Researching belonging in the context of research with people with intellectual disabilities: A systematic review of inclusive approaches.

BACKGROUND: In disability studies belonging is emerging as a promising area of study. Inclusive research, based as it is on lived experience perspectives, is likely to provide salient insights into belonging in the lives of people with intellectual disabilities. METHOD: A systematic review utilising four databases and five leading journals in the field of intellectual disabilities was used. Content analysis and a deductive synthesis of the extracted data was undertaken. RESULTS: A high level of confluence was found between the findings of the included studies and key themes of belonging identified in the wider literature. Beyond this, studies utilising inclusive research approaches have contributed novel findings about belonging in the lives of people with intellectual disabilities. CONCLUSIONS: Inclusive research approaches to belonging may provide innovative and responsive frameworks to support people to develop a sense of being connected and "at home" in themselves and in their communities.

Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review.

OBJECTIVE: To identify factors acting as barriers or enablers to the process of healthcare consent for people with intellectual disability and to understand how to make this process equitable and accessible. DATA SOURCES: Databases: Embase, MEDLINE, PsychINFO, PubMed, SCOPUS, Web of Science and CINAHL. Additional articles were obtained from an ancestral search and hand-searching three journals. ELIGIBILITY CRITERIA: Peer-reviewed original research about the consent process for healthcare interventions, published after 1990, involving adult participants with intellectual disability. SYNTHESIS OF RESULTS: Inductive thematic analysis was used to identify factors affecting informed consent. The findings were reviewed by co-researchers with intellectual disability to ensure they reflected lived experiences, and an easy read summary was created. RESULTS: Twenty-three studies were included (1999 to 2020), with a mix of qualitative (n=14), quantitative (n=6) and mixed-methods (n=3) studies. Participant numbers ranged from 9 to 604 people (median 21) and included people with intellectual disability, health professionals, carers and support people, and others working with people with intellectual disability. Six themes were identified: (1) health professionals' attitudes and lack of education, (2) inadequate accessible health information, (3) involvement of support people, (4) systemic constraints, (5) person-centred informed consent and (6) effective communication between health professionals and patients. Themes were barriers (themes 1, 2 and 4), enablers (themes 5 and 6) or both (theme 3). CONCLUSIONS: Multiple reasons contribute to poor consent practices for people with intellectual disability in current health systems. Recommendations include addressing health professionals' attitudes and lack of education in informed consent with clinician training, the co-production of accessible information resources and further inclusive research into informed consent for people with intellectual disability. PROSPERO REGISTRATION: CRD42021290548.

Scoping review on communication systems used by adults with severe/profound intellectual disability for functional communication.

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.

Codesigning a social prescribing pathway to address the social determinant of health concerns of children with cerebral palsy and their families in Australia: a protocol for a mixed-methods formative research study.

INTRODUCTION: Social determinants of health (SDH) are contributors to health inequities experienced by some children with cerebral palsy and pose barriers to families engaging with complex and fragmented healthcare systems. There is emerging evidence to support 'social prescribing' interventions that systematically identify SDH concerns and refer patients to non-medical social care support and services to address their needs. To date, social prescribing has not been trialled specifically for children with neurodevelopmental disabilities, including cerebral palsy, in Australia. This study aims to codesign a social prescribing programme to address SDH concerns of children with cerebral palsy and their families who attend one of the three tertiary paediatric rehabilitation services in New South Wales, Australia. METHODS AND ANALYSIS: This is a qualitative multi-site study conducted at the three NSW paediatric hospitals' rehabilitation departments using a codesign approach. Children aged 12-18 years with cerebral palsy, parents/caregivers of children (aged 0-18 years) with cerebral palsy, and clinicians will be involved in all stages to codesign the social prescribing programme. The study will consist of three components: (1) 'what we need', (2) 'creating the pathways' and (3) 'finalising and sign off'. This project is overseen by two advisory groups: one group of young adults with cerebral palsy and one group of parents of young people with cerebral palsy. The study will be guided by the biopsychosocial ecological framework, and analysis will follow Braun and Clark's thematic approach. ETHICS AND DISSEMINATION: The study protocol was approved by the human research ethics committee of the Sydney Children's Hospitals Network. This codesign study will inform a future pilot study of feasibility and acceptability, then if indicated, a pilot clinical trial of efficacy. We will collaborate with all project stakeholders to disseminate findings and undertake further research to build sustainable and scalable models of care. TRIAL REGISTRATION NUMBER: ACTRN12622001459718.

