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

By Andrea Docherty, Alastair Owens, Mohsen Asadi-Lari, Roland Petchey, Jacky Williams and Yvonne Carter

Abstract

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

Topics: R1
Publisher: Sage
OAI identifier: oai:wrap.warwick.ac.uk:222

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  1. A brief problem-solving intervention for family caregivers to individuals with advanced cancer. doi
  2. (2003). A critical review of supportive interventions for family caregivers of patients with palliative-stage cancer. doi
  3. (2001). 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 doi
  4. (2003). Advanced palliative home care: next-of-kin’s perspective. doi
  5. (2005). Appraising the evidence: reviewing disparate data systematically. Qual Health Res 2002; 12: 1284–1299. Knowledge and information needs of informal caregivers in palliative care doi
  6. (2004). Barriers to effective cancer pain management: a survey of Australian family caregivers. Eur J Cancer Care (Engl) doi
  7. (1995). Barriers to pain management in hospice: a study of family caregivers.
  8. (2000). Barriers to the analgesic management of cancer pain: a comparison of attitudes of Taiwanese patients and their family caregivers. Pain doi
  9. (2003). Care of the dying patient: the last hours or days of life. BMJ doi
  10. (1995). Caregiver discourse: perceptions of illnessrelated dialogue.
  11. (1998). Characterization of breakthrough pain by hospice patients and their caregivers. doi
  12. (1998). Commitment to the end: family caregivers medication management of symptoms in patients with cancer near death. Dissertation,
  13. (1999). Community-based palliative care for Bangladeshi patients in east London. Accounts of bereaved caregivers. Palliat Med doi
  14. (1996). Concerns about analgesics among patients and family caregivers in a hospice setting. Res Nurs Health doi
  15. (2005). Decision making at the end of life in dementia: how family caregivers perceive their interactions with health care providers in long term care settings. doi
  16. (2002). Delirium in advanced cancer: a psychoeducational intervention for family caregivers. J Palliat Care
  17. (1998). Dying from cancer in community hospitals or a hospice: closest lay caregivers’ perceptions.
  18. (2004). Evaluation of a short-term group intervention for informal caregivers of patients attending a home palliative care service. doi
  19. (2006). Experience of dying: concerns of dying patients and of carers. doi
  20. (2006). Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ doi
  21. (2003). Family caregiver perspective-taking and accuracy in estimating cancer patient symptom experiences. Soc Sci Med doi
  22. Family caregiver perspectives of pain management. Cancer Pract 2002; 10 Suppl 1: S66– S69. doi
  23. (2005). Final transitions: family caregiving at the end of life. doi
  24. (2004). House of Commons; Health Committee. Palliative Care. Fourth Report of Session 2003-04. London: House of Commons,
  25. Identifying attitudinal barriers to family management of cancer pain in palliative care in Taiwan. Palliat Med doi
  26. Illness trajectories in palliative care. BMJ 2005; 330: 1007–1011. Knowledge and information needs of informal caregivers in palliative care 19 doi
  27. (2004). Information needs and the related variables of Japanese family caregivers of terminally ill cancer patients. Nurs Health Sci doi
  28. (2004). Information needs of family caregivers of terminal cancer patients in Taiwan. Am J Hosp Palliat Care
  29. (2002). Intervention development for enhanced lay palliative caregiver support – the use of focus groups. doi
  30. (2003). Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers? doi
  31. (2004). It would be NICE to have more evidence? Palliat Med doi
  32. (1999). Lay caregivers’ satisfaction with community palliative care: results of a postal survey. South Tyneside MAAG Palliative Care Study Group. Palliat Med doi
  33. (2001). Life-extending therapies among patients with advanced cancer: patients’ levels of pain and family caregivers’ concerns about pain relief. Cancer Nurs doi
  34. (2004). Marie Curie Cancer Care Launches ‘Supporting the Choice to Die at Home’ campaign, doi
  35. Needs of caregivers of clinic and hospice cancer patients. doi
  36. (2005). Palliative care in the community for cancer and end-stage cardiorespiratory disease: the views of patients, lay-caregivers and health care professionals. Palliat Med doi
  37. (2005). Partner guided cancer pain management at the end of life: a preliminary study. doi
  38. (2000). Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. doi
  39. (2004). Providing cancer and palliative care in rural areas: a review of patient and caregiver needs.
  40. (2000). Qualitative research in health care: assessing quality in qualitative research. BMJ doi
  41. Social class and access to specialist palliative care services. doi
  42. (2005). Support requirements for caregivers of patients with palliative cancer. Patient Educ Couns doi
  43. (1995). Terminal illness: views of patients and their lay caregivers. Palliat Med doi
  44. (2005). The context and principles of palliative care. In doi
  45. (2005). The needs of terminally ill cancer patients versus those of caregivers for information regarding prognosis and end of life issues. Cancer doi
  46. (2004). 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,
  47. (2003). What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliat Med doi
  48. (2003). What is your idea of a good death? Results of an on-line survey’,
  49. (2006). Who’s caring for whom? Differing perspectives between seriously ill patients and their family caregivers. Am J Hospice Palliat Med doi
  50. (2000). Why are trials in palliative care so difficult? Palliat Med doi

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