A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study.

Autor:	O'Donnell EA; Communications, Marketing and Community Health, Alice Peck Day Memorial Hospital, Lebanon, NH, United States.; The Dartmouth Institute for Health Policy & Clinical Practice, Geisel School of Medicine at Dartmouth, Lebanon, NH, United States., Van Citters AD; The Dartmouth Institute for Health Policy & Clinical Practice, Geisel School of Medicine at Dartmouth, Lebanon, NH, United States., Khayal IS; The Dartmouth Institute for Health Policy & Clinical Practice, Geisel School of Medicine at Dartmouth, Lebanon, NH, United States.; Dartmouth Cancer Center, Geisel School of Medicine, Dartmouth, Lebanon, NH, United States., Wilson MM; Palliative Medicine, Geisel School of Medicine at Dartmouth, Lebanon, NH, United States.; Section of Palliative Medicine, Dartmouth Health, Lebanon, NH, United States., Gustafson D; College of Engineering, University of Wisconsin, Madison, WI, United States., Barnato AE; The Dartmouth Institute for Health Policy & Clinical Practice, Geisel School of Medicine at Dartmouth, Lebanon, NH, United States.; Palliative Medicine, Geisel School of Medicine at Dartmouth, Lebanon, NH, United States.; Section of Palliative Medicine, Dartmouth Health, Lebanon, NH, United States., Buccellato AC; Dartmouth Cancer Center, Geisel School of Medicine, Dartmouth, Lebanon, NH, United States., Young C; Mayo Clinic Connect, Mayo Clinic, Rochester, MN, United States., Holthoff MM; The Dartmouth Institute for Health Policy & Clinical Practice, Geisel School of Medicine at Dartmouth, Lebanon, NH, United States., Korsunskiy E; Thayer School of Engineering, Dartmouth College, Hanover, NH, United States., Tomlin SC; Patient and Family Advisors, Dartmouth Health, Lebanon, NH, United States., Cullinan AM; Palliative Medicine, Geisel School of Medicine at Dartmouth, Lebanon, NH, United States.; Section of Palliative Medicine, Dartmouth Health, Lebanon, NH, United States., Steinbaugh AC; Section of Palliative Medicine, Dartmouth Health, Lebanon, NH, United States., Hinson JJ; Patient and Family Advisors, Dartmouth Health, Lebanon, NH, United States., Johnson KR; Section of Palliative Medicine, Dartmouth Health, Lebanon, NH, United States., Williams A; Patient and Family Advisors, Dartmouth Health, Lebanon, NH, United States., Thomson RM; Palliative Medicine, Geisel School of Medicine at Dartmouth, Lebanon, NH, United States.; Section of Palliative Medicine, Dartmouth Health, Lebanon, NH, United States., Haines JM; Patient and Family Advisors, Dartmouth Health, Lebanon, NH, United States., Holmes AB; Patient and Family Advisors, Dartmouth Health, Lebanon, NH, United States., Bradley AD; Patient and Family Advisors, Dartmouth Health, Lebanon, NH, United States., Nelson EC; The Dartmouth Institute for Health Policy & Clinical Practice, Geisel School of Medicine at Dartmouth, Lebanon, NH, United States., Kirkland KB; The Dartmouth Institute for Health Policy & Clinical Practice, Geisel School of Medicine at Dartmouth, Lebanon, NH, United States.; Palliative Medicine, Geisel School of Medicine at Dartmouth, Lebanon, NH, United States.; Section of Palliative Medicine, Dartmouth Health, Lebanon, NH, United States.
Jazyk:	angličtina
Zdroj:	JMIR human factors [JMIR Hum Factors] 2024 May 08; Vol. 11, pp. e53194. Date of Electronic Publication: 2024 May 08.
DOI:	10.2196/53194
Abstrakt:	Background: Care partners of people with serious illness experience significant challenges and unmet needs during the patient's treatment period and after their death. Learning from others with shared experiences can be valuable, but opportunities are not consistently available. Objective: This study aims to design and prototype a regional, facilitated, and web-based peer support network to help active and bereaved care partners of persons with serious illness be better prepared to cope with the surprises that arise during serious illness and in bereavement. Methods: An 18-member co-design team included active care partners and those in bereavement, people who had experienced serious illness, regional health care and support partners, and clinicians. It was guided by facilitators and peer network subject-matter experts. We conducted design exercises to identify the functions and specifications of a peer support network. Co-design members independently prioritized network specifications, which were incorporated into an early iteration of the web-based network. Results: The team prioritized two functions: (1) connecting care partners to information and (2) facilitating emotional support. The design process generated 24 potential network specifications to support these functions. The highest priorities included providing a supportive and respectful community; connecting people to trusted resources; reducing barriers to asking for help; and providing frequently asked questions and responses. The network platform had to be simple and intuitive, provide technical support for users, protect member privacy, provide publicly available information and a private discussion forum, and be easily accessible. It was feasible to enroll members in the ConnectShareCare web-based network over a 3-month period. Conclusions: A co-design process supported the identification of critical features of a peer support network for care partners of people with serious illnesses in a rural setting, as well as initial testing and use. Further testing is underway to assess the long-term viability and impact of the network. (©Elizabeth A O’Donnell, Aricca D Van Citters, Inas S Khayal, Matthew M Wilson, David Gustafson, Amber E Barnato, Andrea C Buccellato, Colleen Young, Megan M Holthoff, Eugene Korsunskiy, Stephanie C Tomlin, Amelia M Cullinan, Alexandra C Steinbaugh, Jennifer J Hinson, Kristen R Johnson, Andrew Williams, Ruth M Thomson, Janet M Haines, Anne B Holmes, Ann D Bradley, Eugene C Nelson, Kathryn B Kirkland. Originally published in JMIR Human Factors (https://humanfactors.jmir.org), 08.05.2024.)
Databáze:	MEDLINE
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