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This portfolio thesis is comprised of three parts. It explores the implementation of positive behaviour support (PBS) to support people with intellectual disabilities and behaviours that challenge. Part one contains the systematic literature review that aimed to explore the effects of implementing PBS in services that support people with intellectual disabilities and behaviours that challenge. Fourteen papers were analysed using narrative synthesis and five themes were constructed, including: 'reduction of behaviours that challenge', 'reduction of the use of psychotropic medication', 'improvements in quality of life', 'changes in the extent of support required' and 'elements of positive behaviour support which assisted changed in outcomes post-implementation'. The quality of the literature included is assessed, and the implications for clinical practice and future research are discussed. Part two contains the empirical paper that aimed to explore the experiences of health care assistants who used PBS in an inpatient service to support people with intellectual disabilities and behaviours that challenge. Six participants shared their experiences in semi-structured interviews. The transcripts were analysed using interpretative phenomenological analysis and three superordinate themes were constructed: 'understanding behaviours that challenge', 'using PBS as a HCA' and 'relationships'. The clinical implications and future research suggestions are discussed. Part three contains the appendices that accompany both the systematic literature review and the empirical paper. A reflective statement on the researcher's experiences of the research and an epistemological statement on the researcher's assumptions are included.

Background: The importance of recognising the older person with an intellectual disability as a unique and valued citizen, living a connected and fulfilling life, is one of the foundations for this study. The principles of person-centred practice are strongly connected to intellectual disability services but are typically associated with person-centred planning. Key principles of person-centredness include choice, relationships and staff engagement. Policy changes in Ireland since 2011 has shifted the focus of care from large residential settings to living in a home environment within a community setting, created in partnership with staff. Previous research within intellectual disabilities services has focused on person-centred planning as a process. This study used an evidence-based person-centred framework as the theoretical lens to explore the concept of person-centeredness in practice. Aim and objectives: This study explored how person-centredness is perceived and experienced within residential services. Older people with intellectual disabilities, their families and staff were research participants in the study. The objectives were: 1. To examine staff practice and understanding of person-centredness within their day-to-day work. 2. To gain insight from older people with intellectual disabilities and their family members on person-centredness. 3. To synthesise the experiences of older people and family members with those of staff to expand the understanding of person-centred practice for older people with intellectual disabilities. Methodology: A two-phase sequential mixed-methods approach was adopted for this research study. In phase one, a quantitative survey, the Person-Centred Practice Inventory-Staff, instrument was distributed to registered nurses and healthcare assistants working in residential services in one region of the Republic of Ireland. Phase two included 15 in-depth interviews with older people with intellectual disabilities and six in-depth interviews with their family members. Two focus groups and three semi-structured interviews were conducted with staff working in residential services. Findings: The data from both quantitative and qualitative phases were analysed and integrated at the interpretative phase of the study. The 229 completed Person-Centred Practice Inventory-Staff questionnaires were analysed and the data revealed that staff reported they were person-centred in their practice and delivered person-centred care. In the qualitative data analysis with older people and the family members, they shared that they valued this time in their lives for comfort and enjoyment. They spoke of the importance of belonging and connection to home, family and community. The focus groups and interview data with staff revealed that they felt services were not always structured to realise person-centeredness in practice, despite this they reported a commitment to their role. The concept of 'othering' emerged from the data analysis finding that the attribution of negative characteristics impacted on how people with intellectual disabilities are perceived within communities and services. Implications for practice: It should be a central aim within intellectual disability services to establish participatory processes in practice to create the foundation for the development of an in-depth understanding and implementation of person-centeredness. Future planning in collaboration with older people and their families is important to promote active ageing and belonging to their communities. The right to choose where to live and with whom should be recognised. The impact of 'othering' of people with intellectual disabilities needs to be meaningfully discussed in partnership with people with intellectual disabilities, their families and service providers at operational and strategic levels.

Individuals with intellectual disabilities are eligible for out of work and disability benefits within the United Kingdom (UK) welfare system. Research suggests that the welfare system causes psychological harm (Arie, 2018), which has been linked to work capability assessments (WCA; Barr et al., 2016). Existing studies on people who claim benefits (e.g. Allen et al., 2016) have not focussed on the experiences of people with intellectual disabilities. The aim of this project is to explore the experiences of people with intellectual disabilities who undergo WCA and provide insight into potential interventions to reduce any psychological distress related to claiming benefits. Stigma is experienced by people who claim benefits (Baumberg et al., 2016) and people with intellectual disabilities (Scior, 2016). Stigma has been linked to psychological distress in people with intellectual disabilities (Ali et al., 2015) and people who claim benefits (Thompson, in press). Self-stigma may be particularly harmful (Boyd et al., 2014). It has been suggested that self-compassion may act as a buffer between self-stigma and distress (Wong et al., 2019). Therefore, Chapter One of the thesis comprises a systematic review of literature examining the relationship between self-stigma and self-compassion. The synthesis of twenty quantitative papers demonstrated consistent, inverse associations between self-compassion and self-stigma scores, suggesting that self-compassion could have potential benefits for reducing the impact of self-stigma. Chapter Two is an empirical paper exploring the lived experiences of eight people with intellectual disabilities in the UK, who were interviewed about their experiences of being assessed for welfare eligibility. Interpretative phenomenological analysis (IPA) suggested five closely related themes; living in fear; marginalisation; relationship with the assessor; others as a safe base; and finding value. The findings captured the distressing nature of the benefit assessment process for people with intellectual disabilities. Although this was an exploratory study, findings suggest that future research and interventions might be usefully targeted towards improving the experience of the assessment process, as well as clinically treating individual's responses to the assessment process. Recommendations for change across individual, systemic and policy levels are included.

This thesis offers a contribution to the research on staff who support people with intellectual disabilities. The first section is a systematic review of studies which have measured the psychological construct of Emotional Intelligence (EI), of staff in services for people with intellectual disabilities. Six academic databases were searched and 15 empirical studies were identified for inclusion. The results gave an indication that staff EI may relate to aspects of their wellbeing, but the heterogeneity and variable quality across studies limited the extent to which meaningful conclusions could be drawn. There was minimal evidence on the effects of training which aims to improve staff EI, and a notable lack of investigation into how staff EI relates to service-user outcomes. The issues which future research needs to address, in order to determine if EI is a useful target for service development, are discussed. The second section describes a qualitative research project, which explored the experiences of working relationships for staff who provide direct support to adults with intellectual disabilities. Six support workers, from supported living services in England, participated in semi-structured interviews, about their relationships with service-users and colleagues. An interpretative henomenological analysis was conducted, from which six interconnected themes emerged: (A) The essence of good relationships; (B) A trusting relationship as the vehicle for meeting service-users' needs; (C) Belonging to the support team; (D) The organisational context of relationships; (E) The social context of relationships; (F) "A fine balancing act". The paper discusses how these findings build on existing research on the wellbeing of direct care staff, along with potential implications for service providers. The third section is a critical appraisal which considers links between the literature review and research paper findings, discusses some future research directions which arise, and explores personal reflections on conducting the research project.

People with intellectual disabilities are at greater risk of experiencing trauma than the general population, yet models such as trauma-informed care have not consistently reached intellectual disability services. Professional carers can play an important role in the lives of service users and are well placed to provide meaningful person-centred support with those who have experienced trauma. However, little is known about carers' perceptions and experiences of this work. This study aims to explore professional carers' experiences of supporting individuals with an intellectual disability who have experienced trauma, considering any strengths and challenges of this work. Seven professional (paid) carers completed semi-structured interviews which were analysed using Interpretative Phenomenological Analysis (IPA). Three group experiential themes were identified: Navigating inner conflict and uncertainty; A give and take dynamic; and Seeking support. Participants highlighted the desire and need for more training regarding trauma and the importance of workplace support to help with the tensions and uncertainty in their practice and the difficult emotional impact of this work.

Background: A systematic review was conducted to examine whether combined Applied Behaviour Analysis (ABA) and Mindfulness-Based Interventions (MBIs) are effective in increasing the psychological wellbeing and quality of life of carers of people with intellectual and developmental disabilities, and to determine whether combined interventions achieve more positive results than interventions delivered alone. Methods: Using the Ovid search software, systematic searches of Ovid MEDLINE, APA PsychInfo, and Embase were conducted in November 2020. The review included studies that combined ABA and MBIs in interventions with both paid and unpaid carers, working and living in any setting, and caring for people of any ages. Results: Thirteen studies involving 322 paid care staff and 195 parents of people with intellectual and developmental disabilities were included. Seven studies examined staff caring for adults, while the remaining six studies focussed on parents caring for their children (under 18 years old). Studies varied considerably in terms of design, sample size, diagnosis, and methodological quality. Within the context of these limitations, results tentatively suggest that combined ABA and MBI interventions are effective in decreasing carer stress and challenging behaviour, and that they can be more cost-effective than ABA interventions delivered alone. Conclusion: While there is emerging evidence that combined ABA and MBI interventions are beneficial to carer wellbeing, it is not possible to draw firm conclusions on the basis of the existing literature. Future studies should aim at evaluating the effectiveness of combined interventions further using high quality randomized controlled trials.

