JMIR Publications

ABSTRACT

Background:

There is limited research evidence on the development of online platforms for reciprocal communication, coproduction of research, support and dissemination of information between parents, professionals and researchers. Therefore, the purpose of this paper is to share the learning from setting up a bespoke, online platform, using social media for research purposes.

Objective:

To explore the establishment of a user-friendly, online, multi-contextual research communication network for parents and stakeholders of children with congenital anomalies (CAs) using social media, and identification of associated technical, ethical and research challenges.

Methods:

Through a planned stakeholder engagement process the ConnectEpeople electronic forum (e-forum) was established. Parents were invited to participate in the project through trusted third parties. A multi-level approach was implemented for reciprocal engagement between parents of children with CAs, researchers, healthcare professionals and other stakeholders. This was achieved through secret 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 secret Facebook groups to participate in coproduction of research. The public Facebook followers rose to 215 with 22 posts that had an engagement over 10% and 34 posts had a reach of over 100. Popular webinars included requested information on childhood milestones and behaviour for children with congenital anomalies. YouTube coverage included 105 ConnectEpeople videos with 19584 impressions and 1008 views. Information regarding the project was accessed from 35 countries. The highest Facebook activity occurred in the early hours of the morning. Achievement of these results required a range of technical, ethical and research considerations through an iterative process that contributed to the management and development of the bespoke, multi-layered, online ConnectEpeople, e-forum.

Conclusions:

Building and maintaining a multi-layered web-based forum for coproduction poses a number of challenges. Technical considerations include the understanding of the functionality and versatility of social media metrics, however, social media offers a valuable form of quantitative data that can drive the reciprocal process of forum development. This requires the identification and integration of the needs of an online community to provide useful, meaningful and accessible information. The necessary dedicated administration to respond to requests and collate data requires significant time and effort. Ethical challenges include the need for participant safety, development of trust and maintenance of confidentiality. Research challenges include the building of relationships between stakeholders and discussions through social media platforms to enable 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 milestones. This research approach was challenging but it has resulted in valuable outputs that require further application and testing.