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Original Articles

Culture, consent, costs and care homes: Enabling older people with dementia to participate in research

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Pages 475-481 | Received 25 Jun 2010, Accepted 02 Nov 2010, Published online: 14 Apr 2011

Keep up to date with the latest research on this topic with citation updates for this article.

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Keith Francis & Susan Murtha. (2023) The inclusion and efficacy of first-person narrative in the design of long-term care homes. Architectural Science Review 66:5, pages 360-371.
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Vicki Welch, Fiona Turner-Halliday, Nicholas Watson, Philip Wilson, Bridie Fitzpatrick, Richard Cotmore & Helen Minnis. (2017) Randomisation before consent: avoiding delay to time-critical intervention and ensuring informed consent. International Journal of Social Research Methodology 20:4, pages 357-371.
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Articles from other publishers (49)

Maggie MacNeil, Julia Abelson, Caroline Moore, Shazelle Lindsay, Janet Adams, Aref Alshaikhahmed, Kamal Jain, Penelope Petrie & Rebecca Ganann. (2023) Evaluating the impact of engaging older adults and service providers as research partners in the co-design of a community mobility-promoting program: a mixed methods developmental evaluation study. Research Involvement and Engagement 9:1.
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Brittany Nocivelli, Victoria Shepherd, Kerenza Hood, Carolyn Wallace & Fiona Wood. (2023) Identifying barriers and facilitators to the inclusion of older adults living in UK care homes in research: a scoping review. BMC Geriatrics 23:1.
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Aisha Macgregor, Brendan McCormack, Karen Spilsbury, Jo Hockley, Alasdair Rutherford, Margaret Ogden, Irene Soulsby, Maisie McKenzie, Barbara Hanratty & Liz Forbat. (2023) Supporting care home residents in the last year of life through ‘Needs Rounds’: Development of a pre-implementation programme theory through a rapid collaborative online approach. Frontiers in Health Services 2.
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Madison Stephens & Alec Knight. (2022) ‘Things Won’t Improve if they’re Just Left to Fester’: A Qualitative Study Exploring How UK Care home Staff Perceive and Experience Engagement in Health Research. Journal of Long-Term Care 0:2022, pages 268.
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Madison Stephens & Anna Mankee-Williams. (2022) Research engagement among UK care home staff: a reflection. International Journal of Care and Caring 6:4, pages 644-649.
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Kate de Medeiros, Laura M. Girling & Nancy Berlinger. (2022) Inclusion of people living with Alzheimer’s disease or related dementias who lack a study partner in social research: Ethical considerations from a qualitative evidence synthesis. Dementia 21:4, pages 1200-1218.
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Jennifer Kirsty Burton, Arne Timon Wolters, Ann-Marie Towers, Liz Jones, Julienne Meyer, Adam Lee Gordon, Lisa Irvine, Barbara Hanratty, Karen Spilsbury, Guy Peryer, Stacey Rand, Anne Killett, Gizdem Akdur, Stephen Allan, Priti Biswas & Claire Goodman. (2022) Developing a minimum data set for older adult care homes in the UK: exploring the concept and defining early core principles. The Lancet Healthy Longevity 3:3, pages e186-e193.
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Emma Law & Rosalie Ashworth. (2022) Facilitators and Barriers to Research Participation in Care Homes: Thematic Analysis of Interviews with Researchers, Staff, Residents and Residents’ Families. Journal of Long-Term Care 0:2022, pages 49.
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Lisa Irvine, Jennifer Kirsty Burton, Myzoon Ali, Terence J. Quinn & Claire Goodman. (2021) Protocol for the development of a repository of individual participant data from randomised controlled trials conducted in adult care homes (the Virtual International Care Homes Trials Archive (VICHTA)). Trials 22:1.
