PSYCHOSOCIAL FACTORS IN PATIENTS WITH CHRONIC KIDNEY DISEASE

Couples Coping in Response to Kidney Disease:

Blackwell Publishing, Ltd.

A Developmental Perspective
Christina B. Gee,* George W. Howe,*† and Paul L. Kimmel‡
Departments of *Psychology and †Behavioral Sciences, and ‡Department of Medicine, Division of Renal
Diseases and Hypertension, George Washington University, Washington, DC

ABSTRACT

In this article we suggest that the treatment of patients with ability to cope with the disease (e.g., emotional support, conflict,
end-stage renal disease (ESRD) should be informed by three sexual functioning). We briefly review the existing literature in
developmental perspectives. In addition to the changes in the each area and argue that integrating all three perspectives will
progression of the illness and its treatment demands over time, facilitate the long-term treatment success and patient’s adjust-
clinicians should consider psychosocial changes and challenges ment to the illness. Finally, we discuss the implications for the
related to the developmental life stage of the patient (e.g., development of prevention and treatment interventions with
retirement) and the evolution of the patient’s romantic relation- patients and their spouses or partners and the importance of
ship along a variety of dimensions that may affect his or her considering ethnic and cultural variations in treatment.

In the past decade medicine has moved more and more renal failure (CRF), uremia, and end-stage renal disease
toward consideration of the progressive nature of disease, (ESRD) (1). Recently the National Kidney Foundation
treatment, and long-term adjustment. In this article we build has staged chronic kidney disease (CKD) according to the
on this emerging developmental perspective to discuss magnitude of proteinuria and diminution in glomerular
how family factors, particularly those involving intimate filtration rate (2). In this article we will focus on ESRD.
adult relationships, contribute to successful long-term In the United States, approximately 20 million people are
treatment of patients with kidney failure on dialysis. We estimated to have CKD (3), and more than 300,000 have
suggest that successful treatment needs to be informed ESRD (4). Three major treatment approaches exist for
by three developmental perspectives, reflecting how the ESRD: renal transplantation, center-based hemodialysis
illness and its treatment change over time, how the involve- (HD), and home-based peritoneal dialysis (PD). In this
ment of the patient evolves over the course of the illness, article we focus primarily on couples facing dialysis
and how the patient’s relationship with his or her spouse treatment, modalities that comprise the overwhelming
or partner evolves and shapes the long-term course of treat- majority of patients in the ESRD program in the United
ment and adjustment to the illness. Clinically all three States (4).
perspectives must be integrated as the physician and End-stage renal disease develops at a higher rate in
treatment team is faced with a patient who has treatment men than women (4). More than 90,000 patients started
needs for the specific phase of the illness, who has developed ESRD therapy in 2001. About 54% were men (4). More
a set of responses and means of coping with treatment than 90% were treated with HD. Less than 10% were
demands, and who is a member of a couple that has evolved treated with PD. Almost 98% of new ESRD patients start
ways of working together to balance treatment demands therapy with dialysis. The number of prevalent ESRD
with other demands and goals of daily life. patients in 2001 was more than 400,000. Almost 55%
were men (4) and 72% of the prevalent patients were
treated with dialysis. Almost one-third of the population
Phases in the Course and Treatment of Kidney has a functioning renal transplant (4). The number of
Disease prevalent dialysis patients at the end of 2001 was more
than 290,000. More than 90% of them were treated with
Kidney disease progresses through five stages: loss of HD. The number of incident cases and the incident ESRD
renal reserve, chronic renal insufficiency (CRI), chronic rate is lower for women than men. The prevalent ESRD
rate per million is lower for women than men, adjusted
for race, age, and ethnicity.
Address correspondence to: Christina B. Gee, PhD,
Department of Psychology, George Washington University, Data from the U.S. Renal Data System (USRDS)
Washington, DC, or e-mail: Cgee@gwu.edu. Dialysis Morbidity and Mortality Study (DMMS) waves
Seminars in Dialysis —Vol 18, No 2 (March–April) 2005 1–3, an intensive longitudinal collection of demographic,
pp. 103–108 biochemical, psychosocial, and treatment data from a

Address correspondence to: Christina B. Gee, PhD, Department of Psychology, George Washington University, Washington, DC, or e-mail: Cgee@gwu.edu.
