Social Work - Theses
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ItemFamily caregiving and neonatal surgery: an exploration of parents' experience of caregiving following neonatal surgery for non-cardiac congenital anomalies( 2014)The neonatal evidence base has grown considerably in respect to understanding the acute, and longer-term, impact on families of premature birth and the admission of a newborn to neonatal intensive care (NICU). Less research attention has been paid to newborns that have required neonatal surgery for non-cardiac congenital anomalies, and the social and emotional experience of families that care for them. In particular, there have been no qualitative studies of this relatively under-explored population. The aim of this study was to explore the experience of families who were caring for an infant who had neonatal surgery for non-cardiac congenital anomalies, with particular reference to the manner in which parents experience caregiving that may result from these conditions. This thesis sought to explore this issue, and answer the research question: How do parents experience caregiving for an infant who has had neonatal surgery for a non-cardiac congenital anomaly? This qualitative study was designed using constructivist methodology. A descriptive qualitative research design was undertaken, using individual, face-to-face, in-depth interviews. Twenty-one parents of twelve newborns that underwent neonatal surgery at The Royal Children’s Hospital, Melbourne, Australia, for a non-cardiac congenital anomaly were interviewed between three to six months after discharge from hospital. Using thematic qualitative analysis, details of health-related caregiving demands, coping strategies, and social support used by families emerged. The results of this research indicate that parents performed many health-related caregiving tasks to maintain their infants’ health three to six months after leaving hospital, and that they did so with little practical support from external resources. A significant finding was parents’ descriptions of managing life threatening events at home. The results of this study also provide an understanding of parents’ uncertain journey throughout pregnancy, admission to NICU, and recovery from neonatal surgery. Normal and uncertainty emerged as two major themes that represented parents’ constructions of this family caregiving experience. Parents adapted to the challenges that they experienced, by moderating the uncertainty they felt, and altering their definition and perception of the caregiving experience to one of normalcy. From the findings, five core understandings were developed from parents’ perception of how their family adapted to this caregiving experience. Parents adapted by: 1. moderating the negative emotions that resulted from the perinatal journey 2. managing the pile-up of demands resulting from the health –related caregiving tasks 3. drawing upon existing approaches, and developing new, coping strategies 4. obtaining new sources of social support from the health system, however relying on the parenting couple as their primary resource. 5. altering their definition and perception of the caregiving experience. This is the first qualitative study to explore parents’ perspectives of family caregiving for infants with non-cardiac neonatal surgical conditions in Australia, and one of the few studies that has focussed on parents’ experience after coming home from NICU. This study provides a unique insight into family strengths and family adaptation in this caregiving situation. The findings of this study suggest the need for continuity of care for families after neonatal surgery for non-cardiac congenital anomalies. The results have implications for post-acute psychosocial support for families, and education of neonatal health care professionals. They also suggest that paying greater attention to the experience of parents with newborns who have undergone neonatal surgery for non-cardiac congenital anomalies is a worthwhile avenue for future neonatal research.