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Anne Forster, Jennifer Airlie, Alison Ellwood, Mary Godfrey, John Green, Bonnie Cundill, Bryony Dawkins, Nicola McMaster, Claire Hulme, Robert Cicero, Vicki McLellan, Liz Graham, Bev Gallagher, David R Ellard, Joan Firth & Amanda Farrin. (2021) An intervention to increase physical activity in care home residents: results of a cluster-randomised, controlled feasibility trial (the REACH trial). Age and Ageing 50:6, pages 2063-2078.
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Jennifer K Burton, Martin Reid, Ciara Gribben, David Caldwell, David N Clark, Peter Hanlon, Terence J Quinn, Colin Fischbacher, Peter Knight, Bruce Guthrie & David A McAllister. (2021) Impact of COVID-19 on care-home mortality and life expectancy in Scotland. Age and Ageing.
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Devon Perfect, Alys W Griffiths, Miguel Vasconcelos Da Silva, Natashe Lemos Dekker, Joanne McDermid & Claire A Surr. (2019) Collecting self-report research data with people with dementia within care home clinical trials: Benefits, challenges and best practice. Dementia 20:1, pages 148-160.
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C. J. Evans, E. Yorganci, P. Lewis, J. Koffman, K. Stone, I. Tunnard, B. Wee, W. Bernal, M. Hotopf, I. J. Higginson, Deborah Tanner, Claire Henry, Gunn Grande, Steve Dewar, Gareth Owen, Rachel Burman, Dimitrios Adamis, Michael Dunn, Scott Kim, Simon Woods & Rowena Vohora. (2020) Processes of consent in research for adults with impaired mental capacity nearing the end of life: systematic review and transparent expert consultation (MORECare_Capacity statement). BMC Medicine 18:1.
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Gill Toms, Stephanie Green, Alison Orrell & Fiona Verity. (2020) Building relational research capacity in care homes in the COVID-19 era: applying recognition theory to the research agenda. Quality in Ageing and Older Adults 21:4, pages 229-239.
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Liz Graham, Alison Ellwood, Karen Hull, Jill Fisher, Bonnie Cundill, Michael Holland, Madeline Goodwin, David Clarke, Rebecca Hawkins, Claire Hulme, Ismail Patel, Charlotte Kelly, Rachel Williams, Amanda Farrin & Anne Forster. (2020) A posture and mobility training package for care home staff: results of a cluster randomised controlled feasibility trial (the PATCH trial). Age and Ageing 49:5, pages 821-828.
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Michele D. Shropshire, Stephen J. Stapleton & Mary J. Dyck. (2020) Barriers and Insights in Participant Recruitment in Assisted Living Facilities. Nursing Science Quarterly 33:2, pages 116-121.
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Nola M. Ries, Elise Mansfield & Rob Sanson-Fisher. (2020) Ethical and legal aspects of research involving older people with cognitive impairment: A survey of dementia researchers in Australia. International Journal of Law and Psychiatry 68, pages 101534.
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Hazel Morbey, Andrew J. E. Harding, Caroline Swarbrick, Faraz Ahmed, Ruth Elvish, John Keady, Paula R. Williamson & Siobhan T. Reilly. (2019) Involving people living with dementia in research: an accessible modified Delphi survey for core outcome set development. Trials 20:1.
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Laura Edwards, Benjamin Ellis, Clare Donnellan, Hanan Osman, Naseer Haboubi, Michael Jones, Wayne Sunman, Lorraine Pinnington & Margaret Frances Phillips. (2019) Prevalence of unmet needs for spasticity management in care home residents in the East Midlands, United Kingdom: a cross-sectional observational study. Clinical Rehabilitation 33:11, pages 1819-1830.
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Nick Smith, Ann-Marie Towers, Grace Collins, Sinead Palmer, Stephen Allan & Jennifer Beecham. (2019) Encouraging managers of care homes for older adults to participate in research. Quality in Ageing and Older Adults 20:3, pages 120-129.
