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Health-related expectations of the chronically critically ill: a multi-perspective qualitative study
- Source :
- BMC Palliative Care, Vol 20, Iss 1, Pp 1-12 (2021), BMC Palliative Care
- Publication Year :
- 2021
- Publisher :
- Springer Science and Business Media LLC, 2021.
-
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.
- Subjects :
- Male
Palliative care
Psychological intervention
Chronic illness
Residential Facilities
0302 clinical medicine
030212 general & internal medicine
Chronic critical illness
Qualitative Research
Resuscitation Orders
Terminal Care
Respiration
lcsh:RC952-1245
General Medicine
Middle Aged
Health services
Hospitalization
030220 oncology & carcinogenesis
Female
Descriptive research
Advance Directives
Qualitative
Psychology
Attitude to Health
Psychosocial
psychological phenomena and processes
Research Article
Adult
Quality of life
Canada
animal structures
Attitude of Health Personnel
Pain medicine
Decision Making
lcsh:Special situations and conditions
Hope
Young Adult
03 medical and health sciences
Quality of life (healthcare)
Long term mechanical ventilation
Nursing
Humans
Family
Motivation
Critically ill
Long-Term Care
Respiration, Artificial
nervous system diseases
Chronic Disease
Critical illness
Qualitative research
Subjects
Details
- ISSN :
- 1472684X
- Volume :
- 20
- Database :
- OpenAIRE
- Journal :
- BMC Palliative Care
- Accession number :
- edsair.doi.dedup.....c1fd42a3e35b92c21e3ed640e793bad3