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

Demographics of Users, Social & Digital Divide (739) Information Seeking, Information Needs (465)

Published on in Vol 19, No 2 (2017): February

Internet Use by Parents of Children With Rare Conditions: Findings From a Study on Parents’ Web Information Needs

Internet Use by Parents of Children With Rare Conditions: Findings From a Study on Parents’ Web Information Needs

Internet Use by Parents of Children With Rare Conditions: Findings From a Study on Parents’ Web Information Needs

Authors of this article:

Honor Nicholl1 Author Orcid Image ;   Catherine Tracey1 Author Orcid Image ;   Thelma Begley1 Author Orcid Image ;   Carole King1 Author Orcid Image ;   Aileen M Lynch1 Author Orcid Image
Article Authors Cited by (83) Tweetations (72) Metrics

Journals

  1. Adams D, Roche L, Heussler H. Parent perceptions, beliefs, and fears around genetic treatments and cures for children with Angelman syndrome. American Journal of Medical Genetics Part A 2020;182(7):1716 View
  2. Charbonniez P, Tager A, Kwei L, Gustafson M. The social media diagnosis of Superior Vena Cava Syndrome: A case report. The American Journal of Emergency Medicine 2019;37(2):370 View
  3. Lima V, Mazza V, Scochi C, Gonçalves L. Online information use on health/illness by relatives of hospitalized premature infants. Revista Brasileira de Enfermagem 2019;72(suppl 3):79 View
  4. Reeder J, Morris J. Becoming an empowered parent. How do parents successfully take up their role as a collaborative partner in their child’s specialist care?. Journal of Child Health Care 2021;25(1):110 View
  5. Bryan M, Evans Y, Morishita C, Midamba N, Moreno M. Parental Perceptions of the Internet and Social Media as a Source of Pediatric Health Information. Academic Pediatrics 2020;20(1):31 View
  6. Zerpe A, Nowinski D, Ramklint M, Öster C. Parents’ Experiences of Their Child's Craniosynostosis and the Initial Care Process. Journal of Craniofacial Surgery 2020;31(1):251 View
  7. Barton K, Wingerson A, Barzilay J, Tabor H. “Before Facebook and before social media…we did not know anybody else that had this”: parent perspectives on internet and social media use during the pediatric clinical genetic testing process. Journal of Community Genetics 2019;10(3):375 View
  8. Lagler F, Moder A, Rohrbach M, Hennermann J, Mengel E, Gökce S, Hundsberger T, Rösler K, Karabul N, Huemer M. Extent, impact, and predictors of diagnostic delay in Pompe disease: A combined survey approach to unveil the diagnostic odyssey. JIMD Reports 2019;49(1):89 View
  9. Dee E, Varady N, Katz J, Buchmiller T. Disparity in online health information in pediatric vs. adult surgical conditions. Pediatric Surgery International 2019;35(7):813 View
  10. 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
  11. Bleyer A, Kidd K, Robins V, Martin L, Taylor A, Santi A, Tsoumas G, Hunt A, Swain E, Abbas M, Akinbola E, Vidya S, Moossavi S, Bleyer A, Živná M, Hartmannová H, Hodaňová K, Vyleťal P, Votruba M, Harden M, Blumenstiel B, Greka A, Kmoch S. Outcomes of patient self-referral for the diagnosis of several rare inherited kidney diseases. Genetics in Medicine 2020;22(1):142 View
  12. Sinclair M, McCullough J, Elliott D, Latos-Bielenska 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. Journal of Medical Internet Research 2019;21(11):e15847 View
  13. Benetoli A, Chen T, Aslani P. How patients’ use of social media impacts their interactions with healthcare professionals. Patient Education and Counseling 2018;101(3):439 View
  14. Ruble K, Paré-Blagoev E, Cooper S, Jacobson L. Assessment of Online Resources for Returning to School During and After Treatment of Childhood Cancer. Journal of Cancer Education 2020;35(5):876 View
