Women with learning disability and their experiences of breast and cervical screening

Plain English Summary

Women have mammograms and smear tests to check for early signs of cancer. Research has shown that women with learning disability do not always have these tests. This means that if they do get breast cancer or cervical cancer it can take a long time for a doctor to realise that is what is wrong with them. It may also mean that the cancer can’t be treated as easily.

We know that New Zealand women with learning disability do not get mammograms or smear tests as often as other women. This research is to find out what women with learning disability know about mammograms and smear tests, and what they think about them.

We hope that the research will help us to make sure that women with learning disability have the information they need about mammograms and smear tests. We will also talk with people who do mammograms and smears about how to make sure women with learning disability take part . People First New Zealand will be helping us with this.

About the research

Cervical screening and routine mammograms are implemented to reduce the number of cancer deaths. International research has, however, indicated that women with learning disabilities confront multiple barriers when accessing primary health care services and are less likely to participate in screening programmes. Consequently this group of women are at risk for higher rates of cervical and breast cancer, later diagnosis and higher mortality than other women.

In the New Zealand context, in 2011 the Ministry of Health reported that people with learning disability were 1.5 times more likely to receive cancer care or treatment than people without learning disability. Furthermore, women with learning disability were less likely to have participated in either breast or cervical screening than their non-disabled peers. Of greatest concern perhaps, was the reported finding that women with learning disability had an annual cervical screening rate of 33.6% - a figure that stands in marked comparison to a screening rate of 70.6% for non-disabled women in New Zealand. Screening services deliver preventative health checks that have the potential to detect the early signs of serious health conditions. For this reason, it is important to ensure that people with learning disability access screening services at least at the same rate as other New Zealand women.

Donald Beasley Institute researchers together with colleagues from AUT University have been awarded funding by the Frozen Funds Charitable Trust to explore women’s experiences of breast and cervical screening for New Zealand women with learning disability. The research seeks to explore three key questions:

  1. what do women understand about breast and cervical screening services (including the intent and purpose of such services, and their relevance to them)?
  2. how do women experience breast and cervical screening (including the factors that have facilitated or impeded their participation in women’s health screening)?
  3. what factors do health practitioners and disability service providers see as either facilitating or impeding the participation of women with learning disabilities in breast and cervical screening?

This qualitative research is seeking the knowledge, experience and views of women with learning disability in the first instance. We believe that by prioritising the voice of women with learning disability we will gain important insights into their health literacy, and their experiences of screening service. This information can potentially be used to increase understanding of and access to women’s health screening. In the later stages of the research People First New Zealand will be collaborating with the research team to develop easy read information and an oral presentation format that can be delivered in partnership with women with learning disability, to women with learning disability, as well as to health screening and health promotion practitioners.