Rachael C Walker1, Camilla S Hanson2, Suetonia C Palmer3, Kirsten Howard4, Rachael L Morton5, Mark R Marshall6, Allison Tong2. 1. 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. 2. Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia. 3. Department of Medicine, University of Otago, Christchurch, New Zealand. 4. Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia. 5. 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. 6. Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand.
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. 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.
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.
Authors: Allison Tong; Braden Manns; Brenda Hemmelgarn; David C Wheeler; Nicole Evangelidis; Peter Tugwell; Sally Crowe; Wim Van Biesen; Wolfgang C Winkelmayer; Donal O'Donoghue; Helen Tam-Tham; Jenny I Shen; Jule Pinter; Nicholas Larkins; Sajeda Youssouf; Sreedhar Mandayam; Angela Ju; Jonathan C Craig Journal: Am J Kidney Dis Date: 2016-08-03 Impact factor: 8.860
Authors: Ann M O'Hare; Jackie Szarka; Lynne V McFarland; Elizabeth K Vig; Rebecca L Sudore; Susan Crowley; Lynn F Reinke; Ranak Trivedi; Janelle S Taylor Journal: Clin J Am Soc Nephrol Date: 2017-03-29 Impact factor: 8.237
Authors: Rachael C Walker; Rachael L Morton; Suetonia C Palmer; Mark R Marshall; Allison Tong; Kirsten Howard Journal: Clin J Am Soc Nephrol Date: 2017-10-19 Impact factor: 8.237
Authors: Rebecca Kurnik Seshasai; Nandita Mitra; C Michael Chaknos; Jiaqi Li; Christopher Wirtalla; Dan Negoianu; Joel D Glickman; Laura M Dember Journal: Am J Kidney Dis Date: 2015-12-18 Impact factor: 8.860