| Title | Meaning of empowerment in peritoneal dialysis: focus groups with patients and caregivers |
| Authors | Baumgart, Amanda Manera, Karine E. Johnson, David W. Craig, Jonathan C. Shen, Jenny, I Ruiz, Lorena Wang, Angela Yee-Moon Yip, Terence Fung, Samuel K. S. Tong, Matthew Lee, Achilles Cho, Yeoungjee Viecelli, Andrea K. Sautenet, Benedicte Teixeira-Pinto, Armando Brown, Edwina A. Brunier, Gillian Dong, Jie Scholes-Robertson, Nicole Dunning, Tony Mehrotra, Rajnish Naicker, Saraladevi Pecoits-Filho, Roberto Perl, Jeffrey Wilkie, Martin Tong, Allison |
| Affiliation | Univ Sydney, Sydney Sch Publ Hlth, Sydney, NSW, Australia Childrens Hosp Westmead, Ctr Kidney Res, Sydney, NSW, Australia Princess Alexandra Hosp, Dept Nephrol, Brisbane, Qld, Australia Univ Queensland, Fac Med, Australasian Kidney Trials Network, Brisbane, Qld, Australia Univ Queensland, Ctr Kidney Dis Res, Princess Alexandra Hosp, Brisbane, Qld, Australia Univ Calif Los Angeles, Med Ctr, Div Nephrol & Hypertens, Los Angeles Biomed Res Inst Harbor, Torrance, CA 90509 USA Univ Hong Kong, Queen Mary Hosp, Dept Med, Hong Kong, Peoples R China Tung Wah Hosp, Dept Med, Hong Kong, Peoples R China Princess Margaret Hosp, Jockey Club Nephrol & Urol Ctr, Dept Med & Geriatr, Div Nephrol,Kowloon, Hong Kong, Peoples R China Pok Oi Hosp, Dept Med & Geriatr, Yuen Long, Hong Kong, Peoples R China Tuen Mun Hosp, Dept Med & Geriatr, Hong Kong, Peoples R China Univ Tours, Tours Hosp, Dept Nephrol Hypertens, Kidney Transplantat,Dialysis,SPHERE INSERM 1246, Tours, France Univ Nantes, Dept Nephrol Hypertens, Kidney Transplantat, Dialysis,Tours Hosp,SPHERE INSERM 1246, Tours, France Hammersmith Hosp, Imperial Coll, Renal & Transplant Ctr, London, England Sunnybrook Hlth Sci Ctr, Sunnybrook Res Inst, Toronto, ON, Canada Peking Univ, Dept Med, Renal Div, Hosp 1, Beijing, Peoples R China South Bank Tech & Further Educ, Brisbane, Qld, Australia Univ Washington, Dept Med, Div Nephrol, Kidney Res Inst, Seattle, WA 98195 USA Univ Witwatersrand, Fac Hlth Sci, Sch Clin Med, Dept Internal Med, Johannesburg, South Africa Pontificia Univ Catolica Parana, Sch Med, Curitiba, Parana, Brazil Arbor Res Collaborat Hlth, Ann Arbor, MI USA Univ Toronto, Dept Med, Div Nephrol, St Michaels Hosp,Unity Hlth, Toronto, ON, Canada Sheffield Teaching Hosp Natl Hlth Serv Fdn Trust, Sheffield Kidney Inst, Sheffield, S Yorkshire, England |
| Keywords | STAGE RENAL-DISEASE THEMATIC SYNTHESIS PERSPECTIVES EXPERIENCE PROGRAM SUPPORT CARE |
| Issue Date | Nov-2020 |
| Publisher | NEPHROLOGY DIALYSIS TRANSPLANTATION |
| 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 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. |
| URI | http://hdl.handle.net/20.500.11897/599750 |
| ISSN | 0931-0509 |
| DOI | 10.1093/ndt/gfaa127 |
| Indexed | SCI(E) SSCI |
| Appears in Collections: | 第一医院 |
