Abstract
BackgroundThose 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.MethodsIn 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.ResultsThere 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.ConclusionsThe 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.
Highlights
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
A total of 38 individuals participated in this research; 6 CCI residents, 11 family members, and 21 healthcare providers (HCPs)
Residents and family members represented a total of CCI individuals who resided in the facility (2 residents completed an interview independently, 4 residents completed a dyad interview with a family member, and 7 family members completed an interview independently)
Summary
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. It is unclear how CCI individuals and their family understand their health and the importance of prognostic information following hospitalization. There is an emerging population of patients who survive their critical illness owing to treatment advances in the intensive care unit (ICU), but who do not fully recover and instead progress to persistent dependence on lifesustaining treatment. In the United States, chronically critically ill (CCI) individuals are often cared for in facilities termed long-term acute care hospitals, which are among the fastest growing segments of the healthcare system [7]. In Canada, where long-term acute care hospitals do not exist, the CCI are increasingly discharged to long-term care facilities capable of providing ventilator care
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