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Treatment of Attention and Communication

Phase 4 Themes BEFORE convergence coding – Themes AFTER convergence coding

Figure 7.1

Progression of Themes During Phase 4 of Thematic Analysis and Use of Convergence Coding by MVS and CMC

Results Participants

The demographic and participant information for the entire survey is found in Chapter 5, including the participants’ profession, country where they practice, self-rated expertise, and types of clients they serve. The number of participants who answered the question analysed for this chapter was N=72 (44% completion rate).

Themes

Figure 7.2 presents the themes generated from the analysis and how their

interrelationships are conceptualised. The themes represent how health professionals perceive attention-related communication impairments to be pervasive in individuals following TBI.

The five themes supporting pervasiveness include behaviour, connections, self, purpose, and empowerment.

Figure 7.2

The Five Themes of How Attention-Related Communication Difficulties Affect Individuals Post TBI

Behaviour. This theme relates to negative consequences of mood and behaviour when attention and communication are affected. For example, where there is a change of personality in the person with TBI and they display increased aggression, depression, anxiety, and subtle frustration, leading to a feeling that “it is all falling apart” with “difficulties

maintaining friendships due to change in personality and being ‘frontal’” (SLT). Comments relating to social isolation, vulnerability, and long-term emotional and behavioural difficulties were also reported as consequences of the key difficulties. These mood and behaviour

changes can then impact the quality of their interactions that can have detrimental effects on all relationships within marriage, professional, school, and social interactions. Participants stated:

The general public and school staff are often unaware of [communication/attention difficulties post TBI]. Child labelled naughty, disruptive, rude, lazy and sometimes gets asked if they have a diagnosis of ADHD. (SLT)

The person is seen as less capable than they are, because these attentional aspects are related to judgemental concepts like “rude” “lazy.” (SLT)

Engaging in conversations about difficult or complex topics is a challenge that impacts relationships and interactions. There is variation in how individuals interact and communicate, and this is usually supported by the foundation of strong cognitive abilities, which can be compromised following TBI. When difficult conversations are handled poorly, this results in both parties feeling unheard, for example

Confrontations with others due to the person with TBI not being able to attend, comprehend and respond appropriately to a conversation/situation. (SLT)

The breakdown in communication also occurs when the person with TBI is unable to process the subtle nonverbal cues within a conversation. This results in the communication

partner taking on a supportive role during an exchange. Participants commented on how this can

impact the person’s self-monitoring and behaviour as they haven’t been able to pick up on another person’s cues telling them to stop that behaviour, tone it down, let them know it’s not appropriate in that situation. (SLT)

Finally, professionals reported mood changes as a direct result of the lack of social interactions. These included increased frustration, depression, and feeling of failure with lack of confidence on the part of the person with TBI.

Connections. This theme includes subthemes related to social relationships and the specific linguistic breakdowns that occur within conversations, such as missing the point.

Making connections with others is an attribute that provides meaning and quality to an individual’s life. The effect of difficulties related to attention and communication is to render a block in this meaning-making.

Survey participants reported relationships were negatively impacted by attention and communication deficits. This included losing connections, difficulty maintaining

connections, and struggling to make new connections. Loss of friends was reported to be a result of individuals with TBI isolating and withdrawing from relationships. Social isolation was also seen throughout most responses with varying reports of the effects on mood;

Long-term, communication and attention difficulties create barriers to participating in everyday activities and roles e.g., work, shopping, conversations, friendships.

(SLT)

The specific linguistic breakdowns that occur as a result of attention deficits include difficulty understanding the point of the conversation, misinterpretation of the verbal information, word retrieval difficulties, and the subsequent inability to participate in a conversation;

People will often have word finding difficulties and slurred speech when fatigued at the end of the day. Their communication symptoms are worse. (OT)

Without fully mastering attention skills, especially alternating and divided, the patient’s communication and cognition is affected. The patient has difficulty with word retrieval. (SLT)

Misinterpretation and poor auditory comprehension can also be a result of attention difficulties. The impact of not being able to follow a conversation or leaving the conversation with a different message than what was intended is a frequent occurrence. Furthermore, interpretation of the nonverbal aspects of language, such as facial expression, can also be affected owing to attention difficulties. This has significant effects on the ability to connect with others when individuals are not understood. Participants reported

difficulties with processing and understanding nonverbal information such as facial expression, sarcasm and other factors that are sort of “reading between the lines.”

