Abstract WP406: The Importance of Pediatric Stroke Family Support

Abstract

Introduction: Insufficient social support has been linked to increased morbidity and mortality within adult medical conditions, including stroke. There is little evidence about the influence of support groups in pediatric stroke survivors and their families. Hypothesis: We hypothesized that pediatric stroke survivors and their families would report several common psychosocial themes surrounding their recovery, and would derive benefit from a structured support group. Methods: Our pediatric stroke support group - associated with a large, regional, pediatric stroke program - was established in 2011. Qualitative and quantitative data from this group were collected via standardized questionnaires during three support group sessions over a 1 year period (2013-14). Data were clustered by survivor, parent, sibling, and other family members. A concurrent triangulation mixed methods approach was used for analysis with a P-value of < 0.05 considered significant. Results: Participants reported primary themes of fear, anxiety, and frustration about 1) recovery (i.e., future disabilities, regaining milestones); 2) recurrence; 3) limited resources to aid in recovery; 4) medical and family decision-making; and 5) normalcy in the community. Time interval from stroke (r= 0.49) and disability (r=0.71) were inversely correlated with fear, anxiety, and frustration (p<0.01). In addition, perception of sufficient family support (r=0.56) and longer participation in rehabilitation (r=0.63) were emotionally beneficial (p<0.01). All participants reported the importance of the support group; of significance to parents was reassurance and knowledge offered from families with similar experiences. Conclusion: Pediatric stroke not only impacts the patient’s life experience, but that of their family members. The stroke experience is very individualized, but common themes exist. Sharing these experiences is valuable to survivors and their families.