Support for Caregivers of Cancer Patient.docx

Support for Caregivers of Cancer Patients: Transition After
Active
Treatment
Barbara A. Given, Paula Sherwood and Charles W. Given
Cancer Epidemiol Biomarkers Prev 2011;20:2015-2021.
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Support for Caregivers of Cancer Patients: Transition After
Active Treatment
Barbara A. Given1, Paula Sherwood3, and Charles W. Given2
Abstract
Family caregivers provide uncompensated care and assistance to
a family member who has cancer. When
patients move through the care trajectory into the survivorship
phase, roles and demands of caregivers change
and caregivers assume responsibility to assist with coordination
of ongoing care. The goal of this article is to
describe aspects of caregiver experiences and the roles of
caregivers as patients transition from active cancer
treatment into the first and early phase of cancer care. Residual
problems for patients and caregivers remain for
some period of time. Cancer Epidemiol Biomarkers Prev;
20(10); 2015–21. �2011 AACR.
Introduction
Family caregivers are individuals who provide uncom-
pensated care or assistance to a family member who has
cancer. This care goes beyond the usual family activities,
such as household chores. Research has documented the
negative effects of providing care to someone who has

cancer. Family caregivers are at risk for developing side
effects such as fatigue and sleep disturbances (1), lower
immune functioning, slower wound healing, higher blood
pressure, and altered lipid profiles (2, 3). Positive effects of
providing care have also been reported such as rewards,
self-esteem, support, uplifts, and satisfaction, which may
provide a buffer to the residual negative effects of care-
giving (4–6). Caregivers report life changes, appreciation
of life, acceptance, reprioritization of values, increased
self-confidence, stronger interpersonal relationships,
and strengthened spirituality (7–9). Most research, in
oncology, has focused on caregivers’ reactions to provid
ing care during active treatment or at the patient’s end of
life. However, care activities, and thus the negative effects
of providing care, do not end with the completion of the
patient’s active treatment.
Although more than 65% of cancer patients now sur-
vive for more than 5 years, quality-of-life issues for
patients and their families continue even after active
treatment ends (10, 11). When patients move through the
care trajectory into the survivorship phase, roles and
demands of caregivers change and caregivers assume
responsibility to assist with coordination of ongoing care,
cine, College of Human Medicine, Michigan State University,
East Lansing,
Michigan; and 3University of Pittsburgh, School of Nursing,
Pittsburgh,
Pennsylvania
Corresponding Author: Barbara A. Given, College of Nursing,
Michigan
State University, B515C West Fee Hall, East Lansing, MI
48824. Phone:
517-355-6526; Fax: 517-353-8612; E-mail: [email protected]

doi: 10.1158/1055-9965.EPI-11-0611
�2011 American Association for Cancer Research.
Authors' Affiliations: 1College of Nursing, 2Department of
Family Medi-
but, as research shows, care needs remain for a large
number of patients (12–14). Preparing the family member
for the transition into survivorship is a vital part of the
provider’s role. Access to the health care system for
assistance decreases after active treatment. Issues such
as slow or nonresolving symptoms and side effects, resid-
ual limitation in physical function, and adherence to
ongoing medication and follow-up care remain The
patient’s adjustment to the survivorship phase can affect
the role (15). On the basis of assessments of the patient’s
posttreatment needs, information and support can be
provided and appropriate referrals for continuing care
may be made. Return to primary care providers for
ongoing care may be the posttreatment expectation or
there may be a shared care approach with both primary
care and oncology providers involved with the posttreat-
ment care.
The goal of this article is to describe aspects of caregiver
experiences and the roles of caregivers as patients transi-
tion from active cancer treatment into the early survivor-
ship phase of cancer care, which may be the first year or
two. The focus is on the group of patients who have care
needs and prior to any return to active treatment. The team
for effective transition cancer care for patients and their
caregivers involves not only physicians and nurses but
may also include dieticians, nutritionists, physical thera-
pists, case workers, social workers, and psychologists
(16, 17). Family caregivers continue to be concerned about

patients but have their own transitions as well. Finally,
dyads should be aware that the end of active treatment
does not signal return to precancer existence (18).
Transition for Patients and Caregivers
Posttreatment
When active treatment ends, caregivers are often
responsible for coordinating care with a new set of care
activities and with differing resources, as patients shift
from the oncology team as their primary source of support
back to their primary care providers. New information
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CEBP FOCUS
and skills are vital for the transition to early survivorship,
yet caregivers often receive little help and guidance to
maximize patients’ recovery and reintegration into their
previous roles and patterns. Unfortunately, transition
care is often fragmented, uncoordinated, and without an
analysis of services based on needs of the patient, their
recovery, and the sequela and posttreatment toxicities or
the late effects of cancer treatment.
The need for caregiver involvement following active
patient treatment may continue for several years, as
patients have residual symptoms, late effects, and dis-
ability (13, 14, 19). Caregiver activities, roles, and
demands during posttreatment depend on the residual

impact and the treatment the patient has received as well
as the long-term expectation of survival and outcome of
treatment (13, 14, 20–22). From our work, we have found
that 60% of 143 patients who were from 2 to 6 weeks
posttreatment reported substantial problems (23). These
problems included depression scores above 16 on the
Center for Epidemiologic Studies Depression Scale, 3
symptoms with a severity score above a threshold of 4
on a 10-point scale, 2 or more comorbid conditions, and a
physical function score of the 36-Item Short Form Health
Survey in the mid to high 60s. For the most part, these
characteristics persisted 6 weeks later. Together, the data
indicate that the proportion of patients leaving treatment
with residual problems is substantial and poses a chal-
lenge for their family caregivers. This transition period
causes caregivers to adapt to an ongoing or new set of
patient care needs with uncertainty about the patient’s
future (13, 14, 24, 25). For some patients, there is disease
progression or recurrence, or a second cancer that further
complicates the disease trajectory. For others, treatment
continues for the duration of the patient’s life, with
treatment-related side effects left to the patient and
family to manage. Unfortunately, there has been little
research examining family caregivers in the early tran-
sition/survivorship period (20, 22, 26, 27).
Multiple factors can affect how family caregivers
respond emotionally and physically to changes in the
patient’s treatment and thus changes in care demands.
The relationships depicted in this article as well as the
cyclical nature of the care situation are supported within
the Adapted Pittsburgh Mind Body Center Model (28). In
this model, both patient characteristics (e.g., the patient’s
functional ability) and caregiver characteristics (e.g., the
availability of social support and gender) affect care-
givers’ emotional responses to providing care (e.g.,

depressive symptoms, anxiety, and burden). These emo-
tional responses, in turn, may alter biological responses
(initiating and prolonging the physiologic stress
response), which ultimately lead to poor overall health.
The cyclical nature of the model is vital to understanding
caregiver demands and health as patients transition out of
active treatment into the survivorship phase. During this
transition, patient characteristics will change (e.g.,
changes in symptom severity) and new care demands
may arise (e.g., surveillance for symptom recurrence).
Reintegration Following the End of Treatment
The caregiver’s "new normal" or reintegration following
the cancer experience will vary depending on the patient’s
disease trajectory. One patient may have a well-controlled
disease with maintenance therapy, whereas others expe-
rience progressive, residual symptoms such as fatigue or
pain (29), or the risk for late treatment effects. In each of
these scenarios, both patients and family caregivers must
adapt to this new phase often with less direct care from
oncology health care professionals.
For caregivers, tasks during the patient’s transition
from active treatment turn to monitoring and surveil-
lance of late effects, recurrence, and/or disease progres-
sion. In addition, caregivers coordinate care by making
and keeping medical appointments and continue to
maintain insurance and billing paperwork. When the
active treatment ends, patients may be transferred from
cancer specialists to primary care providers. Often
there is a disconnect between providers, and fragment-
ed care may ensue. Frequently, family caregivers
become responsible for the coordination of care during
this period. Primary care providers prefer not to man-
age ongoing cancer-related issues but instead prefer to

