Creating a support group for Traumatic Brain Injury (TBI) caregivers might help to ease the emotional strain they experience and provide hope, information, friendship, sharing, self-advocacy, problem- solving skills and opportunities for personal growth. The first part of the article details intense rehabilitation programme after brain injury.
Are there any broad guidelines or tips for family and friends supporting someone with a traumatic brain injury (TBI) in the near, medium and long term time frame?
There are several guidelines or tips available for family and caregivers having pertinent information on how to handle TBI patients at different stages of treatment and rehabilitation. Brain injury information handbook of California Pacific Regional Rehabilitation center contains useful information on the subject and can be downloaded from www.binba.org. Carolyn Rocchio national advocate, author and speaker in field of brain injury put the tips and guides on TBI in very simplistic and informative way for family and caregivers and can be accessed from Brain Injury Association of America’s site.
It cannot be stressed enough that the most important members of the interdisciplinary team are the patient and his or her family. Both the patients and the family’s lives are likely to be dramatically changed as a result of the injury. Familial roles may change. The patient who previously took care of the children may now be on the receiving end of care. The team must garner information regarding the patient’s work, school, financial status and social history. Family members should be questioned to obtain information on the patient’s lifestyle, favourite hobbies and other likes and dislikes. Information about the family lifestyle should be ascertained. Who is the head of the household? Who is the breadwinner in the family? Is the patient responsible for taking care of the children? What grade is the patient in? Is the patient in college or working full time? All of these and many other similar questions should be answered to develop a comprehensive plan of care.
Education is another essential aspect of care that should begin as soon as possible with the family and patient, when appropriate. The great majority of lay people are unaware of the implications of a brain injury. They may think their loved one will wake up from a coma and return to his or her previous lifestyle with little difficulty, like in a television movie. Unfortunately, this is rarely the case. It is the job of the entire interdisciplinary team to begin educating the family and the patient about the effects of a brain injury and a long, arduous road to recovery. The family should be introduced to the Ranchos Los Amigos LOCF Scale (describes the cognitive and behavioural patterns found in brain injury patients as they recover from injury) and what to expect at different stages. It is often beneficial to provide educational material for the patient and the family. The physical therapist should begin education on the basic components of care such as how to perform passive range of motion (PROM), to more complex issues, such as why spasticity develops and how the brain controls movement. Family members often ask if the patient will return to a normal life or how much function he or she will regain. During the initial stage of recovery in the acute hospital and acute rehabilitation hospital, this question is difficult to answer. Every patient recovers differently and at different rates. An effective way to help answer family questions and concerns is through education.
What is the best way for patients and families to access the different expert needed for rehab?
As mentioned, the foundation for successful rehabilitation of the patient with a brain injury is an interdisciplinary team. No one person could possibly have the knowledge and skill necessary to treat all aspects of a brain injury. An interdisciplinary team approach is essential to providing the most comprehensive care that will lead to maximizing the patient’s functional recovery. Although most research conducted in this area is not controlled, an interdisciplinary approach to rehabilitation for this population has been shown to be effective for improving function and participation in society. For the access of the interdisciplinary care one should look for community base setting or neurorehabilitation centre after hospital discharge. The interdisciplinary team for TBI Rehabilitation require following health professionals:
a) Physician
b) Speech language pathologist
c) Physical therapist
d) Occupational therapist
e) Rehabilitation nurse
f) Case manager/Team coordinator
g) Medical social worker
h) Neuropsychologist
i) Other team members: Respiratory care practitioner, recreational therapist
There are various challenges that the family members face when caring for someone after brain injury, especially in critical cases, are there any intervention or counselling programmes to manage the psychological health of family and caregivers?
A systematic review cited here give a detailed insight about the health impact on family and primary caregiver of TBI patient. Several Studies have documented that family members have experienced various difficulties such as anxiety, financial hardship and social isolation, and these challenges have affected their ability to provide adequate care for TBI patients. Moreover, the recovery process for TBI patients is time consuming and requires the family to provide an efficient system in managing the patient to aid the healing process.
The task as primary caregivers to TBI patients requires some medical and nursing knowledge and skills including adequate knowledge and information regarding the illness, the treatments and the patient behaviour. The primary caregivers of TBI patients need to equip themselves with information related to treatments and nursing methods and must be aware of any available financial aid and emotional and social support that they are able to access. But to prepare and provide for the patient’s needs, the family needs to fulfil their own needs and necessities.
However, most of them tend to neglect their needs as they are burdened with the challenging task of taking care of the TBI patient. Having a supportive environment could help caregivers in providing quality care for their TBI family members. Thus, creating a support group for TBI caregivers might help to ease the emotional strain they experience. Support groups may provide hope, information, friendship, sharing, self-advocacy, problem- solving skills and opportunities for personal growth. Ryan KM. “The self-reported needs and reflections of caregivers of brain injury survivors”. Minnesota: St. Catherine University; 2014 in his study showed that 78% of respondents who consisted of caregivers to TBI patients stated that participation in the support group helped to reduce the burden of care.
At IHIF we have such support groups and peer mentors who share their experiences and journey of rehabilitation with our new patients, their family and caregivers. Such meetings help them to learn about constructive coping strategies that are being used by other families in caring or nursing for their family members diagnosed with TBI. In this regard, medical institutions can provide talks and courses on how to take care of these patients. Research indicated that caregivers with limited support will be challenged with physical and mental health burdens. Therefore, health professionals need to play their role in aiding the family to attend to their social functions alongside their nursing obligations in order to enhance the caregiver’s social functioning and well-being. Several government-based agencies, especially the medical social work departments in hospitals and related non-governmental organizations (NGOs), continue to provide appropriate training related to coping strategies for TBI caregivers. Improving caregivers’ support reduces the caregivers’ burden, thus helping their mental health which helps them with the quality of the informal care that they provide to their family members diagnosed with TBI.
