Cognitive–communication difficulties (CCD) can arise as a result of TBI. These include difficulties with information processing for example, understanding implied or abstract content; problems with quantity, quality, relevance and cohesion of conversation; and problems with social communication such as difficulty recognising verbal or non-verbal cues.
Brain injury and CCD impacts both the individual and the people close to them. Family and friends often take on a significant part of the support for TBI survivors, but report feeling unsupported and unprepared themselves.
In a study published in 2020, Grayson and colleagues hoped to identify what family members perceived their needs to be in relation to supporting communication, participation and relationships following a TBI. The research group also explored whether existing services are meeting these needs.
The researchers asked four questions:
1. What do family members perceive as their most important information, training and support needs in relation to cognitive-communication disorders (CCD)?
2. Do family members feel their information, training and support needs for CCD have been met by services?
3. Does information, training and support need for CCD change over time?
4. What services would be beneficial to help meet family information, training and support needs for CCD?
To answer these questions, 102 family members of TBI survivors from the UK and Australia took part in an anonymous communication needs survey. Most participants were recruited from non-residential settings (85%), but a small number of service users from inpatient services, including BIRT, also took part (15%). Sixteen questions of the survey asked about specific needs and participants provided ratings to indicate level of importance on a four-point scale ranging from not important to very important. The survey also asked about the extent to which the needs had been met (met, unmet, partly met).
Results revealed that most respondents 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. Regarding the four main questions posed; the researchers found that:
1. The need for information about the long-term impact of CCD was rated as the most important by family members (95%), though needs for training on how to support their family member with conversations, relationships, social events and activities were also considered important by most (91-92%).
2. Information needs were the most likely to be met for family members, including information about how speech and language therapy could benefit families. However, a large proportion of family members (61 – 72%) felt that training needs were the least likely to be met.
3. The need for information about the long-term impact of CCD was consistently rated in the top three most important needs at all time points post-injury, suggesting that needs around CCD do not change significantly over time.
4. When given the option of selecting what they believed to be the most useful types of speech and language therapy, families selected written information regardless of how long ago the injury had occurred, with 73% of family members reporting that they needed support more than three years months post-injury.
The study also revealed that participants felt there was need for mental health support for the TBI survivors as well as the family members and that there is an ongoing need for services with specific knowledge of brain injury including, for example, counselling and conversation partner training and support groups with other family members who have loved ones with a brain injury of a similar severity.
The results of this investigation suggest that current speech and language therapy services need to be expanded to meet the needs of the relatives of individuals with cognitive-communication difficulties after TBI. However, the study also shows that these needs could be met by providing written information and communication partner training. The authors recommend that this should be available at various time points following TBI, and not just in the early stages.
In response to these findings, Jan McIntosh-Brown, Senior Specialist Speech and Language Therapist and BIRT’s Clinical Lead for Speech and Language Therapist said: “CCD occurs frequently following a brain injury and it can have a significant impact on relationships and vocational outcomes. It is becoming more widely recognised and understood. In BIRT, speech and language therapists are able to provide rehabilitation to support people, including the person with a brain injury, family members, friends and staff but more work needs to be done to ensure that this support is available more widely, including for those who are never referred to our services”.