Scambler, Sasha Jane; (2004) Juvenile Batten disease: A challenge to conventional sociological approaches of chronic illness and disability. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Demographic trends towards an ageing population and advances in the treatment of acute conditions and in the efficacy of life preserving treatments have led to an increase in the number of people living with chronic illnesses. These developments, along with the recognition of chronic illness as the most common cause of impairment in the developed world, have raised the profile of chronic illness and the associated issue of disability, making them an increasingly important aspect of the study of healthcare. This thesis explores the experiences of families of children and young adults living with juvenile Batten disease - a rare neurodegenerative chronic condition - as an exemplar of the changing nature of chronic illness and disability towards the end of the twentieth century. The ongoing debates around definitions and attitudes are examined with particular reference to the symbiotic, and often antagonistic, relationship between biomedicine and sociology in this area. The experiences of the families of children and young adults with juvenile Batten disease, and the methodological dilemmas inherent in studying a condition of this kind are used to challenge existing approaches to the field. The changing nature of the experience of chronic illness is explored through the growth in community care, self-help and wider access to information. This is related to the sociological literature on chronic illness and disability with specific reference to the role of users and experts in the research context, the place of the body within the literature, the challenge to biomedicine inherent in both literatures, and the social model of disability. It is suggested that the remit of the sociology of disability needs to be widened to address the embodied nature of disability and to better incorporate disabilities caused by chronic illnesses and rare diseases, profound multiple disabilities and degenerative conditions.

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