Exploring the Types of Social Support Exchanged by Survivors of Pediatric Stroke and Their Families in an Online Peer Support Community: Qualitative Thematic Analysis (Preprint)

Abstract

BACKGROUND Pediatric stroke is relatively rare, under researched and there is little awareness of its occurrence in wider society. There is a paucity of literature on effectiveness of interventions to improve rehabilitation and services available to survivors. Access to online health communities through the internet may be a means of support for pediatric stroke patients and their families during recovery, however little research has been done in this area. OBJECTIVE To identify the types of social support provided by an online peer support group to survivors of pediatric stroke and their families. METHODS Qualitative thematic analysis of posts from a pediatric stroke population on a UK online stroke community active between 2004-2011. The population was split into two groups, based upon whether stroke survivors were 18 and under ( 18y) or over 18 (>18y) at the time of posting. The posts were read by two authors who used the adapted Social Support Behaviour Code to analyze the types of social support exchanged. RESULTS 52 participants who experienced a pediatric stroke were identified, who posted a total of 425 messages to the community. 41 survivors were  18y at the time of posting and written about by others (31/35 mothers), while 11 were >18y and writing about themselves. Survivors and their familes joined together in discussion threads . Support was offered and received by all participants, regardless of age. Of all 425 posts, 193 (45.4%) contained at least one instance of social support. All five types of social support were identified: informational, emotional, network, esteem support and tangible aid. Informational and emotional support were most commonly exchanged. Emotional support was offered more often than informational support among participants  18y at the time of posting, this finding was reversed in the >18y group. Network support and esteem support were less commonly exchanged. Notably, no access support (a sub-category of network support) was exchanged on the community. Tangible aid was the least commonly type of support offered. CONCLUSIONS We found evidence of engagement of childhood stroke survivors and their families in an online stroke community, with peer support being exchanged between both long and short-term survivors of pediatric stroke. Engagement of long-term survivors of pediatric stroke through the online community was key as they were able to offer informational support from lived experience. Further interventional research is needed to assess health and rehabilitation outcomes from engagement with online support groups. Research is also needed to ensure safe, nurturing online communities. CLINICALTRIAL n/a