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Understanding African-American families' experiences with treatment for kidney failure is necessary for informing the delivery of family-centered care and the design of appropriate interventions. This qualitative study explored treatment-related questions, concerns, and family impacts among African-American family members of patients with pre-kidney failure and kidney failure. Thirty-five family members participated in focus groups stratified by patients' treatment experiences (pre-kidney failure, in-center hemodialysis, peritoneal dialysis, awaiting living-donor kidney transplantation, or post-transplantation). Family members raised questions and concerns about the psychological, lifestyle, and practical aspects of treatment. Similarly, discussions about family impacts emphasized psychosocial effects, lifestyle consequences, and the provision and receipt of support. Efforts to address these questions, concerns, and perceived family impacts through additional research, early and tailored education, and supportive interventions are needed.
Key Words:
Treatment questions, treatment concerns, positive and negative treatment impacts, dialysis, living-donor kidney transplantation.
Family members are often health care professionals' greatest allies in treating patients whose kidney disease has progressed to kidney failure (Mashayekhi et al., 2015; Santos et al., 2017). Family members typically become involved in the treatment of patients as caregivers, a complex role that ordinarily entails providing support; overseeing treatment adherence; scheduling, attending, and transporting patients to medical appointments; assisting with daily activities and treatment delivery; communicating with health professionals; advocating for patients; and participating in treatment decisions (Hoang et al., 2018). The involvement of family members has several beneficial outcomes for patients, including decreased mortality risk, enhanced health-related and physical quality of life, improved self-management behaviors, better psychosocial adjustment to treatment, less treatment complications, and lower levels of depression (Chen et al., 2018; Lilympaki et al., 2016; Untas et al., 2011; Varghese, 2018; Wang et al., 2014; Zolfaghari et al., 2015).
Nevertheless, involvement can compromise the health and well-being of family members. Family members report social isolation, entrapment, restlessness, fatigue, sleep disruptions, pain, depression, anxiety, financial burden, physical injuries, lack of self-care, and instability in their personal lives (Ebadi et al., 2018; Hoang et al., 2018). Additionally, family members usually assist patients with little formal acknowledgment, guidance, or support from health care professionals (Nygårdh et al., 2011; Oyegbile & Brysiewicz, 2017; Tzitzikos & Togas, 2013). Consequently, they are often uncertain about their caregiving roles; feel powerless, foolish, and overlooked; experience difficulties accessing the health...