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Family Caregivers

and Cancer Pain


Management:
A Review

Journal of Family Nursing


17(1) 2960
The Author(s) 2011
Reprints and permission: http://www.
sagepub.com/journalsPermissions.nav
DOI: 10.1177/1074840710396091
http://jfn.sagepub.com

Mary Ann Meeker, RN, DNS1,


Deborah Finnell, RN, DNS, NPP1,
and Areej K. Othman, RN, PhD2

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

University at Buffalo, the State University of New York


University of Jordan, Amman

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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30

Journal of Family Nursing 17(1)

Cancer remains a major health problem, affecting 11,714,000 Americans


(American Cancer Society, 2010), and is the second leading cause of death
(Agency for Healthcare Research and Quality, 2005). Incidence of cancer
pain increases over the course of the illness. The prevalence of pain in patients
undergoing cancer treatment is reported at 59% for patients who have metastatic disease and at 64% to 75% for patients who are in the terminal phase of
the illness (Swarm et al., 2010; van den Beuken-van Everdingen et al., 2007).
More than one third of those patients rate their pain as moderate to severe
(van den Beuken-van Everdingen et al., 2007), suggesting significant interference with daily activities and impairment of their quality of life. An estimated 28% of patients experiencing pain related to advanced cancer die in
unrelieved pain (Sela, Bruera, Conner-Spadu, Cumming, & Walker, 2002).
Despite scientific and pharmacological advances in pain management, unrelieved pain continues to be a significant problem for many patients with cancer and thus for their family caregivers (Paice, 2010).
Cancer pain is a multidimensional experience with sensory, cognitive,
and affective components and an experience that affects the physical, psychological, social, and spiritual dimensions of patients and caregivers lives
(Fink & Gates, 2010). As the majority of cancer care is provided on an outpatient basis, patients and their caregivers are primarily responsible for executing pain management regimens (Docherty et al., 2008; Ferrell, 2001).
Even when appropriate medications are prescribed by knowledgeable and
skilled health care providers, how effectively a cancer patients pain is managed ultimately depends on the knowledge and attitudes of patients and
caregivers as well as on their skills in implementing and supervising prescribed regimens, safeguarding a medication supply for patients at home,
and their joint ability to solve complex and ever-changing problems (Mehta,
Cohen, Carnevale, Ezer, & Ducharme, 2010a; Schumacher, Koresawa,
West, Hawkins, et al., 2002).
The experience of caring for a family member in pain profoundly affects
the caregivers well-being, and the caregivers effectiveness in helping with
pain management affects the well-being of the patient. In this article, we
explore the state of the science to reveal what is now known about pain management by family caregivers and to generate direction for what is yet needed.
This review was guided by the following research questions: (a) What are the
demographic characteristics of the family caregivers whose pain management experiences have been studied? (b) How do family caregivers participate in cancer pain management? (c) What attributes characterize or influence
family caregivers role in pain management? (d) What is known about the
effects of family participation in cancer pain management for the patient and

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31

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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32

Journal of Family Nursing 17(1)

