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AbstractThis special issue is a contribution to stimulate discussion and debate in the community of scholars in the field of intellectual and developmental disability around the ethical issues of ending the lives of people with intellectual disabilities. It features a stimulus paper and then a series of invited commentaries. An initial, large monograph was shared with a group of scholars, scientists, and researchers in the global community who were invited to provide commentary. The monograph is available on the webpage of the International Association for the Scientific Study of Intellectual and Developmental Disability's Ethics Special Interest Research Group. An abridged version of the monograph is published as the first article in this special issue. In keeping with the process followed by journals such as Lancet and journals of The Royal Society, this paper has not been peer‐reviewed in a blind process. The review is in the commentaries that follow. A range of opinions and perspectives indicate the complexity of this important topic and the critical value of debate and discussion.

AbstractTrauma informed care has become an evidenced based approach for inpatient and residential services for people in the general population who are likely to have been impacted by trauma. Given the increased vulnerability to psychological trauma for adults with an intellectual disability, it should follow that residential services for adults with an intellectual disability would also benefit from a trauma informed care approach. Two focus groups and individual interviews with seven adults with an intellectual disability and six workshops with seven service providers were conducted to co‐produce a trauma informed care framework for residential services that was evidence‐based and guided by established models (MRC, Developing and evaluating complex interventions, London: MRC & NIHR, 2019; Wight et al., Journal of Epidemiology and Community Health, 70, 520–525, 2016). The framework was developed into four chapters: 'Setting the context'; 'Organisational change'; 'Workforce development'; and 'Trauma focussed services'. A logic model outlining the mechanisms of change was refined over the course of the co‐production workshops. This is the first study to develop and co‐produce a trauma informed care framework for residential and supported living accommodation for adults with an intellectual disability. The framework has implications for local policy and practice in its current cultural context. Future development is required to operationalise and test the framework and to explore its adaptability to international contexts.

AbstractBackgroundPeople with an intellectual disability are more vulnerable to psychological trauma compared with the general population. The aim of this scoping review was to identify the current status of the literature on trauma that is specific to the experiences of adults with an intellectual disability, living in community settings.MethodsA scoping review was conducted using the Arksey and O'Malley (International Journal of Social Research Methodology, 2005, 8, 19) framework. Forty‐one international papers were reviewed spanning 2000–2020, and their quality assessed using the MMAT.Findings(1) Aggressive behaviours can be symptoms of trauma, (2) there are appropriate assessment tools for the impact of trauma, (3) evidence‐based interventions for trauma may be effective, and (4) factors associated with disability can be experienced as traumatic.ConclusionThere is a growing body of literature highlighting assessment needs and potential interventions for people with an intellectual disability who have experienced psychological trauma. Further research is needed to develop trauma‐informed pathways.

BackgroundThe health‐related behaviours of people with intellectual disabilities may be determined by organisational influences. This innovative study aimed to explore managers' and staffs' perspectives on organisational influences on the promotion of healthy behaviours for this population.MethodA qualitative methodology was employed. Four focus groups with staff and eleven telephone interviews with managers were undertaken across three residential services in one region (Northern Ireland) of the UK. Transcripts were analysed thematically.FindingsThe organisations involved in this study did not have the cultural ethos or capacity to sustain consistent support for staff involvement in health promotion. Organisational support and outcome‐focused strategies are recommended for encouraging staff involvement in health promotion activities.ConclusionThese findings have implications for some organisations that support people with intellectual disabilities in improving the way they facilitate health promotion. They highlight the need for organisational cultures to facilitate knowledge translation and embrace evidence‐based health promotion interventions.

AbstractBackgroundInternationally, many children and adults with intellectual disabilities are continually being supported by their family members to live within their family home. However, as a consequence of the ageing process some family members can struggle to continue to care because of their failing physical and/or mental ill‐health. This has resulted in a shift in the parameters of the relationship for some adults with intellectual disabilities with their formerly dependent role evolving into a caregiving one. This had become known as "reciprocity" or "mutual support." Limited information exists about these "hidden carers" and what services are available to support them.AimThis article explored the lived experiences of nine adults with intellectual disabilities who provided emotional and tangible support to an ageing family member.MethodA qualitative methodology was employed using semi‐structured interviews. Nine participants with mild‐to‐moderate intellectual disabilities were interviewed within one region of the United Kingdom. The interviews were analyzed using thematic analysis.FindingsFive themes emerged within these narrative accounts: natural transition to caring; the health needs of the ageing family member; support; impact of caregiving and future planning.DiscussionThe needs of these unknown hidden carers, and also ageing family members, are immediate and urgent. Policy makers, commissioners and service providers need to examine the type of "in‐house" support provided to these new carers if they are to continue living within their family home with their ageing family member, who will also need additional support. Neglecting both cohorts will lead to greater costs to services in the longer term and seriously threaten the quality of life of people with intellectual disabilities and their family carers.

