Using Social Media as a Research Tool for a Bespoke Online Platform for Stakeholders of Children With Congenital Anomalies: Development Study

Marlene Sinclair, Julie Mc Cullough, David Elliott, Paula Braz, Clara Cavero-Carbonell, Lesley Dornan, Anna Jamry-Dziurla , Ana João Santos, Anna Latos-Bielenska , Ausenda Machado, Lucia Páramo-Rodríguez

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Background: Limited research evidence exists on the development of online platforms for reciprocal communication, coproduction research, and dissemination of information between parents, professionals and researchers. The purpose of this paper is to share learning and the outcomes from setting up a bespoke, online platform, using social media.
Objective: To explore the establishment of an, online, multi-contextual research communication platform for parents and stakeholders of children with congenital anomalies using social media, and identification of associated research, ethical and technical challenges.
Methods: The ConnectEpeople electronic forum (e-forum) was developed using social media platforms using a stakeholder engagement process. A multi-level approach was implemented for reciprocal engagement between parents of children with CAs, researchers, healthcare professionals and other stakeholders using private and invisible and public Facebook groups, closed Twitter groups and YouTube. Ethical approval was obtained from Ulster University.
Results: Non-profit organisations (N=128) were invited to engage with an initial response rate of 16.4%. Of 105 parents contacted, 32 entered the private and invisible Facebook groups to participate in coproduction research. Public Facebook page followers rose to 215, 22 posts had an engagement over 10% and 34 posts had a reach of over 100. Webinars included requested information on childhood milestones and behaviour. YouTube coverage included 106 ConnectEpeople videos with 28708 impressions. Project information was accessed from 35 countries. The highest Facebook activity occurred in the early hours of the morning. Achievement of these results required dedicated time management, social media expertise, creativity and sharing knowledge to curate valuable content.
Conclusions: Building and maintaining a multi-layered web-based forum for coproduction and information sharing is challenging. Technical considerations include understanding the functionality and versatility of social media metrics. Social media offers valuable easily accessible quantitative and qualitative data that can drive the reciprocal process of forum development. The identification and integration of the needs of the ConnectEpeople e-forum was a key driver in the dissemination of useful, meaningful and accessible information. The necessary dedicated administration to respond to requests and posts, and collate data required significant time and effort. Participant safety, the development of trust and maintenance of confidentiality was a major ethical consideration. Discussions on social media platforms enabled parents to support each other and their children. Social media platforms are particularly useful in the identification of common family needs related to early childhood development. This research approach was challenging but resulted in valuable outputs requiring further application and testing. This may be of particular importance in response to coronavirus disease 2019 (COVID-19) or future pandemics. Incorporating flexible, adaptable social media strategies into research projects is recommended to develop effective platforms for collaborative and impactful research and dissemination.
Original languageEnglish
JournalJournal of Medical Internet Research Pediatrics and Parenting
Publication statusAccepted/In press - 1 Aug 2021


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