The moral dimensions of care of those with a moderate-severe intellectual disability from the perspective of parents

Integrating theories from critical feminist and disability theorists via a social constructionist perspective, this thesis uses the analysis of ten in-depth qualitative interviews to explore and describe the moral problems which arise in the care of a person with a moderate to severe intellectual disability from the perspective of parents in the 21st century. In essence this research is about understanding the journey of the participants and their needs and legitimisation of their voices in a broader discussion of care. It has been situated in the context of the societal changes that have occurred and the changes in values and attitudes that have governed the relationship between people with a disability and society over the past fifty years. Using the lens of a feminist ethic of care, particularly the framework of feminist writer, Joan Tronto, an exploration of the emerging moral problems of care identifies the key aspects of such care. Using a methodology based on a Grounded Theory approach, a core problem for the participants is identified as ‘the struggle to provide care and protection and promote wellbeing’, manifested in four defined arenas. The basic social process in which they engage is defined as ‘managing the struggle with integrity’ and the context for the care they provide is called ‘a relationship of dependence and vulnerability’. From a further analysis of the core problem, a number of specific moral problems faced by the participants are identified and explored. Throughout the research a focus is maintained on the lived experiences of those who care for a person with a moderate to severe intellectual disability. Important elements of care not included by Tronto are identified and a theoretical discussion of the moral dimensions of care includes a discussion of the application of a feminist ethic of care as distinct from an ethic of rights to the problems faced by the participants and implications of this for the work of care.