Novel Definitions of Wellness and Distress among Family Caregivers of Patients with Acute Cardiorespiratory Failure: A Qualitative Study.

RATIONALE:Family caregivers of patients with acute cardiorespiratory failure are at high risk for distress, typically defined as the presence of psychological symptoms such as anxiety, depression, or post-traumatic stress. Interventions to reduce caregiver distress and increase wellness have been largely ineffective to date. An incomplete understanding of caregiver wellness and distress may hinder efforts at developing effective support interventions. OBJECTIVES:To allow family caregivers to define their experiences of wellness and distress six months after patient intensive care unit (ICU) admission, and to identify moderators that influence wellness and distress. METHODS:Primary family caregivers of adult patients admitted to the medical ICU with acute cardiorespiratory failure were invited to participate in a semi-structured interview six months after ICU admission as part of a larger prospective cohort study. Interview guides were used to assess caregiver perceptions of their own well-being, describe their experiences of family caregiving, and identify key stress events and moderators that influenced well-being during and after the ICU admission. This study was guided by the Chronic Traumatic Stress Conceptual Model and data were analyzed using the five-step framework approach. RESULTS:Among 21 interviewees, the mean age was 58 years, 67% were female and 76% were white. Nearly half (47%) of patients had died before the caregiver interview. At the time of the interview, 9 caregivers endorsed an overall sense of distress, 10 endorsed a sense of wellness, and 2 endorsed a mix of both. Caregivers defined their experiences of wellness and distress as multidimensional and comprised of four main elements: 1) positive vs. negative physical and psychological outcomes, 2) high vs. low capacity for self-care, 3) thriving vs. struggling in the caregiving role, and 4) a sense of normalcy vs. ongoing life disruption. Post-discharge support from family, friends, and the community at large played a key role in moderating caregiver outcomes. CONCLUSION:Caregiver wellness and distress are multidimensional and extend beyond the absence or presence of psychological outcomes. Future intervention research should incorporate novel outcomes measures incorporating elements of self-efficacy, preparedness, and adaptation, and optimize post-discharge support for family caregivers.