Plain English Summary
Background and study aims
Of 900,000 learning disabled adults in England, two thirds live with family and one fifth are estimated to engage in behaviours that challenge. These behaviours often occur when someone is upset by change. Clear factors can generate distress for older learning disabled people including family carers growing frailer, early development of chronic conditions including dementia, and a lack of advance planning to avoid crises. Little is known about how family carers plan for their own end of life. A recent project, Embolden, focused on the experiences of older carers. A key theme was concern about the future. One dad, 72, said ‘What keeps you awake at night is not knowing what the future holds for our son’. A mum, 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’. There has been little focus on how to address how services can best support older learning disabled people (aged 40+) and behaviours that challenge in later life. This study aims to improve support in this area by producing effective and workable recommendations and resources for future planning for older learning disabled people with behaviours that challenge, and end of life care planning for carers. The researchers will:
1. Review what is known about older learning disabled people with behaviours that challenge and family carers
2. Find out what support, resources and services exist for older learning disabled people with behaviours that challenge and family carers and identify examples of good practice
3. Explore how these two groups can be better supported by studying four examples of good support in England
4. Interview older family carers and learning disabled people about planning for the future and the end of life care plans for the carers, develop and evaluate resources to help people make decisions about this
5. Work with a range of people including older learning disabled people, family carers, self-advocacy groups, social workers, support workers, and people who provide, pay for and make sure services are good to produce workable recommendations to improve support for older learning disabled people and family carers.
The researchers will produce: recommendations for service providers and commissioners; decision aid tools and resources for older learning disabled people, family carers and support workers; two free courses for family carers and support workers hosted on the Open University OpenLearn platform; a continuing professional development course for social workers hosted by the British Association of Social Workers; a support worker forum to share best practice hosted by the Open University; a film about the project findings and podcast about the research process on Socialcaretalk.org (sister site to Healthtalk.org); articles aimed academic and lay audiences.
The researchers have a robust plan to make sure our project outputs reach the people they are aimed at. These include learning disabled people, family carers, self-advocacy and carer groups, social workers, support workers, service providers, commissioners and the wider public. The project team includes two learning disabled people and a family carer and learning disabled people and carers will be involved in the research.
Who can participate?
The research will involve all people who know about services for older people with learning disabilities and support for older family carers, for example NHS/social care commissioners, service providers and managers, clinicians, voluntary organisations and other professionals. It will also involve older people with learning disabilities (aged 40+), parent carers, siblings and the public.
What does the study involve?
The researchers would like to talk to senior leaders and commissioners in England of the NHS services for adult learning disabilities and end of life care, and adult social care; senior directors of the providers of supported living and residential care for older adults with learning disabilities including those whose behaviour challenges others and professional and public networks of those interested in this topic.
The research team will spend time with people and staff both within and outside selected care settings. They will conduct observations over several months, study documents and interview people with learning disabilities, family carers and staff.
The researchers will also conduct interviews and focus groups with older people with learning disabilities (aged 40+) living at home, elderly parental carers, and their sisters and brothers, to explore experiences, hopes and concerns about current and future living situations.
With a smaller sample of six parents and six people with learning disabilities the researchers will meet fortnightly for 6 months to work out solutions and develop a support programme. They will do this by, for example, creating a short film based on the interviews and discussions; watching this together with families, carers, people with learning disabilities and health/social care professionals; and working in small groups to identify activities and resources that will support how families prepare for parents’ own end of life and the living options for their adult son or daughter. This will help them to develop resources to help with future planning and decisions (“decision-aids”).
The researchers will work with ten family carers and their adult son/daughter with learning disabilities to test out the decision-aids as part of their own family decision-making. They will ask families to use diaries; researchers will observe meetings and take notes to see how the decision-aids are used and decisions are reached and they will interview them to find out more about their views.
What are the possible benefits and risks of participating?
This study will allow the researchers to think about how services for older people with learning disabilities can be improved and provide resources for people with learning disabilities, family carers, self-advocacy and carer groups, social workers, support workers, service providers, commissioners and the wider public. It is possible that people taking part in the study may feel some distress. The researchers are experienced in managing this.
Where is the study run from?
University of Oxford (UK)
When is the study starting and how long is it expected to run for?
September 2020 to February 2023
Who is funding the study?
National Institute for Health Research (NIHR) (UK)
Who is the main contact?
