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Abstract
Due to the critical role of family caregivers in cancer pain management, this
systematic review was undertaken to examine what is known about of their
experiences and needs. Searches were conducted using electronic databases,
and research reports from 1991 to 2007 were analyzed using a matrix method.
Family caregivers were actively engaged in assisting with pain management
and experienced significant needs and concerns related to this role. Myths and
fears about opioid use remain widespread across cultures studied and
across care settings. Family caregivers need education about pain management, training in problem-solving skills, and recognition from providers
about their role in pain management. When clinicians better understand and
respond to the needs of the family caregivers, they can enhance the quality
of life and care outcomes for both patients and their caregivers.
Keywords
family caregiver(s), pain management, cancer pain, systematic review, matrix
method
1
Corresponding Author:
Mary Ann Meeker, Assistant Professor, Wende 303, 3435 Main Street, School of Nursing,
University at Buffalo, The State University of New York, Buffalo, NY 14214
Email: Meeker@buffalo.edu
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Meeker et al.
for the caregiver? (e) What interventions, if any, have been effective in
helping family caregivers with pain management?
Method
We sought reports of research that included a focus on family caregivers for
adult patients with cancer pain. We included studies that collected data only
from caregivers, as well as studies that collected data from both caregivers
and patients. However, only findings that related to caregivers and helped
answer the research questions were assessed for this review. To identify the
pertinent research reports, we conducted literature searches using the electronic databases of MEDLINE, CINAHL, PsycInfo, and Cochrane Database
of Systematic Reviews. Searches were conducted using the following terms
singly and in combination: pain, pain management, cancer, palliative care,
caregiver, and family caregiver. An experienced health sciences librarian
assisted with these searches to insure comprehensiveness. Abstracts for all
retrieved citations were reviewed and applicable studies obtained and
reviewed in depth. The searches including the term palliative care were
found to lack precision and failed to contribute pertinent reports that were not
retrieved using the other terms. Results were limited to empirical studies in
English language published between 1991 (the earliest study identified that
met our inclusion criteria) and 2007. Reference lists of retrieved reports were
examined to identify additional pertinent publications.
The selected studies were reviewed and analyzed using Garrards (1999)
matrix method. Information was extracted and organized in tabular format to
allow vertical as well as horizontal comparisons. Information included the
purpose of each study, the research questions, the theoretical framework,
design, characteristics of the sample, measures, and findings. Use of these
matrices facilitated within case evaluation of each study and across case
assessment of the elements extracted. For example, characteristics of the
samples across the set of studies could be assessed by reading the matrix
vertically. Comparative analyses were conducted to answer the questions
guiding this review.
Results
The search strategy resulted in identification of 37 reports that included 2
review articles and 35 primary research reports of 33 separate studies. The
review articles (Ferrell & Dean, 1994; Pargeon & Hailey, 1999) were examined to ensure all relevant studies were identified and included in this analysis.
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33
Purpose
5 Elliott, Elliott,
Murray,
Braun, and
Johnson
(1996)
Design
Sample
Qualitative
descriptive
Barriers Questionnaire
Terminally ill
Reported
pain
Metastatic
disease;
opioid
analgesia
(continued)
