SAT-474 “IN OUR OWN TERMS”: DYADS EXPECTATIONS ABOUT A FAMILY-BASED SELF-MANAGEMENT INTERVENTION IN END-STAGE RENAL DISEASE

Abstract

End stage renal disease (ESRD) is a complex condition that requires patients to follow strict life-changing treatment regimens and health care recommendations. Family caregivers can play a protective role in treatment adherence and help the patient cope with the challenges that this disease may pose. Self-management interventions seek to increase an individual's ability to deal with the implications of the condition throughout its course. Although theoretically oriented, the design of such interventions can benefit from the patients and their family caregivers’ input to ensure that their preferences and needs are met. This study aimed to explore the expectations and concerns of patients and their family caregivers regarding participation in a family-based self-management group intervention for ESRD. The study received full approval from the Institutional Ethics Committee. A qualitative exploratory study was conducted with a purposive sample recruited from two dialysis units. Semi-structured face-to-face dyad interviews were conducted with 17 patients (9 males; 66.6±12.3 years) undergoing hemodialysis for 17.4±11.9 months and their respective family caregivers (11 females; 57.2±13.6 years; 12 spouses). The interviews were digitally audio-recorded, transcribed verbatim, and submitted to content analysis by two independent researchers. Most dyads (n = 12; 71%) were interested in participating in a family-based self-management group intervention. By participating, dyads expect to i) acquire better knowledge and clarification about disease etiology, hemodialysis and related complications, and health care recommendations (9 patients, 53%; 12 caregivers, 71%); ii) give and receive emotional support by sharing experiences (10 patients, 59%; 7 caregivers, 41%); iii) improve disease-related coping skills (3 patients, 18%; 3 caregivers, 18%); iv) improve communication with health professionals (2 patients, 12%); v) and strengthen family involvement in the disease (3 caregivers, 18%). Some participants also expressed concerns of being misunderstood and/or judged by others (3 patients, 18%; 2 caregivers, 12%); and of being contaminated by others’ negative experiences and feelings (1 patient, 6%; 3 caregivers, 18%). Findings suggest that patients and their respective family caregivers expect to benefit from a self-management intervention for ESRD, supporting the need for the development of approaches involving both parties. In accordance with their expectations, future family-based self-management programs for ESRD should be tailored to provide educational and psychological support and promote coping skills training.