Conceptualising loneliness for people with learning disabilities: a co-designed intervention to support social connectedness in social care settings
Loneliness is defined as a mismatch between the quantity and quality of the social relationships that we have, and those that we want. There are serious physical and mental health consequences associated with loneliness which is concerning for people with learning disabilities who are seven times more likely to be lonely than their non-disabled peers. Indeed, the stress caused by prolonged loneliness may be contributing to the increased risk of a range of health problems that people with learning disabilities experience; as well as the fact that on average they die 15-20 years earlier than the general population.
These poor outcomes show there is an urgent need to improve life chances for people with learning disabilities, yet to date little is understood of how loneliness is subjectively experienced by this group of complex and diverse people. Many people with learning disabilities are supported in formal care settings, often throughout their lives. Despite staff in these settings tending to feature prominently in the lives of the people they support, this role remains underused in its potential to facilitate social connectedness for people in receipt of support.
This study seeks to better understand how staff in care settings can help ameliorate loneliness for people they support by co-designing an intervention that will improve the ability of staff to help people with learning disabilities become more socially connected in their lives.
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
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?
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.
- 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.
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.
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.
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/#/
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
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