Interview guide
Barriers Questionnaire4
of 7 subscales were used
Caregiver measures
Reported
pain
Disease
status
Focus on patient/
Cross-sectional 40 dyads from
caregiver congruence survey
Israel
Symbolic
interactionism
75 CGs of
CPM occurs in social Descriptive,
outpatients in
context of family. CG exploratory,
Australia
crossmediates outcomes
sectional
survey
Focus on barriers to
Cross-sectional 37 CGs of
pain management
survey
home hospice
patients
Conceptual/theoretical
underpinnings
Explore attitudinal
1 Aranda et al.
barriers to effective
(2004; same
CPM in family CGs
sample as
study
No. 34)
2 Berry and
Assess concerns about
Ward (1995)
reporting pain and
using medications;
examine relationship
between CG
concerns and patient
pain reports
3 Berry (2007)
Explore perspectives
of CGs of terminally
ill nursing home
residents about
pain and pain
management
Assess beliefs about
4 Dar, Beach,
cancer pain in
Barden, and
patients and spouses
Cleeland
(1992)
Authors (date)
34
Purpose
Conceptual/theoretical
underpinnings
Design
Sample
Authors (date)
Table 1. (continued)
Interview guide
Opioid
analgesia
Unspecified
analgesia
Opioid
analgesia
(continued)
Caregiver measures
Unspecified
analgesia
Disease
status
35
Purpose
Conceptual/theoretical
underpinnings
Design
Sample
Disease
status
Examine barriers
13 Kimberlin,
and facilitators
Brushwood,
to effective
Allen,
communication in
Radson,
CPM
and Wilson
(2004)
14 Letizia, Creech, Explore and
describe barriers
Norton,
to administration
Shanahan,
of medication in
and Hedges
hospice care
(2004)
Focus on barriers to
pain management
22 patients and
16 CGs
Qualitative
descriptive
Impaired
communication as
a barrier to pain
management
Caregiver measures
Terminally ill
(continued)
Self-efficacy in pain
management; Caregiver
Strain Index; Profile of
Mood StatesB
Not reported Interview guides for focus
groups and interviews
Terminally ill
22 dyads; 2
Surveyin
10 Fine and Busch Compare patient and Focus on patient/
patients had
caregiver congruence person
(1998)
CG descriptions of
neuromuscular
interview
breakthrough pain
disease; 20 had
with
in home hospice
questionnaire cancer
patients
Terminally ill
63 dyads;
11 Keefe et al.
Examine relationship Banduras self-efficacy Telephone
patients were
theory
survey;
(2003)
between CG selfhospice eligible
correlational
efficacy for CPM and
analyses
both patients and
CGs adjustment
Experimental
78 dyads
Not explicit; implied
12 Keefe et al.
Test the efficacy of
Banduras self(2005)
partner guided CPM
efficacy theory
protocol
Authors (date)
Table 1. (continued)
36
Purpose
Compare CPM
barriers of patients
and CGs and
relationship of
barriers with
pharmacological
CPM
16 Lin, Chou, Wu, Investigate the
effectiveness of a
Chang, and
patient education
Lai (2006)
program on reducing
patient and CGs
barriers to CPM
17 Lin, Lai, and Lo Compare pain and
(2001)
concerns about
CPM in curative vs.
palliative situations
18 Lin et al.
Examine CG barriers
(2000)
to CPM and
relationships to
hesitancy to report
pain, administer
medications,
analgesic adequacy
15 Lin (2000)
Authors (date)
Table 1. (continued)
Design
Sample
(continued)
Barriers Questionnaire
Taiwan Form
Barriers Questionnaire
(Taiwan Form)
Metastatic
Cross-sectional 40 dyads;
disease
inpatients
quantitative
with advanced
survey
disease
Unspecified
Cross-sectional 80 pairs of
analgesia
survey
palliative care
inpatients and
family CGs
from Taipei
Focus on barriers to
pain management
Focus on barriers to
pain management
Barriers Questionnaire
(Taiwan Form)
Unspecified
61 dyads from
analgesia
an outpatient
clinic in Taiwan
Barriers Questionnaire
(Taiwan Form)
Unspecified
analgesia
Experimental,
longitudinal
Caregiver measures
Disease
status
Focus on barriers to
pain management
Conceptual/theoretical
underpinnings
37
22 Miaskowski,
Kragness,
Dibble, and
Wallhagen
(1997)
21 Mehta and
Ezer (2003)
Sample
Disease
status
McGill-Melzack Pain
Questionnaire;Visual
Analogue Scale (VAS)
for pain intensity; Pain
Coping Strategies
Questionnaire
Caregiver Quality of
Life-Cancer; Memorial
Symptom Assessment
Scale; General Caregiver
Mastery Scale; Caregiver
Demands Scale; Brief
COPE Scale
Semistructured interview
guide
Caregiver measures
(continued)
Terminally ill
Reported
Cross-sectional 18 dyads; lung
cancer patients pain;
quantitative
metastatic
survey
disease
for 50% of
sample
Experimental
329 dyads
Terminally ill
Design
9 couples from
Frankls search for
Qualitative
Explore meaning
Canada
meaning
multiple case
of cancer pain to
design
spouses of palliative
care patients;
compare with
patients meanings
Cross-sectional 86 CGs for
Determine differences Focus on patient/
patients with
caregiver congruence quantitative
in mood states,
pain; 42 CGs
survey
health status, CG
for patients
strain between CGs
without pain
of patients with pain
vs. no pain
19 Madison and
Wilkie
(1995)
Conceptual/theoretical
underpinnings
Focus on barriers to
pain management
Purpose
Authors (date)
Table 1. (continued)
38
26 Redinbaugh,
Baum,
DeMoss,
Fello, and
Arnold
(2002)