The primary research reports included 5 intervention studies and 30 reports


of 28 descriptive studies. The included studies are listed in Table 1.
More than half21 of the 35 studieswere quantitative, cross-sectional,
and descriptive in nature. Experimental studies represented the smallest proportion of the set of studies (5 of 35) and only one was longitudinal (Lin,
Chou, Wu, Chang, & Lai, 2006). There were nine qualitative descriptive
studies.
Qualitative study samples ranged from as few as 9 (Berry, 2007; Mehta &
Ezer, 2003) to as many as 90 caregivers (Schumacher, Koresawa, West,
Dodd, et al., 2002). These samples provided sufficient data to yield meaningful descriptions of the experiences and perspectives of caregivers. Sample
sizes for the quantitative descriptive survey studies ranged from 18 to 159
caregivers. These studies are limited because of their cross-sectional nature
as well as employing convenience samples. However, these studies yield
important information about the beliefs, knowledge, attitudes, skills, and
abilities of caregivers related to pain management. Interventions were
assessed using samples of 50 dyads (Ferrell, Grant, Chan, Ahn, & Ferrell,
1995) to 78 dyads (Keefe et al., 2003) and 329 caregivers (McMillan et al., 2006).
The sample sizes for the randomized controlled trials (Keefe et al., 2005; Lin
et al., 2006; McMillan et al., 2006; Wells, Hepworth, Murphy, Wujcik, &
Johnson, 2003) were adequately powered to detect differences between
groups and differences between pre- and posttest scores for the single group
examined by Ferrell et al. (1995).
Epistemological and theoretical foundations for the research included in
this review varied. Four studies were guided by the conceptual model developed by Ferrell and colleagues that describes the effect of pain on holistic
quality of life (see Ferrell, Rhiner, Cohen, & Grant, 1991). Although many
studies did not explicitly describe the theoretical framework, the most frequently noted conceptual underpinnings were a focus on barriers to pain
management (11 quantitative reports; 3 qualitative) and a focus on congruence of pain assessments (7 quantitative reports). Among the nine qualitative
descriptive studies, one (Berry, 2007) was guided by symbolic interactionism
and another (Mehta & Ezer, 2003) by Victor Frankls work related to the
search for meaning. See Table 1 for an overview of conceptual and theoretical foundations for the included studies.
The manner in which disease status was reported was not uniform across
studies. Only three studies had specific disease-related inclusion criteria.
Therefore, the following descriptive categories were formed to allow comparison across studies as shown in Table 1: disease status not reported; patient

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Purpose

5 Elliott, Elliott,
Murray,
Braun, and
Johnson
(1996)

Design

Sample

Qualitative
descriptive

Barriers Questionnaire

Terminally ill

Cross-sectional 122 dyads


survey

Reported
pain

Metastatic
disease;
opioid
analgesia

(continued)

Brief Pain Inventory; pain


beliefs and responses
(instrument not
identified); Profile of
Mood StatesShort
Brief Pain Inventory;
Eastern Cooperative
Oncology Group
Performance Status;
knowledge and attitudes
(investigator developed)

Interview guide

Barriers Questionnaire4
of 7 subscales were used

Caregiver measures

Reported
pain

Disease
status

9 CGs of nursing Terminally ill


home patients

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

Investigate relationship Portenoy-Melczak


theoretical model
of knowledge and
attitudes to pain
reports

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)

Table 1. Features of Included Studies

34

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Purpose

Conceptual/theoretical
underpinnings
Design

Sample

6 Ferrell, Ferrell, Describe family


factors influencing
Rhiner, and
cancer pain
Grant (1991;
same sample
as study
No. 8)

Ferrells holistic model Cross-sectional 85 CGs in


3 settings:
of quality of life
survey using
4 quantitative home hospice
(n = 30),
measures
cancer center
plus
(n = 30),
interview
community
hospital
(n = 25)
50 CGs
Ferrells holistic model Quasi 7 Ferrell, Grant, Identify outcomes
of quality of life
experimental
of cancer pain
Chan, Ahn,
(pretest,
education for family
and Ferrell
posttest)
members
(1995)
Ferrells holistic model Qualitative
85 CGs in
8 Ferrell, Rhiner, Describe CGs
of quality of life
descriptive
3 settings:
perspective and
Cohen, and
home hospice
experience of cancer
Grant (1991;
(n = 30),
pain
same sample
cancer center
as study
(n = 30),
No. 6)
community
hospital
(n = 25)
10 triads
Ferrells holistic model Exploratory
9 Ferrell, Taylor, To examine the pain
recruited from
of quality of life
qualitative
experience from
Grant,
home care
descriptive
the perspective of a
Fowler, and
agencies
triad (patient, family
Corbisiero
CG and the home
(1993)
care nurse)

Authors (date)

Table 1. (continued)

Quality of Life tool; Family


Pain Questionnaire;
Caregiver Burden Tool
Interview guideFamily
Pain Survey7 openended questions

