Published on in Vol 18, No 12 (2016): December

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

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

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

Journals

  1. Castro A, Chougui K, Bilodeau C, Tsimicalis A. Exploring the Views of Osteogenesis Imperfecta Caregivers on Internet-Based Technologies: Qualitative Descriptive Study. Journal of Medical Internet Research 2019;21(12):e15924 View
  2. Tikkanen S, Peterson B, Parsloe S. Courtesy Stigma and Social Support: An Exploration of Fathers’ Buffering Strategies and Blocking Rationalizations. Health Communication 2019;34(13):1543 View
  3. Pionke J, Manson J. Creating Disability LibGuides with Accessibility in Mind. Journal of Web Librarianship 2018;12(1):63 View
  4. Donley T, King D, Nyathi N, Okafor A, Mbizo J. Socioeconomic Status, Family Functioning and Delayed Care Among Children With Special Needs. Social Work in Public Health 2018;33(6):366 View
  5. Castro A, Marinello J, Chougui K, Morand M, Bilodeau C, Tsimicalis A. The day‐to‐day experiences of caring for children with Osteogenesis Imperfecta: A qualitative descriptive study. Journal of Clinical Nursing 2020;29(15-16):2999 View
  6. Canty M, Breitbart S, Siegel L, Fehlings D, Milo-Manson G, Alotaibi N, Ibrahim G. The role of social media in selective dorsal rhizotomy for children: information sharing and social support. Child's Nervous System 2019;35(11):2179 View
  7. Boss R, Raisanen J, Detwiler K, Fratantoni K, Huff S, Neubauer K, Donohue P. Lived Experience of Pediatric Home Health Care Among Families of Children With Medical Complexity. Clinical Pediatrics 2020;59(2):178 View
  8. Dol J, Richardson B, Boates T, Campbell-Yeo M. Learning to parent from Google? Evaluation of available online health evidence for parents of preterm infants requiring neonatal intensive care. Health Informatics Journal 2019;25(4):1265 View
  9. Ashcraft L, Asato M, Houtrow A, Kavalieratos D, Miller E, Ray K. Parent Empowerment in Pediatric Healthcare Settings: A Systematic Review of Observational Studies. The Patient - Patient-Centered Outcomes Research 2019;12(2):199 View
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  11. 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
  12. Skliarova T, Zaitsev D. Developing Practices of Inclusive Culture Social Services: Interdisciplinary Analysis Challenges and Perspectives. Bulletin of Science and Practice 2019;5(11):343 View
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  14. Petrenko C, Parr J, Kautz C, Tapparello C, Olson H. A Mobile Health Intervention for Fetal Alcohol Spectrum Disorders (Families Moving Forward Connect): Development and Qualitative Evaluation of Design and Functionalities. JMIR mHealth and uHealth 2020;8(4):e14721 View
  15. Jansen R, Reid M. Communication Technology Use by Caregivers of Adolescents With Mental Health Issues: Systematic Review. JMIR mHealth and uHealth 2020;8(8):e13179 View
  16. Motti V, Kalantari N, Neris V. Understanding how social media imagery empowers caregivers: an analysis of microcephaly in Latin America. Personal and Ubiquitous Computing 2021;25(2):321 View
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  19. Kent de Grey R, Uchino B, Baucom B, Smith T, Holton A, Diener E. Enemies and friends in high-tech places: the development and validation of the Online Social Experiences Measure. DIGITAL HEALTH 2019;5:205520761987835 View
  20. Grace R, Kemp L, Barnes J, Elcombe E, Knight J, Baird K, Webster V, Byrne F. Community Volunteer Support for Families With Young Children: Protocol for the Volunteer Family Connect Randomized Controlled Trial. JMIR Research Protocols 2018;7(7):e10000 View
