What can make things better for parents when babies need abdominal surgery in their first year of life? A qualitative interview study in the UK

Abstract

ObjectivesTo understand the experiences of parents of infants who required surgery early in life. To identify messages and training needs for the extended clinical teams caring for these families—including paediatric surgeons, neonatologists, nurses, obstetricians, midwives and sonographers.SettingUK-wide interview study, including England, Wales and Scotland.ParticipantsIn-depth interviews were conducted with 44 parents who had a baby who underwent early abdominal surgery. Conditions included those diagnosed antenatally (eg, exomphalos, gastroschisis, congenital diaphragmatic hernia) or those which were detected postnatally (eg, Hirschsprung’s disease, necrotising enterocolitis). Interviews were video and audio recorded and analysed using a modified grounded-theory approach.ResultsWhile some parents reported experiencing excellent communication and felt they were listened to and involved by the care team, this was not always the case. Dealing with large, complex medical and surgical teams could result in conflicting messages, uncertainty and distress. Parents wanted information but also described being overwhelmed and wanting to distance themselves to maintain hope. Information and support from other parents in hospital and online groups were highly valued. Of particular concern was support when going home and caring for their baby after discharge; an open access policy for readmission offered a helpful safety net.ConclusionsListening to the experience of parents provides rich data to enhance clinical understandings on how to improve information and communication with parents, and ameliorate the deep and lasting distress and anxiety that some parents feel when their infants face early surgery. We suggest that the writings of Bourdieu could have resonance in interpreting the experiences of parents as they enter the world of highly technical neonatal medicine and surgery and the knowledge of the professionals who work in these environments.

The challenges of caring for children who require complex medical care at home: ‘The go between for everyone is the parent and as the parent that’s an awful lot of responsibility’

“…Participants were purposely selected from an existing sample of 44 in-depth interviews with parents from the United Kingdom whose child had abdominal surgery in the first year of life. 19 Extracts from the interviews are available publicly on the Healthtalk.org website. 20 Parents talked about a broad range of issues such as diagnosis, birth planning, the surgery itself and life back home.…”

“…19,20 Although the original study was designed to explore parents' experiences of having a baby who needed abdominal surgery, many parents talked extensively about the longterm impact of caring for their children at home, which has not yet been explored in publications from this data set. 19,21 The interviews began with unstructured narrative prompted by an open-ended question and were followed up by a semi-structured component following up on issues raised by parents and themes suggested by the literature and advisory panel. The open narrative approach to the interviews lends itself to supra analysis, that is secondary analysis of an existing data set to investigate a different question to that of the primary research.…”

Outcomes at five to eight years of age for children with Hirschsprung’s disease

“…One way to improve the experience of parents of children who undergo surgery for HD is to increase the amount of reliable, easily understandable information that hospitals are able to give them regarding their child's diagnosis and likely long term health. 1 At present however, with the exception of data from a few groups, [2][3][4][5] there is little information available on which to base counselling of parents. It is therefore very difficult for surgeons to reference reliable information to help parents understand their child's diagnosis and probable treatment.…”

Parents and carers’ experiences of seeking health information and support online for long-term physical childhood conditions: a systematic review and thematic synthesis of qualitative research

“…Parents were found to have personal preferences for certain types of websites and their content. 21 23 26-28 31-42 Parents reported often favouring certain websites over others, which included official health information 25 To explore parents' experiences and perspectives of having a baby who needs early abdominal surgery; identify the questions and problems that matter to parents during and after their pregnancy and infant's surgery and identify the long-term impact on parents and families.…”