Dr Sara Ryan
Improving the support for older people with learning disabilities and behaviours that challenge others, family and professional carers, and end of life care planning for carers
To improve support for family (and professional) carers and older people with learning disabilities (aged 40+) with behaviours that challenge others by producing effective and workable recommendations and resources including end of life care planning for carers.
Work package 2: Approved 14/07/2020, The Open University Human Research Ethics Committee (Human Research Ethics Committee - Research, Enterprise and Scholarship (RES), The Open University, Walton Hall, Milton Keynes, MK7 6AA, UK; +44 (0)1908 654849; firstname.lastname@example.org), ref: HREC/3639
Work package 3 ethics approval pending
Work package 4 ethics approval pending
Work package 1: rapid scoping reviews
Work package 2: qualitative mapping exercise
Work package 3: qualitative observational study (service provision)
Work package 4: qualitative observational study (end of life care)
Work package 5: co-production of resources and dissemination
Primary study design
Secondary study design
Quality of life
Patient information sheet
Not available in web format, please use the contact details to request a participant information sheet
Social care - people with learning disabilities and carers
1. Two rapid reviews focusing on older people with learning disabilities with behaviours that challenge and older carers
2. A scoping exercise involving interviews, documentary analysis with key NHS and local authority commissioners and providers, specialist third sector providers in England, and via social media to the wider learning disability community, to identify exemplar services for older people with learning disabilities and behaviours that challenge others
3. A 4 site ethnography of service exemplars involving observations, interviews and documentary analysis
4. Focus groups and interviews with older carers around end of life care planning, develop and test decision aid interventions using experience-based co-design methods
5. Co-produce implementable recommendations for service improvement and innovative dissemination plans for the uptake of the project outputs
Primary outcome measure
Qualitative methods will be used:
1. To develop an understanding of existing evidence about the health (physical, mental and social) needs, service interventions and resources for family carers and older people with learning disabilities with a focus on those with behaviours that challenge in transition to greater supported care, including end of life care for carers (WP1).
2. Identify exemplars of good practice in services and support interventions in the UK for older people with learning disabilities, and their family and professional carers, with behaviours that challenge towards end of life (WP2).
3. To explore how older people with learning disabilities with behaviours that challenge and their carers can be better supported in later life by researching the commissioning and delivery of exemplar supported living services using ethnographic case studies (WP3).
4. To co-produce decision aid tools to support future planning and end of life care discussions for carers and future planning for older people with learning disabilities and evaluate their initial use (WP4).
Secondary outcome measures
Qualitative methods will be used to co-produce actionable recommendations for commissioners and providers, resources and decision-aids for carers and people with learning disabilities with behaviours that challenge, and online training materials about care in later life for social workers and professional carers (WP5).
Overall trial start date
Overall trial end date
Reason abandoned (if study stopped)
Participant inclusion criteria
WP2 MAPPING AND SCOPING EXERCISE - one of the following:
1. NHSE regional lead for learning disabled and/or the lead for end of life care
2. Key staff from Sustainability and Transformation Partnerships
3. Commissioner of services
4. Key staff from service providers
5. Key staff from relevant voluntary organisations
6. Public or professional with an interest in services for older learning disabled people and support for older carers
4 case study sites. In each:
1. 5-10 people with learning disabilities aged 40+
2. 5-8 carers
3. 4-5 support workers
4. 1-2 relevant commissioners and service managers
1. People with learning disabilities (aged 40+) who live at home with an elderly parent who have some verbal ability and who are able to give informed consent
2. Parent carers with an adult child with learning disabilities (aged 40+) living in the family home
3. Siblings of people with learning disabilities (aged 40+) who live with elderly parents
4. Siblings of people with learning disabilities (aged 40+) who had to leave the parental home following parental death within the past 3 years
Target number of participants
WP2 up to 70; WP3 80-100; WP4 stage one 44, stage two 12, stage three 20
Participant exclusion criteria
Does not meet inclusion criteria
Recruitment start date
Recruitment end date
Countries of recruitment
Trial participating centre
University of Oxford, Nuffield Department of Primary Care Health Sciences
Radcliffe Observatory Quarter Woodstock Road
Trial participating centre
The Open University
Faculty of Wellbeing, Education and Language Studies The Open University Walton Hall
Trial participating centre
Manchester Metropolitan University
Faculty of Health, Psychology and Social Care Manchester Metropolitan University Brooks Building 53 Bonsall Street
Trial participating centre
Kingston and St. George's University
Centre for Health and Social Care Research River House 53–57 High Street Kingston upon Thames
National Institute for Health Research
Funding Body Type
Funding Body Subtype
Results and Publications
Publication and dissemination plan
1. Implementable recommendations for providers and commissioners to improve support for carers and older people with learning disabilities and behaviours that challenge. AUDIENCE: commissioners, service providers, NHS England, Care Quality Commission, Association of Directors of Adult Social Services (ADASS), Association of Directors of Children’s Services, Care England, policy makers, voluntary sector.
