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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

2019-11-25Journal article Open access
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dc.contributor.authorSinclair, Marlene
dc.contributor.authorMcCullough, Julie E.M.
dc.contributor.authorElliott, David
dc.contributor.authorLatos-Bielenska, Anna
dc.contributor.authorBraz, Paula
dc.contributor.authorCavero-Carbonell, Clara
dc.contributor.authorJamry-Dziurla, Anna
dc.contributor.authorJoão Santos, Ana
dc.contributor.authorPáramo-Rodríguez, Lucía
dc.date.accessioned2020-04-23T18:17:54Z
dc.date.available2020-04-23T18:17:54Z
dc.date.issued2019-11-25
dc.description.abstractBackground: 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.pt_PT
dc.description.sponsorshipThis project has received funding from the European Union’s Horizon 2020 research and innovation program under grant agreement number 733001.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationJ Med Internet Res. 2019 Nov 25;21(11):e15847. doi: 10.2196/15847pt_PT
dc.identifier.doi10.2196/15847pt_PT
dc.identifier.issn1439-4456
dc.identifier.urihttp://hdl.handle.net/10400.18/6502
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherJMIR Publicationspt_PT
dc.relationEUROlinkCAT: Establishing a linked European Cohort of Children with Congenital Anomalies
dc.relation.publisherversionhttps://www.jmir.org/2019/11/e15847/pt_PT
dc.rights.urihttp://creativecommons.org/licenses/by-nd/4.0/pt_PT
dc.subjectDown Syndromept_PT
dc.subjectFacebookpt_PT
dc.subjectSTAIpt_PT
dc.subjectWeb-based Surveypt_PT
dc.subjectCleft Lip with or without Cleft Palatept_PT
dc.subjectCongenital Heart Ddefectspt_PT
dc.subjectCoproductionpt_PT
dc.subjectE-forumpt_PT
dc.subjectOcularcentrismpt_PT
dc.subjectParentspt_PT
dc.subjectSocial Mediapt_PT
dc.subjectSpina Bifidapt_PT
dc.subjectEstados de Saúde e de Doençapt_PT
dc.subjectRENACpt_PT
dc.subjectObservação em Saúde e Vigilânciapt_PT
dc.subjectAnomalias Congénitaspt_PT
dc.titleExploring 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 Studypt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.awardTitleEUROlinkCAT: Establishing a linked European Cohort of Children with Congenital Anomalies
oaire.awardURIinfo:eu-repo/grantAgreement/EC/H2020/733001/EU
oaire.citation.issue11pt_PT
oaire.citation.startPagee15847pt_PT
oaire.citation.titleJournal of Medical Internet Researchpt_PT
oaire.citation.volume21pt_PT
oaire.fundingStreamH2020
project.funder.identifierhttp://doi.org/10.13039/501100008530
project.funder.nameEuropean Commission
rcaap.embargofctDe acordo com política editorial da revista.pt_PT
rcaap.rightsopenAccesspt_PT
rcaap.typearticlept_PT
relation.isProjectOfPublication97315a90-2dd0-46d9-8b7d-4bd6174285f9
relation.isProjectOfPublication.latestForDiscovery97315a90-2dd0-46d9-8b7d-4bd6174285f9

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