  21. Huang K, Lee D, Nakigudde J, Cheng S, Gouley K, Mann D, Schoenthaler A, Chokshi S, Kisakye E, Tusiime C, Mendelsohn A. Use of Technology to Promote Child Behavioral Health in the Context of Pediatric Care: A Scoping Review and Applications to Low- and Middle-Income Countries. Frontiers in Psychiatry 2019;10 View
  22. Jansen R, Reid M. Interest in Communication Technology by Rural Caregivers of Adolescents with Mental Health Issues in South Africa: The Mmogo-Method®. Issues in Mental Health Nursing 2021;42(1):24 View
  23. Jindal P, MacDermid J, Rosenbaum P, DiRezze B, Narayan A. Perspectives on rehabilitation of children with cerebral palsy: exploring a cross-cultural view of parents from India and Canada using the international classification of functioning, disability and health. Disability and Rehabilitation 2018;40(23):2745 View
  24. Fry J, Frader J. “We want to do everything”: how parents represent their experiences with maternal–fetal surgery online. Journal of Perinatology 2018;38(3):226 View
  25. Springer A. Optimal Management of Undescended Testis in Boys with Cerebral Palsy. A Debate. Sexual Development 2019;13(1):20 View
  26. 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
  27. Uhm J, Kim M. Predicting Quality of Life among Mothers in an Online Health Community for Children with Type 1 Diabetes. Children 2020;7(11):235 View
  28. 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
  29. Jeffrey A, Andracchio L, Dvorak M, Lomas P, Smith B, Borowitz D. Virtual Peer Support for People With Cystic Fibrosis and Their Family Members: A Program Evaluation. Journal of Patient Experience 2020;7(6):1748 View
  30. Fernández-Medina I, Granero-Molina J, Hernández-Padilla J, Jiménez-Lasserrotte M, Ruiz-Fernández M, Fernández-Sola C. Socio-family support for parents of technology-dependent extremely preterm infants after hospital discharge. Journal of Child Health Care 2022;26(1):42 View
  31. Hanna G, Batko B, Potter J, Ippolito J, Edobor-Osula F. The role of social media in clubfoot: Information sharing and social support. Journal of Children's Orthopaedics 2021;15(1):81 View
  32. Iotova V, Schalin-Jäntti C, Bruegmann P, Broesamle M, De Graaf J, Bratina N, Tillmann V, Pereira A, Hiort O. Access to patient oriented information—a baseline Endo-ERN survey among patients with rare endocrine disorders. Endocrine 2021;71(3):542 View
  33. Schindler M, Domahidi E. The growing field of interdisciplinary research on user comments: A computational scoping review. New Media & Society 2021;23(8):2474 View
  34. Deuitch N, Beckman E, Halley M, Young J, Reuter C, Kohler J, Bernstein J, Wheeler M, Ormond K, Tabor H. “Doctors can read about it, they can know about it, but they've never lived with it”: How parents use social media throughout the diagnostic odyssey. Journal of Genetic Counseling 2021;30(6):1707 View
  35. Schimith M, Cezar-Vaz M, Xavier D, Cardoso L. Communication in health and inter-professional collaboration in the care for children with chronic conditions. Revista Latino-Americana de Enfermagem 2021;29 View
  36. Cao P, McGrath C, Rudman D. Navigating the “Blind World”: The psychosocial and occupational experiences of parents of adolescents with visual impairments. British Journal of Visual Impairment 2023:026461962311544 View
  37. Mbuthia K, Mwangi S, Owino G. Implications of providing social support to close network members on the social well-being of older people in Kitui County, Kenya. Frontiers in Aging 2022;3 View
  38. 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
  39. Xi Y, Elkana O, Jiao W, Li D, Tao Z. Associations between social support and anxiety during the COVID-19 lockdown in young and middle-aged Israelis: A cross-sectional study. World Journal of Psychiatry 2022;12(9):1194 View
  40. Kaji N, Ando S, Nishida A, Yamasaki S, Kuwabara H, Kanehara A, Satomura Y, Jinde S, Kano Y, Hiraiwa‐Hasegawa M, Igarashi T, Kasai K. Children with special health care needs and mothers' anxiety/depression: Findings from the Tokyo Teen Cohort study. Psychiatry and Clinical Neurosciences 2021;75(12):394 View
