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

Marlene Sinclair, Julie Mc Cullough, elliott david, latos-belinski anna, braz paula, Caverao-carbonell clara, Anna Jamry-Dziurla , Ana João Santos, Lucia Páramo-Rodríguez

Research output: Contribution to journalArticle

17 Downloads (Pure)

Abstract

BACKGROUND: Using 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. OBJECTIVE: This 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. METHODS: The 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. RESULTS: The 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. CONCLUSIONS: Social 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.

Original languageEnglish
Article numbere15847
Pages (from-to)1-11
Number of pages11
JournalJMIR
Volume21
Issue number11
DOIs
Publication statusPublished - 25 Nov 2019

Keywords

  • e-forum, social media, online survey, Facebook, STAI, Down Syndrome, Cleft Cleft Lip with or without cleft Palate, Congenital Heart Defects, Spina Bifida, parents, ocularcentrism
  • cleft lip with or without cleft palate
  • spina bifida
  • e-forum
  • Down syndrome
  • STAI
  • ocularcentrism
  • Web-based survey
  • coproduction
  • Facebook
  • social media
  • congenital heart defects
  • parents
  • Coproduction
  • Social media
  • Parents
  • Congenital heart defects
  • E-forum
  • Spina bifida
  • Cleft lip with or without cleft palate
  • Ocularcentrism

Fingerprint Dive into the research topics of 'Exploring Research Priorities of Parents Who Have Children With Down Syndrome, Cleft Lip With or Without Cleft Palate, Congenital Heart Defects, and Spina Bifida Using ConnectEpeople: A Social Media Coproduction Research Study'. Together they form a unique fingerprint.

  • Profiles

    No photo of Marlene Sinclair

    Marlene Sinclair

    Person: Academic

    Cite this