Female family caregivers found to lack knowledge of need for breast and cervical screening for women with learning disabilities

breast and cervical screening

Studies have shown that women with learning disabilities are less likely than those without disabilities to have access to cervical and breast cancer screening services as set out in the relevant clinical guidelines.

The team at Improving Health and Lives, the  learning disabilities public health observatory (LDPHO) reported that reasonable adjustments were not being made in the provision of screening services, raising the question as to is whether or not the invitation to screening was fit for purpose, and if not, what impact this had on the numbers of people with learning disabilities coming forward for screening.

One US study we have posted about previously found that another reason for the low take up related to the fact that women with learning disabilities often had little knowledge of cervical and breast cancer screening and that those who lived at home with families had the most limited understanding

The researchers in this study were interested in the perspectives of family care givers. They used semi-structured interviews with 32 female family caregivers to look at what barriers they felt existed in relation to screening services for breast and cervical cancer.

What they found from a thematic analysis of the results was that caregivers reported a number of barriers, including not knowing or not believing the exam was needed and discomfort during exams

However, they also had views on what might enable better access to screening. the most common enabler being good preparation for the person prior to the exam, which is entirely consistent with previous studies.

In common with the US study of women with learning disabilities referred to above, the researchers here also found that a significant portion of their sample lacked knowledge about the need for cervical and breast cancer screening for women with learning disability.

Family Caregivers’ Perspectives on Barriers and Facilitators of Cervical and Breast Cancer Screening for Women with Intellectual Disability, Swaine J et al in  Intellectual and Developmental Disabilities, 51, 1, 62-73.

LINK to Equal access to breast and cervical screening for disabled women NHS Guidance

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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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