Conceptualising loneliness for people with learning disabilities: a co-designed intervention to support social connectedness in social care settings
Start date
2022End date
2028Overview
This research, which forms the basis of an NIHR Advanced Fellowship, seeks to find innovative ways for staff working in full time learning disability settings to assist people they support in being more socially connected.
People with learning disabilities are highly susceptible to loneliness; and people living in full time support settings are vulnerable to loneliness in specific ways. Staff tend to feature prominently in the lives of the people for whom they care but this role remains underused in its potential to facilitate social connectedness for people in receipt of support. The strong causal link between loneliness and poor mental and physical health suggests there is an urgent need on the part of professional services to understand how people with learning disabilities can be better supported to be more socially connected in their lives.
Using findings from creative methods and ethnographic case studies undertaken with people with learning disabilities and in their support settings, this work will co-design an intervention that will rethink the support worker role in terms of its potential as a compassionate and empathic facilitator to social connectedness for people with learning disabilities.
This research seeks to be for the public benefit by improving understanding of how to achieve more compassionate and empathic care. In turn this could lead to increased quality of life and health for people with learning disabilities, thus in the long run helping to alleviate strain on health and care services.
This is a 67 month (@ 0.6 FTE) qualitative study consisting of three distinct but interrelated Phases.
Phase one: Conceptualising loneliness for people with learning disabilities using evidence review and creative methods
This will first comprise undertaking a scoping review to appraise and map the existing literature on loneliness and social connectedness to inform this project’s work with people with learning disabilities. Second, creative methods activities and a focus group will be undertaken with a small number of people with learning disabilities to build up a holistic picture of how these individuals express their experiences of loneliness and social connectedness.
Phase two: Ethnographic case studies
Here, in-depth ethnographic case studies will be undertaken with four different learning disability services. Building on Phase one material that will capture the views of people with learning disabilities, this Phase will seek to understand the wider context of people’s support to determine what this reveals of the facilitators and barriers to enabling social connectedness among people with learning disabilities in these settings.
Phase three: Co-designing an intervention
The findings from Phase one and Phase two will be used to co-design an intervention with individuals involved in learning disability services to develop guidance and training that will improve the ability of staff to help the people they support become more socially connected.
Aims and objectives
Research question
How do people with learning disabilities experience loneliness and how can understanding this better inform social care practitioners in facilitating meaningful social connections for the people they support?
Research aim
To conceptualise how people with learning disabilities experience loneliness and to co-design an intervention to support people with learning disabilities to become more socially connected in their lives.
Objectives
- To scope evidence and build a conceptual picture of loneliness, informed by the views of people with learning disabilities;
- To capture lived experiences of learning disability support settings to identify the facilitators and barriers to staff supporting people with learning disabilities to be socially connected;
To co-design an intervention to produce staff guidance and training that will improve the ability of staff to help the people they support become more socially connected.
Funding amount
£456,622.00
Funder
Team
Principal investigator
Dr Carys Banks
NIHR Research Fellow
Biography
Carys is a Research Fellow within the School of Health Sciences, based in the Workforce, Organisation and Wellbeing (WOW) research theme.
As an anthropologist working in health and care settings, Carys's interests focus on relations of care fostered in these environments and what this indicates about the human condition. Predominantly working ethnographically allows Carys to spend long periods with people, to focus on the minutiae of their everyday lives to understand how these often seemingly mundane encounters reveal something more fundamental about our lived experiences of the world.
Carys has particular expertise and interest in the care of people with learning disabilities. In 2021 she was awarded a prestigious NIHR Advanced Fellowship award which will seek to co-design an intervention that will assist social care staff in better supporting people with learning disabilities to be socially connected in their lives. More information can be found on her University of Surrey Project Page.
At Surrey, Carys works closely with Professor Caroline Nicholson and Professor Jill Maben in the School of Health Sciences. She is also informally mentored by Dr Hrafn Asgeirsson, a Senior Lecturer in Philosophy and Law.
Project mentors
Professor Jill Maben
Professor of Health Services Research and Nursing
Biography
Jill is a nurse and social scientist and her research focuses on supporting staff to care well for patients. Jill qualified as a Registered nurse at Addenbrookes in Cambridge and studied History at UCL, before undertaking her Masters in Nursing at King's College London and completing her PhD at the University of Southampton. She completed her PGCE at the London School of Hygiene and Tropical Medicine in 2007. Jill was deputy Director (2007-2010) and Director (2011-2014) of the Policy Research Programme's National Nursing Research Unit at King's College London.