103
104 Gee et al.
cohort of patients in the early 1990s, show that 48–55.4%
of the ESRD HD patient population is married and 15.6–
19.3% of the population is single (5). Between 16.2%
and 19.2% of the ESRD population are widowed, and
between 3.4% and 4.3% are separated. Preliminary
analyses reported in abstract form suggest married HD
patients have improved survival rates compared with
single patients (6).
End-stage renal disease appears to progress through
distinct stages, described as onset, initial treatment,
maturity, and dying and death (17). Cohen (8) suggests
that onset and initial treatment are experienced as a
period of crisis and change by patients and their families,
requiring major readjustments in daily living over the
course of 6 months to 1 year. The most elderly patients,
and those with most comorbid conditions, have increased
1-year mortality rates. The initial phase is followed by a
chronic living phase lasting from 2 to 5 years, or for a
smaller proportion of the population, a longer period of
time, followed by a “downward health spiral” that may
last for a number of years. Treatment burdens become
more pronounced during the final phase, as the patient’s
health becomes more compromised.
Adult and Couples Development
Kidney disease, particularly in its later stages, is a dis-
ease of middle and later adulthood. In 2003 in the United
States, the median age of the prevalent ESRD population
was 58 years, and patients between 45 and 64 years of
age accounted for the majority of incident cases, with a
smaller, but substantial percentage also being between
65 and 74 years of age (5).
It is important to consider the psychological and social
dimensions of ESRD within this context (9). During this
period of life, the patient and the patient’s family are
likely to be involved with a particular set of life tasks.
Children of patients will be moving through adolescence
and into early adulthood, and parenting tasks involve more
monitoring and negotiation, and less direct discipline or
structuring of children’s activities. However, given the rates
of divorce in the United States, it is possible that a number
of patients will be in relationships that are relatively new.
Work life involves the consolidation and maintenance
of existing jobs or careers, as well as planning for and
transitioning to retirement. This is also a key period of
income generation, when the financial costs of maintain-
ing a household may be at their greatest and retirement
savings are most likely to be accrued.
Relationships with spouses or partners also evolve
during these years. Marriage can be a source of solace
and support, or may provide an arena for conflict, anger,
depression, and dissatisfaction. Many couples will have
developed stable ways of providing emotional support
for one another, meeting needs for companionship and
shared recreation, negotiating conflict, and satisfying
sexual desire. Also they will have developed ways of
coordinating the other tasks of daily life, including
parenting, work demands, and the balance of work and
family life. There is likely to be substantial variability in
how particular couples approach these tasks and in their
satisfaction with these arrangements. This suggests that
clinicians who provide long-term treatment to ESRD
patients need to attend to issues of relationship duration
and the developmental changes that occur as relation-
ships evolve over the course of the illness (1,9,10).
The Intersection of Disease, Treatment, and
Couples Functioning
End-stage renal disease places the individual at risk
for a number of problems related to physical health and
psychological health. Mortality rates for ESRD are high,
with most patients dying of cardiovascular or infectious
diseases (4). Noncompliance with treatment regimens (e.g.,
skipping or shortening sessions) predicts mortality (11,12).
Therefore studies of predictors of compliance are abundant
in the literature (13,14).
The onset of ESRD will have a great impact on quality
of life and the emotional well-being of both patient and
partner to the degree that it challenges the couple’s
capacity to carry out tasks of daily living (9,10). Some of
these tasks involve basic relationship qualities, including
providing emotional support, regulation of conflict and
invalidation, and sexual functioning. Others involve more
pragmatic issues pertaining to changes in employment
functioning and adjustment to the demands of medical
treatment. We will briefly address the research on each of
these issues.
