Growing Older, Planning Ahead
Research type
Research Study
Full title
Explore how older people with learning disabilities with behaviours that challenge others, and their family carers, can be better supported in later life by researching the commissioning and delivery of innovative services using ethnographic case studies.
IRAS ID
284854
Contact name
S.S. Ryan
Contact email
Sponsor organisation
Manchester Metropolitan University
Duration of Study in the UK
1 years, 3 months, 0 days
Research summary
This is part of a wider programme of work, `Improving the support for older people with learning disabilities and behaviours that challenge others, family and professional carers, and supporting end of life care planning for carers.’
Background
Of 900,000 people with learning disabilities in England, two thirds live with family and one fifth are estimated to engage in behaviours that challenge others. These behaviours often occur when someone is upset by change, including by a lack of advance planning to avoid crises. Little is known about end of life care planning by carers. UK policy and research has largely failed to address how services can best support this group.Aim
Our study aims to reduce behaviours that challenge others by improving care, support and forward planning for older people with learning disabilities (aged 40+) and their carers.Methods
We will study how services in the community support older people with learning disabilities and behaviours that challenge others. Teams from the Open University and Manchester Metropolitan University, as well as carer and people with learning disability co-researchers will work together to explore in-depth four settings in which good practice has been identified. We will spend time observing and interviewing people with learning disabilities, family members, staff, managers and commissioners. The settings chosen will be informed by the findings from earlier in the overall programme.
The researchers will keep detailed field notes including descriptions of the settings, interactions between people and staff, and with objects and the environment, emotions, impressions and reflections. We will also conduct a documentary review of the provider policies and guidance at each site.Outputs
Robust dissemination plans will reach carers, learning disabled people, commissioners, providers and the wider public.
People with learning disabilities are living longer but most people live with their families who are also getting older. This is because there are not enough suitable places for people to live, and family carers worry the person will not get the right care and a good life. Our research aimed to improve support for people with learning disabilities and their family carers to plan ahead for a good life.We focused on people who are labelled with ‘behaviours that challenge others’. We read what has been written about this area. We looked for and found examples of excellent support for people with learning disabilities. Researchers together with people with learning disabilities and family carers spent time hanging out with people where they live or spend their day to see their support. Then we had three meetings with everyone involved and discussed our research findings with people with learning disabilities, family carers, and professionals. We found that people can be supported to live good lives as they grow older. This can be living alone or with people they choose, it means having staff they like and who like them, and being supported to be active.
However, we found that ageing of people with learning disabilities is often ignored, and some people were not living good lives. We also found the label of ‘behaviours that challenge others’ is unhelpful. We worked with people with learning disabilities and family carers to make a set of cards with pictures and questions to help people plan ahead for a good life. We made recommendations to create a new plan for older people with learning disabilities to support people to lead good lives. This is very important because there is a lack of attention and support for people with learning disabilities as they age.
Has the registry been updated to include summary results?: No
If yes - please enter the URL to summary results:
If no – why not?: N/A
Did you follow your dissemination plan submitted in the IRAS application form (Q A51)?: No
If yes, describe or provide URLs to disseminated materials:
If pending, date when dissemination is expected:
If no, explain why you didn't follow it: We included 11 outputs in the original dissemination plan. All have been produce apart from 6 and 8; the Forum for support (6) staff and the podcast (8). This was because of a staff retirement.REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
21/LO/0062
Date of REC Opinion
1 Feb 2021
REC opinion
Further Information Favourable Opinion