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Alexandra Johnstone & Alison Donaldson. (2018) Care Home Research: Future Challenges and Opportunities. Geriatrics 4:1, pages 2.
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Alison Ellwood, Jennifer Airlie, Robert Cicero, Bonnie Cundill, David R Ellard, Amanda Farrin, Mary Godfrey, Liz Graham, John Green, Vicki McLellan, Najma Siddiqi & Anne Forster. (2018) Recruiting care homes to a randomised controlled trial. Trials 19:1.
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Helen R Lam, Selina Chow, Kate Taylor, Ronald Chow, Henry Lam, Katija Bonin, Leigha Rowbottom & Nathan Herrmann. (2018) Challenges of conducting research in long-term care facilities: a systematic review. BMC Geriatrics 18:1.
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J C Horne, K Robinson, E Sims, S Stirling, T Sach, S Armstrong & P A Logan. (2018) 24IMPROVING TRIAL RECRUITMENT IN CARE HOMES: THE FALLS IN CARE HOME (FINCH) EXPERIENCE. Age and Ageing 47:suppl_3, pages iii9-iii12.
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Clare Ellis-Smith, Irene J. Higginson, Barbara A. Daveson, Lesley A. Henson & Catherine J. Evans. (2018) How can a measure improve assessment and management of symptoms and concerns for people with dementia in care homes? A mixed-methods feasibility and process evaluation of IPOS-Dem. PLOS ONE 13:7, pages e0200240.
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Julie Whitney, Stephen H.D. Jackson & Finbarr C. Martin. (2017) Feasibility and efficacy of a multi-factorial intervention to prevent falls in older adults with cognitive impairment living in residential care (ProF-Cog). A feasibility and pilot cluster randomised controlled trial. BMC Geriatrics 17:1.
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Clare Ellis-Smith, Catherine J Evans, Fliss EM Murtagh, Lesley A Henson, Alice M Firth, Irene J Higginson & Barbara A Daveson. (2016) Development of a caregiver-reported measure to support systematic assessment of people with dementia in long-term care: The Integrated Palliative care Outcome Scale for Dementia. Palliative Medicine 31:7, pages 651-660.
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Azucena Guzmán, Jennifer Wenborn, Ritchard Ledgerd & Martin Orrell. (2017) Evaluation of a Staff Training Programme using Positive Psychology coaching with film and theatre elements in care homes: views and attitudes of residents, staff and relatives. International Journal of Older People Nursing 12:1, pages e12126.
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Kaye Ervin, Irene Blackberry & Helen Haines. (2017) Shared Decision Making in Residential Aged Care: A Framework Synthesis. Open Journal of Nursing 07:07, pages 814-837.
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Dalal Alsaeed, Elizabeth Jamieson, Mine Orlu Gul & Felicity J. Smith. (2016) Challenges to optimal medicines use in people living with dementia and their caregivers: A literature review. International Journal of Pharmaceutics 512:2, pages 396-404.
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. (2016) Evaluation of an Organisational Intervention to Promote Integrated Working between Health Services and Care Homes in the Delivery of End-of-Life Care for People with Dementia: Understanding the Change Process Using a Social Identity Approach. International Journal of Integrated Care 16:2.
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Claire Goodman, Katherine Froggatt, Sarah Amador, Elspeth Mathie & Andrea Mayrhofer. (2015) End of life care interventions for people with dementia in care homes: addressing uncertainty within a framework for service delivery and evaluation. BMC Palliative Care 14:1.
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David Gillespie, Kerenza Hood, Antony Bayer, Ben Carter, Donna Duncan, Aude Espinasse, Meirion Evans, Jacqueline Nuttall, Helen Stanton, Arun Acharjya, Stephen Allen, David Cohen, Sam Groves, Nick Francis, Robin Howe, Antony Johansen, Efi Mantzourani, Emma Thomas-Jones, Alun Toghill, Fiona Wood, Neil Wigglesworth, Mandy Wootton & Christopher C. Butler. (2015) Antibiotic prescribing and associated diarrhoea: a prospective cohort study of care home residents. Age and Ageing 44:5, pages 853-860.
