More accessible information needed to improve uptake of mammography by women with learning disabilities

Health information

The uptake for breast mammography remains low for women with learning disabilities, despite a number of policy developments and guidelines in recent years.  This study set out to understand better the experiences of women with learning disabilities undergoing breast mammography.

The study team worked with four focus groups involving 19 women identified as having a borderline to moderate learning disability. Each of the women had received a breast mammography.

Analysis of the themes emerging from the content of the groups revealed a very limited understanding of breast cancer, risks, preventative factors and signs and symptoms. Sources of knowledge quoted were carers or from nursing staff when they got an invitation for mammography.

The women were mainly positive about their experience of breast mammography, but talked about feelings of fear and anxiety about the screening process and the fact they understood little about it. Lack of information and embarrassment were identified as the main barriers to screening for this group.

The authors call for accessible multi-format information to enable women with learning disabilities, their family carers and staff working with them to improve the knowledge and awareness of breast cancer and screening and consequently improve uptake of mammography.

Breast cancer knowledge among women with intellectual disabilities and their experiences of receiving breast mammography, Truesdale-Kennedy M et al in . Journal of Advanced Nursing 67 (6), 1294–1304.


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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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