"I am not a number!" Opinions and preferences of people with intellectual disability about genetic healthcare.

There is limited research exploring the knowledge and experiences of genetic healthcare from the perspective of people with intellectual disability. This study, conducted in New South Wales (Australia), addresses this gap. Eighteen adults with intellectual disability and eight support people were interviewed in this inclusive research study. The transcribed interviews were analysed using inductive content analysis. The findings were discussed in a focus group with ten adults with intellectual disability and in three multi-stakeholder advisory workshops, contributing to the validity and trustworthiness of the findings. Five main themes emerged: (i) access to genetic healthcare services is inequitable, with several barriers to the informed consent process; (ii) the experiences and opinions of people with intellectual disability are variable, including frustration, exclusion and fear; (iii) genetic counselling and diagnoses can be profoundly impactful, but translating a genetic diagnosis into tailored healthcare, appropriate support, peer connections and reproductive planning faces barriers; (iv) people with intellectual disability have a high incidence of exposure to trauma and some reported that their genetic healthcare experiences were associated with further trauma; (v) recommendations for a more respectful and inclusive model of genetic healthcare. Co-designed point-of-care educational and consent resources, accompanied by tailored professional education for healthcare providers, are required to improve the equity and appropriateness of genetic healthcare for people with intellectual disability.

What Constitutes Student Well-Being: A Scoping Review Of Students' Perspectives.

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.

Supporting students with complex needs living in rural and regional New South Wales: is wraparound the answer?

Historically, students attending school in rural and regional New South Wales have experienced poorer outcomes than their peers attending metropolitan schools. The lack of coordinated support services for students with complex support needs compounds this issue. Wraparound models of support have been successful in improving outcomes for students with complex support needs, and the New South Wales government has prioritised the establishment of strong relationships between schools and communities to overcome the limitations of geographic isolation. The aim of the current study was to explore wraparound support for students with complex support needs attending schools in rural and regional New South Wales. A qualitative research approach was employed, and semi-structured interviews were conducted with key stakeholders to gain an in-depth understanding of current successes, barriers, and needs. The findings indicated that wraparound was most effective in rural and remote schools when school staff implemented bespoke approaches to wraparound, such as restorative practices. Resourcing was a barrier found to be central to all schools. Recommendations are provided to enhance the capacity of rural and regional NSW schools to provide wraparound support for students with complex support needs.

The opinions and experiences of people with intellectual disability regarding genetic testing and genetic medicine: A systematic review.

PURPOSE: Genetic testing is frequently conducted on people with intellectual disability. This systematic literature review sought to assess what research has been conducted with people with intellectual disability to investigate their opinions and experiences of genetic counselling and testing. METHODS: A search of 5 online databases (from year of database creation to 2021) yielded 1162 articles. Seven articles met the inclusion criteria. We assessed the quality, accessibility, and inclusivity of each study and extracted the data. Deductive content analysis was performed. RESULTS: Most study participants showed both the desire and the capability to learn more about genetic conditions and genetic tests. Participants expressed a wide variety of opinions about genetic tests, similar to the range of opinions of the general population. All studies were small and were from a limited number of countries, and analysis showed limited evidence of inclusivity or accessibility. CONCLUSION: This review highlights major gaps in the understanding of the opinions, experiences, and preferences of people with intellectual disability regarding genetic counselling and testing. There is urgent need for research to codesign a more inclusive genomic model of care to address this failure in health care accessibility and equity.

Co-Design of a Neurodevelopment Assessment Scale: A Study Protocol.

Neurodevelopmental disorders are a heterogeneous group of conditions with overlapping symptomatology and fluctuating developmental trajectories that transcend current diagnostic categorisation. There is a need for validated screening instruments which dimensionally assess symptomatology from a holistic, transdiagnostic perspective. The primary aim is to co-design a Neurodevelopment Assessment Scale (NAS), a user-friendly transdiagnostic assessment inventory that systematically screens for all signs and symptoms commonly encountered in neurodevelopmental disorders. Our first objective is to undertake development of this tool, utilising co-design principles in partnership with stakeholders, including both those with lived experience of neurodevelopmental disorders and service providers. Our second objective is to evaluate the face validity, as well as the perceived utility, user-friendliness, suitability, and acceptability (i.e., 'social validity'), of the NAS from the perspective of parents/caregivers and adults with neurodevelopmental disorders, clinicians, and service providers. Our third objective is to ascertain the psychometric properties of the NAS, including content validity and convergent validity. The NAS will provide an efficient transdiagnostic tool for evaluating all relevant signs, symptoms, and the dimensional constructs that underpin neurodevelopmental presentations. It is anticipated that this will maximise outcomes by enabling the delivery of personalised care tailored to an individual's unique profile in a holistic and efficient manner.

Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol.

INTRODUCTION: Children and young people with intellectual disability represent one of the most vulnerable groups in healthcare, yet they remain under-represented in projects to design, develop and/or improve healthcare service delivery. Increasingly, healthcare services are using various codesign and coproduction methodologies to engage children and young people in service delivery improvements. METHODS AND ANALYSIS: This study employs an inclusive approach to the study design and execution, including two co-researchers who are young people with intellectual disability on the project team. We will follow an adapted experience-based co-design methodology to enable children and young people with intellectual disability to participate fully in the co-design of a prototype tool for eliciting patient experience data from children and young people with intellectual disability in hospital. ETHICS AND DISSEMINATION: This study was granted ethical approval on 1 February 2021 by the Sydney Children's Hospitals Network Human Research Ethics Committee, reference number 2020/ETH02898. Dissemination plan includes publications, doctoral thesis chapter, educational videos. A summary of findings will be shared with all participants and presented at the organisation quality and safety committee.

The role of mobile technology in promoting social inclusion among adults with intellectual disabilities.

BACKGROUND: Mobile technology has the potential to assist adults with intellectual disabilities to initiate and maintain social connections in important areas of their lives, such as family, friends and work/volunteering. METHOD: The present study investigated how specific aspects of mobile device/app use are associated with the social inclusion of people with intellectual disabilities. The study also examined what background attributes were associated with particular patterns of mobile device/app use and social inclusion. RESULTS: The findings revealed that the use of mobile technology among adults with intellectual disabilities was positively associated with their social inclusion with family, friends and work/volunteering. There were also some key background attributes associated with participants' use of mobile technology and the extent to which mobile technology assisted their social inclusion. CONCLUSIONS: Implications for practice and policy are discussed.

Is it really student-focused planning? Perspectives of students with autism.

BACKGROUND: Student-focused planning has emerged as a primary indicator of post-school success. However, without mandated policies or procedures in place for transition planning in Australia, students with autism will continue to be minimally engaged or completely disengaged from the transition planning process in schools. This is likely to significantly impact post-school outcomes for these students. While previous studies have investigated the extent of student involvement in their IEP transition planning meetings, none of these studies considered the views of students with autism, despite research suggesting that children are experts of their own experiences and their own lives. AIM: The aim of the current study was to determine how involved students with autism were in the transition planning process. METHOD AND PROCEDURES: Interviews were conducted with 18 students with autism aged 15-18 years. Interviews were analysed using inductive content analysis. OUTCOMES AND RESULTS: The results revealed that students lacked knowledge of the transition planning process, however many students expressed the desire to be significantly involved in the process. The majority of students reported that they only contributed minimally during meetings. Numerous students reported being unaware of existing transition practices (i.e., work experience opportunities) that were in place for them. CONCLUSIONS AND IMPLICATIONS: There is an urgent need for transition planning to be mandated in Australia to allow students with disabilities to receive appropriate support in school (i.e., schools and teachers should actively advocate person-centered planning and support students to develop self-determination skills).

The impact of self-advocacy organizations on the subjective well-being of people with intellectual disabilities: A systematic review of the literature.

BACKGROUND: A high sense of subjective well-being has been associated with more prosocial behaviours, better health, work productivity and positive relationships. The aim of this systematic review was to explore what impact self-advocacy has on the subjective well-being of people with intellectual disabilities. METHOD: The authors reviewed articles focusing on the perspectives of adults with intellectual disabilities engaged with self-advocacy groups. Searches were performed in PsychINFO, Web of Science, SCOPUS, MEDLINE and CIHNL databases, resulting in 16 articles meeting the inclusion criteria. A framework synthesis approach was used to extract data deductively based on the Dynamic Model of Wellbeing. RESULTS: While self-advocacy has a positive impact on all domains of the Dynamic Model of Wellbeing, negative impacts associated with participation in a self-advocacy group were also reported. CONCLUSIONS: The benefits of participating in self-advocacy groups on the well-being of individuals with intellectual disabilities outweigh the disadvantages.

