Published on in Vol 15, No 1 (2013): January

Online Information Exchanges for Parents of Children With a Rare Health Condition: Key Findings From an Online Support Community

Online Information Exchanges for Parents of Children With a Rare Health Condition: Key Findings From an Online Support Community

Online Information Exchanges for Parents of Children With a Rare Health Condition: Key Findings From an Online Support Community

Journals

  1. DeHoff B, Staten L, Rodgers R, Denne S. The Role of Online Social Support in Supporting and Educating Parents of Young Children With Special Health Care Needs in the United States: A Scoping Review. Journal of Medical Internet Research 2016;18(12):e333 View
  2. Carter B, Bray L, Keating P, Wilkinson C. Parent-Driven Campaign Videos: An Analysis of the Motivation and Affect of Videos Created by Parents of Children With Complex Healthcare Needs. Comprehensive Child and Adolescent Nursing 2018;41(4):276 View
  3. Strekalova Y. Seekers and avoiders: Using health information orientation to explore audience segmentation. Journal of Communication in Healthcare 2014;7(3):228 View
  4. Dauman N, Haza M, Erlandsson S. Liberating parents from guilt: a grounded theory study of parents’ internet communities for the recognition of ADHD. International Journal of Qualitative Studies on Health and Well-being 2019;14(1):1564520 View
  5. French-Lawyer J, Siano S, Ioerger M, Young V, Turk M. Health information seeking and people with disability: A systematic search and scoping review. Disability and Health Journal 2021;14(1):100983 View
  6. Petrini F, Graziani E, Caputo M, Meringolo P. Continuum between Relational and Therapeutic Models of Self‐help in Mental Health: A Qualitative Approach. American Journal of Community Psychology 2020;65(3-4):290 View
  7. Tozzi A, Mingarelli R, Agricola E, Gonfiantini M, Pandolfi E, Carloni E, Gesualdo F, Dallapiccola B. The internet user profile of Italian families of patients with rare diseases: a web survey. Orphanet Journal of Rare Diseases 2013;8(1):76 View
  8. Diefenbeck C, Klemm P, Hayes E. Emergence of Yalom's Therapeutic Factors in a Peer-Led, Asynchronous, Online Support Group for Family Caregivers. Issues in Mental Health Nursing 2014;35(1):21 View
  9. Schwieger T, Campo S, Steuber K, Weinstein S, Ashida S. An exploration of information exchange by adolescents and parents participating in adolescent idiopathic scoliosis online support groups. Scoliosis and Spinal Disorders 2016;11(1) View
  10. Willis E, Royne M. Online Health Communities and Chronic Disease Self-Management. Health Communication 2017;32(3):269 View
  11. Rizzo R, Van den Bree M, Challenger A, Cuthbert A, Ayllon M, Clarke A, Thompson R. Co-creating a knowledge base in the “22q11.2 deletion syndrome” community. Journal of Community Genetics 2020;11(1):101 View
  12. Yardi S, Caldwell P, Barnes E, Scott K. Determining parents' patterns of behaviour when searching for online information on their child's health. Journal of Paediatrics and Child Health 2018;54(11):1246 View
  13. Graziani E, Petrini F. Online Communities. Benefits and Risks. International Journal of User-Driven Healthcare 2018;8(2):1 View
  14. Miyagawa S, Oguma Y, Ohgi Y. Evaluation of a Community-based Health Promotion Program with Online Off-line Combination: The Effect of an Online Diet Record System on Self-rated Achievement. Procedia Computer Science 2016;100:768 View
  15. Chang I, Chen R. The Impact of Perceived Usefulness on Satisfaction with Online Parenting Resources: The Mediating Effects of Liking and Online Interaction. The Asia-Pacific Education Researcher 2020;29(4):307 View
  16. Siegmund L. “Like Us on Facebook®”: Nursing in a World of Social Media. Journal of Radiology Nursing 2019;38(3):183 View
  17. Morgan T, Schmidt J, Haakonsen C, Lewis J, Della Rocca M, Morrison S, Biesecker B, Kaphingst K. Using the Internet to Seek Information About Genetic and Rare Diseases: A Case Study Comparing Data From 2006 and 2011. JMIR Research Protocols 2014;3(1):e10 View
  18. Marokakis S, Kasparian N, Kennedy S. Parents’ perceptions of counselling following prenatal diagnosis of congenital anomalies of the kidney and urinary tract: a qualitative study. BJU International 2017;119(3):474 View
  19. Oyebode O. Commentary on trending now: future directions in digital media for the public health sector. Journal of Public Health 2014;36(4):537 View
  20. Bellon-Harn M, Manchaiah V, Kunda K. Readability, Quality, and Suitability of English-Language Internet Information about Children with Primary Speech and Language Disorders. Journal of Consumer Health on the Internet 2020;24(3):228 View
  21. Niela-Vilén H, Axelin A, Salanterä S, Melender H. Internet-based peer support for parents: A systematic integrative review. International Journal of Nursing Studies 2014;51(11):1524 View
  22. Wang T, Lund B. Categories of Information Need Expressed by Parents of Individuals with Rare Genetic Disorders in a Facebook Community Group: A Case Study with Implications for Information Professionals. Journal of Consumer Health on the Internet 2020;24(1):20 View
  23. Kwon B, Kim S, Lee S, Choo J, Huh J, Yi J. VisOHC: Designing Visual Analytics for Online Health Communities. IEEE Transactions on Visualization and Computer Graphics 2016;22(1):71 View
  24. Nicholl H, Tracey C, Begley T, King C, Lynch A. Internet Use by Parents of Children With Rare Conditions: Findings From a Study on Parents’ Web Information Needs. Journal of Medical Internet Research 2017;19(2):e51 View
  25. Quinn S, Bond R, Nugent C. Quantifying health literacy and eHealth literacy using existing instruments and browser-based software for tracking online health information seeking behavior. Computers in Human Behavior 2017;69:256 View
  26. Young C. Community Management That Works: How to Build and Sustain a Thriving Online Health Community. Journal of Medical Internet Research 2013;15(6):e119 View
  27. Lee H. Research trends in mothers' health information seeking behaviors: A review of the literature. Proceedings of the Association for Information Science and Technology 2016;53(1):1 View
  28. Strekalova Y. Finding Motivation. Qualitative Health Research 2016;26(9):1180 View
  29. Chen J. Beyond black and white: heibaika, neuroparenting, and lay neuroscience. BioSocieties 2021;16(1):70 View
  30. Ranade A, Belthur M, Oka G, Malone J. YouTube as an information source for clubfoot: a quality analysis of video content. Journal of Pediatric Orthopaedics B 2020;29(4):375 View
  31. Titgemeyer S, Schaaf C. Facebook Support Groups for Rare Pediatric Diseases: Quantitative Analysis. JMIR Pediatrics and Parenting 2020;3(2):e21694 View
  32. FORTE O, NOGUEIRA M. PONSETI METHOD IN BRAZIL: FIRST TEN YEARS OF A CLUBFOOT WEBSITE - USERS PROFILE. Acta Ortopédica Brasileira 2020;28(6):269 View
  33. Walsh J, Cave J, Griffiths F. Spontaneously Generated Online Patient Experience of Modafinil: A Qualitative and NLP Analysis. Frontiers in Digital Health 2021;3 View
  34. Buteau-Poulin A, Gosselin C, Bergeron-Ouellet A, Kiss J, Lamontagne M, Maltais D, Trottier C, Desmarais C. Availability and Quality of Web Resources for Parents of Children With Disability: Content Analysis and Usability Study. JMIR Pediatrics and Parenting 2020;3(2):e19669 View
  35. Park E, Kim H, Steinhoff A. Health-Related Internet Use by Informal Caregivers of Children and Adolescents: An Integrative Literature Review. Journal of Medical Internet Research 2016;18(3):e57 View
  36. Boyce L, Harun A, Prybutok G, Prybutok V. Exploring the factors in information seeking behavior: a perspective from multinational COPD online forums. Health Promotion International 2021 View

