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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

Wray, Jo, Brown, Katherine, Tregay, Jenifer, Crowe, Sonya, Knowles, Rachel, Bull, Kate and Gibson, Faith (2018) 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 Journal of Medical Internet Research, 20 (5).

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Background: Congenital heart disease (CHD) is the most common class of birth defects, which encompasses a broad spectrum of severity ranging from relatively minor to extremely complex. Improvements in surgery and intensive care have resulted in an increasing number of infants with the most complex lesions surviving after surgery until the time of discharge from the hospital, but there remain concerns about out-of-hospital mortality, variability in how services are provided at the time of discharge and beyond, and difficulties experienced by some families in accessing care.

Objective: As part of a mixed-methods program of research, this study aimed to elicit parental experiences of caring for a child with CHD after hospital discharge following a cardiac surgery and collect information to inform interviews for a subsequent stage of the project.

Methods: A closed online discussion group was set up via the main Facebook page of the Children’s Heart Federation (CHF), a national charity offering support to children with heart disease and their families. The discussion group was advertised through the charity’s webpage, and interested participants were directed to the charity’s Facebook page from where they could access the closed Facebook group and respond to questions posted. The CHF moderated the forum, and the research team provided questions to be posted on the forum. Responses were collated into a single transcript and subjected to thematic analysis.

Results: The forum was open for 4 months, and 91 participants (mean age 35 years, range 23-58 years, 89 females, 89 parents, and 2 grandparents) submitted demographic information and were given access to the closed forum group. A common experience of isolation emerged from the data, with descriptions of how that isolation was experienced (physical, social, knowledge) and its psychological impact, together with the factors that made it worse or better. Woven through this theme was the notion that parents developed expertise over time.

Conclusions: The use of an online forum provided a means for eliciting data from a large number of parents regarding their experiences of caring for their child after hospital discharge following cardiac surgery. Parents engaged with the forum and were able to articulate what went well and what went less well, together with sharing their stories and supporting each other through doing so. Some parents clearly found participating in the forum a positive experience in itself, demonstrating the potential of social media as a mechanism for providing support and reducing isolation. Information gained from the forum was used to shape questions for interviews with parents in a subsequent phase of the study. Furthermore, the themes identified in the online forum have contributed to identifying ways of improving the provision of care and support for parents of high-risk babies following discharge after cardiac surgery.

Item Type: Article
Divisions : Faculty of Health and Medical Sciences > School of Health Sciences
Authors :
Wray, Jo
Brown, Katherine
Tregay, Jenifer
Crowe, Sonya
Knowles, Rachel
Bull, Kate
Date : 9 May 2018
DOI : 10.2196/jmir.9104
Copyright Disclaimer : © Jo Wray, Katherine Brown, Jenifer Tregay, Sonya Crowe, Rachel Knowles, Kate Bull, Faith Gibson. Originally published in the Journal of Medical Internet Research (, 09.05.2018. This is an open-access article distributed under the terms of the Creative Commons Attribution License (, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on, as well as this copyright and license information must be included.
Uncontrolled Keywords : Congenital heart disease; Parents; Online forum; Isolation
Depositing User : Clive Harris
Date Deposited : 15 May 2018 13:43
Last Modified : 16 Jan 2019 19:09

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