Preamble
This chapter is one I was looking forward to, as working with individuals following TBI is what I do best. The initial design of this phase was to have multiple individuals with TBI participate in assessments, interviews, and a group experiment to observe natural conversation with varying attentional demands (e.g., initial ethics approval Appendix A).
Participants were recruited, and a psychology student was ready to support me as I conducted this experiment. However, a lockdown occurred in New Zealand because of the pandemic, and this design could not continue. A complete redesign and amendment to ethics were sought to complete something that recognised the core and focus of the original design (e.g., ethics amendment letter Appendix A). The challenge and vexation of shifting to another experimental design were significantly reduced by the drive to ensure the person with a TBIs voice was part of this research project.
Introduction
Traumatic brain injuries are heterogeneous in the type of injury, location of injury, and, more importantly, how the TBI affects the person (Covington & Duff, 2021). The single classification of a TBI only accounts for the type of injury, but what is unaccounted for and varies from one person to the next are the individual characteristics of the person (e.g., values, education, vocation, age, gender, culture, personality, lifestyle, etc.) and the characteristics of the injury (e.g., severity, locus of lesion(s), types of lesions, surgical procedures and interventions required, etc.) These multiple variables result in TBIs being as unique as a fingerprint. There are common and predictable presentations that have come from decades of research, assessment, and observation that guide clinicians and researchers alike to treat cognition and cognitive communication following TBI (Cicerone et al., 2019; College of
Audiologists and Speech-Language Pathologists of Ontario, 2015; Ponsford, Bayley, et al., 2014; Tate et al., 2014; Togher, Wiseman-Hakes, et al., 2014).
Observing communication within function or through conversation is an important way for SLTs to determine a person’s strengths and weaknesses. A component of an SLT’s clinical toolbox is to assess and diagnose cognitive communication difficulties through measuring discourse and completing cognitive assessment batteries (Brown et al., 2022;
College of Audiologists and Speech-Language Pathologists of Ontario, 2015). Assessment can take multiple forms and approaches; two approaches are discussed here. Firstly, a standardised assessment is one that follows a standard set of rules for the administration of a test. An additional type of assessment is called dynamic assessment, which involves utilising a combination of standardised assessments alongside non-standarised approaches to identify the effect of factors that influence performance (Coelho et al., 2005). Using non-standardised and context-sensitive assessment is a way to capture dysfunction within functional activities.
Following a TBI, individuals can perform well within standarised assessments, but struggle within their daily lives, with the reverse is also possible. Combining these assessment approaches makes it possible to obtain the most cohesive and ecologically validated picture of someone’s performance (Coelho et al., 2005). Discourse or pragmatic language assessment is part of the non-standardised toolbox. It involves the SLT observing a conversation and interjecting targeted questions and structures that challenge the communicator. The SLT can then use specific analysis or rating scales to gauge the specific areas of strength and weakness of the recorded discourse sample. Observing communication and discourse can be a very powerful tool to capture cognitive communication difficulties following TBI. Communication complexity is best observed within a natural setting or through conversation. Observing how cognitive skills function and are present within a conversation is challenging, but when using
an approach such as dynamic assessment this provides a comprehensive profile of the individual’s communication and cognition.
This chapter utilises a standardised and non-standardised assessment approach to capture an individual’s attention-related communication abilities and difficulties. The targeted questions for this portion of the project include:
• What are the attention-related communication difficulties of someone following a TBI?
• What is the lived experience of a person with TBI with attention-related communication difficulties?
Methods and Procedure
A single case study design that acknowledges the heterogeneity of TBI was used. A single case study provides a deep insight into how a person's attention and communication difficulties behave. The limitation of this design is the struggle to cast generalisations to all individuals with TBI and attention-related communication difficulties; however, even a small-but-granular account of this experience remains valuable.
Inclusion criteria for this project included adults (18+) with a moderate or severe TBI at least 6 months since their injury. Recruitment for this study was completed via the ABI Rehabilitation research committee using letter drops to previous clients who consented to participate. In addition, visual advertisements were placed at two Auckland community brain injury organisations, ABI Rehabilitation, and Headway House. Advertisements were first emailed to managers at these locations to request their support in advertising this research project. Participants then self-selected and contacted the researcher to participate. Multiple participants were initially recruited; however, they withdrew from the study owing to the Auckland lockdown and COVID-19 restrictions.
