The impact of cognitive-communication difficulties following traumatic brain injury on the family; a focus group studyPrimary Objective: To identify how families experience cognitive-communication difficulties following Traumatic Brain Injury (TBI). Experiences of information, training and support for managing communication changes was also explored.Research Design: Qualitative focus group methodology using thematic analysis. MethodFifteen family members of individuals with cognitive-communication difficulties following severe TBI participated in the study; 4 parents, 6 spouses, 3 siblings and 2 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 was transcribed verbatim and analysed 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: Cognitivecommunication 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.
Background Whilst research into the wide‐ranging needs of family members following traumatic brain injury (TBI) is well established, investigation into the specific needs of families in relation to supporting cognitive–communication difficulties, relationships and social participation is limited. Aims To identify the family needs for cognitive‐communication difficulties following TBI and to explore whether current services are meeting these needs. Methods & Procedures Following a successful pilot, family members from the UK and Australia were invited via posters, social media and e‐mail to take part in an anonymous, communication needs survey. Data arising from the thirty two closed questions (six eligibility, nine demographic and seventeen needs questions) were analysed using SPSS descriptive statistics. Data arising from one open question were analysed using qualitative content analysis. Outcomes & Results A total of 102 family members from the UK (n = 89, 87%) and Australia (n = 13, 13%) completed the survey. The majority of respondents were female (n = 76; 75%), between the ages of 30 and 69 (n = 88; 87%), and either a parent or a partner of the person following TBI (n = 78;76%). Respondents rated information about expected recovery from cognitive‐communication difficulties and training in helpful strategies as their most important needs. The majority of respondents (more than 60%) were not satisfied that any of their cognitive–communication needs had been fully met and high levels of unmet need remained evident at three years or more post‐injury. Written information, communication partner training and counselling were identified as key supports. Conclusions & Implications Families report high levels of unmet need for managing cognitive‐communication difficulties following TBI. Access to written information and communication partner training should be available to families at various time points following TBI and not just in the early stages.
There have been many challenges along the way, however, our journey continues and we have many more miles to go. Early feedback from parents and families is positive and they enjoying the diversity of our service.
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