Development of a new social prescribing intervention for families of children with cerebral palsy.

AIM: To co-design a social prescribing intervention (the EPIC-CP programme: Equitable Pathways and Integrated Care in Cerebral Palsy) with children with cerebral palsy (CP), their families, and clinicians to address unmet social needs. METHOD: The study was conducted (August 2021 to March 2023) at the paediatric rehabilitation departments of the three tertiary paediatric hospitals in New South Wales, Australia. Eligible participants attended or worked at one of the departments, including children with CP, parents/caregivers, and clinicians. Mixed-methods co-design was used in intervention co-production and prototyping. The project was overseen by research advisors with lived experience of CP. RESULTS: More than 200 participants contributed to the co-design research. Families experienced a substantial burden of unmet social needs. Co-designed interventions involved systematic identification of unmet social needs with (1) targeted community resources and (2) engagement with a 'community linker' who supported children/young people and their families to access health, education, and social services that matched their identified needs and preferences. Research participants co-developed the programme logic model and prototype. This was piloted in research action cycles and iteratively refined until consensus was achieved. INTERPRETATION: We co-designed a social prescribing programme responsive to the needs of its end-users and purposefully developed to be embedded in the Australian health setting. A pilot randomized controlled trial will further evaluate this intervention.

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.

Developing the self-determination of children and young people with intellectual disabilities in schools: A systematic review of the literature.

BACKGROUND: Self-determination is associated with lifelong positive outcomes. Students with intellectual disabilities typically have lower self-determination than their peers. Universal basic education access offers schools the opportunity to rectify this disparity. This is the first systematic review investigating the school-based practices that target self-determination development for students with intellectual disabilities. METHOD: The review follows the PRISMA guidelines, spanning five databases (ProQuest databases, EMBASE, Scopus, Sage Journals, Taylor and Francis Online) from 2006 to 2021. RESULTS: Across the 18 studies, the most used practice is the SDLMI. Research focuses on United States-based transition-aged students with mild to moderate intellectual disabilities. Social validity tends to be assessed in summative and informal ways. Students are not generally involved in decision-making about practices and individualisation of support. CONCLUSIONS: Self-determination development for this population can begin before puberty. Future research should critically investigate social validity and holistic integration of student self-determination learning opportunities throughout the pedagogical cycle.

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.

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.

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 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.

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.

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.

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.

The added value of inclusive research.

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.

" 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.

Good Enough Support? Exploring the Attitudes, Knowledge and Experiences of Practitioners in Social Services and Child Welfare Working with Mothers with Intellectual Disability.

BACKGROUND: This study examined the attitudes, knowledge and experiences of practitioners in social services and child welfare working with mothers with intellectual disability. METHOD: The authors used a national survey, which was completed by 329 participants. Descriptive statistics and frequency tables were generated, and the associations between variables and differences between various subgroups of the sample were made. The open questions were analysed using the processes involved in content analysis. RESULTS: The findings indicated that the participants had limited knowledge of available supports and services for mothers with intellectual disability. Furthermore, many participants believed that mothers with intellectual disability should have an abortion should they become pregnant. The findings show practitioners' stereotyped attitudes towards mothers with intellectual disability. CONCLUSIONS: Workers in the area of social services and child welfare need access to training and professional development in the area of supporting mothers with intellectual disability.

Building an inclusive research team: the importance of team building and skills training.

BACKGROUND: Inclusive research teams typically describe their experiences and analyse the type of involvement of researchers with disability, but the process of building research teams and the need for research training still remain underexplored in the literature. MATERIALS AND METHOD: Four researchers with intellectual disabilities and four academic researchers developed an inclusive research team. The team conducted 15 research training sessions, focused on investigating the well-being of older women with intellectual disabilities. They used mobile technology to support research skills acquisition. RESULTS: Findings included the experiences of all team members regarding the team building during training. CONCLUSIONS: To become an effective inclusive research team, all team members, regardless of ability, need to bring their own experiences and also learn necessary research skills. This paper highlights the need for team building, joint research training among all members of the research team and strategies supporting the peer-mentoring within the team. We are a team of four researchers with intellectual disabilities and four academic researchers without an intellectual disability. Our aim has been to learn about research together. We want to do this so that we can carry out a research project together about how older women with intellectual disabilities live. We have decided to call our team 'Welcome to our Class'. We have been working together for 9 months. In this time we have had 15 research training meetings. We have learned What research is How to work out a research question, that is what we want to find out about How to get information on what we want to find out. Here we thought of interview questions we could ask older women with intellectual disabilities. We are now meeting once a month, and have just begun our research on finding out how older women with intellectual disabilities live. We are now starting to use what we have learned.