AbstractBackgroundGlobally, conducting randomised controlled trials can be a complex endeavour. The complexity increases when including participants with cognitive or intellectual disabilities. A fuller understanding of the barriers and challenges that can be expected in such trials may help researchers to make their trials more inclusive for people with disabilities.MethodSemi‐structured interviews were conducted with twelve international trial experts.ResultsEight themes emerged relating to challenges linked to: 1) participant co‐morbidities, 2) participant ability levels, 3) ethics and consent, 4) the RCT methodology, 5) gatekeeping, 6) staff turnover, 7) lack of technical understanding and 8) attitudes and perceptions.ConclusionConducting trials with cognitively disabled participants can pose unique challenges although many can be overcome with 'reasonable adjustments'. Challenges that are harder to overcome are attitudes and perceptions that people (professional staff, funding bodies, carers or fellow researchers) hold towards the utility of conducting trials with cognitively disabled populations.

AbstractBackgroundCreating equitable access to mainstream health and healthcare service has been promoted as a means of addressing the health disparities experienced by people with intellectual disabilities (ID) globally.Specific AimsThis study addressed two questions: What strategic actions are most likely to bring about inclusive primary, secondary, and tertiary health systems for people ID? What are the system indicators that can be used to evidence a reduction in health disparities for this population?MethodA four‐phase study was undertaken involving an international expert advisory group, literature reviews, and individual interviews with 16 key informants from Special Olympics (SO). These led to an online international survey in which 61 respondents rated the relevance and feasibility of 30 strategic actions and system indicators to promote inclusive systems and reduce health disparities.FindingsAll the strategic actions and system indicators were endorsed as relevant but less so for the feasibility of implementing them. Top‐rated strategic actions included the availability of policy statements and practice guidelines on making reasonable adjustments, mandatory training of health professionals on ID, and their involvement as cotrainers in staff training.DiscussionImplementing these strategic actions and system indicators will be a major undertaking and one that is unlikely to be speedily achieved given the many different policy and health systems that exist even within a locality as well as nationally and internationally. Nonetheless, the identified actions and indicators from this study can form the basis for improved access to health and for advancing the human rights of persons with ID.

AbstractBackgroundObesity is higher in people with intellectual disabilities.AimsThere are two aims of this explorative paper. Firstly, using a realist lens, to go beyond 'what works' and examine the 'context, mechanisms and outcomes' (CMO) of lifestyle/obesity programmes for this population. Second, using a logic model framework to inform how these programmes could be implemented within practice.MethodWe explored six‐review papers and the individual lifestyle/obesity programmes that these papers reviewed using the CMO framework.ResultsThere were few theoretically underpinned, multi‐component programmes that were effective in the short to long‐term and many failed to explore the 'context and mechanisms'. We developed a logic model and engaged in two co‐production workshops to refine this model.DiscussionUsing a realist approach, programmes need to be underpinned by both individual and systems change theories, be multi‐component, have a closer understanding of the interplay of the 'context and mechanisms', and co‐designed using a logic model framework.

AbstractBackgroundTaking a trauma informed care approach has demonstrated positive outcomes for services for people in the general population. Given the increased vulnerability to psychological trauma for adults with an intellectual disability, this study explores what residential staff know about trauma and trauma informed care.MethodsThirty‐two staffs representing three staff groups: direct care staff; managers; and specialist practitioners, were interviewed using semi‐structured interviews, which were analysed following a structured framework.FindingsEach staff group held different perspectives in their knowledge of trauma and trauma informed care. Limitations were noted in staffs' knowledge of trauma, implementation of evidence‐based supports, and access to specialist services for adults with an intellectual disability. All participants highlighted their training needs regarding trauma.ConclusionIncreased training on recognising and responding to trauma is needed among community staff supporting those with a trauma history if organisations are to move towards trauma informed care.

AbstractPeople with intellectual disabilities die at much younger ages than the general population, with this gap in life expectancy greater for females than males. This study aimed to seek the views of international experts concerning evidence relating to gender and the premature deaths of people with intellectual disabilities, their views on priorities for future research, and recommendations for future research and policy. Twenty international experts on the health and/or mortality of people with intellectual disabilities were invited to complete an online questionnaire. The questionnaire was based on summary statements from a literature review on gender and premature death among people with intellectual disabilities compared to the general population. Summary statements included general topics such as mortality and specific major causes of death (e.g., cancer). For each summary statement, respondents rated on 5‐point scales: their agreement with the statement; the importance of the topic; and the adequacy of the evidence. Participants then indicated their top three priorities for future research, and gave recommendations for future research and policy. Eighteen (90% response rate) respondents from nine countries participated. There was consensus among respondents regarding the greater inequality in intellectual disability vs. general population mortality rates for women compared to men. Evidence was considered inadequate for most topics. Evidence on cause‐specific death rates was the most frequently mentioned main research priority, followed by age trends in mortality compared to the general population. Recommendations ranged from the need to use consistent methodology and case definition in future research, to the need for governments to be called to account on the issue. Further evidence on gender and mortality is urgently needed; an international consensus on recommendations for future research pertaining to gender and the premature deaths of people with intellectual disabilities would greatly assist the development of evidence‐based policy and practice.