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Lived experience of cognitive-communication changes for people with acquired brain injury and familiar communication partners: A qualitative evidence synthesis

Behn, N. ORCID: 0000-0001-9356-9957, Christensen, I., Cruice, M. ORCID: 0000-0001-7344-2262 , Hilari, K. ORCID: 0000-0003-2091-4849, Kellar, I. & Togher, L. (2026). Lived experience of cognitive-communication changes for people with acquired brain injury and familiar communication partners: A qualitative evidence synthesis. PLoS ONE,

Abstract

Background and objectives
Cognitive-communication disorder (CCD) 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 re-integrate into the community, return to work or education and achieve a good quality of life. However, little is known about how the disorder impacts people with ABI and the family. Therefore, the aim of this qualitative evidence synthesis was to provide a detailed exploration of the lived experience of CCD for people with ABI and their family members.

Methods
A systematic literature search was conducted across eight databases (CINAHL Ultimate, PsycINFO, PsycARTICLES, Medline, EMBASE, AMED, Scopus, PubMed) to August 2025. Studies were included if they reported on people with ABI who present with CCD (or similar term) and/or familiar communication partners 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 included studies were synthesised using thematic analysis.

Results
13 articles met the eligibility criteria and reported on 103 people with ABI with CCD and 66 familiar communication partners including spouses, parents, friends, carers, siblings and children. Methodologies comprised interviews (n=10), focus groups (n=1), spoken discourse samples (n=1) and online survey (n=1). Eight main analytic themes were identified centred around the experiences of both 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 familiar 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 CCD for both people with ABI and their familiar communication partners. People with ABI require tolerance to manage their communication difficulties; and communication partners require education, support and training to manage the change in relationship. These findings underpin the need for interventions to include partners in rehabilitation and for therapists to consider the diverse needs of people with ABI including emotions, relationships, social participation and changes to identity.

Publication Type: Article
Additional Information: © the authors, 2026. This is an open-access article distributed under the terms of the Creative Commons Attribution License..
Publisher Keywords: Cognitive-communication, brain injury, qualitative evidence synthesis, lived experience, social communication, rehabilitation
Subjects: B Philosophy. Psychology. Religion > BF Psychology
H Social Sciences > HM Sociology
H Social Sciences > HN Social history and conditions. Social problems. Social reform
P Language and Literature > P Philology. Linguistics
R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry
Departments: School of Health & Medical Sciences
School of Health & Medical Sciences > Department of Allied Health
SWORD Depositor:
[thumbnail of Lived Experience QES Manuscript V5_plaintext_manuscript_CRO.pdf]
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