Proceedings of the First Asian Chapter Meeting ISPD December 13 15, 2002, Hong Kong Peritoneal Dialysis International,

l, Vol. 23 (2003), Supplement 2

0896-8608/03 $3.00 + .00 Copyright 2003 International Society for Peritoneal Dialysis Printed in Canada. All rights reserved.

PSYCHOSOCIAL ASPECTS IN RENAL PATIENTS

Dora K.C. Leung

Renal Unit, Department of Medicine, Tuen Mun Hospital, Hong Kong SAR, China
It is not uncommon for renal patients to present with psychosocial problems and behavioral problems. This paper briefly discusses some of the psychosocial factors associated with renal disease and peritoneal dialysis, considers the role that those factors play in relation to clinical treatment, and suggests nursing interventions that involve problem-solving with patients and providing support to caregivers. Because nurses are on the front line in encounters with patients, their contribution can facilitate support for the psychosocial situations of their patients through effective communication within a committed multidisciplinary team that share a vision of the significance of psychosocial intervention.
Perit Dial Int 2003; 23(S2):S90S94
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KEY WORDS: Chronic disease; stressors; assessment; encouragement; life enhancement; support to caregivers; multidisciplinary team.

ny illness that occurs within the context of an individuals life is likely to have effects at the psychological and social levels. However, health care providers often tend to separate the biologic and pathologic elements of illness from the psychosocial elements (1). End-stage renal disease (ESRD) is a chronic illness that results from a number of pathologic processes, with subsequent physiologic upsets. The condition cannot be managed by medical intervention alone. Periodic monitoring and supportive care are required to reduce the degree of illness and to maximize physical function and self-care. A diagnosis of ESRD creates turmoil that reaches into all aspects of a persons life. The diagnosis precipitates a rollercoaster ride of emotions, including fear and anger, despair and hope. Life with kidney failure becomes challenging. The person is forced to confront, in a very personal way, the frailty and vulnerability of the human condition.
Correspondence to: D.K.C. Leung, Renal Unit, Tuen Mun Hospital, Tsing Chung Koon Road, New Territories, Hong Kong SAR, China. galaxy97@netvigator.com

Research by professionals has found that the psychosocial environment in which an ESRD patient lives affects the course of the disease and the patients physical well-being (2). Medical technology has made renal replacement therapies available to adjust the physiologic upsets in ESRD patients. In various countries, differences occur in the use of the various dialysis modalities, reflecting the effects of medical and economic factors, of resource issues, and of professional preferences (3). Peritoneal dialysis (PD) is one treatment option. A patient with ESRD who uses PD faces, in addition to a debilitating and disruptive chronic illness, a treatment regime that is itself complex, demanding, and incessantly intrusive on personal and social life (4). Estimates suggest that 25% or more of people with chronic renal failure present with depressive symptoms, and one third of them may be suffering from a major depression that requires treatment (5,6). Numerous psychosocial stressors affect ESRD patients and their families. Some of the stressors are dependency, role loss, changed body image, financial concerns, vocational concerns, and changes in social and marital relationships. The response by patients and other involved personsto those stressors affects adjustment to treatment and response to treatment regimes. By reaching a better understanding of the day-to day stresses and concerns of patients, staff in renal units can respond with appropriate support (6). The present article briefly discusses some of the psychosocial factors associated with ESRD and PD, considers the roles that those factors play in relation to clinical treatment, and suggests nursing interventions that use problem-solving with the patient for optimal treatment outcome.
PHYSIOLOGIC FACTORS

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End-stage renal disease results from irreversible damage to kidney tissue. Clinical manifestations include edema, uremia, anemia, gastrointestinal disorders, dermatologic symptoms, and renal osteodys-

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trophy. Physical disturbances may present as generalized discomfort, nausea, insomnia, diminished tolerance for exercise, pallor, and pain. In addition, complications attributable to comorbid conditions such as diabetes and cardiovascular problems magnify the physiologic and physical disturbances. As a result, previously normal lives are disrupted by varying degrees of physical limitation, and patients follow a trajectory of perceivable alterations in ability to function physically and to engage in social activities. Integration of dialysis treatment into daily life frequently undermines the usual patterns and activities of daily living. Care of the chronically ill patient must therefore focus not only on primary physical interventions, but also on mitigating the psychosocial impact of the illness on daily life (5). The major psychosocial factors for patients with ESRD on PD are emotion, self-esteem, lifestyle, personal values, social culture and beliefs, and sexual function. Emotion: The physical effects of ESRD are apparent. Emotional effects relating to the illness and its treatment also exist. They include fear (What does the future hold with an implanted catheter?), anger (Why me?), grief (for loss of a former image of capability before becoming dependent on dialysis), and depression (owing to the threat of PD complications). Those emotions cannot be avoided. Fear of the unknownthe course of the illness, partial resumption of previous lifethreatens the patient and motivates a search for assistance in biopsychosocial adaptation. Grief for a former self-image drives the patient to integrate the illness and its treatment as a permanent part of personal identity. Depression may provide time for the long-term reality to sink in, with eventual longterm adaptation. Acceptance of the illness and its treatment is a recognition that the unwelcome intruder is here to stay. Sometimes the patient directs the emotional effects at inappropriate targets: anger at a spouse, an employer, or a health care provider, for example. At other times, suicidal thoughts may emerge. Everyone involved with the patient must understand what is happening and must communicate care and support. Self-esteem: Self-esteem refers to personal judgment of ones own worth. It is rooted in an individuals personal perception of goal attainment with regard to a personal ideal. Patients on PD may experience a feeling of lack of control over their destiny. They may have to compromise or to abandon long-range goals. It takes time for the patient to adjust and adapt. Altered self-esteem can be triggered by role changes. For example, a breadwinner becomes, in personal perception, a burden to the family; the debilitating effects of illness causes dependence on PD; unemployment leads to financial hardship.

Body image is the mental picture that people have of their own bodies and bodily functions, including associated external and internal sensations. It also includes a personal perception of the way others see oneself. The physical imperfections of the patient on PDa permanent peritoneal catheter, skin lesions, uremic breath, distended abdomencan contribute to stress or even lead to distortions in the deeper sense of self. Not uncommonly, anger and frustration escalate. A group environmentwith peer support, sharing of personal experiences, exchange of successful strategiescan provide opportunities to create supportive interpersonal relationships. Lifestyle: The pervasiveness of uremic symptoms and the commitment of time and energy necessary for a PD treatment regime disturb virtually every aspect of a patients lifestyle. The intrusiveness of the illness on certain activities and interests that are valued by the patient (such as travel or sports) changes life patterns. Enjoying a tub bath becomes a luxury for the patient with a peritoneal catheter. Eating preferences or cooking patterns may have to be adapted to meet the nutritional requirements of the illness and to observe restrictions on fluid and diet. Follow-up appointments and treatment times may clash with the daily work schedule. The debilitating nature of the illness may restrict the number of working hours or require the patient to quit a job. A distorted bodily shape may require a change in clothing style. A positive adjustment can be encouraged by the provision of opportunities for patient-to-patient communication. Personal Values: Personal values refers to any situation valued by the patient. A particular individual may be concerned with diminishing urine output or other decline in bodily function as the illness progresses. The person may also worry about an inability to attain a desired goal or a failure to sustain a previously harmonious relationship with the family because of inadequate support or understanding from other family members (as perceived by the patient). Employment may be lost due to lack of social recognition of the persons work capacity. Disturbance in self-concept may lead to depressionsometimes associated with suicidal thoughts. Poor self-esteem may be manifested by poor self-hygiene, by excessive dependency, or, not uncommonly, by lack of adherence to treatment requirements. Rehabilitation management can help to restore the patients functional strengths and optimal well-being. Some patients make secondary gains from the illness, because they discover a potential that was not previously recognized: intelligence for self-management of health care, closer family relationships, or better social supports. Health Beliefs and Culture: It is not uncommon to encounter patients with attitudes such as Kidney
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disease is a consequence of overwork, Chronic illness is the penalty imposed by supernatural forces for having broken moral codes, The role of patient is a burden to family and to self, The role of patient denotes inferiority among peers, Laypeople cant practice self-care in health matters. Health beliefs and culture influence how a patient adapts to treatment requirements. For example, perceptions about nutrition play an important role in patients on PD. Nutritionists can provide good advice about a lowphosphate diet; however, the patient may believe that food is the greatest gift and that there should be no restrictions. Perceptions about the body, ideas about self and about illness, and social attitudes toward illness vary and may be very different between ethnic groups, countries, or even families. Care should focus on the patients personal and cultural realities and should not impose beliefs and culture from outside. Nurses require the sensitivity to avoid poor interpersonal contacts, distorted socialization, and negative influences on the patients motivation that will cause grief in the patient about self or others. The establishment of supportive social environments has been shown to have a positive impact (7). Sexual Function: Renal disease may affect sexual performance in both men and women. The cause or causes may be organic (hormonal change attributable to uremia, or vascular insufficiency in diabetes), psychosocial (changes in self-esteem from alteration in body image due to the presence of the PD catheter, leading to feelings of sexual unattractiveness), or physical (distention and discomfort due to intraperitoneal fluid, uremic symptoms that decondition the patient on PD treatment). The role of patient and the accompanying stress on the partner can further alter role perceptions and affect sexual performance in some patients. The effects of drugs prescribed as part of the treatment regime can cause sexual dysfunction. The knowledge that help is available if problems occur is all that is needed until a specific problem arises. The patient may reflect sexual difficulties in a loss of physical function. Referral to a sex therapist or counselor is appropriate so that specific strategies can be developed to improve sexual function and to allay the frustrations of the patient and the partner.
PSYCHOSOCIAL INTERVENTIONS

