JMIR Publications

ABSTRACT

Background:

While it can be rewarding to provide care for a person with serious illness, care partners are often unprepared to manage and cope with the physical and emotional stresses that arise with disease progression and bereavement.

Objective:

Our objective was to evaluate membership enrollment, engagement, and experiences within a web-based peer support network for active and bereaved care partners of people with serious illness.

Methods:

We conducted a formative evaluation of the ConnectShareCare peer-to-peer web-based support network. The network targeted care partners of people with a serious illness residing in the northeastern United States. Recruitment methods included marketing postcards, flyers, and listserv messages and referrals from community stakeholders, peers, and clinicians. Enrollment occurred through a self-guided, web-based process. Study participants included members enrolled in ConnectShareCare between April 2021-June 2023. We used the network’s analytics dashboard (e.g., registration, usage, and notification logs) to evaluate membership enrollment and engagement in discussions. We used anonymous surveys of a subset of members to assess experiences, including satisfaction, ability to find meaning by supporting others, and value and opportunities for improvement.

Results:

Over two years, the network enrolled 250 members, with an average of nine new members per month. Among 193 members providing information, most (58%, n=112) identified as active care partners, 17% (n=33) identified as bereaved care partners, and 27% (n=52) identified as another role. On average, 19 members posted per month resulting in 166 member posts/month. Two-thirds of members (n=164) did not post, 20% (n=50) posted 1-10 times, 6% posted 11-25 times (n=14), 6% posted 26 to 100 times (n=15), and 3% (n=7) posted more than 100 times. The most frequent discussion topics focused on check-ins and sources of joy and hope. Moderators (1 community manager, 2 volunteer mentors, and 2 project team members) supported members with an average of 111 posts per month. Among 21 network members that completed a research survey, 63% (n=12) reported connecting with at least one person and 53% (n=10) reported that ConnectShareCare helped them find meaning and purpose by supporting others. Most reported satisfaction with support (67%, n=12) and information (79%, n=15) through the network. Although most noted that ConnectShareCare was easy to use (55%, n=11), respondents were less likely to easily find information they were seeking (37%, n=7). Survey respondents found value in peer connection and support and identified opportunities to improve navigation of resources and engagement of members.

Conclusions:

Care partners of people with serious illness can use a web-based peer support network to find meaningful and useful support and information. Additional work is needed to identify the impact of the network on distress, social connectivity, and support programming.