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Obesity and being overweight are known contributors to ill health and are subject to growing concern from health professionals and policy makers. The prevalence of obese and overweight adults is higher in the learning disability population than in the general population for reasons that are unclear. Food choice is influenced by many social and environmental factors. Constructions of health may also affect food choice, influencing the extent to which individuals believe it is worth acting upon healthy eating messages. This thesis examines the attitudes towards food of adults with learning disabilities and the meanings they attached to health, to healthy eating and to food. Using data gathered from interviews with 23 people with learning disabilities in the Greater Glasgow area, it demonstrates the multiple meanings ascribed to food and the many barriers to food choice people with a learning disability experience. The data found that participants held complex, often competing ideas about health. Many did not believe that it was something over which they could exert any meaningful control and this negatively impacted on their actions to improve their health. Choice and control were found to be the two most important elements in construction of food choice. Although almost all participants had a good basic knowledge of healthy eating guidelines, decisions about food and food choice were often taken by support workers, parents, family members or other gatekeepers. This lack of choice and control over food was reflected in their opportunities in their wider lives and impacted on their attitudes towards their general health. Participants became disengaged from the processes associated with food and some believed that they were not capable of developing their skills or implementing their dietary knowledge. Further, health was viewed as being subject to luck or the intervention of others. Without a sense of self-efficacy in their wider lives, people with learning disabilities might struggle to make positive changes for their health.

This thesis explores resilience in parents of adults with intellectual disability. It comprises two chapters. The first chapter is a systematic literature review which examines quantitative research reporting psychosocial outcomes of caring for an adult child with intellectual disability. From the 23 identified papers, the findings show that parents of adults with intellectual disability have significantly poorer psychosocial outcomes when compared to non-caregiving populations. However, further longitudinal research is needed to establish predictors of poor psychosocial outcomes in parents of adults with intellectual disability. The second chapter is an empirical qualitative study which explores the experience of caring for a child with Down syndrome across 50 years. Four main themes were discussed – early experiences and feelings of having child with Down syndrome, factors that enabled carers to cope with raising a child/sibling with Down syndrome, experience of caring for an adult with Down syndrome and positive experiences of caring for a child/sibling with Down syndrome. Overall, the study highlights the resilience of parents who care for a child with Down syndrome across their lifespan in their ability to adjust to the challenges of this role and draw on the positives of the experience.

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This study aimed to build an understanding of the internal and external factors that affect the bereavement process in people with intellectual disabilities (PWID). This was achieved by drawing on my previously published works, by analysing the research of others and by applying a critical clinical reflection to examples from my practice as a dramatherapist with PWID, through the use of vignettes. The study is uniquely concerned with what can be learned by exploring the significance of the attachment relationship, the complexity of dependency and the effect of living with the primary trauma of disability on bereavement and grieving. A comprehensive analysis of the existing research revealed that there is little understanding of the normal bereavement process in PWID and that there is a high incidence of complicated grief. The critical reflection on practice enabled me to enlarge upon the emergent theory of complex grief and to identify important components. By applying the lens of attachment theory a greater awareness of how grief can become complicated has been reached that can inform the design of more responsive services for PWID. This study has highlighted that there are both internal and external reasons which may explain some of the emerging evidence that points to an abnormally high incidence of complicated grief in PWID (Brickel and Munir 2008 and Dodd and Guerin 2009), A new model of psychodynamic disability psychotherapy has emerged from this study, which proposes to include the supportive network as a component of the therapeutic treatment for PWID. The model and findings from this study can be used to inform the development of appropriate bereavement support for PWID. The findings can be further used in order to promote more supportive and effective practice from Health and Social Care Professionals towards families when a baby with intellectual disabilities is born.

