Amanda Baumgart1,2, Karine E Manera1,2, David W Johnson3,4,5, Jonathan C Craig1,2, Jenny I Shen6, Lorena Ruiz6, Angela Yee-Moon Wang7, Terence Yip8, Samuel K S Fung9, Matthew Tong10, Achilles Lee11, Yeoungjee Cho3,4,5, Andrea K Viecelli3,4, Benedicte Sautenet2,12, Armando Teixeira-Pinto1,2, Edwina A Brown13, Gillian Brunier14, Jie Dong15, Nicole Scholes-Robertson1,2, Tony Dunning16, Rajnish Mehrotra17, Saraladevi Naicker18, Roberto Pecoits-Filho19,20, Jeffrey Perl21, Martin Wilkie22, Allison Tong1,2. 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.
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.
Authors: Jack Kit-Chung Ng; Gordon Chun-Kau Chan; Kai Ming Chow; Winston Fung; Wing-Fai Pang; Man-Ching Law; Chi Bon Leung; Philip Kam-Tao Li; Cheuk Chun Szeto Journal: Perit Dial Int Date: 2020-01 Impact factor: 1.756