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.

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.

"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.

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.