Factor influencing women with learning disabilities deciding to, and accessing, cervical and breast cancer screening: Findings from a Q methodology study of women with learning disabilities, family and paid carers

Objectives: To understand knowledge of, attitudes towards, and decision making around cervical and breast cancer screening in women with learning disabilities, family carers and paid carers.

Methods: A Q methodology study involving 13 women with learning disabilities, three family carers and five paid care workers, from the North- East of England. A Q-sort, of 28 statements was completed with all participants completing a post-Q-sort interview to understand the reason behind the card placements. Factor analysis was completed using PQMethod and interpreted using framework analysis.

Results: Factor one, named ‘Personal choice and ownership’, explores how women with learning disabilities want to be supported to make their own decision to attend cancer screening and explored their preferred support needs. Factor two, named ‘Protecting vs enablement’, portrayed the battle family carers and paid care workers felt to protect women with learning disabilities from harm, whilst feeling that they were supporting women with learning disabilities to decide to attend cancer screening. Eight consensus statements were identified indicating a shared perspective.

Conclusions: Cancer screening services should ensure that women with learning disabilities are supported to make informed decisions to attend cancer screening and then be further supported throughout the cancer pathway.