focus on issues such as routine screenings and treating
comorbid conditions (30).
Caregivers often have fears about recurrence and the
future, a sense of loss of control, and anxiety about lack
of contact with oncology practitioners. Caregivers cen-
tered their life activities around providing care, adjust-
ing their schedules and relinquishing valued personal
activities. When the treatment is over, they may have a
difficult time restoring these activities, as the relation-
ships may no longer exist; friends, social support, and
opportunities may have moved on (4, 31). Both patients
and caregivers may have reintegration problems in
resuming social relationships, establishing communi-
cation patterns, dealing with problems involving
family and children, and financial and employment
difficulties (32, 33). Caregivers’ routines must be
reorganized and reprioritized to compensate for the
long-term impact that cancer and treatment have had
on the family (33, 34). Caregivers want to return to
"normal" and resume their lives but must often estab-
lish a new normal. Reintegration to "normal life" may
be difficult, as both patients and family caregivers try
to move forward with their lives. Caregivers may have
neglected their own health problems and need to
resume screening for age/sex-appropriate conditions,
management of their own chronic conditions, or
resume healthily lifestyle activities such as exercise
regimens or better diets. For employed caregivers,
renewing attention to jobs and reestablishing relation-
ships with co-workers may be important. Evidence
from the caregiving literature indicates that family
members may have difficulty withdrawing from care-
giving roles, particularly for those who have become
enmeshed in caring (17).

2016 Cancer Epidemiol Biomarkers Prev; 20(10) October 2011
Cancer Epidemiology, Biomarkers & Prevention
Support for Caregivers of Cancer Patients
Caregiver/patient needs during transition
It is important to assess the care at the transition phase
and then find strategies to support caregivers who remain
involved. Caregivers’ needs, resources, and capabilities
will be influenced by multiple factors such as gender, age,
culture, education, economics, and geographic location.
Residual effects from disease and treatment, late effects,
altered household and family roles, along with altered
communication patterns adopted during treatment,
remain a source of anxiety for caregivers as they seek to
reinstate work and secondary roles (5, 35). Caregivers
assist patients with persistent symptoms, emotional dis-
tress (anxiety, fears, worry, and depression), medical
problems, social needs, need for information, and coor-
dination of care services (14, 21, 36). In addition, economic
and financial stressors are common after active treatment
due to the high cost of cancer care or loss of employment
for either the patient or the caregiver (20, 24, 37, 38). Some
targeted therapies and biological agents may costs more
than $60,000 to $100,000 per year, and insurance coverage
varies for these agents. Caregivers report using financial
resources, selling homes, taking out loans, and even
declaring bankruptcy as a result of expensive care (39).
Continued involvement of caregivers following
transition
Although caregivers report unmet needs decreasing

after active treatment, they also cite that some needs
remain even at 5 years (14). One study reported that
60% of caregivers had at least one unmet psychosocial
need at 2 years after active treatment and 36% still claimed
unmet needs at 5 years. The prevalence of medical support
needs was 49% at 2 years and 28% at 5 years (14). On
average caregivers provided 8.3 hours per day of care for
13.7 months after "active treatment," which varied by
cancer diagnosis and caregiver education. Caregivers
whose financial needs were not met reported poorer
mental health at 2 years and the prevalence of financial
unmet needs was 27% at 2 years and 19% at 5 years (14, 21).
Unmet needs often take the form of assisting patients
with residual symptoms such as pain, fatigue, cognitive
issues, sleep disturbance, and depression. Late effects
such as lymphedema, cardiac changes, pulmonary fibro-
sis, constipation, diarrhea, incontinence, and/or anorexia
also occur (4, 11, 29, 40, 41). The severity of patients’
functional impairment or disability can increase care
demands and restrict caregiver activities (7). As the num-
ber and/or severity of long-term late effects increase and
the patient becomes more dependent, the caregiver’s level
of distress may increase (4, 42). Family members continue
to be patient advocates, interacting with the health care
system to obtain information and support services, as well
as to negotiate with the system.
Health promotion
Caregivers may forego their own health needs to focus
on providing care during active treatment (11). Health
care professionals need to encourage caregivers to return
to usual activities and maintain their own physical and
mental health. Healthy living and lifestyle recommenda-

tions for nutrition, exercise, and stress management
should be provided. Health-promoting behaviors and
how current distress affects both the long-term health
and well-being of caregivers need to be examined. The
prevalence of the unhealthy behaviors such as limited
physical activity, poor nutrition, obesity, alcohol con-
sumption, and smoking among family caregivers in the
survivorship phase is not well established (11). Both
patients and caregivers should be guided to return to a
healthy lifestyle.
In one of the few studies in this area, Beesley and
colleagues (11) followed caregivers of ovarian cancer
patients over approximately 3 years following their cancer
diagnosis to examine current health patterns and weight
changes. More than half of the caregivers did not meet
physical activity guidelines, and 71% were overweight;
40% ate less than 2 servings of fruit, and 80% less than 5
servings of vegetables. Beesley and colleagues also
reported that 37% consumed alcoholic drinks and 10%
were smokers. Fifty-six percent reported more than one
negative change in lifestyle, 42% decreased physical activ-
ity, and 35% gained weight since the patient’s diagnosis.
Caregivers reported more unhealthy behaviors when they
had fewer years of education, were limited in daily activ-
ities, or reported high levels of depressive symptoms (11).
Beesley and colleagues did not have a comparison group,
but they argue that in their study, changes occurred to a
greater extent in subgroups with increased physical and
emotional demands (11), suggesting that the change in
behaviors were not normal changes of aging.
Consideration of the caregiver’s health maintenance,
physical activity, nutrition, stress management, smoking
cessation, chronic disease management, and comorbid
conditions is important during the transition phase. Care-

givers may experience changes in physical health, which
can be complicated by their own comorbid conditions
(4, 14), particularly if they are physically inactive (43).
Follow-up care by primary care providers is vital.
Difficulty in family relationships may add to the dis-
tress of caregivers during the posttreatment phase. Pre-
existing discordance in family relationships may be aggra-
vated and manifest after active treatment (33, 38, 43).
Among caregivers in less mutually satisfying relation-
ships, any residual or late effects may cause negative
responses (31, 44). Caregivers may need guidance and
counseling, enabling them to return to effective relation-
ships. There is some evidence that benefit finding evolves
from the family care role and may contribute to positive
relationships (7, 9).
Communication
Caregivers often need assistance to know "how"
to communicate with their loved ones after active treat-
ment. Changes in patients’ personalities, priorities, and
attitudes caused by the diagnosis and treatment may
increase caregivers’ need to be assertive and find new
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20(10) October 2011 2017
CEBP FOCUS
communication patterns. There are supportive groups or
educational sessions that might be helpful to caregivers. A