Identify factors
associated with
accurate CG
estimates of pain
Telephone
Compare patients and Focus on patient/
caregiver congruence survey
CGs perceptions of
patient self-efficacy
for managing pain
and other symptoms
25 Porter et al.
(2002)
Focus on patient/
Cross-sectional 31 dyads; home
hospice
caregiver congruence quantitative
patients
survey
30 dyads
Terminally ill
Newly
diagnosed
with lung
cancer
(continued)
Semistructured interview
guide (elicit family
carers knowledge and
experience in CPM at
home)
QLQ-LC13 (lung cancer
quality of life); selfefficacy for symptom
management; Impact of
Events Scale; Caregiver
Strain Index; modified
Quality of Marriage Index
Family Pain Questionnaire;
Brief Symptom Inventory;
Caregiver Burden Screen;
patient activities of daily
living needs (per CG)
Descriptive
qualitative
19 CGs of
home hospice
patients,
Australia
Terminally ill
Caregiver measures
Focus on barriers to
pain management
Disease
status
Sample
Reported
pain
Design
Focus on patient/
Cross-sectional 78 dyads; 23
congruent
caregiver congruence quantitative
dyads; 55
survey
noncongruent
Conceptual/theoretical
underpinnings
Examine differences
in patient and CG
variables in dyads
with congruent vs.
noncongruent pain
intensity scores
Develop pain
education program
for CGs of cancer
patients
Purpose
23 Miaskowski,
Zimmer,
Barrett,
Dibble, and
Wallhagen
(1997)
24 Oldham and
Kristjanson
(2004)
Authors (date)
Table 1. (continued)
39
Purpose
Conceptual/theoretical
underpinnings
To describe the
difficulties with
PM identified
during a teaching
and coaching
intervention
Examine decisions
and ethical conflicts
related to CPM
29 Schumacher,
Koresawa,
West,
Hawkins, et
al. (2002)
30 Taylor, Ferrell,
Grant, and
Cheyney
(1993)
27 Riley-Doucet
(2005)
Sample
Cross-sectional 81 dyads in
outpatient
quantitative
cancer center
survey
Design
Reported
pain
Disease
status
90 CGs; 155
Presence
Part of a
patients
of bone
randomized
metastases
controlled
trial; content
analysis of
responses to
semistructured
questionnaire
52 patients; 33
Presence
PRO-SELF Pain
Content
CGs
of bone
Control Program
analysis of
metastases
qualitative
data from a
randomized
controlled
trial
10 triads; patient, Opioid
Ferrells holistic model Crossanalgesia
caregiver, and
of quality of life
sectional,
nurse
qualitative
descriptive
Authors (date)
Table 1. (continued)
(continued)
Semistructured interview
guide
Transcribed recordings
of problem-solving
interactions during
intervention
Semistructured interview
guide
Perception of Pain
Controllability; Subjective
Caregiver Burden
Inventory
Caregiver measures
40
32 Ward,
Berry, and
Misiewicz
(1996)
33 Wells,
Hepworth,
Murphy,
Wujcik, and
Johnson
(2003)
31 Vallerand,
CollensBohler,
Templin, and
Hasenau
(2007)
Authors (date)
Purpose
Conceptual/theoretical
underpinnings
Focus on barriers to
Determine PM
pain management
knowledge and
examine concerns
and misconceptions
about reporting
pain and using
medications
Focus on barriers to
Examine concerns
pain management
about reporting pain
and using analgesics
in hospice setting
Focus on barriers to
Assess value of
pain management
continued access
to information
following baseline
pain education
program
Table 1. (continued)
Disease
status
Caregiver measures
Terminally ill
Unspecified
analgesia
(continued)
Barriers Questionnaire
Sample
Cross-sectional 35 dyads;
hospice
quantitative
patients
survey
Descriptive,
crosssectional
survey
Design
41
Compare knowledge
and perceptions
of pain between
patients and CGs
Descriptive,
crosssectional
survey
Reported
pain
Disease
status
Cross-sectional 86 dyads;
Pain as
outpatients
quantitative
multidimensional
survey
(physiologic, sensory,
affective, behavioral,
sociocultural,
cognitive aspects)
Sample
Reported
pain
Design
75 dyads;
outpatients,
Australia
Conceptual/theoretical
underpinnings
Greens PRECEDE
Describe FCG