Background: Mental health problems of people with intellectual disabilities can negatively affect the willingness of healthcare professionals to work with them and their family carers to support them. There has as yet not been any research to understand the experiences of different stakeholders providing care and treatment to this population in Singapore. Aims: This thesis used a qualitative approach to explore 1) the experiences of mental health professionals working with this population, 2) the experiences of family carers and service users about the specialist mental health service and their mental health experiences in Singapore. Methods: Five groups were identified. Individual interviews or focus group discussions were conducted with mainstream and specialist mental health professionals; family carers of people with intellectual disabilities; inpatient and outpatient service users. Thematic and interpretative phenomenological analysis were used to analyse the participants' quotes. Results: Mainstream mental health professionals reported feelings of uncertainty when working with people with intellectual disabilities and required additional training and knowledge to increase their confidence managing the mental health needs of this population. Specialist mental health professionals reported initial fears when starting out and became more confident with increased experience over time. They were more likely to interact with people with intellectual disabilities and involved their family carers during treatment to improve their health outcomes. Family carers found it challenging to deal with the mental health and behaviour problems of their relatives and were satisfied with the services provided by specialist mental health professionals. Outpatient service users had more opportunities to participate in the community and received more family support than inpatient service users. Both groups of service users desired an increased choice and autonomy over their lives, however their views were neglected as mental health professionals often took into consideration the views of their family carers during the treatment process. Conclusions: The findings of the current research provide an increased understanding of the lived experiences of different stakeholders and how the culture of Singapore has an impact on the provision of mental health services and outcomes of people with intellectual disabilities. Recommendations are made for service delivery and for improving the clinical practice of healthcare professionals working with people with intellectual disabilities and mental health problems.

Section A: This narrative review focuses on exploring what factors are important for successful physical activity interventions for people with intellectual disabilities with the aim to improve their physical and mental health. The analysis of eleven papers suggests that social cognitive theory-based interventions which combine personal, contextual and behavioural elements over a sustained period of time may be important factors for successful physical activity interventions for people with mild-to-severe intellectual disabilities. Section B: This section aimed to explore a more holistic conceptualisation of people with intellectual disabilities as an alternative to an IQ-centric approach, to include physical health, which is usually compromised in PWID. Starting from a previous pilot study which developed an International Classification of Functioning, Disability and Health (ICF)-based questionnaire, this project developed the questionnaire further and tested its psychometric properties. The project suggests that the questionnaire has good discriminatory abilities and meets all the psychometric standards tested, except for internal consistency, which required more data for a statistically robust analysis. The questionnaire has the potential to be used to facilitate classification in ID sport as well as the clinical sector, supporting clinicians with a tool that can aid a more holistic understanding of clients with ID.

Aims To develop the Responding to Intellectual Disability Stigma (RIDS) tool in consultation with people with intellectual disabilities. To investigate its feasibility, including online delivery, as well as initial psychometric properties for future development in research and clinical settings. Methods The RIDS was created using a picture-story task, a scaffolding technique well-established in intellectual disability research. This is the first time this method has been used to investigate stigma responses. Participants were adults with mild to moderate intellectual disabilities, recruited via social media, third party, and voluntary organisations. The study was completed online via videocall due to restrictions on face-to-face research as a result of the COVID-19 pandemic. Content analysis was used to categorise responses to stigma, and examine the frequency of typologies within the data set, which were preliminarily examined for their association with wellbeing and self-esteem. Results Results indicate that the RIDS is a feasible method of eliciting responses to stigma in people with intellectual disabilities. The RIDS was well understood, produced good inter-rater reliability, and identified important relationships between certain emotions, appraisals, behaviours, and motivations within stigmatizing situations. Responses were similar to those described in the wider stigma literature. Results on the RIDS were not associated with measures of wellbeing and self-esteem. Conclusions Initial results suggest the RIDS is a promising measure which warrants further investigation and validation. The relationship between stigma, wellbeing, and self-esteem paints a complex picture and existing theoretical frameworks were somewhat supported by this study. The RIDS has the potential to be useful in both clinical and research settings.

Section A is a narrative synthesis of the empirical literature of professionals' knowledge of the MCA and how they apply it when working with people with intellectual disabilities (ID). Eleven papers were identified for inclusion in this review. Four themes, with subthemes, were identified: 'processes involved', 'working with complexity', 'knowledge gaps and variability' and 'assessor needs'. Methodological strengths and weaknesses are also considered. Findings are discussed in relation to clinical implications and recommendations for future research are outlined. Section B is an empirical study using Interpretative Phenomenological Analysis to explore the experiences of clinicians using the MCA (2005) with people with ID to assess capacity to consent to sex. Eight clinicians, who had completed between 2 and 40-50 (mode=2) MCA assessments regarding consent to sex. Three superordinate themes, with subthemes, are outlined and discussed in relation to the existing literature. Limitations, clinical implications and areas of future research are considered.

Background Compassion-Focused Therapy (CFT) may provide a useful intervention for individuals with cognitive impairments. However, psychological interventions for such people require careful adaptations. Method Multiple databases were searched for studies on CFT for people with intellectual disabilities, autism spectrum disorder, brain injuries or dementia. The quality of the studies' reporting of their interventions was evaluated. Frameworks were developed to review the adaptations employed and the CFT features included in the interventions. Results Seven studies on participants with intellectual disabilities, four on people with acquired brain injuries, and two on individuals with dementia were found. No studies explored CFT and autism spectrum disorder. The quality assessment indicated that studies could have benefited from increased detail in their accounts of their interventions, and highlighted a lack of methods for measuring and enhancing adherence to protocols. The reviews of therapy adaptations and CFT features showed that studies varied in the extent to which their interventions were adapted and the degree to which the main features of CFT were incorporated. Conclusions This review summarises the beginnings of an evidence base for CFT for people with cognitive impairments. It provides a centralised source of ideas for adapting CFT and points to avenues for future research.

Background: There are many factors which may impact on the self-concept of children with intellectual disabilities. With greater inclusion of children with intellectual disabilities into mainstream education, it is important to understand how these experiences impact on their self-perceptions. This review provides a narrative synthesis on the literature. Method: A search of relevant electronic databases was completed. Six studies met the inclusion criteria for this review. Each paper's method was rated for quality using the Johanne Briggs Institute quality appraisal tool. Results: Synthesis of the results highlighted mixed findings for global selfconcept and social self-concept scores among children with intellectual disabilities, and lower academic self-concept scores. Discussion: This review discussed limitations in the existing literature, and implications for education and national policies. Future studies should aim to address methodological weaknesses in order to clarify global and social selfperceptions within this population.

People with severe and profound intellectual disabilities are rarely given the opportunity to participate in research. This is despite the development of inclusive participatory practices. A lack of involvement in research can maintain the negative assumptions and biases that surround people with intellectual disabilities and overshadow aspects of their identities. Building on previous research, this project aimed to explore whether an adapted version of photovoice could be used as a methodology to explore the identities of people with severe and profound intellectual disabilities. Informed by Social Constructionist ideas, this project incorporated a qualitative multiple case study approach. Three participants, their families and carers were invited to participate in the project which combined methods of ethnography, photovoice and dyadic interviewing. The data collected from these multiple methods were analysed systematically using a Reflexive Thematic Analysis approach. The findings of this study illustrate the complex processes involved in exploring the multidimensional identities of people with severe and profound intellectual disabilities. Photovoice can offer a flexible and accessible methodology to including visual voices, although there are important facilitating factors that must be considered, not only when conducting research, but when providing support in day to day life.

Overweight is an on-going health challenge disproportionately experienced by people with an intellectual disability (ID). Emerging literature indicates that multi-component interventions are most effective at reducing obesity in this population. The systematic review in Chapter 2 supports this view and proposes a specific 'Component Guideline' to be utilised to structure future research. Mobile app technology has been developed to support weight management however, existing off-the-shelf weight management apps remain too complex for many people with an ID. This research is a pilot of 'The HealthyTaps Programme', an ID specific health promotion series and multi-component weight management programme utilising bespoke mobile app technology to support self-management. A series of focus groups explored the knowledge-base and lived experiences of adults with ID with regards to diet, exercise, and technology. The main findings were that research and practice would benefit from understanding the influence that internalisation of health promotion messages, effective external reinforcement systems, and positive feedback can have to support the adoption of healthier habits. Essential components in technology use for people with an ID were found to be ownership, education, support, regular access, and regular use. The findings informed the design of 'The HealthyTaps Programme'. The pilot study of 'The HealthyTaps Programme' with 28 adults with ID achieved mean weight losses of -3.9%. Thirty-two percent of participants lost over -5% of their body weight which is clinically significant, and which exceeds the NICE (2014a) guidelines for effective interventions for the general population. A replication study with 11 adults with ID, also reported in this thesis, achieved mean weight losses of -4.0%, and 27% of the participants with ≥ -5% weight loss, demonstrating reliability in the intervention effects. These are extremely promising initial results that warrant further exploration, ideally with a more robust design such as a randomised control trial of The HealthyTaps Programme.

