Caregiver strain among relatives of out-of-hospital cardiac arrest survivors; the DANCAS relative survey.

BACKGROUND: Knowledge about caregiver strain among relatives of out-of-hospital cardiac arrest (OHCA) survivors is limited. Thus, the objectives were to i) describe differences in self-reported mental well-being, mental health, and caregiver strain at different time points (1-5 years) post-OHCA and ii) investigate characteristics associated with caregiver strain. METHODS: A national cross-sectional survey (DANCAS) from October 2020 to March 2021 with OHCA survivors and their closest relatives. The relative survey included the WHO-5 Well-being Index (WHO-5), the Hospital Anxiety and Depression Scale (HADS) and the Modified Caregiver Strain Index (M-CSI). Differences in scores between time groups were explored using descriptive statistics. Associations between characteristics and caregiver strain were investigated with multivariable logistic regression models, presented as odds ratios (OR) with 95% confidence intervals (CI), adjusted for gender, age, education status, relative affiliation, and time after OHCA. RESULTS: Of 561 relatives, 24% (n = 137) experienced caregiver strain, with no significant differences in the relatives' mental well-being, mental health, or caregiver strain with time since OHCA. In the adjusted analyses, older age (OR 0.98 95% CI 0.96;0.99) and several self-reported outcomes, including reduced mental well-being (WHO-5 OR 7.27 95% CI 4.86;11.52), symptoms of anxiety (HADS-A OR 6.01 95% CI 3.89;9.29) and depression (HADS-D OR 15.03 95% CI 7.33;30.80) were significantly associated with worse caregiver strain. CONCLUSION: Nearly one-quarter of relatives of OHCA survivors experience caregiver strain, with this proportion remaining unchanged with time. Several outcomes were associated with caregiver strain, emphasising the need to identify relatives at greater risk of burden following OHCA.

Caught between competing emotions and tensions while adjusting to a new everyday life: a focus group study with family caregivers of out-of-hospital cardiac arrest survivors.

AIMS: Caring for an out-of-hospital cardiac arrest (OHCA) survivor may impact family caregivers' lives due to the sudden onset of the illness and possible secondary cognitive, emotional, and physical challenges. However, experiences of caring for an OHCA survivor are sparsely described. Thus, this study aimed to explore how family caregivers of OHCA survivors experience the potential burden. METHODS AND RESULTS: Using an explorative qualitative approach, six focus group interviews were conducted with a sample of 25 family caregivers of OHCA survivors and analysed using a phenomenological hermeneutic approach inspired by the philosophy of Ricoeur. The OHCA survivors attended a rehabilitation course, and the family caregivers were interviewed as part of the course.Based on the analysis, three themes emerged: (i) feeling unexpectedly alone and invisible; the family caregivers experienced an emotional burden that could not be shared-leading to caregiving being a lonely experience, (ii) fear of loss; the fear of losing a loved one was a constant companion contributing to the burden, and (iii) adjusting to a new everyday life; the family caregivers had difficulties adjusting to living their lives on the premise of the survivors' needs. CONCLUSION: The findings of this study emphasize the burden experienced by family caregivers and how they can be trapped in competing emotions and tensions. The possible caregiver burden following OHCA should be acknowledged. Interventions to reduce the burden should be tested and implemented as part of the clinical care of OHCA survivors and their families.