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Parents' perceptions of their family's experience when they have a child awaiting corrective heart surgery Edwards, Sheila Jean


The purpose of this phenomenological study was to determine the meaning parents give to their family's experience when they have a child awaiting corrective heart surgery. A secondary purpose was to identify appropriate interventions for nurses who deal with families during the transition period, from initial diagnosis of congenital heart disease until admission to hospital for corrective heart surgery. A convenience sample of six couples were interviewed at various times during the identified transition period, for a total of 11 interviews. An interview guide of open-ended questions provided some loose structure for the initial interviews. Analysis of the verbatim transcriptions began concurrently with data collection and continued during the formal analytic phase with meaning units emerging from the data. The parents described four facets of the experience: diagnosis of congenital heart disease, adjusting to caring for child once home, living with a child with a chronic condition, and waiting for corrective heart surgery. Not only did parents talk about how they felt during the four facets but they also described the range of coping strategies they employed through their experience. In discussing these findings within the context of other chronic illness experiences it became evident that parents draw from a common pool of coping strategies whether the child is in a chronic or more acute phase of an illness. Most of the parents in discussing their overall impressions of the experience had not found their child's illness to be as disruptive to family life as they had first anticipated. Those families with the most symptomatic infants seemed to have a particular need for an alliance with one health care professional to support them through the transition period. Generally, parents did not spend a lot of time dwelling on the corrective surgery until close to the anticipated date for that event; instead they employed various coping strategies which allowed them to normalize their lives. Implications for nursing practice which arise from these conclusions are multiple. Overall, nurses must assess the meaning that individual families give to their experience, assist families to employ suitable coping strategies, and offer support as necessary. General implications for nursing research are in the realm of studies which will further nurses' understanding of the waiting period for corrective heart surgery both from the parents' and the siblings' perspective.

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