(330) The formation of a virtual CF support group: Connecting with other parents’ experiences (CF COPE)

Background: Prior to the COVID-19 pandemic, families at a large pediatric CF Center expressed interest in participating in support groups through informal, verbal feedback during CF clinic visits. Many barriers existed related to CF guidelines restricting in-person contact, traveling to the hospital to attend, feasibility of attending groups regularly, and lack of technology. The COVID-19 pandemic drastically improved the availability of telecommunication which expanded options for support. This project involved the development and implementation of a formal virtual support group for caregivers of children recently diagnosed with CF.

Methods: The Psychosocial team (2 LCSWs, 2 Psychologists, 1 psychology trainee) developed a curriculum with themes and discussion topics for each session, which included: processing and sharing diagnosis story, mobilizing support, treatment fears and frustrations, and celebrating milestones and successes. Eligible group members were caregivers of babies diagnosed with CF who were in their first year of life. All eligible caregivers were emailed to assess interest and collect feedback that was used to inform implementation of the group. A total of 12 families were eligible for the first round of COPE group sessions and 14 families for the second round. The first cohort met bi-weekly, 90 min sessions, for 6 sessions. After the initial group adjustments were made based on feedback and participation. The second cohort met weekly for 4, 1-hour sessions. All participants were scheduled either on the LCSW or psychology schedule and joined each session via the institution’s HIPPA-secure virtual platform (Vidyo).

Results: The first COPE group sessions were held July 2020 – September 2020. Sixty-seven percent of eligible families expressed interest in participating (n=8). Fifty percent of families who expressed interest in the group attended at least one session (n=4). Each group session ranged from 1-4 families. The second COPE group sessions were held in October 2021. Sixty-four percent of eligible families expressed interest in participating (n=9). Forty-four percent of families who expressed interest in the group attended at least one session (n=4). Anecdotal evidence from the parent support groups have been overwhelmingly positive. Parents reported appreciating the social support and have begun to connect with each other outside of the group for ongoing social support.

Conclusions: COVID-19 and the increase in telemedicine expanded our ability to provide new and unique support to caregivers in a way that had not been feasible previously. Caregivers were engaged and reported experiencing reduced isolation and normalization of emotions and challenges related to having a baby with CF. Several barriers to offering support groups exist such as determining times that work for majority of families and interest in regular participation.

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