Exploring Research Priorities of Parents Who Have Children With Down Syndrome, Cleft Lip With or Without Cleft Palate, Congenital Heart Defects, or Spina Bifida Using ConnectEpeople: A Social Media Coproduction Research Study

Abstract

BackgroundUsing social media for research purposes is novel and challenging in terms of recruitment, participant knowledge about the research process, and ethical issues. This paper provides insight into the recruitment of European parents of children with specific congenital anomalies to engage in coproduction research by using social media. Secret Facebook groups, providing optimal security, were set up for newly recruited research-aware parents (RAPs) to communicate privately and confidentially with each other and for the research team to generate questions and to interpret findings.ObjectiveThis study aimed to use social media for the recruitment and engagement of parents in research and to determine the research priorities of parents who have children with Down syndrome, cleft lip with or without cleft palate, congenital heart defects, and spina bifida.MethodsThe design was exploratory and descriptive with 3 phases. Phase 1 included the recruitment of RAPs and generation of research questions important to them; phase 2 was a Web-based survey, designed using Qualtrics software, and phase 3 included analysis and ranking of the top 10 research questions using an adapted James Lind Alliance approach. Simple descriptive statistics were used for analysis, and ethical approval was obtained from the Ethics Filter Committee of the Institute of Nursing and Health Research, Ulster University.ResultsThe recruitment of 32 RAPs was a sensitive process, varying in the time taken to consent (mean 51 days). However, parents valued the screening approach using the State-Trait Anxiety Inventory as a measure to ensure their well-being (mean 32.5). In phase 1, RAPs generated 98 research questions. In phase 2, 251 respondents accessed the Web-based survey, 248 consented, and 80 completed the survey, giving a completeness rate of 32.3% (80/248). Most parents used social media (74/80, 92%). Social media, online forums, and meeting in person were ranked the most preferable methods for communication with support groups networks and charities. Most respondents stated that they had a good understanding of research reports (71/80, 89%) and statistics (68/80, 85%) and could differentiate among the different types of research methodologies (62/80, 78%). Phase 3 demonstrated consensus among RAPs and survey respondents, with a need to know the facts about their child’s condition, future health, and psychosocial and educational outcomes for children with similar issues.ConclusionsSocial media is a valuable facilitator in the coproduction of research between parents and researchers. From a theoretical perspective, ocularcentrism can be an applicable frame of reference for understanding how people favor visual contact.

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

“…As previously reported [ 1 ], in the coproduction research stage, 32 research aware parents (RAPs) were recruited from 9 European countries via their parent support organization (n=18), CA registry leader (RL; n=7), ConnectEpeople project survey (n=5), and the project public Facebook page (n=1) and by word of mouth (n=1). On average, parents had two discussions with the researcher before agreeing to participate.…”

“…This is the second paper from the ConnectEpeople project. The first paper reported on project recruitment and findings from coproduction research [ 1 ]. This second paper sets out to share the overall learning from the research, technical and ethical obstacles, challenges, and successes in developing the ConnectEpeople e-forum.…”

Feasibility of Social Media Recruitment for Orofacial Cleft Genetic Research

“…Studies on the use of SM by patients with rare diseases show that they seek out online groups for information, social support, and advice. 4,6-11 A 2020 study by Çinar et al found patients and families affected by OFCs share similar motivations for using SM support groups. 4 Two studies in 2018 identified learning about new research as an impetus for participation in OFC SM groups.…”

“…Traditional barriers, such as conflicting work and study center schedules or travel time, are not issues with SM-based recruitment, which allows patients to complete study surveys or sample collections on their own time in the privacy of their home. 6,11-21 In addition, studies that recruit via Facebook and other SM sites are consistently geographically diverse and typically demographically representative of the larger patient population. 17,21 Those studies that are not demographically representative tend to be overly white and female.…”

Coproduction in the management of individuals with cleft lip and palate in South Africa: the Ekhaya Lethu model

“…There is a significant literature on coproduction, focusing inter alia on conceptual models [ 1 , 2 , 8 ], enhancing the quality care of children with cystic fibrosis [ 9 ], coproduction in the design of oral health care services for older people [ 10 ], using coproduction to involve parents in defining research priorities on congenital anomalies [ 11 ], and the possibilities and challenges of co-production in health system-wide reforms [ 12 ]. More recently, Palmer has advocated for ‘a science of participation’, given the scholarly focus on coproduction [ 13 ].…”