achieve since it involves interpretative judgement (Lincoln & Guba, 1985)
however it can be enhanced by using mixed research methods (Dewey, 2006).
Qualitative research requires flexibility and open mindedness with a systematic and
well organised approach to analysis in order to establish its validity. A mixed
methodology, using qualitative and quantitative approaches, enabled the study to
investigate how a person’s behaviour (qualitative approach) may be influenced by
such factors as disease severity measured by their FEV1 (quantitative approach) and
the implementation of the SMPP. With the use of different research tools i.e. semistructured interviews, and a survey with different approaches to analysing the semistructured interviews (Burnard, 1991) approach and thematic analysis (Braun &
Clarke, 2006) the ‘trustworthiness’ of the findings were enhanced through cross
verification. Using a mixed methodology provided greater flexibility to the analytical
approach and functioned as a means of triangulation as the same phenomenon were
examined in different ways and from different perspectives (Holloway & Wheeler,
187
2010). The use of a quantitative research tools (SPSS Windows 10) provided a
rigorous structured approach to analysing the data which when used in conjunction
with the findings from the qualitative research gave a deeper understanding of the
complex issues involved in this area of study. By combining multiple approaches
intrinsic biases and problems that come from a single method can be avoided (Dewey,
2006).
Generalisability
Generalisability is difficult to achieve in qualitative research as it focuses on specific
instances or cases that are not necessarily representative of other cases or populations
(Holloway & Wheeler, 2010). Research findings may only be generalisable once a
valid and reliable analysis has been conducted, with a demonstrable audit trail. In this
study a clear audit trail in the analysis of the semi-structured interviews was
conducted with explanations given where the process was adapted for the purposes of
the study. The researcher attempted to achieve some generalisability in order that the
findings and conclusions may be applied in similar CF settings and populations.
Every Adult CF Specialist Clinic will have a population with its own specific
characteristics such as age, disease severity, social circumstances and variations in
clinical practice meaning that the results and findings from one study in one clinic
may not be replicated in another. However, all Adult CF Specialist Clinics follow the
clinical guidelines as recommended by the CF Trust (2001), so the findings and
results from this study may be applicable in other CF clinic populations.
Reliability
Reliability is concerned with the degree to which further implementation of a study
would yield the same results (Jolley, 2010). To be reliable a measure needs to be
repeatable and reproducible. In this predominately qualitative study, with a small
study population, it can be said that the study was reliable as it aimed to accurately
reflect the views of the participants. This was achieved by using semi-structured
interviews where the participants had the opportunity to express in their own words
their ‘life world’, their views on physiotherapy, what having CF meant to them, the
survey eliciting how effective they considered the SMPP was in optimising their
ability to adhere to physiotherapy treatment. The survey, in the form of the Pre and
Post-Intervention Physiotherapy Questionnaire, was issued to the total study
population thereby giving each participant an equal opportunity to express their views
in their own words when answering the open ended questions. The participants were
also actively involved in evaluating the SMPP by having their views of its
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effectiveness being recorded in the Feedback Chart. By using a variety of data
collection tools the reliability of the study was enhanced.
Reflexivity
Reflexivity refers to the ability of the researcher to suspend pre-conceived ideas and
be open to the data as it is being collected and analysed (Jolley, 2010). In qualitative
research this is through critical reflection on what has been thought and undertaken
(Holloway & Wheeler, 2010). The dual role of the researcher, who was also the
physiotherapist responsible for the physiotherapy service provision to the CF clinic
could have potentially resulted in the outcomes being bias, however this was
mitigated by the use of critical thinking skills which enabled the researcher/
physiotherapist to detach herself from the data. Critical thinking is a high level
intellectual activity that goes beyond the acquisition of knowledge, and is seen as a
key skill for all health professionals to master in an age where they are expected to be
reflective practitioners and base their practice on sound evidence (Castle, 2009).
The researcher, using these principles was aware of the potential of the patients to
feel unduly pressurised into participating in the study. However every effort was made
to ensure that this did not happen by giving the potential participant time to consider if
they wished to participate or not and assurances that if they declined then it would not
affect their care. When collecting information on the Feedback Chart regarding the
effectiveness of the SMPP the researcher/physiotherapist remained non-judgemental
in order to reduce the risk of biasing the results. In this study, a colleague with
research experience and a knowledge of CF, was used to independently review and
refine the coding for the analysis of the second set of semi-structured interviews. It
gave “fresh” insight into the data and enabled the researcher to distance herself from
her pre-conceived ideas, be more objective in her analysis of the findings and be
better able to put them into context (Dewey, 2006). The study was evaluated by
demonstrating an ability to assess the strengths and weakness of evidence and
recognise differences and similarities in data objectively (Castle, 2009) to ensure the
validity and reliability of the outcomes.
Validity
A variety of measurement tools were used in the study (semi-structured interviews, a
survey in the form of the Pre and Post-Intervention Physiotherapy Questionnaires,
FEV1and BMI) to give valid data that was sensitive enough to record any changes that
were made as a result of the SMPP and to record the participants’ views in their own
189
words. It was also important to collect valid and reliable data to develop the
intervention (the SMPP) and to monitor and evaluate its effectiveness. A survey in the
form of the Pre and Post-Intervention Physiotherapy Questionnaires ensured that the
total study populations’ characteristics and opinions were sought in order to contribute
to the design of the SMPP and to monitor its effectiveness, while the Feedback Chart
gave the study participants a further opportunity to evaluate the SMPP.
Meeting the Research Aims
The research questions and study aims are outlined below:

Research Question
Will the SMPP optimise the ability to adhere to physiotherapy treatment in adults
with CF?