  41. Schimith M, Cezar-Vaz M, Xavier D, Cardoso L. Communication in health and inter-professional collaboration in the care for children with chronic conditions. Revista Latino-Americana de Enfermagem 2021;29 View
  42. Harney S, Chu T, Trask C, Welch J. Health-related Internet Use by Caregivers of Children and Adolescents With Cancer. Journal of Pediatric Hematology/Oncology 2023;45(2):e214 View
  43. Elliott K, Vears D, Sung V, Poulakis Z, Sheehan J. Exploring Parent Support Needs during the Newborn Hearing Diagnosis Pathway. Journal of Clinical Medicine 2022;11(5):1389 View
  44. Forner-Puntonet M, Gisbert-Gustemps L, Castell-Panisello E, Larrarte M, Quintero J, Ariceta G, Gran F, Iglesias-Serrano I, Garcia-Morán A, Español-Martín G, Ibañez-Jimenez P, Ramos-Quiroga J. Stress and coping strategies of families of pediatric solid organ transplant recipients in times of pandemic. Frontiers in Psychology 2023;14 View
  45. Bonnot Fazio S, Dany L, Dahan S, Tosello B. Communication, information, and the parent–caregiver relationship in neonatal intensive care units: A review of the literature. Archives de Pédiatrie 2022;29(5):331 View
  46. Callans K, Carroll D, McDonough A. Parental experience of hypoglossal nerve stimulator implantation in adolescents with Down Syndrome and obstructive sleep apnea. Journal of Pediatric Nursing 2023;68:24 View
  47. Costa R, Lamy Z, Oliveira P, Carvalho R, Pereira M, Guimarães C, Batista R, Nascimento M. Síndrome congênita pelo vírus zika: análise das redes de apoio de pais. Acta Paulista de Enfermagem 2022;35 View
  48. Kelly K, Doucet S, Luke A, Azar R, Montelpare W. Experiences, Motivations, and Perceived Impact of Participation in a Facebook-Based Support Group for Caregivers of Children and Youth With Complex Care Needs: Qualitative Descriptive Study. JMIR Pediatrics and Parenting 2022;5(3):e33172 View
  49. Taylor K, Havinga J, Moore B, Tumin D, Bear K. Social Media as a Source of Medical Information for Parents of Premature Infants: A Content Analysis of Prematurity-Related Facebook Groups. American Journal of Perinatology 2023;40(15):1629 View
  50. Kwon S, O’Neill M, Foster C. The Associations of Child’s Clinical Conditions and Behavioral Problems with Parenting Stress among Families of Preschool-Aged Children: 2018–2019 National Survey of Child Health. Children 2022;9(2):241 View
  51. Hoover C, Coller R, Houtrow A, Harris D, Agrawal R, Turchi R. Understanding Caregiving and Caregivers: Supporting Children and Youth With Special Health Care Needs at Home. Academic Pediatrics 2022;22(2):S14 View
  52. Lynch A, Raziano V, Feehan K, Thompson E, Massey P, Turchi R. Unmet Needs of Male Caregivers of Children and Youth with Special Health Care Needs. Maternal and Child Health Journal 2021;25(12):1992 View
  53. Gulzar S, Saeed S, Taufiq Kirmani S, Karmaliani R, Majumder M. Enhancing the knowledge of parents on child health using eLearning in a government school in the semi-rural community of Karachi, Pakistan. PLOS Global Public Health 2022;2(6):e0000500 View
  54. Houwen T, Vugts M, Lansink K, Theeuwes H, Neequaye N, Beerekamp M, Joosen M, de Jongh M. Developing mHealth to the Context and Valuation of Injured Patients and Professionals in Hospital Trauma Care: Qualitative and Quantitative Formative Evaluations. JMIR Human Factors 2022;9(2):e35342 View
  55. Kelly K, Doucet S, Luke A, Azar R, Montelpare W. Exploring the Use of a Facebook-Based Support Group for Caregivers of Children and Youth With Complex Care Needs: Qualitative Descriptive Study. JMIR Pediatrics and Parenting 2022;5(2):e33170 View
