A comparison study of parental adaptation following a child's death at home or in the hospital

Abstract

Mothers and fathers of 37 deceased pediatric oncology patients were interviewed 3 to 28 months after their child's death. Twenty-four of these families had participated in a formal Home Care Program for dying children, whereas the remaining 13 families had children who died in the hospital. Parental adaptation following the home care experience appeared to be more favorable than following terminal care and death in the hospital. Specifically, the parents who had cared for their terminally ill child at home displayed more positive adjustment patterns as indexed by their perception of how the child's death had affected their marriage, social reorientation, religious beliefs, and views on the meaning of life and death. Ratings given by parents providing home care indicated a significant reduction in guilt during the home care experience which was maintained at 6 and 12 months following the child's death. In contrast, parents who did not provide home care reported intensified feelings of guilt during their child's terminal hospitalization which were unresolved at one year after the child's death. The results are discussed in terms of the practical and emotional benefits that may be derived from a family's voluntary choice of home care for dying children.