JMIR Publications

ABSTRACT

Background:

Across Europe, Canada, Australia, and the United States, prevalence of home mechanical ventilation (HMV) ranges from 6.6 to 12.0 per 100,000. Ventilator-assisted individuals (VAIs) living at home are often vulnerable and highly comorbid requiring complex care. In Canada, most care for VAIs is taken-on by their family, leading to poor health-related quality of life (HrQoL) and exceptional caregiver burden. Therefore, supportive interventions for this caregiver population are needed urgently. Peers are a key source of social support, mitigating caregiving-related declines in health and improving HrQoL by decreasing isolation, buffering stress, and increasing self-efficacy. Yet no peer support programs are tailored to VAI caregivers. Due to the financial, geographic, and time limitations, online support delivery may especially meet VAI family caregiver needs. We have developed a peer mentor training and online peer support program for VAI caregivers that includes information-sharing, peer-to-peer communication, and peer mentorship.

Objective:

Study Stage 1: a) to evaluate face and content validity of the peer mentor training program; and b) to investigate participant satisfaction. Study Stage 2: To evaluate a) feasibility of participant recruitment and online program delivery; b) acceptability, usability, and satisfactoriness; c) experiences of caregivers and peer mentors with the online peer support program; and d) effect of the online peer support program on caregiver health outcomes

Methods:

Study Stage 1: We will train 7 caregivers to act as peer mentors for the duration of the online peer support program trial. Peer mentors 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 control trial (RCT) of the 12-week online peer support program using a waitlist control. The online peer support program includes private chat, a public discussion forum, and weekly moderated chats. Caregiver peers will complete health outcome questionnaires (i.e. caregiving impact, mastery, coping, personal gain, positive affect, and depression) before and after the peer support program. Upon completion, caregiver peers (intervention arm only) will 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 virtual focus group to provide insight into their experience as mentors. We will judge feasibility based on the number of recruitment and program delivery goals met. We will use Analysis of Covariance (ANCOVA) to compare health outcomes between intervention and control groups. Thematic analysis will be used to analyze interview and focus group data.

Results:

Peer mentor training was completed with 5 caregivers in July 2018.

Conclusions:

To-date, two caregivers have beta-tested the website and the online peer support program trial will commence in September 2018. Clinical Trial: NCT03376711