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

Abstract

BackgroundCongenital 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.ObjectiveAs 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.MethodsA 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.ResultsThe 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.ConclusionsThe 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.

Struggling and Overcoming Daily Life Barriers Among Children With Congenital Heart Disease and Their Parents in the West Bank, Palestine

“…The results also revealed some gender differences, as older boys were deprived from taking part in physical activities while girls were more occupied with concerns about fertility and their body image. From the parent's perspective, caring for a child with CHD can be described as a stressful experience with an impact on family life at various levels due to the increased burden and responsibilities imposed on these families (Almesned, Al-Akhfash, & Mesned, 2013;Wei, Roscigno, Hanson, & Swanson, 2015;Wray et al, 2018;Wray & Maynard, 2006). In a previous systematic review Wei et al (2015) concluded that 75% of the children with CHD reported greater stress, depression, emotional ups and downs, and anxiety than the general population.…”

Early morbidities following paediatric cardiac surgery: a mixed-methods study

“…We therefore hoped that the inclusion of an online forum as a method of engaging with families, alongside more traditional approaches, might enable us to access the views of those who find it hard to attend in person or take part in interviews and focus groups, adopting a similar approach to that used by our group previously. 75…”

Parental understanding of our communication of morbidity associated with paediatric cardiac surgery: a qualitative study

“…The Children’s Heart Federation (CHF), a national parent charity, facilitated and moderated a closed, anonymous, online discussion group via their Facebook page, following a similar approach to that reported in a previous separate study 22. The discussion group was advertised on the charity’s home web page23 and anyone who had experienced taking care of a child after heart surgery was eligible to participate.…”

“…By including an online forum as a method of engaging with families, alongside more traditional approaches, we hoped to access the views of those who find it hard to attend in person or take part in interviews and focus groups, adopting a similar approach to that used by our group previously 22. We report here views elicited from a charity-moderated online forum and from three focus groups.…”