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 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. Palliative Medicine (2008); xxx: 1-19

Knowledge and Attitudes toward Palliative Terminal Cancer Care among Thai Generalists

“…Data also suggest that most people with advanced illnesses prefer to be cared for and death at home or near their home (Tang, 2003;Gomes and Higginson, 2006). Yet, most people die in institutions or if at home, without the appropriate level of care needed to meet their basic needs (Kikule, 2003, Docherty et al, 2008. Most "end of life care" occurs in a generalist setting rather than a specialist palliative care setting (Shugarman et al, 2005).…”

Hospice utilization of Medicare beneficiaries in Hawai‘i compared to other states

“…As a result, there are increased demands placed on the caregivers. As palliative care is shifting from the hospital to the community and the home, there is a need for more research focused on understanding informal family caregivers' knowledge and information needs (Docherty et al, 2008). Providing cross-cultural and culturally appropriate information on hospice and end-of-life care will help health professionals enrich communication and provide anticipatory guidance and preparedness for Hawai'i's family caregivers regarding end-of-life care (Hebert, Dang, & Schulz, 2006).…”

Client, caregiver, and provider perspectives of safety in palliative home care: a mixed method design

“…Caregivers were vulnerable and often overextended by the time palliative home care services were offered or engaged, or became so as the burden of care increased and the caregiving period lengthened. Caregivers have previously reported inadequate knowledge [41] particularly related to pain management, navigating an uncoordinated home care system, no hands-on learning, and not knowing what to expect as an illness progresses [42]. This lack of knowledge may well be a contributing factor to the feelings of powerlessness and helplessness that caregivers described when providing palliative care [43] or the feeling of loss of control [44,45].…”