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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% satisfaction with these arrangements. This suggests that
of the ESRD HD patient population is married and 15.6– clinicians who provide long-term treatment to ESRD
19.3% of the population is single (5). Between 16.2% patients need to attend to issues of relationship duration
and 19.2% of the ESRD population are widowed, and and the developmental changes that occur as relation-
between 3.4% and 4.3% are separated. Preliminary ships evolve over the course of the illness (1,9,10).
analyses reported in abstract form suggest married HD
patients have improved survival rates compared with
single patients (6). The Intersection of Disease, Treatment, and
End-stage renal disease appears to progress through Couples Functioning
distinct stages, described as onset, initial treatment,
maturity, and dying and death (17). Cohen (8) suggests End-stage renal disease places the individual at risk
that onset and initial treatment are experienced as a for a number of problems related to physical health and
period of crisis and change by patients and their families, psychological health. Mortality rates for ESRD are high,
requiring major readjustments in daily living over the with most patients dying of cardiovascular or infectious
course of 6 months to 1 year. The most elderly patients, diseases (4). Noncompliance with treatment regimens (e.g.,
and those with most comorbid conditions, have increased skipping or shortening sessions) predicts mortality (11,12).
1-year mortality rates. The initial phase is followed by a Therefore studies of predictors of compliance are abundant
chronic living phase lasting from 2 to 5 years, or for a in the literature (13,14).
smaller proportion of the population, a longer period of The onset of ESRD will have a great impact on quality
time, followed by a “downward health spiral” that may of life and the emotional well-being of both patient and
last for a number of years. Treatment burdens become partner to the degree that it challenges the couple’s
more pronounced during the final phase, as the patient’s capacity to carry out tasks of daily living (9,10). Some of
health becomes more compromised. these tasks involve basic relationship qualities, including
providing emotional support, regulation of conflict and
invalidation, and sexual functioning. Others involve more
Adult and Couples Development pragmatic issues pertaining to changes in employment
functioning and adjustment to the demands of medical
Kidney disease, particularly in its later stages, is a dis- treatment. We will briefly address the research on each of
ease of middle and later adulthood. In 2003 in the United these issues.
States, the median age of the prevalent ESRD population
was 58 years, and patients between 45 and 64 years of
Emotional Support
age accounted for the majority of incident cases, with a
smaller, but substantial percentage also being between Variation in the emotional support that couples provide
65 and 74 years of age (5). one another is associated with both emotional and medical
It is important to consider the psychological and social outcomes in ESRD. Emotional support is perhaps best
dimensions of ESRD within this context (9). During this defined as the expression of messages that the other partner
period of life, the patient and the patient’s family are is cared about, valued, and seen in positive terms. Higher
likely to be involved with a particular set of life tasks. perceived support from the patient’s entire network,
Children of patients will be moving through adolescence as well as from the patient’s family, is associated both
and into early adulthood, and parenting tasks involve more concurrently and prospectively with increased life satis-
monitoring and negotiation, and less direct discipline or faction and reduced depression for the patient (15–17),
structuring of children’s activities. However, given the rates and with decreased risk of mortality (11,18). However,
of divorce in the United States, it is possible that a number Rosenblatt (19) failed to confirm associations of emotional
of patients will be in relationships that are relatively new. support and differential mortality outcome in patients
Work life involves the consolidation and maintenance with diabetes mellitus and ESRD. This group may have
of existing jobs or careers, as well as planning for and different psychosocial and medical risk factors compared
transitioning to retirement. This is also a key period of with nondiabetic patients with renal disease. Kimmel
income generation, when the financial costs of maintain- et al. (20) found greater marital satisfaction was associated
ing a household may be at their greatest and retirement with decreased patient depression and lower mortality
savings are most likely to be accrued. risk in an African American sample, but only for female
Relationships with spouses or partners also evolve patients.
during these years. Marriage can be a source of solace Emotional support in couples usually involves a pattern
and support, or may provide an arena for conflict, anger, of reciprocal support, and it is often not possible to dis-
depression, and dissatisfaction. Many couples will have entangle the effects of support toward the patient and
developed stable ways of providing emotional support support toward the spouse or partner. The emotional
for one another, meeting needs for companionship and reactions of both patient and partner can be strongly
shared recreation, negotiating conflict, and satisfying related (21,22), and this may reflect a pattern of recipro-
sexual desire. Also they will have developed ways of cal support. Rideout et al. (23) found that greater support
coordinating the other tasks of daily life, including from the patient was strongly related to less depression
parenting, work demands, and the balance of work and in the spouse. McClellan et al. (24) found that higher
family life. There is likely to be substantial variability in levels of support the patient provided to other family
how particular couples approach these tasks and in their members were associated with reduced mortality. This is
COUPLES COPING IN RESPONSE TO KIDNEY DISEASE 105
consistent with research on aging populations showing reorganization of family roles and responsibilities (9).