(SLT)

The quality of relationships is another layer where communication breakdowns contribute to isolation and disconnection. Professionals stated that people with TBI have difficulty with social interactions and struggle to contribute meaningfully to the relationship.

They reported reduced satisfaction in family and marital relationships, with breakdowns in meaning, and an increasing number of arguments. Friendships were also reported to

experience an increase in breakdowns, with difficulty in sustaining the relationship, as well as finding the relationship stressful. Professional or work relationships were reported to be similar with breakdowns in meaning and understanding occurring. In relation to family relationships there was

Reduced relationship satisfaction – person with brain injury may need specific training to ask their partner how they are and to listen to the response e.g., at the end

of the day when partner comes home from work. (Clinical psychology/

neuropsychology) and

Negative impact on relationships due to communication breakdown, difficulty making new relationships, problems with family and caregivers, etc. (SLT)

More widely,

Generally, in the community or in friendship groups with acquaintances, this would not occur, others would just withdraw from the person as they make them feel

uncomfortable. The person with a TBI then becomes more and more socially isolated.

(SLT)

Self. A related theme involves aspects of self-awareness and self-reflection, including perspective-taking and rigid and concrete thinking styles, and the effects these can have on communication. These abilities are part of the cognitive ability of executive functioning, of which attention is also a key component. A participant stated that

if one’s attention is impacted when communicating it can negatively impact their ability to process information, remember information, hold onto information, and can influence their executive skills (decision making, problem solving). (OT)

This theme also involves the lack of self-confidence and changes in personality that can be seen following TBI, which affect overall confidence, such as “loss of confidence in social situations” and “stressors in interpersonal relationships due to communication difficulties.” Key components to finding a sense of self involve a level of self-reflection and perspective taking such as “[poor] perspective taking, concreteness, and self-reflection”

(SLT).

Purpose. This theme has to do with returning to life roles related to working, studying, learning, and progress with recovery/rehabilitation. Progress and success in

rehabilitation and recovery following TBI is one of the early yet constant challenges

presented to people following their injury. Attention and communication difficulties have an impact on a person’s ability to fully participate in therapy sessions. One participant identified the challenges of being

unable to participate in physiotherapy (follow instructions correctly) to complete a task or getting frustrated and choosing not to participate, therefore not reaching physical potential. (Physiotherapy)

Attending to a listener’s message, their facial expressions, and recalling details or stories within conversations supports meaning making during social exchanges. The ability to remember names, faces, routines, and responsibilities all relate to a sense of purpose and overall quality for each interaction. Recall and adapting to changes or utilising new strategies can also be a challenge when returning to work or study. Participants mentioned

difficulty with memory and learning new things- requires a different strategy/rehabilitation technique. (OT)

disorganisation and apparent “memory” problems impacting employment. (SLT) Returning to work or study was reported as difficult by a large number of

respondents, indicating that attention and communication difficulties have a negative impact on return to work and study. The challenges were initially returning to work following a TBI and then a struggle to maintain employment owing to the demand on multitasking and the need for clear and concise communication. Attending to verbal information and then accurately recalling this information were seen to affect both employment and return to school. Comments included

negative impact on work/education. Learn new information and tasks more slowly, inability to work as quickly and efficiently as others, not able to work in a busy environment. (SLT)

difficulties continuing with jobs, in particular those that have a strong emphasis on clear and concise communication and recall of what has been discussed i.e., Principal. Struggle engaging in classroom learning and making progress with learning areas. (SLT)

Empowerment. This final theme acknowledges the autonomy and the role

independence has on a person when requiring support both through others and also within a legal context as a result of attention and communication difficulties. Professionals identified that individuals following a TBI who present with attention-related communication

difficulties experience increased barriers to independent living and thus rely more heavily on caregivers to support their involvement in previous roles. Comments included “long-term, communication and attention difficulties create barriers to participating in everyday

activities and roles, e.g., work, shopping, conversations, friendships(SLT). Participants also indicated significant burden and stress on caregivers because of these issues. Deficits related to resuming previous roles or the ability to establish new ones was something that

participants felt was related to the quality of life for the person with TBI. One role reported throughout the responses was the need for formal support within a legal context.

