‘…but look how many lives would have been saved if this was available then’ Exploring the acceptability of future Human Papillomavirus self‐sampling, and the barriers and facilitators of cervical cancer screening for those with intellectual disabilities in Scotland

Abstract

Background Cervical cancer screening attendance among women with intellectual disabilities (ID) in Scotland is approximately 30%, significantly below the general population rate of 69% and the WHO's recommended 70% target. HPV self-sampling could provide a more accessible screening option for this underserved population. This study aimed to understand the views and experiences of women with ID regarding cervical cancer screening and the acceptability of HPV self-sampling. Methods A qualitative study using focus groups was conducted with women with ID who attended third-sector community groups across Scotland, along with their carers. Four focus groups were held between September and October 2024, with a total of 13 participants (11 women with ID, 2 carers). Data were analysed using reflexive thematic analysis. Results Five main themes emerged: (1) National Health Service (NHS) communication as a source of distress; (2) power imbalances between health care providers and women with ID: feeling unheard, dismissed and out of control; (3) enduring consequences of inadequate care; (4) past trauma shapes future avoidance; and (5) self-sampling as a pathway to empowerment. Participants demonstrated high acceptability of self-sampling, viewing it as a potential solution to overcome barriers to traditional screening. Conclusion This research reveals significant systemic inadequacies in current cervical cancer screening services for women with ID, whilst highlighting self-sampling's transformative potential. Successful implementation requires comprehensive accessible information, enhanced health care professional training and trauma-informed care approaches. Self-sampling could significantly advance health equity goals whilst improving health care outcomes for this underserved population.