Purpose: Loneliness is a long-term concern in populations with acquired brain injury (ABI). There lacks a consensus on conceptualisation of loneliness and factors contributing to it following brain injury. This systematic review aimed to provide the first comprehensive understanding of loneliness in brain injury, grounded in the lived experience of survivors.
Method: A Joanna Briggs Institute qualitative systematic review was employed to review studies, exploring subjective experiences of loneliness in adults with acquired brain injury. Three databases were searched in January 2024. Quality appraisal, data extraction and meta-aggregation followed JBI guidelines.
Results: 30 studies were included. Findings included a negative emotional experience of loneliness throughout survivors' journey post-injury including a sense of being trapped in loneliness. Loneliness could be experienced when alone or internally and was influenced by factors at the individual, interpersonal and systemic levels.
Conclusions: Findings support conceptualisations of loneliness as a multidimensional construct influenced by factors at multiple levels. They also suggest experiences specific to ABI are associated with loneliness in this population. Future research and clinical practice require a better understanding of the different factors that influence survivors' experience of loneliness and address these through evidence based interventions that operate across individual, interpersonal and systemic levels.
Keywords: Brain injury; experience; isolation; loneliness; qualitative; stroke.
Loneliness following acquired brain injury (ABI) is a negative emotional experience that can be experienced as being frequently alone or as an internal sense of disconnect and existential loneliness.Due to the impact of ABI on self-identity, existential loneliness and lack of connection are salient features of loneliness following ABI.The consequences of ABI are associated with multiple factors perceived to increase risk of loneliness which operate at the individual, interpersonal and systemic level.When assessing and providing intervention for loneliness following ABI, rehabilitation services should apply a holistic understanding of loneliness that considers individual, interpersonal and systemic factors.Survivors describe feeling trapped in their loneliness due to loss of access to the community and rehabilitation needs to include systemic intervention that removes the barriers to accessing community and social settings following ABI.