TY - JOUR AU - Sleeman, K. E. AU - Brito, M. AU - Etkind, S. AU - Nkhoma, K. AU - Guo, P. AU - Higginson, I. J. AU - Gomes, B. AU - Harding, R. PY - 2019 DA - 2019// TI - The escalating global burden of serious health-related suffering: projections to 2060 by world regions, age groups, and health conditions JO - Lancet Glob Health VL - 7 ID - Sleeman2019 ER - TY - JOUR AU - Knaul, F. M. AU - Farmer, P. E. AU - Krakauer, E. L. AU - Lima, L. AU - Bhadelia, A. AU - Jiang Kwete, X. AU - Arreola-Ornelas, H. AU - Gomez-Dantes, O. AU - Rodriguez, N. M. AU - Alleyne, G. A. O. PY - 2017 DA - 2017// TI - Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: the Lancet Commission report JO - Lancet. VL - 391 ID - Knaul2017 ER - TY - JOUR AU - Koffman, J. AU - Morgan, M. AU - Edmonds, P. AU - Speck, P. AU - Higginson, I. J. PY - 2009 DA - 2009// TI - Vulnerability in palliative care research: findings from a qualitative study of black Caribbean and white British patients with advanced cancer JO - J Med Ethics VL - 35 ID - Koffman2009 ER - TY - BOOK PY - 2008 DA - 2008// TI - End of Life Care Strategy - promoting high quality care for adults at the end of life PB - Crown CY - London ID - ref4 ER - TY - BOOK AU - Neuberger, J. AU - Guthrie, C. AU - Aaronovitch, D. PY - 2013 DA - 2013// TI - More care, less pathway: a review of the Liverpool Care Pathway PB - Department of Health and Social Care CY - London ID - Neuberger2013 ER - TY - JOUR AU - Koffman, J. AU - Yorganci, E. AU - Yi, D. AU - Gao, W. AU - Murtagh, F. AU - Pickles, A. AU - Barclay, S. AU - Johnson, H. AU - Wilson, R. AU - Sampson, L. PY - 2019 DA - 2019// TI - Managing uncertain recovery for patients nearing the end of life in hospital: a mixed-methods feasibility cluster randomised controlled trial of the AMBER care bundle JO - Trials. VL - 20 ID - Koffman2019 ER - TY - JOUR AU - Goodwin, D. M. AU - Higginson, I. J. AU - Edwards, A. G. AU - Finlay, I. G. AU - Cook, A. M. AU - Hood, K. AU - Douglas, H. R. AU - Normand, C. E. PY - 2002 DA - 2002// TI - An evaluation of systematic reviews of palliative care services JO - J Palliat Care VL - 18 ID - Goodwin2002 ER - TY - JOUR AU - Lorenz, K. A. AU - Lynn, J. AU - Dy, S. M. AU - Shugarman, L. R. AU - Wilkinson, A. AU - Mularski, R. A. AU - Morton, S. C. AU - Hughes, R. G. AU - Hilton, L. K. AU - Maglione, M. PY - 2008 DA - 2008// TI - Evidence for improving palliative care at the end of life: a systematic review JO - Ann Intern Med VL - 148 ID - Lorenz2008 ER - TY - JOUR AU - Zimmermann, C. AU - Riechelmann, R. AU - Krzyzanowska, M. AU - Rodin, G. AU - Tannock, I. PY - 2008 DA - 2008// TI - Effectiveness of specialized palliative care: a systematic review JO - JAMA. VL - 299 ID - Zimmermann2008 ER - TY - BOOK AU - Gysels, M. AU - Higginson, I. J. PY - 2004 DA - 2004// TI - Improving supportive and palliative care for adults with cancer: research evidence PB - NICE CY - London ID - Gysels2004 ER - TY - JOUR AU - Finlay, I. G. AU - Higginson, I. J. AU - Goodwin, D. M. AU - Cook, A. M. AU - Edwards, A. G. AU - Hood, K. AU - Douglas, H. R. AU - Normand, C. E. PY - 2002 DA - 2002// TI - Palliative care in hospital, hospice, at home: results from a systematic review JO - AnnOncol. VL - 13 ID - Finlay2002 ER - TY - BOOK AU - Chan, R. W. J. PY - 2010 DA - 2010// TI - End-of-life care pathways for improving outcomes in caring for the dying PB - Sons CY - Chichester ID - Chan2010 ER - TY - JOUR AU - Higginson, I. J. AU - Finlay, I. G. AU - Goodwin, D. M. AU - Hood, K. AU - Edwards, A. G. AU - Cook, A. AU - Douglas, H. R. AU - Normand, C. E. PY - 2003 DA - 2003// TI - Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers? JO - J Pain Symptom Manag VL - 25 ID - Higginson2003 ER - TY - JOUR AU - Shepherd, V. AU - Griffith, R. AU - Sheehan, M. AU - Wood, F. AU - Hood, K. PY - 2018 DA - 2018// TI - Healthcare professionals’ understanding of the legislation governing research involving adults lacking mental capacity in England and Wales: a national survey JO - J Med Ethics VL - 44 ID - Shepherd2018 ER - TY - JOUR AU - Casarett, D. J. AU - Karlawish, J. H. PY - 2000 DA - 2000// TI - Are special ethical guidelines needed for palliative care research? JO - J Pain Symptom Manag VL - 20 ID - Casarett2000 ER - TY - JOUR AU - Dewing, J. PY - 2002 DA - 2002// TI - From ritual to relationship: a person centred approach to consent in qualitative research with older people who have dementia JO - Int J Soc Res Pract VL - 1 ID - Dewing2002 ER - TY - JOUR AU - Dewing, J. PY - 2007 DA - 2007// TI - Participatory research: a method for process consent with persons who have dementia JO - Dementia. VL - 6 ID - Dewing2007 ER - TY - BOOK PY - 2009 DA - 2009// TI - Dementia ethical issues PB - Nuffield Council on Bioethics CY - London ID - ref18 ER - TY - JOUR AU - Owen, G. S. AU - David, A. S. AU - Richardson, G. AU - Szmukler, G. AU - Hayward, P. AU - Hotopf, M. PY - 2009 DA - 2009// TI - Mental capacity, diagnosis and insight in psychiatric in-patients: a cross-sectional