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Supportive Care in Heart Failure$
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James Beattie and Sarah Goodlin

Print publication date: 2008

Print ISBN-13: 9780198570288

Published to Oxford Scholarship Online: November 2011

DOI: 10.1093/acprof:oso/9780198570288.001.0001

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PRINTED FROM OXFORD SCHOLARSHIP ONLINE (oxford.universitypressscholarship.com). (c) Copyright Oxford University Press, 2020. All Rights Reserved. An individual user may print out a PDF of a single chapter of a monograph in OSO for personal use. date: 26 November 2020

Palliative Care Research in the Face of Uncertainty

Palliative Care Research in the Face of Uncertainty

(p.463) Chapter 26 Palliative Care Research in the Face of Uncertainty
Supportive Care in Heart Failure

Angie E. Rogers

Julia M. Addington-hall

Oxford University Press

This chapter first describes the ethics of researching in palliative care. It also summarizes some of the more common research methods and approaches used in end-of-life care research with reference, where possible, to work undertaken in heart failure (HF). Furthermore, it presents some of the more specific challenges of working with people with this condition. In particular, the challenges in sampling and recruitment, and retention and attrition in research at the end of life are reported. The research methods in end-of-life care include the retrospective method, and interviews and focus groups. Observational studies have played an important part in end-of-life care research and in developing the understanding of the experience of dying, particularly within institutional settings. Moreover, the challenges in palliative care research in heart failure include sampling and recruitment, prognostication, patient knowledge of chronic heart failure, co-morbidity, cognitive impairment and depression, breathlessness and weakness, and research workers. In general, the research literature amply illustrates that it is indeed possible to complete the type of studies that have the potential to impact on both the quality of life and the quality of care for these patients.

Keywords:   palliative care, heart failure, end-of-life care, ethics, researching, challenges

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