This thesis focuses on subjectively valued outcomes and aspirations for young adults with autism spectrum disorders (ASD). Part 1 reviews research literature examining adulthood outcomes for people with ASD. The review highlights the on-going needs of adults with ASD, who are commonly reported to have low levels of independence, high rates of unemployment and high levels of social isolation. None of the reviewed studies considered the young adults’ own perspectives on their current circumstances or future in a meaningful way. Part 2 reports a qualitative study using framework analysis to explore the outcomes and aspirations of young adults with ASD and their parents. Semi-structured interviews highlighted families’ varied outcomes and aspirations, beyond the stereotyped outcomes often represented in the literature. A framework for understanding and assessing outcomes is proposed, which may be developed into a tool for clinicians and other professionals working to support adults with ASD to meet their own personally valued goals. Part 3 discusses some of the challenges of using qualitative methodology with people with ASD, and considers the implications of the findings for service provision. Similarities between working with typically developing young adults and young adults with ASD are considered, and the barriers in achieving personally valued outcomes for adults with ASD are highlighted. These include assumptions made by others based on a limited, stereotyped understanding of ASD which may lead to young adults’ own valued goals being overlooked, and idiosyncratic preferences that may place people with ASD at risk of being coerced into inappropriate or uncomfortable activities. The importance of focusing on individuals’ own valued outcomes is emphasised.

This thesis is focused on the relationship between discourse, power/knowledge, policy, institutions, and people. Utilising the theoretical framework of critical discourse analysis (CDA) I examine these phenomena through the contested and controversial lens of 'personality disorder'; a psychiatric diagnosis used to categorise people assessed to exhibit impairments of the 'self and dysfunctions in 'interpersonal functioning'. Through an analysis of UK Government policy documents I show how since the turn of the 21 st century 'personality disorder' has become a signature of modern British governance. Influencing this development I show is risk-centric penal policies, recovery oriented mental health practice and the increasing convergence between the institutions of Health and Justice. This analysis reveals 'personality disorder' to be a diagnostic technology through which questions of modern forms of social regulation can be probed. Drawing on semi-structured interview data and documentary data I consider how 'personality disorder' policy developments, which have occurred across the UK, have been experienced locally in Northern Ireland. In so doing I examine how 'personality disorder' is related to other 21 st century shifts in social regulation, including legislative developments and prison health care reforms. I question what these broad changes in modern forms of governance mean both conceptually and practically for people diagnosed with a 'personality disorder.' In this way this thesis draws links between 'personality disorder' as a tool of social control (used to manage people who disrupt the moral order) as well as a technology of the self (used as a form of self-management).

Background: Population ageing is happening fast in low and middle income countries where there is an urgent need to act in order to attend the needs of this growing population. Late-life depression is one of the most important causes of disability in this age group. Evidence on the epidemiology of late-life depression comes essentially from studies carried out in Europe, North America and Asia. There is a need to understand better the frequency and the correlates of depression in this part of the world. Methods: A one-phase cross-sectional survey involving over 17,000 participants aged 65 years and over living in urban and rural catchment areas in 13 sites from 9 countries (Cuba, Dominican Republic, Puerto Rico, Mexico, Venezuela, Peru, China, India and Nigeria). Depression was determined according to ICD-10 depressive episode; DSM-IV major depression; GMS-AGECAT stage 1 depression and EUE.O-D criteria. Results: Depression prevalence varied according to diagnostic criteria. The lowest prevalence was observed for DSM-IV major depression (females from 0% to 10.9%; men from 0% to 11.3%) and ICD-10 depressive episode (females from 0% to 16.2%; men from 0% to 15.9%). The most important correlates of ICD-10 depressive episode were: low level of education, less wealth, food insecurity, not being currently married, infrequent or no contact with friends, and with all chronic health conditions and impairment studied. Compositional variables explained little of the variation in the prevalence of depression between sites. The EURO-D scale was validated against ICD-10 depressive episode and DSM-IV major depression. Sub-syndromal depression, defined as those scoring above the EURO-D cut point but not meeting ICD-10 criteria, was strongly associated severe disability. Effects of 10/66 dementia, stroke and physical impairment on depression were mainly mediated by disability and to a lesser degree by dependence. Conclusions: The 10/66 DRG has been able to carry out the first large community-based prevalence study on late-life depression in LMIC, the findings being of interest for each country in particular and for mental health knowledge in general. Contextual factors such as the influence of cultures, social and income inequalities, and policies for the social protection of older people may explain the residual variance at site level. The high proportion of depression cases with a first onset late in life is a concern given the probable increased risk of developing future cognitive disorders. Rapid population ageing in LMIC presents a major challenge to health care policy-makers. Within this, attention will need to be given to significant prevalence of late-life depression, comorbid with, and complicating chronic physical health conditions, and with a chronic, relapsing and generally poor prognosis.