family conference may benefit the patient, the caregiver,
and the professional’s ability to communicate (45). Web-
based toolkits may become useful to improve communi-
cation among patients, caregivers, and professionals.
These can be used to foster understanding, provide edu-
cation, and facilitate care management through commu-
nication (46, 47).
Caregiver role activities
Caregivers may be at risk for increased distress in the
transition period (13). Spouses have adapted to new roles
during active treatment, and now there is a need for
another set of role changes or adaptation that call for
changes in the demands of social, work, and other rela-
tionships (4, 48). Spousal caregivers may have had to
assume other role responsibilities for financial and house-
hold activities vacated by the individual with cancer and
may not be willing to give them up. Adult children and
other nonspousal younger caregivers often need to adjust
their lifestyle to meet more competing demands, and, in
return, exhibit lower levels of well-being (14). van Ryn and
colleagues (13) found that 67% of caregivers had at least
one competing demand that interfered with their care
role.
The loss of employment of the caregiver and/or the
patient and restrictions on health insurance due to
involvement with cancer care pose a problem that con-
tinues into the early survivorship phase. There are the
economic ramifications for the family members who have
used savings or lost their jobs during treatment. A recent
report finds higher bankruptcy roles in survival phase
(49). How families at the end of active treatment deal with
employment decisions made during active treatment may
be problematic, and continuing insurance into survivor-

ship is often a major challenge. Caregivers may find it
necessary to find a job with health benefits. Medical
insurance, Medicare, Medicaid, and Veteran’s benefits all
have restrictions to coverage that pose problems that
continue into the transition phase. In addition, if provid-
ing care affected the caregiver’s productivity, loss of
promotions and job advancement opportunities may
ensue. Caregivers (20%–30%) adapt employment obliga-
tions to manage care demands during treatment, and
there may be residual effects into survivorship (50–52).
These are usually described as missed days, interruptions
at work, numerous phone calls, leaves of absence, reduced
presenteeism, and reduced productivity (14).
Care plans should include family caregivers and should
summarize residual symptoms, potential late effects, and
future expectations needed for care coordination appro-
priate to the patient’s health and treatment status. Recom
mendations for follow-up care, cancer screening (recur-
rence or new primary), psychosocial effects, and financial
issues (work, insurance, and employment) should be a
part of the plan. In addition, recommendations for a
healthy lifestyle (for both the patient and the caregiver),
referrals for follow-up care, and a list of needed support
and community resources should be discussed. Referrals
to primary care providers for both are important. The
LIVESTRONG Care Plan or the Survivorship Care Plan as
identified in the Institute of Medicine’s publication Lost in
Transition can be the basis for the plan (16, 53). The plan
includes topics such as physical activities, nutrition, effec-
tive communication, prevention of substance abuse, stay-
ing informed, and stress management for both members
of the dyad as appropriate and based on the assessment.
Health care professionals need to assess caregivers in
particular to identify those at risk for negative outcomes

(burden or depression) in the transition phase.
Care plans should also highlight needed resources to
assist in this phase. Some caregivers have ample personal,
social, and economic resources, whereas others have few.
Many caregivers have competing demands with employ-
ment, dependent care, and their own health issues. Care
demands in this phase may differ from the active treat-
ment phase and include limited physical care, encourage-
ment of physical activity, nutrition, emotional and social
support, symptom management, and financial assistance.
van Ryn and colleagues (13) found more than 54% of
patients in survivorship in high need and thus their
caregivers were involved with clinical tasks. More than
68% focused on side effects, 47% spent time managing or
controlling symptoms, and 30% assisted with decisions
to call physicians. Unfortunately, 44% of caregivers indi-
cated that they were not trained to administer medications
and 49% were not trained to manage symptoms and side
effects, thus indicating a need for preparation (13).
Interventions that have been successful in other phases
such as cognitive behavior, problem solving, and psy-
choeducational could be adapted for this phase. Few
dyadic assessments exist and provide little guidance for
intervention. Care plans should include all care tasks that
will be needed during the posttreatment phase. Interven-
tions may be needed to support caregiver problem solv-
ing, decision making, and priority setting. Most cancer
caregiver intervention studies have used a psychoeduca-
tional intervention that emphasizes the provision of infor-
mation, problem-solving skills, and a psychologic/
counseling approach to decrease caregiver distress (22).
Interventions to increase support for family caregivers
have lagged behind those for patients. There is a dearth of
literature regarding intervention design and effectiveness

for those who have moved past active treatment but are
facing the threat of disease progression or recurrence or
for some residual or late effects (17, 54). Although there are
not clear interventions tested, consideration of caregiver
interventions for other phases can be adapted for the
needs identified.
With the advent of health care technology, consider-
ation of technology use may be of benefit to support
caregivers during this phase. Family caregivers use tech-
nology to help themselves with caregiving. Among the
two-thirds who use the Internet, the most frequent source
was for needed information or support. Caregivers
indicate that technology would be of benefit to them for
personal health record tracking, monitoring symptoms
and events, tracking or coordinating care (appointments),
and reminding to take prescription medications (55, 56).
Research
An inception cohort of caregivers is needed to examine
variations in care demands that extend from diagnosis
into the transition to survivorship, to determine if there is
a logical progression in the depth of complexity and
judgment required for tasks of caregiving. There should
be a special focus on transition points. In addition, how
care responsibilities, decision making, and knowledge
and skill change over time should be addressed. Inter-

vention studies are needed that target caregivers at risk for
negative outcomes during the transition into survivorship
and provide needed support. A cumulative set of risk
factors should be developed to identify levels of risk and
problems for caregivers and then determine how negative
caregiver responses relate to patient outcomes. Risk
assessments should include physical and emotional status
of patient and caregiver relationships, home assessment,
social, spiritual, and legal dimensions (17). Future
research should explore how including caregivers in
Survivorship Care Plan explicitly maximizes both patient
and caregiver outcomes at 1, 3, and 5 years posttreatment.
Research is needed to better describe the impact on
caregiver health that result from residual or persistent
patient symptoms (loss of voice, pain, lymphedema, sex-
ual dysfunction, or neuropathy) or the late effects, or the
types and level of care needed. Little is known about what
areas cause the greatest degree of distress or the most
lasting effect for caregivers during the care transitions and
posttreatment period. More systematic and longitudinal
follow-up of healthy patients and health promotion prac-
tice studies are needed to examine variations and changes
that occur in caregivers as they assume and relinquish the
care role. Finally, research should explore differences in
problems and perceptions of caregiver experience from
different cultural, ethnic, or socioeconomic backgrounds.
There is a noticeable absence in inclusion of diverse
populations in any of the caregiver studies of the survi-
vorship phase.
Conclusion
In conclusion, there have been studies describing the
negative responses of family members to caring for

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236 Seminars in Oncology Nursing, Vol 28, No 4 (November),

2012: pp 236-245
THE IMPACT OF CAREGIVING ON
THE PSYCHOLOGICAL
WELL-BEING OF FAMILY
CAREGIVERS AND
CANCER PATIENTS
LAUREL L. NORTHOUSE, MARIA C. KATAPODI, ANN M.
SCHAFENACKER,
AND DENISE WEISS
Laurel L. N
ard French P
gan School
Katapodi, Ph
Johnson Fou
sity of Michi
Ann M. Sch
Manager, FO
School of Nu
OBJECTIVES: To provide an overview of patient and caregiver
emotional
distress; examine the sources of their distress, review evidence-
based
interventions that can reduce distress, and provide guidelines
for assessment
and intervention.

