Managing the body? : the experience of Prader-Willi syndrome within families

Prader-Willi syndrome (PWS) is a rare chromosome disorder, which has among its clinical sequela an intense interest in food, which may develop into an insatiable obsession, likened to addiction. The level of control over diet and the body required within PWS is very hard for people to achieve alone, since the majority of sufferers experience various forms of learning disability, autistic-spectrum disorders, developmental delay and behavioural problems. The thesis is particularly concerned with developing an understanding of the management of diet and food within the household and other everyday practices affecting the body or the child with PWS. The research is based on data from twenty qualitative case studies of English families which incorporate a child with PWS between the ages of eleven and fifteen years. The twenty families are purposively sampled to reflect difference in socio-economic status and family structure. Analysis of management strategies highlights the centrality of embodied agency in directing everyday practices and actions, this being particularly apparent in children with PWS as their experience of embodiment and emotion differs significantly from other family members. Focusing on the multi-dimensional nature of processes surrounding body management, the research identifies management practices and values of family members which guide these. The thesis also addresses the patterning of management strategies by social factors of family structure and socio-economic status. The work relates to contemporary sociological studies of the experience of chronic illness and disability in childhood, food, the body and the family, and contributes to current debates about embodiment, agency and health inequalities. Located in the intersections of the sociology of health and illness, disability studies and social theory, the study represents the first UK empirical sociological study of PWS.