This paper is in the following e-collection/theme issue:

Medicine 2.0: Social Media, Open, Participatory, Collaborative Medicine (1657) Research Priorities Setting (22) Participatory Design and Participatory Research (332) Disabilities (118) Children and Youth with Disabilities (54) Caregiving and Parenting for Chronic Pediatric Diseases (84) Social Media for Parenting (40)

Published on in Vol 21, No 11 (2019): November

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/15847, first published .
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

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

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

Authors of this article:

Marlene Sinclair1 Author Orcid Image ;   Julie EM McCullough1 Author Orcid Image ;   David Elliott2 Author Orcid Image ;   Anna Latos-Bielenska3 Author Orcid Image ;   Paula Braz4 Author Orcid Image ;   Clara Cavero-Carbonell5 Author Orcid Image ;   Anna Jamry-Dziurla3 Author Orcid Image ;   Ana João Santos4, 6 Author Orcid Image ;   Lucía Páramo-Rodríguez5 Author Orcid Image
Article Authors Cited by (11) Tweetations (51) Metrics

Journals

  1. Carlock G, Manning K, Leslie E. Feasibility of Social Media Recruitment for Orofacial Cleft Genetic Research. The Cleft Palate Craniofacial Journal 2022;59(6):701 View
  2. Bilal B, Chen P. Social Media and Instant Messaging. Annals of Plastic Surgery 2021;87(3):337 View
  3. Sinclair M, McCullough J, Elliott D, Braz P, Cavero-Carbonell C, Dornan L, Jamry-Dziurla A, João Santos A, Latos-Bieleńska A, Machado A, Páramo-Rodríguez L. Using Social Media as a Research Tool for a Bespoke Web-Based Platform for Stakeholders of Children With Congenital Anomalies: Development Study. JMIR Pediatrics and Parenting 2021;4(4):e18483 View
  4. Mossinger C, Manerkar K, Crowther C, Harding J, Groom K. Research priorities for maternal and perinatal health clinical trials and methods used to identify them: A systematic review. European Journal of Obstetrics & Gynecology and Reproductive Biology 2023;280:120 View
  5. Sivaratnam S, Hwang K, Chee-A-Tow A, Ren L, Fang G, Jibb L. Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review. Journal of Medical Internet Research 2022;24(2):e29821 View
  6. Sitzman T, Verhey E, Kirschner R, Pollard S, Baylis A, Chapman K. Cleft Palate Repair Postoperative Management: Current Practices in the United States. The Cleft Palate Craniofacial Journal 2024;61(5):827 View
  7. White V, Alexiadis M, Eroh K, Ackermann M, Rodgers S, Langdale L, Armour N, Jobling T, Fuller P, Chu S. How social media can help to understand treatment experiences of survivors of rare cancers: Findings from the Granulosa Cell Tumor Survivor Sisters Facebook group member survey. Cancer 2023;129(14):2224 View
  8. Gu S, Jiang Y, Liu M, Li Y, Liang Y, Feng R, Xu M, Wang F, Huang J. Eye movements and ERP biomarkers for face processing problems in avoidant attachment-style individuals. Frontiers in Behavioral Neuroscience 2023;17 View
  9. Lammers R, Tsachouridis G, Andersson M, Dormeus S, Ekerhult T, Frankiewicz M, Gunn C, Matuszewski M, de Mooij K, Schroeder R, Wyndaele M, Xing Z, De Kort L, de Graaf P. What should be next in lifelong posterior hypospadias: Conclusions from the 2023 ERN eUROGEN and EJP‐RD networking meeting. Neurourology and Urodynamics 2024;43(5):1097 View
  10. McCullough J, Sinclair M, Gillender J, McCrossan B, Slater P, Browne R, Casey F. Touching Technology—Parents’ Experiences of Remote Consultations for Children With Severe Congenital Cardiac Conditions: Quasi-Experimental Cohort Study. JMIR Pediatrics and Parenting 2024;7:e54598 View
  11. Sun J, Wang L, Wang W, Wang J, Wang Y, Gao Y, Yuan L. The influential factors of anxiety among caregivers of children with CL/P: a path analysis based on diathesis-stress theoretical model. BMC Public Health 2024;24(1) View