This thesis explores staff's experiences of receiving facilitated formulation for their clinical work with people with intellectual disabilities. Chapter Two presents a systematic review of research exploring staff's experiences of receiving team formulation and systemic consultation (facilitated formulation) for their direct work with clients with intellectual disabilities. The review highlighted a lack of qualitative research into team formulation in this area, and no investigation of approaches that helped staff formulate relationships with their clients explicitly. This formed part of the rationale for the empirical paper (Chapter Three), which details a qualitative study on care staff's experiences of receiving contextual reformulation, a Cognitive Analytic (CAT) model of team formulation that includes formulating staff relationships with clients, in this case, people with intellectual disabilities who exhibit behaviours that challenge. Chapter Four, (Integration, Impact and Dissemination), integrates the findings from Chapters Two and Three, and discusses the study's implications and plans for dissemination.

Background: Intellectual disability stigma is widespread and has significant negative implications for individuals with intellectual disabilities. Stigma resistance is associated with positive outcomes across stigmatised groups of individuals, and is implicated as a target for interventions tackling stigma at the intrapersonal level. However, to date there have been no interventions that seek to directly manipulate stigma resistance in individuals with intellectual disabilities. Aims: The present study contributes to a multi-part feasibility and pilot study of a psychosocial intervention aimed at increasing the capacity of individuals with intellectual disabilities to manage and resist stigma. Specifically, it aimed to (1) examine the feasibility and acceptability of assessing longer-term outcomes of the intervention through (a) Qualitative interviews with group members, group facilitators and significant others four months from baseline and (b) standardised outcome measures completed by group members seven months from baseline; and (2) preliminarily assess the longer-term outcomes of the intervention. Method: The intervention consists of five manualised sessions delivered by facilitators of existing self-advocacy, social and educational groups for people with intellectual disabilities. Recruitment and retention rates were explored, and quantitative data assessing self-esteem, psychological distress, experienced discrimination and sense of social power were compared at baseline, intervention completion and follow-up. Qualitative interviews with group members, group facilitators and significant others were completed at follow-up and analysed using thematic analysis (Braun & Clarke, 2006). Results: Assessing the longer-term outcomes of the intervention through qualitative interviews with group members, facilitators and significant others four months from baseline and standardised outcome measures completed by group members seven months from baseline was both feasible and acceptable. No statistically significant changes in scores of self-esteem, psychological distress, experienced discrimination or sense of power were found between baseline and follow-up. However, increases in self-esteem and sense of power and decreases in psychological distress and experienced discrimination, all with small effect sizes, were found. Qualitative findings demonstrated long-term benefits of the intervention for group members, facilitators and significant others. Benefits to group members indicated increases in stigma resistance at the personal, peer and public levels. Conclusions: Preliminary findings of the long-term benefits of the intervention and feasibility and acceptability of the proposed methods of assessment of the outcomes indicate the appropriateness of a further controlled trial of the intervention. Recommendations for improving the feasibility and acceptability of assessing the longer-term outcomes of the intervention are made.

BACKGROUND: The Learn With Us (LWU) is a half-day film-based training programme developed by family carers of individuals with intellectual disabilities (ID) in partnership with Islington Social Services. It is delivered to ID services’ support workers and co-facilitated by a family carer and a service manager. It was designed to help improve partnership working and increase understanding between family carers and support workers. The primary aim of this research was to evaluate the outcomes of eight training sessions on empathy, conflict, and complex decision making skills. METHOD: The immediate and longer term impact of the training were evaluated using a mixed methods design. An empathy scale and situational judgment tests were administered at baseline (n= 50 and 68 respectively), post-training (n= 49 and 67 respectively) and three month follow-up (n= 17). The Interpersonal Conflict Scale was administered at baseline (n= 68) and follow-up (n= 17) only. In addition, qualitative interviews were conducted with nine participants to explore their views on the training and implications for future use. RESULTS: This study adopted a repeated measures design. Support workers’ empathy towards family carers increased after the training, but this change was not maintained in the subsample assessed at follow-up. Perceived conflict between family and formal carers increased between baseline and follow-up. Finally, participants’ judgements of the most appropriate ways to manage partnership working and decide on choice vs best interests of service-users, did not change post-training. Five overarching themes were identified from the interviews. CONCLUSIONS: This uncontrolled pilot suggests that the LWU programme may generate increased empathy and collaborative work between family and formal carers. This was confirmed by interviews which suggested that this programme was seen as both innovative and as having the potential to lead to change in everyday care practices.

People with intellectual disabilities are increasingly being diagnosed with cancer due, in part, to increases in life expectancy for this population. Despite the growing number of people with cancer and intellectual disabilities, the cancer-related experiences of people with intellectual disabilities are under-researched. Person-centred approaches to research are needed to better understand the needs and psychosocial outcomes of people with cancer and intellectual disabilities. This thesis aims to better understand the cancer-related experiences of people with intellectual disabilities, and the impact on the people who support them. The thesis comprises four related studies: (1) a systematic review of psychosocial experiences of cancer in people with intellectual disabilities; (2) a qualitative study of cancer experiences in people with intellectual disabilities using thematic analysis informed by grounded theory; (3) a survey of UK oncology nurses' attitudes and care perceptions towards people with intellectual disabilities; and (4) a feasibility study of an intervention to improve healthcare professionals' perceptions of communicating with people with cancer and intellectual disabilities. Five themes emerged from the ten papers included in the systematic review: delayed diagnosis; information, communication, and understanding; negative psychological consequences; negative physical consequences; and social support. Six of the ten papers included data from the same ethnographic study of 13 people, highlighting a paucity of empirical research regarding the psychosocial cancer experiences of people with intellectual disabilities. The qualitative study indicated that people with intellectual disabilities were often excluded from conversations about their diagnosis, treatment, and ongoing care, and expressed confusion and anxiety about their cancer. Attempts to protect them from distress inhibited communication, but where additional support was offered, participants engaged more meaningfully in their experience and this should, therefore, be encouraged. In the qualitative study, oncology nurses were reported to be important figures in the care of patients with intellectual disabilities. The survey of oncology nurses highlighted that caring for cancer patients with intellectual disabilities may intensify their already difficult role; however, previous experience may ameliorate negative consequences. This sample identified their need for training about communicating with people with intellectual disabilities. The first three studies informed the development of a novel, brief, online, video-based intervention for healthcare professionals working with people with intellectual disabilities and cancer. The feasibility trial of this intervention indicated that there were problems with recruitment, high attrition, and intervention adherence. These problems were, most likely due to participants finding the content and delivery method to be unacceptable. It is clear that the intervention is not feasible in its current format, and that further theoretical and modelling work is needed before the intervention is feasibility tested again ahead of a definitive trial. This body of work has demonstrated that people with intellectual disabilities and cancer face multiple barriers to accessing cancer care, including informative and understandable communication with healthcare professionals. With appropriate support, psychological and physical outcomes can be improved for people with intellectual disabilities and cancer, but caring for people with cancer and intellectual disabilities can be challenging for paid and informal carers, and oncology staff. Difficulties with communication are bi-directional, and improving communication might be an appropriate first step to improving cancer experiences for this population, but developing effective interventions presents numerous feasibility challenges.

