AUTHOR=Bateson Deborah , Ussher Jane , Strnadová Iva , Loblinzk Julie , David Michael , Chang Ee-Lin , Carter Allison , Sweeney Sally , Winkler Lauren , Power Rosalie , Basckin Caroline , Kennedy Elizabeth , Jolly Heather 

TITLE=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

JOURNAL=Frontiers in Public Health

VOLUME=12

YEAR=2024

URL=https://www.frontiersin.org/journals/public-health/articles/10.3389/fpubh.2024.1360447

DOI=10.3389/fpubh.2024.1360447

ISSN=2296-2565

ABSTRACT=<sec id="sec1"><title>Introduction</title><p>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.</p></sec><sec id="sec2"><title>Methods</title><p>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 (<italic>n</italic> ≈ 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 (<italic>n</italic> = 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 (<italic>n</italic> ≈ 20). Screening uptake in the 9-months following the intervention will be measured through data linkage. Family members and support people (<italic>n</italic> = 48) and healthcare providers (<italic>n</italic> = 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 (<italic>n</italic> ≈ 20) will be invited to participate in post-intervention semi-structured interviews.</p></sec><sec id="sec3"><title>Outcomes and analysis</title><p>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.</p></sec><sec id="sec4"><title>Discussion</title><p>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.</p></sec>