Skip to content Skip to navigation
University of Warwick
  • Study
  • |
  • Research
  • |
  • Business
  • |
  • Alumni
  • |
  • News
  • |
  • About

University of Warwick
Publications service & WRAP

Highlight your research

  • WRAP
    • Home
    • Search WRAP
    • Browse by Warwick Author
    • Browse WRAP by Year
    • Browse WRAP by Subject
    • Browse WRAP by Department
    • Browse WRAP by Funder
    • Browse Theses by Department
  • Publications Service
    • Home
    • Search Publications Service
    • Browse by Warwick Author
    • Browse Publications service by Year
    • Browse Publications service by Subject
    • Browse Publications service by Department
    • Browse Publications service by Funder
  • Statistics
  • Help & Advice
University of Warwick

The Library

  • Login

Knowledge and information needs of informal caregivers in palliative care : a qualitative systematic review

Tools
- Tools
+ Tools

Docherty, Andrea, Owens, Alastair, Asadi-Lari, Mohsen, Petchey, Roland, Williams, Jacky and Carter, Yvonne, 1959-2009. (2008) Knowledge and information needs of informal caregivers in palliative care : a qualitative systematic review. Palliative Medicine, Vol.22 (No.2). p. 153. ISSN 0269-2163

[img]
Preview
PDF
WRAP_Williams_0675348-200208-pmj-070853431.pdf - Requires a PDF viewer such as GSview, Xpdf or Adobe Acrobat Reader

Download (190Kb)
Official URL: http://dx.doi.org/10.1177/0269216307085343

Abstract

Objectives: To review current understanding of the knowledge and information needs of informal caregivers in palliative settings. Data sources: Seven electronic databases were searched for the period January 1994–November 2006: Medline, CINAHL, PsychINFO, Embase, Ovid, Zetoc and Pubmed using a meta-search engine (Metalib®). Key journals and reference lists of selected papers were hand searched. Review methods: Included studies were peer-reviewed journal articles presenting original research. Given a variety of approaches to palliative care research, a validated systematic review methodology for assessing disparate evidence was used in order to assign scores to different aspects of each study (introduction and aims, method and data, sampling, data analysis, ethics and bias, findings/results, transferability/generalizability, implications and usefulness). Analysis was assisted by abstraction of key details of study into a table. Results: Thirty-four studies were included from eight different countries. The evidence was strongest in relation to pain management, where inadequacies in caregiver knowledge and the importance of education were emphasized. The significance of effective communication and information sharing between patient, caregiver and service provider was also emphasized. The evidence for other caregiver knowledge and information needs, for example in relation to welfare and social support was weaker. There was limited literature on non-cancer conditions and the care-giving information needs of black and minority ethnic populations. Overall, the evidence base was predominantly descriptive and dominated by small-scale studies, limiting generalizability. Conclusions: As palliative care shifts into patients’ homes, a more rigorously researched evidence base devoted to understanding caregivers knowledge and information needs is required. Research design needs to move beyond the current focus on dyads to incorporate the complex, three-way interactions between patients, service providers and caregivers in end-of-life care settings