Emotional Support
Variation in the emotional support that couples provide
one another is associated with both emotional and medical
outcomes in ESRD. Emotional support is perhaps best
defined as the expression of messages that the other partner
is cared about, valued, and seen in positive terms. Higher
perceived support from the patient’s entire network,
as well as from the patient’s family, is associated both
concurrently and prospectively with increased life satis-
faction and reduced depression for the patient (15–17),
and with decreased risk of mortality (11,18). However,
Rosenblatt (19) failed to confirm associations of emotional
support and differential mortality outcome in patients
with diabetes mellitus and ESRD. This group may have
different psychosocial and medical risk factors compared
with nondiabetic patients with renal disease. Kimmel
et al. (20) found greater marital satisfaction was associated
with decreased patient depression and lower mortality
risk in an African American sample, but only for female
patients.
Emotional support in couples usually involves a pattern
of reciprocal support, and it is often not possible to dis-
entangle the effects of support toward the patient and
support toward the spouse or partner. The emotional
reactions of both patient and partner can be strongly
related (21,22), and this may reflect a pattern of recipro-
cal support. Rideout et al. (23) found that greater support
from the patient was strongly related to less depression
in the spouse. McClellan et al. (24) found that higher
levels of support the patient provided to other family
members were associated with reduced mortality. This is
 COUPLES COPING IN RESPONSE TO KIDNEY DISEASE
consistent with research on aging populations showing
that provision of support can be more generally protective
than receiving support (25). These findings suggest that a
more detailed assessment of reciprocal support, particu-
larly between patients and spouses or partners, may yield
valuable information regarding protective factors for HD
patients. Moreover, patient gender should be considered,
given reported gender differences in social support (20)
and life satisfaction (26).
Conflict and Invalidation
Couples also vary on the extent to which they engage
in conflict and behavior that communicates devaluing
messages, including contempt, criticism, and hostility.
We are aware of only one study that has focused on cou-
ples conflict. Kimmel et al. (20) found that higher levels
of conflict were associated with increased mortality risk
in their sample of African American patients, but only for
women. Given the substantial literature demonstrating the
impact of conflict and devaluing behavior on marital satis-
faction, marital dissolution, and individual depression in
other populations (27–29), further research on this aspect
of relationships is clearly called for in ESRD populations.
Sexual Functioning
End-stage renal disease patients are at increased risk
for sexual dysfunction due to many factors, including
neuropathy, prescribed medications, and uremia (30–
36). Clinical case reports suggest that changes in sexual
functioning may be associated with problems in patient
self-esteem and reduced physical and emotional intimacy
in couples (37). Sexual problems, including lower sexual
satisfaction, lower frequency of intercourse, and specific
dysfunctional symptoms, are associated with patient, but
not partner, depression in at least one study (38). Studies
have failed to find associations between sexual dysfunc-
tion and marital discord or relationship satisfaction (30,38),
although sample sizes in these studies have been small. A
small study suggested dialysis patients who had a greater
level of sexual dysfunction had more marital difficulties
than transplant patients (39). Normative research on aging
populations indicates that sexual functioning continues
to be important into later life for many couples (40),
reinforcing its relevance for ESRD patients and their
partners across the long-term course of treatment.
Employment Functioning
End-stage renal disease patients are clearly at risk
for difficulties in obtaining and maintaining gainful and
meaningful employment. Data gleaned from the DMMS
(41) suggest that although almost 42% of patients
were employed before starting dialysis, only 21.1% were
employed at initiation. Only 6.6% were employed 1 year
later. The authors note the extent of follow-up data
collected by the USRDS may have been incomplete.
Data from one national study indicated that the odds
ratio for labor force nonparticipation in those with
renal dysfunction was 7.94 (42). The treatment regimen
requirements and accompanying symptoms may require
105
reorganization of family roles and responsibilities (9).
For example, if the patient has been the primary “bread-
winner,” physical symptoms and the treatment regimen may
result in an increased financial burden if the patient can
no longer work at the same job or has to reduce work time.
