The Together Project: Supporting the delivery of good practice in maternity services for parents with learning disabilities

Start date

September 2019

End date

Ongoing

Project website

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Abstract

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

  1. What are key stakeholders’ views of ‘good’ maternity care services for parents with learning disabilities?
  2. 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

Co-investigators

Scott Watkins profile image

Mr Scott Watkins

Expert by experience

Researcher

Catherine Parsons profile image

Dr Catherine Parsons

Research Fellow

Outputs

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:

  1. 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).
  2. If you use the guidance, or any part of it, we would be grateful if you would please:
    1. Acknowledge the authorship team.
    2. Send copies of any reports/papers that are produced to Dr Anna Cox (a.cox@surrey.ac.uk).
    3. Let us have any comments/suggestions that you feel might improve these resources so that your experience can be incorporated into subsequent updates.

Download the toolkit and passport

Research themes

Find out more about our research at Surrey: