Loneliness in the context of acquired brain injury (ABI): a systematic review of survivors’ experiences and research using the World Café to explore how services can help and support survivors of ABI experiencing loneliness

Loneliness is defined as a subjective experience based on a feeling of connection, however it is also multifaceted and influenced by a range of factors. Loneliness is a long-term concern in populations with acquired brain injury (ABI). There lacks a consensus on conceptualisation of the experience of loneliness and factors contributing to it following brain injury. There is also a lack of guidance regarding how services can holistically address survivors’ loneliness needs. The systematic review in this thesis aimed to provide the first comprehensive understanding of loneliness in brain injury, grounded in the lived experience of survivors. A Joanna Briggs Institute (JBI) qualitative systematic review was employed to review studies, exploring subjective experiences of loneliness survivors of ABI. Included studies were published in English and explored experiences of loneliness from the perspective of adults with ABI. Findings were extracted and grouped into synthesized findings using JBI meta-aggregation. Findings of the systematic review support conceptualisations of loneliness as a multidimensional construct influenced by multiple factors as well as suggesting experiences specific to ABI are associated with loneliness in this population. The empirical project then used an online World Café as a form of Participatory Action Research to explore how services can help address loneliness following acquired brain injury. The World Café was held across two days with 16 stakeholders (survivors, family members and professionals). In the World Café, stakeholders made recommendations regarding how services can help with loneliness for survivors of ABI. Facilitators and barriers to accessing loneliness support were also explored. The different perspectives of the stakeholder groups led to the iterative development of recommendations that were informed by diverse expertise and considered a range of implementation factors, supporting their applicability to practical contexts. Thesis is embargoed until 31 December 2026.