Lived experience of cognitive-communciation changes: Qualitative evidence synthesis

Please note. This review was updated in August 2025.BACKGROUND AND OBJECTIVES: Cognitive-communication disorder is common after acquired brain injury (ABI), reported in about two-thirds of people who sustain an injury. Quantitative studies have found that the disorder can negatively impact a person’s ability to socially integrate into the community, return to work or education and achieve a greater quality of life. However, little is known about how the disorder impacts people with ABI and the family. Therefore, the aim of this synthesis was to provide a detailed exploration of the lived experience of cognitive-communication disorder for people with ABI and their family members.METHODS: A systematic literature search was conducted across nine databases (CINAHL Ultimate, PsycINFO, PsycARTICLES, Medline, EMBASE, AMED, Scopus, NeuroBITE, PubMed) to May 2024. Studies were included if they reported on people with ABI who present with cognitive-communication disorder and/or their family members whereby the impact of the disorder was described. Relevant data were extracted, and studies were critically appraised using the Critical Appraisal Skills Programme (CASP) qualitative checklist and the confidence of the findings was assessed using GRADE-CERQual tool. The final studies were synthesised using thematic analysis.RESULTS: Ten articles met the eligibility criteria and reported on 85 people with ABI and 41 communication partners. Methodologies included interviews (n=7), focus groups (n=1), spoken discourse samples (n=1) or online survey (n=1). Eight main analytic themes were identified centred around the experiences of people with ABI: (1) communicating is not easy; (2) lack of awareness and feeling tired; (3) anxiety, embarrassment and isolation; (4) connecting with others; and (5) participation and identity; AND their communication partner: (6) adjusting to giving increased support; (7) emotional toll of supporting; (8) relationship and life role changes.CONCLUSIONS: This review highlights the broad and unique impacts of cognitive-communication disorder for both people with ABI and their family. People with ABI require tolerance to manage their communication difficulties; and family members require support and guidance to manage the change in relationship. These findings underpin the need for interventions to include family members in rehabilitation and for therapists to consider the diverse needs of people with ABI including emotions, relationships, social participation and changes to identity.