Edinburgh Napier University

  Background: Women with intellectual disability (ID) are surviving to the age group at greatest risk of developing breast cancer (50-69 years). These women are more likely to experience a greater number of risk-factors placing them at an advanced threat of developing breast cancer. However, as a result of cognitive deficits and communication difficulties these women are dependent upon staff to support them to attend the breast screening clinics.Aim: The aim of this paper was to examine how community nurses and residential staff support women with ID to access breast screening services.Methodology: Six focus groups were held with community nurses and residential staff who work in the field of ID in one region of the UK. The focus groups were tape recorded and the transcriptions were subjected to a thematic content analysis.Findings: Although many of the participants recognised the risk factors and signs/symptoms of breast cancer, there was still a deficit of knowledge. Both positive and negative experiences of women with ID attending for breast screening were reported; however greater discussion focused on the latter. The participants identified ‘a lack of health educational material’ and also negative ‘emotions, attitudes and physical barriers’ as inhibiting factors for attendance.Discussion: This paper highlights the need for developing a health promotion programme for women with ID focusing on breast awareness and information on screening, and also healthier lifestyles. Breast awareness via visual checks were identified for women with ID who refused to attend the breast clinics, however issues of informed ‘consent’ and ‘vulnerability’ were raised for staff and also family carers having to undertake these checks. Development of user friendly health educational literature employing ‘pictures, symbols, signs’ and simplified words should be accessible to all ID staff, healthcare staff ,and also women with ID.