Paying to participate: financial, social and personal costs to parents of involvement in their children's care in hospital

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Abstract
Parental participation now has become an accepted feature of the care of children in hospital. However, the costs to parents of their involvement in the care of their hospitalized children have received little attention. In this paper the financial, social and personal costs to a group of parents of children admitted to a surgical ward are described. Financial costs included loss of earnings, travel and subsistence. Parents' financial commitment was open-ended and the burden of financial costs was inequitable. The organization of alternative care for siblings carried social costs including loss of privacy and autonomy in family relationships. Participation in care could be distressing and so result in personal costs. Differences between the socialization of parents and health care professionals explain some of these personal costs. Implications for policy makers and practitioners are considered.

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