Exploring disability prevalence among childbearing women attending a tertiary maternity service in Melbourne, Australia using an audit and cross-sectional survey

Abstract

Background: Although there is an estimated rate of 10% of women of childbearing age in Australia who have a disability, there is a lack of accurate prevalence data, with the true rate unknown. The timing and questions used to collect women’s disability status in pregnancy vary, and there is limited knowledge on how women accessing maternity services in Australia would like to be asked about their disability status. Objective: To explore the prevalence of women with a disability receiving maternity care using a direct and indirect disability identification question. Secondary aims were to explore how women would like to be asked about their disability status and to examine the difference between self-reported and cliniciandocumented disability status within medical records. Research design/Setting: The study was conducted at a tertiary maternity hospital in Melbourne, Australia, and included two components. Component one used a cross-sectional survey with two different cohorts of women administered face-to-face on the postnatal ward (Cohort 1 – February 2019, Cohort 2 – December 2019). In Cohort 1, a specific disability identification question asked: ‘Can you please tell me if you identify as someone who has a disability?’. In Cohort 2, an indirect disability identification question asked: ‘Do you require additional assistance or support?’. Other questions explored women’s views on disability identification. Component two consisted of an audit of the medical records to compare disability documentation in the medical records of the women who participated with women’s disability self-identification status. Results: 371/467 (79%) of eligible women that were approached participated in Cohort 1 and in Cohort 2, 295/346 (85%) of eligible women that were approached participated in the study. In Cohort 1, 5% (17/371) of women self-identified with having a disability. In Cohort 2 16% (46/295) of women reported needing additional assistance/support, however of these, only nine women viewed this as a disability. In Cohort 1, of the women who self-identified as having a disability, 82% had this recorded in their medical record. An additional 12% (43/354) of women in Cohort 1 who may have had a disability according to the Australian Bureau of Statistics classification, did not self-identify as having a disability. In Cohort 2, 37% (17/43) of women who self-identified as needing additional support did not have these needs documented in the medical record. Less than a quarter of women in both cohorts were asked about their disability status during their maternity care. Women with a disability or additional support needs suggested both direct and indirect ways of being asked about their disability status, and their responses were similar to women who did not self-identify with having a disability or additional support needs. Conclusions: Disability prevalence data is highly dependant on the wording of the disability identification question. It may be appropriate to ask about disability both indirectly, in terms of additional support needs, and directly, to enable disclosure for those who do identify with a disability. Disability questioning should be routine and standardised guidelines around disability identification should be developed to allow for tailored adjustments to care on an individual level.