OU partners with University of Oxford on learning disability research

The Open University and The University of Oxford have been awarded £900,000 by the National Institute for Health (NIHR) to investigate how to improve support for older people with learning disabilities and their family carers. The project is funded through a specific call issued by the NIHR Health Services and Delivery Research (HS&DR) programme for studies of community health and care services.

Co-Principal Investigator from the OU’s School of Health, Wellbeing and Social Care, Professor Louise Wallace said: “We aim to find out what works best when health and social care services support people to live at home, in supported living or residential care, to ensure that they can make the decisions that best suits them.”

There has been little research addressing how services can best support older people with learning disabilities (aged 40+) in later life. Of 900,000 adults with learning disabilities in England, two thirds live with family and one fifth exhibit ‘challenging behaviours’. These behaviours are often generated by a change in family or external circumstances, such as when an older family carer becomes unwell and unable to continue to provide home support. Little is known about how family carers plan for their own end of life and how this may be impacted by having lifelong caring responsibilities.

The proposal for this newly funded work emerged from an earlier study by the Embolden project, focusing on the experiences of older carers, where a key theme was concern about the future. A father, aged 72, said: ‘What keeps you awake at night is not knowing what the future holds for our son’. A mother, aged 92, said: ‘I just dread that day. What is going to happen? If they decide to uproot her I don’t think she’ll survive’.

Over 30 months, the project team, led by Co-Principal Investigators Associate Professor Sara Ryan from the University of Oxford and the OU’s Professor Wallace, will conduct research using methods including reviews of existing research and will gather information from families, health and care professionals to develop and evaluate new ways to help people make decisions about forward planning and end of life care.

Professor Wallace added: “I am leading on a part of the project that seeks to identify “what works” in health and social care, and housing services for people with learning disabilities as they get older.  We are looking for examples of services that help people live well, and work out beforehand what will work for them when the current family based option is no longer possible.”

The project also aims to produce new learning materials and supporting resources for families and professionals so they can be prepared for the challenges they may face. Two new courses will be hosted on the OpenLearn platform; one aimed at family carers, and one at practitioners, as well as a Continuing Professional Development resource for registered nurses and an information guide for family carers. This will be supported by a forum designed to share best practice amongst family carers and professionals, linked to the OU’s Carer Research and Knowledge Exchange Network (CAREN).

The project team

The wider project team includes academic researchers from Kingston University and St. George’s University (London) and Manchester Metropolitan University, a family carer from the Oxfordshire Family Support Network and the self-advocacy charity My Life My Choice. It will include advisers from a major supported living provider (Future Directions) and the professional body for social workers, the British Association of Social Workers, alongside a team of researchers from the OU’s School of Health, Wellbeing and Social Care. 

Project scope

The research study comprises five work packages (WP):  

1. Led by the OU's Dr Liz Tilley, WP 1 will review literature about the health and social care needs, service interventions and resources for (a) older people with learning disabilities with a focus on those with behaviours that challenge others, and (b) older family carers. 
2. Led by Professor Wallace, WP 2 will identify exemplars of good practice in residential, supported living and family support services and support interventions in England for older people with learning disabilities (and their family carers) with behaviours that challenge others.
3. WP3 will explore how people with learning disabilities with behaviours that challenge others and their family carers can be better supported in later life. This will be done by researching the commissioning and delivery of innovative supported living services using ethnographic case studies, one of which be led Dr Tilley.
4. WP4, led, by researchers at Kingston University, will co-produce decision aid tools to support future planning and end of life care discussions for carers, and evaluate their initial use.
5. WP5 will co-produce actionable recommendations for commissioners and providers, on line resources hosted by The University of Oxford, decision-aids for family carers and people with learning disabilities with behaviours that challenge others, and free online training materials hosted by the OU about caring in later life for the public and for professionals.

Find out more

Visit the Growing Older Planning Ahead website.  

The Growing Older - Planning Ahead project is independent research funded by the National Institute for Health Research (NIHR) under its Health Services and Delivery Research Programme (NIHR129491). The views expressed are those of the authors, and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.