Knowledge, barriers and facilitators of exercise in dialysis patients: a qualitative study of patients, staff and nephrologists.

BACKGROUND: Despite growing evidence on benefits of increased physical activity in hemodialysis (HD) patients and safety of intra-dialytic exercise, it is not part of standard clinical care, resulting in a missed opportunity to improve clinical outcomes in these patients. To develop a successful exercise program for HD patients, it is critical to understand patients', staff and nephrologists' knowledge, barriers, motivators and preferences for patient exercise. METHODS: In-depth interviews were conducted with a purposive sample of HD patients, staff and nephrologists from 4 dialysis units. The data collection, analysis and interpretation followed Criteria for Reporting Qualitative Research guidelines. Using grounded theory, emergent themes were identified, discussed and organized into major themes and subthemes. RESULTS: We interviewed 16 in-center HD patients (mean age 60 years, 50% females, 63% blacks), 14 dialysis staff members (6 nurses, 3 technicians, 2 dietitians, 1 social worker, 2 unit administrators) and 6 nephrologists (50% females, 50% in private practice). Although majority of the participants viewed exercise as beneficial for overall health, most patients failed to recognize potential mental health benefits. Most commonly reported barriers to exercise were dialysis-related fatigue, comorbid health conditions and lack of motivation. Specifically for intra-dialytic exercise, participants expressed concern over safety and type of exercise, impact on staff workload and resistance to changing dialysis routine. One of the most important motivators identified was support from friends, family and health care providers. Specific recommendations for an intra-dialytic exercise program included building a culture of exercise in the dialysis unit, and providing an individualized engaging program that incorporates education and incentives for exercising. CONCLUSION: Patients, staff and nephrologists perceive a number of barriers to exercise, some of which may be modifiable. Participants desired an individualized intra-dialytic exercise program which incorporates education and motivation, and they provided a number of recommendations that should be considered when implementing such a program.

Prevention of poor psychosocial outcomes in living organ donors: from description to theory-driven intervention development and initial feasibility testing.

CONTEXT: Although some living donors experience psychological, somatic, and interpersonal difficulties after donation, interventions to prevent such outcomes have not been developed or evaluated. OBJECTIVE: To (1) summarize empirical evidence on psychosocial outcomes after donation, (2) describe a theoretical framework to guide development of an intervention to prevent poor outcomes, and (3) describe development and initial evaluation of feasibility and acceptability of the intervention. METHODS: Based on a narrative literature review suggesting that individuals ambivalent about donation are at risk for poor psychosocial outcomes after donation, the intervention targeted this risk factor. Intervention structure and content drew on motivational interviewing principles in order to assist prospective donors to resolve ambivalence. Data were collected on donors' characteristics at our institution to determine whether they constituted a representative population in which to evaluate the intervention. Study participants were then recruited to assess the feasibility and acceptability of the intervention. They were required to have scores greater than 0 on the Simmons Ambivalence Scale (indicating at least some ambivalence about donation). RESULTS: Our population was similar to the national living donor population on most demographic and donation-related characteristics. Eight individuals who had been approved to donate either a kidney or liver segment were enrolled for pilot testing of the intervention. All successfully completed the 2-session telephone-based intervention before scheduled donation surgery. Participants' ratings of acceptability and satisfaction were high. Open-ended comments indicated that the intervention addressed participants' thoughts and concerns about the decision to donate. CONCLUSIONS: The intervention is feasible, acceptable, and appears relevant to donor concerns. A clinical trial to evaluate the efficacy of the intervention is warranted.

Quality of life and coping strategies among lung transplant candidates and their family caregivers.

Although numerous studies have examined coping strategies and quality of life (QOL) among patients with chronic diseases and their family caregivers, no studies have examined the reciprocal effects of patient and caregiver coping strategies on their dyad partner's QOL. Because most people who cope with stressful health experiences do so within the context of interpersonal relationships, it is important to understand the ways in which the two partners' coping strategies may reciprocally affect each other's QOL. Adult lung transplant candidates and their caregivers (N=114 pairs) participated in semi-structured interviews that included measures of QOL and coping with patients' health-related problems. Multivariate, canonical correlation analyses were performed to examine unique patterns of associations between coping and QOL in patient-caregiver dyads. Better patient QOL, across multiple domains, was associated with better caregiver QOL. Multiple elements of patients' coping, including greater use of active coping and emotionally oriented coping were related to generally poorer patient QOL in psychosocial and physical domains. Similarly, caregivers who used more emotionally oriented coping had poorer QOL. There was no statistically reliable relationship between either (a) patient and caregiver use of coping strategies, or (b) caregiver coping and patient QOL. However, patients' coping strategies were important correlates of caregivers' QOL. These findings belie common clinical beliefs that family members' coping responses to patients' health are likely to affect patient well-being. Instead, patients' coping and QOL may be critical for understanding caregiver well-being, especially in the current era in which caregivers are assuming increased responsibility for providing patient care.