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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.
Sinclair, Marlene; McCullough, Julie Em; Elliott, David; Latos-Bielenska, Anna; Braz, Paula; Cavero-Carbonell, Clara; Jamry-Dziurla, Anna; João Santos, Ana; Páramo-Rodríguez, Lucía.
Afiliación
  • Sinclair M; Institute of Nursing and Health Research, Ulster University, Newtownabbey, Northern Ireland, United Kingdom.
  • McCullough JE; Institute of Nursing and Health Research, Ulster University, Newtownabbey, Northern Ireland, United Kingdom.
  • Elliott D; Redburn Solution Ltd, Belfast, United Kingdom.
  • Latos-Bielenska A; Department of Medical Genetics, Poznan University of Medical Sciences, Poznan, Poland.
  • Braz P; Epidemiology Department, National Institute of Health Doctor Ricardo Jorge, Lisbon, Portugal.
  • Cavero-Carbonell C; Rare Diseases Research Unit, Foundation for the Promotion of Health and Biomedical Research in the Valencian Region, Valencia, Spain.
  • Jamry-Dziurla A; Department of Medical Genetics, Poznan University of Medical Sciences, Poznan, Poland.
  • João Santos A; Epidemiology Department, National Institute of Health Doctor Ricardo Jorge, Lisbon, Portugal.
  • Páramo-Rodríguez L; Public Health Research Centre, National School of Public Health, Nova University Lisbon, Lisbon, Portugal.
J Med Internet Res ; 21(11): e15847, 2019 11 25.
Article en En | MEDLINE | ID: mdl-31763986
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.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Padres / Disrafia Espinal / Labio Leporino / Fisura del Paladar / Síndrome de Down / Medios de Comunicación Sociales / Cardiopatías Congénitas Tipo de estudio: Qualitative_research Aspecto: Ethics Límite: Adult / Female / Humans / Male Idioma: En Revista: J Med Internet Res Asunto de la revista: INFORMATICA MEDICA Año: 2019 Tipo del documento: Article País de afiliación: Reino Unido Pais de publicación: Canadá

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Padres / Disrafia Espinal / Labio Leporino / Fisura del Paladar / Síndrome de Down / Medios de Comunicación Sociales / Cardiopatías Congénitas Tipo de estudio: Qualitative_research Aspecto: Ethics Límite: Adult / Female / Humans / Male Idioma: En Revista: J Med Internet Res Asunto de la revista: INFORMATICA MEDICA Año: 2019 Tipo del documento: Article País de afiliación: Reino Unido Pais de publicación: Canadá