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Carers research group

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Publications

Publications

Boyle G (2020) The moral resilience of young people who care. Ethics and Social Welfare, 14 (3), 266-281.

Boyle G (2017) Revealing gendered identity and agency in dementia. Health and Social Care in the Community, 25 (6), 1787-1793.

Boyle G (2014) ‘Can’t cook, won’t cook’: Men’s involvement in cooking when their wives develop dementia. Journal of Gender Studies, 23 (4), 336-350.

Boyle G (2014) Recognising the agency of people with dementia. Disability and Society, 29 (7), 1130-1144.

Boyle G (2013) Facilitating decision-making by people with dementia: is spousal support gendered? Journal of Social Welfare and Family Law, 35(2), 227-243.

Boyle G (2013) ‘She’s usually quicker than the calculator’: Financial management and decision-making in couples living with dementia. Health and Social Care in the Community, 21 (5), 554–562.

Boyle G (2011) Early implementation of the Mental Capacity Act 2005 in health and social care. Critical Social Policy, 31 (3), 365-387.

Boyle G, Constantinou G & Garcia R (2022) Does gender influence children’s and young people’s caring? A qualitative, systematic review and meta-ethnography, Children & Society

Boyle, G and Mozdiak, E (2023) Young adult carers services in England: facilitating choice over future caring?, Health and Social Care in the Community.

Boyle, G and Mozdiak, E (2022) Young adult carers – transitioning to adulthood or to adult caring?, Children & Society.

Boyle G, Warren, L (2015) Showing how they feel: the emotional reflexivity of people with dementia. Families, Relationships & Societies, 6 (1), 3-19.

Boyle G, Williams V, et al. (2014) Best Interests Decisions: professional practices in health and social care. Health and Social Care in the Community, 22 (1), 78-86.

Chevrier, B., Dorard, G., Jarrige,  E., Joseph, S., Becker, S., Leu, A., Untas, A. (2022). Assessing caring activities in French adolescents and young adults: Relevance of the Multidimension Assessment of Caring Activities for Young Carers (MACA-YC18). Child: Care, Health and Development, 1–12

Donald L, Horne J, Gracia R, Kentzer N, Pappas Y, Trott M, & Vseteckova J (2024) The perceived physical and psychological benefits of an online-based group dance intervention for unpaid adult carers: A UK based qualitative study", Plos Global Public Health.

Eltaybani S, Pappas Y,  Vseteckova J, Kentzer N & Horne J et al. (2024) Promoting workplace retention during global crises: An international survey of the preventive role of psychological support among victims of social discrimination in long-term care facilities, The Journal of Geriatric Nursing.

Frech, M., Wepf, H., Nagl-Cupal, M., Becker, S., Leu, A. (2021). Ready and able? Professional awareness and responses to young carers in Switzerland. Children and Youth Services Review, S. 106027.

Frech, M., Berger, F., Rabhi-Sidler, S., Nagl-Cupal, M., Becker, S., Leu, A. (2021) How professional support for young carers benefits from a salutogenic approach, 00(00): 1–20, International Journal of Care and Caring.

Garcia J, Mahon A, Boyle G, Jones K & Vseteckova J  (2021) Frailty and spousal/partner bereavement in older people: a scoping review, Journal of Health and Social Care Improvement, 4 (1), pp. 14-23.

Gould, S.J., Borgstrom, E., Garcia, R., Wee, B. & McCallum, K. (2024) British unpaid carers’ perspectives on what impacts their resilience when providing end-of-life care at home: a scoping review, International Journal of Care and Caring

Guggiari, E., Phelps, D. & Leu, A. (2022). Rekrutierung von «Adolescent Young Carers» in der Schweiz: Erfahrungen aus dem internationalen Horizon2020 ME-WE-Projekt. Krankenpflege – Soins infirmiers, 115(1), 36–37.

Horne, J; Donald, L; Gracia, R; Kentzer, N, Pappas, Y et al (2024), Supporting adult unpaid carers via an online dancing intervention: A feasibility/acceptability study. PLOS Global Public Health,

Horne J, Kentzer N, Trott M, Smith L & Vseteckova J (2025) A systematic review of international literature on the gender of unpaid carers attending group-based physical activity with people with dementia, International Journal of Care and Caring

Horne J, Kentzer N, Smith L, Trott M, Vseteckova J (2020) A systematic review on the prevalence of physical activity, and barriers and facilitators to physical activity, in informal carers in the UK. Journal of Physical Activity & Health, 18 (2), 212-218. 