model of health
involvement in and
behavior
perceptions of CPM
Purpose
Investigator developed
survey to assess
predisposing factors,
enabling factors, and
reinforcing factors for
CG pain management;
Brief Pain Inventory
Caregiver measures
Note: Except where otherwise noted (see No. 10, Fine & Busch, 1998), all patients had cancer. Except where otherwise noted, the study was
conducted in the United States. CPM = cancer pain management; CGs = family caregivers; dyads = patient and his or her family caregiver.
35 Yeager,
Miaskowski,
Dibble, and
Wallhagen
(1995)
34 Yates et al.
(2004; same
sample as
study No. 1)
Authors (date)
Table 1. (continued)
42
reported pain; patient was using unspecified analgesia; patient was using
opioid analgesia; metastatic disease; terminally ill/hospice eligible.
Table 1 indicates measures (in addition to demographic data collection)
used by the researchers to assess family caregivers. Although some measures
assessed characteristics of the caregivers themselves, for others (e.g., the
Brief Pain Inventory) the caregiver was asked to respond concerning characteristics of the patient. The most frequently used measure was the Barriers
Questionnaire (Ward, Berry, & Misiewicz, 1996; eight studies), and the
Family Pain Questionnaire (Ferrell et al., 1995) was used in six studies.
Researchers reported adequate psychometric properties for all instruments
employed.
In summary, more than 60% of the studies included in this review were
descriptive studies, limited as a result of convenience sampling and their
cross-sectional nature. The small set of intervention studies begins to provide
evidence for components needed to assist caregivers.
Research Question 1: What are the demographic characteristics of the
family caregivers whose pain management experiences have been
studied?
Twenty-nine studies reported the gender of caregivers; the majority
(70%) were females, ranging from 44.4% to 90%. Male caregivers were the
majority (55.6%) in a single study (Mehta & Ezer, 2003). In 22 studies,
60.2% of caregivers were spouses. In 18 studies reporting other caregiver
relationships, less than one quarter (21.8%) were adult children. Other family
members and close friends comprised, on average, 12.3% of samples across
17 studies reporting these relationships.
Across 27 studies, caregivers ranged in age from 41.9 to 60.5 years, averaging 55.8 years (SD = 5.3). With the exception of four studies conducted in
Taipei (Lin, 2000; Lin et al., 2000, 2006; Lin, Lai, & Lo, 2001), the samples
were predominantly White. Of those reporting race, and excluding the
Taiwan studies, the majority of caregivers were White (82.3%); Blacks comprised about 12.5% across the 10 studies reporting that information. When
reported, Hispanics were poorly represented with the exception of the study
by Ferrell et al. (1995) in which 24% of caregivers were Hispanic.
Caregiver education, assessed in various formats, was reported in 18 studies.
Across the seven studies reporting the proportion of the sample by educational level, on average 51% had more than a high school education. For
studies reporting the mean years of education (n = 11), on average caregivers
had 11.6 years of education. Thus, across the set of studies reporting
demographics, the samples were predominantly comprised caregivers who
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Meeker et al.
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Meeker et al.
to pain management, both informal and formal caregivers for hospice patients
reported fears about addiction, tolerance, and side effects (Letizia, Creech,
Norton, Shanahan, & Hedges, 2004). Among Australian family caregivers,
approximately three out of four responded with concern or uncertainty
to items assessing fears of addiction, tolerance, side effects, and disease
progression (Aranda et al., 2004).
