Hidden Voices: A Qualitative Study of Cervical and Breast Screening Experiences for Women with Mild Intellectual Disability Living in the Community

Abstract

This paper reports on the issue of gynaecological screening for women with intellectual disability living in the Australian community. A qualitative study using grounded theory was conducted with data collected through semi-structured interviews and focus groups. The participants were 31 women with mild intellectual disability and four of their carers, with some additional information contributed by health professionals. Themes emerging from the data identified barriers to cervical and breast screening services, as well as factors that appeared to facilitate the participants' access to screening. The study found three sets of linked factors influencing screening impetus. These were participant attributes such as knowledge level and ability to assess own risk, the relationships of the clients with significant others such as paid and unpaid carers, and health service provider behaviours that promoted respectful individualised consultations with adequate time for communication, explanation and education. Conclusions from this study were that gynaecological screening of disadvantaged groups is likely to be increased by health education programs for consumers, as well as their carers and health service providers which focus on the specific issues for this group. The study also confirms what is already known from disease prevention campaigns aiming to improve screening and immunization rates: That proactive strategies such as health professionals offering gynaecological procedures in a sensitive manner to clients and registers that send out consumer reminder letters can substantially improve screening rates and support this consumer group's right to quality of life.