Jones K, Birchley G, Huxtable R, Clare L, Walter J, and Dixon J (2019) End of life care: A scoping review of experiences of Advance Care Planning for people with dementia. Dementia: the international journal of social research and practice 18(3), 825–845.

Jones K, Garcia R, Boyle G, Vseteckova J (2021) A systematic review of the effectiveness of Acceptance and Commitment Therapy (ACT) for managing grief experienced by bereaved spouses or partners of adults who had received palliative care. Illness, Crisis & Loss.t

Jones, K., Methley, A., Garcia, B., Boyle, G., & Vseteckova, J. (2021) A systematic review of the effectiveness of Acceptance and Commitment Therapy (ACT) for managing grief experienced by bereaved spouses or partners of adults who had received palliative care, Illness, Crisis & Loss.

Jordan J, Larkin M, Tilley E, Vseteckova J, Ryan S, Wallace L (2024) Transitions-related support for ageing family carers of older people with intellectual disabilities and behaviours that challenge others: a systematic scoping review, Journal of Applied Research in Intellectual Disabilities (JARID).

Joseph, S., Sempik, J., Leu, A., & Becker, S. (2020). Young Carers Research, Practice and Policy: An Overview and Critical Perspective on Possible Future Directions. Adolescent Research Review 5(1), 77–89. 

Justin, P., Dorard, G., Vioulac, C., Leu, A., Untas, A. (2021). What do French school staff know about young carers? A qualitative study about their perceptions. Psychology in the Schools.

Kubiak C, Tomkins L and Larkin M (2019) Surveillance, Intervention and the Politics of Care. International Journal of Care and Caring, 3 (2), 165-81.

Larkin M (2015) Developing the knowledge base about carers and personalisation: the contributions made by an exploration of carers’ perspectives on personal budgets and the carer- service user relationship. Health and social care in the community, 23 (1), 33–41.

Larkin M and Milne A (2021) Knowledge generation and former carers: reflections and ways forward. Families, Relationships and Societies, 10 (2), 287-302. 

Larkin M, Henwood M, and Milne A (2020). Older Carers and Carers of People with Dementia: Improving and Developing Effective Support. Social Policy and Society, 1-15. 

Larkin M, Henwood M and Milne A (2019) Carer-related research and knowledge: findings from a scoping review. Health and Social Care in the Community, 27(1), 55-67.

Larkin, M. and Kubiak, C. (2021) ‘Carers and Higher Education: progressing the research agenda for participation and success’ Widening Participation and Lifelong Learning, 23, (2) 130-151.

Larkin M and Milne A (2020) The case for a carer-related knowledge exchange network: enhancing the relationship between research and evidence and policy and practice. Evidence and Policy, 16, (3), 491-502.

Larkin M and Milne A (2017) What do we know about older former carers? Key issues and themes. Health and Social Care in the Community, 25 (4), 1396 -1403.

Larkin M and Milne A (2015) Caring in the 21st century: research evidence and knowledge generation. Health and Social Care in the Community, 23 (1), 1-3.

Larkin M and Milne A (2014) Carer empowerment in the 21st century – a critical reflection. Journal of Social Policy and Society, 13 (1), 25-38.

Larkin M and Mitchell W (2016) Carers, Choice and Personalisation: What do we know? Social Policy and Society, 15 (2), 189-205.

Larkin M, Richardson E-L, and Tabreham J (2012) New partnerships in health and social care for an era of public spending cuts. Health and Social Care in the Community, 20 (2), 199-207.

Leu, A., Berger, F., Heino, M., Nap, H. H., Untas, A., Boccaletti, L., Feylyn, L., Phelps, D. & Becker, S. (2022). The 2021 cross-national and comparative classification of in-country awareness and policy responses to ‘young carers’. Journal of Youth Studies, 1–18.

Leu, A., Guggiari, E., Phelps, D., Magnusson, L., Nap, H. H., Hoefman, R., Lewis, F. ; Santini, S.; Socci, M.; Boccaletti, L.; Hlebec, V.; Rakar, T.; Hudobivnik, T.; Hanson, E. Cross-national analysis of legislation, policy and service frameworks for adolescent young carers in Europe (2021). Journal of Youth Studies.

Leu, A., Wepf, H., Sempik, J., Nagl-Cupal, M., Becker, S., Jung, C., & Frech, M. (2020). Caring in mind? Professionals' awareness of young carers and young adult carers in Switzerland. Health & Social Care in the Community 28(6), 2390–2398. 

