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UBC Theses and Dissertations

Parents’ perceptions of their experiences of caring for an infant or toddler under three years of age with inslulin dependent diabetes mellitus Hatton, Doreen Lillwall


The purpose of this phenomenological study was to explore and describe the lived experience of parents who were caring for a child under three years with diabetes, and to gain insight into this experience from the parents’ perspective. The objectives of the study were to gain knowledge and understanding of the parents’ needs and concerns related to caring for their child so that appropriate support and services can be planned, developed and implemented for this unique and growing population over the long-term. A purposive sample of eight, two-parent families with diabetic infants or toddlers were selected according to the characteristics and knowledge each possessed. Data were collected through a series of fourteen in depth, minimally-structured, audio taped interviews conducted over a five-month period. Tapes were transcribed verbatim and the data subjected to phenomenological analysis. Constant comparative analysis was employed throughout the data collection process to permit analyzed material to guide construction of the parents’ accounts. The parents described three distinct phases of their experience: the diagnosis of diabetes and the child’s admission to hospital, adjusting to caring for the young child at home, and incorporating the child’s diabetic management regimen into family life over the long-term. Each phase was linked to a timeframe and organized into major conceptual categories and themes constructed from the parents’ accounts. Findings revealed that parents experience inordinate amounts of stress that appear to be exacerbated by the child’s young age, the all-pervading nature of diabetes, the lability of the child’s condition, and the demands and fears associated with the complex daily management regimen. Parents talked at length about their emotional reactions to these multiple stressors, and also described the coping strategies they used to handle their situation throughout the experience. While some conclusions of this study confirmed findings of other studies related to caring for a child with diabetes, other conclusions revealed entirely new findings. Problems associated with multiple losses for parents and child, significant findings specific to developmental issues resulting from the young age of the child at diagnosis, the major role played by fathers in sharing responsibility for care of these children, and the frustrations of coping with the labile and unpredictable nature of the young child’s diabetes, appeared particularly relevant to this unique population. Implications for nursing practice include the provision of educational and respite care services, the provision of empathy and support, and empowerment of parents by assisting families with adaptation and stress reduction. Implications for nursing and technological research are in the realm of studies to further the understanding of the needs of these young children and their parents, and in the development of non-invasive procedures to reduce the complexity of the daily management regimen.

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