Paid- and family-carers' views on supporting women with intellectual disability through breast screening

D.S. Willis, Lynn Kilbride, D. Horsburgh, C.M. Kennedy

Research output: Contribution to journalArticle


The cancer needs of people with intellectual disabilities are increasingly being debated. This paper explores the views and experiences of paid- and family-carers when supporting women with intellectual disabilities through breast screening. An ethnographic approach was drawn on and purposive sampling methods were employed. One-to-one semi-structured interviews with 13 carers (10 paid-carers, three family-carers) were undertaken and supported by periods of focused observation on behaviour related to breast awareness and breast screening. Findings indicated that most women with intellectual disabilities needed some support but the quality and quantity of support depended upon both the woman's level of intellectual disability and who was supporting them. In terms of breast screening, the findings suggested that the women were potentially being let down at all the different stages of the breast screening process, from the arrival of the invitation letter to the experience of having a mammogram. The conclusion drawn was that there was evidence of equality of service provision but inequality of service delivery and uptake.
Original languageEnglish
Pages (from-to)473-482
Number of pages10
JournalEuropean Journal of Cancer
Issue number4
Early online date7 Oct 2014
Publication statusPublished - Jul 2015



  • intellectual disability
  • carers
  • breast screening

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