Concerns very similar to those identified in U.S. studies have been found
for Taiwanese family caregivers. Lin (2000) adapted and translated the
Barriers Questionnaire to make it culturally appropriate. Modifications
included removing the fear of injection subscale and adding subscales for religious fatalism, that is, believing that pain has spiritual significance and needs
to be experienced for spiritual reasons, and adding a subscale assessing the
belief that pain medications should only be given as needed when pain is present (i.e., p.r.n.). The most frequently endorsed barriers for a sample of 159
caregivers for oncology outpatients (Lin, 2000) and for caregivers of 80 hospice inpatients (Lin et al., 2000) were fears of tolerance, addiction, disease
progression, and side effects. Taiwanese caregivers in the latter study also
frequently and inaccurately endorsed the idea that pain medications are best
given as needed rather than on a regular schedule. Similar findings about the
most salient barriers were reported for a sample of 40 Taiwanese caregivers of
hospitalized patients with advanced cancer (Lin et al., 2001) and in the preintervention measures for 61 dyads of oncology outpatients receiving treatment
for pain and their primary caregivers (Lin et al., 2006).
The behavioral effect of inaccurate beliefs about pain management can
result in caregivers hesitancy to report pain to health care providers and to
administer analgesics. For example, in one study (Lin et al., 2001), 35% of
caregivers indicated that they had been reluctant to report pain during the
preceding month and were found to have greater concerns related to distracting the physician, addiction, fatalistic beliefs, and higher total scores on the
Barriers Questionnaire than those caregivers more comfortable in reporting
pain. Higher barriers scores were also positively related to caregivers hesitancy to administer pain medications and to less adequate pain management
(Lin, 2000; Lin et al., 2000, 2001).
Six studies reported which family caregivers (based on demographic characteristics) were more likely to be at risk for inaccurate pain management
knowledge and beliefs, with inconsistent findings. Older age and lower levels
of formal education have been linked with higher endorsement of beliefs that
create barriers to pain management (Lin, 2000; Lin et al., 2000). Barriers
were sometimes higher for male caregivers (Lin, 2000), and in one study
(Aranda et al., 2004), male caregivers specifically expressed higher concern
46
about risk for addiction compared with female caregivers. In a study of caregivers for hospice patients, older caregivers and those with less education
were more likely to believe that communicating pain concerns would distract
the doctor from the primary goal of treating the cancer (Berry & Ward, 1995).
More recent studies have found no relationship between the caregivers age
and the level of barriers (Letizia et al., 2004; Vallerand et al., 2007). Some
caregivers with lower educational levels reported greater concerns (Letizia
et al., 2004). However, Ward et al. (1996) confirmed that higher educational
level was associated with lower barriers scores for the patients studied but did
not find this relationship for the caregivers. There has been little assessment
of barriers related to caregiver ethnicity, but Letizia et al. (2004) found that
Asian caregivers were more anxious about making a mistake related to giving
pain medications. In summary, we have no clear evidence by which to demographically identify caregivers more likely to experience common barriers.
Barriers are widespread among the caregivers who have been studied and
affect caregivers in both acute and palliative care settings (see Table 1).
Attention to barriers and difficulties strongly predominates in this body of
work. In contrast, however, Yates et al. (2004) reported that caregivers surveyed for their study reported high levels of confidence and preparedness for
assisting with pain management, and 87% reported no difficulty in talking
with providers on the patients behalf.
Congruence of Assessments
Another characteristic of family participation in cancer pain management
that has been empirically examined is the extent to which patients and caregivers assess the patients pain experience congruently. Findings are mixed.
Four studies found that caregivers rated the patients pain higher than the
patients report (Elliott, Elliott, Murray, Braun, & Johnson, 1996; Ferrell,
Ferrell, Rhiner, & Grant, 1991; Redinbaugh et al., 2002; Yeager et al., 1995),
and in two studies, they rated the distress experienced by the patient as
higher than the patients rating (Ferrell et al., 1995; Yeager et al., 1995).
