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The experience of hospitalization for parents of a chronically ill child : an interpretive study Robinson, Carole Anne

Abstract

This interpretive study was designed to elicit parents' perceptions of their chronically ill children's hospitalizations for the purposes of: clarifying the meaning of hospitalization within the context of chronic illness; gaining insight into chronic illness in families having a child with chronic disease; and, determining interventions which may make hospitalization episodes more positive. Data were collected through in-depth interviews with nine parents from six families having hospitalized, chronically ill children. A semi-structured guide of questions was used for the initial interviews. Additional questions were generated by the data itself which enabled the researcher to construct accounts with the participants that addressed and explained their perspectives. An analytic framework of concepts, categories and themes which represent the parents' perspective was developed through constant comparative analysis of the accounts. The parents explained hospitalization, a facet of their long-term illness experiences, in relation to the themes of: acquiring information necessary to their understanding, controlling aspects of the experience for the ill child and for themselves, and relationships within the bureaucratic setting. Little has been written about hospitalization within the context of chronic childhood illnesses; however, related research studies were used for discussion purposes. It is apparent that the concerns the participants described are representative of the illness experience rather than solely associated with hospitalization. The data reveal that parents have a unique perspective with regard to hospitalization and the children's illnesses which is based on their experiences with illness and their unique understanding of chronicity. One can also conclude that parents have some common areas of concern during times of hospitalization which are useful guides for assessment. In terms of nursing practice, this implies that the parent's unique perspective must be elicited before care that is mutually satisfying can be negotiated. The implications for future research in the area relate to studies which will enhance nurses' understanding of clients' perspectives.

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