DATA SOURCES: Peer-reviewed publications.
CONCLUSION: There is a significant, reciprocal relationship
between patient
and caregiver emotional distress. Sources of distress vary by
phase of illness.
Evidence-based interventions can reduce distress and anxiety,
but often are
not implemented in practice.
IMPLICATIONS FOR NURSING PRACTICE: Nurses need to
assess patients and
family caregivers for distress and intervene to reduce distress
by fostering
patient-caregiver teamwork, communication, and self-care;
providing
information; and referring to resources as needed.
KEY WORDS: Emotional distress, anxiety, family caregivers,
assessment,
intervention
orthouse, PhD, RN, FAAN: Mary Lou Will-
rofessor of Nursing, University of Michi-
of Nursing, Ann Arbor, MI. Maria C.
D, RN: Assistant Professor, Robert Wood
ndation –Nurse Faculty Scholar, Univer-
gan School of Nursing, Ann Arbor, MI.

afenacker, RN, MSN: Research Project
CUS Program, University of Michigan
rsing, Ann Arbor, MI. Denise Weiss, FNP,
BC: Family Nurse Practitioner, Phase I Clinical Trials,
Karmanos Cancer Institute, Detroit, MI.
Address correspondence to Laurel L. Northouse,
PhD, RN, FAAN, School of Nursing, University of Mich-
igan, 400 N. Ingalls, Ann Arbor, MI, 48109. e-mail:
[email protected]
� 2012 Elsevier Inc.
0749-2081/2804
http://dx.doi.org/10.1016/j.soncn.2012.09.006
Open access under CC BY-NC-ND license.
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http://creativecommons.org/licenses/by-nc-nd/4.0/
IMPACT OF CAREGIVING ON PSYCHOLOGICAL WELL-
BEING 237
C
ANCER affects the quality of life of
family caregivers in many ways, but
takes its greatest toll on their psycho-
logical well-being. Family caregivers
are expected to provide complex care in the
home with little preparation or support.
1
When
the demands placed on caregivers exceed their
resources, caregivers feel overwhelmed and report
high stress. The stress has a negative effect
initially on the caregiver’s psychological well-
being, but as the stress continues it can negatively
affect their physical well-being as well. The effects
of stress on the psychological domain of quality
of life appear as increased emotional distress,
anxiety, and/or depression; feelings of helplessness

and loss of control; and difficulty in coping with
caregiving roles.
2
High emotional distress reported by family care-
givers is a significant problem that needs to be
addressed for a number of reasons. First, longitu-
dinal studies indicate that when family caregivers
are highly distressed, it has a negative effect on
the patient’s long-term adjustment.
3
Over time,
a highly anxious partner can increase the anxiety
experienced by the patient.
4
Second, distressed
caregivers have more difficulty providing optimal
patient care
1
and administering medications to
patients.
5
Third, caregivers who have high distress
also have changes in their immune system that
can lead to flare-ups in auto-immune diseases,
worsened glucose control in the body, and in-
creased vulnerability to cardiovascular diseases.

6
Thesechangesincreasethelikelihoodthatthecare-
giver’s own health will suffer and, subsequently,
hinder their capacity to provide care.
To gain a broader understanding of the effects of
cancer on caregiver’s psychological well-being,
this review addresses the following: 1) provides
an overview of patient and caregiver emotional
distress, 2) examines the sources of their distress
by phase of illness, 3) reviews evidence-based
interventions that can reduce patient and care-
giver distress, and 4) provides guidelines for as-
sessing and intervening with patients and
caregivers in practice settings.
FIGURE 1. Reciprocal relationship between patient and
caregiver emotional distress. Each partner affects the other
throughout all phases of illness.
OVERVIEW OF PATIENT AND CAREGIVER
EMOTIONAL DISTRESS
For many years, it was assumed that cancer had
little effect on the well-being of family caregivers
because caregivers were not the ones diagnosed
with cancer. However, as studies examined the
impact of cancer on the family over time, health
professionals and others became more aware of
the emotional distress experienced by family
members as well as patients.
Two meta-analyses examined the emotional
distress reported by cancer patients and their family
members.

7,8
Hodges et al
8
conducted a meta-
analysis of 21 studies, with a combined sample of
1,098 patient-caregiver dyads, to determine if there
was a relationship between the distress reported by
cancer patients and their family caregivers. They
found a moderate, significant relationship between
their distress scores (r ¼ 0.35, P < .0001), indi-
cating that their emotional responses to the illness
were interrelated. When patients were distressed,
it was likely that their caregivers were distressed,
and vice versa. Hagedoorn et al
7
conducted
a meta-analysis of 46 studies that examined distress
in couples coping with cancer (N ¼ 2,468 dyads).
They found a significant correlation between
patient’s and their spouse caregiver’s level of
distress (r ¼ 0.29, P < .001), even after controlling
for illness-related factors such as the patient’s stage
of disease. Their findings suggest that couples react
to cancer as an ‘‘emotional system,’’ and that the
patient-caregiver dyad must be viewed as the unit
of care (see Fig. 1).
Even though patient and caregiver distress is
related, some investigators have questioned,
‘‘Who has more emotional distress—the patient
or the caregiver?’’ When this question was exam-
ined in two meta-analyses, investigators found

no significant difference in the amount of distress
238 L.L. NORTHOUSE ET AL
reported by patients and their caregivers.
7,8
They
also found no significant differences in their
emotional distress by phase of illness. One meta-
analysis found a tendency for caregivers to report
more distress during the treatment phase (P <
.08) when physical and emotional caregiving
demands were high, and a tendency for patients
to report more distress 1 and 2 months following
diagnosis (P < .08) as they continued to struggle
with the new diagnosis.
8
The distress reported by couples facing cancer
was compared with couples who were not facing
cancer. Investigators found that cancer patients
and their spouse/partners had significantly higher
distress than the comparison group.
7,9
Couples
facing cancer had ‘‘modestly elevated’’ levels of
distress that, on average, was below cut-off points
indicating high distress or clinical depression
on established instruments.
7

However, there is
a subgroup of patients and caregivers who do report
higher distress or more depression than others. Za-
bora et al
10
examined the distress levels of a large
sample of cancer patients (N ¼ 4,496) and found
the rate for high distress in the sample was 35.1%.
While the rate of distress ranged from a low of
29.6% (gynecological cancer patients) to a high of
43.4% (lung cancer patients), these levels of distress
are very significant. The incidence of high distress
or depression in caregivers has been estimated at
approximately 20%.
11-13
However, the incidence is
higher when patients have high symptom distress,
poor physical functioning, and advanced disease,
14
and also when caregivers report high caregiver
burden and little support from others.
14
Gender is a key factor associated with distress in
patients and caregivers. Female patients and
female caregivers report more distress than their
male counterparts.

