Journal of Intellectual Disabilities最新文献

The UN Convention on the Rights of Persons with Disabilities (CRPD) describes supported decision making as a fundamental human right. This study explores relatives' experiences, dilemmas, as well as key factors in supported decision-making processes with adults with intellectual disabilities living in municipal housing. The study draws on qualitative, in-depth interviews with relatives. Findings suggest that we can learn about supported decision making by using choice architecture and care theories, demonstrating that: (a) supported decision-making sometimes requires careful facilitation with a focus on the person's preferences/perspective; this careful facilitation can be understood in terms of choice architecture, (b) choice architecture in the context of intellectual disability requires an intentionality of care and a focus on the person's preferences/perspective, (c) relatives are concerned, not only with support in the moment, but also the effect of the decision in the long term, and (d) relatives' care is a significant factor in meeting choice architecture in systemic conditions.

This qualitative study focuses on what feeling safe means for people with mild intellectual disabilities and severe challenging behaviour, and which factors affect their sense of safety. Thematic analysis was used to analyse data collected during (1) ethnographic longitudinal research and (2) interviews and focus groups among professionals and service users. Feelings of safety were related to three main themes: (1) a physical environment that reduces risks and temptations; (2) a reliable, predictable, and supportive environment; and (3) an accepting environment that enables service users to establish a normal life. An analysis of which factors affect service users' sense of safety identified 20 themes (e.g. team climate) and 34 subthemes (e.g. interactions with other service users). Many of these factors were interconnected. Future research should explore what residential service organisations for people with intellectual disabilities and external actors (e.g. the police) can do to promote service users' feelings of safety.

We conducted a rapid scoping review of empirical studies to identify how persons with intellectual and other cognitive disabilities have been engaged as active members of research and evaluation teams. We conducted a literature search using a systematic method that accessed peer reviewed studies in relevant library databases and all major evaluation journals. The search resulted in 6,624 potential articles, of which 32 met the inclusion criteria for this study. The findings address three categories of interest: 1) methodological underpinnings and practical justifications for using inclusive approaches, 2) different inclusion processes, and 3) reflections by researchers with and without intellectual and other cognitive disabilities. Findings provide conceptual and practical insights for researchers and evaluators when designing inclusive methods involving persons with intellectual and other cognitive disabilities. Gaps in inclusive research and evaluation are discussed and suggestions for future research are proposed.

Disparities in healthcare are observed among people with intellectual disabilities. They generally face stigmatisation and negative attitudes from healthcare professionals. The aim of this study is to investigate the link of diagnostic label and social distance on inclusive health representations and practices towards people with intellectual disabilities among healthcare professionals. We conducted an online survey of 163 healthcare professionals living in French-speaking Belgium. The results highlighted that the diagnostic label and a lower social distance predict better representations and practices in inclusive health. In addition, an analysis of mediation showed the mediating effect of social distance on the link between being in contact with people with intellectual disabilities (through employment) and better representations and practices in inclusive health. This study enabled us to assess the interplay between stigma variables and healthcare professionals' representations and practices towards people with intellectual disabilities and to identify potential facilitators for promoting health equity.

People with intellectual disabilities are often excluded from participation in research, whilst research has the potential to enhance positive change in their lives. In the current study, using a guided photovoice procedure, the experiences of people with intellectual disabilities regarding participation in research are evaluated. A total of 14 participants with intellectual disabilities were interviewed using guided photovoice. Through thematical analyses the experiences of people with intellectual disabilities regarding photovoice are discussed. Benefits were taking time, visual cues and the opportunity to speak out. Challenges were abstract concepts and aftercare. Guided photovoice helps to better understand the perspective of people with intellectual disabilities and thus can help to improve their quality of life. People with intellectual disabilities were interested in taking part in the current research project and experienced participating as a positive experience. However careful planning and expertise in communication with people with intellectual disabilities is necessary to include people with intellectual disabilities in research.

The design of intellectual disability research warrants critical examination, as the knowledge produced through these approaches informs evidence-based practices. People with lived experience should be recognised as experts in understanding their own bodies, conditions, and treatment. This systematic review examined the design of Delphi studies to assess the extent to which people with intellectual disability are included as experts. The Delphi method, which gathers structured feedback from experts, offers insight into how lived experience is valued as a source of knowledge. Across fifty-five publications reporting on forty-nine separate Delphi studies that met our inclusion criteria, only nine involved people with intellectual disability directly. In contrast, family and informal caregivers were more frequently represented as experts, and their perspectives carried greater influence. The findings of this review include guidance for practitioners and researchers to facilitate greater participatory roles of people with intellectual disability.

Safety is a significant clinical challenge in settings serving adults with developmental disabilities. Few resources exist to guide clinical teams in this realm; this study explored safety elements through interviews with experts in critical areas of safety management. The present study aimed to gather knowledge and insights regarding assessing risk among individuals with disabilities. Due to gaps in the available safety literature in adult services, interviews in related areas were conducted and analyzed for thematic content. This paper focuses on the extracted safety themes' categorization, summarization, and implications. The safety themes extracted from the interviews included environmental arrangements, medical, independent living skills, historical indicators of risk, family life skills, challenging behavior, and communication. The interviews identified areas of concern that might guide assessment and inform providers about the most individually relevant contexts to consider when supporting clients.

Whilst existing literature describes the experience of transitioning in mainstream mental health services, little is known about specialist learning disability services. The following study aimed to explore how parents of young adults, aged 17 to 21, with intellectual disability make sense of their experiences of transitioning from learning disability Child and Adolescent Mental Health Service (CAMHS) to adult community learning disability teams. Semi-structured interviews were conducted with four parents of individuals diagnosed with a learning disability who were receiving care in the adult community learning disability team. Transcripts were analysed using interpretative phenomenological analysis. Three group experiential themes emerged: impact of transition on sense of control, making sense of challenges experienced, and wishing for a better service. The findings highlighted experiences of parents transitioning both through specialist health and social care services. Future research should seek to understand the impact of race on transition and experience of service.

This study used qualitative surveys and focus groups to evaluate the implementation of an end-of-life care planning toolkit within intellectual disability social care services, by exploring whether it is beneficial and workable in this setting. Participants were staff trialling the toolkit and submitting feedback forms. Focus groups with support staff and service managers were also conducted. Feedback forms and focus group transcripts were coded using a modified framework approach. Data and analyses were discussed within the team (including researchers with intellectual disabilities). Thirty-four participants submitted 44 feedback forms. Two focus groups with seven participants were held. Participants found the toolkit approach and resources acceptable and appropriate, prompting positive eye-opening conversations. There were significant adoption and feasibility implementation challenges such as printing the resources, lack of time, and the sensitive end-of-life topic. Exploration of how to overcome these challenges is needed to successfully implement the toolkit in social care services.

Learning to read can be challenging for students with intellectual disability, but studies on reading interventions for this population show that it is possible when utilising evidence-based instructional methods. This study investigated how teachers in Swedish compulsory schools for students with intellectual disability described the content of their reading instruction. An abductive thematic analysis of 13 teachers' logbooks revealed difficulties in balancing the required focus on knowledge acquisition while simultaneously making reading instruction accessible and motivating for students. These findings underscore the importance of guiding teachers in aligning individual adaptations, particularly those motivated by student interests, with evidence-based practices in reading instruction. This alignment is crucial to ensure that students receive instruction that engages them and effectively supports their reading development.