Unmasking the Struggle: A Scoping Review Exploring Post-Traumatic Stress Symptoms in Caregivers of Individuals with Neurodevelopmental, Psychiatric and Neurocognitive Disorders

Abstract

The impact of caregiving on caregivers’ mental health is typically considered within the caregiver stress and burden literature; however, more recently, research has investigated the experience of post-traumatic stress symptoms (PTSS) in caregivers. As an emerging area of research, it is timely to conduct a scoping review to map the existing literature in relation to PTSS among adult caregivers of children and adults with neurodevelopmental disorders (NDD), neurocognitive disorders, and psychiatric disorders. The scoping review was conducted using Preferred Reporting Items of Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines and Arksey and O’Malley’s five-stage methodology framework. Published and unpublished gray literature between 2005 and 2022 was included in the scoping review. Nine thousand one hundred and twenty-five studies were originally identified for screening and 22 studies were selected for inclusion in the final review. Trauma and PTSS experienced by NDD caregivers were related to news breaking, NDD diagnosis, and behavioral issues, whereas caregivers of individuals with psychosis reported aggression and violence as traumatic events. Studies showed that up to half of caregivers reported PTSS, although no conclusions could be drawn about prevalence rates. A wide variety of tools measuring PTSS were used across the 22 studies. Many symptoms of PTSS were reported by caregivers, and cognitive appraisals were associated with PTSS in caregivers. The findings highlight the importance of recognizing the impact of trauma in caregiver mental health and the potential value of using traumatic stress frameworks with these populations. Research should be expanded to establish prevalence rates and to examine the long-term impact of trauma on caregiving as caregivers and care recipients age.