A palliative care expert from London's Kingston University is teaming up with the University of Oxford and The Open University to investigate how to improve support for older people with learning disabilities and their family carers.
Professor Irene Tuffrey-Wijne, who was the world's first researcher to conduct studies into palliative care for people with learning disabilities, is part of a team of researchers who have been called on to take the £900,000 project forward. The National Institute for Health Research (NIHR) is funding the research.
It is estimated that some two-thirds of the 900,000 adults with learning disabilities in England live with family and about a fifth of these exhibit challenging behaviors, which are often generated by a change in family or external circumstances such as an older family carer becoming unwell and unable to continue to provide home support. Professor Irene Tuffrey-Wijne will lead one of the five work packages in the study.
It is hoped this study will increase the knowledge of how family carers plan for their own end of life and how this may be impacted by having lifelong caring responsibilities. It follows an earlier study which focused on the experiences of older carers and the key theme that resulted was concern about the future.
Professor Tuffrey-Wijne, who works in the Faculty of Health, Social Care and Education, run jointly by Kingston and St George's, University of London, said the study will tap into an area that has seen little research in the past.
This will be a key, landmark piece of research that could help so many families, carers and people with learning disabilities. This area is something that is usually forgotten about so I'm excited to be able to play a part in such important work."
The project will be split into five work packages, each focusing on a different area of study. Professor Tuffrey-Wijne will lead the one investigating, co-producing and testing a family-based support program to help families living with older people who have learning disabilities prepare for parental loss, transitions in care and end of life care for carers.
The first stage will see Professor Tuffrey-Wijne and her team conduct interviews and focus groups with older people with learning disabilities and family members. This will help to find out their experiences, hopes and concerns about current and future living situations, and what might help them plan for future living options outside the family home. They will also talk with members of the Oxford Family Support Network (OxFSN), who are made up of families with a person with learning disabilities.
The second part will involve regular meetings with a sample of parents, siblings and people with learning disabilities to find solutions to issues raised and develop a support program. They'll work together to identify activities and resources that can support how families prepare for parents' own end of life and the living options for their adult son or daughter.
The final year will test and explore how the newly-identified resources and aids help families of people who are at risk of developing behaviors that challenge others, which may include adults with severe or profound learning disabilities. It will also find out what training and support people need, and who is best from outside the family to support using these decisions.