Comparing patients and caregivers beliefs about the controllability of pain,
Riley-Doucet (2005) found that all dyads were congruent. All of the patients
shared a belief with their caregiver that pain was or was not controllable.
Madison and Wilkie (1995), the only researchers in this set of studies who
assessed the patients locus of control, reported that for patients with an internal locus of control, family members tended to overestimate the patients
pain level, whereas for those with external locus of control, the patients own
47
Meeker et al.
pain report tended to be higher than the rating made by their family member.
Dar, Beach, Barden, and Cleeland (1992), who studied married patients and
spouse caregivers, reported that caregivers overestimated average pain but
were congruent in assessments of worst pain. Of these caregivers, 45%
believed that patients were underreporting, or minimizing, their experience
of pain. And, validating this perception, the patients in this study revealed
that they often tried to hide their pain (Dar et al., 1992). In a more recent
study to compare pain assessments, Australian researchers (Yates et al.,
2004) found no significant differences in pain ratings between cancer outpatients and their caregivers, and ratings varied equally in both directions when
there was a lack of congruence. These diverse findings suggest that pain
assessment is complex and influenced by personality, relationship, and other
contextual factors for both the patient and the caregiver. Some researchers
have also investigated the association of congruent pain assessments with
patient and caregiver outcomes. These findings will be addressed below.
Research Question 4: What is known about the effects of caregiver
participation in cancer pain management for the patient and for the
caregiver?
48
49
Meeker et al.
Radson, & Wilson, 2004; Letizia et al., 2004; Oldham & Kristjanson, 2004;
Taylor et al., 1993).
Detailed description of frustrations encountered during pain management
was provided from a qualitative analysis of audio-recorded nurse interactions
with patients and caregivers as part of a clinical trial testing the PRO-SELF
Pain Control Program (Schumacher, Koresawa, West, Hawkins, et al., 2002).
Participants struggled with lack of insurance coverage for prescribed medications, lack of availability of opioid analgesics at various pharmacies, receiving insufficient information about the medications and their usage, and
conflicting pain management guidance from different health care providers.
Challenges included the need to tailor the prescribed regimen to the unique
needs and preferences of the patient, to manage side effects well, and to
respond appropriately when pain increased or a new pain occurred.
Understanding how to use an effective combination of long-acting pain medications and breakthrough medications was difficult for many. Managing
pain was a constant challenge. Problem-solving was an ongoing process of
assessment, strategy generation, evaluation, and modification (p. 372).
In four studies, researchers reported on the pervasive effect on caregivers
when patient pain was unrelieved. Mehta and Ezer (2003) described differences reported by the patient and the spousal caregiver between an in-pain
state and an out-of-pain state. For caregivers, the meaning of the in-pain state
was that the patient was dying. When pain was relieved, caregivers perceived
that life could resume in a more normal way. Berry (2007) also found that
family caregivers constructed the meaning of the patients pain and illness
very differently when pain was well managed as compared with situations
where pain was not controlled. When pain was not well managed, the caregivers seemed to be unaware that pain could be managed and could not separate pain management from the whole illness experience. Miaskowski,
Kragness, Dibble, and Wallhagen (1997) compared mood, strain, and wellbeing between caregivers whose family member was experiencing pain and
those in situations where pain was not a problem. Although no differences
were found in caregiver strain or overall health and well-being, caregivers in
pain situations had significantly higher tension, depression, and total negative
mood scores. Redinbaugh et al. (2002) found that when patients pain ratings
were higher, measures of caregiver distress and burden were also higher.
Given these negative consequences and the challenges encountered during
pain management, it is helpful to consider what factors may moderate the negative consequences for caregivers. Guided by Banduras self-efficacy theory,
Keefe et al. (2003) explored the influence of the caregivers self-efficacy for
50
pain management and found that higher self-efficacy was associated with
less strain and better mood status. Thus, caregivers with greater certainty that
they could be helpful in relieving the patients pain showed better psychological status. Although the studies included in this review overwhelmingly
addressed negative effects on the caregiver, caregivers have sometimes
reported the value to them of being able to have the patient at home with them
(Ferrell et al., 1993; Oldham & Kristjanson, 2004) and their desire to repay
or give back care and the experience of joy in caregiving (Ferrell et al., 1993).
As can be seen in Table 1, pain management problems were identified in
diverse care settings, including inpatient and outpatient settings, as well as
hospice, acute care settings, and nursing home settings. In one report, the
influence of the care setting was described comparatively. Ferrell, Ferrell,
et al. (1991) found that although caregivers assisting a patient in home hospice, a cancer center, or a community hospital did not differ in their reports
of patient pain and distress levels, those caregivers of hospice patients did
rate their own distress concerning the patients pain lower than did caregivers
for patients in the other two settings. Caregivers for hospice patients in this
study also scored lower on caregiver burden and mood disturbance.
As noted previously, some researchers have focused attention on the congruency of patient and caregiver pain-related assessments. Here attention is
focused on how incongruent assessments are related to caregiver outcomes.
When pain reports differed, caregivers reported greater strain, tension, depression (Miaskowski, Zimmer, et al., 1997), and higher caregiver distress
(Redinbaugh et al., 2002). Greater incongruence in assessing the patients
self-efficacy for pain and symptom management was associated with higher
strain reported by caregivers (Porter et al., 2002).
Research Question 5: What interventions, if any, have been effective in
helping family caregivers with pain management?
Pain management, especially in the rapidly changing status that often
characterizes advanced cancer, remains complex and challenging. Several
interventions to respond to caregiver needs have been developed and evaluated. Most nursing interventions to improve pain management have focused
on patients. However, in four of the intervention studies included in this
review, the researchers worked with caregivers as well as with patients with
the intent of enhancing the caregivers knowledge and skills for participating
in cancer pain management. As noted by Lin et al. (2006), When a family
member has correct knowledge about analgesics, that individual becomes a
more accurate spokesperson and better carer for homecare cancer patients
51
Meeker et al.
and can help healthcare workers monitor and evaluate the effectiveness of
pain management (p. 278). One of the studies retrieved focused intervention
efforts exclusively on the needs of caregivers (McMillan et al., 2006).
The earliest intervention study in our review (Ferrell et al., 1995) used a
quasi-experimental design to assess patient and caregiver variables pre- and
post-intervention. The four other intervention studies utilized experimental
design, though for one (Wells et al., 2003) the first component of the study,
assessing patient and caregiver knowledge and beliefs before and after a brief
educational program, utilized a quasi-experimental design with pre- and postmeasures for all participants.
Format for the interventions ranged from a single half-hour educational
session delivered in a clinic setting (Lin et al., 2006; Wells et al., 2003) to a
series of three home visits with provision of pain management knowledge
and/or skills training (Ferrell et al., 1995; Keefe et al., 2005; McMillan et al.,
2006). The clinic-based interventions focused on the importance of reporting
pain and utilizing analgesics (Wells et al., 2003) and decreasing common barriers to pain management (Lin et al., 2006). Wells et al. (2003) provided the
educational component to all participants and then assessed for effectiveness
of adding a patient pain hot line or provider-initiated follow-up phone calls.
These shorter educational interventions were effective in correcting some
common caregiver barriers to pain management.
Two of the longer, home-based interventions addressed the complex needs
of caregivers for hospice-eligible patients. Keefe et al. (2005) provided a
rigorously conducted and monitored intervention with 3-hr-long sessions.
During this intervention, the caregiver and patient were trained together in
pain management and coping skills and provided with opportunities for
supervised behavioral rehearsal. In addition, the partner was taught how to
coach the patient in using coping skills and was given supervised time to
practice. This intensive intervention demonstrated increased self-efficacy for
caregivers and a stabilizing effect on caregiver strain.
Also working in a hospice setting, McMillan et al. (2006) compared
caregiver outcomes for three groupsusual hospice care, hospice care plus
supportive visits, and hospice care plus training in problem-solving skills
with which to respond to patient symptoms. Only the addition of intentional
problem-solving training was effective in decreasing caregiver distress
related to symptoms and in improving caregiver quality of life.