The experiment had three components: 1) formal cognitive assessment, which reviewed the participants' attention and communication skills; 2) observation of natural conversation with a planned distraction to review the participants communication skills alongside attentional demands; and 3) ending with an interview.
The assessment and interview took place at the University of Auckland Grafton clinics in a quiet clinical space and lasted approximately 3.5 hours over two separate sessions.
The assessments completed included the La Trobe Communication Questionnaire (self-report and close-other report) (Douglas et al., 2000); Behaviour Rating Inventory of Executive Function – Adult version (BRIEF-A) (self-report and informant report) (Roth et al., 2005);
and the Test of Everyday Attention (TEA) (Robertson et al., 1994). These assessments were completed during the first session, where the close-other reports for the La Trobe
Communication Questionnaire and the informant report for the BRIEF-A were provided to the participant to be given to their spouse and returned for the second session. The interview was completed during the second session (see interview script and agenda, Appendix B) and started with a 20-minute natural conversation task with a planned distraction to analyse the participant’s communication using the PRS (Iwashita & Sohlberg, 2019; MacLennan et al., 2002).
The interview data was analysed using reflective thematic analysis with a deductive approach (Braun & Clarke, 2021, 2022). The themes were developed and informed from previous phases of this project, specifically the health professionals and family data
(presented in Chapter 4). Themes initially focused on both strategies used by the participant and the types of communication difficulties experienced. Coding focuses on semantic
meaning to define and formulate the themes.
La Trobe Communication Questionnaire (LTCQ)
The La Trobe Communication Questionnaire is a self-report measure designed to assess social communication skills in individuals following a brain injury (Douglas et al., 2000). This instrument was used because of its strong construct validity, and it is a reliable measure of communication abilities following TBI, specifically capturing the complex interplay of cognition and communication in social discourse (Douglas et al., 2007).
Behaviour Rating Inventory of Executive Function – Adults (BRIEF-A)
The BRIEF-A is a standarised questionnaire that captures views of an adult’s
executive functions or self-regulation in their everyday environment. It has a self-report and an informant report (someone close to the person). It has sound psychometric properties when used with adults following TBI (Waid-Ebbs et al., 2012). This assessment also captures the specific cognitive function required for basic executive functioning skills, including working memory, which is considered required for inhibitory control (Mateer & Sohlberg, 2001).
Test of Everyday Attention (TEA)
This assessment examines the different types of attention within functional tasks. The assessed attention types include visual selective attention/speed, attentional switching, sustained attention/divided attention, and auditory-verbal working memory. This assessment was chosen because it attempts to have a functional representation of attention skills and discern between different types of attentional skills. It is acknowledged that the assessment subtests (Map Search and Visual Elevator) draw on multifactorial cognitive processes and cannot be attributed solely to attention alone (Bate et al., 2001).
Pragmatic Rating Scale (PRS)
The PRS is a rating scale completed by clinicians reviewing broad categories of communication. These include: “nonverbal communication,” encompassing extralingual
aspects such as eye contact and body language; “propositional communication,” relating to aspects of information conveyed by the speaker such as relevance, clarity, and organisation;
and “interactional communication,” relating to the reciprocal give-and-take of conversation between people, such as turn taking and repair of communication breakdowns (MacLennan et al., 2002). A modified PRS based on Iwashita and Sohlberg (2019) was used for this study as this includes clear concrete anchors for each communication category. As stated above, an additional external distraction was added during this natural conversation to observe her ability to alternate attention between the distraction and a conversation.
Results Participant
LT is a 65-year-old woman who suffered multiple falls that resulted in a moderate TBI. This was also followed by a transient ischemic attack (TIA). These unfortunate events occurred eight years before this assessment. LT received outpatient support through
occupational therapy (OT), vocational therapy, SLT, and physiotherapy, but did not participate in inpatient rehabilitation following her injury. She also reported utilising the services and supports offered through Headway House in Auckland. LT lives with her
husband JT, in Auckland. They have adult children and young grandchildren. LT supports her daughter in looking after and spending time with her grandchildren. LT continues to work in the same vocation of accounting and payroll, albeit with reduced hours and a changed
physical location (now her home office) compared to her premorbid working hours. LT has a university degree and was working full-time prior to her brain injuries. LT has a passion for knitting in her spare time.
