Understanding and using experiences of social care to guide service improvements: translating a co-design approach from health to social care.

ACCELERATED EXPERIENCE-BASED CO-DESIGN CATALYST FILM CO-PRODUCTION EVALUATION HEALTHTALK LONELINESS MIXED-METHODS QUALITATIVE INTERVIEWS QUALITATIVE RESEARCH SERVICE IMPROVEMENT SOCIAL CARE SOCIALCARETALK STIGMA THEMATIC ANALYSIS TOUCH POINTS

Journal

Health and social care delivery research
ISSN: 2755-0079
Titre abrégé: Health Soc Care Deliv Res
Pays: England
ID NLM: 9918470788706676

Informations de publication

Date de publication:
Aug 2024
Historique:
medline: 12 9 2024
pubmed: 12 9 2024
entrez: 12 9 2024
Statut: ppublish

Résumé

Local authorities need to find new ways of collecting and using data on social care users' experiences to improve service design and quality. Here we draw on and adapt an approach used in the healthcare improvement field, accelerated experience-based co-design, to see if it can be translated to social care. We use loneliness support as our exemplar. To understand how loneliness is understood and experienced by members of the public and characterised by social care and voluntary sector staff; to identify service improvements around loneliness support; to explore whether accelerated experience-based co-design is effective in social care; and to produce new resources for publication on Socialcaretalk.org. Discovery phase: in-depth interviews with a diverse sample of people in terms of demographic characteristics with experience of loneliness, and 20 social care and voluntary staff who provided loneliness support. Production of a catalyst film from the public interview data set. Co-design phase: exploring whether the accelerated experience-based co-design approach is effective in one local authority area via a series of three workshops to agree shared priorities for improving loneliness support (one workshop for staff, another for people with experience of local loneliness support, and a third, joint workshop), followed by 7-monthly meetings by two co-design groups to work on priority improvements. A process evaluation of the co-design phase was conducted using interviews, ethnographic observation, questionnaires and other written material. Accelerated experience-based co-design demonstrated strong potential for use in social care. Diverse experiences of participants and fuzzy boundaries around social care compared to health care widened the scope of what could be considered a service improvement priority. Co-design groups focused on supporting people to return to pre-pandemic activities and developing a vulnerable passenger 'gold standard' award for taxi drivers. This work generated short-term 'wins' and longer-term legacies. Participants felt empowered by the process and prospect of change, and local lead organisations committed to take the work forward. Using an exemplar, loneliness support, that does not correspond to a single pathway allowed us to comprehensively explore the use of accelerated experience-based co-design, and we found it can be adapted for use in social care. We produced recommendations for the future use of the approach in social care which include identifying people or organisations who could have responsibility for implementing improvements, and allowing time for coalition-building, developing trusted relationships and understanding different perspectives. COVID-19 temporarily affected the capacity of the local authority Project Lead to set up the intervention. Pandemic work pressures led to smaller numbers of participating staff and had a knock-on effect on recruitment. Staff turnover within Doncaster Council created further challenges. Exploring the approach using a single pathway, such as assessing eligibility for care and support, could add additional insights into its transferability to social care. This trial is registered as Current Controlled Trials ISRCTN98646409. This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128616) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 27. See the NIHR Funding and Awards website for further award information. Local councils need to find new ways of using people’s experiences of social care to improve services. We explored whether a way of improving health services can improve social care services. ‘Experience-based co-design’ is a complicated name. It means working with people who use health or social care services to improve that service, and interviewing people as part of this process. Accelerated experience-based co-design uses existing interviews instead of new interviews. To see if the approach works in social care, we chose the topic of loneliness because many of us experience loneliness. We worked with Doncaster City Council because it has been focusing on loneliness. We interviewed 37 people across England and recorded what they said about loneliness. We made a film about their experiences that showed examples of good or poor care. We call these touch points. We held three workshops in Doncaster. Workshop 1 was with people who work in social care as paid workers or volunteers, and workshop 2 was with people who use social care services. In both workshops, people made a list of types of support that needed improvement. Both groups attended workshop 3, watched the film and decided what to focus on from the two lists. Two groups were set up to work on improving support for loneliness in Doncaster. Each group met seven times. One focused on taxi services, and the other group focused on supporting people to do activities they did before the pandemic. A researcher attended these meetings and talked with everyone involved to see how this approach worked. At the end, there was a celebration event. We found that loneliness is complicated. We found the approach to improving support does work in social care, but it needs some changes because social care is not like health care. We suggest ways the approach can be done differently.

