Patient and caregiver values, beliefs and experiences when considering home dialysis as a treatment option: a semi-structured interview study

Rachael C Walker; Kirsten Howard; Rachael L Morton; Suetonia C Palmer; Mark R Marshall; Allison Tong

doi:10.1093/ndt/gfv330

Patient and caregiver values, beliefs and experiences when considering home dialysis as a treatment option: a semi-structured interview study

Nephrol Dial Transplant. 2016 Jan;31(1):133-41. doi: 10.1093/ndt/gfv330. Epub 2015 Sep 7.

Authors

Rachael C Walker¹, Kirsten Howard², Rachael L Morton³, Suetonia C Palmer⁴, Mark R Marshall⁵, Allison Tong⁶

Affiliations

¹ Sydney School of Public Health, University of Sydney, Sydney, NSW 2006, Australia Hawke's Bay District Health Board, Hawke's Bay, New Zealand.
² Sydney School of Public Health, University of Sydney, Sydney, NSW 2006, Australia Institute for Choice, UniSA Business School, Sydney, Australia.
³ Sydney School of Public Health, University of Sydney, Sydney, NSW 2006, Australia NHMRC Clinical Trials Centre, The University of Sydney, Sydney, Australia.
⁴ Department of Medicine, University of Otago Christchurch, Christchurch, New Zealand.
⁵ Baxter Healthcare (Asia-Pacific), Shanghai, China.
⁶ 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.

PMID: 26346314
DOI: 10.1093/ndt/gfv330

Abstract

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.

Keywords: haemodialysis; home haemodialysis; patients; peritoneal dialysis; qualitative research.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adult
Aged
Aged, 80 and over
Caregivers*
Decision Making
Female
Hemodialysis, Home
Humans
Interviews as Topic
Male
Middle Aged
New Zealand
Patient Preference*
Peritoneal Dialysis
Quality of Life
Renal Insufficiency, Chronic / therapy*
Young Adult