  15. Kubb C, Foran H. Online Health Information Seeking by Parents for Their Children: Systematic Review and Agenda for Further Research. Journal of Medical Internet Research 2020;22(8):e19985 View
  16. Shervington L, Wimalasundera N, Delany C. Paediatric clinicians' experiences of parental online health information seeking: A qualitative study. Journal of Paediatrics and Child Health 2020;56(5):710 View
  17. Iyer A, Barzilay J, Tabor H. Patient and family social media use surrounding a novel treatment for a rare genetic disease: a qualitative interview study. Genetics in Medicine 2020;22(11):1830 View
  18. Rocha H, Savatt J, Riggs E, Wagner J, Faucett W, Martin C. Incorporating Social Media into your Support Tool Box: Points to Consider from Genetics‐Based Communities. Journal of Genetic Counseling 2018;27(2):470 View
  19. McGlynn J, Langfelder-Schwind E. Bridging the Gap between Scientific Advancement and Real-World Application: Pediatric Genetic Counseling for Common Syndromes and Single-Gene Disorders. Cold Spring Harbor Perspectives in Medicine 2020;10(10):a036640 View
  20. Mogul D, Bowring M, Lau J, Babin E, Bridges J, Harpavat S, Miloh T. Role for Social Media in Pediatric Liver Disease: Caregiver and Provider Perspectives. Pediatric Gastroenterology, Hepatology & Nutrition 2020;23(6):548 View
  21. Rovira‐Moreno E, Abuli A, Codina‐Sola M, Valenzuela I, Serra‐Juhe C, Cuscó I, Borregán M, Cueto‐González A, Vendrell T, López‐Grondona F, Brun‐Gasca C, Brignani E, Martínez‐Ribot L, Garci‐Espejo R, Cruz J, García‐Arumí E, Tizzano E. Beyond the disease itself: A cross‐cutting educational initiative for patients and families with rare diseases. Journal of Genetic Counseling 2021;30(3):693 View
  22. Knöchelmann A, Geyer S. Maternal knowledge of the child’s heart defect over a 1-year time span, its development and associated factors. Cardiology in the Young 2021;31(12):1943 View
  23. Sharma A, Mann Z, Cherian R, Del Rosario J, Yang J, Sarkar U. Recommendations From the Twitter Hashtag #DoctorsAreDickheads: Qualitative Analysis. Journal of Medical Internet Research 2020;22(10):e17595 View
  24. 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
  25. Mangan M, Cakir A, Yurttaser Ocak S, Tekcan H, Balci S, Ozcelik Kose A. Analysis of the quality, reliability, and popularity of information on strabismus on YouTube. Strabismus 2020;28(4):175 View
  26. Wollmann K, der Keylen P, Tomandl J, Meerpohl J, Sofroniou M, Maun A, Voigt-Radloff S. The information needs of internet users and their requirements for online health information—A scoping review of qualitative and quantitative studies. Patient Education and Counseling 2021;104(8):1904 View
  27. Childerhose J, Rich C, East K, Kelley W, Simmons S, Finnila C, Bowling K, Amaral M, Hiatt S, Thompson M, Gray D, Lawlor J, Myers R, Barsh G, Lose E, Bebin M, Cooper G, Brothers K. The Therapeutic Odyssey: Positioning Genomic Sequencing in the Search for a Child’s Best Possible Life. AJOB Empirical Bioethics 2021;12(3):179 View
  28. Miller B, Goldenberg A, Bonhomme N. Digital peer‐to‐peer information seeking and sharing: Opportunities for education and collaboration in newborn screening. American Journal of Medical Genetics Part C: Seminars in Medical Genetics 2021;187(1):64 View
  29. Caruso Brown A. Social Media in the Pediatric Hematology/Oncology Clinical Space. Journal of Pediatric Hematology/Oncology 2021;43(1):e37 View
  30. Hughes T, Meredith F, Monteregge S, Bennett S, Shafran R. Medically unexplained symptoms in children: an experimental investigation of the impact of internet searching on parental responses. Behavioural and Cognitive Psychotherapy 2021;49(1):91 View
