The role of people with intellectual disability in intellectual disability research: A systematic review of Delphi studies.

BACKGROUND: The way intellectual disability research is designed warrants critical examination, as the knowledge produced through these approaches informs evidence-based practices. People with lived experience should be considered experts in relation to understanding their bodies, conditions, and treatment. METHOD: This systematic review analyses the design of Delphi studies, to determine the extent to which people with intellectual disability are involved as experts. The design of Delphi studies (involving structured feedback from experts) provides an insight into the extent that 'lived experience' is valued as a source of expert knowledge. RESULTS: Fifty-five publications reporting on forty-nine separate Delphi studies met our inclusion criteria. Nine publications report the involvement of people with intellectual disability. However, family/informal caregivers are represented as experts in higher numbers and their voices carry greater weight. CONCLUSION: The findings of this review include guidance for practitioners and researchers to facilitate greater participatory roles of people with intellectual disability.

Supporting occupational therapists to initiate conversations about sexuality with people with intellectual disability: Co-design by deliberative dialogue.

INTRODUCTION: Occupational therapists routinely report low levels of confidence in addressing needs related to sexuality and intimacy. These issues are compounded when supporting clients with intellectual disability, due to prevailing assumptions about capacity and few practical support resources. At a disciplinary level, there is ongoing discourse around how to best conceptualise and support sexual and gender identities generally, within models of human occupation. Leveraging interdisciplinarity, where sexuality overlaps as a sphere of interest, can aid the development of practical support resources. Engagement with sociology (focussed on relationality) and disability studies (focussed on embodiment) offers a generative path forward. METHODS: The deliberative dialogues framework was used to develop a co-designed resource by occupational therapists for occupational therapists. Six Australian occupational therapists with experience working with clients with intellectual disability and/or sexuality were purposively recruited to participate in co-design groups. Using the eight features of deliberative dialogue, data was collected and analysed by an interdisciplinary research team to collaboratively produce a practical support resource. RESULTS: Participants agreed the greatest need was to develop a resource for clinicians, to support conversations with clients about sexuality. Five key themes emerged: (1) Theoretical explanations addressing why sexuality is important must be paired with practical advice; (2) make a conversational call to action from 'OTs' for 'OTs' by locating sexuality within the domain of occupational therapy; (3) make explicit that people with intellectual disability are sexual beings; (4) need for self-reflection; and (5) demonstrate how existing understandings of occupation apply to sexuality. CONCLUSION: A resource in the form of a brochure was developed, intended to be used as a conversation primer. The process used to develop the resource demonstrated the value of interdisciplinary collaboration and the utility of deliberative dialogue as a co-design method.

Kicking goals: Exploring the experiences of girls who play Australian Rules football.

ISSUE ADDRESSED: Increasing physical activity of adolescent girls is a key priority for health promotion, as their physical activity levels are generally lower than boys. This study aims to understand the experiences of adolescent girls who play Australian Football League Women's (AFLW) football and to explore girls' pathways to playing football. Understanding how AFLW and gender norms/stereotypes influence girls' experiences and self-perceptions was a key focus. METHODS: A qualitative description design and purposive sampling were used. Six adolescent girls aged 11-17 that play football in urban Victoria, Australia participated. Short interview survey questions covering demographic and football pathway information were administered prior to online one-on-one interviews. Interviews lasted 30-45 minutes. Questions were framed broadly, open-ended and non-directive (some using image prompts). Data were analysed using thematic analysis. RESULTS: The results cover four themes: (a) Self-perception-participants presented with positive self-perceptions, (b) Social support-a supportive team and exposure to women playing football, and family support/involvement, were encouraging factors in pathways to playing football, (c) AFLW role models-were positive influences on participants' experience and self-perceptions and (d) Influence of gender norms/stereotypes-participant self-perceptions displayed conforming and non-conforming features of gender norms/stereotypes. Participants reported exposure to sexist commentary about girls in sport through social media and peers but instead of being discouraged, most used it as motivation or empowerment, while others were dismissive. CONCLUSIONS: Findings suggest increased media coverage of AFLW players may be beneficial. Education programs/initiatives which i) involve AFLW role models and ii) encourage family friendly club environments and team bonding spaces are recommended. SO WHAT?: Findings indicate that adolescent girls can thrive in their football experience, which could increase feelings of empowerment and foster positive self-perceptions, contributing to overall health. Further research in this area is recommended to expand on and strengthen our study findings.

