Understanding the Neurodiversity of Grief: A Systematic Literature Review of Experiences of Grief and Loss in the Context of Neurodevelopmental Disorders

Abstract

This systematic review explores lived experiences of grief in the context of neurodevelopmental disorders (NDDs), considering mental health impacts and how these experiences are expressed/understood. Reviewing qualitative research and grey literature centred on lived experience, 39 articles were identified through a systematic search of 8 databases and 1 page-ranked search engine. The articles were critically appraised, and results synthesised using thematic analysis and meta-synthesis. Four main themes and an overarching theme, titled Recognise the Unrecognised, emerged: Hidden Grief, Supported and Included, Understanding My Loss, and The Double Taboo of Death and Disability. The results indicate that grief often goes unrecognised in individuals with NDDs, especially following non-death losses. The implications of these findings and recommendations for future research are discussed.