Sections du résumé

Background UNASSIGNED
Local authorities need to find new ways of collecting and using data on social care users' experiences to improve service design and quality. Here we draw on and adapt an approach used in the healthcare improvement field, accelerated experience-based co-design, to see if it can be translated to social care. We use loneliness support as our exemplar.
Objectives UNASSIGNED
To understand how loneliness is understood and experienced by members of the public and characterised by social care and voluntary sector staff; to identify service improvements around loneliness support; to explore whether accelerated experience-based co-design is effective in social care; and to produce new resources for publication on Socialcaretalk.org.
Design and methods UNASSIGNED
Discovery phase: in-depth interviews with a diverse sample of people in terms of demographic characteristics with experience of loneliness, and 20 social care and voluntary staff who provided loneliness support. Production of a catalyst film from the public interview data set. Co-design phase: exploring whether the accelerated experience-based co-design approach is effective in one local authority area via a series of three workshops to agree shared priorities for improving loneliness support (one workshop for staff, another for people with experience of local loneliness support, and a third, joint workshop), followed by 7-monthly meetings by two co-design groups to work on priority improvements. A process evaluation of the co-design phase was conducted using interviews, ethnographic observation, questionnaires and other written material.
Results UNASSIGNED
Accelerated experience-based co-design demonstrated strong potential for use in social care. Diverse experiences of participants and fuzzy boundaries around social care compared to health care widened the scope of what could be considered a service improvement priority. Co-design groups focused on supporting people to return to pre-pandemic activities and developing a vulnerable passenger 'gold standard' award for taxi drivers. This work generated short-term 'wins' and longer-term legacies. Participants felt empowered by the process and prospect of change, and local lead organisations committed to take the work forward.
Conclusions UNASSIGNED
Using an exemplar, loneliness support, that does not correspond to a single pathway allowed us to comprehensively explore the use of accelerated experience-based co-design, and we found it can be adapted for use in social care. We produced recommendations for the future use of the approach in social care which include identifying people or organisations who could have responsibility for implementing improvements, and allowing time for coalition-building, developing trusted relationships and understanding different perspectives.
Limitations UNASSIGNED
COVID-19 temporarily affected the capacity of the local authority Project Lead to set up the intervention. Pandemic work pressures led to smaller numbers of participating staff and had a knock-on effect on recruitment. Staff turnover within Doncaster Council created further challenges.
Future work UNASSIGNED
Exploring the approach using a single pathway, such as assessing eligibility for care and support, could add additional insights into its transferability to social care.
Trial registration UNASSIGNED
This trial is registered as Current Controlled Trials ISRCTN98646409.
Funding UNASSIGNED
This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128616) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 27. See the NIHR Funding and Awards website for further award information.
Local councils need to find new ways of using people’s experiences of social care to improve services. We explored whether a way of improving health services can improve social care services. ‘Experience-based co-design’ is a complicated name. It means working with people who use health or social care services to improve that service, and interviewing people as part of this process. Accelerated experience-based co-design uses existing interviews instead of new interviews. To see if the approach works in social care, we chose the topic of loneliness because many of us experience loneliness. We worked with Doncaster City Council because it has been focusing on loneliness. We interviewed 37 people across England and recorded what they said about loneliness. We made a film about their experiences that showed examples of good or poor care. We call these touch points. We held three workshops in Doncaster. Workshop 1 was with people who work in social care as paid workers or volunteers, and workshop 2 was with people who use social care services. In both workshops, people made a list of types of support that needed improvement. Both groups attended workshop 3, watched the film and decided what to focus on from the two lists. Two groups were set up to work on improving support for loneliness in Doncaster. Each group met seven times. One focused on taxi services, and the other group focused on supporting people to do activities they did before the pandemic. A researcher attended these meetings and talked with everyone involved to see how this approach worked. At the end, there was a celebration event. We found that loneliness is complicated. We found the approach to improving support does work in social care, but it needs some changes because social care is not like health care. We suggest ways the approach can be done differently.

Autres résumés

Type: plain-language-summary (eng)
Local councils need to find new ways of using people’s experiences of social care to improve services. We explored whether a way of improving health services can improve social care services. ‘Experience-based co-design’ is a complicated name. It means working with people who use health or social care services to improve that service, and interviewing people as part of this process. Accelerated experience-based co-design uses existing interviews instead of new interviews. To see if the approach works in social care, we chose the topic of loneliness because many of us experience loneliness. We worked with Doncaster City Council because it has been focusing on loneliness. We interviewed 37 people across England and recorded what they said about loneliness. We made a film about their experiences that showed examples of good or poor care. We call these touch points. We held three workshops in Doncaster. Workshop 1 was with people who work in social care as paid workers or volunteers, and workshop 2 was with people who use social care services. In both workshops, people made a list of types of support that needed improvement. Both groups attended workshop 3, watched the film and decided what to focus on from the two lists. Two groups were set up to work on improving support for loneliness in Doncaster. Each group met seven times. One focused on taxi services, and the other group focused on supporting people to do activities they did before the pandemic. A researcher attended these meetings and talked with everyone involved to see how this approach worked. At the end, there was a celebration event. We found that loneliness is complicated. We found the approach to improving support does work in social care, but it needs some changes because social care is not like health care. We suggest ways the approach can be done differently.