Interview guide

Opioid
analgesia

Unspecified
analgesia

Opioid
analgesia

(continued)

Profile of Mood States;


Caregiver Burden Scale;
Family Knowledge
& Attitudes about
Pain (developed by
investigators)

Caregiver measures

Unspecified
analgesia

Disease
status

35

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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)

Cross-sectional 151 caregivers


survey;
instrument
development

Focus on barriers to
pain management

22 patients and
16 CGs

Qualitative
descriptive

Impaired
communication as
a barrier to pain
management

CGs self-efficacy in pain


management; Profile
of Mood StatesB;
Caregiver Strain Index

Pain assessment with 0-10


Linear Analogue Scale

Caregiver measures

Terminally ill

(continued)

Caregiver Pain Medicine


Questionnaire
(developed from Barriers
Questionnaire)

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

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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

Cross-sectional 159 dyads of


Focus on barriers to
survey
oncology
pain management;
outpatients in
focus on patient/
Taiwan
caregiver congruence

Conceptual/theoretical
underpinnings

37

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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)

Profile of Mood States


Reported
(Short Form); Caregiver
pain; plus
Strain Index; Medical
a pain-free
Outcomes Study Shortcomparison
Form General Health
group
Survey

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

Not specified, implied


stress, and coping
framework

19 Madison and
Wilkie
(1995)

20 McMillan et al. Assess a coping skills


(2006)
intervention for
CGs

Conceptual/theoretical
underpinnings
Focus on barriers to
pain management

Purpose

Compare patient and


CG perceptions of
pain and associated
factors

Authors (date)

Table 1. (continued)

38

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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

Pain VAS; Profile of Mood


States; Caregiver Strain
Index; Medical Outcomes
Study Short-Form Health
Survey

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

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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

Investigate influence of Illness Beliefs Model,


Calgary Family
family dyadic beliefs
Assessment &
about controllability
Intervention Model
of cancer pain on
patient symptom
distress and
subjective CG
burden
PRO-SELF Pain
Assess usefulness
28 Schumacher,
Control Program
of a daily pain
Koresawa,
management diary
West, Dodd,
et al. (2002)

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

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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

Phase 1: quasi- 64 dyads


experimental
(education
program);
Phase 2:
experimental
( access
to further
information).

(continued)

Family Pain Questionnaire

Barriers Questionnaire

46 caregivers for Not reported Barriers Questionnaire;


Family Pain
cancer patients
Questionnaire
receiving home
care

Sample

Cross-sectional 35 dyads;
hospice
quantitative
patients
survey

Descriptive,
crosssectional
survey

Design

41

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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

Pain Experience Scale

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

Journal of Family Nursing 17(1)

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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43

Meeker et al.

are White females with an average age of 56 years in a spousal relationship


and who are fairly well educated. The needs and experiences of minority
caregivers have been understudied.
Research Question 2: How do family caregivers participate in cancer
pain management?
As would be expected from the purpose for this review, the belief that family caregivers participate importantly in pain management was a foundational
assumption by all researchers for the included studies. According to Oldham
and Kristjanson (2004), Family carers consistently identify pain management as their primary concern in relation to the care and support of a loved
one with advanced cancer (p. 91). Only two reports indicated how many caregivers were involved in pain management and/or the extent of their involvement. In their study of family caregivers for patients with advanced cancer,
Aranda and Hayman-White (2001) reported that 67% of the family caregivers
were involved in pain management. Yates et al. (2004) reported that 95% of
caregivers in their study of Australian families with cancer outpatients participated in pain management; 70% rated their involvement as moderate to a lot.
Of the descriptive studies, 13 explicitly identified pain management functions of family caregivers. Across this set of studies, caregivers reported
being involved in offering or administering pain medications and with the
multiple accompanying decisions. Caregivers communicated with both patients
and providers about pain management. They discussed pain and related fears
and concerns with the patient, and they reported pain and sought help from
health care providers.
Research Question 3: What attributes characterize or influence caregivers role in pain management?
In exploring the role of family caregivers in cancer pain management,
researchers have primarily investigated the following attributes of the caregivers: caregiver knowledge of pain management, their beliefs and attitudes,
and the congruence of caregiver and patient reports of pain. These attributes
are believed to reflect characteristics influencing the caregiving process and
experience.

Knowledge, Beliefs, and Attitudes


The pain-related knowledge, attitudes, and beliefs of family caregivers interface with the inherent complexity of cancer pain management, sometimes

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exacerbating the difficulties encountered. Eleven reports describe caregivers


knowledge levels and/or beliefs and attitudes described as barriers.
Assessments of caregivers pain management knowledge have consistently
revealed knowledge scores in the range of approximately 55% to 60%.
Yeager, Miaskowski, Dibble, and Wallhagen (1995) found a mean knowledge level of 57.3 (out of 100) for family caregivers. Another study
(Redinbaugh, Baum, DeMoss, Fello, & Arnold, 2002) using the same Family
Pain Questionnaire reported a mean caregiver knowledge score of 54.7, and
Vallerand, Collens-Bohler, Templin, and Hasenau (2007) found a mean
knowledge score of 6.29 (employing a scale of 1-10). Similarly, Australian
family caregivers self-rated their knowledge of pain management, including
knowledge of medications, dosages, side effects, and how to respond to
unrelieved pain on average at 5.6 on a 10-point scale (Yates et al., 2004).
Thus, across those studies caregiver knowledge is not at an optimal level
regardless of the measure used.
Family caregivers frequently subscribe to various myths and succumb to
various fears about pain management with opioid medications. Using the
Barriers Questionnaire, several researchers (see Table 1) assessed the extent
to which caregivers endorsed common concerns and inaccurate beliefs
about pain management. The eight concerns assessed by this tool are fears
about side effects, addiction, tolerance, and the discomfort of injections;
belief in inevitability of pain with a cancer diagnosis; belief that it is wrong
to complain about pain; fear that raising the issue of pain will distract the
provider from the primary task of disease treatment; and fear that an increase
in pain signals progression of the disease.
Use of the Barriers Questionnaire across studies allows some comparative
evaluation of the scope of the problem. Ward et al. (1996) found that 62% to
100% of caregivers reported some agreement with each of the eight beliefs,
whereas those who strongly agreed with each ranged from 3% to 43%. On
this tool, those who strongly agreed with an item were expressing a higher
level of the barrier. Caregivers expressed greatest concern about opioid side
effects, addiction, and injections, and the perception that the meaning of
increased pain was related to progression of the disease (Berry & Ward, 1995;
Ward et al., 1996). In a later study that also used the Barriers Questionnaire
(Vallerand et al., 2007) 45.5% to 93.6% of caregivers indicated some agreement with each of the barriers, whereas a small percentage (up to 15.3%)
endorsed strong agreement. Areas of greatest concern remained the same,
except that fear of injections was less frequently rated, probably reflecting
changes in pharmacotherapy and movement away from intramuscular injections. Responding on a different tool to assess attitudes and concerns related

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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

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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

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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?

Patient Outcomes Related to Family Pain Management


In this section, we will address what has been learned about the effects on
patients of family participation in pain management. We identified only one
study in which patients were asked about their satisfaction with the assistance
their family caregiver provided. Dar et al. (1992) reported that participants
were highly satisfied with their spouses help, and for 40% of the sample, pain
was decreased in the presence of the spouse and unchanged for the others.
Seven studies addressed relationships between caregiver barriers and
patient pain management. Accurate caregiver knowledge and attitudes were
associated with reports of lower patient pain (Aranda et al., 2004; Berry &
Ward, 1995; Elliot & Braun, 1996; Letizia et al., 2004; Lin, 2000), suggesting that when caregivers are increasingly free of common attitudinal and
belief barriers, they may be better able to assist the patient in achieving effective pain relief. In one study, caregiver knowledge and attitudes, in combination with patient functional status, explained 38% of the variance in caregiver
reports of patient pain (Elliot & Braun, 1996). Similarly, using a different
measure of caregiver concerns, Letizia et al. (2004) reported that higher concerns were related to caregiver reports of patient pain being less well controlled.

