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

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Docherty, Andrea, Owens, Alastair, Asadi-Lari, Mohsen, Petchey, Roland, Williams, Jacky and Carter, Yvonne (2008) Knowledge and information needs of informal caregivers in palliative care : a qualitative systematic review. Palliative Medicine, Vol.22 (No.2). p. 153. doi:10.1177/0269216307085343

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Official URL: http://dx.doi.org/10.1177/0269216307085343

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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 Science, Engineering and Medicine > 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
Official Date: 2008
Dates:
DateEvent
2008UNSPECIFIED
Volume: Vol.22
Number: No.2
Page Range: p. 153
DOI: 10.1177/0269216307085343
Status: Peer Reviewed
Access rights to Published version: Open Access
Description:

Pre-print (also known as author final version).

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