that provision of support can be more generally protective For example, if the patient has been the primary “bread-
than receiving support (25). These findings suggest that a winner,” physical symptoms and the treatment regimen may
more detailed assessment of reciprocal support, particu- result in an increased financial burden if the patient can
larly between patients and spouses or partners, may yield no longer work at the same job or has to reduce work time.
valuable information regarding protective factors for HD A reduction in ability to maintain employment is
patients. Moreover, patient gender should be considered, likely to be associated with reduced income and a greater
given reported gender differences in social support (20) financial burden over time (43). In the general popula-
and life satisfaction (26). tion, job loss and extended unemployment are strongly
and consistently associated with an elevated risk for
both depressive symptoms and major depressive episodes
Conflict and Invalidation
(28,44), and with increases in couples’ conflict and invali-
Couples also vary on the extent to which they engage dation (44,45), providing indirect evidence that disrupted
in conflict and behavior that communicates devaluing employment and concomitant financial burden are likely
messages, including contempt, criticism, and hostility. to decrease the quality of life both directly and through
We are aware of only one study that has focused on cou- disruption of relationship quality. Rideout et al. (23), in
ples conflict. Kimmel et al. (20) found that higher levels one of the few relevant studies, found that financial
of conflict were associated with increased mortality risk stressors were associated with depressive symptoms in
in their sample of African American patients, but only for spouses of ESRD patients.
women. Given the substantial literature demonstrating the In addition to the stress and financial burden of ESRD
impact of conflict and devaluing behavior on marital satis- patient unemployment, the caregiver may have to leave
faction, marital dissolution, and individual depression in his or her job in order to care for the patient (46). Early
other populations (27–29), further research on this aspect retirement may lead to disappointment and resentment
of relationships is clearly called for in ESRD populations. 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).
Sexual Functioning
End-stage renal disease patients are at increased risk
Medical Treatment Demands
for sexual dysfunction due to many factors, including
neuropathy, prescribed medications, and uremia (30– End-stage renal disease patients often require a great
36). Clinical case reports suggest that changes in sexual deal of assistance from a caregiver, who is often a spouse
functioning may be associated with problems in patient or partner (6,9,13,21,48–50). Therapeutic regimens can
self-esteem and reduced physical and emotional intimacy involve HD treatments in the home or in a treatment cen-
in couples (37). Sexual problems, including lower sexual ter three times each week, with each session lasting up to
satisfaction, lower frequency of intercourse, and specific 4–5 hours. In either situation, stress may be experienced
dysfunctional symptoms, are associated with patient, but by a significant other who either assists with transporta-
not partner, depression in at least one study (38). Studies tion to the center or with the HD treatment in the home.
have failed to find associations between sexual dysfunc- Regardless of the method, treatments for ESRD can
tion and marital discord or relationship satisfaction (30,38), be disruptive to the daily schedule of patients and their
although sample sizes in these studies have been small. A caregivers. Maintaining the treatment regimen may result
small study suggested dialysis patients who had a greater in heightened levels of stress and caregiver burden
level of sexual dysfunction had more marital difficulties (21,48,50). There may also be a high level of stress for
than transplant patients (39). Normative research on aging the spouse who understands the mortality implications
populations indicates that sexual functioning continues of ESRD treatment, as well as for the spouse who takes
to be important into later life for many couples (40), responsibility for the treatment itself (9).
reinforcing its relevance for ESRD patients and their There is some limited research on caregiver burden
partners across the long-term course of treatment. among spouses of ESRD patients. Lowry and Atcherson
(46) performed early studies on and reviewed data from
other programs regarding depression, anxiety, and marital
Employment Functioning
problems in spouse assistants of home HD patients. A
End-stage renal disease patients are clearly at risk study of ESRD transplant candidates found that although
for difficulties in obtaining and maintaining gainful and quality of life was significantly related to caregiver
meaningful employment. Data gleaned from the DMMS burden and self-reported health, the majority of caregivers
(41) suggest that although almost 42% of patients reported low caregiver burden (49). In contrast, using a
were employed before starting dialysis, only 21.1% were sample of chronic HD patients, Belasco and Sesso (48)
employed at initiation. Only 6.6% were employed 1 year found that caregivers reported significant impairments in
later. The authors note the extent of follow-up data quality of life in a number of dimensions. These findings
collected by the USRDS may have been incomplete. highlight the importance of considering the disease stage
Data from one national study indicated that the odds and the role of successful transplantation in examinations
ratio for labor force nonparticipation in those with of caregiver strain.
