The Together Project: Supporting the delivery of good practice in maternity services for parents with learning disabilities
Start date
September 2019End date
OngoingProject website
ViewAbstract
Background
It is estimated that 1.5 million people in the UK have a learning disability (Mencap) and 7% of people with learning disabilities go on to be parents (Best Beginnings). Women with learning disabilities are among the least likely to report a positive experience of maternity care. Health Education England funded The Together Project to develop resources - in collaboration with key-stakeholders - to support the maternity workforce in delivering good care to parents with learning disabilities.
Research questions
- What are key stakeholders’ views of ‘good’ maternity care services for parents with learning disabilities?
- How can good practice be built on so that the health and social care workforce are best supported to deliver care well?
Methods and analysis
Phase 1
16 key stakeholders (health and social care professionals, parents with learning disabilities and their informal supporters/carers) were interviewed to understand views of best practice. A thematic analysis of interviews informed resource development.
Phase 2
20 healthcare professionals gave feedback on the developed resources via online survey or discussion group.
Findings and implications for practice
Key stakeholders recommended that good maternity care for parents with learning disabilities requires a positive and proactive approach to identifying need; reasonable adjustments to communication and providing information; and professionals working together to support and enable parents.
Outputs
The project team co-developed two resources to support the maternity workforce in delivering good care to parents with learning disabilities: a Toolkit and Maternity Passport
Funder
Team
Principal investigator
Biography
Anna is a Post Doctoral Research Fellow within the International Care Ethics Observatory at the University of Surrey. Her research focuses on the development and implementation of interventions to support the provision of good ethical care throughout the life course. Anna has a particularly interest in the care experience of older people and people with learning disabilities. Anna leads the Together Project funded by Health Education England https://www.surrey.ac.uk/together-project
Co-investigators
Mr Scott Watkins
Expert by experience
Researcher
Dr Catherine Parsons
Research Fellow
Outputs
Executive summary
Parents with learning disabilities offer advice to maternity professionals
Resources for maternity services and parents
The Together Project Toolkit and guidelines
In this toolkit, we focus on three elements of practice essential to delivering good maternity care to parents with learning disabilities: Identifying need; Preparing for parenthood; and Supporting the journey to baby and beyond. For each of these three elements of practice, we will provide a practice discussion followed by actions for you to complete and questions for you to reflect on and discuss with colleagues. At the end of the toolkit there are useful resources or ‘tools’ to support you in delivering good care for parents with learning disabilities.
Maternity Passport
The Together Project produced a Maternity Passport to be completed with and held by parents with learning disabilities. This will support personalised preparation for parenthood and enable consistent and individualised information sharing with professionals, family and friends. The Maternity Passport seeks to support inter-professional collaboration by enabling each professional to see who else is involved in parents’ support circle and to understand what has, or has not, been discussed with them. The Maternity Passport can also support identification of gaps in support to alert professionals to necessary referrals.
How to access to the toolkit and passport
The Together Project Toolkit and Maternity Passport are free to use but we ask you to have regard to the following conditions on its use:
- Do not distribute this to anyone else – if anyone asks for a copy please ask them fill in the The Together Project resources questionnaire (via the download link below).
- If you use the guidance, or any part of it, we would be grateful if you would please:
- Acknowledge the authorship team.
- Send copies of any reports/papers that are produced to Dr Anna Cox (a.cox@surrey.ac.uk).
- Let us have any comments/suggestions that you feel might improve these resources so that your experience can be incorporated into subsequent updates.