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However, in that study, higher caregiver concerns were found to not be


related to the patients own report of pain.
Incongruent assessments of pain (between patient and caregiver) were
related to more negative conditions for patients (Miaskowski, Zimmer,
Barrett, Dibble, & Wallhagen, 1997). Variables associated with incongruent
pain assessments included higher level of least pain experienced (i.e., the
patients best pain relief was less adequate), greater frequency of pain, higher
levels of anger and fatigue, and lower quality of life. Congruent beliefs in
the controllability of pain were related to patients lower symptom distress
(Riley-Doucet, 2005).
Keefe et al. (2003) found that caregiver self-efficacy for pain management
was positively related to measures of patient well-being, including energy
levels and decreased time spent in bed. However, caregiver self-efficacy for
pain management did not show a significant relationship to patients pain
level as assessed by the Brief Pain Inventory. In summary, higher caregiver
knowledge, lower barriers, congruence of pain assessments, and caregiver
self-efficacy are associated with improved patient outcomes as reported by
the patient and/or the caregiver.

Caregiver OutcomesEffects of Pain


Experience on Family Caregivers
In this section, we addressed what is known about the effects on caregivers
of observing the family members pain experience and assisting with pain
management, identified differences between care settings, and the consequences for caregivers related to incongruent pain assessments. Qualitative
data have provided compelling descriptions of the human experience of caring for a family member with cancer pain and eloquently reveal the suffering
and distress engendered by seeing a loved one in pain (Ferrell, Rhiner, et al.,
1991). Feelings of helplessness (Ferrell, Ferrell, et al., 1991; Ferrell, Rhiner,
et al., 1991; Ferrell, Taylor, Grant, Fowler, & Corbisiero, 1993; Oldham &
Kristjanson, 2004) wishing for death (Ferrell, Ferrell, et al., 1991; Ferrell,
Rhiner, et al., 1991), frustration and exhaustion (Ferrell et al., 1993; Oldham
& Kristjanson, 2004) have been reported. Some described spiritual distress
arising from seeing the family members suffering (Taylor, Ferrell, Grant, &
Cheyney, 1993). Fears described by caregivers included lack of confidence
in their own knowledge and skill to assess pain and to identify the appropriate medication and dose, and concern that they were creating unintended
effects or contributing to the patients death (Kimberlin, Brushwood, Allen,

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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

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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

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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

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perception of various aspects of caregiver quality of life (Ferrell et al.,


1995; McMillan et al., 2006), decreased caregivers perception of symptom burden (McMillan et al., 2006), decreased distress related to patient pain
(Ferrell et al., 1995), and decreased attitudinal barriers to analgesic use (Ferrell
et al., 1995; Lin et al., 2006; Wells et al., 2003).
Evidence from this small set of intervention studies reveals that provision
of pain management education can improve caregiver knowledge and decrease
attitudinal barriers. Skills training for assisting the patient and for problem
solving can positively affect caregivers self-efficacy, quality of life, and burden. Clarification of relationships between enhanced caregiver outcomes and
patient pain management awaits further study.

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

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groups. Correcting this neglect is an urgent need because of persisting racial