Identifiants

pubmed: 39264767
doi: 10.3310/MYHT8970
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

1-84

Références

McMullin C. Individual, group, and collective co-production: the role of public value conceptions in shaping co-production practices. Adm Soc 2023;55:239–63. https://doi.org/10.1177/00953997221131790
Coulter A, Locock L, Ziebland S, Calabrese J. Collecting data on patient experience is not enough: they must be used to improve care. BMJ 2014;348:g2225. https://doi.org/10.1136/bmj.g2225
Robert G, Cornwell J, Locock L, Purushotham A, Sturmey G, Gager M. Patients and staff as codesigners of healthcare services. BMJ 2015;350:g7714. https://doi.org/10.1136/bmj.g7714
Blackwell RW, Lowton K, Robert G, Grudzen C, Grocott P. Using experience-based co-design with older patients, their families and staff to improve palliative care experiences in the emergency department: a reflective critique on the process and outcomes. Int J Nurs Stud 2017;68:83–94. https://doi.org/10.1016/j.ijnurstu.2017.01.002
Robert G. Participatory Action Research: Using Experience-Based Co-Design to Improve the Quality of Healthcare Services. In Ziebland S, Coulter A, Calabrese JD, Locock L, editors. Understanding and Using Health Experiences: Improving Patient Care. Oxford: Oxford University Press; 2013. pp. 138–49. https://doi.org/10.1093/acprof:oso/9780199665372.003.0014
Locock L, Robert G, Boaz A, Vougioukalou S, Shuldham C, Fielden J, et al. Testing accelerated experience-based co-design: a qualitative study of using a national archive of patient experience narrative interviews to promote rapid patient-centred service improvement. Health Serv Delivery Res 2014;2. https://doi.org/10.3310/hsdr02040
NHS Digital. Latest Key Statistics on Adult Social Care Include Council Spending in 2021–22: Statistical Press Release. 2022. URL: https://digital.nhs.uk/news/2022/adult-social-care-stats-2021-22 (accessed 26 January 2023).
Skills for Care. The State of the Adult Social Care Sector and Workforce in England, 2022 (Leeds, 2022). 2022. URL: www.skillsforcare.org.uk/Adult-Social-Care-Workforce-Data/Workforce-intelligence/documents/State-of-the-adult-social-care-sector/The-state-of-the-adult-social-care-sector-and-workforce-2022.pdf (accessed 26 January 2023).
NHS Digital. Adult Social Care Activity and Finance Report, England 2021–22. URL: https://digital.nhs.uk/news/2022/adult-social-care-stats-2021-22 (accessed 10 February 2022).
Baxter K, Glendinning C. People Who Fund Their Own Social Care. A Scoping Review. London: School for Social Care Research; 2014. URL: www.sscr.nihr.ac.uk/PDF/ScopingReviews/SR11.pdf (accessed 26 January 2023).
Baxter K, Heavey E, Birks Y. Choice and control in social care: experiences of older self-funders in England. Soc Policy Adm 2020;54:460–74. https://doi.org/10.1111/spol.12534
Masterson D, Areskoug Josefsson K, Robert G, Nylander E, Kjellström S. Mapping definitions of co-production and co-design in health and social care: a systematic scoping review providing lessons for the future. Health Expect 2022;25:902–13. https://doi.org/10.1111/hex.13470
Bovaird T. Beyond engagement and participation: user and community coproduction of public services. Public Adm Rev 2007;67:846–60. https://doi.org/10.1111/j.1540-6210.2007.00773.x
McMullin C, Needham C. Co-Production in Healthcare. In Brandsen T, Verschuere B, Steen T, editors. Co-Production and Co-Creation. Engaging Citizens in Public Services. New York: Routledge; 2018. pp. 151–60.
Dunston R, Lee A, Boud D, Brodie P, Chiarella M. Co-production and health system reform – from re-imagining to re-making. Aust J Public Adm 2009;68:39–52. https://doi.org/10.1111/j.1467-8500.2008.00608.x
Bevir M, Needham C, Waring J. Inside co-production: ruling, resistance, and practice. Soc Policy Adm 2019;53:197–202. https://doi.org/10.1111/spol.12483
Bovaird T, Loeffler E. From engagement to co-production: the contribution of users and communities to outcomes and public value. Voluntas 2012;23:1119–38. https://doi.org/10.1007/s11266-012-9309-6
Vennik FD, Van de Bovenkamp HM, Putters K, Grit KJ. Co-production in healthcare: rhetoric and practice. Int Rev Adm Sci 2016;82:150–68.
Osborne SP, Radnor Z, Strokosch K. Co-production and the co-creation of value in public services: a suitable case for treatment? Public Manag Rev 2016;18:639–53. https://doi.org/10.1080/14719037.2015.1111927