Mental health needs are more prevalent in people with learning disabilities than in the general population, with practically all categories of mental illness represented. The literature, however, indicates that the views of people with learning disabilities who have experienced concomitant mental health needs have received little exploration. The primary aim of this research project was to investigate the experience of mental health needs from the individual perspectives of adults with learning disabilities. A major focus of the study involved adapting the psycho-social conception of subjectivity and methodological framework, which has been developed by Hollway and Jefferson (2000), and employing this as a means of enabling the participation of people with learning disabilities in knowledge production relating to their care and support needs. Data production was based on case studies of seven service users who have presented mental health issues. Methods for data production included ‘free-association narrative interviews’, an examination of relevant case records, as well as information provided by key care/support staff. Data analysis involved working with the whole of the material gained during fieldwork, and paying attention to links and inconsistencies within that whole. The participants’ free associations were afforded precedence over narrative coherence. Interpretation was theoretically informed, and researcher reflexivity was interwoven throughout the process. The main conclusions drawn from this research project are:- 1) The ‘free association narrative interview’ method provided an innovative and effective means of addressing the power asymmetry between the researcher and research participants; 2) Information elicited from the research participants reflected the various traumatic/life events in their individual biographies; as well as the growing recognition of the (previously unacknowledged) emotional needs of people with learning disabilities; 3) Experiential data elicited from the research participants have contributed to the (proposed) development of a theoretical model regarding psycho-social subjectivity within the field of Learning Disabilities; 4) Some findings from this project resonate with findings from previous studies; and have potential implications for policy makers, service providers and service users.

Background: As a result of the changes in support for adults with Intellectual Disabilities (ID) and the increasing emphasis on independent living within the community, individuals commonly live in their own homes with support provided by voluntary or private services. As a result, support staff play a huge role in the lives of adults with ID and are often the mediators of interventions aimed at reducing distress or the occurrence of challenging behaviour. Issues relating to the well-being of support staff and how they manage behaviours that challenge services are central to the quality of the lives of adults with ID. Method: A systematic review was carried out regarding interventions aimed at reducing stress felt by staff supporting adults with ID, with the aim of informing the clinical practice of psychologists that work with such staff groups. An empirical study employing the qualitative methodology of grounded theory was also conducted to explore the experiences of staff working with clinical psychologists outside of their organisation in the development of support guidelines aimed at reducing challenging behaviour. Results: Findings from the Systematic Review highlighted the lack of high quality intervention studies aimed at reducing stress in staff. Some tentative support was found for interventions based on Acceptance and Commitment Therapy and those taking a more practical problem-solving approach. The empirical study resulted in a tentative model within which the role of expectations was highlighted as key to staff’s experiences of working with professionals. Conclusion: Further research is required in order to identify the most effective ways to reduce stress experienced by staff working with adults with ID. The constructed theoretical model suggests ways in which psychologists can understand the experience of staff and has implications for their practice.

This study investigates the interaction between adults with learning disabilities and their care staff. Many people with severe learning disabilities have little or no speech; for these individuals, augmentative and alternative communication (AAC) may enhance their communication. However, AAC non-use is a widely reported phenomenon. The study explores power and communicative competence within such interaction, as possible factors in AAC non-use. An ethnographic approach was adopted; data collection was carried out in five community homes, focusing on four residents. Field notes were accompanied by video and audio recordings of natural interaction between participants. Aspects of Critical Discourse Analysis were applied to the data within the themes of turn taking, topic control, exclusion from conversation, activity exchanges, test questions and politeness; the theme of AAC was also critically scrutinized. Findings regarding interaction between residents and staff were set in the context of the institution and of wider society. Substantial asymmetries in both communicative competence and power were evident. Staff tended to constrain interaction such that immediate participation of residents was facilitated; however, in the longer term, AAC use is likely to be thereby inhibited. Further application of critical approaches to AAC research is warranted.

Background and Aim: The spiritual lives of people with ID has been under researched (Swinton, 2002; Turner et al., 2004) and as yet, no research has been carried out comparing faith-based and non-faith-based services for people with ID. This research explores and compares a faith-based care organisation with a non-faith based care organisation with the aim of investigating the significance of spiritual/religious based principles as modes of care to the quality of life of individuals, acknowledging that non-faith based care providers may provide ‘a spiritual/religious environment’, explicitly or non-explicitly. Method: A mixed-method design using both qualitative and quantitative methods was utilised. Six months were spent volunteering within each community in order to engage in participant observation of both care organisations. Quantitative methods included the Quality of Life Questionnaire; Self-esteem Scale and the Social Network Guide in addition to semi-structured interview schedules. Results: People with ID were found to enjoy spiritual/religious based activities, with spirituality being an important aspect of their quality of life. Staff from the non-faith based service provided religious spiritual care mainly through church attendance, whilst staff from the faith-based service provided both religious and non-religious spiritual care. Staff from both care services reported that practical implementation of spiritual/ religious care tended to be overridden by legalistic administrative tasks, communication issues and staff availability. Conclusion: There is a need for ID services to not only acknowledge but also facilitate spirituality in the lives of people with ID.