  56. Pérez-Ardanaz B, Peláez-Cantero M, González-Cano-Caballero M, Gutiérrez-Rodríguez L, Gómez-González A, Lupiáñez-Pérez I, Morales-Asencio J, Canca-Sánchez J. Utilization of Parallel Resources and Sociodemographic Factors in Treating Children with Complex Chronic Diseases: A Cross-Sectional Study. Children 2021;8(11):973 View
  57. Olpin E, Hanson C, Crandall A. Influence of Social Media Uses and Gratifications on Family Health among U.S. Parents: A Cross-Sectional Study. International Journal of Environmental Research and Public Health 2023;20(3):1910 View
  58. Ikhwan R. Women in health: Social practices in online health information management. Masyarakat, Kebudayaan dan Politik 2020;33(4):371 View
  59. Para A, Batko B, Ippolito J, Hanna G, Edobor-Osula F. Developmental Dysplasia of the Hip: How Does Social Media Influence Patients and Caregivers Seeking Information?. Children 2021;8(10):869 View
  60. Currie G, Finlay B, Seth A, Roth C, Elsabbagh M, Hudon A, Hunt M, Jodoin S, Lach L, Lencucha R, Nicholas D, Shakako K, Zwicker J. Mental health challenges during COVID-19: perspectives from parents with children with neurodevelopmental disabilities. International Journal of Qualitative Studies on Health and Well-being 2022;17(1) View
  61. Dorner R, Lemmon M, Vazifedan T, Johnson E, Boss R. Symptoms of Cerebrospinal Shunt Malfunction in Young Children: A National Caregiver Survey. Child Neurology Open 2023;10:2329048X2311535 View
  62. Craig K, Riggan K, Rubeck S, Meredith S, Allyse M, Michie M. Never “totally prepared”: Support groups on helping families prepare for a child with a genetic condition. Journal of Community Genetics 2023;14(3):319 View
  63. Cimino S, Cerniglia L. Breastfeeding Apps: A Descriptive Report. Behavioral Sciences 2023;13(10):801 View
  64. Baskar D, Ngnepieba M, Paul P, Segovia N, Frick S. Conversations About Congenital Clubfoot: Investigating How Parents Share Information About a Structural Diagnosis With Their Children. Cureus 2023 View
  65. McDaniel B, Pater J, Cornet V, Mughal S, Reining L, Schaller A, Radesky J, Drouin M. Parents’ desire to change phone use: Associations with objective smartphone use and feelings about problematic use and distraction. Computers in Human Behavior 2023;148:107907 View
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  67. Kosaka M, Kotera Y, Masunaga H, Bhandari D, Miyatake H, Nishikawa Y, Komori N, Ozaki A, Beniya H. Emotional impacts of excursions on parents of children with medical complexity. Pediatrics International 2023;65(1) View
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  70. Khare J, Kalra S, Jindal S. Sociocrinology: Impact of Social Media on Endocrine Health – A Review. Indian Journal of Endocrinology and Metabolism 2023;27(6):480 View
  71. Nowland R, McNally L, Gregory P. Parents’ use of digital technology for social connection during the COVID‐19 pandemic: A mixed‐methods study. Scandinavian Journal of Psychology 2024;65(3):533 View
  72. Baiden P, Graaf G, Okine L, LaBrenz C. Association between Adverse Childhood Experiences and Unmet Health Care Needs among Children in the United States. Social Work in Public Health 2024;39(3):261 View
  73. Apps J, Webb S, Hutton E. Parents’ and carers’ attitudes to the use of digital technology and its role in the care of children with complex needs. British Journal of Occupational Therapy 2024;87(7):452 View
  74. Postma A, Ketelaar M, van Nispen tot Sevenaer J, Downs Z, van Rappard D, Jongmans M, Zinkstok J. Exploring individual parent‐to‐parent support interventions for parents caring for children with brain‐based developmental disabilities: A scoping review. Child: Care, Health and Development 2024;50(3) View
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Books/Policy Documents

  1. Simeonsson R, Simeonsson K. Public Health Perspectives on Disability. View
  2. Black D. Prevention, Recognition and Management of Fetal Alcohol Spectrum Disorders. View