"They don't have a good life if we keep thinking that they're doing it on purpose!": Teachers' Perspectives on the Well-Being of Students with Autism.

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.

Picture my well-being: Listening to the voices of students with autism spectrum disorder.

BACKGROUND: Student well-being, though widely researched, continues to be a poorly defined concept. Few student well-being studies focus on students with autism spectrum disorder (ASD), who may have a poorer sense of well-being compared to typically developing students. AIMS: The current study aims to explore the conceptualisation, barriers, and ways to enhance the well-being of students with ASD from their perspectives. METHODS AND PROCEDURES: Photovoice, a participatory research method was used to elicit the views of 16 high school students with ASD to explore the concept of well-being. Data analysis was conducted using a grounded theory approach. OUTCOMES AND RESULTS: Students conceptualised well-being as multidimensional, identified sensory barriers, social barriers, and barriers that were associated with learning, and several external and internal assets that could support their well-being. CONCLUSIONS AND IMPLICATIONS: To promote well-being, barriers should be mitigated, while external and internal assets developed. Researchers should also consider the use of Photovoice to enable students' meaningful participation in research studies.

Parents with intellectual disabilities and their perspective of peer support: "It depends on how they give it".

BACKGROUND: Parents with intellectual disabilities face particular challenges, such as lack of sufficient support with their parenting. Peers can be an important source of support for parents in the general population; however, there is a limited knowledge about peer support for parents with intellectual disabilities. The aim of this study was to explore experiences of parents with intellectual disabilities with social support with a focus on the role of peers. METHOD: Twenty-six parents with intellectual disabilities in New South Wales, Australia, took part in a semi-structured interview. RESULTS: The inductive content analysis of data revealed three main themes; this article reports on one of them-Developing interdependence. CONCLUSIONS: The source of support was less important than the way support was offered. Parents valued support offered by someone who respected them as a person and parent, and was interested in what they wanted and needed.

A systematic review of the involvement of students with autism spectrum disorder in the transition planning process: Need for voice and empowerment.

BACKGROUND: Students with autism spectrum disorder (ASD) typically struggle with post-school employment, post-secondary education, and independent living outcomes. This may be due to their limited input on the goals that are set for their future during the transition planning process. AIM: The aim of this systematic review was to investigate the extent of involvement of students in their IEP transition planning meetings in published research on the topic to date. METHOD AND PROCEDURES: The authors reviewed articles published between 1994 and 2016. Searches were performed in ERIC, ProQuest Education Journals, PsycINFO, and Scopus databases, resulting in 15 articles meeting the inclusion criteria. OUTCOMES AND RESULTS: Out of the 15 articles included in this review, five were survey research articles and ten were intervention studies. The overall results of the studies revealed that students with ASD had minimal active involvement in the transition planning process. CONCLUSIONS AND IMPLICATIONS: It is essential for teachers to educate students about the transition planning process to increase their awareness of the purposes and procedures of the transition planning meeting. There is a pressing need for a more student-centred approach in transition planning to empower students and support them in becoming better self-advocates.

" but if you're afraid of things, how are you meant to belong?" What belonging means to people with intellectual disabilities?

BACKGROUND: A policy commitment to social inclusion has brought about some positive changes in the lives of people with intellectual disabilities; yet many also continue to experience social isolation, poverty and abuse. The authors introduce a framework for belonging from the literature and then present a study exploring the views of people with intellectual disabilities about belonging. These are discussed in relation to the framework identified from the literature. METHOD: Three focus groups with 24 participants with intellectual disabilities were conducted in New South Wales and Victoria (Australia). The authors used inductive content analysis to identify four meanings of belonging: (i) belonging in relation to place, (ii) as being part of a community, (iii) as having relationships and (iv) as identity. Also discussed are commonly experienced barriers to belonging identified by participants. CONCLUSIONS: Implications for policy, service provision and practice are discussed.

Peer-reviewed articles on inclusive research: Do co-researchers with intellectual disabilities have a voice?

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.