renal dysfunction was 7.94 (42). The treatment regimen Research on gender differences in perceived caregiver
requirements and accompanying symptoms may require burden among older persons caring for impaired spouses
106 Gee et al.
suggests that the experience of caregiving differs between the stress associated with the treatment regimen and
men and women. While some research suggests that women potential loss of income due to the illness (56). Several
experience more overall caregiver burden than men (51), small, preliminary studies have suggested spouses of
other research has failed to demonstrate differences different genders from different cultural and ethnic
(49,52). However, some research suggests that there backgrounds may be at differential risk (20,50,57).
may be gender differences along specific dimensions of
caregiver strain (52). For example, husbands experienced
more emotional strain when the caregiving duration was Implications for Prevention and Treatment
shorter, possibly because the situation is more stressful
when they are unfamiliar with caregiving tasks. In addi- Couples that have been in a supportive and stable
tion, among caregivers of ESRD patients, the physical relationship will have had the opportunity to develop a
health (52) and mental health (48) of the caregiver have communal coping style that will help them weather the
been found to be associated with levels of perceived bur- stress and changes associated with dialysis treatment.
den. Therefore, a multidimensional assessment of gender On the other hand, couples that have failed to develop a
differences in caregiver burden as well as an assessment positive and supportive relationship may be at risk for
of caregiver physical and mental health may be useful in further relationship deterioration as a result of disease-
understanding ways to assist couples in their adjustment related stressors (58). However, clinicians may have the
to the stress of the medical regimen. opportunity to intervene early to prevent relationship dis-
Further, as patients get older, they are at greater risk tress and dysfunction in couples at risk. Thus, clinicians
for loss of their partner due to age-related illnesses. The should consider conducting an assessment of the quality
loss of a partner can be difficult at any age; however, for of the patient’s intimate relationship prior to the start of
an ESRD patient this may also mean the loss of a primary treatment in order to assess the levels of support and the
caregiver. In addition, caregivers may experience more risk for relationship dysfunction. Dailey (37) has argued
strain as they age if they are in poor health or lack the that clinicians should address relationship and sexual
ability to perform caregiving responsibilities (52). Thus concerns early in the process of the disease as a standard
clinicians may need to discuss caretaking contingencies part of treatment. Further, in the same way that clinicians
with their clients and work to involve other family mem- provide the patient with information related to coping
bers such as adult children or siblings in the planning with HD, clinicians can also provide the caregiver with
process in order to reduce caregiver burden and ensure a appropriate resources such as referrals to local support
continuum of care for the patient. 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
Ethnic and Cultural Variation patients and their spouses. Hener et al. (59) used a quasi-
experimental design and compared married couples in
Ethnic differences may affect the patient’s experience which the patient was being treated using home dialysis.
in the disease process, as well as the coping mechanisms Couples participated in one of the following three conditions:
employed. In the United States, African Americans and supportive (focused on acceptance of the illness and
Native Americans have higher rates of ESRD than lowered life expectancy and encouragement of emotional
Caucasian and Asian Americans (4). Thus it is incumbent expression), cognitive-behavioral (focused on providing
upon clinicians developing interventions for coping with information about the stress process and teaching coping
ESRD to understand how cultural factors may impact skills, including relaxation skills and skills to manage
risk and protective processes. For example, the tendency anxiety and improve family communication and intimacy),
for Native Americans to hold a more fatalistic view of or no treatment. The researchers found few differences
the world in which they believe that people have little between different treatment approaches and found that
control over what happens to them (53) may lead them to couples in both groups showed a lack of deterioration
be less compliant with their HD regimen. compared to the no treatment group. Although these results
According to the U.S. Department of Commerce (54), are promising, the therapeutic mechanisms remain unclear.
African American women are more than twice as likely Additional research on the development of appropriate
to have never married as their Caucasian counterparts. and effective interventions for ESRD patients and their
Similarly, Native Americans are more likely than the spouses is clearly warranted.
general population to be unmarried (53). However, both
the Native American and African American populations
tend to have strong affiliations with extended family and Conclusions
often live with them in the same household (55). Keeping
these family structure issues in mind, clinicians should A small, but growing number of studies indicate that
invite the patient to involve a nonmarital partner or psychosocial factors, particularly those involving both
extended family in discussions of treatment and treat- patient and spouse or partner, are associated with ESRD,
ment compliance (56). with quality of life and emotional functioning in the face
Reflecting the higher rates of female-headed households, of ESRD, and with mortality risk. However, the exact
African American and Native American populations are role and mechanisms underlying the effects of these
also more likely than Caucasians to be living in poverty factors is still unclear. Relationship quality and couples’
(53,54). Stress associated with poverty may exacerbate behavior may be independent risk or protective factors
COUPLES COPING IN RESPONSE TO KIDNEY DISEASE 107
contributing to emotional well-being above and beyond national, Section B: Sciences & Engineering, 57, 6173, US: University of
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