Stories of survival: exploring long-term psychosocial well-being in childhood survivors of acute life threatening critical illness: a multiple-case study.
PhD thesis, University of Nottingham.
Background: Childhood critical illness is characterised by a rapid and potentially catastrophic loss of physiological reserve caused by a wide variety of illnesses and injuries. In the Western world, death from childhood critical illness is rare due to advances in paediatric intensive care (PIC) provision, medicine, technology and public health. However, surviving PIC can expose children and their families to a complex array of physical, psychological and social problems. Physical disability, chronic illness, delirium, and stress symptoms have been reported to manifest in the immediate to short-term (<six months post-PIC). Existing research has focused on quantifying the outcomes and impact of surviving childhood critical illness. Furthermore, decontextualised, pathologised, and uni-dimensional platforms to inquiry are the dominant approaches used. Collectively, this has impeded understanding of how childhood survivors construct and experience long-term (≥ six months post-PIC) psychosocial well-being.
Aim: This study aimed to explore how long-term psychosocial well-being is described, experienced and constructed by PIC survivors within the context of their lives.
Methods: A longitudinal, qualitative, multiple case study approach was used. Nine case studies were formed around a heterogeneous group of nine child and adolescent PIC survivors of an acute life-threatening critical illness (aged six-16 years), admitted to a single UK Paediatric Intensive Care Unit (PICU) at least six months previously. A further 23 significant others, including family members, health professionals and teachers, were identified by the PIC survivors to participate. Each case, bar one, was explored longitudinally over a six-month period collectively providing a follow-up period of six to 20 months post-PICU discharge. Data were collected from October 2012 until July 2013 and included 42 data collection visits. A flexible toolbox of qualitative methods (interviews and art-based approaches) was used to capture stories and accounts. Collectively, 33 hours of audio data and 427 images were collected. Data were analysed sequentially that provided insights into psychosocial well-being from the individual, within the case, and across cases. Both abductive and inductive analytical approaches were used that included narrative psychological analysis, correspondence and pattern matching, and aggregating of case findings.
Findings: Findings from survivor accounts illuminate multifaceted and complex storied experiences. Stories were distinctive, varying in how they were constructed as well as in content, with differing biographical, experiential and aspirational accounts. These remained grounded in survivors’ day-to-day lives involving vibrant imagery of life events, contextual factors and prosperities. However, adversities also featured through reports of amnesia, uncertainties, traumas, contemplation of death and dying, and stigma, which appeared to collectively direct constructions of psychosocial well-being.
From exploring within each case study, the context of PIC survivors’ lives appeared complex, featuring ongoing adversities, chaos and change. Stories diverged between survivors and significant others as untold and hidden narratives emerged. However, shared stories also appeared, with a distinct focus on future aspirations and recovery. Shared residual traumas and adversities also featured, with narratives of sacrifice and protection being told, that in turn exposed significant others to additional adversity.
Findings from across contexts identified multifarious imagery with interwoven and intricate stories that illuminated the complexity of survivor experiences and lives. However, amongst this chaos, common themes from across PIC survivor stories were evident. Themes included: disrupted lives; exposure to death and dying; mediation between different social worlds and identities; and the focus on getting on with life. Through aggregating instances across whole-cases, the inter-relational nature of long-term psychosocial well-being was highlighted.
Collectively, findings identify that PIC survivors construct long-term psychosocial well-being within the context of their lives as a paradox; a state of disruption and flux, and an inter-relational and dynamic entity.
Conclusion: Childhood PIC survivors’ stories are complex and identify numerous challenges and adversities that are faced when attempting to readjust to life in the long-term post-PICU. Mediation between psychological and social worlds can expose survivors to both negative and positive well-being. However, biographical, individual, familial, social, and wider societal influences also appear significant in how PIC survivors construct and experience psychosocial well-being in the longer term. These novel insights into this unexplored phenomenon challenge existing theoretical propositions from the literature and provide a platform for further inquiry.
Thesis (University of Nottingham only)
||Critical illness, Children, Adolescents, Psychosocial, Well-being, Paediatric intensive care, Narrative, Multiple case study, Longitudinal
||W Medicine and related subjects (NLM Classification) > WS Pediatrics
||UK Campuses > Faculty of Medicine and Health Sciences > School of Health Sciences
||06 Oct 2015 10:34
||14 Sep 2016 14:34
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