Meaning of empowerment in peritoneal dialysis: focus groups with patients and caregivers

Amanda Baumgart; Karine E Manera; David W Johnson; Jonathan C Craig; Jenny I Shen; Lorena Ruiz; Angela Yee-Moon Wang; Terence Yip; Samuel K S Fung; Matthew Tong; Achilles Lee; Yeoungjee Cho; Andrea K Viecelli; Benedicte Sautenet; Armando Teixeira-Pinto; Edwina A Brown; Gillian Brunier; Jie Dong; Nicole Scholes-Robertson; Tony Dunning; Rajnish Mehrotra; Saraladevi Naicker; Roberto Pecoits-Filho; Jeffrey Perl; Martin Wilkie; Allison Tong

doi:10.1093/ndt/gfaa127

Meaning of empowerment in peritoneal dialysis: focus groups with patients and caregivers

Nephrol Dial Transplant. 2020 Nov 1;35(11):1949-1958. doi: 10.1093/ndt/gfaa127.

Authors

Amanda Baumgart^{1

2}, Karine E Manera^{1

2}, David W Johnson^{3

4

5}, Jonathan C Craig^{1

2}, Jenny I Shen⁶, Lorena Ruiz⁶, Angela Yee-Moon Wang⁷, Terence Yip⁸, Samuel K S Fung⁹, Matthew Tong¹⁰, Achilles Lee¹¹, Yeoungjee Cho^{3

4

5}, Andrea K Viecelli^{3

4}, Benedicte Sautenet^{2

12}, Armando Teixeira-Pinto^{1

2}, Edwina A Brown¹³, Gillian Brunier¹⁴, Jie Dong¹⁵, Nicole Scholes-Robertson^{1

2}, Tony Dunning¹⁶, Rajnish Mehrotra¹⁷, Saraladevi Naicker¹⁸, Roberto Pecoits-Filho^{19

20}, Jeffrey Perl²¹, Martin Wilkie²², Allison Tong^{1

2}

Affiliations

¹ Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
² Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
³ Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia.
⁴ Australasian Kidney Trials Network, Faculty of Medicine, University of Queensland, Brisbane, Australia.
⁵ Centre for Kidney Disease Research, University of Queensland at Princess Alexandra Hospital, Brisbane, Australia.
⁶ Division of Nephrology and Hypertension, Los Angeles Biomedical Research Institute at Harbor, University of California, Los Angeles Medical Center, Torrance, CA, USA.
⁷ Department of Medicine, Queen Mary Hospital, The University of Hong Kong, Hong Kong, China.
⁸ Department of Medicine, Tung Wah Hospital, Hong Kong, China.
⁹ Division of Nephrology, Department of Medicine and Geriatrics, Jockey Club Nephrology and Urology Centre, Princess Margaret Hospital, Kowloon, Hong Kong, China.
¹⁰ Department of Medicine and Geriatrics, Pok Oi Hospital, Yuen Long, Hong Kong, China.
¹¹ Department of Medicine and Geriatrics, Tuen Mun Hospital, Hong Kong, China.
¹² Department of Nephrology-Hypertension, Kidney Transplantation, Dialysis, Tours Hospital, SPHERE-INSERM 1246, University of Tours and Nantes, Tours, France.
¹³ Imperial College Renal and Transplant Centre, Hammersmith Hospital, London, UK.
¹⁴ Sunnybrook Research Institute, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada.
¹⁵ Renal Division, Department of Medicine, Peking University First Hospital, Beijing, China.
¹⁶ South Bank Technical and Further Education, Brisbane, Australia.
¹⁷ Kidney Research Institute, Division of Nephrology, Department of Medicine, University of Washington, Seattle, WA, USA.
¹⁸ Department of Internal Medicine, School of Clinical Medicine, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.
¹⁹ School of Medicine, Pontifícia Universidade Católica do Paraná, Curitiba, Paraná, Brazil.
²⁰ Arbor Research Collaborative for Health, Ann Arbor, MI, USA.
²¹ Division of Nephrology, Department of Medicine, St Michael's Hospital Unity Health, University of Toronto, Toronto, Ontario, Canada.
²² Sheffield Kidney Institute, Sheffield Teaching Hospitals National Health Service Foundation Trust, Sheffield, UK.

Abstract

Background: While peritoneal dialysis (PD) can offer patients more independence and flexibility compared with in-center hemodialysis, managing the ongoing and technically demanding regimen can impose a burden on patients and caregivers. Patient empowerment can strengthen capacity for self-management and improve treatment outcomes. We aimed to describe patients' and caregivers' perspectives on the meaning and role of patient empowerment in PD.

Methods: Adult patients receiving PD (n = 81) and their caregivers (n = 45), purposively sampled from nine dialysis units in Australia, Hong Kong and the USA, participated in 14 focus groups. Transcripts were thematically analyzed.

Results: We identified six themes: lacking clarity for self-management (limited understanding of rationale behind necessary restrictions, muddled by conflicting information); PD regimen restricting flexibility and freedom (burden in budgeting time, confined to be close to home); strength with supportive relationships (gaining reassurance with practical assistance, comforted by considerate health professionals, supported by family and friends); defying constraints (reclaiming the day, undeterred by treatment, refusing to be defined by illness); regaining lost vitality (enabling physical functioning, restoring energy for life participation); and personal growth through adjustment (building resilience and enabling positive outlook, accepting the dialysis regimen).

Conclusions: Understanding the rationale behind lifestyle restrictions, practical assistance and family support in managing PD promoted patient empowerment, whereas being constrained in time and capacity for life participation outside the home undermined it. Education, counseling and strategies to minimize the disruption and burden of PD may enhance satisfaction and outcomes in patients requiring PD.

Keywords: chronic kidney disease; patient empowerment; peritoneal dialysis; quality of life.

Publication types

Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Adult
Aged
Aged, 80 and over
Caregivers / psychology*
Female
Focus Groups*
Humans
Life Style*
Male
Middle Aged
Patient Participation / methods*
Patient Participation / psychology*
Peritoneal Dialysis / psychology*
Self-Management / methods
Self-Management / psychology*
Treatment Outcome
Young Adult

Abstract

Publication types

MeSH terms

Grants and funding