Patient and caregiver values, beliefs and experiences when considering home dialysis as a treatment option: a semi-structured interview study.
BACKGROUND
Home dialysis can offer improved quality of life and economic benefits compared with facility dialysis. Yet the uptake of home dialysis remains low around the world, which may be partly due to patients' lack of knowledge and barriers to shared and informed decision-making. We aimed to describe patient and caregiver values, beliefs and experiences when considering home dialysis, to inform strategies to align policy and practice with patients' needs.


METHODS
Semi-structured interviews with adult patients with chronic kidney disease Stage 4-5D (on dialysis <1 year) and their caregivers, recruited from three nephrology centres in New Zealand. Transcripts were analysed thematically.


RESULTS
In total, 43 patients [pre-dialysis (n = 18), peritoneal dialysis (n = 13), home haemodialysis (n = 4) and facility haemodialysis (n = 9)] and 9 caregivers participated. We identified five themes related to home dialysis: lacking decisional power (complexity of information, limited exposure to home dialysis, feeling disempowered, deprived of choice, pressure to choose), sustaining relationships (maintaining cultural involvement, family influence, trusting clinicians, minimizing social isolation), reducing lifestyle disruption (sustaining employment, avoiding relocation, considering additional expenses, seeking flexible schedules, creating free time), gaining confidence in choice (guarantee of safety, depending on professional certainty, reassurance from peers, overcoming fears) and maximizing survival.


CONCLUSIONS
To engage and empower patients and caregivers to consider home dialysis, a stronger emphasis on the development of patient-focused educational programmes and resources is suggested. Pre-dialysis and home dialysis programmes that address health literacy and focus on cultural and social values may reduce fears and build confidence around decisions to undertake home dialysis. Financial burdens may be minimized through provision of reimbursement programmes, employment support and additional assistance for patients, particularly those residing in remote areas.
Sydney School of Public Health, University of Sydney, Sydney, NSW 2006, Australia Hawke's Bay District Health Board, Hawke's Bay, New Zealand.
Rachael C
RC
Walker
Sydney School of Public Health, University of Sydney, Sydney, NSW 2006, Australia Institute for Choice, UniSA Business School, Sydney, Australia.
Kirsten
K
Howard
Sydney School of Public Health, University of Sydney, Sydney, NSW 2006, Australia NHMRC Clinical Trials Centre, The University of Sydney, Sydney, Australia.
Rachael L
RL
Morton
Department of Medicine, University of Otago Christchurch, Christchurch, New Zealand.
Suetonia C
SC
Palmer
Baxter Healthcare (Asia-Pacific), Shanghai, China.
Mark R
MR
Marshall
Sydney School of Public Health, University of Sydney, Sydney, NSW 2006, Australia Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.
Allison
A
Tong
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers; D003657:Decision Making; D005260:Female; D006437:Hemodialysis, Home; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009520:New Zealand; D057240:Patient Preference; D010530:Peritoneal Dialysis; D011788:Quality of Life; D051436:Renal Insufficiency, Chronic / Q000628:therapy*; D055815:Young Adult
haemodialysis; home haemodialysis; patients; peritoneal dialysis; qualitative research