Choices and Support on the Maternity Journey in the UK:Voices from Women with Cerebral Palsy

Introduction: The number of disabled women, including those with cerebral palsy (CP), experiencing pregnancy and motherhood globally is increasing. This could be attributed to equality legislation; medical advancements (including assistive reproductive technologies); and strong activism and support networks of disabled women raising awareness of their rights and choices. These women, however, continue to face disadvantages and discrimination. Methods: The research question explored the experiences of women with cerebral palsy in relation to pregnancy and motherhood in the UK. Semi-structured qualitative interviews with mothers with CP were analysed thematically. Digital methods ensured the research process was accessible for participants. Findings: Women with CP experience support but also considerable challenges during pregnancy and childbirth. Less than optimal care during the maternity care journey was evident. Women felt they were not listened to or else regarded as a risk to be managed. Choice was sometimes compromised. Practitioners lack of knowledge and understanding of disability and CP, undermined women’s trust in care. It also compromised safety. Supportive family relationships, including an active role of partners offered a helpful resource, as did the women’s personal agency and resilience. Conclusion: The issues faced by women with CP could be equally applicable to other types of impairments. It is two decades since the United Nations asserted that all disabled women have a right to the same access to maternity services as their non-disabled peers (UNCRPD, 2006). Our research is a reminder that disabled women continue to experience disadvantage. Findings emphasise the need for sensitive and responsive care, throughout the maternity journey, including deciding when and how to have children. Findings also highlight a need for training and education among healthcare professionals.