Chronic Illness in Childhood: A Comparative Study of Family Support across Four Diagnostic Groups

The trend of managing childhood illness at home, in preference to hospital admission, is now firmly established. Professional support in the community is however less consistent and its nature is not clearly understood, nor have the consumers' requirements been articulated. The pupose of this multi-disciplinary study is to identify the commonalities and differences in the response of families to chronic childhood illness and to explore the nature of support experienced by such families. The design for this exploratory study was qualitative; four families from each of four groups (cystic fibrosis, congenital heart disease, asthma and diabetes mellitus) were identified from hospital outpatient clinics. A semi-structured interview schedule was used to explore the impact on family life, coping strategies, support networks and satisfaction or otherwise with services provided. The data were analysed by the characteristic ‘funnel’ structure of ethnographic research. Progressive focusing helped to shape the direction of the second interview, and to guide the generation of theoretical description and explanation of family experience and support needs. Discussion of findings provides insights which may inform the practice of health professionals working with such families, and also decisions about appropriate professional support.