Preventive breast health care, an embarrassing subject for women with intellectual disability

Women with intellectual disability run an increased risk of dying of breast cancer compared to the general population. There is a clear connection between late detection and low participation in the mammogram screening program. This study aimed to explore the views and experiences of breast health care in women with intellectual disability. Semi-structured interviews were performed individually and in small groups among 11 women with intellectual disability in Sweden. Breast cancer screening is not adapted to women with intellectual disability. Insufficient support and disrespectful treatment can cause ignorance, fear and anxiety. Familiarity with processes and personal networks are examples of improvement in participation. Preventive breast health care is a sensitive topic for many women with intellectual disability that needs to be addressed. Preventive breast health care needs to be more inclusive and better adapted. Personal networks must not determine the possibility of preventive care.