Donetto S, Tsianakas V, Robert G. Using Experience-Based Co-Design (EBCD) to Improve the Quality of Healthcare: Mapping Where We Are Now and Establishing Future Directions. London: King’s College London; 2014. pp. 5–7.
McIntyre A. Participatory Action Research. London: SAGE Publications Ltd; 2007.
Bate P, Robert G. Bringing User Experience to Healthcare Improvement: The Concepts, Methods and Practices of Experience-Based Design. London: Radcliffe Publishing; 2007.
Woods A, Springham N. On learning from being the in-patient. Int J Art Ther 2011;16:60–8. https://doi.org/10.1080/17454832.2011.603697
Springham N, Robert G. Experience based co-design reduces formal complaints on an acute mental health ward. BMJ Qual Improv Rep 2015;4:u209153.w3970. https://doi.org/10.1136/bmjquality.u209153.w3970
Mulvale G, Moll S, Miatello A, Murray-Leung L, Rogerson K, Sassi RB. Co-designing services for youth with mental health issues: novel elicitation approaches. Int J Qual Methods 2019;18:1609406918816244. https://doi.org/10.1177/1609406918816244
Dimopoulos-Bick TL, O’Connor C, Montgomery J, Szanto T, Fisher M, Sutherland V, et al. ‘Anyone can co-design?’: a case study synthesis of six experience-based co-design (EBCD) projects for healthcare systems improvement in New South Wales, Australia. Patient Exp J 2019;6:93–104. https://doi.org/10.35680/2372-0247.1365
Adams M, Maben J, Robert G. Improving Patient-Centred Care Through Experience-Based Co-Design (EBCD): An Evaluation of the Sustainability and Spread of EBCD in a Cancer Centre. London: King’s College London; 2013. URL: https://silo.tips/download/improving-patient-centred-care-through-experience-based-co-design-ebcd-an-evalua (accessed 26 January 2023).
Ramos M, Bowen S, Wright PC, Ferreira MGG, Forcellini FA. Experience based co-design in healthcare services: an analysis of projects barriers and enablers. Des Health 2020;4:276–95. https://doi.org/10.1080/24735132.2020.1837508
Girling M, Le Couteur A, Finch T. Experience-based co-design (EBCD) with young people who offend: innovating methodology to reach marginalised groups. PLOS ONE 2022;17:e0270782. https://doi.org/10.1371/journal.pone.0270782
Gander-Zaucker S, Unwin GL, Larkin M. The feasibility and acceptability of an experience-based co-design approach to reducing domestic abuse. Societies 2022;12:93. https://doi.org/10.3390/soc12030093
Barker RE, Brighton LJ, Maddocks M, Nolan CM, Patel S, Walsh JA, et al. Integrating home-based exercise training with a hospital at home service for patients hospitalised with acute exacerbations of COPD: developing the model using accelerated experience-based co-design. Int J Chron Obstruct Pulmon Dis 2021;16:1035–49. https://doi.org/10.2147/COPD.S293048
Bielinska AM, Archer S, Darzi A, Urch C. Co-designing an intervention to increase uptake of advance care planning in later life following emergency hospitalisation: a research protocol using accelerated experience-based co-design (AEBCD) and the behaviour change wheel (BCW). BMJ Open 2022;12:e055347. https://doi.org/10.1136/bmjopen-2021-055347
Steen T, Brandsen T, Verschuere B. The Dark Side of Co-Creation and Co-Production: Seven Evils. In Brandsen T, Verschuere B, Steen T, editors. Co-Production and Co-Creation. Engaging Citizens in Public Services. New York: Routledge; 2018. pp. 284–93.
Brandsen T, Helderman JK. The trade-off between capital and community: the conditions for successful co-production in housing. Voluntas 2012;23:1139–55. https://doi.org/10.1007/s11266-012-9310-0
Oliver K, Kothari A, Mays N. The dark side of coproduction: do the costs outweigh the benefits for health research? Health Res Policy Syst 2019;17:33. https://doi.org/10.1186/s12961-019-0432-3
Dodge J. Addressing democratic and citizenship deficits: lessons from civil society? Public Adm Rev 2013;73:203–6. https://doi.org/10.1111/puar.12009
Williams O, Sarre S, Papoulias SC, Knowles S, Robert G, Beresford P, et al. Lost in the shadows: reflections on the dark side of co-production. Health Res Policy Syst 2020;18:43. https://doi.org/10.1186/s12961-020-00558-0
Leach WD. Collaborative public management and democracy: evidence from western watershed partnerships. Public Adm Rev 2006;66:100–10. https://doi.org/10.1111/j.1540-6210.2006.00670.x