2. Decision aid tools and resources for family carers and end of life care developed in partnership with and promoted by carer organisations and published on Socialcaretalk.org. AUDIENCE: carers, service providers, policy makers, voluntary sector.
3. A free course for family carers on learning disability, ageing and behaviours that challenge, hosted on The Open University's OpenLearn platform with up to 3 hours of learning material, including interactive multi-media content, reflective exercises and key findings from the research. The learning material will provide family carers with key knowledge they require to advocate effectively for themselves and their family member with learning disabilities and behaviours that challenge and will include practical tips on planning for the future, drawing on best practice identified through the research. The course will be hosted on the OpenLearn platform for five years with commitment by the OU research team to maintain and update the resources where needed on an annual basis. These materials will draw upon OU pedagogical expertise in the design and delivery of online learning. AUDIENCE: carers, service providers, commissioners, NHS England, Care Quality Commission, policy makers, voluntary sector.
4. A free course on learning disability, ageing and behaviours, targeted at support workers working alongside family carers and people with learning disabilitites with behaviours that challenge as they age. The material will include short videos, practice guidance, podcasts, and links to the publications from the research. This course will comprise approximately 6 hours of learning, focusing on the law, examples of best practice, working through complex cases and advocating for more person-centred outcomes within financial or commissioning constraints. The course will be aligned to the updated Skills for Care Learning Disabilities Core Skills Education and Training Framework and will align where possible to Tiers 1 and 2 of the End of Life Care Core Skills Education and Training Framework (Health Education England, Skills for Health, and Skill for Care 2017). It will present key findings from the research and will include engaging multi-media, interactive learning activities, reflective exercises and self-assessment through quizzes. The course will be hosted as in (3) above. AUDIENCE: support staff, service providers, commissioners, NHS England.
5. A separate Continuous Professional Development Programme (CPD) developed specifically for social workers who have statutory duties to assess and plan care for people with learning disabilities and carers under the Care Act 2014, and to safeguard people in the community. The CPD will be developed by BASW, based on relevant practice guidance: the Knowledge and Skills Statement for Social Workers in Adult Services and Capabilities Statement for Social Workers Working with Adults with Learning Disability. Current statutory guidance also specifies prioritisation of people living in the community as opposed to hospitals and as the research will generate knowledge about the care and support of PWLD with behaviours that challenge, this will aid care planning on prevention and de-escalation of crises within the community which lead to hospitalisation.
6. Forum for support staff to share best practice hosted by The Open University and linked to The Open University's Carer Research and knowledge Exchange Network (CAREN). AUDIENCE: carers, support staff, service providers, voluntary sector
7. Films from WP3 and WP4 published on Socialcaretalk.org. AUDIENCE: carers, service providers, commissioners, NHS England, Care Quality Commission, policy makers, voluntary sector
8. Podcast published on Socialcaretalk and Soundcloud capturing the experience of the process of the research project and key findings. AUDIENCE: academics, self-advocacy and carers groups, voluntary sector
9. 5-6 academic peer-review publications in open-access social science and social care journals. AUDIENCE: academics, social workers and policy makers
10. Two conference presentations at annual national and at least one international social care
conferences. AUDIENCE: academics and social care professionals
11. Two publications in specialist and national media. AUDIENCE: carers, service providers, commissioners, NHS England, Care Quality Commission, policy makers, public, voluntary sector
12. The protocol will be available on the funder's website in due course
IPD sharing statement
De-identified qualitative data will be available for 10 years post study completion to academic researchers with an affiliation to a research institution within the United Kingdom or another country within the EU for secondary analysis, provided consent for such use has been obtained from the participant and subject to approval by appropriate authorities at the University of Oxford or its collaborating institutions. Requests for data after the completion of the study should be submitted to Dr Sara Ryan, Principal Investigator (email@example.com), copied to firstname.lastname@example.org.
Intention to publish date
Participant level data
Available on request
Basic results (scientific)