Providing social support for adults with cystic fibrosis during the COVID-19 pandemic: Pilot study of a web-based support group

Introduction: Heightened anxiety and social isolation were experienced among our Northwell Health adult cystic fibrosis (CF) population during the first wave of the COVID-19 pandemic in New York. To mitigate this, clinical staff implemented a web-based support group. Herein, we compare pre/post psychosocial factors and knowledge among participants. Methods: Adults from Northwell Health's CF Clinic participated in a 10-session, CF social worker-moderated, live, web-based support group study comprised of 6 open and 4 topic-based sessions covering: pre-lung transplant preparation, anxiety/mental health, nutrition, and a presentation by a lung transplant team. Participants completed baseline surveys: demographics and needs assessment, baseline/final session: GAD-7(anxiety), PHQ-9(depression), UCLALS(UCLA Loneliness Scale), and COVID-19 Impact Scale, pre/post topic session knowledge tests, and a 1-time final assessment. Sessions were audio recorded and transcribed for content analysis. Results: Between May 14-September 24, 2020, 9 CF adults (6 female/3 male) participated. Average pre-support group needs assessment scores showed most participants believed there was greater need for support, education and social interaction for CF adults (12.77/total score 15). Baseline/final scores showed average improvement for anxiety, depression and COVID-19 impact - decreased scores: GAD-7 (7.33/7.11), PHQ-9 (8/6.11) and COVID-19 impact (16.44/15.55), but increased loneliness: UCLALS (20.22/23.33), perhaps due to the toll of long-term quarantine. Pre/post knowledge scores from topic sessions showed slightly increased average scores for pre-lung transplant preparation (3.25/3.75/total score 4), nutrition guidelines (3.66/4/total score 4), and lung transplant team presentation (3.00/3.34/total score 4), but no change in CF anxiety/mental health knowledge (3.25/3.25/total score 4). Post-support group evaluations showed participants found the support group beneficial (68.11 out of total score of 80). Content analysis revealed participants' anxiety from family/friends not taking seriously COVID-19 risks to people with CF, and isolation from feeling “left behind” as the wider society reopened during summer months. Participants shared different COVID- 19 coping strategies (e.g., viewing opera online, meditation apps, outdoor exercise). Participants were concerned about the pandemic's toll on the well-being of their non-CF family members who were practicing strict social distancing to protect the CF person. While some participants had prior social interactions with other CF individuals, other participants stated they rarely/never interacted with other CF people and, therefore, expressed positive sentiments about their support group experiences. Conclusions: Our CF adult support group provided opportunities for social interaction and CF-specific education during the first wave of the COVD-19 pandemic, resulting in decreased anxiety and depression, and increased knowledge about CF treatment and long-term health. .