The impact of cognitive-communication difficulties following traumatic brain injury on the family; a qualitative, focus group study

Primary Objective: To identify how families experience cognitive-communication difficulties following Traumatic Brain Injury (TBI). Experiences of information, training and support for managing communication changes were also explored. Research Design: Qualitative focus group methodology using thematic analysis.Method: 15 family members of individuals with cognitive-communication difficulties following severe TBI participated in the study; four parents, six spouses, three siblings and two offspring. The majority of participants were female (80%, n = 12), with a mean age of 51 (range 19–71). Four focus groups were held with family members at 0–12 months, 12–36 months and 36+ months post-injury. The data were transcribed verbatim and analyzed using NVIVO 12.Results: Cognitive-communication difficulties were found to impact upon family functioning and psychological wellbeing for several years post-injury. Changes to social cognition, insight and the “filter switch” of the person following TBI were key areas of distress. Participants highlighted the need for information about communication changes to be provided at several time points post-injury. The need for peer support from other families with experience of cognitive-communication difficulties was also identified.Conclusion: Cognitive-communication difficulties impact upon family functioning for many years following injury with families continuing to have support needs for communication well beyond the acute rehabilitation stage