Intensive Care Survivors' Perspectives and Post-Intensive Care Syndrome

Critical care medicine was developed in the 1950s when physicians created hospital units offering close monitoring of patients with life-threatening illnesses (Vincent, 2013). During the intervening 70 years, critical care medicine evolved to the point that fewer than 20% of intensive care unit (ICU) patients succumbed to their illnesses (Garland, Olafson, Ramsey, Yogendran, & Fransoo, 2014). Improved survival rates have encouraged researchers and providers to examine the consequences of critical illnesses and ICU stays for involved patients. Post-intensive care syndrome (PICS) is a group of new or worsening symptoms and debilities experienced by ICU survivors related to critical illness and ICU stay (Jutte, Erb, & Jackson, 2015; Needham et al., 2012). PICS can include decreased functional, cognitive, neurological, and psychological functional status. While PICS’s description has improved the management of many issues experienced by the ICU patient population, the definition of PICS is medically-derived. This study addresses a knowledge gap of PICS, the “lived experience” of ICU survivors with self-reported PICS. A constructivist grounded theory approach was used to examine social media posts of twenty ICU survivors with PICS. The posts were written by self-reported adult ICU survivors with PICS symptoms at varying lengths of time after hospital discharge for their inciting critical illness. The resulting 325 posts were transcribed verbatim. Comparative methods and inductive analyses provided categories based on relationships between focused codes and emerging themes to allow for the development of a grounded theory to explain the process of recovery for ICU survivors with PICS. The GT approach allowed for an examination of differences between provider- and patient-perspectives of PICS and facilitated examination of facilitators and barriers experienced by ICU survivors throughout their recovery period. The resulting GT model was then used to compare patient-focused experiences versus the accepted provider-driven definition of PICS. An explanatory matrix (EM) was developed to collate the themes collected from the ICU survivors’ posts and summarized as the ‘Journey to a New Normal’. The EM provided a resource for expanding the definition of PICS to include a more patient-centric perspective of the related health issues experienced by intensive care survivors. As the central process, the ‘journey to a new normal’ represents the course of recovery for ICU survivors with self-reported symptoms of PICS as they recuperate from their recent critical illness. Many patients experience an eventual plateau in recovery representative of their ‘new normal’. The contributing processes affecting the ‘journey to a new normal’ included separating nightmares from reality, individualizing the process of recovery, and determining the consequences of survival. Consequences of the journey to a new normal state included dealing with false memories related to delirious episodes, changes to overall health and functional status, new survival needs, evolving definitions of life’s value after ICU, and engaged versus absent support systems (Chapter 4, Figure 1). In 2020, many ICU survivors have expressed unprecedented anxieties surrounding media coverage of the COVID-19 pandemic. The public information about COVID-19 has prompted some intensive care survivors to adjust or write new advance directives precluding readmission to an ICU, intubation, or advanced life-support measures. This study provided an examination of patient-focused experiences with recovery after critical illness and added patient-driven perspectives to augment the provider-focused definition of PICS for the overall goal to improve patient recovery and health outcomes.