study JO - Psychol Med VL - 39 ID - Owen2009 ER - TY - JOUR AU - Lemaire, F. AU - Blanch, L. AU - Cohen, S. L. AU - Sprung, C. PY - 1997 DA - 1997// TI - Informed consent for research purposes in intensive care patients in Europe--part II. An official statement of the European Society of Intensive Care Medicine. Working group on ethics JO - Intensive Care Med VL - 23 ID - Lemaire1997 ER - TY - JOUR AU - West, E. AU - Stuckelberger, A. AU - Pautex, S. AU - Staaks, J. AU - Gysels, M. PY - 2017 DA - 2017// TI - Operationalising ethical challenges in dementia research--a systematic review of current evidence JO - Age Ageing VL - 46 ID - West2017 ER - TY - JOUR AU - Hostiuc, S. AU - Rusu, M. C. AU - Negoi, I. AU - Drima, E. PY - 2018 DA - 2018// TI - Testing decision-making competency of schizophrenia participants in clinical trials. A meta-analysis and meta-regression JO - BMC Psychiatry VL - 18 ID - Hostiuc2018 ER - TY - JOUR AU - Mukherjee, A. AU - Livinski, A. A. AU - Millum, J. AU - Chamut, S. AU - Boroumand, S. AU - Iafolla, T. J. AU - Adesanya, M. R. AU - Dye, B. A. PY - 2017 DA - 2017// TI - Informed consent in dental care and research for the older adult population JO - J Am Dental Assoc VL - 148 ID - Mukherjee2017 ER - TY - JOUR AU - Sugarman, J. AU - McCrory, D. C. AU - Hubal, R. C. PY - 1998 DA - 1998// TI - Getting meaningful informed consent from older adults: a structured literature review of empirical research JO - J Am Geriatr Soc VL - 46 ID - Sugarman1998 ER - TY - JOUR AU - Wohleber, A. M. AU - McKitrick, D. S. AU - Davis, S. E. PY - 2012 DA - 2012// TI - Designing research with hospice and palliative care populations JO - Am J Hosp Palliat Med VL - 29 ID - Wohleber2012 ER - TY - JOUR AU - Boland, J. AU - Currow, D. C. AU - Wilcock, A. AU - Tieman, J. AU - Hussain, J. A. AU - Pitsillides, C. AU - Abernethy, A. P. AU - Johnson, M. J. PY - 2015 DA - 2015// TI - A systematic review of strategies used to increase recruitment of people with cancer or organ failure into clinical trials: implications for palliative care research JO - J Pain Symptom Manag VL - 49 ID - Boland2015 ER - TY - JOUR AU - Bruera, E. AU - Hui, D. AU - Dalal, S. AU - Torres-Vigil, I. AU - Trumble, J. AU - Roosth, J. AU - Krauter, S. AU - Strickland, C. AU - Unger, K. AU - Palmer, J. L. PY - 2013 DA - 2013// TI - Parenteral hydration in patients with advanced cancer: a multicenter, double-blind, placebo-controlled randomized trial JO - J Clin Oncol VL - 31 ID - Bruera2013 ER - TY - JOUR AU - Higginson, I. J. AU - Evans, C. J. AU - Grande, G. AU - Preston Nancy, J. AU - Morgan, M. AU - McCrone, P. AU - Lewis, P. AU - Fayers, P. AU - Harding, R. AU - Hotopf, M. PY - 2013 DA - 2013// TI - Evaluating complex interventions in End of Life Care: the MORECare Statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews JO - BMC Med VL - 11 ID - Higginson2013 ER - TY - BOOK PY - 2005 DA - 2005// TI - Mental Capacity Act PB - Department of Health CY - London ID - ref29 ER - TY - JOUR PY - 2001 DA - 2001// TI - World Medical Association Declaration of Helsinki. Ethical principles for medical research involving human subjects JO - Bull World Health Organ VL - 79 ID - ref30 ER - TY - JOUR AU - Fink, A. AU - Kosecoff, J. AU - Chassin, M. AU - Brook, R. PY - 1984 DA - 1984// TI - Consensus methods: characteristics and guidelines for use JO - Am J Public Health VL - 74 ID - Fink1984 ER - TY - JOUR AU - Sinha, I. P. AU - Smyth, R. L. AU - Williamson, P. R. PY - 2011 DA - 2011// TI - Using the Delphi technique to determine which outcomes to measure in clinical trials: recommendations for the future based on a systematic review of existing studies JO - PLoS Med VL - 8 ID - Sinha2011 ER - TY - BOOK AU - Pope, C. AU - Mays, N. AU - Popay, J. PY - 2007 DA - 2007// TI - Synthesizing qualitative and quantitative health evidence: a guide to methods PB - Open University Press, McGraw Hill Education CY - Maidenhead and New York ID - Pope2007 ER - TY - JOUR AU - Moher, D. AU - Shamseer, L. AU - Clarke, M. AU - Ghersi, D. AU - Liberati, A. AU - Petticrew, M. AU - Shekelle, P. AU - Stewart, L. A. PY - 2015 DA - 2015// TI - Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement JO - Syst Rev VL - 4 ID - Moher2015 ER - TY - STD TI - Kmet LM, Lee RC, Cook LS. Standard quality assessment criteria for evaluating primary research papers from a variety of fields: Alberta Heritage Foundation for Medical Research; 2004. ID - ref35 ER - TY - BOOK PY - 2002 DA - 2002// TI - Cochrane effective practice and organisation of care review group. Data collection checklist. In PB - Cochrane Effective Practice and Organisation of Care CY - Ottowa ID - ref36 ER - TY - STD TI - Endnote X8. http://endnote.com/.Accessed 2 Nov 2016. UR - http://endnote.com/ ID - ref37 ER - TY - CHAP AU - Jones, J. AU - Hunter, D. ED - Mays, N. ED - Pope, C. PY - 1999 DA - 1999// TI - Consensus methods for medical and health services research BT - Qualitative research in health care PB - British Medical Journal Publishing