The Impact of Caring for People with Spinal Cord Injury (SCI) on Carer’s Subjective Well-Being and Physical Health: A Realist Synthesis Review

Objective: To identify and summarise studies of the psychological well-being of informal carers of people with spinal cord injury. Design: The review included studies if they reported the carers perspective of care giving – studies that focused mostly on the person with spinal cord injury were included only if the carers perspective of the caregiver role could be extracted. Data sources: Electronic searches of MEDLINE, CINAHL, Psych Info, Sociological Abstracts and The Cochrane Library were carried out between December 2013 and February 2015, with update searches undertaken in October 2016. Review methods: A realist synthesis approach was adopted to evaluate studies according to their contribution and drew together evidence from a range of methodologies, including qualitative and quantitative studies. Findings: 28 studies met the inclusion criteria. Nineteen studies focused only on the caregiver (quantitative studies = 13; qualitative studies = 5 and 1 mixed method approach) and four included caregivers and the person with a SCI (quantitative studies=2; qualitative=1 and 1 mixed method approach). Three papers used non care giving age matched comparative approaches. The majority of the studies were conducted in the USA (11), with three from the UK, 2 from Australia and 3 from Brazil. The remainder of studies were international and comprised 1 from China, 1 from Turkey, 1 from the Netherlands, 1 from Canada, 1 from Denmark, 1 from Fiji and 1 from Iran. The total number of SCI carers was 1772; the majority were female (ranging from 88 % to 100% of the samples included) with an age range average (where this has been calculable) of 43.6 Common methodological limitations of studies included in this review were a lack of non-carer age-matched comparison groups, focus on the experience of female caregivers, small sample sizes, and failure to follow up caregivers longitudinally. Several studies provided estimates of the prevalence of subjective well-being and physical health distress among caregivers but no conclusions could be drawn from the current evidence base. The review suggests that many factors are related to caregiver subjective well-being including caregiver attributes, the severity of the spinal cord injury, the relationship dynamics between the carer and the spinal injured individual and objective and subjective assessments of the burden of care. The perceived adequacy of support also emerges as an important aspect with perceived positive and potentially negative impacts on the carer. Conclusion: Further studies are needed to clarify the prevalence of SCI caregivers' subjective well-being and situation specific factors that predict poorer carer health outcomes. This work will enable appropriate interventions to be developed and evaluated. What is already known about this topic?  Emphasis has been increasingly placed on the delivery of care to patients with SCI in the community and this approach places increased care responsibilities on informal carers.  General carer literature indicates that providing care is associated with poorer psychological health outcomes. What this paper adds  Although from small studies with methodological limitations there is evidence to suggest that providing informal SCI care is stressful.  A number of factors are associated with carer subjective well-being including lack of professional support.  Rigorous, longitudinal studies using age-matched comparative controls are needed to develop and evaluate interventions for this population.