(284) “You’re not alone”: Implementation and challenges of a virtual CF parent group

Background: Cystic fibrosis (CF) is a genetic disorder with a high treatment burden that impacts all areas of a patient’s life. Most persons with CF are diagnosed as infants, and receiving the diagnosis can be a significant adjustment for parents and caregivers [1, 2]. Parents and caregivers of a newly diagnosed child may feel shock, anxiety, or grief [2]. They may feel overwhelmed or isolated, with varying degrees of prior CF knowledge [2]. In addition, parents of children with chronic disease are at increased risk of developing psychosocial issues and impairments in quality of life [3]. Accessing support can be difficult for parents and caregivers due to time constraints and caregiver burden, although web-based interventions have been found to be feasible and efficacious [3].

To improve support for parents and caregivers of newly diagnosed children with CF, a virtual peer support group was developed and conducted via a HIPAA-compliant online video platform. The goal of the group was to provide a formal means of support for parents and caregivers, while increasing peer support through connection with other CF parents and caregivers to whom they could relate.

Methods: Parents and caregivers of newly diagnosed infants and young children with CF were identified and invited to participate. The group met for six weekly sessions in April and May 2021. The Webex virtual platform was used and participants could join via cellphone, tablet, or computer. Sessions were moderated by the CF team psychologist. Group topics included adjustment, coping, and sharing experiences of time of diagnosis and managing CF. At the conclusion of the group, participants were sent an online survey to assess experience of the group and areas for improvement.

Results: Eight parents and caregivers were invited to participate and 7 attended at least one session. Age of attendees’ children with CF at time of first session ranged from 4 to 14 months old. Attendance varied from one to 5 participants, with an average of 4 per session. Five post-group survey responses were received. Results indicated 100% of respondents were strongly satisfied with the group. Challenges were parent availability and scheduling group times that a majority of participants could attend. Topics for future groups included: story sharing from members, inviting experienced CF parents as guests, practical tips, impact on family dynamics, and expectations for the future. See Table 1 for full survey responses.

Conclusions: A virtual group for parents and caregivers of newly diagnosed infants and young children can be an effective way to provide support and connection. Participants were strongly satisfied. Challenges of the group were scheduling and parent availability, and ways to address this should be considered for future groups.

Acknowledgements:

References: [1] Ernst MM, Johnson MC, Stark LJ. Developmental and psychosocial issues in cystic fibrosis. Child Adolesc Psychiatr Clin N Am. 2010;19(2):263-viii. doi:10.1016/j.chc.2010.01.004

[2] Havermans T, Tack J, Vertommen A, Proesmans M, de Boeck K. Breaking bad news, the diagnosis of cystic fibrosis in childhood. J Cyst Fibros. 2015;14(4):540-546. doi:10.1016/j.jcf.2014.12.005

[3] Fidika A, Herle M, Lehmann C, Weiss C, Knaevelsrud C, Goldbeck L. A web-based psychological support program for caregivers of children with cystic fibrosis: a pilot study. Health Qual Life Outcomes. 2015;13:11. Published 2015 Feb 4. doi:10.1186/s12955-015-0211-y