Background Disorders of Consciousness is a collective term for individuals who are experiencing reduced awareness and altered states of consciousness, including vegetative states, minimally conscious states and coma states. This systematic review will primarily focus on informal caregivers of those experiencing prolonged Disorders of Consciousness. Prolonged Disorders of Consciousness are considered to be irreversible and chronic (Bernat 2006). Vegetative states can be described as “wakefulness without awareness”, while an individual in a state of coma will be unconscious and will not experience wakefulness (Bernat 2006 p. 1182). Those experiencing minimally conscious states may respond to some stimuli and may display some awareness of themselves and their environments (Bernat 2006). It was found that family members of individuals experiencing disorders of consciousness spent less time engaging in social and leisure activities, lacked desire to engage in previously enjoyed activities and experienced a decrease in occupational balance (Elliott and McVicar 2018). However, a preliminary search showed that there has been little research completed in the area of informal caregiver experience and interventions for this client group, particularly from an Occupational Therapy perspective. This systematic review will further explore the available research on caregiver experience of burden and quality of life.
Aims There are two primary aims of this systematic review. These are as follows: 1. To review the impact of caring for informal caregivers of people with Disorders of Consciousness on their Quality of Life (QoL) and Health Related QOL 2. To explore the measures and experiences of caregiver burden on caregivers of people with Disorders of Consciousness.
Search Strategy Systematic searches will be performed on six databases, inclusive of PubMed, Embase, EBSCO, Cochrane Library, CINAHL and Microsoft Academic. The search terms for this systematic review are as follows: 1. Quality of Life OR QOL OR Health-related QoL OR Wellbeing OR Well-being OR standard of living. 2. burden OR stress OR fatigue OR burnout OR strain. 3. Carer OR caregiving OR caregivers OR caring OR family OR informal carers OR parent OR sibling. 4. Disorders of Consciousness OR vegetative OR minimally consciousness OR unresponsive wakefulness syndrome OR prolonged disorders of consciousness OR PDOC OR DOC OR minimally responsive OR reduced awareness OR severe brain injury OR altered consciousness OR coma.
The inclusion and exclusion criteria for this systematic review are as follows: Inclusion: 1. All International Qualitative and Quantitative Studies. 2. All studies involving caregivers who are family members (parents, siblings or other family members) providing any form of informal care in a home setting, residential care setting or hospital setting will be included. Exclusion: 1. Non- English and non-full text studies.
Data Extraction This systematic review will follow and adhere to the PRISMA guidelines for systematic reviews and meta-analysis. The final search results will be critically analysed using appropriate appraisal tools and findings will be reported.
References Bernat, J.L. (2006) ‘Chronic disorders of consciousness (Review)’, Experimental and Therapeutic Medicine, 367(2), 1181–1192. Elliott, K., McVicar, A. (2018) ‘The impact of prolonged disorders of consciousness on the occupational life of family members’, Neuropsychological Rehabilitation, 28(8), 1375–1391.