Barriers and enablers to participating in regular screening programmes for women with cerebral palsy: A qualitative life course study

Abstract

Aims: To determine the barriers and enablers to regular, women-oriented screening programmes for women with cerebral palsy (CP); and to discuss the participants' suggestions for change.Design: Qualitative life course approach.Methods: Twenty-five life course interviews were conducted with women in 2020 who identified as having a diagnosis of CP. Interviews were conducted in person or using electronic platforms. Framework analysis was used to interpret the data.Findings: Access and utilization of regular screening programmes for women with CP across the life course are determined by multiple socioecological factors. Three themes are discussed focusing particularly on cervical and breast screening: 1. barriers, 2. enablers and 3. women's suggestions for change. Some women chose to opt out of sexual health checks for fear they would be too uncomfortable or the procedure would be too difficult. Practitioner attitudes towards disability in general, as well as the extent to which they understood the effects of CP for women, was highlighted as a barrier. Accessibility and adaptability of the environment also influenced women's uptake of screening. Conclusion:Women with CP face many challenges to their sexual and reproductive healthcare. These can deter them from participating in regular women-oriented screening programmes, which puts them at higher risk of preventable diseases.Understanding the lifelong effects of CP for women, and the interaction with their reproductive health could help to reduce unmet needs and increase participation in relevant screening across the life course.Impact: Knowledge of the challenges to regular screening programmes experienced by women with CP across the life course is crucial to provide appropriate preventative healthcare for women with CP across different stages of life. Elements of this knowledge could have benefits for the care of all disabled women.

Adults with Cerebral Palsy: Navigating the Complexities of Aging

“…Although women with and without disabilities share common fertility rates, only 11% of those with disabilities become pregnant [ 68 ]. This disparity suggests that there is a lack of health care services, family support, adequate accommodation, and experience of practitioners in pre- and post-pregnancy care for women with CP [ 69 , 70 ]. Common misconceptions by health care professionals on the sexual lifestyle of women decrease the incidence of experiencing motherhood [ 71 , 72 ].…”

Enabling the Authentic Voice: Generating Ethnographies of Women with Cerebral Palsy

“…Grounded in the first-hand accounts of women with CP, both studies evidence good practice and challenges experienced in relation to the provision of sexual and reproductive healthcare across the life course. The authors have published the full findings of both studies elsewhere (Shah et al, 2020;Shah et al, 2021), which emphasise the importance of enabling women with CP to participate in research, so they can be active agents in the production of guidance, both for practitioners and for other women with CP to direct their own health and healthcare.…”