The concept of choice is now being promoted strongly in health and social care, especially for people with learning disabilities, yet there has been relatively little systematic examination of how they makes choices and decisions, and how they should be supported to do so. The examples from the literature have either been conducted in artificial, experimental settings, ignoring the social context of the lives of these individuals, or value based, rather than empirical. This study aimed to investigate this gap by exploring how people with learning disabilities make choices in their everyday lives, and what happens when they make them. An action research group was convened for twenty sessions in which learning disabled participants explored what they wanted to change about where they lived, then were supported by the group to make these changes. A qualitative design was used and data were analysed using Grounded Theory. Participants described significant conflict in their homes and in their local neighbourhoods. They described using a number of strategies to solve problems in their lives - some more successful than others. All participants seemed able to solve straightforward problems on their own, but this often involved accommodating to situations of conflict or harassment. Some participants succeeded in solving more complex problems by mobilising people in their immediate social network, often using step-by-step plans. This could be seen as an indication that participants made the same problem-solving errors in real-life settings that have been found in more experimental situations. Alternatively, the findings can be seen as supporting a social model of learning disability by identifying areas of 'cultural competence' .

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This aim of this thesis is to describe and explore issues relating to researching in partnership with people with learning disabilities and health and social care practitioners working in learning disability services; with particular reference to drivers for partnership research, ways of researching in partnership, the potential benefits and tensions encountered in partnership research and the role of the researcher within partnership research. The thesis then sets out an agenda for the future of partnership research. Sixteen papers are presented; three of which are a product of partnership research with people with learning disabilities, and thirteen of which are a result of partnership research with practitioners. These papers are on a range of topics including advocacy, holidays, autism, self-injurious behaviour, outcome measurement, access to hospital and learning disability services, and the role of support workers. A variety of qualitative and quantitative research methods have been used in the studies including systematic reviews, focus groups, interviews, surveys, life stories and quasi-experimental design. The thesis identifies political, conceptual, theoretical, ideological, professional, organisational and individual drivers for partnership research in order to provide a background to the papers. The range of methods which have been used when researching in partnership is reviewed and the research reported in the papers is then set within this context. The benefits and tensions inherent in partnership research are discussed and examples from the research presented in the thesis are used to highlight these. The role of the professional researcher within partnership research projects is also discussed; for example, the tendency to play down the researcher's contribution in partnership research with people with learning disabilities and the varied and complex nature of partnership research. The impact of the partnership research is discussed in relation to the benefits to the eo-researchers, people with learning disabilities and local services. The research findings have been shared locally, nationally and internationally, and the thesis demonstrates how they have made a wide-ranging contribution to the existing evidence base about people with learning disabilities and the services they receive. Finally, an agenda for future partnership research is established.

The current study investigated the experiences of parents whose children have a profound and multiple learning difficulty (PMLD) and are preparing to transition from post-16 education into adult services and further education. A systematic literature review was initially conducted into the topic area. The selected studies were critiqued in terms of sampling, methodology and data analysis. Thematically, several key topics emerged in the selected research papers. These included parents' positive and negative experiences of transition planning, emotional and information needs during the process as well as experiences of working with professionals. This qualitative research was conducted in an ethnically diverse outer London borough and all parents who took part in the research are from Black Minority Ethnic (BME) communities. Five participants took part in the study and the sample was obtained from a special needs school in the borough which offers post-16 provision for young people with highly complex needs. The study focused on the following key areas: parental role during transition planning, the role of professionals and social support networks, positive experiences of the transition process, as well as potential barriers to effective transition planning. Semi-structured interviews were used to gather data which were then analysed using Interpretative Phenomenological Analysis (IPA). Several key themes were identified in the data. These included the emotional impact of transition planning, parental role in the process, as well as positive and negative experiences of working with professionals. Other themes related to marginalisation I~"------------------------------------ 11" ~ .. --------------------------------------- b ii and isolation within society as well as the perceptions of PMLD in different BME communities. Concern about the future was also a prominent theme, particularly in relation to the current national and economic context. Key Words: Transition, young people, adulthood, parents, disability, profound and multiple learning difficulty, Black Minority Ethnic communities.

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Primary and secondary health services have a duty to provide for the health needs of people with learning disabilities. Previously this group of the population may have experienced segregated and/or a lack of adequate health services. However a combination of legislation, Government policies and guidelines and improved advocacy has placed pressure on primary and secondary healthcare to provide more equitable services. Much of the research already undertaken has focused on primary care or planned admissions within mainstream hospital. The following research sought to investigate emergency healthcare - as delivered via Accident & Emergency - from the perspective of the carers of people with learning disabilities. The work was undertaken in two separate A&E departments. An Interpretative Phenomenological Approach was used to analyse interviews undertaken with carers. Some of the findings which emerged were in keeping with past literature. However some differed from that previously reported - major concerns were not raised by carers about consent or staff attitudes, although the relationship staff had with both service users and carers was considered to be fundamental to a high quality service. The themes identified included Interactions that are valuing, Emotional responsiveness, Support, Compliance and Responsibilities. Given accounts in previous literature, most participants were surprisingly positive about their experiences.

This research attempts to answer the demands from previous literature to extend the use of systematic preference testing, and to enable people to make choices by enhancing the modes of communication of preference. It looks at the viability of systematic preference testing, embedded observations of preference, and the use of staff opinion to predict the person preference of people with a profound learning disability and high support needs. The data collected from 17 adults with a profound learning disability and high support needs was analysed using the city block metric to permit informal statements about the trends within the data. More formal statistical testing was invalid due to difficulties during the data collection phase. The results suggest that the use of systematic preference testing without previous training has limited application within this population. There is a tentative suggestion that embedded preference observations may be more widely accessible for this population. However, there is not a measurement of embedded observations validity within this study. Also, the accuracy of staff opinion of preference seemed to depend on the relationship between the participant and the staff member. Caution is advised in generalising the results of this study due to the difficulties in recruiting staff to be involved.