Books/Policy Documents

  1. . Looking for Information: A Survey of Research on Information Seeking, Needs, and Behavior. View
  2. . Looking for Information: A Survey of Research on Information Seeking, Needs, and Behavior. View
  3. . Looking for Information: A Survey of Research on Information Seeking, Needs, and Behavior. View
  4. . Looking for Information: A Survey of Research on Information Seeking, Needs, and Behavior. View
  5. . Looking for Information: A Survey of Research on Information Seeking, Needs, and Behavior. View
  6. . Looking for Information: A Survey of Research on Information Seeking, Needs, and Behavior. View
  7. . Looking for Information: A Survey of Research on Information Seeking, Needs, and Behavior. View
  8. . Looking for Information: A Survey of Research on Information Seeking, Needs, and Behavior. View
  9. . Looking for Information: A Survey of Research on Information Seeking, Needs, and Behavior. View
  10. . Looking for Information: A Survey of Research on Information Seeking, Needs, and Behavior. View
  11. Capello F, Pili G. Telemedicine for Children's Health. View
  12. . Looking for Information: A Survey of Research on Information Seeking, Needs, and Behavior. View
  13. . Looking for Information: A Survey of Research on Information Seeking, Needs, and Behavior. View
  14. . Looking for Information: A Survey of Research on Information Seeking, Needs, and Behavior. View