To what extent are midwives adapting antenatal information for pregnant women with intellectual disabilities? A survey of NHS trusts in England

Abstract

Objectives: To identify the existing antenatal information provision practices for pregnant women with intellectual disabilities in England. To identify how practices between and within local supervising authorities differed, and if midwives were adapting standard antenatal information for pregnant women with intellectual disabilities, including examples of accessible information being used.

Study design: Cross-sectional survey.

Methods: All contact supervisors of midwives from acute trusts with maternity services were accessed via the local supervisor of midwives officers' databases and sent a questionnaire. Quantitative data were collated. Associations between trust size, geographical location, antenatal provision and National Institute for Health and Care Excellence guidelines alongside National policy were examined using Fischer's exact test of association.

Results: Contact supervisors of midwives returned a questionnaire on behalf of their trust (74, 53%). The majority worked in maternity units with more than 4000 births a year (50, 66%). Few trusts had a specialist or lead midwife in post for pregnant women with intellectual disabilities (17, 22.9%) but over half (39, 52.7%) reported that their trust had a specialist learning disability nurse in post. Only 28.3% reported availability of post registration training and even fewer (8, 10.8%) had access to written protocols. Less than half reported extra time being offered at the booking (29, 39.1%) or routine antenatal appointments (30, 40.5%). Less than a quarter (17, 22.9%) reported that their trust had routine antenatal written information available in accessible formats.

Conclusion: Reasonable adjustments to standard antenatal information for pregnant women with intellectual disabilities were not common practice. Most trusts did not have local guidelines in place or offer midwives post registration education to help support them in this requirement.

Keywords: Accessible information; Cross-sectional; Intellectual disabilities; Learning disabilities; Maternity services; Midwives; Quantitative; Reasonable adjustments; Survey.