We have adapted a peer training program developed by St. Jude’s Research Hospital (Memphis, TN, USA) for parents caring for a child with cancer [23], also recommended as a valuable resource by an existing peer support tool kit used for parents of technology-dependent children [16]. We selected this training program because of its focus on mentorship skill development (rather than peer-matching process and logistics) and the publicly available recorded training sessions. To ensure that our adapted training program has the face and content validity for our home VAI caregiver population, we will ask a minimum of 2 home VAI caregivers and 1 clinician that manages this patient population to review and make suggestions regarding content, structure, and delivery.

The original St. Jude’s peer training program consists of 4 in-person sessions and our Web-based mentor training program will reflect this. The four 1-hour sessions will cover the following topics: (1) peer mentorship basics (eg, family-centered care, where or how to obtain educational materials specific to HMV); (2) mentoring skills (eg, active listening and sharing stories); (3) boundary-setting (eg, mentor’s boundaries and value of boundaries); and (4) mentorship at the end-of-life, emergency situations, and wrap-up (eg, unique end-of-life circumstances, red flags, when to call for help, debriefing about training, and next steps for participating in evaluation). During each of the sessions, the trainer will go over the material and incorporate short “break-out sessions” that will allow participants to pause, reflect, and discuss new concepts and skills.

We will host mentor training sessions using GoToMeeting to facilitate Web-based attendance. GoToMeeting allows for high-definition video and high-quality audio, compatibility with desktops or tablets or phones, screen sharing, and video recording. This latter feature will enable recording of the training sessions and archiving on a secure server to inform future iterations of the training program.

The inclusion criteria for peer mentors are as follows: (1) age ≥18 years; (2) previous or current family caregiver for a community-residing VAI; (3) able to speak and read English; (4) access to a computer (with video and microphone) and a high-speed internet connection; and (5) available for training sessions. The exclusion criteria are as follows: (1) currently experiencing severe depression as indicated by a score of ≥10 on the Centre for Epidemiological Studies Short Depression scale during recruitment screening [24].

We will recruit caregivers from the provincial Ventilation Equipment Pool (Kingston, ON, Canada), and the long-term and home ventilation clinics of West Park Healthcare Centre (Toronto, ON, Canada). We will seek snowball referrals from clinician experts, professional societies, patient advocacy groups (eg, Muscular Dystrophy Canada), and through Twitter.

We will recruit 5-10 peer mentors for training. Purposive sampling based on the following criteria will be used to ensure sample diversity: (1) ventilator type (invasive: n=2; noninvasive: n=5); (2) diagnostic category [rapidly progressing disease (amyotrophic lateral sclerosis): n=2; nonrapidly progressing disease (Guillain-Barré syndrome, Myasthenia Gravis, and postpolio syndrome): n=2; variably progressing disease (muscular dystrophy): n=2]; (3) relationship to care-recipient (spouse: n=2; child: n=2; parent: n=1); and (4) sex (male: n=2; female: n=5).

Prior to training, we will ask peer mentors to complete a demographic questionnaire and rate their general health status (on a scale of 1-5; 1=very good, 5=Poor). Before and after the training program participation, we will ask peer mentors to complete the Mentoring Skills Inventory [25]; this questionnaire asks peer mentors to indicate whether they are very comfortable (“V”), moderately comfortable (“M”), or uncomfortable (“U”) with 12 mentoring skills (eg, brokering relationships; coaching; goal-setting; managing conflict; providing and receiving feedback) [25,26]. After each training session, we will ask peer mentors to complete a short questionnaire rating the extent to which they agree with a series of questions about the design, content, instruction, and utility of the training session on a 5-point Likert scale (1=strongly disagree; 5=strongly agree). In addition, they will be asked to comment on what they benefited from most, what was unclear, and what would benefit from additional content. Any mentor(s) identified as needing clarification or additional training will be followed up with on an individual basis. We will ask peer mentors to complete an end-of-training questionnaire rating their satisfaction with the training overall (eg, objectives clearly defined and trainers knew material) on a 5-point Likert scale (1=strongly agree; 5=strongly disagree). Furthermore, they will be asked to comment on which training sessions they found most or least informative and to provide any suggestions for future iterations of the peer mentor training program.

We will report descriptive statistics from individual training session questionnaires and the end-of-training questionnaires, including counts and proportions for categorical data and means and SDs (or medians and interquartile ranges), depending on the distribution of continuous data.

We will conduct a pilot randomized controlled trial (RCT) of the 12-week Web-based peer support program with waitlist control. Research Ethics Board approval was received from the University of Toronto in May 2017, where the research is being conducted.

While the online peer support intervention is Web based, the study is being hosted at the University of Toronto. Recruitment is limited to Canadian caregivers of VAIs.

The inclusion and exclusion criteria for the peer mentor training also apply to participants for the Web-based peer support program feasibility RCT except needing to be currently providing care to a VAI living at home.

The end goal for this development project was to create a “social-network” style website (akin to Facebook). This website would also need to digitally capture and record all interactions between participants. To provide all the functionality needed for this study (including interaction data capture), we found that nonproprietary “off-the-shelf” software programs or templates were insufficient. Therefore, we used a hybrid of “existing-base-software” coupled with code or programming designed and integrated into this base software, making the functionality of this website unique.

The content and design of the Web-based peer support program were informed by a scoping review led by the first author [20], a local peer support tool kit [16], and a provincial peer support program [27]. The 12-week Web-based peer support program entails the following: (1) informational resources (links to relevant websites and resources—eg, national disease and caregiving organizations); (2) discussion forum open to caregiver peers and peer mentors enabling asynchronous contact; (3) weekly chat (live 1-hour forum for discussing a specific topics—eg, self-care, illness management moderated by the research team); and (4) private messaging, including audio, video, or text chat, allowing participants one-on-one or select group interaction with other caregiver peers or peer mentors. Private messaging is hidden from other participants but accessible to the research team for monitoring purposes. Every participant (peer mentors and caregiver peers) will create a personal profile with information about their caregiving situation (eg, who are or were caring for, ie, spouse, child, duration of care, diagnosis, etc). Based on the peer mentor profiles, caregiver peers will have the opportunity to access mentors they believe are well suited to address their support needs, questions, and concerns.

A blinded assessor will collect the demographic and health information from participants in both the intervention group and control group and administer the exploratory caregiver- reported measures (listed in Table 1) through email or over the phone (as per the participants’ preference). Our research team has previously used this battery of questionnaires identifying that completion takes approximately 30-40 minutes.

We will ask participants (intervention arm only) to complete a program evaluation (through telephone or email, depending on preference). The program evaluation will assess the acceptability through a series of questions (eg, about the helpfulness of the program, how likable program was; 5-point Likert scale; generally, 1=very unacceptable; 5=very acceptable). The evaluation will assess satisfaction by asking participants the extent to which they agree with a series of questions about the program content, delivery, and outcomes (5-point Likert scale; 1=disagree; 5=agree) [45]. Finally, the evaluation will assess the usability by asking participants the extent to which they agree with a series of questions about the usability of various program features (5-point Likert scale; 1=strongly disagree; 5=strongly agree) [46]. We will invite participants to complete a semistructured qualitative interview to further explore their experience with the peer support program (eg, which features were most beneficial, what aspects were most challenging, what can be improved, what should be kept the same) and their perspectives on the support received from peers (eg, quality of support, influence on their caregiving experience). We will host 1-2 focus groups with the peer mentors using GoToMeeting. Using a semistructured interview guide, we will explore their experiences and perspectives of the Web-based program as trained peer mentors. Furthermore, we will audiorecord interviews and focus groups and transcribe verbatim.