Background: Transition to adulthood is recognised to be a difficult period for young people with intellectual disabilities, and there is evidence to suggest that outcomes across vocational and social domains may be worse for this population compared to the typically developing population. It is possible that the turbulence of the organisational transition to adulthood, including leaving school and entering adult services, combined with the social aspects of becoming an ‘adult’ may conspire to result in negative health outcomes during transition. Despite significant concern being attached to the transition period in both the scientific literature and governmental policy, there is little evidence on health outcomes during this period in the population with intellectual disabilities. Aims: (1) To investigate whether transition to adulthood affects health and wellbeing in young people with intellectual disabilities, and in what particular ways; (2) to investigate whether the impact of transition on health and wellbeing is similar or different for young people with intellectual disabilities compared to those without intellectual disabilities; (3) to investigate whether the impact of transition on health and wellbeing is similar or different for young people with profound and multiple intellectual disabilities, compared with those with mild to moderate intellectual disabilities; (4) to identify what supports are helpful for families undergoing transition. Method: A systematic review of the literature on health and wellbeing during transition to adulthood for young people with intellectual disabilities, and a mixed methods project, utilising both quantitative and qualitative methodologies. Secondary analysis of Scotland’s Census (2011) was conducted in order to compare health outcomes between the populations with and without intellectual disabilities undergoing transition. The Census data was then further analysed to compare health in young people with intellectual disabilities who were still in school (aged 13-18 years) with that of those who had transitioned from school (aged 19-24 years). Additionally, semi-structured interviews were conducted with young people with intellectual disabilities (n = 17) aged 16-27 years, and with parents of young people with intellectual disabilities (n = 23) aged 16-26 years, in order to uncover insights into the experience of transition from multiple perspectives. Additionally, an ethnographic study of a service for young adults with intellectual disabilities undergoing transition was completed. Interview transcripts and the ethnographic field diary were analysed using thematic analysis, deploying both emic and etic coding categories. Results: Across all of the health outcomes investigated through the Census (2011) analysis, those with intellectual disabilities fared worse compared to those without intellectual disabilities. Mental health was significantly worse in the population with intellectual disabilities who had left school compared to those who were still in school. The qualitative studies revealed transition to be an anxious time for young people with intellectual disabilities, with many experiencing significantly increased anxiety during the period prior to and following school exit. This phenomenon was attributed to a lack of post-school meaningful activity; inadequate organised support during the transition to adulthood; and complex issues associated with ‘growing up’ with intellectual disabilities. Additionally, parents raised concerns regarding their children’s post-school weight gain, which was also attributed to a lack of post-school daytime activity, contributing to a more sedentary lifestyle. Conclusions: Health in the population with intellectual disabilities undergoing transition to adulthood is poor, and significantly worse than in the typically developing population. Mental health especially may be negatively affected by the experience of transitioning to adulthood, and changes in lifestyle following school exit may result in weight gain leading to obesity and secondary health conditions. Improving support during transition to adulthood, as well as increasing the availability of post-school opportunities for meaningful activity, may help to combat these negative health and wellbeing phenomena. Future research should include a longitudinal study following a representative sample of young people with intellectual disabilities throughout the course of transition to adulthood in order to clarify the ways in which this important life period affects health and wellbeing.

The use of agricultural landscapes to create interventions to improve health and wellbeing (care farming) is increasingly being advocated as a viable alternative to more traditional forms of health and social care. Yet the views and experiences of people with intellectual disabilities (the UK care farm industry’s main service user) have rarely been sought. Given the current lack of evidence, this study aims to fill this gap through an in-depth exploration of the wellbeing effects of care farming for people with intellectual disabilities. Theoretically, this thesis is situated within the field(s) of social and health geography. Specifically, it draws together recent work on therapeutic landscapes, non-representational theory and disability geographies to build a conceptual framework, through which to explore the material, embodied, relational and inter-subjective elements that foreground people’s therapeutic landscape encounters. Using a range of qualitative methods of data collection (including photography and film) this research draws on empirical findings from seven ethnographic case studies. Three substantive chapters examine the experiences of people with intellectual disabilities engaged in care farming activities for health and wellbeing. The first describes participants’ embodied engagements with various features of the care farm environment and ways in which these served to facilitate or hinder the formation of a therapeutic landscape experience. The second explores the wider impact that these kinds of encounters had on the everyday lives of participants. The third chapter examines in more detail the place experiences described in the previous two chapters, and the extent to which these experiences may facilitate feelings of belonging (both at the care farm and within the wider community). This, I argue, is an important wellbeing outcome of care farming for people with intellectual disabilities. In drawing together the arguments presented throughout, I argue that this thesis contributes to the field of therapeutic landscapes by drawing attention to the transformative power of the therapeutic encounter, as well as the broader socio-spatial environments in which people live and ways in which these can limit that power. This thesis also contributes to disability scholarship by moving beyond purely discursive accounts of disability centred on meaning and identity, to consider actual visceral experience, as this relates to health and impairment.

The relationship between people with intellectual disabilities (PWID) and how they experience social inclusion is a somewhat complex phenomenon. Historically, PWID have been systematically excluded from society. Despite an unprecedented level of enactment of equality and rights based legislation over the last 25 years, a shift from the medical model of disability to the social model and the implementation of multiple disability sports inclusion initiatives, research has found that many PWID routinely experience social exclusion in Ireland. However, in stark contrast to this one disability specific sporting organisation, the Special Olympics (SO),make claim that they are transforming communities that are respectful and inclusive of PWID. It is therefore imperative that such assertions are further investigated, as some researchers have claimed that the images the SO use to portray PWID has only served to perpetuate their isolation and segregation from society (Storey 2009). The overall aim of this study was threefold. In the first instance it was to explore the impact of the images used by the SO to portray PWID has had on public attitudes towards this minority group. The second aim was to analyse public attitudes towards the Special Olympics and the position of its participants within local communities. The final aim of the study was to assess how a decade of legislative and social change in society's responses to disability has impacted on participants in this study. Focus groups were facilitated across the four provinces of Ireland with two specific age groups in order to explore public attitudes across two distinct generations. The findings from the focus groups were discussed with five carefully chosen topic experts so as to provide a deeper and richer insight into the themes arising from this research study. The findings revealed that while the SO are of significant importance to the everyday lives of PWID and PWID are more 'visible' in society, they fall considerably short in ensuring that this minority group are included in any 'meaningful' way in their communities. At the time of this study it was also observed that a decade of legislative and social change in society's responses to disability has had some positive but limited impact on focus group participants. Finally, of the 107 people who took part in the focus groups, only one claimed to have a friend with an intellectual disability. Thus, the overall results of this study indicate that while PWID are experiencing regular 'integration' into their communities' 'meaningful' inclusion continues to elude them.

Increasingly, society is acknowledging that people with intellectual disabilities (PWID) have sexual needs. This shift is reflected in international policy, with sexual expression acknowledged a basic human right for PWID. Staff that care for PWID have a responsibility to ensure this right is upheld. Though they generally report accepting views of PWID's sexual expression, PWID report that their sexual expression is restricted by care staff. A lack of service-level policy regarding PWID's sexual expression and how to support them in this, leaves care staff confused, and lacking confidence to make decisions about PWID's care. Clinical Psychologists work with care staff who experience these difficulties. Though pockets of good practice are emerging, there is no guidance on how to best approach this work. This research sought to utilise the good practice already occurring. We used the Delphi Method to develop a set of consensus-based good practice guidelines for Clinical Psychologists working with care staff around supporting PWID's sexual expression. We conducted the Delphi across three rounds, with a panel of 17 Clinical Psychologists experienced in helping care staff support sexual expression in PWID. In Round One, the primary researcher interviewed panel members about clinical experiences and they each suggested three potential good practice guidelines. We then compiled the Round Two survey, in which all 51 suggested guidelines could be rated in terms of importance and sent it to all panel members. We developed the Round Three survey using the responses to Round Two, personalised to include information on how the 51 guidelines had been rated by the individual panel member and the panel as a whole. The Round Three survey gave panel members the option to amend their responses. Consensus that a guideline was important or essential (set at ≥90% agreement, a priori), meant it was included in the final set. We supplemented endorsed guidelines with vignettes based on the practice described in the Round One interviews. The panel reached consensus that 12 guidelines were important or essential. These guidelines fell under four themes: 'Addressing staff attitudes', 'Addressing uncertainty about rights and responsibilities of PWID', 'Locating the problem, being part of the solution', and 'Supporting care staff to understand and reflect upon their role'. The limitations of this study include the homogenous sample and that the effectiveness of the practice Clinical Psychologists cited as evidence was not independently corroborated. This research provided insight into the important role Clinical Psychologists play in helping care staff support PWID's sexual expression. Direct work with care staff to clarify their understanding of PWID's rights, and to normalise and encourage reflection on the values care staff hold, were both considered central to the role. In addition, the panel suggested that Clinical Psychologists must put to use their unique professional skillset to share understanding about how organisational approaches are maintaining the gap between policy and practice, and what needs to be done about it.

Self-stigmatisation refers to the process by which members of a discriminated group endorse stigmatising stereotypes, thus increasing their sense of being different and accepting their lower quality of life as being justified. There is a significant body of research on how it can affect people with mental health problems, but our understanding of how and whether people with intellectual disabilities (ID) internalise the negative attitudes of others is limited. Part one is a literature review that considers the current evidence on how levels of self-stigma impact behaviour in individuals with severe and enduring mental health problems. The review suggests that higher levels of self-stigma are associated with behaviours that may be detrimental to recovery, such as poorer treatment adherence and reduced social contact. Part two presents the findings of a study that aimed to create a psychometrically-sound measure of self-stigma for use with people with ID, and to understand how self-stigma relates to other psychosocial factors, such as psychological distress and self-esteem, as well as sociodemographic characteristics. The self-stigma scale was not found to be psychometrically sound but a relationship was established between psychological distress and negative reaction to stigmatisation and gender, as well as between self-esteem and sense of power. Part three considers changes that could have been made to the methodology, both in terms of the development of the measure and its administration to increase its reliability.

