title: Knowledge and information needs of informal caregivers in palliative care: a qualitative systematic review.
abstract: OBJECTIVE
  To review current understanding of the knowledge and information needs of informal caregivers in palliative settings.
  
  
  METHODS
  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.
  
  
  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.
authors: Worcestershire PCT.
authors: Andrea
authors: A
authors: Docherty
authors: Alastair
authors: A
authors: Owens
authors: Mohsen
authors: M
authors: Asadi-Lari
authors: Roland
authors: R
authors: Petchey
authors: Jacky
authors: J
authors: Williams
authors: Yvonne H
authors: YH
authors: Carter
mesh_terms: D032722:Advance Care Planning / Q000592:standards*; D017028:Caregivers / Q000523:psychology / Q000592:standards*; D003142:Communication; D007722:Health Knowledge, Attitudes, Practice; D006701:Home Nursing / Q000592:standards*; D006801:Humans; D015337:Multicenter Studies as Topic; D010166:Palliative Care / Q000592:standards*; D012107:Research Design / Q000592:standards