"I Thought It Was Better to Be Safe Than Sorry": Factors Influencing Parental Decisions on HPV and Other Adolescent Vaccinations for Students with Intellectual Disability and/or Autism in New South Wales, Australia.

The uptake of human papilloma virus (HPV) and other adolescent vaccinations in special schools for young people with disability is significantly lower than in mainstream settings. This study explored the factors believed to influence parental decision making regarding vaccine uptake for students with intellectual disability and/or on the autism spectrum attending special schools in New South Wales, Australia, from the perspective of all stakeholders involved in the program. Focus groups and interviews were conducted with 40 participants, including parents, school staff, and immunisation providers. The thematic analysis identified two themes: (1) appreciating diverse parental attitudes towards vaccination and (2) educating parents and managing vaccination questions and concerns. While most parents were described as pro-vaccination, others were anti-vaccination or vaccination-hesitant, articulating a marked protectiveness regarding their child's health. Reasons for vaccine hesitancy included beliefs that vaccines cause autism, concerns that the vaccination may be traumatic for the child, vaccination fatigue following COVID-19, and assumptions that children with disability will not be sexually active. Special school staff regarded the vaccination information pack as inadequate for families, and nurses described limited educational impact resulting from minimal direct communication with parents. More effective communication strategies are needed to address vaccine hesitancy among parents with children with disability.

Cervical screening participation and access facilitators and barriers for people with intellectual disability: a systematic review and meta-analysis.

Background: The World Health Organisation's vision of eliminating cervical cancer as a public health problem is achievable, but elimination must be achieved equitably, including for people with intellectual disability. A better understanding of cervical screening within the context of the lives of people with intellectual disability is needed. This study systematically reviewed research on the rates of cervical screening participation among people with intellectual disability, and facilitators and barriers that affect participation. Method: Six electronic databases were systematically searched: MEDLINE, CINAHL, Scopus, PsycINFO, Embase and Pro-Quest Central Social Sciences Collection. Empirical studies published between 1986 and 2023, in English language peer-reviewed journals were eligible for inclusion. Further articles were identified through forward and backward citation tracking, and hand-searching the index lists of two key journals. Two authors screened the studies, extracted the data and collated study outcomes using a standardised software program. A meta-analysis was performed using the DerSimonian and Laird method to estimate pooled effect sizes in prevalence rates and odds ratios (ORs). The socio-ecological model (SEM) was used as a framework to thematically analyse facilitators and barriers impacting participation in cervical screening. Results: Sixty-three articles met the inclusion criteria. Of these, 42 reported on rates of cervical screening participation and 24 reported on facilitators or barriers to cervical screening for people with intellectual disability. Overall, the studies reported a screening prevalence of 35% (95% CI: 26% to 45%), indicating that just over a third of people with intellectual disability have had cervical screening. The pooled odds ratio of 0.30 (95% CI: 0.23 to 0.41) indicated that people with intellectual disability are significantly less likely to have a cervical screening test compared with people without intellectual disability. Most studies examined individual and interpersonal factors impacting cervical screening. These included: (i) fear and anxiety among people with intellectual disability, (ii) misassumptions preventing screening participation, (iii) the role of support people, (iv) the need for education, (v) accessible information, and time to prepare for screening, (vi) patient-provider communication including challenges obtaining informed consent, and (vii) healthcare provider lack of confidence. Conclusion: Future research, policy and practice efforts must address barriers to cervical screening participation among people with intellectual disability and ensure these efforts are co-produced and community-led. This is critical to ensuring equity in global and local efforts to eliminate cervical cancer.

Working together with people with intellectual disability to make a difference: a protocol for a mixed-method co-production study to address inequities in cervical screening participation.

