Background: Although home hemodialysis (HD) is associated with better survival compared with hospital HD, the burden of treatment may be intensified for patients and their caregivers and deter patients from this treatment choice. We describe patient and caregiver perspectives and experiences of home HD to inform home HD programs that align with patient preferences.
Study design: Systematic review of qualitative studies.
Setting & population: Adults with chronic kidney disease and caregivers of both home and hospital dialysis patients who expressed opinions about home HD.
Search strategy & sources: MEDLINE, EMBASE, PsycINFO, CINAHL, and reference lists were searched to October 2013.
Analytical approach: Thematic synthesis.
Results: 24 studies involving 221 patients (home HD [n=109], hospital HD [n=97], and predialysis [n=15]) and 121 caregivers were eligible. We identified 5 themes: vulnerability of dialyzing independently (fear of self-needling, feeling unqualified, and anticipating catastrophic complications), fear of being alone (social isolation and medical disconnection), concern of family burden (emotional demands on caregivers, imposing responsibility, family involvement, and medicalizing the home), opportunity to thrive (re-establishing a healthy self-identity, gaining control and freedom, strengthening relationships, experiencing improved health, and ownership of decision), and appreciating medical responsiveness (attentive monitoring and communication, depending on learning and support, developing readiness, and clinician validation).
Limitations: Non-English articles were excluded.
Conclusions: Patients and caregivers perceive that home HD offers the opportunity to thrive; improves freedom, flexibility, and well-being; and strengthens relationships. However, some voice anxiety and fear about starting home HD due to the confronting nature of the treatment and isolation from medical and social support. Acknowledging and addressing these apprehensions can improve the delivery of predialysis and home HD programs to better support patients and caregivers considering home HD.
Keywords: Home hemodialysis; caregiver burden; chronic kidney disease (CKD); end-stage renal disease (ESRD); hemodialysis (HD); patients; qualitative research; quality of life; quotidian dialysis; renal replacement therapy (RRT) modality; thematic synthesis.
Copyright © 2015 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.