End-stage renal disease is progressive, and the disturbances it brings are progressive. Any intervention has to be tailored to the progress of the disease itself, with the individuals level of physical, psychological, and social functioning as the central focus. The concurrent physiologic, psychological, and social stresses
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demand cognitive effort from the patient in coping. Researchers suggest that patient adherence to a medical regime is significantly related to high social desirability and a shorter length of time on dialysis (8). Patients with ESRD are empowered for self-care in matters of drug administration and PD management, but adherence to treatment requirements must be a voluntary act of submission, with consent for the adjustment and adaptation to the illness and treatment. Psychosocial intervention is best started as early (at diagnosis) and demands continuous effort. Nursing Implications: End-stage renal disease has a characteristically downward trajectory. Patients have to come to terms with their current physical condition. Psychosocial nursing interventions should attempt to facilitate adjustment to changes in the course of the illness and to normalize social interaction and lifestyle by preventing medical crises, controlling symptoms, and incorporating the PD treatment regimes into daily living (9). Knowledge can significantly minimize a patients anxiety. It is crucial that nurses have the skills to provide clear information, to help patients identify their goals in the course of treatment, and to assist with problem-solving for optimal physical functioning. Assessment: Assessment determines the patients needs, identifies problems and potential problems, and collects information for a treatment plan so that appropriate support can be rendered. The assessment therefore focuses on the effect of the illness on the patient. Useful information includes the patients lifestyle, patterns of daily living, personality, strengths and interests, normal coping patterns, understanding of the current illness, perception of treatment regimes, recent life stresses or changes, and major issues raised by the disease. By listening to the patient and the family in the course of discussion, nurses can identify the observable psychosocial interferences consequent to the disease and the needs for assistance. At the same time, information on the expected course and likely outcome of the disease can be provided. Encouragement: The role of the health care professional is to encourage and, where possible, to enable patients to accept responsibility for their health and well-being and to fulfill their obligations within the family and society. As well as providing knowledge and clarifying misconceptions, nurses can encourage patients to accept the personal limitations consequent to the illness and its treatment. When a patient is encouraged to perform self-care, better self-esteem and power to maintain health are established. When open discussion and awareness of the mutual situation is encouraged between patients and their partners, positive and understanding attitudes are reinforced. The perception of emotional support has

