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114 Journal of Pain and Symptom Management
Vol. 27 No. 2 February 2004
Original Article
Barriers to Caregiver Administration of Pain
Medication in Hospice Care
Marijo Letizia, PhD, RN, C, APN, Steve Creech, MS, BS, Ellen Norton, BSN, RN,
CHPN, Marie Shanahan, MS, RN, CHPN, and Lori Hedges, MS, APRN, BC,
AOCN
School of Nursing (M.L.), Loyola University School of Nursing, Maywood; Cardinal Bernardin
Cancer Center (S.C.) and Center for Home Care and Hospice (M.S.), Loyola University Medical
Center, Maywood; St. Thomas Hospice (E.N.), Burr Ridge; and Horizon Hospice (L.H.), Chicago,
Illinois, USA
Abstract
Barriers to adequate pain management in hospice and palliative care settings are an
important area of investigation. In this study, a Caregiver Pain Medicine Questionnaire
(CPMQ) was developed and psychometrically tested. The CPMQ is a 22-item self-report
instrument that measures concern about reporting pain, concern about administering
analgesics, and difficulty administering analgesics. One hundred fifty-one caregivers of
patients admitted to three Chicagoland hospice agencies participated; these individuals were
family members, hired caregivers in the home, or staff nurses in skilled care facilities. While
only a small percentage of the caregivers expressed concern about communicating
information about the patient’s pain, more than a quarter were concerned about addiction,
tolerance, and side effects from medications. A fourth of the caregivers had difficulty
administering medications because of fear of doing something wrong and difficulty
deciding which or what amount of medications to give. Male caregivers and hired
caregivers had greater concerns, both about reporting information about the patient’s pain
and administering medications. Greater concerns were also evident among less educated
caregivers, caregivers who worked in blue-collar jobs, and caregivers who were homemakers
or retired. Concerns of caregivers in the home were significantly greater than staff nurse
caregivers in skilled care facilities only in the belief that pain could not be controlled and
concern about addiction. Caregivers who had greater concern about addiction and
tolerance, and more difficulty administering medications, rated the patient’s pain as less
completely controlled. These findings remind hospice staff members of the importance of
assessing specific caregiver concerns about medication administration and devising
appropriate strategies to address them. J Pain Symptom Manage 2004;27:114–124.
쑖 2004 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Key Words
Pain management, barriers, caregiver, hospice and palliative care, Caregiver Pain
Medicine Questionnaire (CPMQ)
Address reprint requests to: Marijo Letizia, PhD, RN,
Loyola University School of Nursing, 2160 S. First
Accepted for publication: June 16, 2003.
쑖 2004 U.S. Cancer Pain Relief Committee
Published by Elsevier Inc. All rights reserved.
Avenue, Building 105, Room 2842, Maywood, IL
60153, USA.
0885-3924/04/$–see front matter
doi:10.1016/j.jpainsymman.2003.06.008
Vol. 27 No. 2 February 2004
Caregiver Pain Medicine Questionnaire
Introduction
The undertreatment of pain is a widely recognized, well-documented health care problem.
Unrelieved pain is associated with adverse physiologic and psychosocial consequences,1 and
management of pain has become a priority in
health care in recent years. In the United States,
the Agency for Health Care Research and Quality (formerly the Agency for Health Care Policy
and Research), published a Clinical Practice
Guideline on the Management of Cancer Pain,
emphasizing the numerous and complex barriers to pain management.2 Three problem areas
are identified: those related to the health care
system, to health care professionals, and to patients and families. The third identified area is
the focus of this investigation.
Pain management problems related to patients and families involve beliefs and attitudes
about pain and pain medication;3 two specific
factors identified by the AHCPR are: reluctance
to report pain and reluctance to take pain medications. These factors have been examined in
a number of investigations in the United States
and elsewhere, linking higher patient concerns about pain medication to increased hesitancy to report pain, less analgesic use, and
higher pain intensity levels.4–7
Consideration of the Caregiver in Pain
Management
In hospice and palliative care, the dying
person and his or her family are considered to
be the unit of care. As the dying process and
changes in level of functioning progress, hospice patients become quite dependent on the
caregiver for pain medication administration.
When this occurs, caregivers are involved in
communicating with the hospice staff about the
patients’ pain, making decisions about administering medications, and correctly providing the
medications.8,9 Control of pain is a major concern, and possibly the greatest area of burden,
for these caregivers.6,10 Although pain management is indeed a cornerstone of hospice and
palliative care, staff may focus their efforts on
assessing patients’ pain intensity and quality,
yet overlook barriers that impact caregivers’ administration of medications.11
The purpose of this study was to explore and
describe barriers to caregiver administration of
pain medications in hospice care. This was accomplished by two aims of the study: 1) testing
115
an instrument created for this investigation, and
2) describing the findings obtained when the
instrument was administered to a population of
hospice caregivers. Specific research questions
included: 1) What are the concerns among
caregivers about reporting information about
hospice patients’ pain? 2) What are the concerns among caregivers about administering
analgesics to hospice patients? 3) What are the
difficulties encountered by caregivers in administering pain medications to hospice patients?
