Abstract

Severe illnesses in children and adolescents/young adults (AYAs) may represent a complex burden for patients and their caregivers, including a wide range of mental disorders, particularly post-traumatic stress disorder (PTSD). Few events are as potentially traumatizing as having a son or a daughter diagnosed with a severe, life-threatening, or disabling disease. The presence of PTSD symptoms in caregivers may compromise their efficacy as caregivers and negatively affect the child’s well-being. This systematic review aims at outlining potential risk and protective factors for the development of PTSD symptoms in caregivers of children and AYAs affected by severe acute or chronic illnesses. Thirty-one studies on caregivers of children and AYAs affected by severe, acute, or chronic diseases were included. Socio-demographic and socio-economic characteristics, illness-related distress, psychiatric symptoms, support, and coping styles were found as potential risk/protective factors across studies. It is crucial to consider risk factors affecting caregivers of severely ill young patients, in order to plan focused interventions aimed at preventing an adverse clinical outcome in caregivers and at enhancing caregivers’ coping skills, in order to ultimately improve their quality of life.

Highlights

  • Severe acute or chronic illnesses represent a stressful burden for patients and their caregivers

  • The large majority of the studies analyzed was on caregivers of children and adolescents/young adults (AYAs) affected by tumors, investigated by fourteen studies [41,42,43,44,45,46,47,48,49,50,51,52,53,54]

  • The remaining diagnostic categories of children and AYAs whose caregivers were investigated for post-traumatic stress disorder (PTSD) were very heterogeneous and less numerous, and included neonatal intensive care unit (NICU) patients [55,56], epilepsy [57,58], burn injuries, and other accidents [41,59,60,61], disorders of sex development [62,63], asthma [64], transplants [65,66,67,68], HIV [66], Sickle cell disease [66], 3

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Summary

Introduction

Severe acute or chronic illnesses represent a stressful burden for patients and their caregivers. The Diagnostic and Statistical Manual of Mental Disorders—fifth edition (DSM-5) introduced illness in one’s child among the events considered as traumatic (“a medical catastrophe concerning one’s child”), specifying that the event must represent a condition that endangers life at the moment [15]. This definition overcame the previous DSM-IV-TR statement that required learning that one’s child has a life-threatening disease [16,17], highlighting the need for the traumatic event to be sudden and dangerous, focusing on the urgency and abruptness of the perceived threat [18,19]

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