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.

Highlights

  • BackgroundThe European Commission [1] highlights the value of using social media for communication and engagement with the public and acknowledges that it is a “beneficial tool to connect with others” and to “find new research partners.” Parents require health-related information about their children [2], and an increasing number seek this information from the internet and on social media platforms [3,4,5], with many going to online forums to discuss specific issues [6]

  • The inclusion of the State-Trait Anxiety Inventory (STAI) for screening purposes demonstrated to parents that the ConnectEpeople research team cared about their health and well-being:

  • The mean STAI scores across all 4 congenital anomaly congenital heart defects (CHD) (CA) were below the cutoff score identified for use in this project, and all parents who were screened were invited to take part

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Summary

Introduction

BackgroundThe European Commission [1] highlights the value of using social media for communication and engagement with the public and acknowledges that it is a “beneficial tool to connect with others” and to “find new research partners.” Parents require health-related information about their children [2], and an increasing number seek this information from the internet and on social media platforms [3,4,5], with many going to online forums to discuss specific issues [6]. Parents require health-related information about their children [2], and an increasing number seek this information from the internet and on social media platforms [3,4,5], with many going to online forums to discuss specific issues [6]. This is true for parents who have a child with a chronic health condition [7]. Across Europe, awareness of the benefits of patient and public involvement (PPI) in health care research is rapidly increasing [10]. 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

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