Introduction: Cervical cancer is one of the most preventable cancers yet remains a disease of inequity for people with intellectual disability, in part due to low screening rates. The ScreenEQUAL project will use an integrated knowledge translation (iKT) model to co-produce and evaluate accessible cervical screening resources with and for this group. Methods: Stage 1 will qualitatively explore facilitators and barriers to screening participation for people with intellectual disability, families and support people, healthcare providers and disability sector stakeholders (n ≈ 20 in each group). An accessible multimodal screening resource, accompanying supporting materials for families and support people, and trauma-informed healthcare provider training materials will then be co-produced through a series of workshops. Stage 2 will recruit people with intellectual disability aged 25 to 74 who are due or overdue for screening into a single-arm trial (n = 48). Trained support people will provide them with the co-produced resource in accessible workshops (intervention) and support them in completing pre-post questions to assess informed decision-making. A subset will participate in qualitative post-intervention interviews including optional body-mapping (n ≈ 20). Screening uptake in the 9-months following the intervention will be measured through data linkage. Family members and support people (n = 48) and healthcare providers (n = 433) will be recruited into single-arm sub-studies. Over a 4-month period they will, respectively, receive the accompanying supporting materials, and the trauma-informed training materials. Both groups will complete pre-post online surveys. A subset of each group (n ≈ 20) will be invited to participate in post-intervention semi-structured interviews. Outcomes and analysis: Our primary outcome is a change in informed decision-making by people with intellectual disability across the domains of knowledge, attitudes, and screening intention. Secondary outcomes include: (i) uptake of screening in the 9-months following the intervention workshops, (ii) changes in health literacy, attitudes and self-efficacy of family members and support people, and (iii) changes in knowledge, attitudes, self-efficacy and preparedness of screening providers. Each participant group will evaluate acceptability, feasibility and usability of the resources. Discussion: If found to be effective and acceptable, the co-produced cervical screening resources and training materials will be made freely available through the ScreenEQUAL website to support national, and potentially international, scale-up.

EPIC-CP pilot trial study protocol: a multicentre, randomised controlled trial investigating the feasibility and acceptability of social prescribing for Australian children with cerebral palsy.

INTRODUCTION: The social determinants of health contribute to poorer health outcomes for children with cerebral palsy (CP) and are barriers to families accessing health services. At an individual level, social determinants of health are experienced as unmet social needs, for example, unsafe housing conditions. There is emerging evidence that clinical pathways for the systematic identification and referral to services for unmet social needs can support families to address these needs. These clinical pathways have not been implemented for children with CP. The objectives are to investigate the feasibility and acceptability of two co-designed social needs clinical pathways for parents/caregivers of children with CP-social prescribing (ie, Community Linker plus resource pack) compared with resource pack only. METHODS AND ANALYSIS: This pilot randomised controlled trial will run at the three tertiary paediatric rehabilitation services in New South Wales, Australia. A total of 120 participants will be recruited, with randomisation stratified by study site. A survey tool will be used to identify families experiencing unmet social needs. Parents/caregivers who report one or more unmet social need/s and consent will be eligible. The active control group will receive a resource pack containing information on community services to support unmet social needs. The social prescribing intervention group will receive one-on-one Community Linker support, in addition to the resource pack. The survey tool, intervention, logic model, and resource pack were co-designed with patient families and their healthcare workers. Feasibility of the research design and the clinical pathways will be evaluated using the number/proportion of parents/caregivers who complete the survey tool, consent, engage with the intervention, and complete research measures. Acceptability will be evaluated using questionnaires and qualitative interviews. ETHICS AND DISSEMINATION: Human research ethics approval was granted by the Sydney Children's Hospitals Network Human Research Ethics Committee (2022/ETH01688). Participants and stakeholders will receive updates and findings via regular communication channels including meetings, presentations, and publications. TRIAL REGISTRATION NUMBER: Australia New Zealand Clinical Trials Registry: 12622001459718.

A qualitative study investigating the experiences of unmet social needs for children with cerebral palsy and their families: perspectives of parents and clinicians.

PURPOSE: To explore (i) the impact of unmet social needs on children with cerebral palsy and their families; (ii) enablers-, and (iii) barriers to addressing unmet social needs. MATERIAL AND METHODS: Eligible participants attended or worked at one of the three Paediatric Rehabilitation Departments including: children with a diagnosis of cerebral palsy; parents/carers; and clinicians. One-on-one interviews were conducted with parents/carers and focus groups with clinicians. Interview and focus group transcripts were deductively thematically analysed according to the social model of disability. RESULTS: A total of 44 participants (8 parents and 36 clinicians) took part. No children consented to participate. Analysis of the qualitative data identified four main themes and 14 sub-themes. The main themes were: Unmet social needs are pervasive; An inequitable health system with no roadmap; Everyone suffers as a result of unmet social needs; and It takes a village to raise a child. CONCLUSION: Unmet social needs have profound impacts on families. The experiences of unmet social needs are intensified by the extra complexities of raising a child with disability. Societal barriers including inequitable systems and the fragmented services are barriers impeding on families receiving support and ultimately limiting their wellbeing.

Many families experience a vicious cycle of disability, unmet social needs, and access ­ which service providers should thoughtfully consider when providing patient-centred care.For many families, a child's disability impacts their unmet social needs, which influences their access to services and has consequences on their disability and wellbeing.Addressing unmet social needs is a priority for all people working with families of children with cerebral palsy including health, social care, and education providers.Integrated health-social care models such as social prescribing have the potential to support families to address their unmet social needs and warrant consideration within rehabilitation care.

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.