and ethnic inequities in pain management (Anderson et al., 2000; Bonham,
2001). Rates of undertreatment of pain were three times greater in settings that
predominantly cared for minority patients, as compared with nonminority settings (Cleeland et al., 1994). Among minority cancer patients, severity of pain
was underestimated by physicians for 74% of the African American
patients (Anderson et al., 2000). Furthermore, because cultural values and
beliefs affect how caregivers assist ill family members (Ayalong, 2004), interventions tested with primarily White patients may be ineffective and
inappropriate with other groups.
Family caregivers for cancer patients can beneficially be regarded as being
care recipients themselves and simultaneously as coproviders (along with clinicians) of health care. Pain management is a high profile instance of this dual
role, generating both unique demands and significant responsibilities for the
caregiver. As noted by Grieco (1996), caregivers needs are distinct from
those of patients: patients and family members have dissimilar needs for education and counseling, and if this axiom is not recognized, the needs of both
parties might remain unmet (p. 1). The unique caregiver needs suggest that
interventions to facilitate pain management could profitably be designed specifically for caregivers. As noted above, caregivers have expressed the need to
have their role recognized and their unique needs addressed by clinicians.
However, providers continue to pay little attention to either the family caregivers needs or his or her potential positive contribution toward management
of the patients pain. Using the Cancer Pain Medicine Questionnaire, Oliver et
al. (2008) documented that hospice family caregivers continued to experience
barriers to pain management and that concerns increased over time as the
patient moved toward death. Researchers in this study noted very limited
attention to the family caregiver in pain discussions during hospice interdisciplinary team meetings. This neglect is surprising, given that hospice care is
deliberately family focused. Encouragingly, these team meetings were noted
to offer a currently underutilized opportunity to facilitate improved outcomes
related to pain concerns for both patients and caregivers. By including the
family caregiver in team meetings through use of videophone technology,
pilot study findings suggest that this may be an effective approach to decrease
caregiver barriers to good pain management (Oliver et al., 2010).
Given the high levels of complexity and specificity of individual pain
management regimens, provision of knowledge alone is often insufficient.
Recent, theory-generating qualitative inquiry (Mehta, Cohen, Carnevale,
Ezer, & Ducharme, 2010b; Mehta et al., 2010a) provides a more detailed
understanding of the complex and often simultaneous processes undertaken

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by family caregivers as well as influential contextual elements. Qualitative


inquiry led Lau et al. (2009) to describe an alternate, but compatible conceptual rendering of the diverse skills necessary for caregivers to assist with pain
management. Understanding the caregivers experience in these ways will be
beneficial in the creation of effective interventions to support and facilitate
the pain management work of family caregivers.
As improved pain assessment congruence is related to better status for both
patients and caregivers, promoting more open communication about the pain
experience could be a promising intervention strategy. When patients and
caregivers congruently believed that cancer pain could be controlled (RileyDoucet, 2005), patients reported lower levels of symptom distress, suggesting
a synergistic positive effect of accurate beliefs and congruence in the patient
caregiver dyad. Often, discrepant caregiver responses have been regarded as
inaccurate, revealing an attitude of inherent distrust toward the caregiver.
For example, Fine and Busch (1998) state that caregivers need to be educated in how to match their perceptions with what is actually occurring in
those for whom they are caring so that preventive and therapeutic interventions can be optimized (p. 182). The authors of this review believe that congruency issues provide information on how caregivers perceive the patients
pain experience and how they describe their own responses to the patients
pain. Family caregivers can provide clinicians with another valid view of
the patients pain. Given that both patients and caregivers experience barriers
to pain reporting, perceptions reported by caregivers can promote fuller
understanding of the complex pain management situation.
Collectively, the reviewed studies point to potential active ingredients for
assisting caregivers who are struggling to be effective managers of cancer
patients with variable pain. Clearly, interventions need to address the attitudes, beliefs, knowledge, and behaviors of the caregiver. Fear of addiction
to opiates is a pervasive concern of caregivers contributing to unmanaged
pain in cancer patients. Thus, educational interventions for caregivers need to
dispel the myths associated with the use of analgesics to promote more effective pain management. Strategies to increase self-efficacy are also important,
such as assisting caregivers to develop problem-solving skills and promoting
open communication with providers as well as with the patient.
Acknowledging the vital role caregivers play in the patients pain management is essential. Support for caregivers and other measures to enhance pain
relief that were not addressed in this review include stress management and
nonpharmacological pain management. Given the stress associated with
24-hr, 7-day-a-week responsibility, caregivers may value having a manual

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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.

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