ConnectEpeople: A social-media-based forum for co-production research

Background: Parents who have children with congenital anomalies have expertise by experience and can play an important role in co-production research. However, they face challenges such as lack of time, child care needs and unexpected illness. Co-production research with such participants requires an effective engagement strategy. Social media platforms can provide the basis for reciprocal, real time discussion and sharing of valuable, high quality information between members.
Aims and objectives: The aim of this project was to build an e-forum based within social media known as ConnectEpeople to connect in co-production research with parents of children with congenital anomalies. Parents connection preferences and level of engagement with the e-forum was evaluated.
Methods: Parents of children with Down Syndrome, cleft lip with or without cleft palate, congenital heart defects and Spina Bifida in nine European countries were invited to take part by their local parent support group. Researchers contacted parents by their preferred method. Following screening and consent parents were invited to join condition specific secret Facebook groups, closed Twitter groups, follow a public Facebook page and complete an online survey. Research discussion questions were posted in the secret Facebook group. Information, events, new research, etc was posted on the public Facebook page and Twitter. Data was collected directly from social media. Ethical approval was obtained from the authors institution ethics committee.
Results: Parents (n=31) from six countries agreed to take part and preferred to be contacted via Skype for initial conversations regarding the project. They all joined the secret Facebook group; one parent agreed to join the closed Twitter group. Survey findings showed that parents need to know facts about their child’s condition, future health, psychosocial and educational outcomes. The public Facebook group had 206 followers, including participants, from 27 countries. Over 3000 people interacted with the public Facebook page with over 13000 engagements.
Conclusions: An e-forum for co-production research enables people who have limited time and are geographically distant to have their voices heard. Social media allows the sharing of relevant information tailored to the wants and needs of parents who have a child with complex needs creating impact and engagement and empowering communities.