Treated in an intensive care unit : how patients and their families experience and manage their situation

Abstract: Background: Critical illness and treatment in an intensive care unit (ICU) is a traumatic event for patients and their families, which involves stress, anxiety, fear, worry and uncertainty. Survival and homecoming entail new challenges, and a significant proportion of patients and their families suffer from the long-term impact on their mental and/or physical health, termed post intensive care syndrome (PICS). In addition, patients can suffer from delusional memories, which are associated with discomfort and fear. Overall aim: The overall aim of the current thesis was to explore experiences and patterns of behaviours in critically ill patients and their family members, addressing the period from when the patient becomes critically ill until recovery/ everyday life at home. Methods: Four studies resulted in four papers. Data collection was performed with both quantitative and qualitative methods at five different ICUs in Sweden, consisting of university hospital, county hospital and district hospital. Study I was a prospective cohort study which aimed to describe and analyse factors associated with a health-related quality (HRQoL) of life 3, 6 and 12 months after discharge from a general surgical ICU. Included were 276 (62%) patients treated ≥ 96 hours in the ICU. For data collection, we used the Short Form Health Survey (SF-36). To analyse changes over time, a linear mixed model was used. To compare the results from the 12-months, with a gender and age matched reference of a Swedish population, a Wilcoxon Signed Rank Test was used. Furthermore, a linear regression analysis was performed to explore the impact of the background variables on HRQoL. In Study II, we used a classic grounded theory methodology to explore the main concerns of patients cared for in an ICU. Data were collected at three different general ICUs in Sweden. Thirteen interviews initiated, with one open-ended question and seven observations of other patients in the ICU were performed and analysed. The aim of Study III was to explore delusional memories, and how they were managed by COVID-19 patients treated in an ICU. Data were collected at one medical intensive care unit in Sweden, through sixteen interviews, with three open-ended questions and one additional question on how the patient experienced being treated by health care professionals wearing protective equipment. The analysis was performed with thematic analysis. In Study IV, we used classic grounded theory methodology to explore the main concerns of family members of critically ill patients cared for in an ICU, from when the patient became critically ill until everyday life at home. Data were collected from three different general ICUs in Sweden. Fourteen interviews initiated with one open-ended question, and observations of eight other participants during the patient’s ICU stay were analysed. Findings: Patients’ HRQoL improves over time but is still affected one year after the ICU care. During their stay in the ICU, patients could experience delusional memories with unpleasant content often related to death, which could have a long-lasting impact even after discharge from the ICU. However, the experiences of critical illness and intensive care had a greater influence in patients’ lives. For patients and even for the family members, critical illness and treatment in the ICU is an extremely emotional and stressful experience, with long-lasting impact on well-being and sense of losing control. Patients and their family members have different strategies to deal with critical illness, treatment in ICU, and complications of critical illness to regain control. Regaining control can be facilitated by patterns of behaviours to achieve social support, maintain autonomy, find explanations, and maintain hope, which can be promoted by having trust in other individuals. Strategies such as humour and activities can help to dispel thoughts and increase well-being. Strategies used in a constructive way could facilitate ability to leaving behind, not to forget but to relate to prerequisites in life. However, processing takes time; moreover, for some, it becomes overwhelming. Conclusion: Intensive care patients and their families can find themselves in a vulnerable state. Their experiences and strategies used to manage the process from critical illness until recovery/everyday life at home vary, but it is a traumatic experience for everyone involved. This highlights the need for a more holistic thinking during care and follow-up, which involves the whole family, and everyone’s needs.