Lewis, F., Becker, S., Parkhouse, T., Joseph, S., Hlebec, V., Mrzel, M., Brolin, R., Casu, G., Boccaletti, L., Santini, S., D’Amen, B., Socci, M., Hoefman, R., de Jong, N., Leu, A., Phelps, D., Guggiari, E., Magnusson, L. and Hanson, E. (2022) The first cross-national study of adolescent young carers aged 15–17 in six European countries: 1–29, International Journal of Care and Caring.

Lindsay, R; Vseteckova, J; Horne, J; Smith, L; Trott, M; de Lappe, J; Soysal, P; Pizzol, D. &  Kentzer, N. (2022) The prevalence of physical activity among informal carers: a systematic review of international literature, Sport Sciences for Health.

Lindsay, R; Vseteckova, J; Horne, J; Smith, L; Trott, M; de Lappe, J; Soysal, P; Pizzol, D. &  Kentzer, N. (2023). Barriers and facilitators to physical activity among informal carers: a systematic review of international literature, International Journal of Care and Caring:

Milne A and Larkin M (2015) Knowledge generation about care-giving in the UK: a critical review of research paradigms. Health and Social Care in the Community, 23 (1), 4–13.

Nap, H. H., Hoefman, R., Jong, N., Lovink, L., Glimmerveen, L., Lewis, F., Santini, S., D’Amen, B. Socci, M., Boccaletti, L., Casu, G., Manattini, A., Brolin, R., Sirk, K., Hlebec, V., Rakar, T., Hudobivnik, T.,Leu, A., Berger, F., Magnusson, L. & Hanson, E. (2020). The awareness, visibility and support for young carers across Europe: a Delphi study. BMC Health Service Research, 20(1), 921.

Qureshi I, Pappas Y, Jones K, Mills R, Napper T, Marriot P, & Vseteckova J (2024) Enabling better carer involvement; A qualitative evaluation of a community-based carers organisation’s involvement service in the United Kingdom, Journal of Infrastructure, Policy and Development.

Santini, S., Socci, M., D’Amen, B., Di Rosa, M., Casu, G., Hlebec, V., Lewis, F., Leu, A., Hoefman, R., Brolin, R., Magnusson, L. & Hanson, E. (2020). Positive and Negative Impacts of Caring among Adolescents Caring for Grandparents. Results from an Online Survey in Six European Countries and Implications for Future Research, Policy and Practice. International Journal of Environmental Research and Public Health, 17(18), 6593.

Tilley, E., Jordan, J., Larkin, M., Vseteckova, J., Ryan S., Wallace L. (2023) ‘Transitions for older people with intellectual disabilities and behaviours that challenge others: a rapid scoping review’. Journal of Applied Research in Intellectual Disabilities (JARID), (36), 207–229 (30% contribution).

Tong K, Attenborough K, Sharp D, Taherzadeh S, Deepak-Gopinath M & Vseteckova J (2024) Acceptability and simultaneous use of sounds and vibrations in remote monitoring of assisted living/ smart homes in the UK-a systematic review, Applied Sciences Journal

Vseteckova J, Dadova K, Gracia R, Ryan G, Borgstrom E, Abington J, Deepak-Gopinath M, Pappas Y (2020) Barriers and facilitators to adherence to walking group exercise in older people living with dementia in the community and their carers: a systematic review. European Review of Aging and Physical Activity. 17, 15. 

Wepf, H., Joseph, S., Leu, A. (2021). Benefit Finding Moderates the Relationship Between Young Carer Experiences and Mental Well-Being. Psychology & Health.

Yeandle S, Chou Y-C, Fine M, Larkin M and Milne A (2017) Care and Caring: Interdisciplinary perspectives on a societal issue of global significance. International Journal of Care and Caring, 1 (1), 3-25.

Boyle G, Williams V et al. (2012) Making best interests decisions – are professionals getting it right? Journal of Dementia Care, Nov/Dec, 19-21.

Mahon A, Vseteckova J, Tilley L (2020) When family members grow older. Community Living, 34 (1)

Williamson T, Boyle G et al. (2012) Listening to the lady in the bed: The Mental Capacity Act 2005 in practice for older people. Elder Law Journal, 2 (2), 127-134.

Jones, K and Horne, J (eds) (2024) Understanding the Grief and Loss Experiences of Carers: Research, Practitioner and Personal Perspectives. London: Routledge 

Larkin, M. (2013). Health and Well-being Across the Life Course. Sage Publications

Larkin, M. (2011). Social Aspects of Health, Illness and healthcare. McGraw- Hill

Larkin, M. (2009). Vulnerable Groups in Health and Social Care. Sage Publications

Milne, A. and Larkin, M. (2023) Family Carers and Caring: What it’s all about. London: Emerald Publishing Society now series

Boyle G (2019) Beyond lipstick and woodwork. Why gender matters when living with dementia In: Pickard S and Robinson J (Eds) Ageing, the Body and the Gender Regime: Health, illness and disease across the life course. Abingdon: Routledge.

