This book pushes the boundaries in the way we approach people with profound intellectual and multiple disabilities, and in how we work with them in education and research. While it is grounded in ...diverse theoretical frameworks and disciplines, the book coheres around a commitment to seeing people with profound intellectual and multiple disabilities as equal citizens who belong in our classrooms, research projects and community lives. Each section covers policy contexts, key ideas and recent research. Featuring contributions from around the world, the book incorporates established and new voices, different disciplines and experiences. Additionally, it includes pieces from family members of people with profound intellectual and multiple disabilities. Divided into three parts, the book explores three main topics: (1) Belonging in education; (2) Belonging in research; and (3) Belonging in communities. "Belonging for People with Profound Intellectual and Multiple Disabilities" is an invaluable resource for scholars, professionals and postgraduate research students with an interest in children or adults with profound intellectual and multiple disabilities.
The added value of inclusive research Walmsley, Jan; Strnadová, Iva; Johnson, Kelley
Journal of applied research in intellectual disabilities,
September 2018, 2018-09-00, 2018-Sep, 20180901, Letnik:
31, Številka:
5
Journal Article
Recenzirano
Odprti dostop
Background
The study asks when does inclusive research add value? The authors argue that this is important, given the additional time and cost of co‐researching with people with intellectual ...disabilities. The study is situated in debates about a “second generation” of inclusive research which advocates focussing more on outcomes than process. The authors argue that this is premature, rather the authors propose that inclusive research is valuable when it helps to recognize, foster, and above all communicate the contributions people with intellectual disabilities can make.
Method
The authors conducted a literature review of 52 peer‐reviewed journal articles about inclusive research and analysed them..
Results
The authors conclude that inclusive research adds value when there is a distinctive contribution which only co‐researchers with intellectual disabilities can make, when it highlights the contributions people with intellectual disabilities make, and when it contributes to better lives for the wider population of people with intellectual disabilities.
Conclusions
The authors propose a revised definition of inclusive research to replace that published by Walmsley and Johnson in 2003.
Background
Inclusive research is increasingly common in intellectual disabilities research, but ways in which voice of co‐researchers with intellectual disabilities is presented remain underexplored ...in the literature.
Materials and Method
The authors conducted a literature review and analysis of peer‐reviewed journal articles reporting on inclusive research. The aim was to explore the ways the voices of co‐researchers with intellectual disabilities are represented in published peer‐reviewed journal articles.
Results
The findings indicate that there are a wide range of ways in which inclusive research projects are reported in peer‐reviewed journals. However, the experiences, views and opinions of co‐researchers are often either absent or very selectively reported.
Conclusions
The article concludes that although inclusive research has proliferated in the 21st century, more attention needs to be paid to the ways in which the voices of co‐researchers with intellectual disabilities are heard in formal academic contexts. Guidelines for future practice are offered.
We chose to respond to this paper because bad things are happening in health care for people with intellectual disabilities. We met with Chris Hatton, one of the authors of the article. There were ...things we liked about the article, things we liked about the study that were not in the article and things we asked Chris about. We enjoyed talking to Chris about the study and writing our response.
Older people with intellectual disabilities (ID) experience numerous transitions in their lives, which include transitions between jobs, places of residence, relationship transitions, and transitions ...to retirement. Ensuring quality planning for the future is important so that older people with ID can live good lives. Thus, the aim of this study was to explore planning for the future and transitions experienced by older people with ID. The author conducted semi‐structured in‐depth interviews with 17 people with ID aged 40 years and more. The interviews were analyzed using inductive content analysis. The three main themes were types of transitions, planning for future, and barriers to planning for future. The implications for research and practice are discussed, with a focus on enhancing independence and choice‐making.
Background
Adults with severe/profound intellectual disability typically face poor communication outcomes as they are often nonverbal and need their supporters to provide for their communication ...needs. This review aimed to identify studies focused on the communication resources people with severe/profound intellectual disability use for functional communication, and the enablers and barriers to functional communication.
Methods
Nine databases were systematically reviewed with keywords pertaining to the functional communication of adults with severe/profound intellectual disability. Out of 3427 identified articles, 12 met the inclusion criteria. Hand searches and ancestral searches identified another 4 articles. Out of the 16 articles, two did not meet the quality assessment criteria and were excluded. Thus, 14 articles were included in this review.
