A Fuchsia Howard1,2, Sarah Crowe3,4, Laura Choroszewski4, Joe Kovatch4, Adrianne Jansen Haynes5, Joan Ford5, Scott Beck3, Gregory J Haljan4,6. 1. School of Nursing, The University of British Columbia, T201 - 2211 Wesbrook Mall, Vancouver, BC, V6T 2B5, Canada. fuchsia.howard@ubc.ca. 2. Fraser Health Authority, Surrey, British Columbia, Canada. fuchsia.howard@ubc.ca. 3. School of Nursing, The University of British Columbia, T201 - 2211 Wesbrook Mall, Vancouver, BC, V6T 2B5, Canada. 4. Fraser Health Authority, Surrey, British Columbia, Canada. 5. Patient Partner, Vancouver, British Columbia, Canada. 6. Faculty of Medicine, The University of British Columbia, Vancouver, British Columbia, Canada.
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.
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.
Entities:
Keywords:
Chronic critical illness; Chronic illness; Critical illness; Health services; Long term mechanical ventilation; Palliative care; Qualitative; Quality of life; Respiration
Authors: Emily Damuth; Jessica A Mitchell; Jason L Bartock; Brian W Roberts; Stephen Trzeciak Journal: Lancet Respir Med Date: 2015-05-20 Impact factor: 30.700
Authors: Barbara J Daly; Sara L Douglas; Elizabeth O'Toole; James Rowbottom; Alan Hoffer; Amy R Lipson; Christopher Burant Journal: J Intensive Care Med Date: 2016-11-20 Impact factor: 3.510
Authors: Shannon S Carson; Jeremy M Kahn; Catherine L Hough; Eric J Seeley; Douglas B White; Ivor S Douglas; Christopher E Cox; Ellen Caldwell; Shrikant I Bangdiwala; Joanne M Garrett; Gordon D Rubenfeld Journal: Crit Care Med Date: 2012-04 Impact factor: 7.598
Authors: Judith E Nelson; Diane E Meier; Ann Litke; Dana A Natale; Robert E Siegel; R Sean Morrison Journal: Crit Care Med Date: 2004-07 Impact factor: 7.598
Authors: Suzanne M Burns; Sidenia Earven; Charles Fisher; Rose Lewis; Paul Merrell; Jane R Schubart; Jonathon D Truwit; Thomas P Bleck Journal: Crit Care Med Date: 2003-12 Impact factor: 7.598
Authors: Lakshmipathi Chelluri; Kyung Ah Im; Steven H Belle; Richard Schulz; Armando J Rotondi; Michael P Donahoe; Carl A Sirio; Aaron B Mendelsohn; Michael R Pinsky Journal: Crit Care Med Date: 2004-01 Impact factor: 7.598