15
Female caregivers, however,
have the highest distress of all.
16
In contrast to
male caregivers, female caregivers spend more
time providing care,
17
provide more complex
care,
17
perceive less support from others,
16
and
have more noncancer-related stress, in addition
to the stress of cancer.
16
SOURCES OF DISTRESS BY PHASE OF ILLNESS
Therearemanysourcesofemotionaldistressand
they can vary according to the phase of illness. The
sources of distress for patients and caregivers are
briefly described for the following six phases during
the cancer trajectory: 1) prediagnosis, 2) diagnosis,
3) treatment, 4) survivorship, 5) recurrent, and 6)
advanced and end of life. Table 1 highlights the
major sources of emotional distress by phase.
Prediagnosis Phase

With advances in genetic testing, more people
are learning about the possibility of hereditary
cancer in their own families. Genetic testing iden-
tifies at-risk individuals and provides them with
information about strategies they can use to lower
their risk of developing cancer, such as risk-
reducing surgery and intensive surveillance. A
recent study found that mutation carriers did
not differ significantly from non-carriers in
psychological distress at the time of test results
and at short-term follow-up. However, both groups
showed an increase in anxiety and depression
from 1 to 3 years after test disclosure.
18
There are many sources of distress for families
with hereditary cancer, such as learning about
the risk of hereditary cancer in the family,
deciding whether or not to seek genetic testing,
determining whether or not to disclose test results
to family members, and deciding how to manage
this risk if they test positive.
19
Even relatives
who test negative for a deleterious mutation iden-
tified in their family, experience guilt about
communicating their results to untested siblings,
who may still face a 50% chance of harboring the
same mutation.
20

Partners also experience distress when their
loved ones are at greater risk for rare hereditary
cancer syndromes.
21
Approximately one in three
partners (28%) had clinically relevant levels of
distress, which correlated significantly with the
distress reported by the person at risk of rare
hereditary cancer. Partners with higher distress
were generally younger than other partners and
lacked adequate social support. Enhancing family
support and family communication about cancer
risk and ways to manage it are important areas
for intervention.
22
Diagnosis Phase
Many studies have documented the emotional
distress reported by cancer patients and their
family caregivers following the diagnosis of cancer.
Findings indicate that both patients and caregivers
report shock and anxiety at the time of diagnosis.
Kim et al
23
assessed the needs of three cohorts of
caregivers who were 2 months, 2 years, and 5 years
following diagnosis. Caregivers of newly diagnosed
patients (ie, 2-month cohort) had more unmet

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BEING 239
psychosocial, medical, financial, and informational
needs than caregivers in the other two cohorts.
Younger caregivers reported substantially more
unmet needs in all domains than older caregivers.
A major concern for caregivers during this phase
is helping patients deal with emotional distress
associated with their new diagnosis of cancer. Part-
ners of breast cancer patients reported that at the
same time their lives were shattered by the cancer
diagnosis, they did not know what to do to support
their distressed wives and had to guess.

24
Spouses
often kept their worries to themselves because
they did not want to add to their wives’ burden.
Caregivers convey that helping patients to cope
with emotional distress (eg, anger, anxiety,
depression, fear, and resentment) is one of their
highest unmet needs following diagnosis.
23
Care-
givers reported less confidence helping patients
with their emotional needs, than with their phys-
ical needs.
1
Partners often want to do the ‘‘right
thing’’ but are unsure what that is. Others,
including health professionals, may erroneously
assume that family caregivers who have a close
relationship with the patient will automatically
know what to do or say. However, as research in-
dicates, family caregivers often feel unprepared
to deal with the array of intense emotions
surrounding the diagnosis. Helping patients and
caregivers to manage acute distress is a critical
need during this phase of illness.
Treatment Phase
Just after diagnosis, patients and caregivers are
confronted with new and unfamiliar treatments

for the cancer. Sources of distress during this
time are related to their worry about the patient’s
ability to tolerate the treatment, if the treatment
will be effective, and if side effects and symptoms
associated with the treatment will be manageable.
During this phase, caregivers are more involved in
providing physical care and managing treatment-
related symptoms. In a study where caregivers
were responsible for monitoring changes in the
patient’s condition and providing care, half of the
caregivers reported that they did not get the
training they needed to provide high quality
care.
1
One fourth of the caregivers were con-
cerned that their care was less than optimal.
It is not surprising that during the treatment
phase caregivers often report greater caregiver
burden and strain than they do in some of the
other phases of illness. The majority of caregivers
(67%) in a large study reported that they were the
sole providers of care and received no informal
help from others.
1
Caregivers who reported
a greater impact of caregiving on their day-to-
day schedules and social functioning, and who

felt abandoned by others, experienced more
emotional distress.
14
These caregivers are likely
to benefit from more information and support
from health professionals.
Survivorship Phase
The survivorship phase is characterized as the
time when the cancer is in remission or when
the patient is considered cured. The quality of
life of cancer survivors and their caregivers was
comparable to the normal population in two
studies of couples who were approximately 2
years
25
or 4 years post-diagnosis.
26
Survivors and
their family caregivers had normal levels of
distress
25
and depression rates that were consis-
tent with community samples.
26
Approximately
70% of the survivors and caregivers were able to

identify some positive aspect associated with their
cancer experience (eg, realizing how precious life
is, appreciating relationships).
26
A number of factors are related to a higher quality
of life in survivors and their family caregivers during
this phase. Mellon and Northouse
27
assessed the
quality of life of survivors and their family care-
givers.Survivors,randomlyselectedfromanational
cancer registry, were disease-free and approxi-
mately 3 years following diagnosis. Higher quality
of life of the family overall (combined patient-
family member scores) was associated with higher
family hardiness, more social support, greater
ability to find meaning in illness, and with the
survivor being employed at the time of the inter-
view. Lower quality of life was associated with
more concurrent stress in the family, somatic
concerns in survivors, and higher fear of cancer
recurrence in survivors and family members.
27
A universal concern during survivorship is the
fear that the cancer will recur. Family caregivers
often report more fear of recurrence than survi-
vors,
28
possibly because they interact less with

health professionals than patients, and have fewer
opportunities to obtain information that could
lessen their fears. There is a fairly strong correla-
tion between the levels of fear of recurrence re-
ported by survivors and their family caregivers,
suggesting that they mutually influence one
another’s fear.
28
Helping survivors and caregivers
to manage fear of recurrence is an important
area for intervention during this phase.
Recurrent Phase
When the cancer returns, it is a devastating time
for patients and their family caregivers. Recur-
rence shatters their hope that the cancer was
cured, and it often requires patients to receive
treatment again—which in many cases is pallia-
tive rather than curative. Studies that compared
the quality of life of patients with recurrent versus
newly diagnosed cancer report that recurrent
cancer patients have significantly lower quality
of life, more pain, more role limitations, higher
symptom distress, and a more negative appraisal
of the illness.
29
Their family caregivers report
more uncertainty, hopelessness, and adjustment
problems,
30

and a lower mental quality of life.
29
Although recurrence can be a devastating blow,
Andersen et al
31
assessed women with recurrent
breast cancer from diagnosis through 8 years
follow-up, and found that they were very resilient.
According to the investigators, these women were
knowledgeable about cancer from their initial
diagnosis, were familiar with the medical system,
and had established relationships with their
oncology staff, all of which may have lessened
their anxiety and stress at the time of recurrence.
Of the women who had a recurrence (13.5%), their
level of cancer-specific stress was equivalent to the
level of distress at the time they were initially diag-
nosed. Although survivors with recurrent disease
in this study were resilient, more information is
needed about the resilience of family caregivers
who were not assessed in this study. In other
studies, family caregivers during the recurrent
phase report higher uncertainty and fewer sources
of support than survivors.
29
It is important to note that the recurrent phase of
cancer can lead to very different outcomes in
patients and their families over time. Some survi-
vors experience long disease-free remissions, while
others face a steady progression of their cancer, in

spite of having undergone multiple unsuccessful
treatments. These two scenarios can have very
different effects on the quality of life and distress
levels of cancer patients and their family caregivers
during recurrence, and they will require different
interventions from health professionals.
Advanced and End-of-Life Phase
Advanced cancer is often characterized by high
symptom distress in patients and high caregiver
burden in their family members. Some patients
are informed that they have advanced cancer at
the time of their diagnosis, but for many patients
BEING 241
the cancer progresses to an advanced phase over
time. Researchers in one study found that care-
givers of patients with a short time interval
between diagnosis and death experienced more
symptoms of depression.
32
As the end of life approaches, caregivers in some
studies reported depressive symptoms that
equaled or exceeded thresholds for clinical
depression.
32
Sources of caregiver depression are
related to more negative family relationships,