Donetto S, Pierri P, Tsianakas V, Robert G. Experience-based co-design and healthcare improvement: realizing participatory design in the public sector. Des J 2015;18:227–48. https://doi.org/10.2752/175630615X14212498964312
Bradwell P, Marr S. Making the Most of Collaboration. An International Survey of Public Service Co-Design. London: Demos; 2008. URL: www.demos.co.uk/files/CollabWeb.pdf (accessed 26 January 2023).
Verhaeghe P. What About Me?: The Struggle for Identity in a Market-based Society. London: Scribe Publications; 2014.
Cacioppo JT, Cacioppo S. The growing problem of loneliness. Lancet 2018;391:426. https://doi.org/10.1016/S0140-6736(18)30142-9
Vincent D. A History of Solitude. Oxford: John Wiley & Sons; 2020.
Local Government Association. Combating Loneliness. A Guide for Local Authorities. 2016. URL: www.local.gov.uk/sites/default/files/documents/combating-loneliness-guid-24e_march_2018.pdf (accessed 1 January 2023).
Local Government Association. Loneliness. How Do You Know Your Council Is Actively Tackling Loneliness? 2018. URL: https://local.gov.uk/sites/default/documents/22.28%20-%20Loneliness%20Must%20Know_02.pdf (accessed 3 February 2023).
Fried L, Prohaska T, Burholt V, Burns A, Golden J, Hawkley L, et al. A unified approach to loneliness. Lancet 2020;395:114. https://doi.org/10.1016/S0140-6736(19)32533-4
Mansfield L, Victor C, Meads C, Daykin N, Tomlinson A, Lane J, et al. A conceptual review of loneliness in adults: qualitative evidence synthesis. Int J Environ Res Public Health 2021;18:11522. https://doi.org/10.3390/ijerph182111522
Moustakas CE. Loneliness. Maryland, USA: Pickle Partners Publishing; 2016.
Bolmsjö I, Tengland PA, Rämgård M. Existential loneliness: an attempt at an analysis of the concept and the phenomenon. Nurs Ethics 2019;26:1310–25. https://doi.org/10.1177/0969733017748480
Mikulincer M, Shaver PR. An Attachment Perspective on Loneliness. In Coplan RJ, Bowker JC, editors. The Handbook of Solitude: Psychological Perspectives on Social Isolation, Social Withdrawal, and Being Alone. Oxford: Wiley-Blackwell; 2013. pp. 34–50. https://doi.org/10.1002/9781118427378.ch3
Perlman D, Peplau LA. Theoretical Approaches to Loneliness. In Peplau LA, Perlman D, editors. Loneliness: A Sourcebook of Current Theory, Research and Therapy. New Jersey, USA: Wiley; 1982. pp. 123–34.
Young JE. Loneliness, Depression and Cognitive Therapy: Theory and Application. In Peplau LA, Perlman D, editors. Loneliness: A Sourcebook of Current Theory, Research and Therapy. New Jersey, USA: Wiley; 1982. pp. 379–406.
Victor C, Mansfield L, Kay T, Daykin N, Lane J, Duffy LG, et al. An Overview of Reviews: The Effectiveness of Interventions to Address Loneliness at All Stages of the Life-Course. 2018. URL: https://whatworkswellbeing.org/wp/wp-content/uploads/woocommerce_uploads/2018/10/Full-report-Tackling-loneliness-Oct-2018.pdf (accessed 26 February 2023).
Campaign to End Loneliness. Promising Approaches Revisited: Effective Action on Loneliness in Later Life. 2021. URL: www.campaigntoendloneliness.org/wp-content/uploads/Promising_Approaches_Revisited_FULL_REPORT.pdf (accessed 1 February 2023).
Barreto M, Victor C, Hammond C, Eccles A, Richins MT, Qualter P. Loneliness around the world: age, gender, and cultural differences in loneliness. Pers Individ Dif 2021;169:110066. https://doi.org/10.1016/j.paid.2020.110066
Malli MA, Ryan S, Maddison J, Kharicha K. Experiences and meaning of loneliness beyond age and group identity. Sociol Health Illn 2023;45:70–89. https://doi.org/10.1111/1467-9566.13539
Wong A, Chau AKC, Fang Y, Woo J. Illuminating the psychological experience of elderly loneliness from a societal perspective: a qualitative study of alienation between older people and society. Int J Environ Res Public Health 2017;14:824. https://doi.org/10.3390/ijerph14070824
Tanskanen J, Anttila T. A prospective study of social isolation, loneliness, and mortality in Finland. Am J Public Health 2016;106:2042–8. https://doi.org/10.2105/AJPH.2016.303431
Galanaki EP, Mylonas K, Vogiatzoglou PS. Evaluating voluntary aloneness in childhood: initial validation of the Children’s Solitude Scale. Eur J Dev Psychol 2015;12:688–700. https://doi.org/10.1080/17405629.2015.1071253
Victor CR, Rippon I, Barreto M, Hammond C, Qualter P. Older adults’ experiences of loneliness over the lifecourse: an exploratory study using the BBC loneliness experiment. Arch Gerontol Geriatr 2022;102:104740. https://doi.org/10.1016/j.archger.2022.104740
