Helping the Child with Chronic Disease: Themes and Directions

Abstract

Chronic childhood diseases affect some 10 percent of the population, with 1-2 percent being seriously affected. These conditions involve regular, often daily treatment and can be a potential threat to the quality of life of children and their families. In recent years, there has been much progress in documenting the extent of practical difficulties experienced at specific stress points (diagnosis, termination of treatment) and in understanding psychological and social variables which `buffer' the potential negative experience. However, methodological difficulties remain unresolved and theoretical ideas lack innovation. While there is general agreement that chronic illness affects the whole family, research continues to focus on mothers' concerns. There is however growing interest in the responses of other family members, especially healthy siblings. Work continues to focus on individual members with less attention paid to interactions. It is important that psychosocial work develops more closely in relation to changes in medical practice. In this respect, there is considerable interest in quality of life in children undergoing innovative or invasive procedures. Measurement of quality of life needs to become a routine part of assessment of changes in clinical practice. Alternative methodologies to measure quality of life are considered, and it is concluded that comprehensive assessments often need a more qualitative approach to data collection.