4) Is there a relationship between demographic
information, and concerns and difficulties surrounding medication administration? 5) Is
there a relationship between caregiver concerns
and difficulties, and patient pain intensity
levels?
Methods
Study Participants
Three hospice programs in the Chicagoland
area participated in this investigation; each program delivers care to patients in home and
skilled facility locations. The sample consisted of
the specific caregiver identified by the hospice
staff nurse as the individual most involved in
communicating information about the hospice
patient’s pain and in offering and administering pain medications. For inclusion in this
study, the caregiver was required to be18 years
of age and able to read and speak English.
Descriptive statistics for patient, caregiver,
and hospice staff nurse demographic variables
are presented in Table 1. The mean patient age
was 76 years and 64% had a cancer diagnosis.
While 85% of the patients were in the home
setting, 13% were receiving care in skilled facilities; therefore, the caregiver demographics reflect information both about staff nurses in
skilled care facilities and primary caregivers
in the home.
Although patient gender was fairly balanced,
82% of the caregivers were female. Nearly 60%
were either the life partner or adult child of
the patient. Hired caregivers in the home made
up 14% of the caregiver sample; another 12%
were staff nurses caring for those patients in
skilled facilities. The caregiver average age was
56 with an average 13 years of formal education.
Forty-three percent of the caregivers worked
full time; 33% held white-collar/professional
occupations.
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Letizia et al.
Table 1
Patient and Caregiver Demographic Informationa
Patient (n ⴝ 151)
Age (yr)
Gender
Female
Male
Ethnicity
Caucasian
African American
Hispanic
Asian
Residency
Home
Skilled Facility
Diagnosis
Cancer Total
Lung
Genitourinary
Biliary
Other
Non-Cancer Total
Heart Disease
Other
Caregiver (n ⴝ 151)
Age (yr)
Gender
Female
Male
Relationship to Patient
Adult Child
Spouse/Partner
Hired Caregiver
Staff Nurse
Other
Ethnicity
Caucasian
African American
Asian
Hispanic
Education (number of years)
Employment Status
Full-time
Retired
Homemaker
Part-time
Other
Occupation
White-collar/Professional
Homemaker
Retired
Blue-collar/Service
Other
76 ⫾ 13.1 [43, 100]
87 (58)
61 (40)
121
16
9
1
(80)
(11)
(6)
(1)
129 (85)
19 (13)
97
31
13
12
41
51
13
38
(64)
(21)
(9)
(8)
(27)
(34)
(9)
(25)
56 ⫾ 15 [21, 87]
124 (82)
27 (18)
50
39
21
18
23
(33)
(26)
(14)
(12)
(15)
112 (74)
18 (12)
13 (9)
7 (5)
13 ⫾ 3.8 [0, 20]
65
31
23
13
32
(43)
(21)
(15)
(9)
(21)
49
34
22
14
45
(33)
(23)
(15)
(9)
(30)
⫾ values are mean ⫾ standard deviation, values in brackets are
minimum and maximum; values in parentheses are percentages.
Percentages do not add to 100% for some variables due to
missing data.
a
The experience level of the hospice staff
nurses is notable; the average age was 47 years
with an average 19 years of nursing experience
(range 2–42 years) and 6 years of hospice experience (range 1–20 years). Seventy-one percent held a BSN or higher educational degree.
Vol. 27 No. 2 February 2004
Development of the Caregiver Pain Medicine
Questionnaire (CPMQ)
The Barriers Questionnaire (BQ) is a selfreport instrument that assesses ambulatory
cancer patients’ beliefs and concerns that act
as barriers to pain management.7 The first
phase of this project involved modifying the
BQ to assess hospice caregiver concerns. The
primary criterion in creating the Caregiver Pain
Medicine Questionnaire (CPMQ) was adequate
coverage of the AHCPR classification system
using the two factors of: “concern about reporting pain” and “concern about administering analgesics.” An additional third factor,
“difficulty administering pain medications,” was
also included. Two previously identified subscales for the “concern about reporting pain”
factor are: 1) fatalism (the belief that pain is
inevitable and cannot be controlled) and 2)
stoicism (the belief in the importance being
strong and not complaining). Three subscales
for the “concern about administering medications” factor are: 1) concern about addiction, 2)
concern about tolerance, and 3) concern about
side effects. The “difficulty administering pain
medications” factor does not have any subscales. Generation of the item pool was accomplished by review of the literature, nursing
observation, and discussion with content experts. Three hospice caregivers of recently deceased hospice patients also provided feedback
about the instrument items during its development.
Content validity of the CPMQ was established
by six experts in hospice and palliative care.