Assessments
La Trobe Communication Questionnaire. LT and her husband displayed similar ratings overall with LT’s self-report rating of 77 and her husband’s rating was 73. This resulted in overall agreement, with LT perceiving her own social communication difficulties slightly higher than her husband. These overall ratings do indicate perceived difficulties with social communication compared to the normative sample. Within the different scales, there was an agreement between LT and her husband for social communication difficulties within the skills of conversational partner sensitivity (quality and quantity; giving accurate
information, talking for too long, going over the same ground), conversational attention/focus (difficulty in groups, losing track in noise, sidetracked by details, missing details),
conversational flow (using the correct words, answering promptly, topic maintenance), and conversational engagement (revision behaviours, need for repetition, and appropriateness).
The areas of difficulty that LT’s husband reported higher than LT, included manner (not what is said but how it is said, such as turn-taking) and cognitive communication difficulties (attention, initiation, word finding, disinhibition, tangentiality).
Self-Report. LT self-rated her communication abilities and the frequency of occurrence for each behaviour, and how this shows up in her daily life. LT was able to identify communication skills that often appear within her daily communication; these include:
• Leaving out important details (insufficient information)
• Switching to a different topic too quickly – she describes as having fleeting thoughts (topic maintenance)
• Needing a long time to think before answering the other person (delay before responding)
• Having difficulty thinking of the particular word (word finding)
• Saying or doing things that others consider rude or embarrassing (situational inappropriateness)
• Hesitating, pausing and/or repeating herself (linguistic non-fluency)
• Getting side-tracked by irrelevant parts of the conversation (tangentiality)
• Needing the other person to repeat what they have said before being able to answer (memory)
• Answering without taking time to think about what the other person has said (disinhibition/impulsivity) – she describes holding and “clutching the thought” and has a sense of losing the thought, so she answers quickly to mitigate this loss of thought.
The communication behaviours that usually or always appear within her daily communication include:
• Speaking too slowly (rate)
• Allowing people to assume the wrong impressions from her conversations (message inaccuracy) – she describes that it is easier (to assume the wrong impressions) than explaining
• Losing track of conversations in noisy places (distractibility)
Close-Other Report. LT’s husband reported the following behaviours either higher or the same as LT’s ratings and indicates these occur often:
• Knowing when to talk and when to listen (turn-taking)
• Going over the same ground in conversation (information redundancy)
• Difficulty with group conversations (distractibility)
• Needing time to think before answering (delay before responding)
• Hesitate/pause/repeat oneself (linguistic non-fluency)
• Difficulty thinking of words (word finding)
• Answering without thinking (disinhibition/impulsivity)
• Side-tracked by irrelevant parts (tangentiality)
LT’s husband reported the following behaviours as occurring usually/always:
• Difficulty closing conversations (difficulty with initiation)
• Lose track in noisy places (distractibility)
BRIEF-A
Self-Report. The profile indicated that LT’s behavioural regulation index (overall ability to maintain appropriate regulation of behaviour) is at the 97th percentile and the metacognition index (ability to systematically solve problems via planning and organisation while sustaining these task-completing efforts in active working memory) and global
executive composite index (incorporates all clinical scales within the BRIEF-A) were both at the 99th percentile. This indicates that her overall executive functioning is significantly impaired and displays executive dysfunction compared to the normative sample.
Strengths. LT self-reported organisation of materials (cognitive task-oriented aspects of organisation in your everyday life with respect to the orderliness of work, living, and storage spaces, such as desks, closets, and bedrooms), inhibition (the ability to inhibit, resist, or not act on impulse and the ability to stop one’s behaviour at the appropriate time), and self- monitoring (keeping track of the persons' behaviour and the effect of their behaviour on others) as abilities within normal limits all ranging from 72–75th percentile.
Areas of Difficulty. The remaining executive function skills were self-reported and indicated executive dysfunction that was significantly above the mean of the normative sample; these include:
• Shifting – the ability to move from one situation, activity, or aspect of a problem to another as the circumstances demand.
• Emotional control – the ability to modulate and control emotional responses. LT indicated that she is not angry but does feel the urge to cry often.
• Initiation – the ability to begin a task or activity and to independently generate ideas, responses, or problem-solving strategies.
• Working Memory – the person's capacity to actively hold information in mind to complete a task or generate a response. LT indicated that she feels “out of step” and
“not keeping up.”
