Overview of selected research: Gaps in the research

This overview describes only a small proportion of the research and policy that is relevant to dignity in care. It is not possible, from this selection, to identify how comprehensively the subject has been studied. But researchers themselves draw attention to weaknesses in their own research and some remaining gaps:

• Many of the studies, which involve interviewing samples of older people using care services, have commented that people were selected by virtue of their capacity to take part in interviews and or complete questionnaires. By definition, people with dementia, other cognitive impairments or communication difficulties have been excluded, contributing to their relative absence from 'involvement’ activity in health and social care.
• Men have also frequently been under-represented in these samples.
• Limited research on the meaning and effects of ageism is reported, and its interaction with other forms of disadvantage and discrimination.
• The amount of research about older black and minority ethnic people is greater than in other areas of research on social care, but it still overlooks some key groups and factors.
• Other marginalised groups which are represented in the literature include gay and lesbian older people only rather rarely.

• MethodologyOpen

  The initial searches for references were undertaken at SCIE. Databases searched:

  • Medline
  • Psychoinfo
  • NHS EED
  • HMIC
  • SSA
  • NHS Evidence
  • Cochrane Collection
  • CINAHL
  • AMED
  • Social Work Abstracts
  • Social Services Abstracts.

  Additional references were found using: Google, Bing, Pdf-search-engine, Zuula SCIE Products searched included: Social Care TV, Dementia Gateway Key sources included DH Care Networks and the Department of Health. The references were imported into one integrated EndNote library, containing more than 150 references, arranged under key words. The references arrived at in this way were amplified by:

  • additional internet searches
  • hand-searching a number of journals
  • contacting a number of individual academic and other experts personally, for contacts and references, by phone and/or e-mail.

