The social construction of illness experience: families with a chronically-ill child

This paper examines how parents constructed the illness of a child with chronic sickness. The focus is on eliciting the parents' explanatory model of illness, that is, how they understood and described their child's illness, and how they managed their interactions with the child. The data were collected by using an ethnographic approach. In addition to obtaining parents' accounts, naturally occurring interactions between parents and children were observed and tape recorded. The paper discusses the parents' semantic definition of the "child as normal'. In actual practice, however, the child's life was regulated by the parents' understanding of the biomedical model, and included time schedules dictated by the sickness and seclusion from other children. Adjustment in family lifestyle was seen as necessary to accommodate the child's health problem. It is argued that the parents' interactions with the child contain the essential feature of paradoxical communication. An ethnographically based theoretical model of the social construction of sickness careers is introduced. The paper gives verbatim accounts of naturally occurring interactions so that the reader has access to the data upon which the author's interpretations are based. The implications for nursing practice are discussed.