Midwives lack specialist training for women with learning disabilities

Midwives feel inadequately prepared to support women with learning disabilities because they lack specialist training and require additional support in health education and communication skills, according to new research.

The study, published in the British Journal of Learning Disabilities, explored the experiences of women with intellectual disability (learning disability) during pregnancy and midwives’ experiences of providing care. It found that some challenges experienced by pregnant women with intellectual disability include sharing their pregnancy news, involvement in their care and fear of not being allowed to keep their baby.

Whereas, midwives felt ill-prepared for their supportive role and some antenatal general assessments were difficult to interpret because they were challenging to perform or explain to women with an intellectual disability.

The study comes as the Care Quality Commission published a new report presenting the findings from its recent national maternity inspection programme. It highlights common issues impacting on the quality and safety of 131 NHS hospital maternity services across the country. This includes issues with staffing, buildings, equipment and the way safety was managed, warning preventable harm was at risk of becoming “normalised”.

It also found evidence of discrimination against people belonging to ethnic minorities, including a lack of support for women whose first language was not English. Equity in access to pain relief during labour and after birth has also been identified as an issue nationally.

What is good practice for midwives?

The CQC has published a series of online resource materials aimed at sharing good practice and encouraging improvement in NHS hospital maternity services. Although it doesn’t mention autistic women or women with a learning disability specifically, it does say that the needs and preferences of different women with protected characteristics under the Equality Act should be considered when planning, delivering and coordinating the maternity service.

It adds that:

• The maternity service should collaborate with other services and providers to provide a holistic package of support for women.
• The maternity service should liaise with women, their families and carers to ensure all partners are informed of any diverse needs that should to be addressed.
• Any reasonable adjustments are made and communicated, and action is taken to remove barriers when women struggle to access services.

The last point is important as the research also found there were two common factors between both midwives and pregnant women with an intellectual disability: the first factor concerned the importance of effective communication and the second factor related to a perceived lack of education regarding intellectual disability. Both groups deemed these to be crucial contributing factors to the delivery of a safe, informative and effective antenatal experience.

The authors said that enabling women with intellectual disability to participate and make decisions regarding their healthcare is crucial as including them in the decision-making process enables them to achieve an acceptable level of autonomy.

It is also vital that women are presented with understandable information so that they can exert their autonomy over their pregnancy and support plans.

They added: “Additional investigation is required to comprehend what is the impact of effective communication and enhanced learning on the antenatal experience and its outcomes. Women with an intellectual disability need to be included in policy and education developments to ensure that resources are concentrated on the domains that are most lacking.”

The study was a systematic review of existing literature and the selected papers were published between January 2012 and December 2022 and originated from the UK, Sweden, Canada and Ireland.

Alison Bloomer

Alison Bloomer is Editor of Learning Disability Today. She has over 25 years of experience writing for medical journals and trade publications. Subjects include healthcare, pharmaceuticals, disability, insurance, stock market and emerging technologies. She is also a mother to a gorgeous 13-year-old boy who has a learning disability.

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