  31. Dodds R. Meeting families where they are: Text‐based support in parent to parent programs. Child: Care, Health and Development 2021;47(2):290 View
  32. Titgemeyer S, Schaaf C. Facebook Support Groups for Rare Pediatric Diseases: Quantitative Analysis. JMIR Pediatrics and Parenting 2020;3(2):e21694 View
  33. Dwyer A, Zeng Z, Lee C. Validating online approaches for rare disease research using latent class mixture modeling. Orphanet Journal of Rare Diseases 2021;16(1) View
  34. LeBlanc K, Glanton E, Nagy A, Bater J, Berro T, McGuinness M, Studwell C, Might M. Rare disease patient matchmaking: development and outcomes of an internet case-finding strategy in the Undiagnosed Diseases Network. Orphanet Journal of Rare Diseases 2021;16(1) View
  35. Kilcoyne S, Rogers C, Thomas G, Wall S, Johnson D. Craniofacial Surgery-Related Hashtag Utilisation on Instagram. Journal of Craniofacial Surgery 2021;32(6):2035 View
  36. Long J, Best S, Nic Giolla Easpaig B, Hatem S, Fehlberg Z, Christodoulou J, Braithwaite J. Needs of people with rare diseases that can be supported by electronic resources: a scoping review. BMJ Open 2022;12(9):e060394 View
  37. Titgemeyer S, Schaaf C. Facebook Support Groups for Pediatric Rare Diseases: Cross-Sectional Study to Investigate Opportunities, Limitations, and Privacy Concerns. JMIR Pediatrics and Parenting 2022;5(1):e31411 View
  38. Francisco R, Brasil S, Pascoal C, Jaeken J, Liddle M, Videira P, dos Reis Ferreira V. The road to successful people-centric research in rare diseases: the web-based case study of the Immunology and Congenital Disorders of Glycosylation questionnaire (ImmunoCDGQ). Orphanet Journal of Rare Diseases 2022;17(1) View
  39. Songur M, Citirik M. Evaluation of the Usefulness of YouTube Videos on Retinal Detachment Surgery. Cureus 2021 View
  40. Álvaro-Sánchez S, Abreu-Rodríguez I, Abulí A, Serra-Juhe C, Garrido-Navas M. Current Status of Genetic Counselling for Rare Diseases in Spain. Diagnostics 2021;11(12):2320 View
  41. Brown K, Benjaminy S, Illes J, Deyell R. Parent Perspectives on Information-seeking, Trustworthiness, and Decision-making in High-risk Neuroblastoma. Journal of Pediatric Hematology/Oncology 2021;43(8):e1099 View
  42. Maxfield M, Cooper M, Kavanagh A, Devine A, Gill Atkinson L. On the outside looking in: a phenomenological study of the lived experience of Australian adults with a disorder of the corpus callosum. Orphanet Journal of Rare Diseases 2021;16(1) View
  43. Adams S, Tucker R, Lechner B. The new normal: parental use of online health communities in the NICU. Pediatric Research 2022;91(7):1827 View
  44. Höhn S, Dozières-Puyravel B, Auvin S. Expectations of patient associations from a French Center for Rare Epilepsies. Epilepsy & Behavior 2022;136:108927 View
  45. Gruebner O, van Haasteren A, Hug A, Elayan S, Sykora M, Albanese E, Naslund J, Wolf M, Fadda M, von Rhein M. Digital Platform Uses for Help and Support Seeking of Parents With Children Affected by Disabilities: Scoping Review. Journal of Medical Internet Research 2022;24(12):e37972 View
  46. Frey E, Bonfiglioli C, Brunner M, Frawley J. Parents’ Use of Social Media as a Health Information Source for Their Children: A Scoping Review. Academic Pediatrics 2022;22(4):526 View
  47. Hansen J, Ramachandran R, Vockley J. Survey of Health Care Provider Understanding of Gene Therapy Research for Inherited Metabolic Disorders. Clinical Therapeutics 2022;44(8):1045 View
  48. Nievas-Soriano B, García-Duarte S, Fernández-Alonso A, Bonillo-Perales A, Parrón-Carreño T. Users evaluation of a Spanish eHealth pediatric website. Computer Methods and Programs in Biomedicine 2021;212:106462 View
