RICH study
Research type
Research Study
Full title
RIghts and CHoices for women with cerebral palsy: A qualitative study to understand what works in the provision of their maternity care
IRAS ID
328904
Contact name
Nia Jones
Contact email
Sponsor organisation
Nottingham University Hospitals NHS Trust
Duration of Study in the UK
1 years, 5 months, 30 days
Research summary
Cerebral Palsy (CP) is a lifelong impairment, caused by damage to the infant brain before, during or after birth. It affects people differently e.g. impaired muscle control, posture and movement. Advances in healthcare mean that life expectancy of people with CP is similar to those without CP. Thus more women with CP are giving birth. Whilst entitled to the same rights and choices as non-disabled women, they encounter barriers trying to access appropriate maternity care. These barriers include negative responses from healthcare practitioners (HCPs). Those with CP believe they also face difficulties deciding if, when and how they have children. Few studies have explored disabled women’s experiences of pregnancy, childbirth and the postnatal period (6 weeks following birth) and there are no UK studies focusing on women with CP. We want to find out how women with CP in the UK experience pregnancy, childbirth and the postnatal period. This includes which choices are available to them; how they make those choices; what helps; and what does not help.
To do this we will:
1) Talk to 25-30 women with CP - of different ages, and with different types of CP, who have given birth within the last five years.
2) Send a short questionnaire to maternity units across the UK to find out what facilities they have for women with CP who are pregnant
3) Hold 5 focus group discussions with a mix of HCPs (midwives, health visitors, obstetricians and GPs) who have provided maternity care to women with CP within the past two years.
The views of women and HCPs will be compared and used to develop recommendations for maternity care and information materials for women and HCPs. The study was co-designed with adults with CP and we have partnered with the charity Scope; the co-lead has CP herself.REC name
South West - Frenchay Research Ethics Committee
REC reference
23/SW/0145
Date of REC Opinion
30 Nov 2023
REC opinion
Favourable Opinion