There is no question that life after kidney failure can be challenging, both physically and emotionally. But, for many people on dialysis, it is the hope of a fulfilling life that makes the journey to overcoming these challenges worth the effort.
While people with ESRD [end-stage renal disease] face many physical and emotional changes related to their disease and its treatments, strategies for coping do exist. The basis for successful adjustment includes two key elements: optimal clinical care to improve how patients feel, and rehabilitation management to improve their ability to function.
Without these elements, good long-term outcomes are not possible. In essence, patients can live long, enjoy a high quality of life, and live independently and productively–if they are first able to function, both physically and mentally.
The Impact of Emotions
While the physical effects of renal disease are often apparent, the emotional effects may not be. Their impact and importance, however, cannot be overlooked. From the start, people on dialysis are confronted with a number of powerful emotions. Among the most common are:
- Fear. What does the future hold?
- Anger. Why me?
- Loss of control. Will I be dependent on others?
These emotions can be triggered by several factors. Lack of information plays a major part. For example, a 1998 Life Options Patient Opinion Study showed that, at the start of dialysis, many patients don’t know what to expect–and they often fear the worst.
According to the study, many new patients believed death was imminent and began preparing for it, both psychologically and practically.1 Said one patient, “I didn’t know people could live as long on dialysis. I thought if I didn’t get a kidney within so many years, that that was going to be it, that dialysis wasn’t a long-term thing.”
After the initial adjustment to kidney failure, people on dialysis continue to have many life changes. Quality of life is often compromised, for example, by fatigue, and challenges in planning meals and limiting fluids. For many patients, this may be compounded by the time and energy required of dialysis treatment. In addition, patients’ social and role responsibilities may be altered due to such issues as problems with travel, impotence, and changes in body image.
Such changes are almost certain to have an emotional impact.
“Fatigue, weakness, nausea, physical limitations, loss of functioning, changes in bodily appearance, and the cumulative impact of struggling with a life-threatening illness will inevitably affect the patient’s feelings,” explains Laurie Rosen, MSW, in an article on psychological factors in ESRD.2
Fortunately, there are ways to manage the ongoing emotional effects of kidney disease. For example, education, social support, and self-care have been shown to foster coping skills among people on dialysis.3 Patients themselves have cited additional strategies for emotional adjustment, including adherence to prescribed treatments, positive attitude, exercise, and engagement in life.1
Research has shown that early education about renal disease, its treatments, and the potential to live long and productively can aid in overall adjustment and decision making for people on dialysis. More specifically, learning about topics including kidney failure, treatment choices, medications, and the renal diet can help dialysis patients maintain a sense of control, a factor linked to improved adherence4 and life satisfaction.
In one recent study, education was shown to be a positive predictor of physical and mental health for people on hemodialysis.5Informed patients have also reported fewer symptoms6 as well as more confidence in their ability to manage the symptoms they do have.
Encouragement and Support
Supportive social environments have been shown to have a positive impact on adjustment for people with renal disease.7
Encouragement, especially from families and dialysis staff, can increase patients’ autonomy, control, and participation in treatment. Further, a number of studies show that patients who are encouraged to learn about their treatment have better outcomes and improved quality of life.5,8 Such patients may take more responsibility for things they can control, including exercise, remaining actively engaged in life, and sticking to the renal meal plan. For example, one study9 showed that the support patients received from their families and dialysis staff was a major factor in promoting employment–an activity that contributes to emotional health.
With education and support, people on dialysis can begin to make careful, informed decisions about their treatment. Self-management can help patients regain control over certain aspects of their lives and their health–a step that can directly influence emotional well-being and other important outcomes.
For people on dialysis, successful self-management begins with a positive attitude and a belief that living long and well is within their control. For example, in one study, “patients who saw their illness as an opportunity for personal growth were happier than those who reacted to it with blame and avoidance.”10
Several self-management activities noted below have been shown to contribute to patients’ emotional health:
- Self-Care. Patients’ involvement in self-care can positively affect their adherence with treatment regimens.11 Further, patients trained for self-care hemodialysis have reported better subjective quality of life, including social and role functioning, and emotional well-being.5
- Exercise can enhance the potential for physical activity and improved quality of life. Exercise has been shown to help reduce fatigue, alleviate depression, improve social adjustment, and help patients feel more independent and in control of their lives and their health.12
Employment and Engagement
Employment and involvement in school have also been shown to promote greater acceptance of kidney failure10–and accepting and adjusting to illness positively influences quality of life. In addition, employment can increase self-esteem and provide a source of identity and a sense of contributing to society.13
The Role of Dialysis Staff
People on dialysis can significantly influence their own long-term outcomes. However, dialysis professionals can have a major impact–positive or negative–on how patients deal with the life changes caused by kidney failure and its treatments.
