title: Patient and caregiver perspectives on home hemodialysis: a systematic review.
abstract: 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.
  
  
  METHODS
  Systematic review of qualitative studies.
  
  
  METHODS
  Adults with chronic kidney disease and caregivers of both home and hospital dialysis patients who expressed opinions about home HD.
  
  
  METHODS
  MEDLINE, EMBASE, PsycINFO, CINAHL, and reference lists were searched to October 2013.
  
  
  METHODS
  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).
  
  
  CONCLUSIONS
  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.
authors.affiliation: Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia; Hawke's Bay District Health Board, Hawke's Bay, New Zealand. Electronic address: rachaelwalker14@gmail.com.
authors.forename: Rachael C
authors.initials: RC
authors.lastname: Walker
authors.affiliation: Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.
authors.forename: Camilla S
authors.initials: CS
authors.lastname: Hanson
authors.affiliation: Department of Medicine, University of Otago, Christchurch, New Zealand.
authors.forename: Suetonia C
authors.initials: SC
authors.lastname: Palmer
authors.affiliation: Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
authors.forename: Kirsten
authors.initials: K
authors.lastname: Howard
authors.affiliation: Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia; Health Economics Research Centre, Nuffield Department of Population Health, University of Oxford, Headington, United Kingdom.
authors.forename: Rachael L
authors.initials: RL
authors.lastname: Morton
authors.affiliation: Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand.
authors.forename: Mark R
authors.initials: MR
authors.lastname: Marshall
authors.affiliation: Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.
authors.forename: Allison
authors.initials: A
authors.lastname: Tong
mesh_terms: D017028:Caregivers / Q000523:psychology*; D005260:Female; D006437:Hemodialysis, Home / Q000379:methods / Q000523:psychology*; D006801:Humans; D008297:Male; D057240:Patient Preference / Q000523:psychology*; D051436:Renal Insufficiency, Chronic / Q000523:psychology* / Q000628:therapy; D012944:Social Support
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