Using the Content Validity Index,13 each expert
rated the relevancy of items and a percentage
of agreement was obtained (CVI ⫽ 0.89); all
items were retained. The final draft of the
CPMQ consists of 22 items scored on 5-point
Likert scales of agreement (1 ⫽ strongly disagree; 2 ⫽ disagree; 3 ⫽ undecided; 4 ⫽ agree;
5 ⫽ strongly agree). Higher numbers indicated
a higher level of agreement and a greater concern about the item; mean scores were used
in the analysis (see Appendix 1 for sample
CPMQ items). In addition, three open-ended
questions and one structured question about the
caregiver’s perception of the patient’s current
pain control are included in the CPMQ.
Additional Instruments
Three additional instruments were used to
collect information on primary caregiver, patient, and hospice staff nurse variables for descriptive and analytic purposes.
Vol. 27 No. 2 February 2004
Caregiver Pain Medicine Questionnaire
Each registered nurse employed as a staff
member by the three participating hospice
agencies completed the RN Demographic Information form. This form includes: age,
gender, and ethnic background, level of education, years as a registered nurse, years as a
hospice nurse, and part-time or full-time employment.
The Hospice Patient Demographic Information form was completed by the assigned primary nurse and includes: age, gender, ethnic
background, place of residency, and diagnosis.
This form also documents current pain medication orders including the drug name(s),
dose(s), and administration schedule(s).
The Hospice Caregiver Demographic Information form was completed by the primary
caregiver and includes: age, gender, relationship to the patient, ethnic background, level of
education, employment status, and current occupation.
Procedure for Data Collection
After obtaining Institutional Review Board
approval for this investigation, a formal orientation session about the study was held for the
nursing staff at each hospice agency. Information was provided on the background, significance, procedures, and time frame for the
investigation.
As each patient was consecutively admitted
to each hospice program, the hospice nurse
identified and approached the primary
caregiver about study participation during a
regularly scheduled visit within the first week
of the patient’s admission. At that time, the
nurse provided the caregiver with a description
of the study. If the caregiver was interested
in participating, the nurse provided both the
informed consent letter and the CPMQ to
the caregiver; the instrument took approximately 15 minutes to complete. The nurse collected the CPMQ from the caregiver on that
visit.
Statistical Methods
The primary measures for this investigation
were the CPQM factor and subscale scores.
Cronbach’s alpha was calculated for the total
instrument, factor, and subscale scores as a measure of internal consistency. Spearman’s correlation was calculated to evaluate associations
117
among the CPQM scores and continuous/ordinal scaled variables such as age and number of
years of education. Mann-Whitney and KruskallWallis tests were used as appropriate to compare the CPQM scores between groups. The
Chi-square test was used both to evaluate the association between categorical variables and to
determine whether or not the caregiver was
helping administer the pain medication. All
testing was based on determining statistical significance at a two-sided alpha level of 0.05.
Results
Internal Consistency of the CPMQ
One hundred fifty-one caregivers completed
the CPMQ. The total instrument alpha coefficient was 0.89 (Table 2). The alpha coefficients
of the three factors are: concern about reporting pain 0.74; concern about administering
medications 0.89; and difficulty administering
medications 0.89. Alpha coefficients for the subscales range from 0.58 (fatalism) to 0.84 (addiction). The low coefficients for the fatalism and
stoicism subscales may be a result of the small
number of items in these subscales.
CPMQ Scores for the Entire Patient Sample
Table 3 outlines the means, standard deviations, and percentages of caregivers who were
undecided or had at least some agreement with,
or concern about, medication administration.
While minimal concern was expressed about
reporting information about the patient’s pain,
Table 2
Internal Consistency (Cronbach’s Alpha) of the
CPMQ
Scalesa
Total Barriers Scale
Concern about reporting
patient’s pain information
Fatalism
Stoicism
Concern about administering
pain medications
Addiction
Tolerance
Side Effects
Difficulty administering
pain medications
a
Number
of Itemsb
Cronbach’s
Alpha
22
0.89
4
2
2
0.74
0.58
0.67
13
3
3
7
0.89
0.84
0.74
0.77
5
0.89
Each factor and subscale measures the average response to the
items making up the factor or subscale.
Each item is measured on a five-point Likert scale ranging from 1
(least concern) to 5 (greatest concern).
b
118
Letizia et al.
Table 3
CPMQ Factor and Subscale Scores
Scales
Concern about reporting
patient’s pain information
Fatalism
Stoicism
Concern about administering
pain medications
Addiction
Tolerance
Side Effects
Difficulty administering
pain medications
Mean ⫾ SD
Percent
Greater
Than or
Equal to
Threea
1.6 ⫾ 0.63
1.7 ⫾ 0.75
1.6 ⫾ 0.70
5
9
7
⫾
⫾
⫾
⫾
0.77
1.0
1.00
0.73
18
21
31
23
1.9 ⫾ 0.58
3
2.3
2.2
2.4
2.4
a
Percentage of caregivers with an average over all items in the scale
that corresponds to uncertain, agree, or strongly agree that there is
a concern/difficulty.
