Breast cancer knowledge among women with intellectual disabilities and their experiences of receiving breast mammography

Aim: This paper is a report of a descriptive study of understanding of breast cancer and experiences of breast mammography among women with an intellectual disability.Background: Despite the efforts of government policies and documents to ensure equal access to improve health screening for people with intellectual disability, the uptake for breast mammography within this population still remains lower than that of the general population.Methodology: A qualitative approach using four focus groups was undertaken with 19 women identified as having a borderline to moderate intellectual disability all of whom had received a breast mammography. Data collection took place in 2009. Analysis of the data was undertaken using thematic content analysis.Results: The women’s knowledge of breast cancer including associated risks, preventative factors and signs and symptoms were extremely limited with their sources of knowledge primarily coming from carers or nursing staff on receipt of an invitation for mammography. Although these women expressed a positive attitude towards their experiences of breast mammography, they also described negative feelings of fear and anxiety, attributed to a lack of understanding about the screening process. A lack of information and embarrassment were identified as the main barriers to screening for this group.Conclusion: This study highlights the need for accessible multi-format information in order to facilitate health promotion and education for women with intellectual disability, their family carers and health care staff working with this target group in order to enhance the knowledge and awareness of breast cancer and screening.