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

Abstract

BackgroundFollowing paediatric cardiac surgery, quality of life may be significantly impacted by morbidities associated with cardiac surgery. Parental understanding of the potential for postoperative morbidity is important for informed decision making. As part of a broader research study, we aimed to elicit parental understanding and experience of the communication of morbidities following their child’s cardiac surgery, using traditional focus groups together with an online forum.MethodsThe Children’s Heart Federation set up and moderated a closed, anonymous online discussion group via their Facebook page, focusing on complications, information needs and methods of providing families with information. Additionally, we ran three focus groups with parents/carers, moderated by an experienced independent professional. Focus groups were recorded and transcribed and a single transcript was generated from the online forum. All transcripts were thematically analysed.ResultsAll data were collected in 2014. The forum ran over 3 months in 2014 and involved 72 participants. Focus groups involved 13 participants. Three broad themes were identified: (1) clinicians’ use of language, (2) feeling unprepared for complications and (3) information needs of families.ConclusionsClinicians’ language is often misunderstood, with wide variability in the way morbidities are described, and between differing teams looking after the same child. Information may not be easily absorbed or retained by families, who often felt unprepared for morbidities that arose after their child’s heart surgery. Here, we propose key principles of good communication tailored to the individual receiving it.

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

“…The Children's Heart Federation, Little Hearts Matter and the Somerville Foundation, all of which are national UK charities dedicated to the support of patients with CHD and their families, facilitated and moderated one or more closed, anonymous, asynchronous online discussion groups via their Facebook pages, following an approach that we have successfully used in previous work. 19 20 We specifically chose these three charities because we wanted to collect views across age ranges (parents of younger children, teenagers and adult patients with CHD) and from those with complex and less complex CHD. Questions were developed by the authors and the content and language revised based on feedback from the charity representatives and PPI group.…”

Morbidities After Cardiac Surgery: Impact on Children’s Quality of Life and Parents’ Mental Health

“…10 Our qualitative research showed that clinicians and parents hold differing views about which specific postoperative events should be counted as adverse early outcomes of pediatric cardiac surgery. 11,12, Therefore, we used the term morbidity, a state of health generally viewed as bad for you, to label the range of adverse early outcomes (excluding death). We recognized that not all such adverse early outcomes are directly caused by the surgical procedure, although they do arise as a direct consequence of children undergoing cardiac surgery.…”

Effects of pulmonary fissure completeness on major outcomes in children after video-assisted thoracoscopic congenital lung malformation lobectomy

“…We believe that these data and analyses can help surgeons, because the degree of PFC can be preliminarily assessed with preoperative computerized tomography [ 17 ]. This preliminary assessment can be used to inform the the surgeon’s preoperative decision regarding which surgical to use and the surgeon’s communication with the patient’s family, informing them of the possible postoperative complications, which constitute an important part of preoperative conversations with family members [ 30 ].…”