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

Abstract

This thesis presents a qualitative study exploring the gynaecologic screening experiences of women with an intellectual disability living in the Australian community. A Grounded Theory methodology was employed to analyse data from 31 participants and 4 of their carers to develop theories explaining why and how this group participate in or avoid cervical and breast cancer screening. The core theme emerging from the data was that there are some factors which appear to facilitate gynaecologic screening and others which seem to act as barriers. Three interconnected sub-categories emerging as influential in screening uptake were the attributes of the participants, the attributes of carers, and the attributes of health service providers. The study found that the screening of these participants did not concur with Australian Institute of Health and Welfare recommendations. Some individuals who were in high risk groups had not been screened, while others who had little or no risk for cervical and breast cancer had been screened inappropriately. Other findings were: that complex personal factors contributed to their knowledge and motivation to participate in screening; that they preferred oral information from trusted persons and visual sources, but most health promotion literature is text-based and quite difficult for them to assimilate; that those who perceived themselves as at high risk of cancers were often too frightened to seek screening in case it confirmed they had the disease; that some could benefit from health education and assertiveness programs; that unpleasant screening experiences produced aversion to further screening; that professional and non-professional carers influence the screening uptake of their clients and would probably benefit from further education in both cancer screening and advocacy; that participants who were assisted by professional carers were more likely to participate in screening than those living either independently or with family; that health care providers require knowledge and communication skills to provide good health care for these patients, and some providers would probably benefit from further education; that the patient-provider relationship was important in screening uptake; that the presence of a woman or women during gynaecological examinations would probably increase these patients' sense of personal safety and reduce their anxiety; and that these patients usually required extended health consultation time to compensate for their disabilities. It is argued that appropriate cancer screening for this consumer group is an ethical issue that requires the attention of health professionals, policy writers, educationalists and advocacy groups.