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Hidden voices of maternity: parents with learning disabilities speak out
- Authors:
- CHANGE, PATIENT EXPERIENCE NETWORK
- Publishers:
- Change, Parent Experience Network
- Publication year:
- 2015
- Pagination:
- 28
- Place of publication:
- Leeds
This research looks at how parents with learning disabilities experience their maternity care and provides recommendations for service improvements that could support care to be more person and family centred. The report draws on the results of an online survey of 107 professionals, five focus groups with parents with learning disabilities, an easy read accessible survey of parents with learning disabilities, and desk research. Focus groups used a 'ladder of power' to discuss how much power professionals had over them as parents. Social workers were viewed as being at the top of the ladder of power. Parents reported that community midwifery services, advocacy services, buddy schemes and support groups worked well to improve their experience of maternity care. Areas that had a negative impact on the maternity experiences of parents with learning disabilities were staff attitudes, conflicting information, fathers feeling unwelcome during the birth, and lack of support when babies are taken away. The report also includes examples from professional on what they felt was working well maternity services. Appendices includes a list of useful resources identified during the project. (Edited publisher abstract)