Overview This study sought to further understanding within the research field of stigma resistance in people with intellectual disabilities (ID). Part 1 comprises a systematic literature review of the psychological and social impact of self-advocacy group membership on people with ID. Twelve studies were identified and evaluated. Several outcomes were reported, including empowerment, a sense of belonging and changes to self-identity. Implications of the findings of the review include a need for quantitative studies and co-construction of research agendas with self-advocates. Part 2 comprises a mixed methods uncontrolled feasibility study of a psychosocial intervention to increase the capacity of people with ID to manage and resist stigma. Sixty-eight participants from ten pre-existing groups of people with ID were recruited, along with their pre-existing facilitators. Findings indicated that all ten groups completed the intervention, with improvements in self-esteem and psychological distress. Qualitative feedback indicated factors affecting feasibility and suggested adaptations to inform the development of the intervention. Participants perceived improvements in stigma resistance and other areas. The recruitment rates and positive effects suggest it is worthwhile to proceed to a controlled trial of the intervention. This was a joint project together with another D.Clin.Psy trainee (Colman, 2018). Part 3 comprises a critical and reflective appraisal of the process of conducting the study outlined in Part 2. Issues considered include the author's professional values and theoretical influences, along with a consideration of the levels of context that influenced the qualitative data collection.

People with intellectual disabilities (PWID) are reported to have low self-esteem and to have experienced high rates of negative life events. The present study compared the frequency of negative relational life events and levels of shame, self-compassion and self-esteem in 50 PWID and 47 people without ID on a number of self-report measures. It was hypothesised that shame and self-compassion would mediate the relationship between negative interpersonal life experiences and self-esteem whilst social support would moderate this relationship. As predicted, shame and selfcompassion were found to mediate the relationship between negative interpersonal life events and self-esteem for PWID. There was no evidence for a moderating effect of social support and no difference in shame or self-compassion for PWID in comparison to controls. PWID were found to have higher self-esteem than participants from the general population. The findings suggest shame and selfcompassion are important concepts for PWID. Clinical and future research implications are discussed.

Background: People with intellectual disabilities (ID) remain at high risk of developing type 2 diabetes (T2D) due to lifestyle associated risk factors such poor diets and low physical activity levels. Interventions have been adapted which target ongoing T2D self-management. However, there are no adapted programmes which prevent T2D through reducing risk factors. The present research project addresses this gap through a three-phase study on the existing literature, theoretical basis, and process evaluation of a T2D prevention programme. Methods: Phase 1: The literature reviews identified that the support needs of people with ID with T2D are currently not being met. Appropriate training needs to be delivered so that people with ID can self-manage or reduce the risk of T2D effectively. Given the early onset of T2D in people with ID and their often shorter lifespan, there is rationale for a preventative agenda in T2D education. Four potential mainstream intervention programmes were identified, and the self-efficacy model was found to be the most prevalent successfully implemented theoretical model. Phase 2: Nine sub-themes were identified following analysis of the data: 1) "Mastery through knowledge"; 2) "Mastery through tools and strategies"; 3) "Mastery through autonomy"; 4) "Influence of social setting"; 5) "Positive social comparisons"; 6) "Positive and negative self-statements"; 7) "Feedback from Caregivers"; 8) "Adjustment experiences"; 9) "Symptom awareness". These were mapped onto Bandura's (1977) Four Sources of efficacy enhancement model and were consistentwith its proposed mechanisms. The Four Sources model serves as a useful mode of enquiry for exploring people with ID's experiences and perceptions of self-managing diabetes. It also confirms the appropriateness of ssself-efficacy as a potential intervention component for this population. However, additional support may be required for people with ID to reflect meaningfully on their experiences and thus have a sense of self-efficacy. Phase3: 96% of invited students agreed to participate. The Walking Away programme was positively received, and some short-term impact was described, yet there were limitations to accessibility of the program due to the complexity of the language and materials. Suggestions for further adaptations regarding materials and content were provided, and there was perceived scope for a long-term implementation built into college curriculum. Results: Phase One: The literature reviews identified that the support needs of people with ID with T2D are currently not being met. Appropriate training needs to be delivered so that people with ID can self-manage or reduce the risk of T2D effectively. Given the early onset of T2D in people with ID and their often shorter lifespan, there is rationale for a preventative agenda in T2D education. Four potential mainstream intervention programmes were identified, and the self-efficacy model was found to be the most prevalent successfully implemented theoretical model. Phase Two: Nine sub-themes were identified following analysis of the data: 1) "Mastery through knowledge"; 2) "Mastery through tools and strategies"; 3) "Masterythrough autonomy"; 4) "Influence of social setting"; 5) "Positive social comparisons"; 6) "Positive and negative self-statements"; 7) "Feedback from Caregivers"; 8) "Adjustment experiences"; 9) "Symptom awareness". These were mapped onto Bandura's (1977) Four Sources of efficacy enhancement model and were consistent with its proposed mechanisms. The Four Sources model serves as a useful mode of enquiry for exploring people with ID's experiences and perceptions of self-managing diabetes. It also confirms the appropriateness of self-efficacy as a potential intervention component for this population. However, additional support may be required for people with ID to reflect meaningfully on their experiences and thus have a sense of self-efficacy. Phase Three: 96% of invited students agreed to participate. The Walking Away programme was positively received, and some short-term impact was described, yet there were limitations to accessibility of the program due to the complexity of the language and materials. Suggestions for further adaptations regarding materials and content were provided, and there was perceived scope for a long-term implementation built into college curriculum. Phase Three: 96% of invited students agreed to participate. The Walking Away programme was positively received, and some short-term impact was described, yet there were limitations to accessibility of the program due to the complexity of the language and materials. Suggestions for further adaptations regarding materials and content were provided, and there was perceived scope for a long-term implementation built into college curriculum. Conclusions: The findings provide basis for a further trial incorporating the suggested adaptations. A self-efficacy informed prevention programme was highly acceptability to students and teaching staff. Further education colleges provided a supportive setting and yielded a rich sample.

This portfolio thesis consists of three parts: Part one - Systematic Literature Review The systematic literature explores and conceptualises the existing empirical literature relating to parent’s experiences of the transition to adulthood for their child with intellectual disabilities. A systematic search identified 16 studies relevant for this review. The transition process to adulthood is often accompanied by a number of processes, includes parental involvement and has psychological and financial impact on parents. The data was synthesised using a narrative synthesis approach, including the methodological critique of the studies. Conclusions from the evidence base are drawn, and implications for future research are considered. Part two - Empirical Paper The empirical paper explored the experiences of residential staff and healthcare professionals that have worked with young adults with intellectual disabilities who have been in the care of the Local Authority and transitioned to adult services. A qualitative approach was adopted, primarily a thematic analysis. Three superordinate and nine subordinate themes were identified. Participants’ experiences of the transition to adult services included what adulthood meant for young adults with intellectual disabilities once they departed from the care system, how transitions to adult services begin, and an absence of person-centred care occurs in adult services. The findings are discussed in the context of relevant theoretical and empirical literature, and the implications for services and future research are discussed. Part three - Appendices The appendices section provides a set of appendices relating to both the systematic literature review and the empirical paper. Also included in the appendices is an epistemological statement and a reflective statement, which consider the researcher’s experiences of conducting the empirical paper research.

Background: Stress and burnout is often reported within the ‘human service’ professions. A systematic review aimed to ascertain the prevalence of stress and burnout within clinical psychologists, and the coping strategies utilised by members of this profession. Specifically, the role of clinical psychologists that work with people with intellectual disabilities and behaviour that challenges may, arguably, be particularly challenging, given the risks inherent in behaviour that challenges. Previous work has found that paid and family carers for this population experience substantial levels of stress. However, little is known about the experiences of clinical psychologists who may play a pivotal role in the multi-disciplinary team supporting individuals and their carers. Methods: The systematic review explores the prevalence of stress, burnout and coping in clinical psychologists. An electronic review and hand search of the literature was completed. The quality of all eligible articles was assessed, and themes within the findings were discussed using a narrative synthesis approach. The subsequent empirical article explores the perspectives of 14 female clinical psychologists. Thematic analysis was utilised to derive themes from their interview transcripts. Results: Eight studies met inclusion criteria for the review; findings suggest that a large proportion of clinical psychologists experience symptoms of stress and burnout. Nevertheless, most psychologists also experience high levels of personal achievement in their role. Within the empirical study, two overarching themes were apparent across participants. These included difficult and positive experiences. Participants reported barriers to influencing change and feelings of stress, worry, anxiety, self-doubt and frustration within the role. However, supervision and support from colleagues appeared to moderate difficult emotions. All conveyed a sense of reward within their role. Conclusions: Comparable to other ‘human service’ professionals, clinical psychologists experience symptoms of stress and burnout. With regard to clinical psychologists working with people with intellectual disabilities and behaviour that challenges, it appears that supervision and support from colleagues is key in managing difficult emotions. Based on the findings, provisions that are believed to improve clinical psychologists’ experiences are considered.