Thus, various educational and skills training interventions have demonstrated
the ability to influence important caregiver variables. Findings have included
improved knowledge of pain management (Ferrell et al., 1995), increased caregiver self-efficacy in pain management (Keefe et al., 2005), enhanced
52
Discussion
Barriers to effective cancer pain management exist in the knowledge, beliefs,
and attitudes of cancer patients and their family caregivers; in the skills and
behaviors of health care professionals; on the level of institutional practice and
policies; and in government policies and regulations (Ingham & Foley, 1998).
This review was designed to focus on pain and pain management in cancer
patients from the perspective of the family caregiver. Studies published more
recently than the scope of this review (Docherty et al., 2008; Lentz & McMillan,
2010; Tsigaroppoulos et al., 2009) continue to validate the persistence of problems for caregivers related to pain management and the adverse effects of pain
on both patient and caregiver quality of life (Smith et al., 2010). Understanding
and reducing barriers affecting family caregivers can improve caregiver outcomes as well as increase the potential for a positive effect on professional level
barriers through the advocacy efforts of caregivers and on patient level barriers
through caregivers interactions with the patients they assist.
This review includes studies that employed different methodologies,
focused on patients in various stages of the disease, and were conducted in
different countries. However, it is clear that pharmacological management
of pain is challenging for caregivers across various cultures and contexts of
care. Little attention has been given to the utilization and effectiveness of
nonpharmacological interventions that caregivers may be less fearful of providing and that may be more aligned with some cultural beliefs. In addition,
little attention has been focused on those caregivers who are doing well in the
area of pain management. Caregivers who experience ease and success could
inform us about helping caregivers who are challenged.
In the United States, much of the study of family caregiving related to pain
management has been conducted with Whites with relative neglect of minority
53
Meeker et al.
54
55
Meeker et al.
that includes the active ingredients identified in this review. Recognizing the
key role of caregivers, such a manual should also reinforce the importance of
attending to their own health and well-being.
It has been more than 22 years since the Agency for Healthcare Research
and Quality released the Cancer Pain Guidelines (2005), but achieving the
goal of relieving cancer pain has yet to be realized. We have the opportunity
to move more quickly toward comprehensive pain relief by assisting caregivers in their pain management role. Understanding and responding to the
needs of family caregivers will enable clinicians to positively influence quality of life and quality of care for both patients and their caregivers.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the authorship
and/or publication of this article.
Funding
The author(s) received no financial support for the research and/or authorship of this
article.
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Bios
Mary Ann Meeker, RN, DNS, is assistant professor at the School of Nursing,
University at Buffalo, The State University of New York. Her clinical and research
interests are in palliative care and end of life decision-making with a focus on the
needs of family members. Related publications include Meta-Synthesis: Withdrawing
Life-Sustaining Treatments: The Experience of Family Decision-Makers appearing
in Journal of Clinical Nursing (with Jezewski) and Family surrogate decisionmaking at the end of life: Seeing them through with care and respect appearing in
Qualitative Health Research.
Deborah S. Finnell, DNS, RN, is assistant professor at the School of Nursing,
University at Buffalo, The State University of New York. She is a psychiatric mental
health nurse practitioner holding certification in that specialty as well as addictions
nursing at the advanced practice levels. She is a nurse scientist affiliated with the VA
Center for Integrated Healthcare, Upstate New York. She is also a VA nurse fellowship at the Buffalo, Virginia. Her clinical and research interests focus on the development, testing, and dissemination of interventions to promote health behavior change
in individuals with mental illness and/or substance-use disorders. Recent publications
include Patient choice decision making in substance abuse treatment appearing in
Alcoholism: Clinical & Experimental Research (with Lee), Health diaries for selfmonitoring and self-regulation: Applications to individuals with serious mental illness
appearing in Issues in Mental Health Nursing (with Ditz), and Stages-of-Change for
psychotropic medication adherence and substance cessation appearing in Archives
of Psychiatric Nursing (with Osborne).
Areej K. Othman, RN, PhD, completed her doctoral studies at the School of
Nursing, University at Buffalo, The State University of New York and is now a member of the Faculty of Nursing for the University of Jordan. Her research interests are
in womens health, and she is currently studying breast cancer screening among
Jordanian women.