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Accepted for/Published in: Journal of Medical Internet Research

Date Submitted: Aug 14, 2019
Date Accepted: Sep 30, 2019

The final, peer-reviewed published version of this preprint can be found here:

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

Sinclair M, McCullough JEM, Elliott D, Latos-Bieleńska A, Braz P, Cavero-Carbonell C, Jamry-Dziurla A, João Santos A, Páramo-Rodríguez L

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

J Med Internet Res 2019;21(11):e15847

DOI: 10.2196/15847

PMID: 31763986

PMCID: 6902131

ConnectEpeople: A social-media-based study exploring research priorities of children with Down Syndrome, Cleft Lip with or without cleft Palate, Congenital Heart Defects and Spina Bifida

  • Marlene Sinclair; 
  • Julie E. M. McCullough; 
  • David Elliott; 
  • Anna Latos-Bieleńska; 
  • Paula Braz; 
  • Clara Cavero-Carbonell; 
  • Anna Jamry-Dziurla; 
  • Ana João Santos; 
  • Lucía Páramo-Rodríguez

ABSTRACT

Background:

Using social media for research purposes is novel and challenging in terms of recruitment and ethical issues. This paper provides insight into the recruitment of European parents of children with specific congenital anomalies to engage in co-production research by using social media. A secret Facebook Page, providing optimal security, was set up for newly recruited Research Aware Parents (RAPs) to communicate privately and confidentially with each other and the research team to generate questions and to interpret findings.

Objective:

To use social media for recruitment and engagement of parents in research and to determine 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 three phases. Phase 1, recruitment of RAPs and generation of research questions important to them, Phase 2, an online survey, designed using Qualtrics software exploring responses to RAPs research questions, and Phase 3, analysis and ranking of the top 10 research questions using the James Lind Alliance approach. Simple descriptive statistics were used for analysis and ethical approval was obtained from Ulster University, Institute of Nursing and Health Research, Ethics Filter Committee.

Results:

Recruitment of 32 RAPs was a sensitive process, variable 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 wellbeing (mean = 32.5). In Phase 1, RAPs generated 98 research questions. In Phase 2, 251 respondents accessed the online survey, 248 consented and 80 submitted the survey giving a completeness rate of 32%. The majority of parents used social media to assist them in finding answers to their questions about research related to their children’s needs and to connect with other parents and support organizations (n=74, 92%). Social media, online forums and meeting in person were ranked the most preferable methods for communication with support group(s) networks and charities. Most respondents stated they had a good understanding of research reports (n=71, 89%), statistics (n=68, 85%) and could differentiate between different types of research methodology (n=62, 78%). Phase 3, demonstrated consensus amongst RAPs and survey respondents with a need to know the facts about their child’s condition, future health, psychosocial and educational outcomes for children with similar issues.

Conclusions:

Social media is a valuable facilitator in the co-production of research between parents and researchers. Meeting in person remains important for relationship building and the face-to-face nature of social media has untapped potential for research purposes. From a theoretical perspective, ocularcentrism can be an applicable frame of reference for understanding how people favour visual contact and can find online meetings preferential in complex family circumstances.


 Citation

Please cite as:

Sinclair M, McCullough JEM, Elliott D, Latos-Bieleńska A, Braz P, Cavero-Carbonell C, Jamry-Dziurla A, João Santos A, Páramo-Rodríguez L

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

J Med Internet Res 2019;21(11):e15847

DOI: 10.2196/15847

PMID: 31763986

PMCID: 6902131

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