Pragmatic - and discourse problems after severe traumatic brain injury from the perspective of caregivers

Abstract

Background: Pragmatic and discourse problems after severe traumatic brain injury may have a negative impact on communication interaction. Caregivers are in a position where they observe these problems and have to deal with them. According to the International Classification of Functioning, Disability, and Health framework (developed by the World Health Organization, 2001), communication interaction problems due to impaired physiological and psychological functioning after severe TBI will influence performance and participation in everyday life situations.One of the main objectives of speech-language therapy services is to optimize individuals’ ability to communicate in natural environments by serving individuals, families, groups, and the general public. Due to limited health care resources in South Africa, the Department of Health (DOH, 2001) implemented a home-based and community-based care programme. With this programme patients can be discharged sooner from in-patient rehabilitation into the care of family caregivers, thereby eliminating redundant facilities and services to reduce costs. Speech-language therapists can make a meaningful contribution to the implementation of the home-based care programme in South-Africa by empowering caregivers and family members of individuals with severe TBI with practical recommendations to improve communication interaction. Information on how caregivers experience and manage communication problems may better equip speech-language therapists to provide guidance to caregivers in the future. Aims: The main aim of the present study was to determine the nature of pragmatic and discourse problems encountered during the chronic stage after severe TBI, from the perspective of caregivers, and to examine their ways of dealing with such problems in a natural environment. The following sub-aims were formulated in order to achieve this main aim: - To determine how caregivers perceive the communication interaction of the individual with severe TBI they are caring for during the chronic stage after TBI. - To determine how caregivers deal with the communication interaction problems they observe to assist the individual with severe TBI to communicate more effectively in a natural environment. - To deepen the understanding of these findings by reflecting on the data gathered during semi-structured interviews, particularly with regard to caregivers’ ways of managing the communication interaction problems they observe and what recommendations they propose for managing these problems. Method: To obtain the requisite information on how caregivers perceive and deal with pragmatic and discourse problems of individuals with severe TBI, the research project was carried out in two phases. A qualitative approach was used during both phases. During Phase 1, semi-structured interviews were conducted to determine the nature of the pragmatic and discourse problems during the chronic stage of severe TBI, from the perspective of the caregiver, as well as to ascertain how they deal with these communication problems. Based on a range of published assessment tools, a semi-structured interview guide was developed and face-to-face interviews were conducted with ten caregivers of individuals with severe TBI. Thematic analysis was used during data analysis and processing. Phase 2 involved a focus group discussion with six of the participants of the semi-structured interviews. The participants included spouses, mothers, and siblings acting as caregivers of the individuals with severe TBI. A focus group discussion guide was developed as an agenda for conducting the discussion. The three key questions of the focus group discussion were based on the data collected during the semi-structured interviews. A successive process of coding was followed during data analysis. The process of coding involved open coding, followed by axial coding and then selective coding. Results: The results of Phase 1 identified the communication interaction problems perceived by caregivers. These problems included inadequate content of information being conveyed during conversation, a lack of pragmatic competence, and decreased integration into the community. According to the results, caregivers choose to deal with perceived communication interaction problems in different ways. Caregivers either make the individual aware of the problems by addressing the problems, or they choose not to make the individual with severe TBI aware of the problems in order to avoid certain negative behaviours. The results of Phase 2 yielded recommendations for dealing with communication interaction problems. Recommendations included different approaches to making the individual with severe TBI aware of communication interaction problems. These included subtle approaches vs addressing the problem directly, and addressing the problem within the conversation or afterwards. The overall best approach could not be determined during the focus group discussion because each participant had a different motivation for using a certain approach. A possible explanation for this may be that the participants of the focus group discussion stood in various relationships to the individuals with severe TBI. The results also provided some insights concerning the decreased capacity of individuals with severe TBI to use and interpret pragmatic aspects of communication interaction. Responses of the participants during the focus group discussion regarding these aspects of communication gave the impression that the participants did not understand the full extent of these behaviours and did not know how to deal with them. The results further showed that caregivers do acknowledge the importance of community reintegration, although they are very unsure what exactly the process involves and how to address it. Conclusion: Caregivers perceived pragmatic and discourse problems during interaction with individuals with severe TBI. The perceived communication interaction problems can influence relationships negatively. Caregivers have different ways of managing the communication interaction problems, while an important shared consideration was the need to maintain good relationships and also to protect the self image of the individual with severe TBI. Caregivers did not fully comprehend the concept and manifestation of problems in the following areas: non-verbal communication behaviour, and the potential influence of a conversation partner or the context of a conversation. They were also not fully aware of the importance of community reintegration and strategies for enhancing this process. It is a primary role of the speech-language therapist to treat the communication problems associated with the severe TBI, but also to educate caregivers and family members involved with these individuals. Preliminary guidelines for assisting caregivers and family members in managing pragmatic and discourse problems during the chronic stage of TBI are proposed.