Crafter, S. & Rosen, R. (2021). Care in a refugee camp: A case study of a humanitarian volunteer in Calais. In E. Fiddian-Qasmiyeh (ed.) Hospitality and Hostility in a Moving World. UCL Open Press.

Larkin M (2019) Former carers in Gu D and Dupre ME (Eds) Encyclopedia of Gerontology and Population Aging. Springer

Larkin M (2012) Care of Vulnerable Adults in Blaber A (Ed). Foundations for paramedic practice. A theoretical perspective. McGraw-Hill (2nd ed.)

Larkin M (2011) Disability and illness: the perspective of people living with a long-term condition in Lloyd CE and Heller TD (Eds). Long Term Conditions: Challenges in Health and Social Care practice. Sage Publications

Larkin M (2011) What about the carers? in Lloyd CE and Heller TD (Eds) Long Term Conditions: Challenges in Health and Social Care practice. Sage Publications

Larkin M (2011) Working with vulnerable people: experiences of disability in Lloyd CE and Heller TD (Eds) Long Term Conditions: Challenges in Health and Social Care Practice. Sage Publications

Messenger. J, (2024) Impact on identity for those working as healthcare professionals when taking on the role of carer in Jones. K. & Horne. J. (eds) (2024) Understanding the Grief and Loss Experiences of Carers: Research, Practitioner and Personal Perspectives. London: Routledge 

Oldridge L, Larkin M (2020) Unpaid Care: Global Growth and Policies for Sustainability’ in Filho HC, Özuyar PG, Azul AM, Brandli L and Wall T (Eds) Encyclopedia of the UN Sustainable Development Goals. Gender Equality

Pestano, C. (2021). Caring for the Carers. In K. S. Hendricks & J. Boyce-Tillman (Eds.), Music and Spirituality Series: Vol. 7. Living Song: Singing, Spirituality, and Wellbeing. Oxford, England: Peter Lang

Vseteckova J. and Holman C. (2024) Nursing care for older people, in Peate I (Ed), Alexander's Nursing Practice, 6th Ed. London: ELSEVIER

Wainwright J., Vseteckova J. and Rossade K.D. (2024) The rewards for older adults using technology to learn languages, in Wyse D, Baumfield V, Mockler N & Reardon M (Eds), BERA-SAGE Handbook of Research-Informed Education Practice and Policy. London: Sage.

Borgstrom, E, Jordan, J. & Henry, C. (2024) Speaking to me made them feel that they had someone: Evaluation of Rainbow Trust’s out-of-area, online support service. Open University Research Report. 

Boyle G (2021), Who are young carers and what do they do? 

Boyle G (2019), What are the connections between music and memory?

Boyle G (2018), People with dementia, meaning and music

Boyle G (2018), Music, culture and dementia

Boyle G (2013) Written evidence to the House of Lords Mental Capacity Act 2005 Select Committee, Evidence Volume 1, 20th December

Boyle, G. & Mozdiak, L. (2022) Young adult carers services in England: A qualitative study. Summary report. Open University Research Report.

France R, Vseteckova J, Lapwood S, Roberts N, Jones N and Flemming K (2020) How can patients with COVID-19 and their family or unpaid carers be enabled and supported to manage palliative care treatment safely and effectively at home? CEBM The Centre for Evidence-Based Medicine & Evidence Service to support the COVID-19 response How can patients with COVID-19 and their family or unpaid carers be enabled and supported to manage palliative care treatment safely and effectively at home? - The Centre for Evidence-Based Medicine (cebm.net)

Henwood M, Larkin M and Milne A (2018) Exemplar models and support for older carers and carers of people with dementia: informing commissioning. NHS England

Henwood M, Larkin M and Milne A (2018) Supporting Carers. LSE British Politics and Policy.

Henwood M, Larkin M and Milne A (2017) Seeing the wood for the trees. Carer related research and knowledge: A scoping review. https://www.scie-socialcareonline.org.uk/seeing-the-wood-for-the-trees-carer-related-research-and-knowledge-a-scoping-review/r/a110f00000RCtCnAAL

Horne J, Kentzer N, Trott M, Smith L, Vseteckova J (2020) A systematic review on the prevalence of physical activity in informal/unpaid carers in the UK. PROSPERO - International Prospective register of Systematic Reviews 2020 CRD42020162032.