33
including a sense of abandonment,
32
more outside
demands related to their employment, and more
symptom distress in patients.
32,34
In one study,
the majority of caregivers (71%) needed substan-
tial help with managing the patient’s symptoms,
and this need remained unmet for 43% of the care-
givers through the end of the patient’s life.
34
Care-
givers who had substantial unmet needs related to
symptom management, and difficulty obtaining
financial and community support, were more
likely to report that the patient received lower
quality of care at the end of life than caregivers
who had fewer unmet needs.
34
As the patient nears the end of life, another
concern is that the caregiver’s health may
decrease as they engage in fewer healthy lifestyle
behaviors. In a study of caregivers of patients
who had mostly advanced ovarian cancer, 42% re-
ported a decrease in physical activity, 35% gained
weight, and 12% reported an increase in alcohol

intake.
11
Caregivers who reported more distress
and more caregiving demands had more negative
changes in their health behaviors. Although this
is an area for primary prevention, few interven-
tions have been designed to help caregivers of seri-
ously ill patients to maintain their own health.
Effective interpersonal relationships among
family members, between patients and caregivers,
and with health professionals are especially
important as patients near the end of life and care-
giver burden increases. In families that are more
cohesive and have less conflict, caregivers report
less caregiver burden, in part because they are
likely to get more help from other family
members.
33
In couples with better marital rela-
tionships, caregivers have less depression and
less difficulty providing care.
35
In addition, when
caregivers have better interpersonal relationships
with health professionals, caregivers report better
health and feel less abandoned.
33
Although main-

taining family relationships is important, very
few interventions try to strengthen these relation-
ships as a key component of end-of-life care.
EVIDENCE-BASED INTERVENTIONS TO REDUCE
EMOTIONAL DISTRESS IN PATIENTS AND FAMILY
CAREGIVERS: META-ANALYSIS FINDINGS
There is evidence that interventions can reduce
emotional distress in patients and their caregivers.
One meta-analysis examined the outcomes of 29
randomized clinical trials that delivered psychoso-
cial interventions to cancer patients and their
family caregivers, or to caregivers alone.
36
The
investigators pooled the data from these 29 studies
and then analyzed it to determine if the interven-
tions had any effects on several different caregiver
outcomes. Findings from the meta-analysis in-
dicated that the interventions had a number of
positive outcomes for caregivers. They reduced
caregivers’ burden, increased caregivers’ knowl-
edge and perceived benefits of caregiving,
enhanced caregivers’ coping resources and self-
efficacy, and improved many aspects of the care-
giver’s quality of life.
The interventions reported in the 29 studies
were examined for content, dose, and delivery
format. The types of interventions were classified
into three groups: 1) psycho-educational (57.1%);

2) skills training (25.7%); or 3) therapeutic coun-
seling (17.1%). The dose of the interventions
ranged from two to 16 sessions, with the average
number being 6.7 sessions. In regard to delivery
format, two thirds were delivered jointly to
patients and their caregivers and one third to care-
givers only. Most interventions were offered in
a face-to-face format (68.6%), some were delivered
by phone (20%), and only a few in a group format
(11.3%). Two studies used a combination of face-
to-face and phone interventions. No studies used
Web-based interventions.
36
Of the 29 studies included in this meta-analysis,
16 examined the caregiver’s emotional distress or
anxiety. Findings indicated that the interventions
significantly reduced the caregiver’s emotional
distress and anxiety. Although the size of the
intervention effect was small to medium (range,
.16 to .29), the interventions had a clinically
significant effect.
36
The meta-analysis also examined the effects of
the interventions on the caregiver’s depression in
16 studies. Overall, findings from the meta-
analysis indicated no significant reduction in care-
giver depression.
36
However, this finding must be
viewed with caution because in some studies care-

givers had little depression at the start of the study,
and in other studies, caregivers who were more
depressed dropped out of the study. Similarly, in
a separate meta-analysis that examined the effect
of interventions on depression in cancer patients,
there was also no significant reduction in patient
depression.
37
Findings from these meta-analyses
suggest that it may be more difficult to reduce
depression than to reduce emotional distress and
anxiety, but this needs further research.
GUIDELINES FOR ASSESSING AND INTERVENING
WITH CAREGIVERS AND PATIENTS IN CLINICAL
PRACTICE
Although a number of research-tested interven-
tions have reduced emotional distress and anxiety
in caregivers of cancer patients, few of these
evidence-based interventions have been imple-
mented in practice settings because of a number
of challenges. Many of the effective intervention
programs were conducted as part of randomized
clinical trials that often consisted of six or more
face-to-face intervention sessions, which are diffi-
cult to implement in busy practice settings.
Furthermore, oncology nurses and others face

time constraints in practice settings. Out of neces-
sity, nurses often spend time completing physical
assessments and treatments, leaving little if any
time to address psychosocial concerns. There is
a need for more efficient ways to assess the
psychosocial concerns of family caregivers in
practice settings and to make better use of inter-
ventions and referrals.
Assessment
It is important to assess the caregiver’s concerns
on a regular basis. Such an assessment could use
a series of clinician-designed questions as illus-
trated in Table 2, or more formal assessment
instruments such as the Distress Thermometer.
38
TABLE
T-A-S-K Questions to Asses
Tools? Do you have what you need (the tools
(eg, knowledge, time, finances, outs
Able to juggle? Are you able to juggle your caregiving
Self-care? Are you taking care of yourself? (eg, t
keeping own health care appointme
Keeping spirits up? Are you keeping your spirits up? (eg, a
Caregivers who answer ‘‘No’’ to any of the above questions
may b
We developed four questions to assess caregiver

distress (see Table 2) that could be built into
a patient assessment or that could be used sepa-
rately to assess caregiver emotional distress. The
questions center on whether caregivers: 1) have
the tools to provide optimal care; 2) are able to
juggle multiple responsibilities; 3) engage in self-
care to maintain their health; and 4) are able to
keep their spirits up as they deal with the stress
associated with caregiving. There are many ques-
tions that could be used for a clinician-based
assessment, but these key questions should be
included in any assessment.
There are also established instruments to assess
emotional distress. The Distress Thermometer is
widely used and has been validated to assess
patient distress
38
and caregiver distress.
39
It has
established cut-off points that indicate when
patients or caregivers have high levels of distress
warranting professional intervention. Bevans and
Sternberg
40
identified other formal ways to screen
for distress in practice settings, such as using
anxiety and depression items from PROMIS (the
Patient Reported Outcomes Measurement Infor-
mation System).

