Loneliness in acquired brain injury; a qualitative exploration of lived experience.

Abstract

Objective: Loneliness is one of the biggest health concerns in the UK and is recognized as a health priority in Northern Ireland. Following an acquired brain injury (ABI), there is a sudden and catastrophic loss of function, impacting many areas of life, including loneliness. We explored the meaning of loneliness for adults with ABI and the experiences and factors influencing their loneliness.

Design: Qualitative study including three focus groups and four individual interviews, using a semi-structured interview guide, and recorded online.

Methods: Participants were recruited from the Community Brain Injury team caseload. Twenty-three adults (6 female, 17 male), ranging from 2 to 24 years post - ABI, participated. Data were thematically analyzed using a deductive approach, using framework analysis to guide theme development.

Results: Loneliness had a different meaning to participants, yet all experienced it at some point in their journey post-ABI. Four themes were derived from the focus group transcriptions; 1) 'A black hole with no sun' (definition) 2) 'A missing piece' (impairments) 3) 'I've become poor old mum' (identity) 4) 'Our own kind' (coping). Sub-themes were derived providing an in-depth exploration.

Conclusions: Supporting loneliness post-ABI is challenging and multifactorial. Early identification and support by clinical teams is crucial. The findings suggest mechanisms to provide such support, directly from those with lived experience.