Jill was awarded an OBE in June 2014 for services to nursing and healthcare. In 2013 she was in the Health Services Journal ‘Top 100 leaders’ and was also included on Health Service Journal’s inaugural list of Most Inspirational Women in Healthcare the same year.
Jill is passionate about creating positive practice environments for NHS staff and supporting staff in the work they do caring for patients and her programme of research has highlighted the links between staff experiences of work and patient experiences of care- https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/081819213/#/ This was one of the first studies to demonstrate relationships between staff wellbeing and patient experience at the team and individual level demonstrating that staff wellbeing is an important antecedent of patient care performance.
Jill's doctoral work examined what supported and what prevented newly qualified nurses implementing their ideals and values in practice, highlighting how ideals and values of new nursing students can become compromised and crushed in poor work environments. She also recently completed the first national evaluation of Schwartz Centre Rounds in the UK: “A Longitudinal National Evaluation of Schwartz Centre Rounds®: an intervention to enhance compassion in relationships between staff and patients through providing support for staff and promoting their wellbeing” [https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/130749/#/] she has developed a short film from this work: Understanding Schwartz Rounds: Findings from a National Evaluation https://www.youtube.com/watch?v=C34ygCIdjCo
Other recent studies include an evaluation of patient and staff experiences and safety outcomes of a move to 100% single hospital bedrooms. [https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/10101342/#/] and interventions to support healthcare staff including Schwartz Center Rounds and to improve relational care for older people in hospital [https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/1212910/#/] The single room evaluation work is now being replicated in Australia; Holland and Denmark.
Current studies include the Impact of Covid on Nurses (ICON) (Burdett Trust; Florence Nightingale Foundation and the Colt Trust) and NIHR studies:
Care Under Pressure 2: Caring for the Carers a realist review of interventions to minimise the incidence of mental ill-health in nurses, midwives and paramedics: www.journalslibrary.nihr.ac.uk/programmes/hsdr/NIHR129528/#/ and
Strategies to address unprofessional behaviours among staff in acute healthcare settings: a realist review: www.journalslibrary.nihr.ac.uk/programmes/hsdr/NIHR131606/#/
Professor Caroline Nicholson
Professor of Palliative Care and Ageing
Biography
Caroline is a Clinical Academic Nurse and her research forwards understanding and care for older people living with complex needs. She is particularly interested in the transitions that occurs in the last phase of life. Caroline qualified as a Registered Nurse at St Bartholomew’s Hospital London. She worked as a specialist Palliative Care Nurse before undertaking a combined BSc (Hons) in Community Nursing DN/HV Certs at King’s College London. She went on to an MSc in Medical Anthropology at Brunel University London before completing her PhD at City University, London in 2009. She is a FHEA from the Institute of Education and holds a diploma in psycho-dynamic approaches to old age from the Tavistock and Portman NHS Foundation Trust, London
Caroline is a HEE/NIHR Senior Clinical Academic Lecturer, working between the School of Health Sciences at Surrey University and St Christopher’s Hospice, London. She is passionate in her belief that everyone should have access to the best care and support in the final years of their life. She has a long-held interest in the experiences and palliative care needs of older people and their families and is co-lead in End of life Care for the British Geriatrics Society.
Caroline studies the experiences and care of older people living with complex needs across care settings, to develop interventions which equally value quality of life with quantity of years in old age. She has a long-held interest in the experience of older people living with frailty, and their capabilities as well as their current and future vulnerabilities. Her work also includes the development of care services and a workforce that can recognize, facilitate and enhance the processes and outcomes of high-quality palliative and supportive care. Caroline is committed to building the next generation of clinical academics and is an NIHR Nurse Training Advocate . Research expertise includes participatory action research, narrative research, mixed method research and complex intervention development.
Professor Rachel Forrester-Jones
Director, School of Health Studies, University of Western Ontario, Canada
Professor Christine Bigby
Director of La Trobe University’s Living with Disability Research Centre, Australia
News
In the media
Outputs
Sometimes people with learning disabilities need a hug – but support staff aren’t meant to give them - article in The Conversation
Loneliness in the lives of people with learning disabilities: where are we going wrong? - Academia Letters 2021 publication
Research themes
Find out more about our research at Surrey: