Advice for Living With Hemodialysis: A Qualitative Study of Older Patients and Their Care Partners

The number of older adults requiring dialysis is increasing, yet many patients remain unprepared for this life-altering transition and its profound impact. Care partners play a pivotal role in assisting with dialysis; although this influences their life experiences, they are often overlooked in preparedness efforts. This study characterized the lived experiences of older adults receiving maintenance dialysis and their care partners.

Descriptive qualitative study.

Adults in the Duke Health system aged ≥65 years receiving in-center hemodialysis for ≤1 year and their primary care partner. Each individual completed a semistructured interview and survey.

Hybrid deductive-inductive thematic analysis of interview transcripts.

Thirty-three patients and 36 care partners completed interviews. Two identified themes described advice for patients: You determine whether your treatment journey is good or bad and maintain good health to facilitate smooth dialysis sessions. Two themes described advice for care partners: Prepare for a major commitment with role demands and consequences and putting yourself on the backburner is counterproductive. Three themes described advice relevant for patients and care partners: The care dyad should reflect a strong, collaborative, and supportive relationship; gain knowledge about dialysis before and after starting treatment to improve your experience; and plan ahead and organize yourself to effectively manage life on dialysis.

Patients all cared for in a single health system.

Older patients receiving dialysis and their care partners provided advice affirming the importance of person- and family-centered approaches to care. This advice may inform clinical care models for maintenance dialysis.

Dialysis unpreparedness is common among older adults. Family and friends who help with dialysis (ie, care partners) also experience unpreparedness for their roles as caregivers, creating stress and potentially other adverse outcomes. Research has shown patients and care partners value and benefit from learning from others about lived experiences related to the same medical condition. This study asked older adults and their care partners in their first year of in-center hemodialysis to offer advice for peers initiating this treatment. This advice emphasized acceptance and positivity, self-care, promoting caregiver readiness, self-prioritization, strong patient-care partner relationships, treatment knowledge, and organizational skills. These findings highlight peer sharing as a potential resource for dialysis preparedness and person- and family-centered approaches to clinical care.