Published on in Vol 20, No 5 (2018): May

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/9104, first published .
Parents’ Experiences of Caring for Their Child at the Time of Discharge After Cardiac Surgery and During the Postdischarge Period: Qualitative Study Using an Online Forum

Parents’ Experiences of Caring for Their Child at the Time of Discharge After Cardiac Surgery and During the Postdischarge Period: Qualitative Study Using an Online Forum

Parents’ Experiences of Caring for Their Child at the Time of Discharge After Cardiac Surgery and During the Postdischarge Period: Qualitative Study Using an Online Forum

Journals

  1. Alphonso N, Angelini A, Barron D, Bellsham-Revell H, Blom N, Brown K, Davis D, Duncan D, Fedrigo M, Galletti L, Hehir D, Herberg U, Jacobs J, Januszewska K, Karl T, Malec E, Maruszewski B, Montgomerie J, Pizzaro C, Schranz D, Shillingford A, Simpson J. Guidelines for the management of neonates and infants with hypoplastic left heart syndrome: The European Association for Cardio-Thoracic Surgery (EACTS) and the Association for European Paediatric and Congenital Cardiology (AEPC) Hypoplastic Left Heart Syndrome Guidelines Task Force. European Journal of Cardio-Thoracic Surgery 2020;58(3):416 View
  2. Rajagopal V, Brown K, Pagel C, Wray J. Parental understanding of our communication of morbidity associated with paediatric cardiac surgery: a qualitative study. BMJ Paediatrics Open 2020;4(1):e000578 View
  3. Kamiński M, Borger M, Prymas P, Muth A, Stachowski A, Łoniewski I, Marlicz W. Analysis of Answers to Queries among Anonymous Users with Gastroenterological Problems on an Internet Forum. International Journal of Environmental Research and Public Health 2020;17(3):1042 View
  4. Salvador P, Alves K, Rodrigues C, Oliveira L. Online data collection strategies used in qualitative research of the health field: a scoping review. Revista Gaúcha de Enfermagem 2020;41 View
  5. Steward D, Ryan-Wenger N, Harrison T, Pridham K. Patterns of Growth and Nutrition From Birth to 6 Months in Infants With Complex Congenital Cardiac Defects. Nursing Research 2020;69(5S):S57 View
  6. Pridham K, Harrison T, Brown R, Mussatto K. Collaborative caregiving of parents who have an infant with congenital heart disease. Journal for Specialists in Pediatric Nursing 2020;25(2) View
  7. Brown K, Pagel C, Ridout D, Wray J, Tsang V, Anderson D, Banks V, Barron D, Cassidy J, Chigaru L, Davis P, Franklin R, Grieco L, Hoskote A, Hudson E, Jones A, Kakat S, Lakhani R, Lakhanpaul M, McLean A, Morris S, Rajagopal V, Rodrigues W, Sheehan K, Stoica S, Tibby S, Utley M, Witter T. Early morbidities following paediatric cardiac surgery: a mixed-methods study. Health Services and Delivery Research 2020;8(30):1 View
  8. Hoffman M, Karpyn A, Christofferson J, Neely T, McWhorter L, Demianczyk A, James, MSLIS R, Hafer J, Kazak A, Sood E. Fathers of Children With Congenital Heart Disease: Sources of Stress and Opportunities for Intervention. Pediatric Critical Care Medicine 2020;21(11):e1002 View
  9. Sood E, Wysocki T, Alderfer M, Aroian K, Christofferson J, Karpyn A, Kazak A, Pierce J. Topical Review: Crowdsourcing as a Novel Approach to Qualitative Research. Journal of Pediatric Psychology 2021;46(2):189 View
  10. Roberts S, Kazazian V, Ford M, Marini D, Miller S, Chau V, Seed M, Ly L, Williams T, Sananes R. The association between parent stress, coping and mental health, and neurodevelopmental outcomes of infants with congenital heart disease. The Clinical Neuropsychologist 2021;35(5):948 View
  11. Oulton K, Gibson F, Williams A, Geoghegan S, Aldiss S, Wray J. Supporting families of children with an undiagnosed genetic condition: Using co‐design to ensure the right person is in the right post doing the right job. Child: Care, Health and Development 2021;47(3):300 View
  12. Stewart A, Smith C, Eaton S, De Coppi P, Wray J. COVID-19 pandemic experiences of parents caring for children with oesophageal atresia/tracheo-oesophageal fistula. BMJ Paediatrics Open 2021;5(1):e001077 View
  13. Moore E, Gephart S. State of the science of care coordination, rurality, and well-being for infants with single ventricle heart disease in the Interstage period, an integrative review. Heart & Lung 2021;50(5):720 View
  14. Sood E, Lisanti A, Woolf-King S, Wray J, Kasparian N, Jackson E, Gregory M, Lopez K, Marino B, Neely T, Randall A, Zyblewski S, Brosig C. Parent mental health and family functioning following diagnosis of CHD: a research agenda and recommendations from the Cardiac Neurodevelopmental Outcome Collaborative. Cardiology in the Young 2021;31(6):900 View
  15. Dellafiore F, Belloni S, Caruso R, Udugampolage N, Flocco S, Baroni I, Colaceci S, Magon A, Conte G, Manco F, Russo S, Villa G, Arrigoni C. What is the Experience of Parents During the Home Care Management of Children With Congenital Heart Disease, Following Cardiac Surgery? Findings From a Metasynthesis. The Family Journal 2022;30(2):209 View