• Plan/organise – the person’s ability to manage current and future-oriented task demands within a situational context.
• Task Monitoring – the extent to which a person can keep track of their own problem- solving success or failure.
Informant Report. LT’s husband JT completed the informant report. They have known each other very well for 48 years.
Strengths. JT reported LT’s executive functioning abilities to be within normal range for the skills of inhibit, emotional control, self-monitoring, and organisation of materials.
Areas of Difficulty. JT reported LT’s current executive function difficulties are within the skills of shifting, initiating, working memory, planning/organising and task monitoring.
Agreement. The disagreement between the two forms included contrasting scores for emotional control with LT having an elevated rating and her husband rating this to be within normal limits. LT’s rating of working memory was significantly more elevated than her husband's. The final disagreement was with LT rating her planning/organising ability to be within normal limits and her husband rating this slightly elevated.
The agreement with the behaviour rating index also displayed a pattern of LT rating herself as elevated with her husband rating within normal limits.
They both agreed with the metacognitive index and the global executive composite being elevated. LT reported an elevated difficulty with the behaviour rating index,
metacognitive index, and global executive composite compared to her husband. This may indicate that LT perceives more distress in the areas of difficulty than her husband perceives.
This may also indicate LT is highly aware and self-critical of her difficulties.
TEA. LT performed above average in the attentional areas of selective attention (subtests: map search and telephone search both at the 56.6-69.2 percentile), auditory-verbal working memory (subtests: elevator counting with distraction 79.8-87.8 percentile, and elevator counting with reversal at the 99.4-99.8 percentile), and sustained attention/divided attention (subtests: telephone search and telephone search while counting both at the 56.6- 69.2 percentile). LT did perform slightly below average for the last sustained attention task (subtest: lottery task at the 20.2-30.9 percentile); however, this appears to result from fatigue.
The type of attention that LT performed significantly below the mean was attentional switching (subtest: visual elevator timing score at the 0.2-0.6 percentile), where the target or accuracy was correct; however, the length of time she took to process and switch her
attention was significantly below the control group for her age.
PRS. The areas of strength that LT displayed within the conversation included all nonverbal aspects of communication (intelligibility, fluency, prosody, facial expression, eye contact, and gesture); propositional aspects of communication (cohesion and elaboration);
interactional aspects of communication (appropriateness, responsiveness, interruption, and feedback). LT responded well during the unplanned distraction, indicated by LT immediately returning to the topic of conversation that was being discussed immediately before the 3- minute visual and auditory distraction.
The severe to moderate difficulty areas included relevance or topic maintenance, initiation of topics, verbosity, and repair of a communication breakdown.
Qualitative Data
Three themes were generated that define and provide a narrative of her lived
experience following brain injury. The three themes include 1) attention and communication – what it looks like, 2) strategies used to manage, and 3) the adjustment and what it is like to live with these difficulties (Figure 3.1).
Figure 3.1
Thematic Map From the Interview/Qualitative Data
Attention and Communication – What It Looks Like
This theme provides an oversight into the specific communication difficulties and skills experienced by LT. These include seven subthemes that convey each attention-related communication difficulty.
• Fatigue
Fatigue affects all aspects of her functioning, with her attention and communication being no exception. Fatigue makes all conversations difficult to process and keep up with.
Absolutely my husband in particular first notices when I am going off track and the words start to go sometime if we are at home, he will say to me would you like to have a rest now.
• Inability to process verbal information
She discussed how she cannot process verbal information or instructions if she is not focused on the conversation or if the information is not written down.
I tell, especially when people are giving me instructions I have learned to say if I am not looking at you, I have not heard it.
• More sensitive emotions
She described the change of emotions following a brain injury to be more sensitive, and all emotions are exacerbated. This affected her ability to participate in social interactions, and she reported feeling embarrassed about overreacting.
The emotion, I say to people about the brain injury you have seven layers of skin and with the brain injury six layers were stripped away and I live with one layer, so you are so much more emotional as well as intolerant, so everything is much more difficult.
• Get back on track and going off-topic
Going off-topic or interjecting topics abruptly occurs frequently for LT. She described this occurring because she gets lost in a story or description and forgets the point of her narrative.
I go really off track. If I want tell you about something, my daughter being in hospital say and what happened, I will go off track, if the point I want to make that the
conditions in the hospital were at that time really bad I will want to illustrate that it