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

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 the key details of each 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.

journal_name

Palliat Med

journal_title

Palliative medicine

authors

Docherty A,Owens A,Asadi-Lari M,Petchey R,Williams J,Carter YH

doi

10.1177/0269216307085343

subject

Has Abstract

pub_date

2008-03-01 00:00:00

pages

153-71

issue

eissn

0269-2163

issn

1477-030X

pii

22/2/153

journal_volume

pub_type

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