Mothers' evolving relationships with doctors and nurses during the chronic childhood illness trajectory.

Abstract

In this paper the evolution of mothers' relationships with doctors and nurses during the chronic childhood illness trajectory is explored and discussed and the implications for child health care are considered. The discussion reports one aspect of a qualitative study that sought to determine whether time of diagnosis influenced mothers' coping across the illness trajectory. The quality of relationships between mothers, who are usually the primary carers, and nursing and medical staff is central to the experience of coping with chronic childhood illness. Mothers need to develop expertise in a wide range of technical skills and knowledge of complex health care issues, while also coming to terms with the uncertainty of a condition with an unpredictable trajectory. Attempts to understand the significance of relationships between those living with chronic illness and staff have highlighted a number of factors that may influence the degree to which they are viewed as satisfactory. The way staff communicate with families has been identified as one of the mediating processes through which the quality of such is determined. Mothers of 15 children diagnosed presymptomatically and 14 children diagnosed postsymptomatically with the chronic illness Vesicoureteric Reflux (VUR) were interviewed to assess and compare coping strategies across the trajectory. Mothers' written consent was obtained and interviews were tape-recorded, transcribed and analysed using the 'Framework Technique'. The need to develop and sustain trusting relationships with staff was reported as a continual source of stress for mothers. The formation of satisfactory alliances, based on mutual respect and good communication early in the trajectory, in particular during the prediagnostic phase, was found to be instrumental in coping and competence development during the later chronic phase of the trajectory. Further research is needed to map prospectively the evolution of relationships between mothers and staff across the trajectory.