• ReferencesOpen

  • Addicott, R., & Ashton, R., eds. (2010). Delivering better care at end of life: The next steps., The King's Fund.
  • Agich, G. J. (2007). "Reflections on the function of dignity in the context of caring for old people." Journal of Medicine & Philosophy 32(5): 483–94.
  • Al-Shahri, M. A-K., A. (2005). ""Palliative Care for Muslim Patients"." The Journal of Supportive Oncology(3): 432-436.
  • Anderberg, P., M. Lepp et al. (2007). "Preserving dignity in caring for older adults: a concept analysis." Journal of Advanced Nursing 59(6): 635–643.
  • Andersson, M., I. R. Hallberg et al. (2008). "Old people receiving municipal care, their experiences of what constitutes a good life in the last phase of life: a qualitative study." International Journal of Nursing Studies 45(6): 818–828.
  • Baillie, L. (2008). "Mixed-sex wards and patient dignity: nurses' and patients' perspectives." British Journal of Nursing (BJN) 17(19): 1220–1225.
  • Baillie, L. (2009). "Patient dignity in an acute hospital setting: a case study." International Journal of Nursing Studies 46(1): 23–36.
  • Biggs, S., C.McCreadie, J.Manthorpe, A.Tinker, A.Hills, M.Doyle, & R.Erens. (2007). "UK Study of Abuse and Neglect of Older People: Prevalence survey report." National Centre for Social Research, London.
  • Billings, J. A. (2008). "Dignity." Journal of Palliative Medicine 11(2): 138–9.
  • Boyle, G. (2008). "Autonomy in long-term care: a need, a right or a luxury?" Disability & Society 23(4): 299–310.
  • British Geriatrics Society, Royal College of Physicians et al. (2009). "Advance care planning National guideline No.12 in the Concise Guidance to Good Practice Series."
  • Calnan, M., D. Badcott et al. (2006). "Dignity under threat? A study of the experiences of older people in the United Kingdom." International Journal of Health Services 36(2): 355-75.
  • Care, N. C. f. P. and N. E. o. L. C. Programme (2007). Building on firm foundations : improving end of life care in care homes : examples of innovative practice.
  • Chochinov, H. (2007). "Dignity and the essence of medicine - the A, B, C, and D of dignity conserving care." British Medical Journal 335(7612): pp 184–187.
  • Chochinov, H. M. (2006). "Dying, dignity, and new horizons in palliative end of life care." CA: a Cancer Journal for Clinicians 56(2): 84–103.
  • Chochinov, H. M., T. Hassard et al. (2008). "The patient dignity inventory: a novel way of measuring dignity-related distress in palliative care." Journal of Pain & Symptom Management 36(6): 559-71.
  • Chochinov, H. M., L. J. Krisjanson et al. (2006). "Dignity in the terminally ill: revisited." Journal of Palliative Medicine 9(3): 666-72.
  • Clark, A. (2009). "Ageism and age discrimination in social care in the United Kingdom. A review from the literature." Centre for Policy on Ageing.
  • Cooper, C., A. Selwood, M. Blanchard, Z. Walker, R. Blizard, and G. Livingston. (2009). "Abuse of people with dementia by family carers: representative cross sectional survey." BMJ (338): 155.
  • Coventry, M. L. (2006). "Care with dignity: a concept analysis." Journal of Gerontological Nursing 32(5): 42–8.
  • Duncan, C. (2008). "The dangers and limitations of equality agendas as means for tackling old-age prejudice." Ageing and Society, 28(8), November 2008, pp.1133–1158.
  • Dwyer, L. L., L. Nordenfelt et al. (2008). "Three nursing home residents speak about meaning at the end of life." Nursing Ethics 15(1): 97–109.
  • Franklin, L. L., B. M. Ternestedt et al. (2006). "Views on dignity of elderly nursing home residents." Nursing Ethics 13(2): 130–46.
  • Gallagher, A., S. Li et al. (2008). "Dignity in the care of older people - a review of the theoretical and empirical literature." BMC Nursing 7: p12.
  • Giordano, J. (2006). "Hospice, palliative care, and pain medicine: meeting the obligations of non-abandonment and preserving the personal dignity of terminally III patients." Delaware Medical Journal 78(11): 419–22.
  • Gruenewald, D. A. and E. J. White (2006). "The illness experience of older adults near the end of life: a systematic review." Anesthesiology Clinics 24(1): 163–80.
  • Haak, N. (2009). "Maintaining privacy and dignity of patients admitted to a district general hospital NHS trust." Developing Practice Improving Care 5(2): 1–4.
  • Hall, S., H. Chochinov et al. (2009). "A Phase II randomised controlled trial assessing the feasibility, acceptability and potential effectiveness of dignity therapy for older people in care homes: study protocol." BMC Geriatrics 9: 9.
  • Hamilton, M. and Z. Essat (2008). "Minority ethnic users experiences and expectations of nursing care." Journal of Research in Nursing 13(2): 102–110.
  • Harrefors, C., S. Savenstedt et al. (2009). "Elderly people's perceptions of how they want to be cared for: an interview study with healthy elderly couples in Northern Sweden." Scandinavian Journal ofCaring Sciences 23(2): 353.
  • Healthcare Commission. (2007). Caring for dignity: a national report on dignity in care for older people while in hospital.
  • Higgins, P. and T. Altilio (2007). "Palliative sedation: an essential place for clinical excellence." Journal of Social Work in End-of-Life and Palliative Care 3(4): 3–30.
  • Hirai, K., M. Miyashita et al. (2006). "Good death in Japanese cancer care: a qualitative study." Journal of Pain & Symptom Management 31(2): 140–7.
  • Holmerova, I., B. Juraskova et al. (2007). "Dignity and palliative care in dementia." Journal of Nutrition, Health & Aging 11(6): 489–94.
  • Iliffe, S., J. Wilcock et al. (2008). "Can clinicians benefit from patient satisfaction surveys? Evaluating the NSF for Older People, 2005-2006... National Service Framework." Journal of the Royal Society of Medicine 101(12): 598–604.
  • Inspection, C. f. S. C. (2008). "Safeguarding adults. A study of the effectiveness of arrangements to safeguard adults from abuse."
  • Jacobson, N. (2007). "Dignity and health: a review." Social Science and Medicine, 2(64), January 2007, pp 292–302.
  • Kerr, D., Wilkinson, H., & Cunningham, C. (2008). Supporting older people in care homes at night, Joseph Rowntree Foundation.