Group CY - London ID - Jones1999 ER - TY - STD TI - Jones L, Harrington J, Scott S, Davis S, Lord K, Vickerstaff V, Round J, Candy B, Sampson EL. CoMPASs: IOn programme (Care Of Memory Problems in Advanced Stages of dementia: Improving Our Knowledge): protocol for a mixed methods study. BMJ Open. 2012;2(6). ID - ref39 ER - TY - JOUR AU - Sampson, E. L. AU - Candy, B. AU - Davis, S. AU - Gola, A. B. AU - Harrington, J. AU - King, M. AU - Kupeli, N. AU - Leavey, G. AU - Moore, K. AU - Nazareth, I. PY - 2018 DA - 2018// TI - Living and dying with advanced dementia: a prospective cohort study of symptoms, service use and care at the end of life JO - Palliat Med VL - 32 ID - Sampson2018 ER - TY - JOUR AU - Scott, S. AU - Jones, L. AU - Blanchard, M. R. AU - Sampson, E. L. PY - 2011 DA - 2011// TI - Study protocol: the behaviour and pain in dementia study (BePAID) JO - BMC Geriatr VL - 11 ID - Scott2011 ER - TY - JOUR AU - Sampson, E. L. AU - White, N. AU - Lord, K. AU - Leurent, B. AU - Vickerstaff, V. AU - Scott, S. AU - Jones, L. PY - 2015 DA - 2015// TI - Pain, agitation, and behavioural problems in people with dementia admitted to general hospital wards: a longitudinal cohort study JO - Pain. VL - 156 ID - Sampson2015 ER - TY - JOUR AU - Dobratz, M. C. PY - 2003 DA - 2003// TI - Issues and dilemmas in conducting research with vulnerable home hospice participants JO - J Nurs Scholarsh VL - 35 ID - Dobratz2003 ER - TY - JOUR AU - Chouliara, Z. AU - Kearney, N. AU - Worth, A. AU - Stott, D. PY - 2004 DA - 2004// TI - Challenges in conducting research with hospitalized older people with cancer: drawing from the experience of an ongoing interview-based project JO - Eur J Cancer Care VL - 13 ID - Chouliara2004 ER - TY - JOUR AU - Gysels, M. AU - Evans, C. J. AU - Lewis, P. AU - Speck, P. AU - Benalia, H. AU - Preston, N. J. AU - Grande, G. E. AU - Short, V. AU - Owen-Jones, E. AU - Todd, C. J. PY - 2013 DA - 2013// TI - MORECare research methods guidance development: recommendations for ethical issues in palliative and end-of-life care research JO - Palliat Med VL - 27 ID - Gysels2013 ER - TY - JOUR AU - Dunning, T. AU - Duggan, N. AU - Savage, S. AU - Martin, P. PY - 2013 DA - 2013// TI - Diabetes and end of life: ethical and methodological issues in gathering evidence to guide care JO - Scand J Caring Sci VL - 27 ID - Dunning2013 ER - TY - JOUR AU - Warren, J. W. AU - Sobal, J. AU - Tenney, J. H. AU - Hoopes, J. M. AU - Damron, D. AU - Levenson, S. AU - DeForge, B. R. AU - Muncie, H. L. PY - 1986 DA - 1986// TI - Informed consent by proxy JO - N Engl J Med VL - 315 ID - Warren1986 ER - TY - JOUR AU - Fowell, A. AU - Johnstone, R. AU - Finlay, I. G. AU - Russell, D. AU - Russell, I. T. PY - 2006 DA - 2006// TI - Design of trials with dying patients: a feasibility study of cluster randomisation versus randomised consent JO - Palliat Med VL - 20 ID - Fowell2006 ER - TY - JOUR AU - Gardiner, C. AU - Gott, M. AU - Ingleton, C. AU - Seymour, J. AU - Cobb, M. AU - Noble, B. AU - Bennett, M. AU - Ryan, T. PY - 2013 DA - 2013// TI - Extent of palliative care need in the acute hospital setting: a survey of two acute hospitals in the UK JO - Palliat Med VL - 27 ID - Gardiner2013 ER - TY - JOUR AU - Myers, J. B. PY - 2018 DA - 2018// TI - Improving decisions about transport to the emergency department for assisted living residents who fall JO - Ann Intern Med VL - 168 ID - Myers2018 ER - TY - JOUR AU - Abernethy, A. P. AU - Currow, D. C. AU - Hunt, R. AU - Williams, H. AU - Roder-Allen, G. AU - Rowett, D. AU - Shelby-James, T. AU - Esterman, A. AU - May, F. AU - Phillips, P. A. PY - 2006 DA - 2006// TI - A pragmatic 2 x 2 x 2 factorial cluster randomized controlled trial of educational outreach visiting and case conferencing in palliative care-methodology of the Palliative Care Trial [ISRCTN 81117481] JO - Contemp Intern Med VL - 27 ID - Abernethy2006 ER - TY - JOUR AU - Whelan, P. J. AU - Walwyn, R. AU - Gaughran, F. AU - Macdonald, A. PY - 2013 DA - 2013// TI - Impact of the demand for ‘proxy assent’ on recruitment to a randomised controlled trial of vaccination testing in care homes JO - J Med Ethics VL - 39 ID - Whelan2013 ER - TY - JOUR AU - Davies, A. N. AU - Waghorn, M. AU - Webber, K. AU - Johnsen, S. AU - Mendis, J. AU - Boyle, J. PY - 2018 DA - 2018// TI - A cluster randomised feasibility trial of clinically assisted hydration in cancer patients in the last days of life JO - Palliat Med VL - 32 ID - Davies2018 ER - TY - JOUR AU - Rees, E. AU - Hardy, J. PY - 2003 DA - 2003// TI - Novel consent process for research in dying patients unable to give consent JO - BMJ. VL - 327 ID - Rees2003 ER - TY - JOUR AU - Irwin, S. AU - Zurhellen, C. AU - Diamond, L. AU - Dunn, L. AU - Palmer, B. AU - Jeste, D. AU - Twamley, E. PY - 2008 DA - 2008// TI - Unrecognised cognitive impairment in hospice patients: a pilot study JO - Palliat Med VL - 22 ID - Irwin2008 ER - TY - JOUR AU - Henwood, T. R. AU - Keogh, J. W. AU - Reid, N. AU - Jordan, W. AU - Senior, H. E. PY - 2014 DA - 2014// TI - Assessing sarcopenic prevalence and risk factors in residential aged care: methodology and feasibility JO - J Cachexia Sarcopenia Muscle VL - 5 ID - Henwood2014 ER - TY - JOUR AU - Wood, F. AU - Prout, H. AU - Bayer, A. AU - Duncan, D. AU - Nuttall, J. AU - Hood, K. AU - Butler, C. C. PY - 2013 DA - 2013// TI - Consent, including advanced consent, of older adults to research in care homes: a qualitative study of stakeholders’ views in South Wales JO - Trials. VL - 14 ID - Wood2013 ER - TY - JOUR AU - Kleiderman, E. AU - Avard, D. AU - Black, L. AU - Diaz, Z. AU - Rousseau, C. AU - Knoppers, B. M. PY - 2012 DA - 2012// TI - Recruiting terminally ill patients into non-therapeutic oncology studies: views of health professionals JO - BMC Med Ethics VL - 13 ID - Kleiderman2012 ER - TY - JOUR AU - Buckles, V. AU - Powlishta, K. AU - Palmer, J. AU - Coats, M. AU - Hosto, T. AU - Buckley, A. AU - Morris, J. PY - 2003 DA - 2003// TI - Understanding of informed consent by demented individuals JO - Neurology. VL - 61 ID - Buckles2003 ER - TY - JOUR AU - Black, B. S. AU - Kass, N. E. AU - Fogarty, L. A. AU - Rabins, P. V. PY - 2007 DA - 2007// TI - Informed consent for dementia research: the study enrollment encounter JO - IRB Ethics Hum Res VL - 29 ID - Black2007 ER - TY - JOUR AU - Mittal, D. AU - Palmer, B. W. AU - Dunn, L. B. AU - Landes, R. AU - Ghormley, C. AU - Beck, C. AU - Golshan, S. AU - Blevins, D. AU - Jeste, D. V. PY - 2007 DA - 2007// TI - Comparison of two enhanced consent procedures for patients with mild Alzheimer disease or mild cognitive impairment JO - Am J Geriatr Psychiatry VL - 15 ID - Mittal2007 ER - TY - JOUR AU - Palmer, B. W. AU - Harmell, A. L. AU - Dunn, L. B. AU - Kim, S. Y. AU - Pinto, L. L. AU - Golshan, S. AU - Jeste, D. V. PY - 2018 DA - 2018// TI - Multimedia aided consent for Alzheimer’s disease research JO - Clin Gerontol VL - 41 ID - Palmer2018 ER - TY - JOUR AU - Rubright, J. AU - Casarett, D. J. AU - Gur, R. AU - Xie, S. X. AU - Karlawish, J. AU - Sankar, P. PY - 2010 DA - 2010// TI - A memory and organizational aid improves Alzheimer disease research consent capacity: results of a randomized, controlled trial JO - Am J Geriatr Psychiatry VL - 18 ID - Rubright2010 ER - TY - JOUR AU - Olazarán, J. AU - Agüera-Ortiz, L. AU - Osorio, R. S. AU - León-Salas, B. AU - Dobato, J. L. AU - Cruz-Orduña, I. AU - González, B. AU - Valentí, M. AU - Gil-Ruiz, N. AU - Frades, B. PY - 2012 DA - 2012// TI - Promoting research in advanced dementia: early clinical results of the Alzheimer Center Reina Sofía Foundation JO - J Alzheimers Dis VL - 28 ID - Olazarán2012 ER - TY - JOUR AU - Hughes, T. AU - Castro, R. M. PY - 2015 DA - 2015// TI - A processural consent methodology with people diagnosed with dementia JO - Qual Ageing Older Adults VL - 16 ID - Hughes2015 ER - TY - JOUR AU - Kim, S. Y. AU - Karlawish, J. H. AU - Kim, H. M. AU - Wall, I. F. AU - Bozoki, A. C. AU - Appelbaum, P. S. PY - 2011 DA - 2011// TI - Preservation of the capacity to appoint a proxy decision maker: implications for dementia research JO - Arch Gen Psychiatry VL - 68 ID - Kim2011 ER - TY - JOUR AU - Karlawish, J. AU - Kim, S. Y. AU - Knopman, D. AU - Dyck, C. H. AU - James, B. D. AU - Marson, D. PY - 2008 DA - 2008// TI - The views of Alzheimer disease patients and their study partners on proxy consent for clinical trial enrollment JO - Am J Geriatr Psychiatry VL - 16 ID - Karlawish2008 ER - TY - STD TI - Gainotti S, Imperatori SF, Spila-Alegiani S, Maggiore L, Galeotti F, Vanacore N, Petrini C, Raschetti R, Mariani C, Clerici F. How are the interests of incapacitated research participants protected through legislation? An Italian study on legal agency for dementia patients. PLoS One. 2010;5(6). ID - ref68 ER - TY - JOUR AU - Agarwal, M. R. AU - Ferran, J. AU - Ost, K. AU - WILSON, K. C. PY - 1996 DA - 1996// TI - Ethics of ‘informed consent’in dementia research—the debate continues JO - Int J Geriatric Psychiatry VL - 11 ID - Agarwal1996 ER - TY - JOUR AU - Cowdell, F. PY - 2008 DA - 2008// TI - Engaging older people with dementia in research: myth or possibility JO - Int J Older People Nursing VL - 3 ID - Cowdell2008 ER - TY - STD TI - Siminoff LA, Caputo M, Burant C. The promise of empirical research in the study of informed consent theory and practice. In: Hec Forum: 2004: Springer Science & Business Media; 2004. p. 53. ID - ref71 ER - TY - JOUR AU - Warner, J. AU - McCarney, R. AU - Griffin, M. AU - Hill, K. AU - Fisher, P. PY - 2007 DA - 2007// TI - Participation in dementia research: rates and correlates of capacity to give informed consent JO - J Med Ethics VL - 34 ID - Warner2007 ER - TY - JOUR AU - Black, B. S. AU - Finucane, T. AU - Baker, A. AU - Loreck, D. AU - Blass, D. AU - Fogarty, L. AU - Phillips, H. AU - Hovanec, L. AU - Steele, C. AU - Rabins, P. V. PY - 2006 DA - 2006// TI - Health problems and correlates of pain in nursing home residents with advanced dementia JO - Alzheimer Dis Assoc