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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.

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.

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.

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.

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.

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: 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.

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.

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.

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.

Background: Despite numerous benefits to being online, a digital inequality exists; where those with intellectual disabilities often have their internet access and use restricted, as a result of barriers, such as gatekeeping (Chadwick et al., 2013, 2017). Large gaps in the literature exist, in relation to the online risks which people with intellectual disabilities may encounter and how experiencing online risks may impact people with intellectual disabilities. In better understanding the online risks experienced, and how they impacted people with intellectual disabilities, we can better support people with intellectual disabilities to manage these threats as part of a positive risk-taking approach to internet membership, thus closing the digital inequality divide (Seale, 2014; Seale & Chadwick, 2017). This thesis addresses these gaps and seeks to contribute to counselling psychology's social justice agenda by improving digital inclusion, through better understanding online risks for adults with intellectual disabilities. Method: Fifteen adults with intellectual disabilities were interviewed remotely using semi-structured interviews. Findings: The data from the interviews were analysed using Template Analysis, which evidenced four main themes: 1) The Types of Online Risk; 2) The Psychological Impact of Online Risk; 3) The Management of Online Risk and 4) The Support for Online Risk. The study findings offer novel insights, where all participants had knowledge of online risks, and those who had experienced victimisation reported experiencing a wide range of negative emotions immediately following the event, but in some instances, there was also personal growth, and the majority of participants were able to delineate different coping strategies which they use to manage online risks. The implications and recommendations based on the findings for practitioners including counselling psychologists are outlined. The researcher provided an original contribution to knowledge in the form of phenomenological experiences of adults with intellectual disabilities of online risks, including online negative comments and/or messages.

Background: Assessment of dementia in adults with intellectual disabilities poses specific challenges. Firstly, there is a paucity of validated, standardised and appropriate neuropsychological assessments of memory for adults with intellectual disabilities. Secondly, there are difficulties determining whether performance on neuropsychological assessments are attributable to preexisting intellectual disabilities, ‘normal’ ageing or part of a dementing process. A systematic review was therefore carried out to examine if there are memory changes associated with ‘normal’ ageing in the Down syndrome population. Following this an exploratory empirical research project was undertaken to examine one aspect of construct validity (i.e. convergent validity) of an associative memory test in a sample of adults with intellectual disabilities. This research project is presented as a journal article titled ‘Convergent validity of the Visual Association Test (VAT) in adults with intellectual disabilities’. Methods: 40 participants aged between 18-45 years were recruited from Community Learning Disability Teams. Participants completed the VAT and subtests of the modified Cambridge Cognitive Examination (CAMCOG-DS). IQ was assessed using the Wechsler Adult Intelligence Scale, Fourth Edition (WAIS-IV). Correlational analysis of the test variables were carried out. Participants with a diagnosis of dementia were excluded from the study. Results: All participants performed well on the VAT irrespective of age, gender or IQ. It was well received by participants. No significant correlations were found between the VAT and the subtests of the CAMCOG-DS or with the subtests of the WAIS-IV. Therefore, there was no evidence of convergent validity with this test in this sample of participants. Conclusions: While the VAT was found to be an easy, quick test to use with people with intellectual disabilities and all participants scored above ‘floor’ level, it was not found to have convergent validity with the CAMCOG-DS. Further research is needed to determine if the VAT represents a useful tool for assessment with this population.