Reducing barriers to cervical screening for autistic people and people with learning disabilities

Throughout the UK only 30% of autistic people and people with learning disabilities attend for cervical screening compared to 75% of the general population. The range of abilities possessed by autistic people and people with learning disabilities makes reducing barriers challenging. Two of the largest challenges are facilitating accessible information to enable informed choice and decision-making and raising awareness of their needs with the staff within the cervical screening programme.
Aims: After discussions with autistic people and people with learning disabilities using involvement methods, the aim was to co-produce videos about cervical screening for autistic people, people with learning disabilities and staff to assist cervical screening.
Methods: Co-production, using inclusive creative methods, was used with a team of three people with learning disabilities and autism, one person with autism, their support and a researcher to develop a series of short videos. A further co-produced video was developed for vaccination for HPV in Urdu. 7 Urdu speaking mothers of autistic children and children with learning disabilities, an interpreter and 2 researchers participated in the latter.
Results: Developing videos with autistic people and people with learning disabilities plus Urdu speaking parents exhibited benefits in the development of reciprocal and collaborative relationships with clinical and community partners. For the parents, the range of views on the area meant careful negotiation by the researchers whilst considering cultural sensitivities. Working with people with learning disabilities and autistic people meant developing relationships and rules first before proceeding to developing the videos. The video for staff on the cervical screening pathway is currently being empirically evaluated.
Conclusion: Using co-production and creative methods produces more accessible information. This enables choice and decision-making by marginalised and excluded groups whose voices are often excluded from cancer research.