Theoretical understanding of the coping approaches and social support experiences of relatives of critically ill patients during the intensive care unit stay and the recovery period at home

Abstract: Relatives may experience a difficult and demanding situation when the patient is critically ill. During the period in the intensive care unit (ICU), the relatives may be subject to strong emotions of an existential nature, and the situation may involve several stressors as a result of changed roles, responsibilities and routines. These emotional stress experiences may result in weakened mental and physical functioning on the part of the relatives. During the patient’s rehabilitation at home the relatives are expected to provide care-giving assistance, which may lead to a further deterioration in their already weakened mental and physical functioning.The general aim of the thesis was to develop a theoretical understanding of coping approaches and social support experiences of relatives of critically ill patients, both in the ICU and at home. In order to gain an understanding of these areas it was deemed important to search for knowledge by means of qualitative methods, using grounded theory methodology, simultaneous concept analysis and qualitative content analysis. A total of 32 relatives of critical care patients participated in the studies.The findings of study I revealed that relatives of critically ill patients coped with their situation by alleviating, recycling, mastering or excluding their feelings during the ICU stay. The critical factors behind their choice of coping approach were their social circumstances, previous experiences of care and/or caring and how they apprehended the situation. In study II, during the patients’ recovery period at home, the relatives coped with their situation by accepting, volunteering, sacrificing or modulating. The critical factors in this period were the physical and psychological state of the relatives, previous experiences of care and/or caring and the psychological condition of the patient. A coping model was developed in study III, based on the coping concepts generated in studies I and II. In this model, the characteristics of each coping approach were systematised into different determinants in order to highlight the inherent process. The analysis of the relationship between the various coping approaches revealed differences in adaptation to the stressful situation. In terms of coping effectiveness, adaptation was associated with social support and health outcome. In the extended version of the coping model, with its dual perspective of the maladaptive-adaptive coping continuum and the weak-strong social support continuum, the degree of effectiveness of each coping approach was illustrated in relation to the others as well as to social support. In study IV and its Addition, a theoretical understanding of the phenomenon of what relatives experienced as supportive was developed. Support was perceived as empowerment by means of internal and external resources in the form of trusting oneself, encountering charity and encountering professionalism. The sense of empowerment permitted the relatives to experience their situation as safer and easier to control. The three support dimensions with their components and characteristics were illustrated in the empowerment model.These four studies have developed knowledge that may provide healthcare professionals with an understanding of the coping approaches and social support experiences of relatives during the critically ill patient’s ICU stay and recovery period at home. The association revealed between coping effectiveness, social support and health outcomes may draw attention to the relatives’ situation as well as to the possibility of enabling relatives to endure the patient’s entire illness and recovery period by enhancing the factors that promote effective coping. The three models may together form the basis for the development of a support programme for relatives of critically ill patients that encompasses the whole course of illness and recovery, which means that both institutional and community-based care would be involved.