Theorising survivorship after intensive care: A systematic review of patient and family experiences

Abstract

Aims and Objective This systematic literature review explores and maps what we know about survivorship to understand how survivorship can be theoretically defined. Background Survivorship of critical illness has been identified as a challenge for the 21st Century. Whilst the use of the term ‘survivorship’ is now common in critical care, it has been borrowed from the cancer literature where the discourse on what survivorship means in a cancer context is ongoing and remains largely descriptive. In the absence of a theoretical understanding, the term ‘survivorship’ is often used in critical illness in a generic way, limiting our understanding of what survivorship is. The current COVID‐19 pandemic adds to an urgency of understanding what intensive care unit (ICU) survivorship might mean, given the emerging long‐term consequences of this patient cohort. We set out to explore how survivorship after critical illness is being conceptualised and what the implications might be for clinical practice and research. Design Integrated systematic literature review. The review protocol was registered with PROSPERO International Prospective Register of Systematic Reviews. PRISMA guidelines were followed and a PRISMA checklist for reporting systematic reviews completed. Results The three main themes around which the reviewed studies were organised are: (a) healthcare system; (b) ICU survivors’ families; and (c) ICU survivor's identity. These three themes feed into an overarching core theme of ‘ICU Survivorship Experiences’. These themes map our current knowledge of what happens when a patient survives a critical illness and where we are in understanding ICU survivorship. Conclusion We mapped in this systematic review the different pieces of the jigsaw that emerge following critical illness to understand and see the bigger picture of what happens after patients survive critical illness. It is evident that existing research has mapped these connections, but what we have not managed to do yet is defining what survivorship is theoretically. We offer a preliminary definition of survivorship as a process but are aware that this definition needs to be developed further with patients and families.

Surviving severe COVID‐19: Interviews with patients, informal carers and health professionals

“…The concept of ‘survivor identity’ is well established in the cancer literature 34 , 35 and it has recently been explored in critical care survivors in general. 30 , 36 , 37 , 38 ‘Survivorship’ has been described as a different concept from ‘recovery’. Recovery implies being ‘cured’ and back to life as it was, prior to illness.…”

“…For patients and families, returning home gradually leads to a reframed ‘survivor identity’. The concept of ‘survivor identity’ is well established in the cancer literature 34,35 and it has recently been explored in critical care survivors in general 30,36–38 . ‘Survivorship’ has been described as a different concept from ‘recovery’.…”

Health Equity: A Priority for Critical Illness Survivorship Research

“…The common theme among these studies is that there are associations between socioeconomic position and critical illness survivor outcomes, often demonstrating less favorable outcomes in less affluent populations. Furthermore, social and economic sequela can be substantial, not only for survivors but also for their family members who frequently take up the demanding role of caregiver (8). Coupled with the fragmented nature of critical illness survivorship care (9), the debilitating impacts of critical illness permeate a person's entire world and may negatively affect their socioeconomic position and exacerbate existing health inequities.…”

“…Furthermore, social and economic sequela can be substantial, not only for survivors but also for their family members who frequently take up the demanding role of caregiver (8). Coupled with the fragmented nature of critical illness survivorship care (9), the debilitating impacts of critical illness permeate a person’s entire world and may negatively affect their socioeconomic position and exacerbate existing health inequities.…”

Special issue: Rehabilitation in and after critical care

“…[7][8][9] ICU survivorship is defined as a dynamic process of changes to self, related to and following critical illness. 10 Survivorship following critical illness is known to be influenced by the quality of long-term recovery from the effects of critical illness. These combined physical and psychological consequences are commonly termed post-intensive care syndrome (PICS, or PICS-p for children).…”