20-30% of the caregivers indicated at least
some concern about administering medications; concerns about tolerance (31%), side
effects (23%), and addiction (21%) were the
most prevalent. While only 3% of the caregivers
indicated that they had difficulty administering
medications, specific item distribution about
that factor is important to consider (Table 4).
Twenty-two percent of caregivers administering
medications indicated fear of doing something wrong; 20% noted difficulty deciding
which medications to give, and 18% noted difficulty deciding what amount of medications to
give.
Relationship of CPMQ Scores to Caregiver
Variables
No statistically significant associations were
found between CPMQ factor or subscale scores
and the age of the caregiver. However, the
CPMQ scores of male caregivers were statistically significantly higher than female caregivers
Vol. 27 No. 2 February 2004
in all factors and subscales except difficulty administering pain medications (Table 5). Statistically significant associations were also apparent
between the CPMQ scores and the relationship
of the caregiver to the patient in all but the
stoicism and difficulty administering medications items (Table 6). For every CPMQ factor
and subscale, hired caregivers in the home had
the highest scores while staff nurses in skilled
care facilities had the lowest scores. There were
no statistically significant differences in CPMQ
scores of the spouse/partner and adult child
caregivers. Asian caregivers had higher CPMQ
scores than those of other ethnic backgrounds;
statistically significant differences existed in the
concern about reporting pain information,
tolerance, and difficulty administering pain
medication categories (Table 7). Specifically,
analysis of the item “I am afraid of doing something wrong when I give the pain medication”
demonstrated a higher agreement among Asian
caregivers (P ⫽ 0.082).
Level of caregiver education was negatively
correlated to CPMQ scores in every subscale
except difficulty administering medications
(Table 8). However, only concern about reporting pain, fatalism, stoicism, and addiction
were statistically significant. The strength of
these correlations was weak to moderate (⫺0.19
to ⫺0.33). Concern about reporting patients’
pain and fatalism were associated with caregiver
employment status. Homemakers and retired
caregivers showed greater concern than those
employed full or part time (Table 9). When
comparing across caregiver occupations, statistically significant differences were evident in
all but the difficulty administering medication
CPMQ scores (Table 10). White-collar/professional caregivers had lower CPMQ scores than
blue collar/service, homemaker, and retired
caregivers.
Table 4
“Difficulty Administering Pain Medications” Scale Responses
Frequency (%)
Questions
I am afraid of doing something wrong
It is hard to decide which medications to give
It is hard to decide what amount of medication to give
It is hard to decide what time to give the medication
It is hard to remember what time to give the medication
Agree or Strongly Agree
26
23
21
13
11
(22)
(20)
(18)
(11)
(9)
Disagree or Strongly Disagree
94
91
95
104
108
(78)
(80)
(82)
(89)
(91)
Vol. 27 No. 2 February 2004
Caregiver Pain Medicine Questionnaire
119
Table 5
CPMQ Scores by Caregiver Gender
Mean ⫾ SD
Male (n ⫽ 27)
Scales
Concern about reporting patient’s pain information
Fatalism
Stoicism
Concern about administering pain medications
Addiction
Tolerance
Side Effects
Difficulty administering pain medications
2.0
2.1
1.9
2.8
2.9
2.8
2.7
1.9
⫾
⫾
⫾
⫾
⫾
⫾
⫾
⫾
Female (n ⫽ 124)
0.84
1.1
0.82
0.79
1.0
1.1
0.71
0.46
1.5
1.6
1.5
2.2
2.0
2.3
2.3
1.8
⫾
⫾
⫾
⫾
⫾
⫾
⫾
⫾
Pa
0.53
0.63
0.65
0.73
0.96
0.96
0.72
0.61
0.003
0.019
0.003
0.002
⬍0.0001
0.03
0.019
0.873
a
Mann-Whitney U test
Relationship of CPMQ Scores to Patient
Variables
Caregivers were also asked to indicate the
level of pain control experienced by the patient.
The three possible responses were that the pain
was: 1) not being controlled at all, 2) controlled
some of the time, and 3) controlled all of the
time. No caregiver rated the patient’s pain as not
being controlled at all. However, caregivers
reporting patients’ pain as controlled some of
the time had higher CPMQ scores than those
reporting pain as controlled all of the time for
the addiction and difficulty administering medication subscales (Table 12).
There were no statistically significant associations between the CPMQ scores and age,
gender, ethnicity, or diagnosis of the patient.
CPMQ scores of caregivers in the home were
significantly higher than staff nurse caregivers
in skilled care facility only in the concern about
reporting pain information, fatalism, and addiction categories (Table 11).
