Critical illness survivorship and implications for care provision; a constructivist grounded theory

Background In the context of increasing survivorship from critical illness it is important to enhance our understanding of the subjective experience of survivors and their families. The critical illness experience is enormously complex, varied and multifaceted. The need to consider the legacy of critical care beyond physiological survival is imperative. Aims of the study The study aimed to formulate a substantive, middle range theory in relation to patient and family’s critical illness trajectory. Further, to discern and understand the responses of critical care nurses to survivorship needs. Methods Working within a relativist ontology and a constructivist grounded theory methodology, a series of in-depth interviews were undertaken with survivors of critical illness (n=16), family members (n=15) (phase 1) and critical care nurses (n=11) (phase 2). Interviews were undertaken in a District General Hospital setting in England. All interviews were transcribed verbatim. Constant comparative analysis and data collection occurring concurrently with theoretical sampling commencing from the outset. Findings Survivors of critical illness invariably entered a liminal state between life and death on admission and during their stay in the Adult General Critical Care Unit (AGCCU). They frequently experienced vivid, hallucinatory experiences which placed them in a different world or liminal space where they could move or transcend in and out of different realities or worlds. The core difficulty can be summarised as follows; survivors have little recall of the factual events of their critical illness within AGCCU but relatives have lived the whole event in a very real and ingraining manner. This can result in family members and survivors experiencing totally different versions or narratives of the critical illness episode; constructing the concept of dualistic worlds. Nurses working within AGCCU found themselves bounded by the walls of the critical care unit and experienced personal and professional conflicts in their role, as they bear witness to critically ill patients and their families. The critical care environment was identified as a demanding place of work which appeared to limit nurses to immediacy of care in the here and now. The specialist knowledge and skill that nurses provided were central to physiological survival but they are unable to support the onward survivorship trajectory. Conclusion Survivors of critical illness, together with family members experience numerous challenges and adversities when endeavouring to readjust to life post critical care. This study has identified a middle range theory of dualistic worlds between and within the survivor and family member experiences. These temporal events occur during and after critical illness and expose a non-linear, fluid journey towards a new normal. Exploring the dynamic interplay between intrapersonal, interpersonal and societal factors has provided theoretical insights into critical illness survivorship and the legacy of critical care. Nurses in AGCCU bear witness to the early stages of the survivorship trajectory and provide complex care in support of survival; however they, are bounded by the walls of AGCCU such is the proximity to death and the pressure of work. They are unable to support the onward survivorship journey