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BMC Palliative Care
Published in: BMC Palliative Care 1/2021

01-12-2021 | Care | Research article

Health-related expectations of the chronically critically ill: a multi-perspective qualitative study

Authors: A. Fuchsia Howard, Sarah Crowe, Laura Choroszewski, Joe Kovatch, Adrianne Jansen Haynes, Joan Ford, Scott Beck, Gregory J. Haljan

Published in: BMC Palliative Care | Issue 1/2021

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Abstract

Background

Those who survive critical illness only to become chronically critically ill (CCI) experience a high symptom burden, repeat episodes of illness exacerbation, communication barriers, and poor health outcomes. Yet, it is unclear how CCI individuals and their family understand their health and the importance of prognostic information following hospitalization. The research purpose was to examine expectations about health and disease prognosis of CCI residents in long-term care from the perspectives of the CCI themselves and their family members, as well as to describe healthcare provider (HCP) interpretations of, and reactions to, these health-related expectations.

Methods

In this qualitative interpretive descriptive study, conducted in British Columbia, Canada, 38 semi-structured interviews were conducted (6 CCI residents, 11 family members, and 21 HCPs) and inductively analyzed using thematic and constant comparative techniques.

Results

There was divergence in CCI resident, family and HCP expectations about health and the importance of disease prognosis, which contributed to conflict. CCI residents and family viewed conflict with HCPs in relation to their day-to-day care needs, while HCPs viewed this as arising from the unrealistically high expectations of residents and family. The CCI residents and family focussed on the importance of maintaining hope, and the HCPs highlighted the complexity of end-of-life decisions in conjunction with the high expectations and hopes of family.

Conclusions

The emotional and ongoing process of formulating health-related expectations points to the need for future research to inform the development and/or adapting of existing communication, psychosocial and health services interventions to ease the burden experienced by those who are CCI.
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Metadata
Title
Health-related expectations of the chronically critically ill: a multi-perspective qualitative study
Authors
A. Fuchsia Howard
Sarah Crowe
Laura Choroszewski
Joe Kovatch
Adrianne Jansen Haynes
Joan Ford
Scott Beck
Gregory J. Haljan
Publication date
01-12-2021
Publisher
BioMed Central
Keyword
Care
Published in
BMC Palliative Care / Issue 1/2021
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-020-00696-w

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