A reduction in ability to maintain employment is
likely to be associated with reduced income and a greater
financial burden over time (43). In the general popula-
tion, job loss and extended unemployment are strongly
and consistently associated with an elevated risk for
both depressive symptoms and major depressive episodes
(28,44), and with increases in couples’ conflict and invali-
dation (44,45), providing indirect evidence that disrupted
employment and concomitant financial burden are likely
to decrease the quality of life both directly and through
disruption of relationship quality. Rideout et al. (23), in
one of the few relevant studies, found that financial
stressors were associated with depressive symptoms in
spouses of ESRD patients.
In addition to the stress and financial burden of ESRD
patient unemployment, the caregiver may have to leave
his or her job in order to care for the patient (46). Early
retirement may lead to disappointment and resentment
on the part of the spouse and may remove them from
social networks that could buffer against the burden of
dealing with the disease (47).
Medical Treatment Demands
End-stage renal disease patients often require a great
deal of assistance from a caregiver, who is often a spouse
or partner (6,9,13,21,48–50). Therapeutic regimens can
involve HD treatments in the home or in a treatment cen-
ter three times each week, with each session lasting up to
4–5 hours. In either situation, stress may be experienced
by a significant other who either assists with transporta-
tion to the center or with the HD treatment in the home.
Regardless of the method, treatments for ESRD can
be disruptive to the daily schedule of patients and their
caregivers. Maintaining the treatment regimen may result
in heightened levels of stress and caregiver burden
(21,48,50). There may also be a high level of stress for
the spouse who understands the mortality implications
of ESRD treatment, as well as for the spouse who takes
responsibility for the treatment itself (9).
There is some limited research on caregiver burden
among spouses of ESRD patients. Lowry and Atcherson
(46) performed early studies on and reviewed data from
other programs regarding depression, anxiety, and marital
problems in spouse assistants of home HD patients. A
study of ESRD transplant candidates found that although
quality of life was significantly related to caregiver
burden and self-reported health, the majority of caregivers
reported low caregiver burden (49). In contrast, using a
sample of chronic HD patients, Belasco and Sesso (48)
found that caregivers reported significant impairments in
quality of life in a number of dimensions. These findings
highlight the importance of considering the disease stage
and the role of successful transplantation in examinations
of caregiver strain.
Research on gender differences in perceived caregiver
burden among older persons caring for impaired spouses
106 Gee et al.
suggests that the experience of caregiving differs between
men and women. While some research suggests that women
experience more overall caregiver burden than men (51),
other research has failed to demonstrate differences
(49,52). However, some research suggests that there
may be gender differences along specific dimensions of
caregiver strain (52). For example, husbands experienced
more emotional strain when the caregiving duration was
shorter, possibly because the situation is more stressful
when they are unfamiliar with caregiving tasks. In addi-
tion, among caregivers of ESRD patients, the physical
health (52) and mental health (48) of the caregiver have
been found to be associated with levels of perceived bur-
den. Therefore, a multidimensional assessment of gender
differences in caregiver burden as well as an assessment
of caregiver physical and mental health may be useful in
understanding ways to assist couples in their adjustment
to the stress of the medical regimen.
Further, as patients get older, they are at greater risk
for loss of their partner due to age-related illnesses. The
loss of a partner can be difficult at any age; however, for
an ESRD patient this may also mean the loss of a primary
caregiver. In addition, caregivers may experience more
strain as they age if they are in poor health or lack the
ability to perform caregiving responsibilities (52). Thus
clinicians may need to discuss caretaking contingencies
with their clients and work to involve other family mem-
bers such as adult children or siblings in the planning
process in order to reduce caregiver burden and ensure a
continuum of care for the patient.
Ethnic and Cultural Variation
Ethnic differences may affect the patient’s experience
in the disease process, as well as the coping mechanisms
employed. In the United States, African Americans and
Native Americans have higher rates of ESRD than
Caucasian and Asian Americans (4). Thus it is incumbent
upon clinicians developing interventions for coping with
ESRD to understand how cultural factors may impact
risk and protective processes. For example, the tendency
for Native Americans to hold a more fatalistic view of
the world in which they believe that people have little
control over what happens to them (53) may lead them to
be less compliant with their HD regimen.
