Promoting Cancer and Screening Awareness in Women with Intellectual Disabilities: A Mixed Methods Study [Volume 1]

Abstract

Promoting Cancer and Screening Awareness in Women with Intellectual Disabilities: A Mixed Methods Study. BY Mary Reidy Background: People with intellectual disabilities are living longer which has led to increasing cancer rates among this demographic. Women with intellectual disabilities are more likely to have poorer cancer awareness and lower screening participation than women in the general population. They also present at later stages of cancer despite similar cancer rates in both populations. Aim: This two phase mixed methods study tested the feasibility and acceptability of a targeted educational intervention for women with ID and their carers. EMBRACES-ID (Early Monitoring of Breast and Cervical Cancer Signs & Screening in Intellectual Disabilities) aimed to raise the awareness of warning signs, risk factors, screening programmes, and promote early help-seeking on symptom discovery. Methods: In line with the MRC’s Guidance for Complex Interventions this work was based on empirical evidence and was theoretically underpinned by Bandura’s Social Cognitive Theory. Phase I involved a survey of carers (n= 125) and women with mild to moderate ID (n = 45), as well as semi- structured interviews with 25 carers. Phase II involved the feasibility and acceptability testing of EMBRACES- ID among 25 women with mild to moderate ID and 9 carers. A pre-test/post-test design incorporating a 12 week evaluation survey and interview was utilised. Ethical approval for the study was received from the relevant Research Ethics Committees. Findings: In Phase I, gaps in cancer and screening awareness were found. These results formed the basis for the development of the EMBRACES-ID intervention. In Phase II, testing of EMBRACES-ID identified changes in cancer and screening awareness for women with ID and their carers, the majority of changes were retained over the 12 week post intervention time frame. Conclusions: EMBRACES-ID raised cancer and screening awareness for women with ID and their carers. This may lead to earlier diagnosis and treatment of cancers with better survival outcomes