  16. Boursier V, Gioia F, Coppola F, Schimmenti A. eHealth content-sharing and emotional support among Italian parents of children with Down Syndrome: A qualitative report. Journal of Intellectual & Developmental Disability 2022;47(3):240 View
  17. Puriani D, Allenidekania A, Afiyanti Y. The Experience of Uncertainty in Mothers Caring for Children at Home after Palliative Heart Surgery. Indian Journal of Palliative Care 2023;29:46 View
  18. Stewart A, Smith C, Govender R, Eaton S, De Coppi P, Wray J. Parents’ experiences of feeding children born with oesophageal atresia/tracheo-oesophageal fistula. Journal of Pediatric Surgery 2022;57(12):792 View
  19. Imperial-Perez F, Pike N, Doering L, Eastwood J, Heilemann M. Caregiving for Interstage Infants: A Continuous Process of Compromise During the Pandemic. World Journal for Pediatric and Congenital Heart Surgery 2022;13(4):443 View
  20. Wray J, Pagel C, Chester A, Kennedy F, Crowe S. What was the impact of the first wave of COVID-19 on the delivery of care to children and adults with congenital heart disease? A qualitative study using online forums. BMJ Open 2021;11(9):e049006 View
  21. Ay A, Koç G. The effect of nursing care and follow-up for mothers of infants undergoing congenital heart surgery: a quasi-experimental study. Cardiology in the Young 2023;33(9):1649 View
  22. Demianczyk A, Bechtel Driscoll C, Karpyn A, Shillingford A, Kazak A, Sood E. Coping strategies used by mothers and fathers following diagnosis of congenital heart disease. Child: Care, Health and Development 2022;48(1):129 View
  23. Franklin M, Karpyn A, Christofferson J, McWhorter L, C Demianczyk A, L Brosig C, A Jackson E, Lihn S, C Zyblewski S, E Kazak A, Sood E. Barriers and facilitators to discussing parent mental health within child health care: Perspectives of parents raising a child with congenital heart disease. Journal of Child Health Care 2023;27(3):360 View
  24. Wilcocks C, Enlow P, Wasserman R, Wysocki T, Lee J, Aroian K, Pierce J. Development and Evaluation of the Pediatric Diabetes Routine Questionnaire for Parents of Young Children with Type 1 Diabetes. Journal of Clinical Psychology in Medical Settings 2023;30(1):216 View
  25. Gramszlo C, Karpyn A, Christofferson J, McWhorter L, Demianczyk A, Neely T, Zyblewski S, Shillingford A, Kazak A, Sood E. Meeting Parents' Needs for Education and Preparation following Congenital Heart Disease Diagnosis: Recommendations from a Crowdsourced Study. American Journal of Perinatology 2024;41(S 01):e446 View
  26. Siga Tage P, Azi Djogo H, Febriyanti E, Letor Y, Bina M, Goa M, Gatum A. Parents’ Experiences of Caring for Children with Congenital Rubella Syndrome (CRS) in Remote and Rural Areas of Indonesia. Nurse Media Journal of Nursing 2023;13(1):56 View
  27. Letot J, Zanni L, Devouche E, Untas A. Surcharge parentale chez les parents d’enfants atteints de cardiopathie congénitale. Contraste 2022;N° 56(2):137 View
  28. Pridham K, Nemykina Y, Connor A, Melby J, Brown R. Caregiving and Support Issues Identified by Parents of an Infant With Congenital Heart Disease for Interactive Problem-Solving. Research and Theory for Nursing Practice 2023;37(2):131 View
  29. Pridham K, Melby J, Harrison T, Brown R, Mussatto K. Guided Participation Support of Coparenting an Infant With Complex Congenital Heart Disease: A Randomized Pilot Feasibility Study. Research and Theory for Nursing Practice 2022;36(4):361 View
  30. Driscoll C, Christofferson J, McWhorter L, Demianczyk A, Brosig C, Jackson E, Gramszlo C, Zyblewski S, Kazak A, Sood E. A Psychosocial Care Model for Families Affected by Congenital Heart Disease*. Pediatric Critical Care Medicine 2023;24(11):901 View
  31. Mohiuddin T, Raol N, Tey C, Horný M, Zhang C, Sharp W, Chanani N, Patzer R. Quantifying the Healthcare Burden of Pediatric Feeding Disorder after Congenital Heart Surgery. The Journal of Pediatrics 2023;261:113593 View
  32. Dong W, Guo J, Wang L, Zheng S, Zhu B, Shao J. Trend of Mortality Due to Congenital Anomalies in Children Younger Than 5 Years in Eastern China, 2012-2021: Surveillance Data Analysis. JMIR Public Health and Surveillance 2024;10:e53860 View
  33. Wray J, Pagel C, Coats L, Chester A, Kennedy F, Crowe S. What does good care look like to people living with congenital heart disease in the 21st century? Qualitative online, asynchronous discussion forums. BMJ Open 2024;14(7):e079691 View
  34. Gaskin K, Daniels A. Enhancing discharge preparation for parents after complex cardiac surgery: evaluation of an e-learning resource for nurses. Nursing Children and Young People 2024 View
  35. Elissa K, Sparud-Lundin C, Axelsson Å, Khatib S, Bratt E. Struggling and Overcoming Daily Life Barriers Among Children With Congenital Heart Disease and Their Parents in the West Bank, Palestine. Journal of Family Nursing 2018;24(4):585 View