Item Type: Journal Article
Subjects: R Medicine > R Medicine (General)
Divisions: Faculty of Medicine > Warwick Medical School
Library of Congress Subject Headings (LCSH): Palliative treatment, Caregivers -- Services for
Journal or Publication Title: Palliative Medicine
Publisher: Sage
ISSN: 0269-2163
Date: 2008
Volume: Vol.22
Number: No.2
Page Range: p. 153
Identification Number: 10.1177/0269216307085343
Status: Peer Reviewed
Access rights to Published version: Open Access
Description: Pre-print (also known as author final version).
References: 1 Marie Curie Cancer Care. Marie Curie Cancer Care Launches ‘Supporting the Choice to Die at Home’ campaign, 2004. http://www.mariecurie.org.uk/aboutus/news/ news_archive/news_archive_2004/marie_curie_cancer_ care+launches_supporting_the_choice_to_die_at_home_ campaign.htm (site accessed 8 June 2007). 2 BMJ. ‘What is your idea of a good death? Results of an on-line survey’, 2003. http://bmj.bmjjournals.com/misc/ good_death.shtml (site accessed 9 May 2005) 3 Higginson, IJ, Sen-Gupta, GJA. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med 2000; 3: 287–300. 4 Ellershaw, J, Ward, C. Care of the dying patient: the last hours or days of life. BMJ 2003; 326: 30–34. 5 House of Commons; Health Committee. Palliative Care. Fourth Report of Session 2003-04. London: House of Commons, 2004. 6 Higginson, IJ, Finlay, IG, Goodwin, DM, et al. Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers? J Pain Symptom Manage 2003; 25: 150–168. 7 Taylor, D, Carter, S. Valuing Choice-Dying at Home: A Case for the More Equitable Provision of High Quality Support for People who Wish to Die at Home. An Economic and Social Policy Opinion Commissioned by Marie Curie Cancer Care. London: Marie Curie Cancer Care, 2004. 8 Gomes, B, Higginson, IJ. Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ 2006; 332: 515–518. 9 Harding, R, Higginson, IJ. What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliat Med 2003; 17: 63–74. 10 Hudson, P. A critical review of supportive interventions for family caregivers of patients with palliative-stage cancer. J Psychosocial Oncology 2003; 22: 77–92. 11 Hughes, PM, Ingleton, MC, Noble, B, Clark, D. Providing cancer and palliative care in rural areas: a review of patient and caregiver needs. J Palliat Care 2004; 20: 44– 49. 12 Hawker, S, Payne, S, Kerr, C, Hardey, M, Powell, J. Appraising the evidence: reviewing disparate data systematically. Qual Health Res 2002; 12: 1284–1299. 13 Aldred, H, Gott, M, Gariballa, S. Advanced heart failure: impact on older patients and informal carers. Journal of Advanced Nursing 2005; 49: 116–124. 14 Aranda, S, Yates, P, Edwards, H, Nash, R, Skerman, H, McCarthy, A. Barriers to effective cancer pain management: a survey of Australian family caregivers. Eur J Cancer Care (Engl) 2004; 13: 336–343. 15 Beach, DL. Caregiver discourse: perceptions of illnessrelated dialogue. Hosp J 1995; 10: 13–25. 16 Berry, P-E, Ward, S-E. Barriers to pain management in hospice: a study of family caregivers. Hosp J 1995; 10: 19. 17 Cameron, JI, Shin, JL, Williams, D, Stewart, DE. A brief problem-solving intervention for family caregivers to individuals with advanced cancer. J Psychosom Res 2004; 57: 137–143. 18 Caron, C, Griffith, D, Arcand, M. Decision making at the end of life in dementia: how family caregivers perceive their interactions with health care providers in long term care settings. Journal of Applied Gerontology 2005; 24: 231–247. 19 Clayton, J, Butow, P, Tattersal, M. The needs of terminally ill cancer patients versus those of caregivers for information regarding prognosis and end of life issues. Cancer 2005; 103: 1957–1964. 20 Exley, C, Field, D, Jones, L, Stokes, T. Palliative care in the community for cancer and end-stage cardiorespiratory disease: the views of patients, lay-caregivers and health care professionals. Palliat Med 2005; 19: 76–83. 21 Field, D, Douglas, C, Jagger, C, Dand, P. Terminal illness: views of patients and their lay caregivers. Palliat Med 1995; 9: 45–54. 22 Fine, PG, Busch, MA. Characterization of breakthrough pain by hospice patients and their caregivers. J Pain Symptom Manage 1998; 16: 179–183. 23 Fukui, S. Information needs and the related variables of Japanese family caregivers of terminally ill cancer patients. Nurs Health Sci 2004; 6: 29–36. 24 Gagnon, P, Charbonneau, C, Allard, P, Soulard, C, Dumont, S, Fillion, L. Delirium in advanced cancer: a psychoeducational intervention for family caregivers. J Palliat Care 2002; 18: 253–261. 