  49. Savran F, Elibol E. Evaluating YouTube as a Source of Patient Information for Blefaroplasty. Facial Plastic Surgery 2023;39(01):086 View
  50. Rihm L, Dreier M, Rezvani F, Wiegand-Grefe S, Dirmaier J. The psychosocial situation of families caring for children with rare diseases during the COVID-19 pandemic: results of a cross-sectional online survey. Orphanet Journal of Rare Diseases 2022;17(1) View
  51. Whalen E, Hellsten M, Santucci G, Czyzewski D, Varghese N. Social Media Participation Among Parents and Caregivers of Children With Pulmonary Hypertension. Advances in Pulmonary Hypertension 2022;21(1):16 View
  52. Karns C, Todis B, Glenn E, Glang A, Wade S, Riddle I, McIntyre L. Seeking Out Social Learning: Online Self-Education in Parents of Children With Intellectual and Developmental Disabilities. Intellectual and Developmental Disabilities 2022;60(4):303 View
  53. Nageswaran S, Gower W, King N, Golden S. Tracheostomy decision-making for children with medical complexity: What supports and resources do caregivers need?. Palliative and Supportive Care 2024;22(4):776 View
  54. Dwyer A, Uveges M, Dockray S, Smith N. Advancing qualitative rare disease research methodology: a comparison of virtual and in-person focus group formats. Orphanet Journal of Rare Diseases 2022;17(1) View
  55. Man A, van Ballegooie C. Assessment of the Readability of Web-Based Patient Education Material From Major Canadian Pediatric Associations: Cross-sectional Study. JMIR Pediatrics and Parenting 2022;5(1):e31820 View
  56. Nievas-Soriano B, Castro-Luna G, García-Duarte S, González-López M, Parrón-Carreño T. Profile of the Users and the Most Visited Topics of a Pediatric eHealth Website. International Journal of Environmental Research and Public Health 2021;18(21):11248 View
  57. Yabumoto M, Miller E, Rao A, Tabor H, Ormond K, Halley M. Perspectives of Rare Disease Social Media Group Participants on Engaging With Genetic Counselors: Mixed Methods Study. Journal of Medical Internet Research 2022;24(12):e42084 View
  58. Basu S, Preisz A. Family conflict and aggression in the paediatric intensive care unit: Responding to challenges in practice. Clinical Ethics 2023;18(4):410 View
  59. Wang T, Lund B, Dow M. Improving Health Information for Rare Disease Patients and Caregivers: A Survey of Preferences for Health Information Seeking Channels and Formats. Journal of Hospital Librarianship 2023;23(2):83 View
  60. Yudianto B, Caldwell P, Nanan R, Barnes E, Scott K. Patterns of parental online health information‐seeking behaviour. Journal of Paediatrics and Child Health 2023;59(5):743 View
  61. Wang Y, Cao J, Zhang W, Chen H, Li M, Liu Z, Wang J. What is needed by parents of constipated infants and toddlers: A cross-sectional study in China. Frontiers in Pediatrics 2023;11 View
  62. Liévin V, Hansen J, Lund A, Elstein D, Matthiesen M, Elomaa K, Zarakowska K, Himmelhan I, Botha J, Borgeskov H, Winther O. FindZebra Online Search Delving into Rare Disease Case Reports Using Natural Language Processing. SSRN Electronic Journal 2022 View
  63. Son H, Han G. Development and evaluation of a tailored mHealth parenting program for multicultural families: a three-arm cluster randomized controlled trial. Frontiers in Public Health 2023;11 View
  64. Rim D, Shin H, Jeon H. Accessibility of social services and ICT‐based services for children with disabilities and their families. Child & Family Social Work 2024;29(1):112 View