Correlations of CPMQ Scores to the Pain
Experience
Responses to Open-Ended Questions
Patients were asked to verbally rate their own
pain level using a numeric rating scale ranging
from 0 (no pain) to 10 (worst pain). Eighty
percent of the patients were able to respond to
this question, and their average pain intensity
rating was 3.5. There were no statistically significant correlations between the patient’s pain
level rating and CPMQ scores. The most commonly used pain medications were morphine
(45%) and transdermal fentanyl (20%); 76% of
the patients had opioid medications prescribed.
Three open-ended questions on the instrument asked the caregiver the following: 1) Do
you have any questions about the pain medication
that is prescribed?; 2) Do you have any additional
concerns about giving the pain medication?; and 3)
Is there anything else that makes it difficult for you
to give the pain medicine? Caregivers responded
by asking specific questions about prescribed
medications, such as: What is the difference between
morphine and the other pain medicines?; Does the
Table 6
CPMQ Scores by Caregiver Relationship to Patient
Mean ⫾ SD
Scales
Concern about reporting patient’s
pain information
Fatalism
Stoicism
Concern about administering
pain medications
Addiction
Tolerance
Side Effects
Difficulty administering pain medications
a
Kruskal-Wallis test comparing all four groups.
Spouse/Partner
(n ⫽ 39)
1.7 ⫾ 0.62
1.8 ⫾ 0.78
1.6 ⫾ 0.60
2.3
2.3
2.2
2.4
1.8
⫾
⫾
⫾
⫾
⫾
0.86
1.1
1.0
0.81
0.66
Adult Child
(n ⫽ 50)
1.6 ⫾ 0.66
1.8 ⫾ 0.84
1.5 ⫾ 0.56
2.3
2.1
2.4
2.4
1.9
⫾
⫾
⫾
⫾
⫾
0.74
0.94
1.0
0.72
0.56
Hired Caregiver
(n ⫽ 21)
1.9 ⫾ 0.53
1.9 ⫾ 0.52
1.8 ⫾ 0.73
2.9
2.8
3.1
2.8
2.1
⫾
⫾
⫾
⫾
⫾
0.63
1.1
0.87
0.56
0.51
Skilled Facility Staff
Nurse (n ⫽ 18)
Pa
1.3 ⫾ 0.38
1.3 ⫾ 0.39
1.4 ⫾ 0.54
0.016
0.008
0.081
⫾
⫾
⫾
⫾
⫾
0.002
0.006
0.006
0.009
0.328
2.0
1.6
2.1
2.1
1.7
0.59
0.63
0.87
0.61
0.52
120
Letizia et al.
Vol. 27 No. 2 February 2004
Table 7
CPMQ Scores by Caregiver Ethnicity
Mean ⫾ SD
Scales
Caucasian
(n ⫽ 112)
Concern about reporting patient’s pain information
Fatalism
Stoicism
Concern about administering pain medications
Addiction
Tolerance
Side Effects
Difficulty administering pain medications
1.6
1.6
1.5
2.3
2.1
2.2
2.4
1.8
⫾
⫾
⫾
⫾
⫾
⫾
⫾
⫾
0.64
0.77
0.69
0.78
1.0
1.0
0.77
0.55
African American
(n ⫽ 18)
1.8
2.0
1.7
2.5
2.4
2.8
2.5
1.8
⫾
⫾
⫾
⫾
⫾
⫾
⫾
⫾
0.54
0.65
0.56
0.67
0.88
0.82
0.60
0.74
Hispanic
(n ⫽ 7)
1.5
1.7
1.3
2.4
2.0
2.5
2.4
1.5
⫾
⫾
⫾
⫾
⫾
⫾
⫾
⫾
0.48
0.76
0.39
1.0
1.1
1.4
0.95
0.71
Asian
(n ⫽ 13)
1.9
1.9
1.9
2.6
2.4
2.8
2.6
2.3
⫾
⫾
⫾
⫾
⫾
⫾
⫾
⫾
0.62
0.61
0.91
0.59
01.0
0.85
0.49
0.30
Pa
0.041
0.052
0.09
0.086
0.37
0.025
0.36
0.015
a
Kruskal-Wallis test comparing all four groups.
dosage get adjusted when the body weight changes?;
Are there side effects to come that we haven’t seen on
the present dose?; and Will the medicine continue to
work? In one case, a patient had a 75 µg transdermal fentanyl patch in place, with one tablet
of propoxyphene-acetaminophen available for
breakthrough pain every six hours. The caregiver asked Is it okay to give more pills when her
pain is worse?
Caregivers stated specific concerns about
administering pain medication. One caregiver
remarked that he/she was, sometimes confused
about waiting for the patient to state that there is
pain vs. consistently using the pain medicine. One
patient’s daughter acting as the primary
caregiver in the home stated: I am a nurse and
I am always cautious about giving too much medication and decreasing the breathing capacity although
I know that pain control is extremely important. One
caregiver stated that he associated the use of
morphine with death; other caregiver comments indicated non-specific but clear fear
about and negative attitude toward morphine.
