An ethnographic exploration of the influences around participation in breast screening for women with learning disabilities

Background Greater longevity means that many more women with learning disabilities (LD) are becoming eligible to participate in the NHS Breast Cancer Screening Programme (NHSBCSP). The NHSBCSP is used to detect early signs of breast cancer and is open to all women over fifty years of age. Participation by women with LD is lower than that of the general population and little is known about their experience of mammography or what influences their decision whether or not to participate in the programme. This study explored these gaps. Aim To explore factors influencing whether or not women with LD participate in breast screening and their experience of having mammography. Methods An ethnographic approach was adopted using purposive sampling. One-to-one semi-structured interviews were conducted with 12 women with LD, 10 allied-professionals and 13 carers (10 paid-carers, 3 family-carers). These were supported by periods of focused observation of behaviour related to breast awareness and breast screening. Field-notes were used to support data collection. Data was subjected to thematic analysis, using a blended framework based on McCarthy (1999), Smith (1999) and Smith and Osborn (2003). Findings Findings revealed that the women’s experience of breast screening was negative, and that this dissuaded them from returning. Factors influencing attendance at breast screening were inextricably linked to the women’s level of LD, the level of support they received and the philosophy of care observed in the work place of the paid-carers. These factors were identified as influencing each stage of the breast screening process. Conclusions Findings revealed that whilst the women’s experiences of breast screening were negative, each woman’s journey was unique and depended upon the support provided and their level of LD. For this reason, despite equality of access to breast screening, there was inequality in preparation and delivery of the service.