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Steve Iliffe, Jane Wilcock, Vari Drennan, Claire Goodman, Mark Griffin, Martin Knapp, David Lowery, Jill Manthorpe, Greta Rait & James Warner. (2015) Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM). Programme Grants for Applied Research 3:3, pages 1-596.
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Heather E. Barry, Carole Parsons, A. Peter Passmore & Carmel M. Hughes. (2015) Pain in care home residents with dementia: an exploration of frequency, prescribing and relatives' perspectives. International Journal of Geriatric Psychiatry 30:1, pages 55-63.
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Sarah Amador, Claire Goodman, Derek King, Ina Machen, Natasha Elmore, Elspeth Mathie & Steve Iliffe. (2014) Emergency ambulance service involvement with residential care homes in the support of older people with dementia: an observational study. BMC Geriatrics 14:1.
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Sue L Davies, Claire Goodman, Jill Manthorpe, Adam Smith, Natasha Carrick & Steve Iliffe. (2014) Enabling research in care homes: an evaluation of a national network of research ready care homes. BMC Medical Research Methodology 14:1.
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Kerenza Hood, Jacqui Nuttall, David Gillespie, Victoria Shepherd, Fiona Wood, Donna Duncan, Helen Stanton, Aude Espinasse, Mandy Wootton, Aruna Acharjya, Stephen Allen, Antony Bayer, Ben Carter, David Cohen, Nick Francis, Robin Howe, Efi Mantzourani, Emma Thomas-Jones, Alun Toghill & Christopher C Butler. (2014) Probiotics for Antibiotic-Associated Diarrhoea (PAAD): a prospective observational study of antibiotic-associated diarrhoea (including Clostridium difficile-associated diarrhoea) in care homes. Health Technology Assessment 18:63, pages 1-84.
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Sarah Amador, Claire Goodman, Derek King, Yi Ting Ng, Natasha Elmore, Elspeth Mathie, Ina Machen & Martin Knapp. (2014) Exploring resource use and associated costs in end-of-life care for older people with dementia in residential care homes. International Journal of Geriatric Psychiatry 29:7, pages 758-766.
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Phyllida Coombes, Geoff Danaher & Patrick Alan Danaher. 2014. Echoes. Echoes 69 82 .
Claire Goodman, Sarah Amador, Natasha Elmore, Ina Machen & Elspeth Mathie. (2013) Preferences and priorities for ongoing and end-of-life care: A qualitative study of older people with dementia resident in care homes. International Journal of Nursing Studies 50:12, pages 1639-1647.
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Sarah Barnes, Anna Wasielewska, Christine Raiswell & Barbara Drummond. (2013) Exploring the mealtime experience in residential care settings for older people: an observational study. Health & Social Care in the Community 21:4, pages 442-450.
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. (2013) Current World Literature. Current Opinion in Psychiatry 26:3, pages 295-303.
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Elspeth Mathie, Claire Goodman, Clare Crang, Katherine Froggatt, Steve Iliffe, Jill Manthorpe & Stephen Barclay. (2011) An uncertain future: The unchanging views of care home residents about living and dying. Palliative Medicine 26:5, pages 734-743.
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Carole Parsons, Sarah Johnston, Elspeth Mathie, Natasha Baron, Ina Machen, Sarah Amador & Claire Goodman. (2012) Potentially Inappropriate Prescribing in Older People with Dementia in Care Homes. Drugs & Aging 29:2, pages 143-155.
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Carole Parsons, Jane Haydock, Elspeth Mathie, Natasha Baron, Ina Machen, Elizabeth Stevenson, Sarah Amador & Claire Goodman. (2011) Sedative load of medications prescribed for older people with dementia in care homes. BMC Geriatrics 11:1.
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