Traumatic brain injury (TBI) patients’ post-acute rehabilitation : the experience of family members

Abstract

A traumatic brain injury (TBI) is what its name suggests: an extremely traumatic event that affects the most supremely powerful but fragile organ that controls all our bodily functions and holds the essence that makes individuals unique. Some patients with a traumatic brain injury will recover without realising what the effect could have been and others will be left with effects that will last throughout their lives. “Many sufferers will remain severely incapacitated and a lamentably large number will become part of the statistics on the mortality after TBI” (Burns, 2008a:76). The impairments that an individual faces after a TBI will be dealt with in an acute rehabilitation setting. Significant emotions are experienced by patients with a traumatic brain injury. The researcher believes that this emotional reaction is also experienced by the family members. The event may be even more devastating to the family members, because of the impaired cognitive functions of the injured person. Ross and Deverell (2004:36) state that when individuals are diagnosed with disabling conditions, they experience strong emotional reactions. “Feelings of grief, anxiety, inadequacy, anger, guilt, vulnerability and confusion are some of the more common emotions that clients and their families experience when they encounter a disability in themselves or a family member” (Ross and Deverell, 2004:41). After a traumatic brain injury the patient is usually admitted to an intensive care unit (ICU). Once medically stable and able to participate in an active rehabilitation programme, provided this is authorised by the patient’s medical aid, the patient is transferred to a rehabilitation unit. While in ICU, the outcome is very uncertain and the the family often receives very limited support. Patients are often in a coma and unable to communicate. In working with TBI patients, the researcher found that family members receive very limited support, education on the condition and feedback on the patient’s medical state from team members, and therefore become very anxious when the patient is eventually transferred to a rehabilitation unit. In this study, the researcher focused on the family’s experience from the time of the patient’s admission into ICU until discharge from rehabilitation. During the rehabilitation process, family members are encouraged to support their family member in the rehabilitation unit. This is often very difficult for them, as it entails being confronted with reality and the often devastating impact of the injury. The focus of this study is on the experiences of family members while the patient with a TBI is in hospital and in the rehabilitation unit and the challenges they face. The researcher strove to understand the experiences of family members of patients with TBI, from ICU through until discharge from acute rehabilitation. The goal was to explore the experiences of adult family members of the traumatic brain-injured person in post-acute rehabilitation. The research question was: What were the experiences of adult family members of the person with a traumatic brain injury (TBI) during post-acute rehabilitation? A qualitative approach was used in this study, with a collective case study research design. The population for this study was all the family members of patients who underwent rehabilitation as a result of traumatic brain injury in the Life Eugene Marais Hospital, Pretoria, Gauteng. In this study purposive sampling was used to choose participants who were family members of TBI patients. The criteria for sampling of family members as participants were as follows. The patient <ul> <li> had suffered a traumatic brain injury;</li> <li> had undergone acute rehabilitation at Life Eugene Marais Hospital for the last four years;</li> <li> had completed rehabilitation, in other words had to be post discharge;</li> <li> lived in the province of Gauteng; and</li> <li> was able to speak and understand English or Afrikaans, irrespective of gender, race, religion, culture or age.</li> </ul> Eight participants who were family members of eight TBI patients were chosen for this study. Semi–structured individual interviews were conducted with participants. Interviews were voice recorded with the permission of the participants and were transcribed by the researcher. The data were analysed by the researcher and the themes and sub-themes generated from the data. The research findings were presented by providing a profile of the research participants and then presenting the themes and sub-themes, including literature control and verbatim quotes from the transcriptions. The themes included the following: Theme One – Understanding of TBI; Theme Two – Period of hospitalisation; Theme Three – Family members’ emotional experience of TBI; Theme Four – Period of rehabilitation; Theme Five – Period post discharge; Theme Six – Support systems; Theme Seven – Effects of TBI and Theme Eight – Future. The conclusions of this study are that traumatic brain injury (TBI) is experienced as severe trauma by family members, who struggle to cope not only initially but especially once the person is discharged and has to be cared for at home. In the long term this experience leads to changes in the family regarding structure, roles, functioning, relationships, communication, finances and social life. Recommendations in this study can be used by the multidisciplinary team to better understand the needs and experiences of the family members of TBI patients and by social workers to improve their intervention and support to these families.