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a documented association with better physical and mental health in dialysis patients (4,10,11). Life Enhancement: Dependent patients may adapt to treatment regimes more easily, but excessive dependence can create extreme demands on caregivers and can impede rehabilitation. Some patients may achieve a secondary gain from the illness, and some may enjoy the role of patient. Nurses can facilitate a patients adaptations to treatment requirements by maximizing the patients strengths and supporting the patient in the treatment environment at home, while making judicious use of available resources. Individualizing treatment and minimizing its complexity may encourage adherent behavior. Frequent assessment, education, motivation, reinforcement, encouragement, and teaching concerning self-management and self-monitoring will, at the very least, maximize the patients comprehension of the illness and personal motivation for adherence an especially important requisite for living with a chronic condition (12). Participation by patients in patient support networks, rehabilitation activities, physical exercise schedules, and educational programs may help individuals to establish new supportive relationships, to achieve social recognition and appreciation, and to overcome social isolation, which has been discovered to be associated with treatment noncompliance (13). Complianceadherence to treatment requirements in a therapeutic regimenis a critical concept for chronic renal failure patients and for their caregivers alike. Compliance changes over time. Significant differences related to social support have been found, especially when the demographic variable of education is controlled (14).
SUPPORT TO FAMILY

ESRD patients who will start on PD, psychosocial intervention starts with a predialysis briefing and continues with subsequent encounters at the predialysis assessment, break-in education, teaching and learning sessions, telephone visits, home visits, and ad hoc counseling sessions. Through the collaborative efforts of health care professionals and the patient support group, rehabilitation activities are coordinated with the goals of enhancing peer support and optimizing mental strengths, physical fitness, and social strengths. Activities include community networks, voluntary visits to new patients, a tuck shop, production of a CD for peer support, health talks, maintenance of a Web site (www.hk-doctor.com/kpa/), Tai Chi, gateball, overnight camps, outings, dinners, mah-jongg competitions, karaoke competitions, and participation in the rehabilitation programs organized by the Hong Kong Society of Nephrology. During the period February 1993 August 2002, we followed 694 patients. Most maintained a positive attitude toward life and got as much out of each day as they possibly could by integrating PD with life. Four patients and 3 relatives were found to be experiencing depressive symptoms that necessitated psychiatric treatment. One patient and 3 relatives committed suicide.
SUPPORT TO STAFF

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Family members play an important role in the wellbeing of the PD patient. They should not be neglected in the process of patient care. A change in the pattern of family life (integrating the lives of family members more flexibly with the patients life) may be necessary to meet the patients PD needs. The patient and the family should be encouraged to share their feelings in a trusting relationship and to make flexible adjustments to cope with the course of the patients illness. Previous studies have revealed that sadness, guilt, and loss were pervasive and prevalent in partnersa unique perspective on the negative impact that dialysis can have on couples. The mobilization of community services is useful to reduce stressors (15,16). Nursing Intervention: Local experience in the Renal Unit, Tuen Mun Hospital, Hong Kong SAR, illustrates practicable interventions. In our unit, for all adult

Dialysis professionals can have a major impact positive or negativeon how patients deal with the life changes caused by PD. Prospects for renal rehabilitation increase if the dialysis staff convey a positive attitude and show belief in the patients potential to achieve rehabilitation goalsparticularly goals that the patient is able to control, such as adherence to treatment requirements, exercise, and self-care. However, not uncommonly, staff are working in emotionally-laden situations, such as those involving difficult behavior on the part of a patient or caregiver, deteriorating conditions in patients with whom a good rapport has been established, or failure of treatment. The experience of anxiety related to job demands and of spiritual distress related to an inability to find meaning or purpose in professional and personal life are frequently mentioned by staff. Renal team members can be given opportunities (in meetings or conferences, for example) to evaluate the causes of stress, to develop ideas, to share ideas with peers, and to create opportunities to honor or encourage members of the team. Some ways to divert attention from stress are to seek humor in experiences, to learn from patients to accept limitations while remaining professional in demeanor and presentation, and to take appropriate time away from work to rest and to play.
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CONCLUSION Renal nurses are confronted with patients who have psychosocial problems and behavioral problems. Developing the ability to recognize those problems and to cope with them is a logical need. Sometimes, psychosocial interventions do not work because of limitations in nursing encounters. Knowing when to call for help and how to use resources is essential for providing quality, cost-effective care (17,18). Traditionally, the social worker is the professional whose training, practice methods, and role expectations are exclusively focused on the psychosocial domain. But because nurses are on the front line, encountering the patients, they can facilitate support for psychosocial needs through effective communication within a committed, multidisciplinary team who share a vision of the significance for patients of psychosocial interventions that contribute to optimal renal replacement therapy and treatment outcomes. REFERENCES
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