Caregivers reported difficulty administering
medication because of a number of problems.
Dosing confusion was evident in the statement:
The doctor’s orders didn’t match the increments on
the eye dropper. A caregiving spouse commented:
Sometimes she chokes when we give it too fast. She
cannot swallow easily now and it is scary when
the liquid stays in her mouth. Caregivers’ difficulty
in assessing the patient’s pain was evident in
the following statements: Sometimes, it is difficult
to know if my dad is in pain because he often tries to
hide it; and Getting an accurate account from my
nephew about the amount of pain is not easy. Family
member disagreements in providing care were
evident in the following statements: Some of our
family members are reluctant to give the medicine
because they want our mom to always be alert and
talking, and Certain family members are making it
difficult because they are concerned about ‘dope.’ I
am unhappy at being accused of keeping my dad
‘doped up.’ Caregiver burden was evident in the
following statements: Consideration should be
given to the stress level of the caregiver administering
the medication; Education for that person should be
a top priority; It’s hard because I am alone most of
the time; and Resistance on the part of the patient
makes it hard to help.
Table 8
CPMQ Scores by Caregiver Education
Scales
Concern about reporting
patient’s pain information
Fatalism
Stoicism
Concern about administering
pain medications
Addiction
Tolerance
Side Effects
Difficulty administering
pain medications
Spearman’s
rho
P
⫺0.28
⫺0.33
⫺0.19
0.001
⬍0.0001
0.020
⫺0.16
⫺0.24
⫺0.13
⫺0.13
0.062
0.004
0.11
0.11
0.02
0.8
Discussion
In this investigation, 80% of the caregivers
were helping administer medications to
hospice patients. Only a small percent indicated
concern about communicating information
about the patient’s pain to the hospice staff,
possibly an effect of the recent focus of attention on pain management at the end of life.
Agencies provide a Bill of Rights to patients that
Vol. 27 No. 2 February 2004
Caregiver Pain Medicine Questionnaire
121
Table 9
CPMQ Scores by Caregiver Employment Status
Mean ⫾ SD
Full time
(n ⫽ 65)
Scales
Concern about reporting patient’s pain information
Fatalism
Stoicism
Concern about administering pain medications
Addiction
Tolerance
Side Effects
Difficulty administering pain medications
1.5
1.5
1.4
2.2
2.1
2.3
2.3
1.8
⫾
⫾
⫾
⫾
⫾
⫾
⫾
⫾
Part-time
(n ⫽ 13)
0.53
0.59
0.58
0.77
0.99
1.1
0.74
0.57
1.5
1.5
1.5
2.3
1.9
2.3
2.4
1.9
⫾
⫾
⫾
⫾
⫾
⫾
⫾
⫾
0.57
0.85
0.74
0.74
1.0
1.1
0.65
0.59
Homemaker
(n ⫽ 23)
1.8
1.9
1.6
2.6
2.3
2.6
2.7
2.1
⫾
⫾
⫾
⫾
⫾
⫾
⫾
⫾
0.73
0.91
0.62
0.96
1.2
1.0
0.92
0.62
Retired
(n ⫽ 31)
Pa
⫾
⫾
⫾
⫾
⫾
⫾
⫾
⫾
0.046
0.015
0.210
0.229
0.318
0.506
0.113
0.424
1.9
2.0
1.8
2.4
2.4
2.4
2.5
1.8
0.73
0.81
0.79
0.64
0.99
0.85
0.57
0.57
a
Kruskal-Wallis test comparing all four groups.
includes: the right that reports of pain will be
accepted, the right to receive information about
pain, the right to have pain controlled, and
the right to a concerned staff devoted to pain
prevention and management. The level of staff
experience and their commitment to building
rapport with caregivers are crucial variables in
the pain management plan. On hospice admission, staff emphasizes the importance of working together as a team to accomplish the goals
of care expressed by the patient and family.
On average, more than a fourth of hospice
caregivers had concern about tolerance, side effects, and addiction when administering medications; caregiver comments indicate fear of the
use of morphine. Anti-drug messages continue to be prevalent in the media and may
contribute to this finding. However, caregiver
concern about a hospice patient’s risk for addiction persists despite limited life expectancy and
the shift in care from cure to comfort. Clarification of the differences between tolerance, addiction, and physical dependence is essential.
Caregivers must be reassured that tolerance to
most troublesome side effects occurs, and that
these side effects can be anticipated, prevented,
and effectively managed.
While only a small percent of caregivers expressed difficulty administering medications,
those that did were concerned about doing
something wrong or had difficulty deciding
which and what amount of medications to give.
