PMID- 30724737 OWN - NLM STAT- PubMed-not-MEDLINE LR - 20201001 IS - 1929-0748 (Print) IS - 1929-0748 (Electronic) IS - 1929-0748 (Linking) VI - 8 IP - 2 DP - 2019 Feb 6 TI - Development of a Web-Based Peer Support Program for Family Caregivers of Ventilator-Assisted Individuals Living in the Community: Protocol for a Pilot Randomized Controlled Trial. PG - e11827 LID - 10.2196/11827 [doi] LID - e11827 AB - BACKGROUND: Across Europe, Canada, Australia, and the United States, the prevalence of home mechanical ventilation (HMV) prevalence is 6.6-12.9 per 100,000. At-home ventilator-assisted individuals (VAIs) are often vulnerable and highly comorbid, requiring complex care. In Canada, most VAI care is provided by family, leading to poor health-related quality of life and increased caregiver burden. No supportive interventions or peer support programs are tailored to VAI caregivers. Owing to the financial, geographic, and time limitations, Web-based support delivery may especially meet VAI family caregiver needs. We have developed a peer mentor training and Web-based peer support program for VAI caregivers including information-sharing, peer-to-peer communication, and peer mentorship. OBJECTIVE: Study Stage 1 aims to (1) evaluate the face and content validity of the peer mentor training program and (2) investigate participant satisfaction. Study Stage 2 aims to evaluate (1) the feasibility of participant recruitment and Web-based program delivery; (2) acceptability, usability, and satisfactoriness; (3) experiences of caregivers and peer mentors with the Web-based peer support program; and (4) effect of the Web-based peer support program on caregiver health outcomes. METHODS: Study Stage 1: We will train 7 caregivers to act as peer mentors for the Web-based peer support program trial; they will complete questionnaires rating the utility of individual training sessions and the training program overall. Study Stage 2: We will recruit 30 caregiver peers for a pilot randomized controlled trial of the 12-week Web-based peer support program using a waitlist control; the program includes private chat, a public discussion forum, and weekly moderated chats. Caregiver peers will be randomized to the intervention or waitlist control group using a 1:1 ratio using Randomize.net. Both groups will complete pre- and postintervention health outcome questionnaires (ie, caregiving impact, mastery, coping, personal gain, positive affect, and depression). Caregiver peers in the intervention arm will only complete a program evaluation and will be invited to participate in an interview to provide insight into their experience. Peer mentors will be invited to participate in a Web-based focus group to provide insight into their experience as mentors. We will judge the feasibility per the number of recruitment and program delivery goals met, use analysis of covariance to compare health outcomes between intervention and control groups, and analyze qualitative data thematically. RESULTS: Peer mentor training was completed with 5 caregivers in July 2018. To date, 2 caregivers have beta-tested the website, and the Web-based peer support program trial will commence in September 2018. Results are expected by early 2019. CONCLUSIONS: This study will result in the production and initial evaluation of a rigorously developed, evidence- and stakeholder-informed Web-based peer training and peer support program for caregivers of VAIs residing at home. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/11827. CI - (c)Marina B Wasilewski, Mika Nonoyama, Craig Dale, Douglas A McKim, Jeremy Road, David Leasa, Roger Goldstein, Louise Rose. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 06.02.2019. FAU - Wasilewski, Marina B AU - Wasilewski MB AUID- ORCID: 0000-0003-1198-2292 AD - Lawrence S Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada. FAU - Nonoyama, Mika AU - Nonoyama M AUID- ORCID: 0000-0001-5323-9638 AD - Faculty of Health Sciences, University of the Ontario Institute of Technology, Oshawa, ON, Canada. FAU - Dale, Craig AU - Dale C AUID- ORCID: 0000-0002-5042-0332 AD - Lawrence S Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada. FAU - McKim, Douglas A AU - McKim DA AUID- ORCID: 0000-0003-0145-9705 AD - Rehabilitation and Sleep Laboratory, The Ottawa Hospital, Ottawa, ON, Canada. FAU - Road, Jeremy AU - Road J AUID- ORCID: 0000-0002-8084-1613 AD - The Lung Centre, Vancouver General Hospital, Vancouver, BC, Canada. FAU - Leasa, David AU - Leasa D AUID- ORCID: 0000-0001-5584-4030 AD - London Health Sciences Centre, London, ON, Canada. FAU - Goldstein, Roger AU - Goldstein R AUID- ORCID: 0000-0002-4236-043X AD - West Park Healthcare Centre, Toronto, ON, Canada. FAU - Rose, Louise AU - Rose L AUID- ORCID: 0000-0003-1700-3972 AD - Lawrence S Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada. AD - Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, King's College London, London, United Kingdom. AD - Sunnybrook Research Institute, Sunnybrook Health Sciences Centre, Toronto, ON, Canada. AD - Prolonged Ventilation Weaning Centre, Michael Garron Hospital, Toronto, ON, Canada. LA - eng PT - Journal Article DEP - 20190206 PL - Canada TA - JMIR Res Protoc JT - JMIR research protocols JID - 101599504 PMC - PMC6386648 OTO - NOTNLM OT - caregivers OT - intervention OT - mechanical ventilation OT - peer support COIS- Conflicts of Interest: None declared. EDAT- 2019/02/07 06:00 MHDA- 2019/02/07 06:01 PMCR- 2019/02/06 CRDT- 2019/02/07 06:00 PHST- 2018/08/03 00:00 [received] PHST- 2018/11/01 00:00 [accepted] PHST- 2018/10/24 00:00 [revised] PHST- 2019/02/07 06:00 [entrez] PHST- 2019/02/07 06:00 [pubmed] PHST- 2019/02/07 06:01 [medline] PHST- 2019/02/06 00:00 [pmc-release] AID - v8i2e11827 [pii] AID - 10.2196/11827 [doi] PST - epublish SO - JMIR Res Protoc. 2019 Feb 6;8(2):e11827. doi: 10.2196/11827.