Background: People presenting to hospital following an episode of self-harm have an estimated risk of suicide 50 times that of the general population. Providing effective clinical care during this period is therefore critical to prevent further self-harming behaviour and subsequent death by suicide. A number of interventions are commonly implemented when treating these patients, such as psychosocial assessment, but the evidence supporting their effectiveness is largely based on expert opinion. Observational analyses evaluating the impact of these interventions have produced mixed results and are likely to be limited by the effects of confounding by indication. Aims: To estimate the association of routine elements of self-harm patient care with risk of repeat self-harm and suicide. These aspects of care will include admission to a hospital bed, psychosocial assessment, and referral to outpatient care. Methods: Meta-regression was used in a systematic review to investigate whether heterogeneity in study estimates of the risk of repeat self-harm and suicide were explained by variation in the prevalence of different treatments. As routine aspects of self-harm patient care are commonly reserved for patients at increased risk of poor outcomes, the ability of traditional epidemiological approaches to assess their effectiveness is limited. Instrumental variable methods were implemented to overcome these problems of confounding by indication which are often encountered when assessing treatment effects in observational data. The different instruments tested included those based on temporal/seasonal variation in treatment and those based on variation in treatment across institutions or preference based instruments. These potential instruments were implemented using large datasets from prospective registries (Bristol Self-harm Surveillance Register, n=2676; Manchester Self-harm project, n=15,113; National Registry of Deliberate Self-harm, Ireland, n=43,595). Results: Pooled meta-analysis of available (n=177) study estimates suggested that within one year of an initial presentation 16.3% (95% Cl 15.1 % to 17.7% ) of self-harm patients will have had a repeat self-harm episode and 1.6% (95% Cl 1.2% to 2.1 %) will have died by suicide. Study estimates of these outcomes were not strongly related to reported levels of clinical care. In a subgroup analysis, studies reporting higher levels of medical admission had lower estimates of suicide within one year (change in mean odds: -24.0%, 95% Cl -39.9% to -3.8%, p=0.034). Of the various instruments investigated, time of day of hospital presentation was most robustly associated with the likelihood of treatment. In contrast to conventional ordinary least squares regression, instrumental variable analysis suggested psychosocial assessment reduced the risk of repeat self-harm (Risk difference (RD) -0.18,95% Cl -0.32 to -0.03, p=0.017), but the possibility of residual confounding by indication, especial through the effects of alcohol use, could not be ruled out. A preference based instrument utilising between hospital variations in admission rates was used to investigate the effect of medical and psychiatric inpatient admission on risk of repeat self-harm. Medical admission was found to have little impact on risk of repeat self-harm using this instrument (RD -0.02, 95% Cl -0.04 to 0.01, p=0.153). Psychiatric inpatient admission was associated with an increased risk of repeat self-harm (RD 0.12, 95% Cl 0.05 to 0.19, p=0.00l). Conclusions: The findings from this thesis add to a converging body of evidence of the effectiveness of psychosocial assessment in reducing repeat self-harm. These data support NICE guidelines recommending such assessments for all self-harm patients. The lack of evidence describing a therapeutic benefit of medical admission justifies the policy shift away from an emphasis on this intervention. Psychiatric inpatient admission may be associated with poor outcomes for a small subgroup of patients but this finding needs further investigation owing to the considerable effects of confounding by indication associated with this intervention.

