Dealing with traumatic brain injury

Dr Christine Peta
Traumatic brain injury is one of the leading causes of death and disability, particularly for persons who are aged 45 and below (Caro, 2011).

Occurrence of traumatic brain injury in younger people is commonly caused by vehicle accidents as opposed to older adults who may acquire traumatic brain injury as a result of falling.
But what is traumatic brain injury?

It is an injury which is caused by outside forces that change the way that the brain works. The most common results of traumatic brain injury include memory loss, difficulty recognising what a person is seeing, problems with speaking or understanding speech, behavioural challenges such as anger and aggression, as well as difficulties with physical function and co-ordination (Kontos et al, 2012).

The occurrence of traumatic brain injury does not just affect the injured person, but it also affects the whole family, thereby damaging relationships and the way that responsibilities are shared in the home. Traumatic brain injury, therefore, comes with both direct and indirect implications.

Support is, therefore, required for not only injured persons, but their families as well.

Colantio et al (2011) states that in Canada, a patient who has traumatic brain injury requires approximately seven weeks of in-patient rehabilitation, after stabilising.

The purpose of rehabilitation is to enable the person to regain the ability to take care of him or herself, to move from place to place and to be able to live independently.

The best-practice value of care in rehabilitation is that of client-centred-care which is rooted in the principle of allowing the patient to make independent choices and to negotiate about issues that pertain to his health and well-being.

However, much as the client-centred-care approach promotes the concept of a partnership of the health care practitioner and the patient, in which a patient is allowed space to make decisions and to set goals in partnership with the health care practitioner, the reality is that barriers often exist in daily clinical practice.

Therapists often feel uncomfortable with scenarios which threaten their ability to portray themselves as superior health care knowers. Such an approach ignores the fact that patients are experts of their bodies, hence they know more about their bodies than the health care practitioners.

A 2012 study by Kontos et al revealed that health care practitioners are often unwilling to provide persons with traumatic brain injury and their families with the information that enables them to make appropriate decisions.

As such health care practitioners may use jargon which fails to accommodate the slower processing of information by persons with traumatic brain injury, let alone their families who may not have been injured.

For example, in attending to a person who was being discharged from hospital after treatment for traumatic brain injury one health care professional said “your ADLs are independent and you shower with set up”.

The professional felt that the non-use of jargon would take away her power and the chance to prove her knowledge base as a trained professional.

Yet by ADL the occupational therapist simply meant “activities of daily living” and by “shower with set up”, she meant “help that is required with toiletries, adjusting water temperature and the adjustment of the shower seat.”

But how is a patient supposed to understand such jargon if it is not explained?

In some instances some health care professionals come in and have discussions with a person with traumatic brain injury using as many as 15 big words and then they leave (Kontos et al, 2012).

In some instances nurses report that they have to be hard on patients in order to avoid being sympathetic and shedding tears.

One nurse said she doesn’t want to really know about the patient’s life because she wants to protect her own emotions.

Hence she would rather not know that the woman who she is attending to, and who cannot even brush her own teeth after traumatic brain injury is a divorced mother of three young children who are at home.

Some practitioners also said that they would rather not know the background issues because they may end up being biased in treatment and judging patients, particularly in cases where the traumatic brain injury is drug-induced.

A practitioner may think that “this is a person who has just ruined his or her own life” with drugs so there is no need to pay much attention to the patient.

Rehabilitation focuses on the traumatic brain injury and the prevention of additional complications, thereby ignoring the family.

One healthcare practitioner said that there was no need for him to worry about the family because the family is not his patient; the practitioner felt that some families may actually cause problems by interfering with treatment.

For example, a wife may say she wants to be discharged from hospital, and a husband may say “why are you discharging her, keep her here for a few more weeks”. (Kontos et al, 2012)

The challenge is that family members are rarely provided with appropriate information or preparation to take over the care-giving role from the hospital or rehabilitation centre.

Families and communities may find it difficult to deal with challenges that may arise like aggressive behaviour and outbursts, hence they may plead with the rehabilitation centre to keep the affected person for more days or weeks against his or her will.

Families often worry about interacting with a person who has suffered traumatic brain injury in the immediate post-discharge period, when healthcare professionals “disappear” at a time when the family is coming to terms with the outcome of the traumatic brain injury at home.

Whichever way, health care professionals should refrain from using medical jargon when dealing with patients with traumatic brain injury and their families but they should instead use what Kantos et al (2012) refer to as simple “living room language.”

The traditional use of medical terminology disempowers clients and undermines their participation in the making of decisions that affect them and their lives.

However, some practitioners defend the use of jargon by saying that it helps them to uphold the principle of confidentiality when talking about a person’s health condition in shared wards or corridors.

But honestly telling a person with traumatic brain injury that they have suffered damage in the “premotor cortex which may led to ataxia and that they may suffer from Broca’s aphasia” does not make sense.

Health care practitioners should instead make an effort to include families in information sharing, they should be sympathetic and respectful of the challenges that families encounter as they go through the healthcare system and seek re-integration of their loved ones into the community, outside the clinical zone.

By the end of the day, the whole point is to establish a meaningful partnership which works towards preventing additional complications and disabilities that may arise from traumatic brain injury.

 

Dr Christine Peta is a public healthcare practitioner who, among other qualifications, holds a PhD in Disability Studies. Be part of international debate on how best to nurture a society which is more accessible, supportive and inclusive of disabled people on e-mail [email protected]