41
The advantage of using formal
assessment tools is that they have established reli-
ability and validity and can be compared with
other normative data. Whether to use a formal
instrument or a series of questions will depend
on the clinician’s preference and nature of the
practice setting.
Interventions for Caregivers and Patients
The key approach to interventions designed to
decrease emotional distress is to treat the
patient-caregiver dyad as the unit of care. As indi-
cated in this review, there is substantial, well-
documented evidence that both patients and their
family caregivers are affected by the illness, and
each affects the other’s emotional response to it.
From a dyadic perspective, when caregiver’s needs
2.
s for Caregiver Distress
) to provide the best care possible to ____ (cancer patient)?
ide support)
responsibilities with your other day-to-day responsibilities?
aking breaks from caregiving, following healthy lifestyle habits,
nts)
ssess for sadness or depression)

e at risk for caregiver strain and psychological distress.
TABLE 3.
Interventions for Patient-Caregiver Dyads that Help Decrease
Caregiver Distress
Intervention Rationale Specific Strategies to Offer Dyad or
Caregiver
Encourage teamwork
and mutual support
Increases family bonds
Decreases stress
Improves coping
Picture yourselves as a ‘‘team’’ that is facing cancer together
Look for ways to support and help each other
Be aware of each other’s strengths and make the most of them
Express appreciation to each other
Share problems and work together to figure out solutions
Respect each other; take each other’s concerns seriously; value
each other’s opinion even if different
Don’t let cancer consume you; focus on what gives your lives
meaning and purpose

Recognize when you need outside help
Foster open communication Increases understanding and
feelings of connectedness
Decreases stress
Improves problem-solving
Talk about how things are going; share your feelings even if it’s
hard at times
Make time to talk; create a quiet setting (turn off phones and
TV)
Show you want to listen; keep your body relaxed and make eye
contact
Try to understand feelings along with words; ask if you’re not
sure
Try not to interrupt, argue or criticize
Be patient and kind with each other. Show your affection –it
costs nothing and means a lot to those
you care about.
Share your fears and worries; it makes them less overwhelming.
Then you can deal with them together
with each other’s support
Encourage

caregiver self-care
Maintains caregiver’s physical and
emotional ability to provide care
Set aside time to meet your own needs
Schedule breaks away from caregiving demands
Practice healthy lifestyle habits: sleep, physical activity,
nutrition
Keep your own health care appointments
Talk to other caregivers; consider joining a support group
Provide information Decreases stress
Reduces uncertainty
Increases caregiver competence
Obtain information to increase your knowledge and confidence
Go to patient’s appointments together and bring a list of your
questions
View online caregiver resources. Some reliable websites are:
National Cancer Institute:
http://www.cancer.gov/cancertopics/pdq/supportivecare/caregiv
ers/

Cancer Care (also available by phone: 1-800-813-HOPE [4673])
http://www.cancercare.org/tagged/caregiving
Cancer Support Community
http://www.cancersupportcommunity.org/MainMenu/Family-
Friends/Caregiving
Refer Provides additional resources
Enhances caregiver‘s capacity
to continue providing care
Expand your informal support network (family, friends,
neighbors)
Identify other people who may be able to help you
Utilize referrals to professional services:
Counseling, therapy
Social work, financial services
Spiritual care
Chore services
Hospice
IM
P
A
C

T
O
F
C
A
R
E
G
IV
IN
G
O
N
P
S
Y
C
H
O
L
O
G
IC
A
L
W
E
L
L

-B
E
IN
G
2
4
3
http://www.cancer.gov/cancertopics/pdq/supportivecare/caregiv
ers/
http://www.cancercare.org/tagged/caregiving
http://www.cancersupportcommunity.org/MainMenu/Family-
Friends/Caregiving
are not addressed, their mental and physical
health is at risk, which leads to patients not
receiving optimal care from a well-prepared, confi-
dent caregiver.
36
Table 3 lists a series of interventions that focus
on helping patient-caregiver dyads to decrease
caregiver distress, which is the primary focus of
this article. The areas of intervention are: 1)
encourage teamwork and mutual support; 2)
foster open communication; 3) encourage care-
giver self-care; 4) provide information; and 5) refer
as needed to additional resources. Specific strate-
gies to offer the dyad or caregiver in each area are
also listed in Table 3.

Because of scarce health care resources, innova-
tive ways are needed to address caregiver as well as
patient needs. The Internet, smartphones, and
Facebook are all untapped ways of providing infor-
mation and support. A large survey of caregivers in
the United States indicates that they are particu-
larly interested in using technology to gain infor-
mation and to improve the quality of patient
care.
42
Future research should determine the best
way to use technology, while at the same time
preserving important patient-family-professional
interpersonal relationships that are essential for
managing the stress associated with cancer.
CONCLUSION
This review of research confirms that cancer
can affect the quality of life of family caregivers
in many ways, but particularly in the psycholog-
ical domain. Patient and caregiver emotional
distress is evident in each phase of illness, but is
greater in some phases (diagnosis) than others
(survivorship). Although there are a number of
research-tested interventions that can reduce
the caregiver’s emotional distress, a continuing
challenge is finding ways to implement evidence-
based interventions in the practice settings. An
important first step is to assess the needs of family
caregivers to assist them in reducing their
emotional distress. The ultimate goal is for care-
givers to continue to be effective caregivers
without compromising their own health and
well-being.

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N A S W S t a n d a r d s f o r
S o c i a l W o r k P r a c t i c e w i t h
Family
Caregivers
of Older
Adults
N A T I O N A L A S S O C I A T I O N O F S O C I A L W O
R K E R S
2010
NATIONAL ASSOCIATION
OF SOCIALWORKERS
750 First Street, NE
Suite 700
Washington, DC 20002-4241
202.408.8600
SocialWorkers.org
N A S W S t a n d a r d s f o r
S o c i a l W o r k P r a c t i c e w i t h

Family
Caregivers
of Older
Adults
Contents
5 Introduction
7 Background
9 Goals of the Standards
10 Definitions
14 Guiding Principles
18 Standards for Social Work Practice
18 Standard 1: Ethics and Values
21 Standard 2: Qualifications
22 Standard 3: Knowledge
25 Standard 4: Cultural and Linguistic Competence
27 Standard 5: Assessment
30 Standard 6: Service Planning, Delivery, and Monitoring
32 Standard 7: Advocacy

33 Standard 8: Collaboration
35 Standard 9: Practice Evaluation and Improvement
37 Standard 10: Documentation
39 Standard 11:Workload
39 Standard 12: Professional Development and Competence
41 References
44 Resources
47 Acknowledgments
National Association of Social Workers
James J. Kelly, PhD, ACSW
President
Elizabeth J. Clark, PhD,ACSW, MPH
Executive Director
Family Caregiving and Social Work
Practice Standards Working Group
Amy Berman, BS, RN
Patricia Brownell, PhD, MSW
Rita Choula, BS
Catherine A. Clancy, PhD, LCSW
JoAnn Damron-Rodriguez, PhD, LCSW
Sandra Edmonds Crewe, PhD,ACSW, MSW
Lorraine Hedtke, LCSW, PhD
Forrest Hong, PhD, LCSW, C-ASWCM
Jamie Huysman, PsyD, LCSW
Phyllis Mensh Brostoff, CISW,ACSW, CMC
Nora O’Brien-Suric, MA, PhD-c

