Experiences of Relatives in ICU Caregiver Role: Narrative Exploration of Psychosocial Factors Underpinning Their Decision-Making.

Abstract

Background: Caring for a patient admitted to the intensive care unit (ICU) may cause significant stress, anxiety, and depression that undermine family members’ ability to participate in healthcare provision. Unfortunately, caregivers’ and family members’ experiences have not been studied well in the scholarly literature, so it is not clear what factors affect their effective involvement in decision-making and how they overcome stress. Therefore, this study aimed to understand psychosocial factors that underpin the decision-making experiences of family caregivers of critically ill patients in intensive care units. Methods: A structured narrative review was conducted using three databases; PubMed, Elsevier, and Willey Online. Key search terms used were: "((family decision) OR (decision-making)) AND (psychosocial factors) AND ((ICU) OR (intensive care units))", "(experiences of relatives) AND ((ICU) OR (intensive care units)) AND ((caregiver role) OR (significant others))", and "(decision-making role OR family decision) AND ((family members) OR (caregivers)) AND ((ICU) OR (intensive care units))". Duplicates were removed manually and all studies that did not meet the review criteria were removed. Results: Forty (40) studies conducted in different settings were included in this review. Caregivers often experienced communication problems and struggled with psychological effects resulting from stress, financial difficulties, and emotional burden of care. Anxiety, post-traumatic stress disorder (PTSD), frustration, helplessness, and burnout, affected caregivers’ decision making. Notably, social support networks, family support, and positive family functioning were found to improve caregivers’ well-being and help them remain resilient and engaged in care. Conclusion: Most studies reported psychological problems that affected caregivers’ participation in decision making on the care of their critically ill relatives. However, social support was not always enough to facilitate caregivers’ decision-making, so it is important to adopt innovative solutions such as a family systems theory, family-centred care, decision aids, and improved communication, among others, to make sure that caregivers are well-informed, supported, and empowered to make the best decisions for their loved ones. Given the lack of overall knowledge on psychological factors underpinning caregivers’ decision-making in ICUs, more research on this topic is strongly recommended.