Staff must identify specific components of the
pain management plan that make caregivers
uneasy, stressing that the medication type, dose,
and schedule are appropriate and safe. Simplifying the medication plan can ease caregiver
decision-making; around-the-clock dosing of
medications is recommended. Polypharmacy
should be avoided; it is helpful to use only one
controlled-release opioid accompanied by one
immediate-release product for breakthrough
pain. Liquid medication can be ordered at the
time of hospice admission; the caregiver then
does not have to crush a pill or change to the
liquid formula when the patient’s condition
Table 10
CPMQ Scores by Caregiver Occupation
Mean ⫾ SD
Scales
Blue-collar/Service
(n ⫽ 14)
Concern about reporting patient’s
pain information
Fatalism
Stoicism
Concern about administering
pain medications
Addiction
Tolerance
Side Effects
Difficulty administering pain
medications
a
Kruskal-Wallis test comparing all four groups.
1.9 ⫾ 0.69
2.0 ⫾ 0.97
1.7 ⫾ 0.80
2.6
2.5
2.6
2.6
⫾
⫾
⫾
⫾
0.86
1.1
1.1
0.81
1.7 ⫾ 0.71
White-collar/Professional
(n ⫽ 49)
1.4 ⫾ 0.40
1.4 ⫾ 0.47
1.3 ⫾ 0.51
1.9
1.7
1.9
2.0
⫾
⫾
⫾
⫾
0.59
0.78
0.87
0.58
1.7 ⫾ 0.56
Homemaker
(n ⫽ 34)
1.8 ⫾ 0.63
1.9 ⫾ 0.80
1.5 ⫾ 0.54
2.6
2.3
2.7
2.7
⫾
⫾
⫾
⫾
0.87
1.1
1.0
0.83
2.1 ⫾ 0.60
Retired
(n ⫽ 22)
Pa
1.9 ⫾ 0.85
2.0 ⫾ 0.89
2.0 ⫾ 1.1
0.003
0.001
0.036
⫾
⫾
⫾
⫾
⬍0.0001
⬍0.0001
0.001
⬍0.0001
2.6
2.7
2.4
2.7
0.67
1.1
0.84
0.56
1.8 ⫾ 0.51
0.14
122
Letizia et al.
Vol. 27 No. 2 February 2004
Table 11
CPMQ Scores by Patient Residency
Mean ⫾ SD
Scales
Home
(n ⫽ 129)
Concern about reporting patient’s pain information
Fatalism
Stoicism
Concern about administering pain medications
Addiction
Tolerance
Side Effects
Difficulty administering pain medications
1.7
1.8
1.6
2.3
2.2
2.4
2.4
1.9
⫾
⫾
⫾
⫾
⫾
⫾
⫾
⫾
0.64
0.75
0.73
0.75
1.0
0.98
0.72
0.58
Skilled Facility
(n ⫽ 19)
1.3
1.3
1.3
2.1
1.7
2.2
2.2
1.6
⫾
⫾
⫾
⫾
⫾
⫾
⫾
⫾
0.37
0.42
0.38
0.70
0.82
0.98
0.67
0.51
Pa
0.007
0.005
0.103
0.207
0.033
0.455
0.393
0.151
a
Mann-Whitney U test.
changes. Prescribing ranges in dosages can be
problematic for some caregivers, both in the
home and skilled care facilities; selecting a
specific dose is preferable in those cases. Providing a written chart for caregivers to document
the medication given, the time given, and the
patient response is helpful. Teaching needs to
be repeated on each visit to help caregivers
assimilate information. Limitations of caregivers must be addressed; if they cannot or do not
want to participate in medication administration, an alternative plan must be devised.
Only 18% of the caregivers were male; they
had significantly greater concerns than females
both about reporting information about the patient’s pain and administering medications. Females typically take primary responsibility for
providing care to children and aging or ill
adults, and are often more comfortable doing
so. Staff may need to take more time with male
caregivers in discussing and implementing
the hospice patient’s medication plan. Male
caregivers may also benefit from additional support in the home, including volunteers and
nursing assistants.
Hired caregivers had significantly greater
concern both about reporting information
about the patient’s pain and administering
medications. This finding is noteworthy for
family members who hire caregivers and hospice staff members who involve them in the plan
of care. Even if hired caregivers have experience
in providing home care, it is important to determine if they have had experience caring for
dying patients. If not, their understanding of
and concerns about the dying process must
be addressed. Hired caregivers who believe that
their role is to keep the patient alive may have
fear of blame, legal ramifications, or job loss
when the patient’s condition declines. Staff
must ask hired caregivers what medications they
have administered in the home setting and
their comfort level in providing those medications; misconceptions must be clarified. Language barriers can have a significant impact in
Table 12
CPMQ Scores by Caregivers’ Rating of Patients’ Pain
Mean ⫾ SD
Scales
Concern about reporting patient’s pain information
Fatalism
Stoicism
Concern about administering pain medications
Addiction
Tolerance
Side Effects
Difficulty administering pain medications
a
Mann-Whitney U test.
