A survey of cognitive–communication difficulties following TBI: are families receiving the training and support they need?

Abstract

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.

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

“…Participants in the 36 months + focus groups continued to express concern about the same CCD changes that were identified by participants in the 0-12 months and 12-36 months groups. This lends support to the findings that CCD difficulties persist over time (15,16,24,27,65) and reinforces the need for further longitudinal research and clinical support over this trajectory (25).…”

“…Family caregivers report less stress at social events and improved confidence in supporting the person following TBI in conversations following CPT interventions (64). Few studies have explored how family members experience and manage the consequences of CCD over the longer term, however, and a recent survey identified that families experience high levels of unmet need for CCD over this trajectory (65).…”

The Cognitive-Communication Checklist for Acquired Brain Injury: A Means of Identifying, Recording, and Tracking Communication Impairments

“…Also, the need for speech-language pathology referral may be hidden in subpopulations where ABI-related cognitive-communication difficulties are superseded or obscured by other treatment priorities such as for those with spinal cord injury (Gordan et al, 2012), encephalitis and Lyme disease (Langenbahn et al, 2013), or COVID-19 influenza (Ramage, 2020). When cognitive-communication difficulties appear at later stages such as return to work or school, many are unable to find their way to speechlanguage pathology services due to unclear systems or lack of knowledge of rehabilitation services (Douglas et al, 2016;Gagnon et al, 2008;Grayson et al, 2020;Kennedy et al, 2008;Tran et al, 2018). In all of these instances, when the individual is outside of a care pathway leading to speechlanguage pathology, when referral sources are less knowledgeable or less inclined, or where funding sources are untrained or uncompelled to assist, the responsibility falls to the individual or family to describe communication challenges and self-advocate by using the very communication skills that are impaired.…”

Optimizing our evidence map for cognitive–communication interventions: How it can guide us to better outcomes for adults living with acquired brain injury

“…These consultations led us to shape the clinical recommendations in the CCEAS-Map to include provision of 'tailored' approaches to education and support, 'written' information, 'ongoing access' to information as needs and awareness change, and to provide 'options' adapted to their needs and preferences. Furthermore, based on our consultations and reviews of family education (Grayson et al, 2020), and communication partner training (Behn et al, 2021;Wiseman-Hakes et al, 2020), we decided to emphasize the overarching principles of 'person-centred', 'collaboration', 'contextual' and 'life participation' approaches to intervention. We, therefore, changed the title of the CCEAS-Map Education and Counselling section to Overall Principles and Approaches to Intervention to encapsulate these principles.…”