What influences women with intellectual disabilities to attend breast screening? Experiences of women who have and have not participated

Background: Despite breast screening in Britain being free to all women within the allotted age range, uptake of this service is often poor in women with intellectual disabilities. Reasons put forward are numerous, including poor knowledge, pain and difficulty travelling to the centre. However, what influences the decision to attend is rarely discussed. Methods: Twelve semi-structured interviews and three focused observation were undertaken with women with intellectual disabilities to explore what influenced them to participate in breast screening and their experience of having mammography. Data were analysed thematically using a blended framework. Results: Despite the experience of mammography being negative, high uptake of breast screening services was reported in this study. Pain and previous poor treatment in hospital were reasons for nonparticipation in breast screening. Although awareness about breast screening varied, those who had previous breast problems were more knowledgeable; however, there was poor awareness of the risks of hereditary breast cancer. Overall, paid-carers were found to play a key role, as means of support, information and a potential influence in determining participation in breast screening. Conclusions: There was general equality of access but an inequality in the preparation and delivery of the service which was dependent on a complex range of issues and relationships. Key to participation was preparation with the paid-carer facilitating discussions about breast screening were key to participating in mammography. This has implications on the future direction of funding and policy making. Risks associated with hereditary breast cancer and earlier presentation of breast tumours also needs highlighting.