A balance of cognitive rest and timely return to school need to be considered for returning any student to school after a concussion. Implementation of these new recommendations may be an important tool in prevention of prolonged absence from school and academic failure while supporting brain recovery.
BackgroundEfforts to involve parents and families in all aspects of research, from initiating the question through to dissemination and knowledge exchange, are increasing. While social media as a method for health communication has shown numerous benefits, including increasing accessibility, interactions with others, and access to health care information, little work has been published on the use of social media to enhance research partnerships.ObjectiveOur objective was to describe the development and evaluation of a Web-based research advisory community, hosted on Facebook and connecting a diverse group of parents of special needs children with researchers at CanChild Centre for Childhood Disability Research. The goal of this community is to work together and exchange knowledge in order to improve research and the lives of children and their families.MethodsThe Web-based Parents Participating in Research (PPR) advisory community was a secret Facebook group launched in June 2014 and run by 2 parent moderators who worked in consultation with CanChild. We evaluated its success using Facebook statistics of engagement and activity (eg, number of posts, number of comments) between June 2014 and April 2015, and a Web-based survey of members.ResultsThe PPR community had 96 participants (2 parent moderators, 13 researchers, and 81 family members) as of April 1, 2015. Over 9 months, 432 original posts were made: 155 (35.9%) by moderators, 197 (45.6%) by parents, and 80 (18.5%) by researchers. Posts had a median of 3 likes (range 0-24) and 4 comments (range 0-113). Members, rather than moderators, generated 64% (277/432) of posts. The survey had a 51% response rate (49/96 members), with 40 (82%) being parent members and 9 (18%) being researchers. The initial purpose of the group was to be an advisory to CanChild, and 76% (28/37) of parents and all the researchers (9/9) identified having an impact on childhood disability research as their reason for participating. A total of 58% (23/40) of parents and 56% (5/9) of researchers indicated they felt safe to share sensitive or personal information. While researchers shared evidence-based resources and consulted with families to get guidance on specific issues, there was an unexpected benefit of gaining an understanding of what issues were important to families in their daily lives. Parents felt a sense of belonging to this community where they could share their stories but also wanted more researcher participation and clarity on the purpose of the group.ConclusionsThe PPR community grew from inception to an established community with active engagement and knowledge exchange. Both parents and researchers described valuable experiences. Researchers should consider social media as a means of engaging families in all phases of research to ensure that research and its outcomes are meaningful to those who need it most.
Implementation of these new pediatric recommendations is an important addition to prevention of subsequent concussions during vulnerable recovery periods, with potential to facilitate recovery by preventing prolonged symptomatology, and secondary sequelae.
Although concussion in children is an increasing concern, it has been determined that the most comprehensive guidelines for management are focused on adults. These guidelines are primarily consensus-based and are not proven fact through quality research. Evidence concerning prolonged recovery patterns in youth and the impact of concussion on the developing brain suggest that pediatric guidelines should be more conservative than for adults. Therefore, pediatric-specific guidelines need to be developed for return to activity and return to school after MTBI/concussion.
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