Professionals said that people with TBI needed support with administrative and guardianship orders because of their cognitive (attention and communication) deficits, in addition to being at risk of participating in such formal exchanges because the information could be

misinterpreted. Comments included

difficulty understanding complex information in the community is a big problem.

There is an assumption that a person can generally understand information given to them without consideration being given to whether that information could be

simplified or whether assistance in understanding is required. (Case Manager)

Third- party disability, becoming vulnerable to being taken advantage of, getting in trouble with the law. (SLT)

Participants also stressed the invisible nature of a TBI, where the person appears to be independent but instead struggles to access appropriate medical/social support because of attention and communication difficulties. Again, this was reported to result in long-term reliance on carers and higher carer burden, for example, “limited/lack of support in community for ‘walking wounded’(SLT).

The outcomes of attention and communication difficulties were not seen as an isolated challenge in a single skill set but were related to all aspects of living and “impacts

significantly on social development, networks and overall quality of life” (OT). The five themes support this concept, where difficulties were far-reaching, from specific constructs of social interactions to maintaining or finding employment. Participants specifically stated that attention and communication difficulties “affect all aspects of life” (SLT) and “cause general errors in all levels of functioning” (OT).

Discussion

This study has highlighted the need for all clinicians working within TBI to understand that focusing on attention-related communication deficits at all stages of the recovery journey is crucial to improving the lives of individuals post-TBI. The literature supporting each of the themes will be discussed. The themes generated capture the relevant and current opinions within neurorehabilitation practice, regardless of where the clinician’s practice was. The clinicians reported how important it is for everyone to understand that having attention and communication deficits is more than simply people losing focus on a task and going off-topic within conversations. These deficits have consequences over time that result in multiple factors that diminish all aspects of their life.

Behaviour

Neurobehavioural sequelae of TBI are significant, long-lasting, far-reaching and impact the overall quality of life (Koskinen, 1998). Symptoms of attention, memory, aggression, and depression are reported to be problems by both family and the person with TBI, with the family reporting more difficulties with aggression, depression, anxiety, and overall mood compared to the person with TBI (Hart et al., 2003; Ponsford, Downing, et al., 2014). Other forms of behaviour, cognition, and communication difficulties that are present up to 10 years post-TBI have been an increase in irritability, cognitive fatigue, impulsivity, self-centeredness, and overall inappropriate social behaviour (Ponsford, Downing, et al., 2014).

Connections

These deficits can slowly degrade the quality of interactions and result in a significant role change within work, school, marital relationships, friendships, and belonging in a social group (Dahlberg et al., 2006; MacDonald, 2017). Throughout different phases of recovery, such as in the community, the focus on the cause of the problem is sometimes not as important as its outcome(s) or how it is showing up for the person with TBI or relating to overall communication competence (MacDonald, 2017). However, clinicians have indicated that there is a real connection between attention difficulties that contribute to problematic interpersonal communication behaviours, and that this then has detrimental impacts for that person in areas of connecting with others; specifically, poorer social communication skills are associated with reduced social integration (Dahlberg et al., 2006). The inability to maintain relationships and become socially isolated increases over time following the TBI. This is also seen in the person with TBI requiring more relational support across all relationships

(Ponsford, Downing, et al., 2014).

Self

The impact on the self-confidence of the person with a TBI is reported by the

clinicians to be a result of struggling with awareness of ineffective communication, inability to take others’ perspectives, and difficulty being aware or self-monitoring social interactions.