According to the authors of a study on adjustment and acceptance of ESRD: “The role of the healthcare 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.”14
Prospects for renal rehabilitation increase if dialysis staff convey a positive attitude and show a belief in patients’ potential to live long and well on dialysis. In addition, staff encouragement toward rehabilitation goals helps patients form positive attitudes that will allow them to participate actively in life. Further, staff can provide valuable information on a wide range of topics– particularly things patients are able to control, like adherence, exercise, and self-care.
At the facility level, adjustment can be aided by offering flexible dialysis schedules, work-related goal-setting, and referral to vocational rehabilitation as well as opportunities for patient-to-patient communication and meaningful staff interaction.
Overcoming the emotional challenges of kidney failure and dialysis is an important and necessary step toward renal rehabilitation. It is a step that is most effectively promoted by educating patients that they can achieve a long and full life on dialysis–and by providing the tools and support that will help them to do so.
1. Life Options Rehabilitation Advisory Council. Renal Rehabilitation Report [1999;7(1):2, 1999].
2. Rosen, LS. Common psychological factors in the treatment of end-stage renal disease. Journal of Nephrology Social Workers (1999;19:69-71).
3. Rice, V, Mullin, M, and Jarosz, P. Pre-admission self-instruction effects on post-admission and post-operative indicators in CABG patients. Res Nurs Health (1992;15:253-259).
4. Goldberg, AP, Geltman, EM, Hagberg, JM, Gavin, JR III, Delmez, JA, Carney, RM, Naumowicz. A, Oldfield. MH, and Harter, HR. Therapeutic benefits of exercise training for hemodialysis patients. Kidney International Supplement (1983;16:S303-S309).
5. Meers, C, Singer, M, Toffelmire, EB, Hopman, W, McMurray, M, Morton, AR, and MacKenzie, TA. Self-delivery of hemodialysis care: A therapy in itself. American Journal of Kidney Diseases (1996;27(6):844-847).
6. Painter, PL, Nelson-Worel, JN, Hill, MM, Thornbery, DR, Shelp, WR, Harrington, AR, and Weinstein, AB. Effects of exercise training during hemodialysis. Nephron [1986;43(2):87-92].
7. Whittaker, AA. The influence of psychosocial factors on patient adjustment to continuous ambulatory peritoneal dialysis. Journal of the American Nephrology Nurses’ Association (1984;11:10).
8. Morris, P, and Jones, B. Life satisfaction across treatment methods for patients with end-stage renal disease. International Journal of Psychiatry Medicine (1991;21:343-354).
9. Curtin, R, Oberley, E, Sacksteder, P, and Friedman, A. Differences between employed and non-employed dialysis patients. American Journal of Kidney Diseases [1996;27(4):533-540].
10. Felton, BJ, Revenson, TA, and Hinrichsen, GA. Stress and coping in the explanation of psychological adjustment among chronically ill adults. Social Sciences Medicine (1984;18:889-898).
11. Given, B, and Given, C. Compliance among patients with cancer. Oncology Nurses’ Forum (1989;16:97-103).
12. Painter, P. The importance of exercise training in the rehabilitation of patients with end-stage renal disease. American Journal of Kidney Diseases [1994;24(1 Suppl 1):S2-S9].
13. Juneau, B: Psychologic and psychosocial aspects of renal rehabilitation [Review]. Critical Care Nursing Quarterly (1995;17:62-66).
14. Keogh, AM, and Feehally, J. A quantitative study comparing adjustment and acceptance of illness in adults on renal replacement therapy. Journal of the American Nephrology Nurses’ Association [1999;26(5):471-477].
Reprinted from the Renal Rehabilitation Report, with permission from the Life Options Rehabilitation Program. This article was also posted on the iKidney.cm website.
The Life Options Rehabilitation Program is supported by Amgen Renal Advances and is administered by Medical Media Associates, Inc., of Madison, WI. Life Options educational programs are based on the “5 E’s” of renal rehabilitation: Encouragement, Education, Exercise, Employment, and Evaluation. For information on free materials for dialysis patients and professionals, contact the Life Options Rehabilitation Resource Center at (800) 468-7777, or visit the Life Options website.
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