Caregivers’ perspectives of the challenges faced with survivors of traumatic brain injury: A scoping review

Abstract

INTRODUCTION: Traumatic brain injury (TBI) has wide-ranging neuropsychological, physical, social and financial implications. The impact on caregivers of moderate to severe TBI survivors, particularly in low- and middle-income countries, is under-investigated. AIM: Identify and describe the experiences of caregivers’ of moderate to severe TBI survivors postdischarge from healthcare facilities. METHODS: A scoping review was conducted utilising seven electronic databases. Two reviewers screened articles using eligibly criteria related to setting (postdischarge), caregiving (informal), age of TBI survivors (> 18 years) and injury severity (moderate-severe). Studies published in English between 1999 –2018 were included. RESULTS: Fourteen articles met the inclusion criteria. Articles reporting on the same sample were merged during data charting. The final analyses included 11 articles comprised of qualitative, quantitative and mixed-methods studies. Ten themes were identified: psychological distress, social functioning, financial burden, family experiences, coping strategies, access to services, time burdens and physical, cognitive and behavioural difficulties. Characteristics of caregivers and TBI survivors were also reported. CONCLUSION: Caregivers of moderate to severe TBI survivors experience challenges in various life domains, and there is limited research concerning caregivers in low- and middle-income countries. Future research should focus on understanding more nuanced experiences across various environments, which may increase comprehensive, flexible and long-term support.