This has a direct effect on meaning-making and reconstructing a sense of self, especially through felt experiences of social activity (Gracey et al., 2008).

Purpose

Finding meaning in life can also be determined by being able to return to work or study, having financial independence, a sense of purpose, and contributing to society as a whole (West, 1995). Return to work and study can be affected because of the inherent cognitive and communication deficits present (Isaki & Turkstra, 2000). A proportion of individuals can return to their preemployment/study status following the injury, however, a large majority struggle to return to and then maintain their employment and/or study (Colantonio et al., 2009; Ponsford, Downing, et al., 2014; Rietdijk et al., 2013).

Empowerment

The final theme acknowledges the need for support from others, which can impact the person with TBI’s feeling of competence and ability to return to their previous life roles.

Guardianship and the support from others with financial responsibilities, accommodation, and overall decision making are required because of the cognitive and communication

impairments present (Colantonio et al., 2009; Ponsford, Downing, et al., 2014).

Clinical Implications

From the themes generated, there was a clear message from the health professionals that treatment must include and acknowledge the role attention has on communication-related interactions long term for individuals post-TBI. Attention should be targeted and focused on

throughout the journey of recovery to maximise outcomes in all aspects of life, particularly within relationships, education, and vocation, redefining a sense of self and behaviour.

Rehabilitation programmes within both acute and community phases following TBI are encouraged to incorporate and prioritise these crucial aspects into their programmes and support long-term funding of the following five treatment areas:

1. To support people following TBI in dealing with complex communication interactions such as arguments, persuasive discourse with attention awareness, and formal legal communications.

2. To apply attention-related strategies while focusing on linguistic features of word finding, auditory comprehension, and overall discourse (Sim et al., 2013).

3. Focus on friendships. To target and explore why friendships are not present and how to best establish friendships and connections with others. In addition to breaking down the interpersonal skills required to support and maintain good friendships (Bertram et al., 2020; Dahlberg et al., 2006; Douglas et al., 2015).

4. Focus on relationship support through counselling and communication partner training to improve the efficiency and quality of relationships over the recovery duration. This acknowledges the emotional and neurobehavioural changes that have an impact on the quality of life for both the person with TBI and their family

(Koskinen, 1998).

5. To redefine and acknowledge the person’s new self and employ self-reflection strategies that allow for improved awareness, growth, and responsiveness to the change of personality, lifestyle, or personal circumstances.

Limitations

The authors acknowledge that the information presented here is only from one

perspective within the team of the TBI journey. The person with TBI and their family offers a

more holistic picture of the true impact of attention and communication deficits long-term following TBI. Further research, including their perspectives, is highly recommended to build a more cohesive picture of the impact of attention and communication difficulties post-TBI.

Another limitation of the methodology is the construction of the question asked; it provides a powerful voice for clinicians but does not convey the specificity of a single case, rather a general interpretation of the concepts.

Conclusion

The nature of communication following TBI is complex, and this is seen throughout the health professionals’ perspectives. When attention difficulties are acknowledged as one of the sources of problems, then clinicians have greater insight into how to best focus their treatment. Current practice guidelines target components of both attention and

communication in isolation (Bayley et al., 2016; Cicerone et al., 2000; New Zealand Guidelines Group, 2006; Ponsford, Bayley, et al., 2014; Togher, Wiseman-Hakes, et al., 2014), but when considering the current practice-based evidence, these difficulties are not seen in isolation, rather they appear in multiple aspects of living following TBI. If these difficulties are not targeted and not understood as a collective difficulty by health

professionals, this will have detrimental consequences for individuals with TBI, leading to less meaningful and less fulfilling lives. Furthermore, understanding that attention difficulties appear in communication behaviours is an important aspect when improving connections with the self, friendships, and all relationships. Supports for individuals following TBI need to be far-reaching, from relationships to employment and navigating the formal setting of information exchanges with the community. Practice-based evidence provides a snapshot of the current issues that are relevant. Future research is required to amalgamate the evidence from the person with TBI and their family with the current perspective in order to fully understand how attention difficulties contribute to communication efficiency. Finally, for