Background: Family carers of people with dementia report high levels of anxiety and depression. More emotion-focused and less dysfunctional coping appear protective against symptoms in observational studies, but no randomised controlled trial (RCT) has investigated emotion-focused coping as a mechanism of effective therapy. Method: We recruited 260 family carers of people with dementia (referred to services in past year) into a pragmatic RCT of 8-sessions manualised, individual-based coping skills intervention versus treatment-as-usual (TAU). Blinded raters measured carers’ psychological morbidity (Hospital Anxiety and Depression Scale, HADS-T) and coping (Brief COPE: emotion-focused, problem-focused, dysfunctional subscales) at 4 and 8 months. My hypothesis that increased emotion-focused coping mediated treatment effects in reducing symptoms was tested using regression. As baseline symptoms moderated treatment effects on coping, post-hoc subgroup efficacy analyses were performed in carers with different baseline morbidity levels. Finally moderated mediation was tested using regression models. Results: Emotion-focused coping did not mediate treatment effects in reducing psychological symptoms in the whole sample. It appeared to mediate such effects only in psychological morbidity cases (baseline HADS-T 16+). Increased emotion-focused coping over 4 months predicted reduced symptoms at 8 months regardless of treatment status (b = -0.24, p = 0.005). Intervention had no overall effects on coping, but more severe cases (HADS-T 20+) increased emotion-focused coping (b = 4.57 [95% CI: 1.83, 7.30]), and maintained dysfunctional coping while TAU decreased (b = 0.14 [95% CI: 0.02, 0.26]). Non-cases (HADS-T <8) in TAU increased dysfunctional coping versus intervention (b = -0.09 [95% CI: -0.17, -0.003], log). Conclusions: Emotion-focused coping appeared to mediate treatment effects on psychological morbidity only in carers with high baseline symptoms. The most distressed increased helpful coping strategies and improved; the least distressed maintained low use of unhelpful strategies and remained well. Carers found different ways to benefit from standardised therapy.

Informed by the work of Gilles Deleuze and the ‘new materialisms’, the thesis is a post-representational, post-human response to contemporary conceptualisations and practices associated with 'anorexia nervosa'. The thesis puts these ideas to work through a mobile, or connective, ethnographic methodology which blends life on-line and off-line, without giving priority to one or the other. By holding in paradoxical tension both anorexia as an “aspirational lifestyle choice” (as it is often conceived in pro anorexic spaces on-line) and as a “biologically based serious mental illness” (as it is conceived through medical and psychiatric sense off-line), the thesis disrupts orthodox notions of what actual ‘anorexia nervosa’ is, and who actual ‘anorexics’ are. By ‘promiscuously’ engaging with texts which consider choice, determinism and materiality in ways which are rarely put to work in more traditionally bounded ‘disordered eating’ research, the thesis attempts to destroy ‘anorexia’ as a dogmatic image of thought and provide an alternative to individualised, cognised, spatio-temporalised representations. As one of the few sustained works which engages with the concept of ‘wannarexia’, the thesis attempts to produce an account which takes seriously the enchanting intra-action of entities and matter. More specifically it reconsiders interpellation in terms of captivating, expansive, yet unspecific promises which are produced and ignite desire. By engaging with the possibilities of what it is to eat and to speak, the thesis cleaves a space in which to consider the actual and the virtual of consuming-producing relationships. By drawing attention to non-human actants, the materiality of language and the abstractness of matter, the thesis attempts to provide a robust yet empirically transcendental account of a difficult relationship to feeding the body.

This qualitative investigation set out to analyse the impact of ‘Valuing People: A New Strategy for Learning Disability for the 21st Century’ (DH, 2001) on the lives of people with profound intellectual and multiple impairments (PIMD) and their family carers. Data was drawn from three distinct sources. The investigation began with a critical discourse analysis of Valuing People (VP). The findings informed the development of a semi-structured interview schedule for use with family carers caring for an adult with PIMD. It was deemed important to the study to include an individual with PIMD in as meaningful manner as possible. Therefore, following careful ethical deliberations, filmed excerpts of a woman with PIMD engaged in aspects of her daily routine, representing the main themes of VP, were used to elicit focus group discussions with paid care workers in different parts of London. The findings from the different data sources were triangulated, highlighting how a focus on a social model of disability in VP excluded those with PIMD. This neglect was confirmed and elaborated by the family carers and also the paid care workers. The findings further highlighted deficiencies in the volume and nature of provision of appropriately skilled staff, the availability of specialist services and residential respite for families. There was also a general feeling that things had not improved and much concern about the future. The film elicitations demonstrated the use of VP language among care workers but with little understanding of the concepts of rights, independence, choice and inclusion. By situating this hermeneutic exploration within a critical approach, the main findings have demonstrated the manner in which people with PIMD are marginalised within the policy, rather than having their differences recognized and ultimately their needs met.

