Constructing a grounded theory of critical illness survivorship: The dualistic worlds of survivors and family members

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 need to consider the legacy of critical care beyond physiological survival is imperative. The aim of this study was to understand the critical illness trajectory from patient and relative perspectives.

Using a constructivist grounded theory methodology, in-depth interviews were undertaken with survivors of critical illness (n = 16) and family members (n = 15). Constant comparative analysis and data collection occurring concurrently with theoretical sampling commencing from the outset. EQUATOR guidelines for qualitative research (COREQ) applied.

Findings: Survivors of critical illness invariably experienced vivid, hallucinatory experiences which placed them in a different world or liminal space. The core difficulty can be summarised as follows: Survivors have little recall of the factual events of their critical illness, but relatives have lived the whole event in a very real and ingraining manner. This can result in family members and survivors experiencing different versions of the critical illness episode. Survivors of critical illness, together with family members, experience challenges 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. Exploring the dynamic interplay between intrapersonal, interpersonal and societal factors has provided theoretical insights with practice implications in relation to surviving critical illness. The findings from this study highlight the need for a rehabilitation infrastructure following critical illness to support the existing UK national guidance, ensuring the individual and holistic needs of survivors and their families are met. Conversations with survivors and their families around critical illness survivorship are frequently absent and needed early in the recovery period.