Title: Improving experiences of pregnancy and birth for women with Cerebral Palsy: a co-produced study
Advisor: MG (Bham)
The aim of the study is to find out about how women with Cerebral Palsy (CP) experience pregnancy and childbirth in the UK. This includes the choices they are given, how they make those choices, what helps and what does not help them access maternity services and good quality care during pregnancy and
The main RDS contribution was giving advice on a Public Involvement Fund (PIF) application to support patient and public involvement (PPI) ahead of a Research for Patient Benefit submission. The front line RDS advisor had Zoom meetings with the client and several e-mail conversations ahead of submitting the PIF application to reward and recognise the time and contribution of the PPI group.
Ahead of submitting the PIF application, RDS advice included: It would be helpful for members of the PPI group to comment on the Research Questions; include how the PPI groups involvement in the development of the grant application will be recorded; detail any PPI experience of the co-applicants; and show how the quality of the PPI work is ensured using the six UK Standards for Public Involvement.
Ahead of re-submitting the PIF application, the RDS advisor had discussions with the client to clarify particular aspects of the submission. One aspect was the inclusion of public contributors with Cerebral Palsy who were non-parents too. We also highlighted that the PPI group had a wealth of experience including the CP specialist officer for Scope and two first-time mothers who had their babies during Covid19 lockdown.
In the re-submission of the Public Involvement Fund (PIF) application, the client successfully addressed the points raised and was awarded the PIF to the value of £350 on October 2nd 2020. During October 2020, the main applicant supported 5 PPI members through the development of the Research for Patient Benefit grant application via the ‘Pregnancy and Parenting with Cerebral Palsy Facebook Group’.
The group and individual members contributed to the development of specific parts of the application. They commented on the aims and objectives, research questions, methods of recruitment, methods of data collection and dissemination and the Plain Language Statement. One of the main research questions was ‘What are the barriers and enablers that contribute to pathways of successful reproduction and parenting for women with Cerebral Palsy?’
These aspects were revised accordingly ahead of submission. Following completion of the PPI work, the co-applicant stated on 11th November 2020, that the main applicant and PPI group had ‘done some incredibly high standard PPI work feeding into our grant’.
The client subsequently submitted the stage 1 application to Research for Patient Benefit in November 2020 and incorporated PPI involvement in her application. In February 2021, the client found out that her application had been successful at stage 1 and that it was shortlisted. The deadline for stage 2 submission is March 2021. Feedback from NIHR RfPB was particularly favourable for the PPI involvement. The application was scored highly and commended for their PPI work.