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

ABSTRACT

Primary Objective: To identify how families experience cognitive-communication difficulties following Traumatic Brain Injury (TBI). Experiences of information, training and support for managing communication changes were also explored. Research Design: Qualitative focus group methodology using thematic analysis. Method: 15 family members of individuals with cognitive-communication difficulties following severe TBI participated in the study; four parents, six spouses, three siblings and two 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 were transcribed verbatim and analyzed 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: Cognitive-communication 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.

KEYWORDS:

• Traumatic brain injury
• cognitive-communication difficulties
• family experience
• focus groups
• service provision

Acknowledgments

The authors would like to acknowledge and thank the family members who participated in the focus groups which informed this research.

Declaration of Interests

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

Data availability statement

The data that support the findings of this study are available on request from the corresponding author, [LG]. The data are not publicly available due to their containing information that could compromise the privacy of research participants.

Ethical Approval

NHS ethical approval was sought via the Integrated Research Application System (IRAS project number 260,091) and granted by NHS West Midlands- Black Country research ethics committee (reference number 19/WM/0072).

Orchid

Leanne Togher https://orcid.org/0000-0002-4518-6748

Marian Brady http://orcid.org/0000-0002-4589-7021

Myzoon Ali https://orcid.org/0000-0001-5899-2485

Appendix 1. Focus Group Topic Guide

Introductions and setting the scene:

Facilitators will support introductions among focus group members and will provide housekeeping information;

• Length of group, refreshments and breaks

• Location of toilets, arrangements in the event of fire

• Role of facilitators specifically explaining role of facilitator two as note taker/observer

• Recording equipment set up and check consent to make sure everyone is happy to proceed

If yes, the recording equipment will be switched on and checked to ensure it is working.

Facilitator 1 will introduce the purpose of the group with a short definition of cognitive-communication difficulties and summary of the findings from part 1 of the project.

Facilitator 1 will ask participants about their experience of cognitive-communication difficulties with the brain injury survivor using the following open question:

• “What difficulties have you experienced when having conversations with your family member in the last month?

This will be followed up with the following probing questions:

• “How does this impact upon your relationship with your family member?”

• How does this impact upon your ability to take part in social activities?

Facilitator 1 will ask participants about how they feel about current service provision in relation to information and training for cognitive-communication difficulties by asking the following open question:

• How do you feel about the information and training currently provided to family members for cognitive-communication difficulties? Do you think it meets their needs?

Facilitator 1 will ask about the participants’ experience of receiving information about cognitive-communication difficulties and how this could be improved by asking the following open question:

• “How do you feel about the information you received about communication changes following brain injury?

This will be followed by the following probing questions:

• What do you think about the timing of receiving this information?

• What do you think about the delivery of this information e.g. one to one, with/without family member, group, just verbal/verbal and written?

Facilitator 1 will ask about the participants’ thoughts on receiving training for cognitive-communication difficulties by asking the following open question:

• “How do you feel about receiving training to help your family member manage their communication changes following brain injury?”

This will be followed by the following probing questions:

• What do you think about the timing of this training?

• What do you think about how this training could be delivered e.g. one to one, with/without family member, group, just verbal/verbal and written?

Facilitator 1 will then bring the focus group to a close by asking the participants if there are any other points they would like to add. Facilitator 2 will explain what will happen next with the project in relation to analyzing the information, member checking, feedback and future steps.

Additional information

Funding

This work is part of an MPhil qualification, undertaken by the first author, which was funded by NHS Lanarkshire.