Elsevier

Nursing Outlook

Volume 60, Issue 6, November–December 2012, Pages 351-356.e20
Nursing Outlook

Palliative care and end of life: The caregiver

https://doi.org/10.1016/j.outlook.2012.08.003Get rights and content

Abstract

Informal caregivers are a key component of end-of-life/palliative care and are increasingly recognized as recipients of care. Numerous factors affect the care they give and they have significant care needs themselves. The purpose of this survey was to identify key research questions, priorities, and next steps for research on caregivers and palliative care. A literature search of publications between 2006 and 2011 was conducted, yielding 109 studies that were evaluated on type, quality, topic, and other factors. An interdisciplinary group of healthcare professionals examined results and recommended research priorities. Existing research is primarily descriptive in nature, with few interventions to guide practice. Future research priorities include factors influencing caregivers and roles, information and support needs, caregiver health, end-of-life issues, healthcare disparities, and delivery and costs of care. Conclusions include that expanding the science will contribute to improving caregiver performance and health.

Section snippets

Method

The focus of the NINR Summit was on scientific literature published in the five years prior to the conference. Thus, a comprehensive search of literature published in English was undertaken to identify articles on caregivers and palliative care between January 2006 and June 2011. The literature presented here served as a foundation for a breakout session whose charge was to consider the progress made in the care-giving literature up to the time of the Summit in August 2011. Thus, whereas more

Qualitative Research

There were 43 studies using a qualitative method (Table 2 online). Of these, the design was not specified in 30 articles and appeared to consist of interviews and qualitative analysis of existing data, generally using content analysis approaches. Where a design was specified, the approach used was phenomenology in five studies, ethnography in four studies, focus groups in three, grounded theory in one, and “other” in another study. The studies were done in nine different countries with

Discussion

In this section, the recommendations from participants in the breakout session are presented. General implications for future research are discussed, followed by specific areas of inquiry recommended based on participants’ appraisal of the current state of the science, gaps in the science, and their collective background, knowledge, skills, and clinical experience. Again, it is important to note that these recommendations are based on literature reviewed in the five years prior to the NINR

Conclusions

The literature that was reviewed in this project was limited by virtue of the 2006–2011 timeframe specified for the breakout session, by the lack of specific disease-related search terms, and by presumed non-use of the term “palliative care” in much of the disease-specific literature. For example, there is a sizable body of literature on family caregivers in the context of cancer, much of which likely involves “palliative care,” but because this literature does not use the key words of

References

Available in the online version of this article at the Nursing Outlook Website: www.nursingoutlook.org.

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