Karhe L, Kaunonen M. Patient experiences of loneliness: an evolutionary concept analysis. ANS Adv Nurs Sci 2015;38:E21–34. https://doi.org/10.1097/ANS.0000000000000096
Lindgren BM, Sundbaum J, Eriksson M, Graneheim UH. Looking at the world through a frosted window: experiences of loneliness among persons with mental ill‐health. J Psychiatr Ment Health Nurs 2014;21:114–20. https://doi.org/10.1111/jpm.12053
Gardiner C, Geldenhuys G, Gott M. Interventions to reduce social isolation and loneliness among older people: an integrative review. Health Soc Care Community 2018;26:147–57. https://doi.org/10.1111/hsc.12367
Foot J, Hopkins T. A Glass Half-full: How an Asset Approach Can Improve Community Health and Well-being. Improvement and Development Agency (IDeA); 2010. URL: www.local.gov.uk/sites/default/files/documents/glass-half-full-how-asset-3db.pdf (accessed 26 January 2023).
Galvez-Hernandez P, González-de Paz L, Muntaner C. Primary care-based interventions addressing social isolation and loneliness in older people: a scoping review. BMJ Open 2022;12:e057729. https://doi.org/10.1136/bmjopen-2021-057729
Noone C, Yang K. Community-based responses to loneliness in older people: a systematic review of qualitative studies. Health Soc Care Community 2022;30:e859–73. https://doi.org/10.1111/hsc.13682
Gorenko JA, Moran C, Flynn M, Dobson K, Konnert C. Social isolation and psychological distress among older adults related to COVID-19: a narrative review of remotely-delivered interventions and recommendations. J Appl Gerontol 2021;40:3–13. https://doi.org/10.1177/0733464820958550
Fakoya OA, McCorry NK, Donnelly M. Loneliness and social isolation interventions for older adults: a scoping review of reviews. BMC Public Health 2020;20:129. https://doi.org/10.1186/s12889-020-8251-6
Lee C, Kuhn I, McGrath M, Remes O, Cowan A, Duncan F, et al.; NIHR SPHR Public Mental Health Programme. A systematic scoping review of community-based interventions for the prevention of mental ill-health and the promotion of mental health in older adults in the UK. Health Soc Care Community 2022;30:27–57. https://doi.org/10.1111/hsc.13413
Williams T, Lakhani A, Spelten E. Interventions to reduce loneliness and social isolation in rural settings: a mixed-methods review. J Rural Stud 2022;90:76–92. https://doi.org/10.1016/j.jrurstud.2022.02.001
Rodrigues NG, Han CQY, Su Y, Klainin-Yobas P, Wu XV. Psychological impacts and online interventions of social isolation amongst older adults during COVID-19 pandemic: a scoping review. J Adv Nurs 2022;78:609–44. https://doi.org/10.1111/jan.15063
Williams CYK, Townson AT, Kapur M, Ferreira AF, Nunn R, Galante J, et al. Interventions to reduce social isolation and loneliness during COVID-19 physical distancing measures: a rapid systematic review. PLOS ONE 2021;16:e0247139. https://doi.org/10.1371/journal.pone.0247139
Bourne P, Camic PM, Crutch SJ. Psychosocial outcomes of dyadic arts interventions for people with a dementia and their informal caregivers: a systematic review. Health Soc Care Community 2021;29:1632–49. https://doi.org/10.1111/hsc.13267
Luchetti M, Lee JH, Aschwanden D, Sesker A, Strickhouser JE, Terracciano A, Sutin AR. The trajectory of loneliness in response to COVID-19. Am Psychol 2020;75:897–908. https://doi.org/10.1037/amp0000690
Killgore WDS, Cloonan SA, Taylor EC, Miller MA, Dailey NS. Three months of loneliness during the COVID-19 lockdown. Psychiatry Res 2020;293:113392. https://doi.org/10.1016/j.psychres.2020.113392
Palgi Y, Shrira A, Ring L, Bodner E, Avidor S, Bergman Y, et al. The loneliness pandemic: loneliness and other concomitants of depression, anxiety and their comorbidity during the COVID-19 outbreak. J Affect Disord 2020;275:109–11. https://doi.org/10.1016/j.jad.2020.06.036
Campaign to End Loneliness. Loneliness Beyond COVID-19. Learning the Lessons of the Pandemic for a Less Lonely Future. 2021. URL: www.campaigntoendloneliness.org/wp-content/uploads/Loneliness-beyond-Covid-19-July-2021.pdf (accessed 6 February 2023).
Dahlberg L. Loneliness during the COVID-19 pandemic. Aging Ment Health 2021;25:1161–4. https://doi.org/10.1080/13607863.2021.1875195
Saltzman LY, Hansel TC, Bordnick PS. Loneliness, isolation, and social support factors in post-COVID-19 mental health. Psychol Trauma 2020;12:S55–7. https://doi.org/10.1037/tra0000703