  • Kumar, A. and N. Allcock (2008). Pain in older people: reflections and experiences from an older person's perspective, Help the Aged.
  • Macklin, R. (2003). ""Dignity is a useless concept"." BMJ (December 20): 1419–1420.
  • Magee, H., S. Parsons et al. (2008). Measuring dignity in care for older people, Help the Aged.
  • Mangset, M., T. E. Dahl et al. (2008). " 'We're just sick people, nothing else': ... factors contributing to elderly stroke patients' satisfaction with rehabilitation." Clinical Rehabilitation 22(9): 825–835.
  • Matiti, M. R. and G. M. Trorey (2008). "Patients' expectations of the maintenance of their dignity." Journal of Clinical Nursing 17(20): 2709–2717.
  • Matthews, L., S. Sceats, et al. (2008). "The Human Rights Act - changing lives." p 27.
  • McClement, S., H. M. Chochinov et al. (2007). "Dignity therapy: family member perspectives." Journal of Palliative Medicine 10(5): 1076-82.
  • McPherson, C. J., K. G. Wilson, et al. (2007). "Feeling like a burden to others: a systematic review focusing on the end of life." Palliative Medicine 21(2): 115–28.
  • Melin-Johansson, C., B. Axelsson, et al. (2007). "Caregivers' perceptions about terminally ill family members' quality of life." European Journal of Cancer Care 16(4): 338–45.
  • Nolan, M., J. Brown, S. Davies, J. Nolan, J. Keady. (2006). "The Senses Framework: improving care for older people through a relationship-centred approach." Getting Research into Practice Series, University of Sheffield.
  • Ostgathe, C., J. Gaertner, et al. (2008). "Cognitive failure in end of life." Current Opinion in Supportive & Palliative Care 2(3): 187–91.
  • Owen, T., & Meyer, J. (2009). Minimising the use of 'restraint' in care homes: Challenges, dilemmas and positive approaches., SCIE.
  • Pérez-Cárceles, M. D., M. D. Lorenzo, et al. (2007). "Elderly patients also have rights." Journal of Medical Ethics 33(12): 712–716. Philp, I. (2006). "A new ambition for old age - next steps in implementing the National Service Framework for Older People; a report from
  • Professor Ian Philp, Director for Older People, Department of Health." pp 24 (Ref 274287).
  • Philp, I. and M. Richards (2006). NHS End of Life Care Programme: progress report: March 2006. Leicester, NHS end of Life Care Programme: p 26.
  • Physicians, R. C. and B. S. o. Gastroenterology (2010). Oral feeding difficulties and dilemmas: A guide to practical care, particularly towards the end of life. London, Royal College Physicians.
  • Physicians, R. C. o. (2007). Assessment of pain in older people. National guidelines. Concise guidance to good practice.
  • Picker, I. (2008). On our own terms: the challenge of assessing dignity in care. Help the Aged.
  • Pleschberger, S. (2007). "Dignity and the challenge of dying in nursing homes: the residents' view." Age & Ageing 36(2): 197–202.
  • Porock, D., K. Pollock, et al. (2009). "Dying in public : the nature of dying in an acute hospital setting." pp 10–28.
  • Qureshi, H. (2009). Restraint in care homes for older people: a review of selected literature, SCIE.
  • Råholm, M-B. (2008). "Uncovering the ethics of suffering using a narrative approach." Nursing Ethics 15(1): 62–72.
  • Read, S., & Morris, H. (2008). Living and dying with dignity., Mencap.
  • Roger, K. S. (2006). "A literature review of palliative care, end of life, and dementia." Palliative & Supportive Care 4(3): 295–303.
  • Schofield, P. and D. Reid (2006). "The assessment and management of pain in older people: a systematic review of the literature". International Journal on Disability and Human Development 5(1): 9–15.
  • Seymour, J., Froggatt, K., & Kumar, A (2008). End of life care in care homes: Understanding and mapping innovative solutions, the University of Nottingham & the University of Lancaster.
  • Skorpen, A., N. Anderssen, et al. (2008). "The smoking-room as psychiatric patients' sanctuary: a place for resistance." Journal of Psychiatric & Mental Health Nursing 15(9): 728–736.
  • Thompson, G. N. and H. M. Chochinov (2008). "Dignity-based approaches in the care of terminally ill patients." Current Opinion in Supportive & Palliative Care 2(1): 49–53.
  • Volicer, L. (2007). "Goals of care in advanced dementia: quality of life, dignity and comfort." Journal of Nutrition, Health & Aging 11(6): Nov-Dec.
  • Wainwright, R. O. B., D. (2009). An overview of the UK domiciliary care sector, United Kingdom Homecare Association.
  • Webster, C. and K. Bryan (2009). "Older people's views of dignity and how it can be promoted in a hospital environment." Journal of Clinical Nursing 18(12): 1784–1792.
  • Webster, J., E. Coats, et al. (2009). "Enabling dignity in care through practice development with older people." Practice Development in Health Care 8(1): 5–17.
  • Woolhead, G., W. Tadd, et al. (2006). " "Tu" or "Vous?" A European qualitative study of dignity and communication with older people in health and social care settings." Patient Education & Counseling 61(3): 363–71.
  • Zwakhalen, S. M. G., J. P. H. Hamers, et al. (2006). "Pain in elderly people with severe dementia: A systematic review of behavioural pain assessment tools".BioMed Central Geriatrics 6: 3 6(3).
  • Care, N. C. f. P. and N. E. o. L. C. Programme (2007). Building on firm foundations: improving end of life care in care homes: examples of innovative practice.
  • Chochinov, H. M. (2006). "Dying, dignity, and new horizons in palliative end of life care." CA: a Cancer Journal for Clinicians 56(2): 84–103.
  • Giordano, J. (2006). "Hospice, palliative care, and pain medicine: meeting the obligations of non-abandonment and preserving the personal dignity of terminally ill patients." Delaware Medical Journal 78(11): 419–22.
  • Inspection, C. f. S. C. (2008). "Safeguarding adults. A study of the effectiveness of arrangements to safeguard adults from abuse."
  • Physicians, R. C. and B. S. o. Gastroenterology (2010). Oral feeding difficulties and dilemmas: A guide to practical care, particularly towards the end of life.
  • Thompson, G. N. and H. M. Chochinov (2008). "Dignity-based approaches in the care of terminally ill patients." Current Opinion in Supportive & Palliative Care 2(1): 49–53.