ScreenEQUAL: Informed Cervical Screening Participation for People with Intellectual Disability - Substudy for Family Members and Support People

This project aims to evaluate the effectiveness of materials for families and support people to support people with intellectual disability to undertake cervical screening, over a 4-month timeframe. Family members and supporters (paid and unpaid, n=48) will be invited into a single-arm pre-post study. After completing the pre-intervention online survey (via Redcap), they will be directed to the intervention materials on the ScreenEQUAL website. Specifically, families and support people will receive an email generated through Redcap with a link to the intervention website together with lay information about how to use and navigate the intervention website. The intervention materials comprise: (1) The Cervical Screening Test - Easy Read Booklet (explaining what the test is, how it can be done, and what happens during the test); (2) three social stories about people with intellectual disabilities' experiences of the Cervical Screening Test (Before My Cervical Screening Test, During My Cervical Screening Test, After My Cervical Screening Test); (3) a resource toolkit for support people: an "All About Me" introducing the person with intellectual disability to their healthcare providers, a conversation planning template, and a tool for family members and support people to support people with intellectual disability about the Cervical Screening Test; and (4) three videos depicting a person with intellectual disability getting a letter about the Cervical Screening Test (2min), talking to a doctor about her options (6min), and talking to a doctor about what happens after the test (4min). There is no formal training/modules or fixed frequency/schedule; participants are able to go through the resources at their own pace during the four month exposure period (intervention duration). These intervention materials were co-designed specifically for this study by the project team, partner organisations and people with intellectual disability in an earlier stage of the ScreenEQUAL project, and they can be accessed on the project website: https://screenequal.org.au/information-library/. All interventions materials for families and support people have been reviewed and approved by the University of Sydney HREC and will be housed and delivered using an intervention website, purpose built and hosted by the University of Sydney. To optimise families and support people's familiarization with intervention materials and to help navigate through the intervention website, the website will include brief informational videos, co-produced by Family Planning Australia. Families and support people will also receive up to 4 automated text-messages, delivered once a month, for 4-months, using professional and encrypted paid text-messaging software (e.g. ClickSend: https://www.clicksend.com/au/) to maintain their engagement over the 4-month intervention period. Intervention text-messages will include an initial welcome message to participants within 1-week of receiving access to the intervention website (message 1), a summary of key highlights of the intervention materials including the informational videos (message 2), a reminder about their upcoming post-intervention survey invitation (message 3) and an end of intervention thank you message at the end of the intervention (4-months after receiving access to the intervention website). Fidelity will be assessed in the post-intervention survey, through participants' self-report of the videos/resources they watched/read, supplemented by website analytics (page views, time spent on website, resource downloads, etc).