Murray, Pippa (2004) Living with the spark : recognising ordinariness in the lives of disabled children and their families. PhD thesis, University of Sheffield.
Abstract
Over recent decades, while substantial advancements have been made in the understanding of living with impairment in a disabling world, the family experience of disablement has been less widely recognised. This thesis is primarily a comparative exploration of literature around disabled family experience, augmented by a small amount of fieldwork to test out a developing theoretical framework through which to develop support systems enabling disabled children and their families to live ordinary lives. Data collection involved 18 months of in-depth and serial qualitative interviewing with 6 families. Disabled children/young people, their non-disabled brothers and sisters and their parents were engaged in the process through interviews, conversations, artwork, ‘spending time with’, and ‘going out with’. Visits to a range of family support services took place and the views of service providers were included through interviews, networking, meetings, conversations and collaborative working. Placing the data firmly within the context of a disabling world, it is evident that all family members suffer from disablement. It is equally evident that this understanding is not reflected in the theoretical perspectives informing support services. The thesis identifies key features of a theoretical framework to underlie the provision of support services that might allow families to lead ordinary lives. Central to this framework is the position of paradox in the lives of families living with impairment and disablement; the recognition of the family experience of disablement; the need for family support services to be based firmly within an understanding of our interdependent nature; and finally, the need for support services to prioritise respectful relationships.
Metadata
Awarding institution: | University of Sheffield |
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Academic Units: | The University of Sheffield > Faculty of Social Sciences (Sheffield) > School of Education (Sheffield) |
Identification Number/EthosID: | uk.bl.ethos.408824 |
Depositing User: | EThOS Import Sheffield |
Date Deposited: | 11 Oct 2023 09:18 |
Last Modified: | 11 Oct 2023 09:18 |
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