Starting with us: Imagining relational, co-designed policy approaches to improve healthcare access for rural people with disability.

CONTEXT: Access to healthcare for rural Australians is a wicked problem, particularly for rural people with disability. Contemporary healthcare access frameworks in Australia tend to overlook geography, use a 'one-size-fits-all approach', and disregard the valuable relationships between key rural healthcare stakeholders, including rural people with disability, rural health services and health professionals. The United Nation's Convention on the Rights of Persons with Disabilities requires the Australian Government to engage people with disability in the design of policies that will shape their day-to-day lives, including their access to healthcare. However, the nature and extent to which rural people with disability, rural health professionals and other key rural stakeholders are involved in the design of Australian policies impacting the health of rural people with disability are unknown. AIM: This paper examines approaches taken to engage rural people with disability and health professionals in the design of Australian disability policy impacting healthcare access, and reimagines future processes which can improve healthcare access for rural people with disability. APPROACH: Co-design and ethics of care lenses are applied to policy design approaches in this paper. We approach this work as rural disability and health academics, rural health professionals, and as rural people with disability, neurodivergence and family members of people with disability. CONCLUSION: We argue future co-designed policy approaches could focus on driving change towards equity in healthcare access for rural people with disability by harnessing the relational nature of rural healthcare.

Access to Sexual Health Services and Support for People with Intellectual and Developmental Disabilities: an Australian Cross-sector Survey.

Introduction: People with intellectual and developmental disabilities under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) have the right to access sexual health services including information, education, and support. Little is known about the capacity of sexual health professionals to provide these services. Methods: Using an observational research design, this study utilised a descriptive survey tool (PASH-Ext) that also encompassed a standardised measure, with a cross-sectional purposive sample of 52 Australian sexual health professionals. Data was collected in 2020. Results: Just over half of the participants reported having received training in their preservice education to work with people with intellectual and developmental disabilities, of these 60% held the view that people with intellectual and developmental disabilities would not feel embarrassed receiving sexual health information and support. Conclusion: The study found that training is both important to the professionals' preparedness to work with people with intellectual and developmental disabilities, and that these professionals advocate for the continuation of this training in pre-service courses and additional training in post service education for sexual health workers. Policy Implications: To progressively realise Article 25 of the UNCRPD signatory, countries need to ensure sexual health services are accessible to people with intellectual and developmental disabilities. This study recommends that sexual health policy addresses equity of access for people with intellectual and developmental disability by ensuring all staff are prepared and supported to provide these services.

Experiences of LGBTIQA+ People with Disability in Healthcare and Community Services: Towards Embracing Multiple Identities.

Healthcare and disability support services are increasing their efforts towards inclusion and recognising the needs of different groups. This research project was conducted by academic and peer researchers (LGBTIQA+ people with disability) in Victoria, Australia using four focus groups with LGBTIQA+ people with disability. We report on two overarching themes relating to participants' experiences of accessing health services as LGBTIQA+ people with disability: difficulties in managing multiple identities and the impacts of community services and supports. Participants described having to repeatedly 'come out' in a range of ways and contexts as complex and layered processes in which it was difficult to present their full range of needs and experiences to services. We also found that the role of community in promoting a sense of belonging and resilience increased capacity to manage health service use and advocacy. Services and communities aiming to be inclusive to all have the opportunity to recognise and respond to the issues faced by LGBTIQA+ people with disability as a way to pay attention to how overt and subtle practices of discrimination continue to operate despite repeated attempts at or claims of being 'inclusive.' Our research suggests actual inclusive, accessible services can be achieved in part through policy and practice that actively responds to the specific needs of LGBTIQA+ people with disability, in addition to LGBTIQA+ education for disability services and disability and accessibility education for LGBTIQA+ focused services. As we do in this article, we argue that this work must be done by prioritising authentic participation of LGBTIQA+ people with disability in the services and research that is about them.