Health information is often conveyed in printed or digital form. This can present challenges to people with intellectual disabilities, many of whom experience literacy difficulties and are therefore disadvantaged in reading and understanding such information. ‘Easy read’ versions of health-related documents purport to circumvent these difficulties, but there is little evidence to demonstrate their effectiveness in doing so. The aim of the current research was to address how effective adapted health-based ‘easy read’ literature was in contributing to the construction of meaning for people with intellectual disabilities. Four studies investigated different areas of ‘easy read’ information and its use. 1. A survey compared presentational features found in ‘easy read’ and ‘non-easy read’ literature published by the UK Department of Health and aligned these with advice given in published guidelines for ‘easy read’ material. 2. Critical differences between the linguistic features in these two groups of documents were analysed using specialised software. 3. A systematic qualitative linguistic analysis was undertaken to investigate the subtleties conveyed through the discourse of ‘non-easy read’ compared to ‘easy read’ texts. 4. Finally, a randomised experiment tested the effects of linguistic simplification and literacy mediation on the understanding of ‘easy read’ information with sixty participants with intellectual disabilities. When material was compared to its ‘non-easy read’ counterparts it showed that clear differences had been rendered by authors of the ‘easy read’ documentation. These differences were indicative of presentational changes and reduced linguistic complexity. They did not appear to translate into more effective understanding of content by people with intellectual disabilities, whether human mediation was present or not. Individual capacity for language, however, was shown to be integral to the construction of meaning from ‘easy read material’. This has implications for both the production and the use of ‘easy read’ material in practice.

Background: Whilst romantic or sexual attraction is a major research topic in the general population, little is known about people with intellectual disabilities’ views of attractiveness. Research exploring desirable romantic partner traits has indicated that people with intellectual disabilities appeared to hold less conventional views of physical attraction. This research explored what people with intellectual disabilities found attractive in others, as well as whether they thought other people found them desirable. Method: Twenty-nine adults with intellectual disabilities and twenty-nine adults without intellectual disabilities, all aged between 16 and 40 years old, were recruited from Further Education institutions and voluntary community organisations across Central and West Scotland. Depending on their sexual orientation, participants were shown 50 images of men or women’s faces and asked to rate how attractive they thought the faces were. A semi-structured interview explored participants’ reasons for their highest and lowest ratings, their views of themselves as desirable to others and what they thought were important qualities in a romantic partner. Results: A strong association was found between what men and women with intellectual disabilities and those without intellectual disabilities considered attractive in romantic partners. With regards to self-perceived desirability as a romantic partner people with intellectual disabilities were more likely to consider themselves desirable or attractive to others compared to their non-disabled peers. Conclusions: Consideration should be given to how people with intellectual disabilities’ self-perceptions may influence their dating preferences and relationship development. Speaking to people with intellectual disabilities openly about attraction and desirability could provide an opportunity to explore who they view as possible partners and to find ways to help individuals develop relationships. Limitations of the study and ideas for future research are discussed.

Following the exposure of abuse of people with Intellectual Disabilities (ID) at Winterbourne View, the Government launched the Transforming Care programme, to support people to transition out of hospital into their own home. A literature review revealed limited research into people with IDs experiences of transitioning. The study aimed to explore how transitions through Transforming Care were experienced. Eleven people with ID were interviewed about their experiences, with ten nominating a Key Support Person to be interviewed alongside them on a second occasion. Interviews were analysed using a Social Constructionist Grounded Theory methodology. The model demonstrated that participants experienced transitioning as a highly complex process of managing change. In hospital, how participants were seen by significant others and how they saw themselves resulted in a 'restricted story'. In moving to the community, participants and those around them were able to shift ideas about who they were, allowing for a 'widening out' of their story. Participants discussed seeking a sense of safety in new relationships, managing loss, and going through uncertainty as part of the process of transitioning. The findings of this study demonstrate that transitioning is not a single event, but an ongoing process over time. Clinical implications include ensuring that people with ID feel prepared about their move and the importance of staff understanding peoples' behaviours within a wider context.

This thesis explores the feasibility of participant-produced photography to augment therapeutic interventions for people with intellectual disabilities (ID). A systematic literature review was undertaken to determine the evidence base underpinning the use of participant-produced photography within therapeutic settings. A systematic search of peer-reviewed journals identified 13 relevant papers. Participant-produced photography showed promise, although evidence pertaining specifically to people with ID was sparse. The review concluded that participant-produced photography within therapeutic settings showed promise for people with ID. However, methodological implications rendered it difficult to derive firm conclusions regarding the effectiveness of different approaches. The empirical study undertook a component-analysis, focusing on the ‘values’ element of the Acceptance and Commitment Therapy (ACT; Hayes et al., 2011) treatment package. A multiple baseline across participants design (n = 6) was implemented. Self-reported ratings of anxiety, mood, experiential avoidance and life satisfaction were collated via text message every three days. Visual inspection and preliminary statistical analysis of the multiple baseline data indicated minimal effectiveness of a values-based approach in isolation. Photography facilitated clarification of the concept of values. Empirical findings suggest that value-based intervention may be necessary, but not sufficient for therapeutic change. The data are suggestive of relationships that warrant further scrutiny. The study lends support to the use of novel approaches such as photography and text-message data collection for intervention research with people with intellectual disabilities. The findings highlight the potential feasibility of a value-based approach for people with ID, augmented through the use of participant-produced photography to enhance conceptual understanding of the values component of ACT. The authors consider this to be a logical, preliminary step towards the initial basis of an ACT- ID evidence base. Implications for future research and clinical practice are further explored.

This thesis examines the effects of different forms of contact with people with intellectual disabilities on children and young people. Contact is seen as a key mechanism to tackling stigma but direct contact can be costly and difficult to implement. Imagined contact has emerged as a promising route to reducing prejudice but to date no studies have tested its effects on children and young people with regards to intellectual disabilities. Part one is a literature review examining the effects of direct and indirect school-based contact on children and young people’s attitudes and behavioural intentions towards peers with intellectual disabilities. The findings indicate that contact with people with intellectual disabilities has a positive effect on children and young people’s attitudes, particularly when the contact is more than one-off, structured and collaborative rather than via inclusive education alone. Many methodological limitations of the evidence are noted with regards to diagnostic labelling, sampling and measurement. Part two presents an empirical study which investigated whether imagining contact with a person with an intellectual disability improves children and young people’s intergroup attitudes, intergroup anxiety, social distance and contact selfefficacy towards people with intellectual disabilities. No statistically significant results were found. The findings are considered in relation to possible explanations, limitations and directions for future research. These include a need for future research examining imagined contact to adjust the intervention to provide a better fit for a school context. Part three is a critical review of the thesis. The review examines the concepts and methodology used and considers wider issues relating to stigma and imagined contact research, and intellectual disabilities. The review concludes with personal reflections on the process of conducting the research.

This treatise is an extended case study in the failure of applied psychologists to encourage care- workers in services to people with intellectual disabilities in the United Kingdom to use well- established, evidence-based behavioural approaches to reduce the behavioural challenges presented to services. Even when extensively taught and coached, they were rarely applied by care-workers in their everyday work, and had little or no impact on service practices. This failure had been attributed to care-workers being unwilling and unable to use these methods. An Institutional Ethnography discovered that 'challenging behaviour' is a phenomenon nested within a complex of relationships involving private and statutory service providers, service users, and commissioners. A range of ruling texts were in use, some coordinated, some apparently used competitively. The main coordinating ruling relations were the statutory obligations placed on local authorities, despite the presentation of other discourses promoting a person-centred, human-rights focused agenda. The role of applied psychology in these ruling relations is explicated using research literatures, field-work vignettes, and auto-biographical reports of professional practice.