Although there is a growing literature on the impact of aphasia on quality of life (QoL), this has focused on western Christian rather than Arabic cultures. While a few QoL studies have been conducted in Arabic countries, employing translated, culturally unadapted assessment tools, none have considered people with aphasia (PWA). Given the cultural and religious context, this gap needs to be redressed and so this study explored the factors affecting QoL for Saudi PWA, developed a tool to assess QoL, and explored other predictors affecting it. A three-stage qualitative and quantitative approach was used. First, a QoL questionnaire was developed by reviewing existing measures of QoL for aphasia in the light of cross-cultural adaptation, and surveying opinions on QoL and aphasia. Thematic analysis was then employed to produce a questionnaire, which was piloted and then revised. Second, another pilot test was implemented and its properties were examined by factor analysis, producing a shorter version. Third, this version was also piloted and its psychometric properties, accessibility and acceptability were examined. Potential predictors of QoL for demographic and health-related factors for Saudi PWA were then measured. After the review, three main measures were used to develop the questions. Thematic analysis resulted in a developed scale containing 58 items, covering areas such as physical and daily life activities, and communication. This scale was valid and reliable (r 0.992; α=0.896). For the potential predictors, it was found that QoL became worse as factors such as age and severity of aphasia increased. However, gender, post-onset time and employment variables seemed to have no significant effect. The QoL of Saudi PWA centred on mobility, communication, and social participation. Contrary to predictions, religion did not affect QoL despite its importance in Saudi culture, so further research could be conducted on the questionnaire’s psychometric properties, and its clinical implications.

Overview: This thesis looks at the role of social relationships in the lives of people who have experienced a traumatic event. Lack of social support has consistently been found to be associated with posttraumatic stress disorder (PTSD) and the literature review examines the nature of the relationship by focusing on studies that have used longitudinal designs. The empirical paper explores social support provided by a partner for a specific trauma, namely traumatic childbirth; the qualitative study investigates couples' experiences of the support process within their relationships. Finally, the critical appraisal reflects on the research process and is intended to be a useful resource for other researchers investigating partner support and / or PTSD following childbirth.

a) The research carried out: eight different samples of citizens of Bosnia and Herzegovina were assessed in 1998 and 1999, two to four years after the end of the 1992-5 war, covering a wide range of variables including traumatic and stressful experiences and various measures of psychosocial adaptation including PTSD. b) Main results and conclusion: the results were published in nine papers which are described in this Context Statement, and which are also included as Appendices. Taken together, the specific (and sometimes tragic) features of the conflict in B&H, and some strengths of the research design, enabled the papers to make a significant contribution to three key psychological themes. The first theme was PTSD concept and measurement. The psychometric performance of measures of PTSD in B&H were found to be similar to other published results, suggesting that the construct is as valid for the B&H population as for the comparison populations on which the instrument was developed. The case is also made for dropping Criterion A from the DSM PTSD diagnosis altogether, on the grounds of overwhelming practical and conceptual problems with assessing it using populations with multiple stressors. The second theme was epidemiology and aetiology of PTSD and other symptom groups. Quite apart from PTSD, the war had a very significant impact on general mental health across the population. Current PTSD prevalences in the non-treatment samples ranged from 11% amongst returned refugees to 36% amongst internally displaced persons (IDPs) in camps, which are in line with the literature. Beyond PTSD, impact was concentrated in particularly high levels of somatisation, paranoid ideation, and aggression. PTSD prevalences amongst returned refugees are clearly lower than those of their peers who stayed in host countries, and much lower than all known reports in refugee samples abroad. Analysis of persons in treatment suggests that those who seek treatment for PTSD (as opposed to other medical problems) do have high levels of PTSD symptoms specifically, but not necessarily because they experienced a larger number of traumatic events. The third theme looked beyond psychopathology. Findings suggest that the concept of post-traumatic growth can be validly extended to this population, but levels were considerably lower than reported in most other studies on other kinds of traumatic event. Finally PTSD and the PTSD diagnosis are discussed in a broader social context and it is concluded that while the war had many different kinds of consequences beyond the purely clinical, this should not divert attention from the fact that individual, clinically-relevant suffering was prevalent in the population at levels warranting urgent attention from public health care.