Exploring the experiences and perceptions of people with learning disabilities

Taylor, James and Hodge, Suzanne and Cookson, Alex (2019) Exploring the experiences and perceptions of people with learning disabilities. PhD thesis, Lancaster University.

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Abstract

In the first chapter, a systematic literature review explored the experiences of people with learning disabilities (LD) transitioning from long-term, residential care to community-based alternatives. Socio-political changes over the decades have resulted in many people with LD experiencing change to their ccommodation and care. Qualitative research exploring these experiences for people with LD was reviewed, adopting a meta-ethnographic approach. Nineteen papers were included in the review, and subsequently analysed and synthesised. Two over-arching themes regarding people with LD’s experiences of residential transitions were identified; From trauma to the unknown; and Striving to belong. The findings highlighted the impact of moving on people with LD, therefore theoretical and clinical implications were discussed. The second chapter presents the findings of an empirical paper, which explored the experiences and perceptions of people with LD who have been diagnosed with a ‘personality disorder’ (‘PD’). Under Transforming Care, more people with LD and complex needs are likely to move to the community. Therefore, the experience of receiving and living with a ‘PD’ diagnosis was investigated in people using current, community-based services. Eight people were interviewed, and the data analysed through use of Interpretative Phenomenological Analysis. Four super-ordinate themes were developed: Knowledge is power – Diagnosis as the domain of professionals; Understanding difficulties through a trauma lens; The stigma of diagnosis – Feeling different, seeking acceptance; and Taming the ‘beast’ inside – The journey towards regaining control. Clinical and research implications were discussed. In Chapter 3, a critical appraisal compared the findings of the two papers, whilst exploring the rationale for the research, the concept of ‘PD’, and the impact of Transforming Care on iv people with LD. Methodological considerations and implications for clinical practice were also discussed.