This thesis is divided into three sections. The first section comprises a literature review, which aimed to understand the experiences of staff in supporting clients with intellectual disabilities with issues of death, dying, and bereavement. A metasynthesis was conducted to review 13 papers meeting the inclusion criteria. Three themes were developed: (1) Talking about death is hard: Negotiating the uncertainty in death, dying, and bereavement; (2) The commitment to promoting a “good death”; and (3) The grief behind the professional mask. An overarching theme, “A cautious silence: The taboo of death,” was also developed. The taboo culture surrounding death in intellectual disability services is discussed in relation to relevant literature, and clinical recommendations are offered. The second section, a research paper, explores the experiences of ten paid staff who have supported a person with an intellectual disability and dementia within a supported living setting. An interpretative phenomenological analysis was used. Four themes were developed: (1) The value of the pre-existing relationship to paid staff as dementia progresses; (2) Finding ways to connect when reciprocity has gone; (3) Resisting dementia “creeping in” and taking control; and (4) The stronger the pre-existing relationship, the greater the emotional cost of dementia. The findings support previous research, suggesting that intellectual disability services are well-placed to support people with intellectual disabilities with dementia, due to staff’s in-depth knowledge and well-established relationships. However, the findings also highlighted the emotional cost of this role to staff. Recommendations for clinical practice and ideas for further research have been offered. In the final section, the critical appraisal, I offer my reflections on the process of conducting the aforementioned research with paid staff supporting people with intellectual disabilities and dementia. I explore the process of developing the research idea, and reflect on the emotional nature of the topic.

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.

Background: This thesis contains two elements: the first is a systematic review examining some of the determinants of quality of life for people with intellectual disability. Understanding these determinants can drive improvement at both individual and societal level. Yet there are a number of quality of life measures which might confound findings between studies. This systematic review sought to identify factors that influence quality of life using self-report on one measure developed for use with people with intellectual disability, the ‘Quality of Life Questionnaire’ (Schalock & Keith 1993). The second element is an empirical study that aims to explore the lived experience of aging for older adults with intellectual disability. There are noted differences between people with and without disability as they grow older, for example in terms of health and social opportunity. Previous studies have not consistently sought the experience of the people with intellectual disability themselves, or have used participants not traditionally considered older adults. This study aims to address gaps and further our knowledge in the lived experience of getting older for older adults with intellectual disability. Method: Within the systematic review a systematic search of relevant studies to 20th January 2015 was completed using a specified inclusion criteria, yielding 13 peerreviewed journal articles. These were scored on 11-point purpose-designed quality criteria. For the empirical study semi-structured interviews were completed with ten participants with intellectual disability (age range 60 – 74 years, five female) regarding their understanding of getting older and their experience of ageing. Nine transcribed interviews were analysed using interpretative phenomenological analysis. Results: The systematic review found that living in a semi-independent environment or an urban setting, being employed, being involved in domestic and community activities, receiving social support and possessing social skills and self-determination were factors that improved quality of life for people with intellectual disability. Three major themes emerged from the empirical study data when participants discussed getting older: ‘Not changed by ageing’, ‘Thinking about the ageing process’ and ‘What happens when getting older’. Participants tended to feel that they were still the same due to continuation of the same activities and social support. They demonstrated confusion in the ageing process, considering the process ‘inevitable’ but insignificant, although also recognising some changes associated with the process. They discussed their views about what they considered happens when people get older, which tended to be stereotypical and often negative. However they also reflected on their own experiences and how they had changed. Discussion: The methodological quality of the studies reviewed was found to be generally low due to a range of factors including study design, measurement of intellectual disability and reporting of sample demographics and results and therefore conclusions should be treated with caution. This highlights a need for further research with people with intellectual disability of a higher methodological quality. The empirical study is discussed in reference to previous research and gerontological theories of ageing. The study highlighted that staff or family did not broadly discuss ageing with participants and their views often changed over the course of the interviews from more physical and negative aspects to how ageing impacted them. This research demonstrated older adults with intellectual disability do have opinions on ageing. Further exploration with people with intellectual disability on this topic is to be encouraged in the future to develop a more balanced view.

Background: Research has shown that mindfulness-based interventions (MBIs) can be effective in the treatment and management of a variety of psychological and physical health conditions. Whilst under researched, there is growing evidence to support the use of MBIs with individuals with intellectual disabilities (IDs) who may require adaptation to existing MBIs as a result of cognitive or other impairments. Method: This research dossier describes the development of an 8-week mindfulness group for adults with IDs. Two mindfulness groups were delivered by community practitioners. Participants completed self-report measures of anxiety and depression pre-intervention, postintervention and at follow-up. Participants were interviewed for their experience of the group and assessed for their ability to understand and engage with the basic concepts of mindfulness. Results: Participants reported a decrease in anxiety post-intervention which continued to decrease at follow-up five weeks after the final session of the mindfulness group. Selfreported depression also decreased post-intervention, however there was a slight increase at follow-up although this remained lower than baseline. The decrease in self-reported depression from pre-intervention to post-intervention was statistically significant. Participants were able to engage with, understand, enjoy and benefit from the mindfulness group and appreciated having the opportunity to meet with similar people with similar experiences. Conclusion: Results indicate that the mindfulness group had some positive effect on selfreported anxiety and depression states. Participant feedback coupled with the researcher’s own reflections offer direction for further adaptations that could be made to the mindfulness group and support the need for further research in this area.

While people with intellectual disabilities (IDs) are at increased risk of developing mental health problems, they are disadvantaged when accessing mental health services. The aims of this thesis are threefold: 1) to evaluate the efficacy of psychological therapies for people with IDs who experience mental health problems, 2) to improve the suitability of adults with IDs for cognitive behavioural therapy (CBT), and 3) to explore the acceptability of computer programmes in therapy as a reasonable adjustment to improve therapy accessibility. A systematic review and meta-analysis of the current literature were conducted and identified CBT and individual therapies as the most efficacious treatment for anger and depression. Although adults with IDs and concurrent mental health problems appear to benefit from psychological therapies, clinical trials need to make use of improved reporting standards and larger samples. Next, in two subsequent single-blind mixed experimental designs the efficacy of computerised training programmes in improving CBT skills in people with mild to moderate IDs is evaluated. Training programmes focused on linking situations to feelings and discriminating between thoughts, feelings and behaviours. When compared to an attention-control condition, training improved cognitive mediation skills, as assessed by the ability to link situations and mediating beliefs to feelings, and improved the ability to differentiate between thoughts, feelings and behaviours. In a concluding qualitative study, the perspectives of service users with IDs and clinicians on using computers in therapy were explored. Both service users and clinicians were positive about the potential functions and benefits of using computers in therapy, but also drew attention to potential challenges and barriers. Together, these studies show that computers can be used to improve the suitability of people with IDs for CBT and meanwhile encourage further exploration into the possibilities that these technologies can open up for improving the accessibility of psychological therapies.

Over the past 15 years psychological therapy for people with Intellectual Disabilities (ID) has been increasingly advocated (e.g., Linington, 2002) and successful treatment outcomes of psychological therapies for this population have been highlighted in a number of studies (e.g., Beail, 1998). However, the processes underlying these successful treatments are uncertain and some authors argue that success could be attributed to person-centred counselling rather than the specific approach adopted (e.g., Beail, 1998). Current literature highlights a substantial gap and an increasing need for research that identifies conditions under which the effects of therapy are optimised for people with ID through the exploration of barriers and facilitators to positive therapeutic change. This thesis explored the experiences of Clinical Psychologists (CPs), their clients with an ID and the client’s carers, with regards to the perceived barriers and facilitators to positive therapeutic change. Furthermore, this research aimed to develop a cohesive understanding from the multiple perspectives of the topic area. A triadic case design was utilised in which two triads of the CP, clients with ID and carers were nested by one CP. Therefore one ‘case’ constituted one CP, two of their clients (with ID) and two carers. Three of these cases were recruited and therefore this study had 15 participants and as the CPs were interviewed twice (once regarding each client separately) 18 interviews were completed. Thematic analysis was deemed to be an appropriate methodology to address the gap in qualitative research with people with ID. This methodology allowed the exploration of participant’s accounts whilst enabling the flexibility that is required to accommodate the varied abilities of people with ID. From the analysis of the transcripts of the 18 semi-structured interviews, five super-ordinate themes and one central theme were identified based on their frequency and salience from participants across all three participant groups. The first super-ordinate theme, ‘what the client brings’ encapsulated a number of factors related to the client that participants perceive to be initial barriers within therapy, namely, the ID itself (e.g., communication skills, memory) and the client’s engagement in therapy. A second super-ordinate theme that the client also brings to therapy is their ‘wider system’. This theme encompasses the facilitating role that a wider support network can play and also the barriers that the wider system can bring with regards to the negative influence of others on the client. A third super-ordinate theme related to ‘therapy factors’ that are generally perceived to be facilitators to overcome the barriers that clients bring to therapy. This included therapy adaptations and the therapeutic relationship. The fourth super-ordinate theme, namely ‘the mental health GP’ encompasses the concept that psychologists are required to coordinate the often extensive wider system of people with ID and this is because participants felt that in order to benefit from individual therapy, all of the client’s needs must be met, including physical health needs and ensuring that the client lives in an appropriate environment. Given the four super-ordinate themes noted above, all of these concepts foster the fifth super-ordinate theme ‘systemic dependency’. The mere presence of an ID means that naturally people are more dependent on others. As a result, therapy factors including the therapeutic relationship and adaptations to therapy (e.g., increased longevity of therapy) can foster strong attachments which can facilitate an unhelpful level of dependency. Additionally, the client’s wider system can also become dependent on services to help them facilitate care and coordinate the numerous services involved. All of these super-ordinate themes maintain the concept of the ‘revolving door’ into services. Additional subthemes noted in the extended paper are examples of barriers and facilitators to therapeutic change that are considered to have an important impact on therapy but were only noted by one group of participants (e.g., clients) and thus did not contribute to cohesive understanding of multiple perspectives aimed for within the journal paper. For example, clients reported confidentiality to be a barrier and CPs reported attachment difficulties of clients to be a barrier. The results of this study offer the first explorations of conditions under which therapy can be optimised for people with an ID through the awareness of barriers and facilitators to positive therapeutic outcomes. CPs are shown to be skilled at overcoming barriers within therapy; however there appeared to be a process of facilitators creating more barriers within therapy and the phenomenon of the revolving door needs to be fully considered. Given the potential impact of funding constraints on the role of CPs and access to psychological therapies for people with ID, this has important implications for the way psychologists working within this population market themselves and further evidence their work.

