Download Draft psychological and social support service standards

Note: Cultural aspects to be considered in line with Tumour Stream Working Groups’
approach(s)
Background
The Guidance for Improving Supportive Care for Adults with Cancer in New Zealand
(2010)(the Guidance) identified eight topic areas (Information resources, interpersonal
communication, psychological support, social support, complementary and alternative
medicine, support for living long-term with cancer, spiritual support, and co-ordination of
care and support). The Ministry of Health contracted Health Outcomes International to
undertake a stocktake of supportive care in New Zealand, to prioritise the topic areas and
to develop An Implementation Plan for the Guidance for Improving Supportive Care for
Adults with Cancer in New Zealand (2011) (the Plan). Health Outcomes International met
with partners and stakeholders through a series of six ‘Strategic Thinker’ workshops. From
this the top national priority areas were identified as care coordination, psychological
support, social support, and information support. This document outlines the standards for
psychological, social and information support. Other areas from the Guidance such as
Spiritual Support and Interpersonal Communication are also important and standards for
those should be developed in the future.
Diagnosis and treatment of cancer can seriously disrupt and impair people’s lives. Many
will need some form of support to help them cope with the emotional, social and
economic upheaval. People with cancer, their family and whanau’s social support needs
should be routinely and systematically assessed. Information should be provided about the
range of support service options open to them, and the means by which these services can
be accessed. It is essential to have health care professionals specifically charged with the
responsibility of ensuring that social support needs are assessed and addressed accordingly
(the Guidance).
Many people affected by cancer experience emotional distress. This can occur at any point
in the cancer experience. For most people this is a time-limited adjustment reaction and
resolves with no specialised intervention. For others the distress can be more significant
and enduring such as in the form of major depression, anxiety disorders, difficulties in
sexual functioning, neuropsychological syndromes, exacerbation of previous problems,
body image disturbance and the effects of chronic pain.
Estimates of the rates of such problems vary greatly with some suggesting a modest
consensus of up to a third of people with cancer experiencing clinically significant distress
(the Guidance). It has also been estimated that the prevalence of anxiety and depression
rises to 50% for those experiencing a recurrence of disease (NICE 2004). Rates seem to be
affected by a number of factors including expected outcome, disease burden, and type of
cancer (Zabora et al, 2001).
Recent meta-analyses have shown that psychological interventions are effective when
delivered to the correct recipients. Despite this psycho-oncology services are rare in New
Zealand.
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How the psychological and social support service standards were developed
Extensive prior work was done by and on behalf of the Ministry of Health in the
development of the Guidance and the Plan. In addition there are evidence based
guidelines and standards which have already been developed internationally. Consequently
these standards have largely been developed through reference to these prior documents
which include:
Guidance for Improving Supportive Care for Adults with Cancer in New Zealand (2010)
An Implementation Plan for the Guidance for Improving Supportive Care for Adults with
Cancer in New Zealand (2011)
NICE Guidance on Cancer Services: Improving Supportive and Palliative Care for Adults
with Cancer: The Manual (2004)
This work has involved Psychosocial Oncology New Zealand and the Cancer Society of New
Zealand.
Summary of the clinical standards for psychological and social support
The standards are designed to sit alongside the Tumour Stream standards. They are
divided into five focus areas:
 General
 Assessment and Referral
 Information
 Social
 Psychological
Format of the Standards
The standards have been clustered into focus areas. Each cluster includes the relevant
standard which outlines the level of performance to be achieved. Why the standard is
considered important is then explained in the rationale section. This is followed by good
practice points which are supported by either international literature or stakeholder
consensus.
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General Standard
Standard
All staff directly responsible for patient care should offer patients general emotional
support, and the opportunity to discuss issues and ask questions, based on skilled
communication, effective provision of information, courtesy and respect (quote NICE
2004; NZ Guidelines, 2010).
Rationale
Because cancer has such a significant impact on many aspects of people’s lives it is
essential that cancer services and the staff within them are able to respond to this.
Considering the whole person not only improves their quality of life but also aids the
cancer treatment by improving compliance. While some staff will focus more on the noncancer aspects of the person, it is important that all staff are aware of the importance of
psychological and social issues and are able to respond in simple supportive ways. Many
patients report that simple supportive interactions with staff in the normal course of their
cancer treatment have a profound impact on their experience of the cancer journey.
Additionally, the awareness of all staff of the psychological and social aspects of the
cancer journey will allow for the timely identification of more significant emotional and
social support needs.
Good practice points

All staff directly responsible for patient care should be undertaking preliminary
enquiries or screening for distress, social and spiritual need, informing people of
the support services available, and making appropriate referrals (the Guidance).

Health and social care professionals should listen and respond to people in a
manner that enables informed decision-making.