Susan Reinhard, PhD, RN, FAAN
Miriam Sterk, LCSW, C-ASWCM
Cynthia Stuen, DSW/PhD,ACSW, LCSW
NASW Staff
Tracy R.Whitaker, DSW,ACSW
Chris Herman, MSW, LICSW
©2010 National Association of Social Workers.
All Rights Reserved.
5
Introduction
The aging of the population presents social,
economic, and political implications for families,
the social work profession, and the global
community. Social workers, other professionals,
and the public increasingly recognize that
advanced age is a time of continued growth and
that older adults contribute significantly to their
families, communities, and society. At the same
time, many individuals face multiple
biopsychosocial challenges as they age: changes
in physical and cognitive abilities; barriers to
accessing comprehensive, affordable, and
high-quality health and mental/behavioral
health care; decreased economic security; lack of
affordable, accessible housing; increased
vulnerability to abuse and exploitation; and loss
of meaningful social roles and opportunities to
remain engaged in society. These challenges
often affect entire families, who struggle to

provide physical, emotional, financial, and
practical support to their aging members.
According to the Institute of Medicine (IOM)
(2008), “Family members, friends, and other
unpaid caregivers provide the backbone for
much of the care that is received by older adults
in the United States” (p. 241)—care valued, for
the year 2007, at approximately $375 billion
(AARP, 2008). Yet, their role is “often
underappreciated” (IOM, p. 263), and many
family caregivers support their loved ones at
significant cost to their own physical, emotional,
and financial well-being (National Alliance for
Caregiving, 2009).
76
Numerous studies have indicated that the need
for services for older adults, including social
work, will increase exponentially as the
population ages (IOM, 2008; U.S. Department
of Health and Human Services, 2006; Whitaker,
Weismiller, & Clark, 2006). At the same time,
strengthening relationships between family
caregivers and health care practitioners benefits
both caregivers and older adults (IOM).
Social workers interact with family caregivers of
older adults not only throughout the network of
aging services and across the health,
mental/behavioral health, and long-term care
continuum, but also in diverse settings such as
child welfare agencies, employee assistance

programs, faith-based organizations, housing
programs, schools, and veterans’ service
programs. With its strengths-based,
person-in-environment perspective, the social
work profession is well positioned and trained to
advocate for and support family caregivers of
older adults (NASW, 2009). These standards are
designed to enhance social work practice with
family caregivers of older adults and to help the
public understand the role of professional social
work in supporting family caregivers.
Furthermore, although the challenges of caring
for an older adult may differ in some ways from
those of caring for a younger person living with
illness or disability, the standards may also be
useful in informing social work practice with
families caring for younger people.
Background
During the past decade, consumer advocacy
groups, health professional organizations, and
government agencies have paid increased
attention to the role of family caregivers in
supporting older adults and to the needs of
family caregivers. As a result, health care
professions are focusing on their own ability to
train members of their respective disciplines and
to contribute to the building of a knowledge
base for excellence in gerontology and in
supporting family caregivers. Social work is no
exception. The Council on Social Work
Education (CSWE) developed a guide,
Advanced Gero Social Work Practice (2009),
which links gerontological social work
competencies to

� Specific practice behaviors, outlined in
CSWE’s 2008 Educational Policy and
Accreditation Standards (EPAS), that are
common to all social work practice
� Knowledge in aging for generalist practice
� Advanced gerontological social work
knowledge and practice behaviors
The guide also identifies course exercises,
assignments to measure student attainment of
gerontological social work practice behaviors,
and research articles providing evidence-based
social work practice. Content specific to family
caregiving is included in the document.
Social workers, nurses, family caregiver
advocates, and other experts in family caregiving
met in 2008 to identify the knowledge and skills
social workers and nurses need to support family
98
caregivers of older adults. This invitational
symposium, State of the Science: Professional
Partners Supporting Family Caregivers, was
developed under a grant from the John A.
Hartford Foundation to the AARP Foundation.
Meeting proceedings were published and widely
disseminated in both The Journal of Social Work
Education (Kelly, Brooks-Danso, & Reinhard,
2008) and The American Journal of Nursing
(Reinhard, Kelly, and Brooks-Danso, 2008).

Building on this foundation, the National
Association of Social Workers has developed
Standards for Social Work Practice with Family
Caregivers of Older Adults. The standards reflect
core elements of social work practice with, and
on behalf of, family caregivers and are targeted
toward social workers who address family
caregiving needs in various professional settings.
For many social workers, these standards
reinforce current practices. For others, they
provide objectives to achieve and guidelines to
assist in practice.
Goals of the Standards
These standards address family caregiving for
older adults as an expanding field of knowledge
for social workers. The standards are designed
to enhance social workers’ awareness of the
skills, knowledge, values, methods, and
sensitivity needed to work effectively with family
caregivers.
Ideally, these standards will stimulate the
development of clear guidelines, goals, and
objectives related to family caregiving and
gerontology in social work practice, research,
policy, and education. The specific goals of the
standards are
� To inform social workers about family
caregiving as an expanding field of social work
knowledge
� To improve the quality of social work services

provided to family caregivers of older adults
� To provide a basis for the development of
continuing education materials and programs
related to family caregiving
� To ensure that social work services to family
caregivers of older adults are guided by the
NASW Code of Ethics (2008)
� To advocate for family caregivers’ right to
self-determination, confidentiality, access to
supportive services, and appropriate inclusion
in decision making affecting older adults
� To encourage social workers to participate in
the development and refinement of public
policy, at the local, state, and federal levels, to
support family caregivers of older adults
1110
Definitions
Social worker
Within the United States, social worker refers to
an individual who possesses a degree in social
work from a school or program accredited by
the Council on Social Work Education.
Although all 50 states and the District of
Columbia license or certify social workers,
licensure and certification laws vary by state.
Each social worker should be licensed or

certified, as applicable, at the level appropriate
for her or his jurisdiction.
Family, family caregiver, and family system
The terms family and family caregiver refer to
family of origin, extended family, domestic
partners, friends, or other individuals who
support an older adult. These individuals may
cross the lifespan from childhood to advanced
age; together, they constitute the family system.
For the most part, family caregivers support
their aging family members without financial
compensation, although some family members
may receive remuneration for their services
through consumer-directed programs. However,
for purposes of these standards, family does not
include individuals whose primary relationship
with the older adult is based on a financial or
professional agreement.
In some families, an older adult designates one
individual as a primary caregiver or decision-
maker, or an individual voluntarily assumes such
a role. In many families, different individuals
assume responsibility for a variety of caregiving
tasks. For example, an adult daughter may assist
an older parent with financial matters; a son
may be designated to make health care
decisions; a spouse or partner may help with
activities of daily living; a grandchild may help
with grocery shopping; a niece or nephew may
take an older relative to religious services; and a
neighbor may provide transportation to
appointments. For still other families, caregiving

and decision-making roles are not clearly
defined—or there may be a discrepancy between
defined roles and day-to-day fulfillment of such
responsibilities.
The importance of assessment of family
caregiving roles notwithstanding, for the
purposes of these standards the term family
caregiver is not limited to individuals with either
well-defined or assumed primary caregiving
roles. The term is also not restricted to
individuals who self-identify as caregivers,
because many family members do not identify
with this label even though they support an
older adult in one or more of the ways outlined
in the next definition.
Family caregiving
Family caregiving may include a variety of
supports and services that enhance or maintain
older adults’ quality of life:
� Emotional, social, and spiritual support
� Assistance with decision making related to
health care, financial matters, and lifespan
planning
� Assistance with physical tasks, such as
bathing, dressing, or walking
� Support in navigating and negotiating health
and social service systems, such as dealing
with health and long-term care insurance,
arranging and overseeing paid helpers in the

1312
home, communicating with health care
professionals, or advocating for quality care
and services
� Assistance with practical matters, such as
housekeeping, processing paperwork, or
going to medical and other appointments
� Financial support, including direct financial
assistance and help with bill-paying
� Shared housing
Caregiving may occur on an intermittent,
part-time, or full-time basis. It includes support
provided both from a distance and in an older
adult’s home or other setting. For the purposes
of these standards, the term caregiving refers to
the supports and services provided primarily on
a voluntary basis, not to professional or
contractual services—such as social work or
home health aide services—that are provided for
a fee to the public.
Culture
Culture has been described as “the integrated
pattern of human behavior that includes
thoughts, communications, actions, customs,
beliefs, values, and institutions of a racial, ethnic,
religious, or social group” (Cross, Bazron,
Dennis, & Isaacs, 1992). Cultural identification

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