166 - Perceptions of Social Media Interest Groups for Parents of Children with Rare Diseases: Are All Choices Supported Equally?

Poster Number: 166
Publication Number: 166.1516

Background: The pediatric rare disease community experiences unique obstacles to care, including the need to travel long distances to obtain care, limited clinical trials, medical teams that are unfamiliar with their diagnoses, feelings of isolation, and often life-limiting complications. In response to these challenges, social media (SM) has emerged as an important tool to connect families affected by pediatric rare disease. However, SM groups can be at risk of polarization and misinformation.

Objective: To determine the extent to which parents of children with rare disease are engaged with SM groups, are satisfied with SM interest groups both in the short and long-term, and whether SM groups are perceived as welcoming to different goals of care at the end of life.

Design/Methods: A 39-question survey was designed, pilot-tested with bereaved parents, and sent to bereaved families of children with rare disease who had died at a single institution between 7/1/19-7/1/22. Survey questions aimed to assess parents’ sources of support/information, engagement with SM, and impressions of SM interest groups at various points during their child’s illness. Surveys were entered into REDCap. Demographic information of participants (parents), and goals for their child at the end of life (comfort focused vs. pursuit of life prolonging measures) were also assessed. Analysis of survey results was performed using Fisher’s exact tests.

Results: 159 families met criteria over a 3-year period and were invited to participate. 29 out of 46 families who consented to participate completed the survey (63% response rate). 18% of families reported seeking information and 13% sought support from SM (Figure 1). Nearly half (49%) reported obtaining information from a combination of SM groups, blogs, and internet sites. Participants who engaged (65%) with SM found it generally helpful, though less supportive around and following the time of their child’s death, and more supportive of choices to pursue life-prolonging measures (Figure 2). There were no significant differences in perceptions of discrimination based on end-of-life care choices between families who chose comfort focused vs. life sustaining care at the end of their child’s life (Table 1). All families of children with a cardiac diagnosis (n=7) joined a SM group compared to only 50% of those with a genetic (n=7) or oncologic (n=3) diagnosis (p=0.06).

Conclusion(s): SM groups are an important resource for parents of children with rare disease, though they may not provide equal support to families based on goals of care or rare disease diagnosis.