When chronic critical illness is a family affair: A multi-perspective qualitative study of family involvement in long-term care.

OBJECTIVE: Those with chronic critical illness (CCI) remain dependent on life-sustaining treatments and increasingly reside in long-term care facilities equipped to meet their needs. The nature of family involvement in care remains undetermined thwarting approaches to mitigate poor family outcomes. The research objective was to explicate family involvement in the care of an individual with CCI who resides in long-term care. METHODS: In this qualitative research, we used thematic analysis and constant comparative techniques to analyze data from interviews with 38 participants: 11 family members, 6 residents with CCI, and 21 healthcare providers. RESULTS: Involvement in care entailed family: (1) reorienting their life despite the stress and emotional toll; (2) assuming responsibility for meaningful activities and management of practical matters, yet struggling alone; (3) advocating for care by being present, reminding and pushing, and picking their battles; and (4) figuring out how to contribute to nursing care, but with unclear expectations. DISCUSSION: The burden of family caregiving was substantial, contrasting the assumption that family are relieved of their caregiver responsibilities when the patient with CCI is in a care facility. Research to address unmet family needs specific to their roles and responsibilities could potentially improve family outcomes and is warranted.

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

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.

Sources of Distress for Residents With Chronic Critical Illness and Ventilator Dependence in Long-Term Care.

Limited understanding of the psychological challenges experienced by individuals with chronic critical illness hampers efforts to deliver quality care. We used an interpretive description approach to explore sources of distress for individuals with chronic critical illness in residential care, wherein we interviewed six residents, 11 family members, and 21 staff. Rather than discuss physical symptoms, sources of distress for residents were connected to feeling as though they were a patient receiving medical care as opposed to an individual living in their home. The tension between medical care and the unmet need for a sense of home was related to care beyond the physical being overlooked, being dependent on others but feeling neglected, frustration with limited choice and participation in decision making, and feeling sad and alone. Efforts to refine health care for individuals with chronic critical illness must foster a sense of home while ensuring individuals feel safe and supported to make decisions.