Disord VL - 20 ID - Black2006 ER - TY - JOUR AU - Goodman, C. AU - Baron, N. AU - Machen, I. AU - Stevenson, E. AU - Evans, C. AU - Davies, S. AU - Illiffe, S. PY - 2011 DA - 2011// TI - Culture, consent, sosts and care homes: enabling older people with dementai to participate in research JO - Aging Ment Health VL - 15 ID - Goodman2011 ER - TY - JOUR AU - Hanson, L. C. AU - Gilliam, R. AU - Tae, J. L. PY - 2010 DA - 2010// TI - Successful clinical trial research in nursing homes: the improving decision-making study JO - Clin Trials VL - 7 ID - Hanson2010 ER - TY - JOUR AU - Baskin, S. A. AU - Morris, J. AU - Ahronheim, J. C. AU - Meier, D. E. AU - Morrison, R. S. PY - 1998 DA - 1998// TI - Barriers to obtaining consent in dementia research: implications for surrogate decision-making JO - J Am Geriatr Soc VL - 46 ID - Baskin1998 ER - TY - JOUR AU - Mitchell, S. L. AU - Kiely, D. K. AU - Jones, R. N. AU - Prigerson, H. AU - Volicer, L. AU - Teno, J. M. PY - 2006 DA - 2006// TI - Advanced dementia research in the nursing home: the CASCADE study JO - Alzheimer Dis Assoc Disord VL - 20 ID - Mitchell2006 ER - TY - JOUR AU - Ellis-Smith, C. AU - Higginson, I. J. AU - Daveson, B. A. AU - Henson, L. A. AU - Evans, C. J. PY - 2018 DA - 2018// TI - BuildCare: 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 JO - PLoS One VL - 13 ID - Ellis-Smith2018 ER - TY - JOUR AU - Galeotti, F. AU - Vanacore, N. AU - Gainotti, S. AU - Izzicupo, F. AU - Menniti-Ippolito, F. AU - Petrini, C. AU - Chiarotti, F. AU - Chattat, R. AU - Raschetti, R. PY - 2012 DA - 2012// TI - How legislation on decisional capacity can negatively affect the feasibility of clinical trials in patients with dementia JO - Drugs Aging VL - 29 ID - Galeotti2012 ER - TY - JOUR AU - Kim, S. Y. AU - Kim, H. M. AU - McCallum, C. AU - Tariot, P. N. PY - 2005 DA - 2005// TI - What do people at risk for Alzheimer disease think about surrogate consent for research? JO - Neurology. VL - 65 ID - Kim2005 ER - TY - JOUR AU - Rikkert, M. AU - Bercken, J. AU - Have, H. AU - Hoefnagels, W. PY - 1997 DA - 1997// TI - Experienced consent in geriatrics research: a new method to optimize the capacity to consent in frail elderly subjects JO - J Med Ethics VL - 23 ID - Rikkert1997 ER - TY - JOUR AU - Sudore, R. L. AU - Landefeld, C. S. AU - Williams, B. A. AU - Barnes, D. E. AU - Lindquist, K. AU - Schillinger, D. PY - 2006 DA - 2006// TI - Use of a modified informed consent process among vulnerable patients: a descriptive study JO - J Gen Intern Med VL - 21 ID - Sudore2006 ER - TY - JOUR AU - Mason, S. AU - Barrow, H. AU - Phillips, A. AU - Eddison, G. AU - Nelson, A. AU - Cullum, N. AU - Nixon, J. PY - 2006 DA - 2006// TI - Brief report on the experience of using proxy consent for incapacitated adults JO - J Med Ethics VL - 32 ID - Mason2006 ER - TY - JOUR AU - Davies, K. AU - Collerton, J. C. AU - Jagger, C. AU - Bond, J. AU - Barker, S. A. AU - Edwards, J. AU - Hughes, J. AU - Hunt, J. M. AU - Robinson, L. PY - 2010 DA - 2010// TI - Engaging the oldest old in research: lessons from the Newcastle 85+ study JO - BMC Geriatr VL - 10 ID - Davies2010 ER - TY - JOUR AU - Botker, M. T. AU - Jorgensen, M. T. AU - Stengaard, C. AU - Seidenfaden, S. C. AU - Tarpgaard, M. AU - Granfeldt, A. AU - Mortensen, T. O. AU - Grofte, T. AU - Friesgaard, K. D. AU - Maerkedahl, R. PY - 2018 DA - 2018// TI - Prehospital triage of patients suffering severe dyspnoea using N-terminal pro-brain natriuretic peptide, the PreBNP trial: a randomised controlled clinical trial JO - Eur Heart J Acute Cardiovasc Care VL - 7 ID - Botker2018 ER - TY - JOUR AU - Ford, M. AU - Kallen, M. AU - Richardson, P. AU - Matthiesen, E. AU - Cox, V. AU - Teng, E. AU - Cook, K. AU - Petersen, N. PY - 2008 DA - 2008// TI - Effect of social support on informed consent in older adults with Parkinson disease and their caregivers JO - J Med Ethics VL - 34 ID - Ford2008 ER - TY - JOUR AU - Thomalla, G. AU - Boutitie, F. AU - Fiebach, J. B. AU - Simonsen, C. Z. AU - Nighoghossian, N. AU - Pedraza, S. AU - Lemmens, R. AU - Roy, P. AU - Muir, K. W. AU - Heesen, C. PY - 2017 DA - 2017// TI - Effect of informed consent on patient characteristics in a stroke thrombolysis trial JO - Neurology. VL - 89 ID - Thomalla2017 ER - TY - JOUR AU - Boxall, L. AU - Hemsley, A. AU - White, N. PY - 2016 DA - 2016// TI - Exploring recruitment issues in stroke research: a qualitative study of nurse researchers’ experiences JO - Nurs Res VL - 23 ID - Boxall2016 ER - TY - JOUR AU - Ali, K. AU - Roffe, C. AU - Crome, P. PY - 2006 DA - 2006// TI - What patients want: consumer involvement in the design of a randomized controlled trial of routine oxygen supplementation after acute stroke JO - Stroke. VL - 37 ID - Ali2006 ER - TY - JOUR AU - Moran-Sanchez, I. AU - Luna, A. AU - Perez-Carceles, M. D. PY - 2016 DA - 2016// TI - Assessment of capacity to consent to research among psychiatric outpatients: prevalence and associated factors JO - Psychiatry Q VL - 87 ID - Moran-Sanchez2016 