Controlled some
of the time (n ⫽ 45)
1.7
1.9
1.5
2.5
2.4
2.5
2.5
2.0
⫾
⫾
⫾
⫾
⫾
⫾
⫾
⫾
0.69
0.90
0.60
0.96
1.2
1.1
0.88
0.51
Controlled all
of the time (n ⫽ 75)
1.5
1.6
1.4
2.1
1.9
2.1
2.3
1.7
⫾
⫾
⫾
⫾
⫾
⫾
⫾
⫾
0.58
0.72
0.70
0.68
0.87
0.94
0.70
0.53
Pa
0.120
0.062
0.190
0.069
0.029
0.050
0.230
0.008
Vol. 27 No. 2 February 2004
Caregiver Pain Medicine Questionnaire
the accuracy of communication and must also
be addressed. It is also essential to determine
the competency level of hired caregivers and
ensure that they are adequately prepared to
implement the plan of care. To evaluate, staff
can plan patient visits according to the hired
caregiver’s schedule.
Asian caregivers had significantly greater concern both about reporting information about
the patient’s pain and administering medications in comparison to caregivers of other
ethnic backgrounds. Similar findings were
noted in previous investigations of cancer patients using the Barriers Questionnaire.9,14 The
faith beliefs of some Asian caregivers may result
in a higher value placed on suffering; some may
view illness as a failure and may be less comfortable in volunteering information about a patient’s pain. In working together with caregivers
of all ethnic backgrounds, staff must consider
the cultural context in which pain and pain
management is understood.
Caregiver education, occupation, and employment status revealed similar patterns of
concerns regarding medication administration.
Less educated, homemaker, and retired caregivers had greater fatalism and stoicism beliefs
and a greater concern about addiction. These
findings are similar to those reported with patients using the Barriers Questionnaire.4,7,9,12,15
Employed and more highly educated caregivers may have access to, understand, and use
evidence-based information about pain management; this may help lessen their concerns.
Homemakers, retirees, and caregivers in bluecollar jobs had greater concerns than those who
were in white collar/professional occupations.
Those caregivers may be less inclined to base
their concerns on scientific authority, instead
basing them on personal experience. It is essential to uncover the unique attitudes and beliefs
of caregivers, in addition to their knowledge
base, in developing the pain management plan.
Surprisingly, while caregivers in the home
had higher levels of concern than caregivers in
skilled care facilities regarding pain medication, significant differences existed only in fatalistic beliefs and concern about addiction. The
primary caregivers in skilled care facilities are
staff nurses; in light of the recent U.S. accrediting organization’s (Joint Commission on the
Accreditation of Healthcare Organizations) initiative addressing pain management, it was expected that significant differences would have
123
existed in each area of concern. Skilled care
facility staff beliefs about the importance of
stoicism and concerns about side effects and
tolerance must be addressed in educational
initiatives.
Caregivers who had higher levels of concern
about addiction and tolerance, and more difficulty administering medications, rated the
patient’s pain as less completely controlled;
similar findings were noted in studies of
cancer patients using the Barriers Questionnaire.6,7,9,12,14 It is essential that staff address
caregiver concern that results in less than adequate administration of medications and less
complete control of pain.
Conclusion
Both conceptually and in practice, hospice
and palliative staff members recognize the importance of considering caregiver concerns
about patients’ pain management in the plan
of care. The average pain intensity rated on a
1–10 scale by patients in this investigation was
3.5; no caregiver indicated that the patient’s
pain was not being controlled at all. Nevertheless, a number of specific and significant
caregiver concerns surfaced that were linked to
particular caregiver characteristics; these findings warrant further investigation. Staff are encouraged to initiate discussions with caregivers,
encouraging them to express particular beliefs and concerns about pain and pain medication. Misconceptions can be identified and
replaced with knowledge and understanding as
staff tailor their approaches and strategies to
best address the attitudinal and learning needs
of hospice caregivers.
Acknowledgments
This research was supported by the Loyola
University Palmer Endowment Research Fund,
and by the Beta Omega Chapter of Sigma Theta
Tau. The authors thank Sandra E. Ward, PhD,
RN for her support of the project and for her
careful reading of the manuscript.
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Appendix 1
Sample CPMQ items
Factors and Subscales
Concern about reporting pain
• Fatalism
• Stoicism
Concern about administering medication
• Tolerance
• Addiction
• Side Effects
Sample Item
• It is not realistic to expect that pain can be controlled.
• People in pain should not complain about their pain.
• It is not good when people need to take more of the pain medicine as time
goes on.
• It is not a good idea for people to take pain medicine, because they can get
addicted to it.
• People should take less than the prescribed dose of pain medicine to avoid
side effects.
Difficulty administering medication
• I’m afraid of doing something wrong when I give the pain medicine.