There is little literature that explains the relationship between intellectual disability (ID) and physical and sensory disabilities. A review conducted in 1987 indicated increased prevalence of physical health problems amongst people with ID (McLaren & Bryson, 1987). The current classification system used by the International Federation for Para Athletes with Intellectual Disability (INAS) does not take into account any relationship between ID and physical or sensory disabilities . The present study aimed to provide evidence to enable INAS to address the potential inequalities in the classification system and to add to understanding of the relationship between ID and physical and sensory disability. Participants (N=111) were recruited from regional and international sporting events for people with ID. IQ measurements were gained either from records or by administration of an assessment. All participants, with a trusted adult, were administered a semi-structured health interview. Findings indicated a weak negative correlation between IQ and additional physical disability. The data also suggested that level of additional physical disability negatively predicts athletic performance and there is some limited support for the suggestion that IQ positively predicts performance. The findings have implications for INAS and health/social care services.

The portfolio has three parts these being: the systematic literature review, the empirical study and the appendices. Part one is a systematic literature review into the influences on the subjective wellbeing of people with intellectual disabilities. It presents an understanding of people with intellectual disabilities, how wellbeing as a concept is currently understood and how their subjective wellbeing can be influenced. Part two is an empirical paper which used different methods to explore how young people with intellectual disabilities perceive their experiences of attending a sports group with their peers of similar abilities and how this experience influences their subjective wellbeing. To achieve this eight young people aged 9 – 13 years old completed an adapted wellbeing measure to quantify their subjective wellbeing. A semi structured interview, incorporating creative methods to collect data was employed to ensure that this often under represented group could have a voice. The themes of this research are discussed and linked to previous research to identify clinical implications and the methodology is also discussed and future research opportunities are identified. Part three comprises the Appendices to support the work in the first two parts of the thesis including a reflective account of the research process.

This doctoral thesis explores the experience of intimate relationships for people with intellectual disabilities, with a focus on caregiver support. It includes a literature review, research paper, critical review and ethics section. The literature review is a qualitative meta-synthesis of the difficulties experienced by caregivers relating to the sexuality of people with intellectual disabilities and examines how caregivers address these difficulties. The synthesis produced five meta-themes: 'Fear and Uncertainty', 'Impact of Perceptions of Sexuality', 'The Same and Different', 'Balancing the Roles of Protector and Facilitator' and 'Conditional Sexuality: Conditional Support'. The findings suggest key issues for caregivers in relation to addressing the sexual needs of people with intellectual disabilities and makes recommendations for future research and clinical practice. The research paper then examines similar issues from the perspective of people with intellectual disabilities themselves. Previous literature suggests that people want relationships and people with intellectual disabilities have historically been denied their human rights. An interpretative phenomenological analysis was conducted exploring the experience of intimate relationships for nine adults with intellectual disabilities. Four main themes were identified; desiring relationships; expressing sexuality; doing relationships; and who has control? Implications for clinical psychology theory and practice are discussed. The critical review explores some of the considerations needed when conducting qualitative research with people with intellectual disabilities. It details some of the adjustments made and gives additional reflections on the research process.

Background: Through their experiences of stigma and discrimination, people with intellectual disabilities may develop negative beliefs about themselves and compare themselves negatively to others. This may make them more sensitive to criticism from others. In addition, receiving praise may be discrepant with the self-views of people with intellectual disabilities and they may be less likely to benefit from praise. Being distressed by criticism has been associated with vulnerability to mental health difficulties in the general adult population. It is not known how people with intellectual disabilities perceive and experience criticism and praise. Method: Two study groups were recruited; one with intellectual disabilities, one without. The praise and criticism task (PACT) was developed for the study. Participants were presented with ten scenes in which they were asked to imagine someone saying something positive (praise) or negative (criticism). Following the presentation of each scene, participants were asked about their emotions, beliefs, thoughts and actions. Results: People with intellectual disabilities were more likely to believe and be distressed by criticism. Contrary to predictions, this group were also more likely to believe and experience positive affect in response to praise. No differences were found in the frequency of self-supporting thoughts or actions reported in response to criticism. Conclusions: The results may represent a difference in the way people with intellectual disabilities develop their sense of self and may suggest that the self-perceptions of this group are more dynamic and reliant on the views of others. In theory, such sensitivity could make people more vulnerable to mental health difficulties. On the other hand, the possibilities for positive influence have implications for psychological and social interventions.

Volume I includes the research volume of the thesis and includes three papers that focus upon the relationship between staff, client and organisational variables with burnout in staff who work with people with intellectual disabilities. The literature review critically examines the literature related to organisational climate and burnout in staff who work within services for people with intellectual disabilities. The empirical paper examines the relationship between client (challenging behaviour), staff cognitive (fear of assault) and organisational variables (social climate) with staff burnout, and aimed to investigate which of these variables contribute most to staff burnout. These papers have been prepared for submission to the Journal of Applied Research in Intellectual Disabilities. The public domain briefing paper (Appendix 1) briefly outlines the findings from the literature review and the empirical paper. Volume II includes five clinical practice reports that were produced as part of the assessment of clinical component of the Clin.Psy.D and are entitled: 1. Clinical Practice Report 1 (Psychological Models): Kayleigh – Formulating the case of a 3 year old with behaviour and sleeping difficulties from a psychodynamic and behavioural perspective. 2. Clinical Practice Report 2 (Service Evaluation): Parents’ Experience of the Community Learning Disabilities Team – Children and Adolescents (CLDT – CA). 3. Clinical Practice Report 3 (Case Study): Using Cognitive Analytic Therapy (CAT) with a 33 year old man presenting with low mood, self harm and PTSD symptoms. 4. Clinical Practice Report 4 (Single Case Experimental Design): Connor, a 10 year old boy with a dog phobia who was treated with systematic desensitisation. 5. Clinical Practice Report 5 (Oral Presentation): Case study of a 70 year old woman experiencing low mood.

This thesis is presented in three parts. The overall focus of the thesis relates to stigma, public attitudes and beliefs towards individuals with intellectual disability. Part one presents a systematic review which explored the findings of empirical interventions aimed at increasing awareness and targeting attitudes towards people with intellectual disabilities. Currently little is known about the types of interventions which have been attempted and the effectiveness of these initiatives. The review highlighted promising outcomes from interventions that aimed to increase knowledge through delivering education whilst support for the positive influence of contact, both indirect and direct, has been demonstrated by several interventions. Whilst methodological limitations of quantitative measurement tools are considered, the review concluded that awareness and change interventions do show promise for improving attitudes towards intellectual disabilities. Part two is an empirical paper that investigates the impact of a film-based intervention on inclusion attitudes and stigmatising beliefs towards individuals with intellectual disabilities held by members of the UK South Asian community. Previous research has suggested that contact may be effective in improving public attitudes. The effect of indirect contact as a promising component of stigma change initiatives is examined by comparing the impact of two film conditions. The extent to which brief interventions can generate actual behaviour change to improve the lives of individuals with intellectual disabilities is discussed. Part three offers a critical appraisal of the study presented in the empirical paper. The appraisal discusses the process of developing the intervention with reference to key messages and content. Difficulties encountered during the research process with a specific focus on recruitment are outlined. Consideration is also given to the benefits and limitations of conducting online research.

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.