ER - TY - JOUR AU - Harmell, A. L. AU - Palmer, B. W. AU - Jeste, D. V. PY - 2012 DA - 2012// TI - Preliminary study of a web-based tool for enhancing the informed consent process in schizophrenia research JO - Schizophr Res VL - 141 ID - Harmell2012 ER - TY - JOUR AU - Jeste, D. V. AU - Palmer, B. W. AU - Golshan, S. AU - Eyler, L. T. AU - Dunn, L. B. AU - Meeks, T. AU - Glorioso, D. AU - Fellows, I. AU - Kraemer, H. AU - Appelbaum, P. S. PY - 2009 DA - 2009// TI - Multimedia consent for research in people with schizophrenia and normal subjects: a randomized controlled trial JO - Schizophr Bull VL - 35 ID - Jeste2009 ER - TY - BOOK AU - Moser, D. J. AU - Reese, R. L. AU - Hey, C. T. AU - Schultz, S. K. AU - Arndt, S. AU - Beglinger, L. J. AU - Duff, K. M. AU - Andreasen, N. C. PY - 2006 DA - 2006// TI - Using a brief intervention to improve decisional capacity in schizophrenia research ID - Moser2006 ER - TY - JOUR AU - Campbell, M. M. AU - Susser, E. AU - Mall, S. AU - Mqulwana, S. G. AU - Mndini, M. M. AU - Ntola, O. A. AU - Nagdee, M. AU - Zingela, Z. AU - Wyk, S. AU - Stein, D. J. PY - 2017 DA - 2017// TI - Using iterative learning to improve understanding during the informed consent process in a South African psychiatric genomics study JO - PLoS ONE VL - 12 ID - Campbell2017 ER - TY - JOUR AU - Carey, E. AU - Griffiths, C. PY - 2017 DA - 2017// TI - Recruitment and consent of adults with intellectual disabilities in a classic grounded theory research study: ethical and methodological considerations JO - Disabil Soc VL - 32 ID - Carey2017 ER - TY - JOUR AU - Ramerman, L. AU - Hoekstra, P. J. AU - Kuijper, G. PY - 2018 DA - 2018// TI - Health-related quality of life in people with intellectual disability who use long-term antipsychotic drugs for challenging behaviour JO - Res Dev Disabil VL - 75 ID - Ramerman2018 ER - TY - JOUR AU - Ho, P. AU - Downs, J. AU - Bulsara, C. AU - Patman, S. AU - Hill, A. M. PY - 2018 DA - 2018// TI - Addressing challenges in gaining informed consent for a research study investigating falls in people with intellectual disability JO - Br J Learn Disabil VL - 46 ID - Ho2018 ER - TY - JOUR AU - Hamilton, J. AU - Ingham, B. AU - McKinnon, I. AU - Parr, J. R. AU - Tam, L. Y. C. AU - Couteur, A. PY - 2017 DA - 2017// TI - Mental capacity to consent to research? Experiences of consenting adults with intellectual disabilities and/or autism to research JO - Br J Learn Disabil VL - 45 ID - Hamilton2017 ER - TY - JOUR AU - Adamis, D. AU - Martin, F. AU - Treloar, A. AU - Macdonald, A. PY - 2005 DA - 2005// TI - Capacity, consent, and selection bias in a study of delirium JO - J Med Ethics VL - 31 ID - Adamis2005 ER - TY - JOUR AU - Adamis, D. AU - Treloar, A. AU - Martin, F. C. AU - Macdonald, A. J. PY - 2010 DA - 2010// TI - Ethical research in delirium: arguments for including decisionally incapacitated subjects JO - Sci Eng Ethics VL - 16 ID - Adamis2010 ER - TY - JOUR AU - Marcantonio, E. R. AU - Bergmann, M. A. AU - Kiely, D. K. AU - Orav, E. J. AU - Jones, R. N. PY - 2010 DA - 2010// TI - Randomized trial of a delirium abatement program for postacute skilled nursing facilities JO - J Am Geriatr Soc VL - 58 ID - Marcantonio2010 ER - TY - JOUR AU - Cole, M. G. AU - McCusker, J. AU - Bellavance, F. AU - Primeau, F. J. AU - Bailey, R. F. AU - Bonnycastle, M. J. AU - Laplante, J. PY - 2002 DA - 2002// TI - Systematic detection and multidisciplinary care of delirium in older medical inpatients: a randomized trial JO - Can Med Assoc J VL - 167 ID - Cole2002 ER - TY - JOUR AU - Mangset, M. AU - Forde, R. AU - Nessa, J. AU - Berge, E. AU - Wyller, T. B. PY - 2008 DA - 2008// TI - I don’t like that, it’s tricking people too much...: acute informed consent to participation in a trial of thrombolysis for stroke JO - J Med Ethics VL - 34 ID - Mangset2008 ER - TY - JOUR AU - Honarmand, K. AU - Belley-Cote, E. P. AU - Ulic, D. AU - Khalifa, A. AU - Gibson, A. AU - McClure, G. AU - Savija, N. AU - Alshamsi, F. AU - D’Aragon, F. AU - Rochwerg, B. PY - 2018 DA - 2018// TI - The deferred consent model in a prospective observational study evaluating myocardial injury in the intensive care unit JO - J Intensive Care Med VL - 33 ID - Honarmand2018 ER - TY - JOUR AU - Bolcic-Jankovic, D. AU - Clarridge, B. R. AU - LeBlanc, J. L. AU - Mahmood, R. S. AU - Roman, A. M. AU - Freeman, B. D. PY - 2014 DA - 2014// TI - Exploring determinants of surrogate decision-maker confidence: an example from the ICU JO - J Empir Res Hum Res Ethics VL - 9 ID - Bolcic-Jankovic2014 ER - TY - JOUR AU - Levine, A. C. AU - Barry, M. A. AU - Agrawal, P. AU - Duber, H. C. AU - Chang, M. P. AU - Mackey, J. M. AU - Hansoti, B. PY - 2017 DA - 2017// TI - Global Emergency Medicine Think Tank Clinical Research Working G:Global health and emergency care: overcoming clinical research barriers JO - Acad Emerg Med VL - 24 ID - Levine2017 ER - TY - JOUR AU - Smith, O. M. AU - McDonald, E. AU - Zytaruk, N. AU - Foster, D. AU - Matte, A. AU - Clarke, F. AU - Fleury, S. AU - Krause, K. AU - McArdle, T. AU - Skrobik, Y. PY - 2013 DA - 2013// TI - Enhancing the informed consent process for critical care research: strategies from a thromboprophylaxis trial JO - Intensive Crit Care Nurs VL - 29 ID - Smith2013 ER - TY - JOUR AU - Offerman, S. R. AU - Nishijima, D. K. AU - Ballard, D. W. AU - Chetipally, U. K. AU - Vinson, D. R. AU - Holmes, J. F. PY - 2013 DA - 2013// TI - The use of delayed telephone informed consent for observational emergency medicine research is ethical and effective JO - Acad Emerg Med VL - 20 ID - Offerman2013 ER - TY - JOUR AU - Day, T. L. AU - Bench, S. D. AU - Griffiths, P. D. PY - 2015 DA - 2015// TI - The role of pilot testing for a randomised control trial of a complex intervention in critical care JO - J Res Nurs VL - 20 ID - Day2015 ER - TY - JOUR AU - Bench, S. AU - Day, T. AU - Heelas, K. AU - Hopkins, P. AU - White, C. AU - Griffiths, P. PY - 2015 DA - 2015// TI - Evaluating the feasibility and effectiveness of a critical care discharge information pack for patients and their families: a pilot cluster randomised controlled trial JO - BMJ Open VL - 5 ID - Bench2015 ER - TY - JOUR AU - Higginson, I. J. AU - Rumble, C. AU - Shipman, C. AU - Koffman, J. AU - Sleeman, K. E. AU - Morgan, M. AU - Hopkins, P. AU - Noble, J. AU - Bernal, W. AU - Leonard, S. PY - 2016 DA - 2016// TI - The value of uncertainty in critical illness? An ethnographic study of patterns and conflicts in care and decision-making trajectories JO - BMC Anesthesiol VL - 16 ID - Higginson2016 ER - TY - JOUR AU - Rouze, A. AU - Loridant, S. AU - Poissy, J. AU - Cornu, M. AU - Nseir, S. AU - Sendid, B. PY - 2018 DA - 2018// TI - Impact of the use of biomarkers on early discontinuation of empirical antifungal therapy in critically ill patients: a randomised controlled study JO - Med Mycol VL - 56 ID - Rouze2018 ER - TY - JOUR AU - Buckley, J. M. AU - Irving, A. D. AU - Goodacre, S. PY - 2016 DA - 2016// TI - How do patients feel about taking part in clinical trials in emergency care? JO - Emerg Med J VL - 33 ID - Buckley2016 ER - TY - JOUR AU - Beinum, A. AU - Hornby, L. AU - Dhanani, S. AU - Ward, R. AU - Chambers-Evans, J. AU - Menon, K. PY - 2017 DA - 2017// TI - Feasibility of conducting prospective observational research on critically ill, dying patients in the intensive care unit JO - J Med Ethics VL - 43 ID - Beinum2017 ER - TY - JOUR AU - Kamarainen, A. AU - Silfvast, T. AU - Saarinen, S. AU - Virta, J. AU - Virkkunen, I. PY - 2012 DA - 2012// TI - Conduct of emergency research in patients unable to give consent--experiences and perceptions of patients, their consent providing next of kin, and treating physicians following a prehospital resuscitation trial JO - Resuscitation. VL - 83 ID - Kamarainen2012 ER - TY - JOUR AU - Barrett, K. A. AU - Ferguson, N. D. AU - Athaide, V. AU - Cook, D. J. AU - Friedrich, J. O. AU - McDonald, E. AU - Pinto, R. AU - Smith, O. M. AU - Stevenson, J. AU - Scales, D. C. PY - 2012 DA - 2012// TI - Surrogate decision makers' attitudes towards research decision making for critically ill patients JO - Intensive Care Med VL - 38 ID - Barrett2012 ER - TY - JOUR AU - Gong, M. N. AU - Winkel, G. AU - Rhodes, R. AU - Richardson, L. D. AU - Silverstein, J. H. PY - 2010 DA - 2010// TI - Surrogate consent for research involving adults with impaired decision making: survey of Institutional Review Board practices JO - Crit Care Med VL - 38 ID - Gong2010 ER - TY - JOUR AU - Burns, K. E. AU - Magyarody, N. M. AU - Duffett, M. AU - Nisenbaum, R. AU - Cook, D. J. PY - 2011 DA - 2011// TI - Attitudes of the general public toward alternative consent models JO - Am J Crit Care VL - 20 ID - Burns2011 ER - TY - JOUR AU - Kim, S. Y. AU - Kim, H. M. AU - Knopman, D. S. AU - Vries, R. AU - Damschroder, L. AU - Appelbaum, P. S. PY - 2011 DA - 2011// TI - Effect of public deliberation on attitudes toward surrogate consent for dementia research JO - Neurology. VL - 77 ID - Kim2011 ER - TY - JOUR AU - Karlawish, J. AU - Rubright, J. AU - Casarett, D. AU - Cary, M. AU - Have, T. AU - Sankar, P. PY - 2009 DA - 2009// TI - Older adults’ attitudes toward enrollment of non-competent subjects participating in Alzheimer’s research JO - Am J Psychiatry VL - 166 ID - Karlawish2009 ER - TY - JOUR AU - Bravo, G. AU - Dubois, M. -. F. AU - Cohen, C. A. AU - Wildeman, S. M. AU - Graham, J. E. PY - 2013 DA - 2013// TI - Surrogate consent for dementia research: factors influencing five stakeholder groups from the SCORES study JO - IRB Ethics Hum Res VL - 35 ID - Bravo2013 ER - TY - JOUR AU - Bravo, G. AU - Duguet, A. M. AU - Dubois, M. F. AU - Delpierre, C. AU - Vellas, B. PY - 2008 DA - 2008// TI - Substitute consent for research involving the elderly: a comparison between Quebec and France JO - J Cross Cult Gerontol VL - 23 ID - Bravo2008 ER - TY - JOUR AU - Farber, N. J. AU - Aboff, B. M. AU - DeJoseph, M. R. AU - Castellano, J. AU - Weiner, J. AU - Boyer, E. G. PY - 2004 DA - 2004// TI - Physicians’ understanding