Health professionals should actively seek cultural advisor support where
appropriate when communicating with Maori cancer patients and their whanau and
those affected by cancer from other cultural groups.
Assessment and Referral
Standard
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All patients have a planned, systematic assessment, by appropriately qualified personnel,
to identify psychological and social needs at key points of their cancer journey, using a
validated tool and a clear referral process.
Rationale
The diagnosis and treatment of cancer can seriously disrupt people lives. People affected
by cancer have many needs beyond their medical treatment and may be reluctant to ask
for help. Some may find it difficult to articulate their concerns, or lack of knowledge
about the support services available or the skill to access them. Others may not recognise
their needs at all. Consequently health professionals need to thoughtfully assess social
support needs and ensure people with cancer, their family and whanau get the support
they require (the Guidance).
While many health professionals think they are good at identifying distress, research shows
that they often do not recognise distress in their patients. Patients do not always voice
that they are distressed. For most health professionals distress is not a core aspect of their
training or their job and so it is not their focus or they may not feel confident broaching
this area. There is also the danger with distress that the ‘bystander effect’ operates with
everybody thinking that others are monitoring distress. While the emotional aspect of
cancer can be considered to be the responsibility of all health professionals involved, it is
helpful to have planned intentions to assess for distress and it makes sense that these
assessments are planned for key times throughout the cancer journey.
Good practice points

Key points of the cancer journey include diagnosis, at the start, during, and end of
treatment, at relapse, and when death is approaching (NICE 2004; the Guidance).

Assessment should include psychological, social, spiritual, and financial needs of
the patient and their whanau.

An accurate assessment is more likely if information is gathered from a variety of
sources including the use of a validated tool and a consideration of the risk factors
for distress (e.g. living alone, lower socioeconomic status, marital status, men).

Criteria and pathways for a graduated intervention approach should be developed
to ensure the client is appropriately and efficiently referred to the relevant social
or specialist psychological support services.

Supportive care assessments and interventions should be undertaken in suitable
facilities and locations which take into consideration the needs for privacy and
comfort and the mobility of the client (NICE 2004; the Guidance).
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Information
Standard
All patients, their family and whanau are offered high quality, culturally appropriate
information in plain language that is targeted to their particular needs and stage in their
experience with cancer.
Rationale
Information reduces distress and aids decision making.
Information needs for people change during their experience with cancer.
Information is most effective when it is targeted to the individual patient and their
caregivers.
Good practice points

Information provided must be:
o based on available evidence and lived experience
o written in plain language
o available in different formats (for example visual, written, spoken)
o free of charge to patients , family and whanau, and
o meet the health literacy* levels of patients and their caregivers

All staff responsible for patient care should provide the right information, in the
right way, at the right time.

Health professionals should familiarise themselves with the information resources
available.

People affected by cancer should be offered help to understand information
materials if they request (NICE, 2004).

Involvement of subject experts and consumer representatives is actively sought in
the design, development and evaluation of cancer information resources.
*Health Literacy. The capacity to access, use and understand essential health information
and services necessary to make informed health decisions (Ratzan and Parker, 2000).
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Social support
Standard
People with cancer, their family and whanau experience an integrated and co-ordinated
system of social support throughout their cancer experience, overseen by trained health
professionals working collaboratively (NZ Guidelines, 2010).
Rationale
People often do not know about the range of support services available to them and are
not offered them. It is frequently the people who struggle the most who are least able to
find and access the supports they need. Hence it is it the responsibility of the support
services to work together to make this process as easy as possible for the people with
cancer, their family and whanau.
Good practice points

The social support needs of those affected by cancer should be addressed by
relevant health and social support agencies working collaboratively with people
with cancer (NZ Guidelines, 2010).

People with cancer, their family and whanau should be made aware of all their
support entitlements, be provided with good quality information about them, and
if they choose, be guided through the process of accessing them in a timely
manner.

There should be a seamless interface between hospital and community based social
support services (the Guidelines).

Up to date social service directories should be accessible by all staff and people
affected by cancer (the Guidelines).
Psychology
Standard
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The psychological wellbeing of people with cancer is considered at all stages of the cancer
pathway. Patients and carers found to have significant levels of psychological distress
should be offered prompt referral to specialist psychological support and care, as part of
an integrated cancer service (NICE 2004, the Guidance, 2010)
Rationale
Whilst most people are able to cope with the emotional impact of the cancer journey
using the skills that they have, many experience significant significant ongoing distress.
Some people experience psychological issues which can be ongoing and can interfere with
their medical treatment. These people need to be able to access specialist psychological
expertise. Others develop psychological challenges as result of their treatment (e.g.
sexual dysfunction) and will also benefit from specialist psychological care to reduce the
ongoing burden of their cancer experience. This care has been shown to not only benefit
the recipient but also to benefit others.
Good Practice points

Staff providing specialist psychological care should be qualified to do so, and work
within the scope and competencies of their disciplines (the Guidance)

Empirically supported treatments should be used as front line interventions (the
Guidance).

A clear process is in place for referring to a psychiatrist.
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