Research Aims
1.
To investigate the problems that people with CF have in adhering to
physiotherapy treatment prior to the study
2.
To investigate the level of adherence to physiotherapy treatment prior
to the study
3.
To develop and test the effectiveness of a new SMPP to optimise the
ability of adults with CF to adhere to physiotherapy treatment.
4.
To evaluate the impact of the new SMPP on adherence to
physiotherapy treatment
5.
To postulate a new model of clinical practice for the future
physiotherapy treatment for people with CF
In principal the study met the research aims, with limitations and areas for further
research identified. The study established the level of adherence to physiotherapy
treatment prior to the start of the study as measured by the criteria set by the
researcher/physiotherapist, it set about critically evaluating the results and findings
regarding the problems encountered by people with CF in adhering to physiotherapy
treatment, developed and tested an educational strategy i.e. the SMPP, evaluated its
effectiveness, contributed to new knowledge of physiotherapy treatment and
developed a new model of clinical practice for the future physiotherapy treatment for
people with CF. The study met the research aims of establishing whether the SMPP
optimised the ability to adhere to physiotherapy treatment as the results demonstrated
190
a trend towards increased adherence, which was supported by the predominantly
positive comments of the participants in the Feedback Chart and the Post-Intervention
Physiotherapy Questionnaire. The trend was not statistically significant but was of
clinical importance.
7. 6. 2. Reflections on the Professional Doctorate
Reflection is a learning process designed to gain insight into one’s own practice with
the intention of improving it (Parahoo, 2006). The purpose of reflection in this study
was to use the experiences and knowledge gained in the research process to improve
physiotherapy professional practice.
This exploratory study formed part of my Continuing Professional Development
(CPD) programme and provided an opportunity for reflection which enabled me to set
about improving and developing my clinical practice. The study provided a direct link
between theory and clinical practice and is an example of the work of Benner (1984),
where the accumulation of experience and knowledge contributes to the development
of the novice being able to progress to being an expert. It was through my clinical
experience of treating people with CF that the problems involved in adhering
physiotherapy treatment were observed and used as the basis for this research study.
This unique study provided a stimulating workplace environment and is an example
of the researcher/practitioner in action. The study formed part of the developing
process of professionalisation, fulfilled the principles of the Professional Doctorate
(PD) and provided an opportunity to critically appraise my own professional role in
CF.
Conducting research into my physiotherapy clinical practice provided valuable
insights into how people with CF perceive their disease, and the difficulties they
experienced in adhering to physiotherapy treatment, as well as contributing new
knowledge to physiotherapy practice. These insights contributed to the development
of a new model of clinical practice, improved my professional judgement and
expertise and enabled me to be recognised as an expert practitioner.
I initially considered a career as a consultant physiotherapist in CF but because of the
financial constraints in the NHS such posts did not materialise. My career has
consequently focused on being a senior manager. Currently the NHS is developing
and encouraging service line management where senior clinicians also work as senior
managers. A PD would be an ideal qualification for a career in this form of senior
management.
191
I was very pleased to be awarded four national scholarships




British Thoracic Society
British Lung Foundation
Chartered Society of Physiotherapy – Educational Award
Chartered Society of Physiotherapy – Research Scholarship
I have been very encouraged to have been awarded these national scholarships for my
research work, particularly as it appeared that it was the first time the British Lung
Foundation had given such an award to a physiotherapist. These scholarships were
supplemented by sponsorship from pharmaceutical companies which contributed to
my fees.
7. 6. 3. Evaluation of Learning
Evaluation seeks to assess the value or worth of something (Robson, 2006) which in
this instance is the effectiveness and appropriateness of the PD course. A PD provided
an ideal opportunity to improve my clinical practice by undertaking a substantial
research project which incorporated critical reflection. Critical reflection is an integral
part of a health professional’s CPD. It is a window (Taylor & White, 2000) through
which to view and systematically track changes in practice issues in order to arrive at
new insights to improve and change practice.
By undertaking a PD it has been possible to develop the study by completing the
assignments in Part 1 of the course. Each assignment enabled the study to be
progressed in a logical manner and to be robustly evaluated. The work for the
assignments was based on my clinical practice and formed part of the research
project. The first assignment was Professional Development which enabled me to set
learning objectives for my course. In the second assignment Publication and
Dissemination Unit my work had already been evaluated by peer review as the
literature review for this research project had already been published in the
Physiotherapy Journal. The third assignment, Advanced Research Techniques,
enabled the skills and knowledge I had acquired to be utilised by contributing to the
development of the research methodology and data collection methods. Passing the
assignments, by means of systematic evaluation, enabled the study to be developed. in
a robust and rigorous manner.
The undertaking of this small, unique clinically-based exploratory study enabled the
problems of adhering to physiotherapy to be identified, an intervention to be
developed to resolve them, the effectiveness of that intervention to be evaluated and a
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new and improved model of clinical practice to be postulated. The study also
contributed new knowledge about the problems people with CF experience with
adherence to physiotherapy and closed the gap between theory and clinical practice.
7. 6. 4. Legacy & Professional Role
This new model of clinical practice will enhance the knowledge base of physiotherapy
and encourage further research into the potential of SMPPs. By optimising adherence
to physiotherapy treatment scarce physiotherapy resources can be utilised more
effectively, if people with CF who have non-adherent and partially adherent
behaviours can be identified then educational strategies developed to address them.
The development of a new model of clinical practice complies with the CSP (2010)
vision of clinical excellence and the government’s policy on clinical governance
(DoH, 2006a) both of which encourage high standards of evidence-based clinical
practice to improve health care outcomes and service delivery. The CSP actively
encourages research as part of the developing process of professionlisation (CSP,
2010) and it also validates the clinical practice of its members. This is a worked based
clinical study, involving complex issues in a specialist field where research directly
informed clinical practice.
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