of consent requirements for phase I clinical trials in cognitively impaired or highly vulnerable populations JO - Account Res VL - 11 ID - Farber2004 ER - TY - JOUR AU - Kim, S. Y. AU - Kim, H. M. AU - Langa, K. M. AU - Karlawish, J. H. AU - Knopman, D. S. AU - Appelbaum, P. S. PY - 2009 DA - 2009// TI - Surrogate consent for dementia research: a national survey of older Americans JO - Neurology. VL - 72 ID - Kim2009 ER - TY - JOUR AU - Vries, R. AU - Ryan, K. A. AU - Stanczyk, A. AU - Appelbaum, P. S. AU - Damschroder, L. AU - Knopman, D. S. AU - Kim, S. Y. PY - 2013 DA - 2013// TI - Public’s approach to surrogate consent for dementia research: cautious pragmatism JO - Am J Geriatr Psychiatry VL - 21 ID - Vries2013 ER - TY - JOUR AU - Karlawish, J. H. AU - Knopman, D. AU - Clark, C. M. AU - Morris, J. C. AU - Marson, D. AU - Whitehouse, P. J. AU - Kawas, C. H. PY - 2002 DA - 2002// TI - Informed consent for Alzheimer’s disease clinical trials: a survey of clinical investigators JO - IRB. VL - 24 ID - Karlawish2002 ER - TY - JOUR AU - Cahill, M. AU - Wichman, A. PY - 2000 DA - 2000// TI - Research involving persons with cognitive impairments: results of a survey of Alzheimer disease research centers in the United States JO - Alzheimer Dis Assoc Disord VL - 14 ID - Cahill2000 ER - TY - JOUR AU - Vorm, A. AU - Vernooij-Dassen, M. J. AU - Kehoe, P. G. AU - Olde Rikkert, M. G. AU - Leeuwen, E. AU - Dekkers, W. J. PY - 2009 DA - 2009// TI - Ethical aspects of research into Alzheimer disease. A European Delphi Study focused on genetic and non-genetic research JO - J Med Ethics VL - 35 ID - Vorm2009 ER - TY - JOUR AU - Peterson, G. AU - Wallin, A. PY - 2003 DA - 2003// TI - Alzheimer disease ethics--informed consent and related issues in clinical trials: results of a survey among the members of the Research Ethics Committees in Sweden JO - Int Psychogeriatr VL - 15 ID - Peterson2003 ER - TY - JOUR AU - Garcia, J. AU - Evans, J. AU - Reshaw, M. PY - 2004 DA - 2004// TI - “Is there anything else you would like to tell us”- methodological issues int he use of free-text comments form postal surveys JO - Qual Quant VL - 38 ID - Garcia2004 ER - TY - JOUR AU - Dickert, N. W. AU - Hendershot, K. A. AU - Speight, C. D. AU - Fehr, A. E. PY - 2017 DA - 2017// TI - Patients’ views of consent in clinical trials for acute myocardial infarction: impact of trial design JO - J Med Ethics VL - 43 ID - Dickert2017 ER - TY - JOUR AU - Olazaran, J. AU - Aguera-Ortiz, L. AU - Osorio, R. S. AU - Leon-Salas, B. AU - Dobato, J. L. AU - Cruz-Orduna, I. AU - Gonzalez, B. AU - Valenti, M. AU - Gil-Ruiz, N. AU - Frades, B. PY - 2012 DA - 2012// TI - Promoting research in advanced dementia: early clinical results of the Alzheimer Center Reina Sofia Foundation JO - J Alzheimers Dis VL - 28 ID - Olazaran2012 ER - TY - JOUR AU - Gibbins, J. AU - Reid, C. M. AU - Bloor, S. AU - Burcombe, M. AU - McCoubrie, R. AU - Forbes, K. PY - 2013 DA - 2013// TI - Overcoming barriers to recruitment in care of the dying research in hospitals JO - J Pain Symptom Manag VL - 45 ID - Gibbins2013 ER - TY - JOUR PY - 2014 DA - 2014// TI - Regulation (EU) No 536/2014 on clinical trials on medicinal products for human use, and repealing Directive 2001/20/EC JO - Off J Eur Union VL - 57 ID - ref134 ER - TY - JOUR AU - Gysels, M. H. AU - Evans, C. AU - Higginson, I. J. PY - 2012 DA - 2012// TI - Patient, caregiver, health professional and researcher views and experiences of participating in research at the end of life: a critical interpretive synthesis of the literature JO - BMC Med Res Methodol VL - 12 ID - Gysels2012 ER - TY - BOOK AU - Foster, C. PY - 2001 DA - 2001// TI - The ethics of medical research on humans PB - Cambridge University Press CY - Cambridge ID - Foster2001 ER - TY - CHAP AU - Koffman, J. AU - Stone, K. AU - Murtagh, F. ED - Bruera, E. H. I. ED - Gunten, C. ED - Morita, T. PY - 2015 DA - 2015// TI - Ethics in palliative care research BT - Textbook of Palliative Medicine PB - CRC Press CY - London ID - Koffman2015 ER - TY - STD TI - University of Leicester UoB. Adults lacking capacity – on-line toolkit: NRES; 2010. ID - ref138 ER - TY - JOUR AU - Koffman, J. AU - Yorganci, E. AU - Murtagh, F. AU - Yi, D. AU - Gao, W. AU - Barclay, S. AU - Pickles, A. AU - Higginson, I. AU - Johnson, H. AU - Wilson, R. PY - 2019 DA - 2019// TI - The AMBER care bundle for hospital inpatients with uncertain recovery nearing the end of life: the ImproveCare feasibility cluster RCT JO - Health Technol Assess VL - 23 ID - Koffman2019 ER - TY - JOUR AU - Elm, E. AU - Altman, D. G. AU - Egger, M. AU - Pocock, S. J. AU - Gøtzsche, P. C. AU - Vandenbroucke, J. P. PY - 2007 DA - 2007// TI - The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies JO - Ann Intern Med VL - 147 ID - Elm2007 ER - TY - JOUR AU - Kaasa, S. AU - Dale, O. PY - 2005 DA - 2005// TI - Building up research in palliative care: an historical perspective and a case for the future JO - Clin Geriatr Med VL - 21 ID - Kaasa2005 ER -