According to the U.S. Department of Commerce (54),
African American women are more than twice as likely
to have never married as their Caucasian counterparts.
Similarly, Native Americans are more likely than the
general population to be unmarried (53). However, both
the Native American and African American populations
tend to have strong affiliations with extended family and
often live with them in the same household (55). Keeping
these family structure issues in mind, clinicians should
invite the patient to involve a nonmarital partner or
extended family in discussions of treatment and treat-
ment compliance (56).
Reflecting the higher rates of female-headed households,
African American and Native American populations are
also more likely than Caucasians to be living in poverty
(53,54). Stress associated with poverty may exacerbate
the stress associated with the treatment regimen and
potential loss of income due to the illness (56). Several
small, preliminary studies have suggested spouses of
different genders from different cultural and ethnic
backgrounds may be at differential risk (20,50,57).
Implications for Prevention and Treatment
Couples that have been in a supportive and stable
relationship will have had the opportunity to develop a
communal coping style that will help them weather the
stress and changes associated with dialysis treatment.
On the other hand, couples that have failed to develop a
positive and supportive relationship may be at risk for
further relationship deterioration as a result of disease-
related stressors (58). However, clinicians may have the
opportunity to intervene early to prevent relationship dis-
tress and dysfunction in couples at risk. Thus, clinicians
should consider conducting an assessment of the quality
of the patient’s intimate relationship prior to the start of
treatment in order to assess the levels of support and the
risk for relationship dysfunction. Dailey (37) has argued
that clinicians should address relationship and sexual
concerns early in the process of the disease as a standard
part of treatment. Further, in the same way that clinicians
provide the patient with information related to coping
with HD, clinicians can also provide the caregiver with
appropriate resources such as referrals to local support
groups for family members of people with chronic illness.
We are aware of only one study that has examined the
effectiveness of a psychological intervention for dialysis
patients and their spouses. Hener et al. (59) used a quasi-
experimental design and compared married couples in
which the patient was being treated using home dialysis.
Couples participated in one of the following three conditions:
supportive (focused on acceptance of the illness and
lowered life expectancy and encouragement of emotional
expression), cognitive-behavioral (focused on providing
information about the stress process and teaching coping
skills, including relaxation skills and skills to manage
anxiety and improve family communication and intimacy),
or no treatment. The researchers found few differences
between different treatment approaches and found that
couples in both groups showed a lack of deterioration
compared to the no treatment group. Although these results
are promising, the therapeutic mechanisms remain unclear.
Additional research on the development of appropriate
and effective interventions for ESRD patients and their
spouses is clearly warranted.
Conclusions
A small, but growing number of studies indicate that
psychosocial factors, particularly those involving both
patient and spouse or partner, are associated with ESRD,
with quality of life and emotional functioning in the face
of ESRD, and with mortality risk. However, the exact
role and mechanisms underlying the effects of these
factors is still unclear. Relationship quality and couples’
behavior may be independent risk or protective factors
 COUPLES COPING IN RESPONSE TO KIDNEY DISEASE
contributing to emotional well-being above and beyond
any effects of disease or treatment variation. Relation-
ship factors may also vary as a function of disease status
or treatment, and in turn may mediate the effects of this
variation on outcomes. Finally, such factors may alter
the effects of disease status and treatment on outcome,
moderating their impact. There is little evidence available
as yet to choose among these different models of effect,
and new studies are needed to identify the exact role of
relationship factors in emotional adjustment to ESRD
and in disease progression.
There are also very few empirical findings to guide
clinicians in the best practices for working with couples
facing the demands of ESRD. It is unclear at this time
whether programs that have been developed and tested in
the general population to prevent or treat marital distress
(e.g., 60,61) are the best choices for helping these couples.
New clinical trials of such methods with this population
are clearly needed.
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