  65. Liévin V, Hansen J, Lund A, Elstein D, Matthiesen M, Elomaa K, Zarakowska K, Himmelhan I, Botha J, Borgeskov H, Winther O, Harrison E. FindZebra online search delving into rare disease case reports using natural language processing. PLOS Digital Health 2023;2(6):e0000269 View
  66. EYÜBOĞLU E. Ebeveynler ve Online Sağlık Bilgisi Arama Davranışı: Sağlık Okuryazarlığı Kapsamında Bir İnceleme. TRT Akademi 2023;08(19):904 View
  67. Samur Erguven S, Topsakal K, Aksoy M. YouTube™ as a source of parents' information for craniosynostosis. Orthodontics & Craniofacial Research 2024;27(S1):141 View
  68. Kilcoyne S, Overton S, Brockbank S, Lloyd-White S, Samuel R, Hotton M, Cropper J, Thomas G, Ching C, Johnson D. Social Media and Website Use: The Experiences of Parents and Carers Accessing Care at the Oxford Craniofacial Unit. Journal of Craniofacial Surgery 2023 View
  69. Wu C, Chu X, Tang K, Cheng D, Ren L. Caregiving experiences of caregivers of children with rare diseases: A qualitative meta-synthesis. Journal of Pediatric Nursing 2024;75:31 View
  70. Brothers K, Cooper G, McNamara K, Lemke A, Timmons J, Rich C, Cadigan R, Ponsaran R, Goldenberg A. Moving to the Middle Ground: Redefining Genomic Utility to Expand Understanding of Familial Benefit. Ethics & Human Research 2024;46(1):43 View
  71. Weddell J, Jawad D, Buckley T, Redfern J, Mansur Z, Elliott N, Hanson C, Gallagher R. Online information for spontaneous coronary artery dissection (SCAD) survivors and their families: A systematic appraisal of content and quality of websites. International Journal of Medical Informatics 2024;184:105372 View
  72. Haffar A, Hirsch A, Morrill C, Garcia A, Werner Z, Gearhart J, Crigger C. Clear as Mud: Readability Scores in Cloacal Exstrophy Literature and Its Treatment. Research and Reports in Urology 2024;Volume 16:39 View
  73. Browne R, Hurley C, Carr S, de Blacam C. Online Resources for Robin Sequence; an Analysis of Readability. The Cleft Palate Craniofacial Journal 2024 View
  74. Chang A, Huang S, Benjamin D, Schmidt J, Palmer C, Garrison N. Exploring the role of digital tools in rare disease management: An interview‐based study. Journal of Genetic Counseling 2024 View
  75. Kunze M, Wei Q, Bacon-Yates A, Pompan E, Lockwood H, Witthuhn N. Promoting Reciprocal Relationships with Flexibility, Coaching, and Teaching (PRRFCT Match): A Virtual Parent-Mediated Intervention Package for Young Children with Developmental Disabilities. Journal of Autism and Developmental Disorders 2024 View
  76. Yılmaz İ, Mercanlı M, Doğan L. Pitfalls of social media for aesthetic eye surgery patients: assessing YouTube’s aesthetic canthoplasty content. International Ophthalmology 2024;44(1) View
  77. Strand T, Westergren T. A meta-Ethnography on Parents’ Experiences of the Internet As a Source of Health Information. Global Qualitative Nursing Research 2024;11 View
  78. Ahmed H, Thrishulamurthy C. Evaluating ChatGPT's efficacy and readability to common pediatric ophthalmology and strabismus-related questions. European Journal of Ophthalmology 2024 View
  79. Ayodele O, Fertek D, Evuarherhe O, Siffel C, Audi J, Yee K, Burton B. A Systematic Literature Review on the Global Status of Newborn Screening for Mucopolysaccharidosis II. International Journal of Neonatal Screening 2024;10(4):71 View
  80. Paliwoda E, Torres A, Dema E, Gajjar A, Horne M, Trandafirescu M, Adamo M, Schalet B, Bray S. Confronting Craniosynostosis: Maternal Concerns, Challenges, and Coping for their Children. The Cleft Palate Craniofacial Journal 2024 View
  81. Bateman-House A, Cowley K, Fernandez V, Gilmor M, Hunt C, Nevoret M, Ward E, Shah L, Smith J. Lived Experience of Patients & Caregivers in Rare Genetic Neurological Gene Therapy Clinical Trials in Children. Pediatric Neurology 2024 View