Results
The findings revealed that picture exchange communication systems is the most common communication system used to support the development of functional communication. The most common functions enabled by the communication systems were choice‐making and making requests. Several barriers (e.g., individual factors related to adults with severe/profound intellectual disability, others' attitudes, behaviour and knowledge) to and enablers (e.g., accessibility and availability of the communication system, training for those supporting adults with severe/profound intellectual disability) of functional communication were identified.
Conclusions
Removing the barriers and enabling functional communication is essential to developing the functional communication of adults with severe/profound intellectual disability.
Introduction
We examined the breadth of research on sex, sexuality, and sexual and reproductive health and rights with young people with intellectual disability in the past two decades.
Methods
An ...inclusive scoping approach focused on agency and resilience was used to review studies in English-speaking, high-income countries (2000–2019).
Results
In the 68 studies included, we found positive examples of sexual and reproductive agency across five key domains: 1) sexual development including sexual desire, identities, relationships, and menstruation, 2) sexual knowledge including sexuality education and sexual self-advocacy, 3) sexual activity and contraceptive use, 4) access to HPV immunization and cervical cancer screening, and 5) pregnancy, childbirth, and parenthood. The strongest factors in enabling agency were social support and sexuality education. However, several barriers including paternalist attitudes and infantilization of young people with intellectual disability affected all aspects of sexual expression, leading to the persistence of unfair and avoidable health inequities over the past two decades.
Conclusions
Ensuring young people with intellectual disability have a voice on all matters affecting their bodies, even if they have high support needs, is essential to promoting sexual and reproductive health and rights for all.
Policy Implications
Anti-ableist policies in sexual and reproduction health (e.g., education curriculum, service delivery) are key to moving forward.
The transition from primary to high school can be a challenging process for students with autism spectrum disorder (ASD). During this time, research-based practices like home-school collaboration are ...crucial in facilitating a smoother transition. However, existing research indicates that the transition from primary to high school is a period of anxiety and reduced support for students with ASD and their families. This article describes the experiences of parents of students with ASD in regard to this transition and home-school collaboration. Semi-structured interviews were carried out with 15 parents of children with ASD who attended mainstream government high schools in metropolitan Sydney. Through content analysis, parents were found to have received varying levels of transition support. Their experiences of home-school collaboration were, however, generally positive. Overall, it is recommended that parents' knowledge of their children with ASD should be prioritised and utilised in transition planning. Findings also suggest that a greater implementation of practices including mandated transition planning and home-school collaboration in schools would contribute to more authentic inclusion of students with ASD.
Student well-being has recently emerged as a critical educational agenda due to its wide-reaching benefits for students in performing better at school and later as adults. With the emergence of ...student well-being as a priority area in educational policy and practice, efforts to measure and monitor student well-being have increased, and so has the number of student well-being domains proposed. Presently, a lack of consensus exists about what domains are appropriate to investigate and understand student well-being, resulting in a fragmented body of work. This paper aims to clarify the construct of student well-being by summarising and mapping different conceptualisations, approaches used to measure, and domains that entail well-being. The search of multiple databases identified 33 studies published in academic journals between 1989 and 2020. There were four approaches to conceptualising student well-being found in the reviewed studies. They were: Hedonic, eudaimonic, integrative (i.e., combining both hedonic and eudaimonic), and others. Results identified eight overarching domains of student well-being: Positive emotion, (lack of) Negative emotion, Relationships, Engagement, Accomplishment, Purpose at school, Intrapersonal/Internal factors, and Contextual/External factors. Recommendations for further research are offered, including the need for more qualitative research on student well-being as perceived and experienced by students and for research to be conducted in a non-western context.
In recent years, student well-being is increasingly on the research agenda. Yet, little is known about the well-being of students with autism spectrum disorder (ASD). The current study used ...semi-structured interviews and sought the views of 20 high school teachers of students with ASD to investigate the concept of well-being for this group of students. Grounded theory approaches were used to analyse the data. Teachers conceptualised well-being as consisting of three domains (i.e., peer relationships, sense of safety, engagement), identified three categories of barriers (i.e., teacher’s ability to effectively teach students with ASD, impact of ASD, environment), and several external and internal assets of well-being. Discussion on recommended practices for schools to enhance the well-being of students with ASD are provided.