25 Harding, R, Higginson, IJ, Leam, C, et al. Evaluation of a short-term group intervention for informal caregivers of patients attending a home palliative care service. J Pain Symptom Manage 2004; 27: 396–408. 26 Harrington, V, Lackey, NR, Gates, MF. Needs of caregivers of clinic and hospice cancer patients. Cancer Nurs 1996; 19: 118–125. 27 Hauser, J, Chih-Hung, C, Alpert, H, Baldwin, D, Emanuel, E, Emanuel, L. Who’s caring for whom? Differing perspectives between seriously ill patients and their family caregivers. Am J Hospice Palliat Med 2006; 23: 105–112. 28 Hudson, P, Aranda, S, McMurray, N. Intervention development for enhanced lay palliative caregiver support – the use of focus groups. Eur J Cancer Care (Engl) 2002; 11: 262–270. 29 Jansma, FF, Schure, LM, de Jong, BM. Support requirements for caregivers of patients with palliative cancer. Patient Educ Couns 2005; 58: 182–126. 30 Kasanowski, M. Commitment to the end: family caregivers medication management of symptoms in patients with cancer near death. Dissertation, Boston, MA, 1998. 31 Keefe, F, Ahles, T, Sulton, L, et al. Partner guided cancer pain management at the end of life: a preliminary study. J Pain Symptom Manage 2005; 29: 263–272. 32 Kessler, D, Peters, T, Lee, L, Parr, S. Social class and access to specialist palliative care services. Palliat Med 2005; 19: 105–110. 33 Koffman, J, Higginson, IJ. Accounts of caregivers’ satisfaction with health care at the end of life: a comparison of first generation black Caribbeans and white patients with advanced disease. Palliat Med 2001; 15: 337–345. 34 Lecouturier, J, Jacoby, A, Bradshaw, C, Lovel, T, Eccles, M. Lay caregivers’ satisfaction with community palliative care: results of a postal survey. South Tyneside MAAG Palliative Care Study Group. Palliat Med 1999; 13: 275–283. 35 Lin, CC. Barriers to the analgesic management of cancer pain: a comparison of attitudes of Taiwanese patients and their family caregivers. Pain 2000; 88: 7–14. 36 Lin, CC, Lai, YL, Lo, EC. Life-extending therapies among patients with advanced cancer: patients’ levels of pain and family caregivers’ concerns about pain relief. Cancer Nurs 2001; 24: 430–435. 37 Lin, CC, Wang, P, Lai, YL, Lin, CL, Tsai, SL, Chen, TT. Identifying attitudinal barriers to family management of cancer pain in palliative care in Taiwan. Palliat Med 2000; 14: 463–470. 38 Lin, WC, Tsao, CJ. Information needs of family caregivers of terminal cancer patients in Taiwan. Am J Hosp Palliat Care 2004; 21: 438–444. 39 Lobchuk, MM, Vorauer, JD. Family caregiver perspective-taking and accuracy in estimating cancer patient symptom experiences. Soc Sci Med 2003; 57: 2379–2384. 40 Mazanec, P, Bartel, J. Family caregiver perspectives of pain management. Cancer Pract 2002; 10 Suppl 1: S66– S69. 41 Milberg, A, Strang, P, Carlsson, M, Borjesson, S. Advanced palliative home care: next-of-kin’s perspective. J Palliat Med 2003; 6: 749–756. 42 Seamark, DA, Williams, S, Hall, M, Lawrence, CJ, Gilbert, J. Dying from cancer in community hospitals or a hospice: closest lay caregivers’ perceptions. Br J Gen Pract 1998; 48: 1317–1321. 43 Spruyt, O. Community-based palliative care for Bangladeshi patients in east London. Accounts of bereaved caregivers. Palliat Med 1999; 13: 119–129. 44 Terry, W, Olson, L, Wilss, L, Boulton-Lewis, G. Experience of dying: concerns of dying patients and of carers. Intern Med J 2006; 36: 338–346. 45 Waldrop, D, Kramer, B, Skretny, JA, Milch, RA, Finn, W. Final transitions: family caregiving at the end of life. J Palliat Med 2005; 8: 623–638. 46 Ward, SE, Berry, PE, Misiewicz, H. Concerns about analgesics among patients and family caregivers in a hospice setting. Res Nurs Health 1996; 19: 205–211. 47 Grande, GE, Todd, CJ. Why are trials in palliative care so difficult? Palliat Med 2000; 14: 69–74. 48 Higginson, IJ. It would be NICE to have more evidence? Palliat Med 2004; 18: 85–86. 49 Mays, N, Pope, C. Qualitative research in health care: assessing quality in qualitative research. BMJ 2000; 320: 50–52. 50 Faull, C. The context and principles of palliative care. In Faull, C, Carter, Y, Daniels, G, The Handbook of Palliative Care. Oxford: Blackwell, 2005: 1–20. 51 Murray, SA, Kendall, M, Boyd, K, Sheikh, A. Illness trajectories in palliative care. BMJ 2005; 330: 1007–1011.
URI: http://wrap.warwick.ac.uk/id/eprint/222

Request changes to a record

Actions (login required)

View Item View Item

Document Downloads

More statistics for this item...
twitter

Email us: publications@warwick.ac.uk
Contact Details
About Us