Improving accessibility to cervical cancer screening for individuals with intellectual disabilities in Scotland: Exploring barriers, facilitators and the acceptability of future HPV self-sampling

Abstract

Background: Cervical cancer is the fourth most common cancer in women around the world, with an estimated 660,000 newly identified cases in 2022 (WHO, 2024). A group where cervical cancer screening attendance has consistently been the lowest at around 30% is those with intellectual disabilities (ID). Screening for cervical cancer in Scotland checks for high-risk Human Papillomavirus (HPV) and cervical cell changes to enable early detection and prevention. HPV self-sampling could provide an easier and more accessible opportunity for women with ID to screen for cervical cancer. The objective of this study was to gain an understanding of the barriers, facilitators and acceptability of future HPV self-sampling from the perspective of healthcare professionals (HCP) and those with an ID across Scotland. Methods: A mixed methods design was utilised. An online survey was used for HCPs; themes from qualitative data were analysed using a social constructionist thematic analysis (TA). Quantitative data was analysed using descriptive and correlational analysis. Focus groups explored the views of those with ID. Recordings were transcribed and reflexive TA used to analyse data. Results: A total of 107 participants across Scotland took part in the survey. Most participants were female (94.4%), with 61.7% working in urban locations and 38.3% in rural locations. Participants with greater knowledge of self-sampling were more likely to think it was a good idea. Those with increased knowledge of self-sampling were more likely to think that self-sampling should be promoted. Zero participants thought that it should not be promoted. Thematic analysis resulted in 4 themes and 2 subthemes, including “self-sampling could provide autonomy and choice for the public” and “insufficient thought could lead to self-sampling increasing health inequities”. HCP completed story completion tasks and identified groups where self-sampling could be advantageous or disadvantageous. A total of 13 participants took part in focus groups. Participants were female (n=12; 11 women with ID, 1 carer) and male (n=1 carer). Thematic analysis resulted in 5 themes and 6 subthemes, including “power imbalance leading to loss of control and uninformed consent” and “self-sampling could be a powerful tool to regain control and reduce feelings of vulnerability”. Participants considered self-sampling a positive initiative which could overcome many barriers to screening providing that the needs of patients were considered within its implementation. Conclusion: This study evidenced significant support for self-sampling from both HCP and women with ID in Scotland. Self-sampling could significantly advance health equity goals while improving healthcare outcomes.