Groarke JM, Berry E, Graham-Wisener L, McKenna-Plumley PE, McGlinchey E, Armour C. Loneliness in the UK during the COVID-19 pandemic: cross-sectional results from the COVID-19 psychological wellbeing study. PLOS ONE 2020;15:e0239698. https://doi.org/10.1371/journal.pone.0239698
Bu F, Steptoe A, Fancourt D. Who is lonely in lockdown? Cross-cohort analyses of predictors of loneliness before and during the COVID-19 pandemic. Public Health 2020;186:31–4. https://doi.org/10.1016/j.puhe.2020.06.036
Loades ME, Chatburn E, Higson-Sweeney N, Reynolds S, Shafran R, Brigden A, et al. Rapid systematic review: the impact of social isolation and loneliness on the mental health of children and adolescents in the context of COVID-19. J Am Acad Child Adolesc Psychiatry 2020;59:1218–39.e3. https://doi.org/10.1016/j.jaac.2020.05.009
Wickens CM, McDonald AJ, Elton-Marshall T, Wells S, Nigatu YT, Jankowicz D, Hamilton HA. Loneliness in the COVID-19 pandemic: associations with age, gender and their interaction. J Psychiatr Res 2021;136:103–8. https://doi.org/10.1016/j.jpsychires.2021.01.047
Mortimer J. No One Should Have No One. Working to End Loneliness Among Older People. Age UK. 2016. URL: www.ageuk.org.uk/globalassets/age-uk/documents/reports-and-publications/reports-and-briefings/health--wellbeing/rb_dec16_no_one_should_have_no_one.pdf (accessed 23 March 2021).
Herxheimer A, Ziebland S. The DIPEx Project: Collecting Personal Experiences of Illness and Health Care. In Hurwitz B, Greenhalgh T, Skultans V, editors. Narrative Research in Health and Illness. Massachusetts, Oxford, Victoria: Blackwell Publishing; 2004. pp. 115–31.
Ziebland S, Locock L, Fitzpatrick R, Stokes T, Robert G, O’Flynn N, et al. Informing the development of NICE (National Institute for Health and Care Excellence) quality standards through secondary analysis of qualitative narrative interviews on patients’ experiences. Health Serv Deliv Res 2014;2. https://doi.org/10.3310/hsdr02450
Anderson C, Kirkpatrick S. Narrative interviewing. Int J Clin Pharm 2016;38:631–4. https://doi.org/10.1007/s11096-015-0222-0
Kidd J, Ziebland S. Narratives of experience of mental health and illness on healthtalk.org. BJPsych Bull 2016;40:273–6. https://doi.org/10.1192/pb.bp.115.052217
Hinton L, Locock L, Ziebland S. Understanding and Using Health Experiences to Improve Healthcare: Examples from the United Kingdom. In Lucius-Hoene G, Holmberg C, Meyer T, editors. Illness Narratives in Practice: Potentials and Challenges of Using Narratives in Health-related Contexts. Oxford: Oxford University Press; 2018. pp. 263–71.
Bate P, Robert G. Experience-based design: from redesigning the system around the patient to co-designing services with the patient. Qual Saf Health Care 2006;15:307–10. https://doi.org/10.1136/qshc.2005.016527
Mattingly C, Garro LC. Narrative and the Cultural Construction of Illness and Healing. Oakland, CA: University of California Press; 2000.
Blumer H. Symbolic Interactionism: Perspective and Method. Oakland, CA: University of California Press; 1986.
Coyne IT. Sampling in qualitative research. Purposeful and theoretical sampling; merging or clear boundaries? J Adv Nurs 1997;26:623–30. https://doi.org/10.1046/j.1365-2648.1997.t01-25-00999.x
Parkinson S, Bromfield L. Recruiting young adults to child maltreatment research through Facebook: a feasibility study. Child Abuse Negl 2013;37:716–20. https://doi.org/10.1016/j.chiabu.2013.04.009
Brickman Bhutta C. Not by the book: Facebook as a sampling frame. Sociol Methods Res 2012;41:57–88. https://doi.org/10.1177/0049124112440795
Victor C, Scambler S, Bond J, Bowling A. Being alone in later life: loneliness, social isolation and living alone. Rev Clin Gerontol 2000;10:407–17. https://doi.org/10.1017/S0959259800104101
Hennink M, Kaiser BN. Sample sizes for saturation in qualitative research: a systematic review of empirical tests. Soc Sci Med 2022;292:114523. https://doi.org/10.1016/j.socscimed.2021.114523
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006;3:77–101. https://doi.org/10.1191/1478088706qp063oa
Stein JY, Solomon Z. The Lonely Side of War’s Aftermath: Traumatization and Isolation Among Veterans. In Sagan O, Miller ED, editors. Narratives of Loneliness. London: Routledge; 2017. pp. 35–47.
Killeen C. Loneliness: an epidemic in modern society. J Adv Nurs 1998;28:762–70. https://doi.org/10.1046/j.1365-2648.1998.00703.x
de Jong Gierveld J. A review of loneliness: concept and definitions, determinants and consequences. Rev Clin Gerontol 1998;8:73–80. https://doi.org/10.1017/S0959259898008090
Franklin A, Barbosa Neves B, Hookway N, Patulny R, Tranter B, Jaworski K. Towards an understanding of loneliness among Australian men: gender cultures, embodied expression and the social bases of belonging. J Sociol 2019;55:124–43. https://doi.org/10.1177/1440783318777309
Pinquart M, Sorensen S. Influences on loneliness in older adults: a meta-analysis. Basic Appl Soc Psych 2001;23:245–66. https://doi.org/10.1207/S15324834BASP2304_2
McGraw JG. Loneliness, its nature and forms: an existential perspective. Man World 1995;28:43–64. https://doi.org/10.1007/BF01278458
Cacioppo JT, Hawkley LC, Ernst JM, Burleson M, Berntson GG, Nouriani B, Spiegel D. Loneliness within a nomological net: an evolutionary perspective. J Res Pers 2006;40:1054–85. https://doi.org/10.1016/j.jrp.2005.11.007
Cacioppo JT, Patrick W. Loneliness: Human Nature and the Need for Social Connection. New York, USA: WW Norton & Company; 2008.
Public Health England. Making Every Contact Count (MECC): Consensus Statement. London: Public Health England; 2016. URL: www.england.nhs.uk/wp-content/uploads/2016/04/making-every-contact-count.pdf (accessed 26 January 2023).
Point of Care Foundation. EBCD: Experience-based Co-design Toolkit. URL: www.pointofcarefoundation.org.uk/resource/experience-based-co-design-ebcd-toolkit/ (accessed 26 January 2023).
Spencer L, Ritchie J, Ormston R, O’Connor W, Barnard M. Analysis: Principles and Processes. In Ritchie J, Lewis J, McNaughton Nicholls C, Ormston R, editors. Qualitative Research Practice. A Guide for Social Science Students and Researchers. 2nd edn. London: Sage; 2013. pp. 270–93.
LeonardCheshire. Driving Change: Improving the Accessibility of Taxis and Private Hire Vehicles for Disabled People. 2023. URL: www.leonardcheshire.org/sites/default/files/2023-01/Driving-Change.pdf (accessed 4 October 2022).
Tanay MAL, Armes J, Oakley C, Sage L, Tanner D, Roca J, et al. Co-designing a cancer care intervention: reflections of participants and a doctoral researcher on roles and contributions. Res Involv Engagem 2022;8:36. https://doi.org/10.1186/s40900-022-00373-7
Brandsen T, Honingh M. Definitions of Co-Production and Co-Creation. In Brandsen T, Verschuere B, Steen T, editors. Co-Production and Co-Creation. Engaging Citizens in Public Services. New York: Routledge; 2018. pp. 9–17.
Sharma S, Conduit J, Rao Hill S. Organisational capabilities for customer participation in health care service innovation. Australas Mark J 2014;22:179–88. https://doi.org/10.1016/j.ausmj.2014.08.002
Clarke D, Gombert-Waldron K, Honey S, Cloud G, Harris R, Macdonald A, et al. Co-designing organisational improvements and interventions to increase inpatient activity in four stroke units in England: a mixed-methods process evaluation using normalisation process theory. BMJ Open 2021;11:e042723. https://doi.org/10.1136/bmjopen-2020-042723
Baxter K. You’ve Got a Friend in Social Care Talk. 2022. URL: https://socialcare.blog.gov.uk/2022/01/17/youve-got-a-friend-in-social-care-talk/ (accessed 26 January 2023).

Auteurs

Sara Ryan (S)

Department of Social Care and Social Work, Manchester Metropolitan University, Manchester, UK.

Jane Maddison (J)

Social Policy Research Unit, University of York, York, UK.

Kate Baxter (K)

Social Policy Research Unit, University of York, York, UK.

Mark Wilberforce (M)

Social Policy Research Unit, University of York, York, UK.

Yvonne Birks (Y)

Social Policy Research Unit, University of York, York, UK.

Emmie Morrissey (E)

Department of Social Care and Social Work, Manchester Metropolitan University, Manchester, UK.

Angela Martin (A)

Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.

Ahmed Lambat (A)

Public Involvement, LMCP Care Link, Manchester, UK.

Pam Bebbington (P)

Public Involvement, My Life My Choice, Oxford, UK.

Sue Ziebland (S)

Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.

Louise Robson (L)

Doncaster Borough Council, Doncaster, UK.

Louise Locock (L)

Health Services Research Unit, University of Aberdeen, Aberdeen, UK.

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