Horne J, Vseteckova J, Kentzer N, Trott M, Smith L (2020) A systematic review on the barriers and facilitators to physical activity in informal/unpaid carers in the UK. PROSPERO International Prospective register of Systematic Reviews 2020 CRD42020167742

Jones K, Methley A and Vseteckova J (2020) Protocol: A systematic review on use of green spaces in supporting recovery from trauma in older people living in community in the UKCRD42020183058 

Jones K, Methley A, Boyle G, Garcia R, Vseteckova J (2020) A systematic review of the effectiveness of Acceptance and Commitment Therapy (ACT) compared with other psychological therapies in managing grief experienced by bereaved spouses or partners of adults who had received palliative care in the UK. CRD42020191393

Larkin M (2019) Care and caring network. OU Wellbeing+ video

Larkin M Why carers are disadvantaged even when their responsibilities end. The Conversation 19th October 2015

Larkin M (2013) Personal budgets and the carer- service user relationship. Nottingham: Carers Federation

Larkin M (2012) The Economic and Social Research Council: Carer Seminar Series. National Family Carer Network Bulletin, 8th November p4

Larkin M and Dickinson H (2011) Personalisation: what will the impacts be for carers? Third Sector Research Centre Working Paper 64

Larkin, M.; Gopinath, M. Kartupelis, J. and Wilson, A. (2023). Making every relationship matter: a practitioner toolkit for relational care with older people. The Open University. 

Larkin M and Hudson G (2018) Care and caring network@OU news bulletin 2018. Inside Track.

Larkin M, Kubiak C, Deepak-Gopinath M, Vseteckova J and Messenger J (2020). Caring about student carers.

Larkin M and Kubiak C (2020) Learning and caring for others. Fresher's broadcast.

Larkin M and McGrath L (2019) Care and caring network@OU news bulletin 2019. Inside Track.

Larkin M, Milne A, Henwood M, Croisdale-Appleby D. and Clark M (2017) Including family carers adding value and impact to research. NIHR School for Social Care Research

Larkin M and Milne A (2012) Demand for informal care is rising but supply is set to fall - we must solve this conundrum. Community Care, November 8th, 2012

Lindsay R, Vseteckova J, Horne J, Smith L, Trott M, De Lappe J; Soysal P; Pizzol D; Kentzer N (2022) The prevalence of physical activity among informal carers: a systematic review of international literature.  Sports Science for Health pp.1-48 The prevalence of physical activity among informal carers: a systematic review of international literature | SpringerLink

Miller R and Larkin M (2013) How can the third sector help improve support for carers? Guardian Professional, 31st July 2013

Miller R and Larkin M (2013) Personalisation: the beginning of a new dawn or the end of the road for third sector support for carers? Third Sector Research Centre Working Paper 104

Pacini A, Vseteckova J, Pappas Y (2020) Psychological therapy for older adults in the time of COVID-19: Older adults’ perceptions on the acceptability of online versus face to face versions of a mindfulness for later life group. (IPG-08-20-457) (in print BJSTR BJSTR-A-20-RA-555 )

Simpson A, Coffey M, Hannigan B, Faulkner A, Jones A, Barlow S, Vseteckova J, Haddad M, Marlowe K, (2017) Cross-national mixed methods comparative case study of recovery-focused mental health care planning and coordination in acute inpatient mental health settings (COCAPP-A). Health Serv Deliv Res; 5(26)

Taverner P, Larkin M, Vseteckova J, Kentzer N, Kentzer J, Penson M, Robb M, Berry A, Spencer M, and Methley A. (2020). How can Adult Carers get the best support during Covid-19 pandemic and beyond? 

Vseteckova, J., Eccles, S., O’Connor, G., Cook, Tomlin, A., E.J., Fearn, L., Herodotou, C., Millar, R. & Anthoney, D. (2024) Take Five to Age Well - Interim Short Report. Commissioned and funded by Connected NI & The Open University.

Vseteckova J, Garcia R (2019) The impact of dance and movement on learning, health, wellbeing and quality of life of institutionalised older adults living with or without dementia: a systematic review protocol. PROSPERO 2019 CRD42019127954 

Vseteckova J, Kentzer N, Horne J, Penson M, Robb M, Larkin M, Berry A, Spencer, M, Methley A and Taverner P. (2020). Young carers, COVID-19 and physical activity. 

Vseteckova J, Kentzer N, Horne J, Penson M, Robb M, Larkin M, Berry A, Spencer M, Methley A and Taverner P (2020). The effects of self-isolation and lack of physical activity on carers.

Williams V, Williamson T, Boyle G, et al. (2013) Written evidence to the House of Lords Mental Capacity Act 2005 Select Committee, Evidence Volume 2, 20th December