Common consequences of a Brain Injury

As it is common for majority of the cases, the brain injury causes not only isolated deficits such as physical handicap, but leads to a complex limitation that combines most of the following deficits in a different extent. The most frequent, as respondents themselves identify, include: cognitive and executive functions disorders (memory disorders, attention deficit disorders, disorders of planning, initiation, decision making, organizing, judgement); physical and sensory functions (physical handicap, paralysis, losses and disorders of sensibility, touch, smell, sight, hearing, balance disorders, inclination to fatigue); speech and communication disorders (aphasia, dysarthria); behaviour and emotional changes (state of remorse, irritability, weakened ability to control emotions, depression, aggressiveness etc.). Respondents state their whole personality has changed after brain injury. It is evident from their statements they perceive the consequences of the injuries as difficult to recognize, “invisible”, problematic especially in the communication with other people and their understanding the troubles the disabled have; during rehabilitation (when their handicap is not visible it is difficult to demand rehabilitation; concerning availability of certain services and assistance (when dealing with officers not aware of their problems).
After brain injury or cerebrovascular accident (i.e. stroke) the way of life of all respondents takes a complete turn, especially at fields such as work, interpersonal relationships, family, rehabilitation, discrimination.
Work is a very important part of respondents’ lives. This doesn’t necessarily mean the work in its true sense; this rather implies looking for a new direction and new role. Most of respondents lost their original jobs. The main reasons were, as they stated, their disability to handle it right after the injury, or termination of the position during their rehabilitation. Most of respondents had to cope with the consequences in their everyday lives, than tried to figure out their work possibilities. Almost 70% of respondents remained disabled or partly disabled with no grade after the brain injury, receiving disability pension. There are two reasons respondents have been bringing in. First, it is naturally the income, an “extra” for their budgets; however, many respondents talk specifically about a need “to be somehow useful”. Therefore, work is important for people with ABI not only in a financial sense, but also and especially because it helps improve their mental state. The respondents that used to have good jobs and liked their jobs say it was not easy to accept the fact they wouldn’t be able to perform their jobs anymore. The sphere of job grades needs to be further elaborated. Exploring possibilities and options of employing people with ABI, and will of employers to employ these people would be very interesting.

Social support and interpersonal relationships after brain injury
It is the family providing respondents the biggest social support, often ensuring the rehabilitation and other services available. Without an exception respondents confirm the family has been their biggest support.
Respondents experienced changes also in their partnerships, some of them led even to a divorce. It is clear from the respondents’ statements their partners did not mind the injury itself and its usual consequences. On the contrary, during the time of rehabilitation these people were the biggest support to respondents, but the problems and queries that revealed after respondents’ returning home from hospital were a big deal. Some respondents identified the changes in their personalities after returning home from hospital (higher emotional unstableness, lower level of patience, short-temperedness, fatigue, etc.) as the reason for the divorce. Then, these respondents relied on their families, in a financial, practical and psychological sense. Siblings too are frequently named as an important support. In general, on one hand, the original family has helped the people without a partner or after divorce. On the other hand, the people not divorced and still having a partner consider him as the biggest support.
Respondents also refer to an “over-care” on the part of family and them being made incompetent by carers, which they perceive as uncomfortable and demeaning.
Changes in the interpersonal, work, partnership and personal relationships can be very significant when talking about people with ABI. According to the interviews, it becomes apparent the original friendships of these people are now broken with only one or two friends left. This means in the most of cases friends were not identified as a support after the injury.

As they identically claim, these are the reasons for the loss of friends:
1.    Friends don’t know how to treat them. The reason can be a lack of information about brain injury; improving public knowledge might help.
2.    Friends wrongly assume the brain-injured are mentally disabled; this may be caused by the lack of knowledge about specific consequences of brain injury.
3.    Change in lifestyle; loss of the interests and topics they shared – this usually leads to alienation.
4.    Long rehabilitation often in a different, distant city; isolation of the rehabilitated patient; cooling of the relationships.
5.    Personality and behaviour change the people around don’t know how to react to.

Nevertheless, the brain injury was naturally followed by loneliness, hopelessness and helplessness everybody had to cope with. Respondents state they little by little found new friends. These are predominantly friends with an injury they met in rehabilitation facilities or other institutions they attended. Since their life has been “stable” these people can be divided into two groups. First, the people who have eventually coped with the consequences have not been having difficulties being surrounded by “healthy” people; they have been relatively positive and found a substitute role within the society. They consider their relationships as good. Second, those are the people who have “not coped with” the consequences of their injuries for a range of reasons (such as a doctor’s failure; denial of problems; no psychological help; low support from family, or vice versa its over-care). These people are expressly critical of the others, negative whilst trying to express they do not care about other people with whom they do not bother. Such problems come visible especially in the case of family relationships.
It is evident that people with ABI need psychological help (several respondents directly state they needed psychological help, but never get it) that would help them to cope with the consequences. Only a small percentage of respondents got psychological help. A wide range of respondents did not cooperate with a psychologist at all, even though their cognitive functions and “psyche” had been affected.
Transformation of personal and family relationships after ABI is another subject that would be worth examining. Getting used to and coping with changes of personal and family relationships is perceived as difficult by relatives rather than the people with ABI themselves.

Rehabilitation and service availability
The length of rehabilitation was referring to respondents from three weeks to six months. Generally, respondents did obtain rehabilitation, but that was mainly physiotherapy and other exercise. Fewer of them endured speech therapy. Few of them mention help from a psychologist and an ergotherapist. Only two respondents endured somewhat complete rehabilitation; this was possible thanks to the support and assistance provided by their families that took part in the rehabilitation process themselves and were able to gain access to various exercise thanks to various contacts. The rest of respondents not provided such a support by their families often had to wait to get a place at a rehabilitation facility several weeks or even months; there they endured first and foremost physiotherapy, and to a lesser extent speech therapy and further ergotherapy. Although more than 70% of respondents state changes or problems affecting cognition (especially memory disorders, attention deficits, information understanding failures) and mental state (mostly emotional unstableness, irritability, “sadness”) only a small percentage got methodical psychological help (around 20%). Although almost 50% of respondents have been suffering from reading, writing and counting disorder as results of a brain injury only 2% acquired appropriate rehabilitation performed by a special pedagogue. The respondents who had no significant physical consequences, but only “invisible” handicap and cognition disorder did receive no rehabilitation. Consequently, it is obvious according to the interviews that it has been the very difficulties affecting psyche and thinking that has been representing the most serious trouble and a significant obstacle for respondents once they try to resurrect their working and social role.
Only few respondents took advantage of another support and social services. Respondents usually doesn’t know what possibilities they have and where to find them (it is not standard for doctors to provide information about additional social services). Services they took advantage of were mainly short recondition stays, or services provided by institutions helping disabled people to find a job, also a club founded by Cerebrum (cognitive training, self-help group). Respondents got to know about these usually only by “chance”, several years after the injury. None or minimum of people outside of Prague took advantage of possibilities of protected living, attending day care centre, assisted employment or work rehabilitation. (Author’s note: Currently, there is no protected living or day care centre specifically focused on ABI people available in the Czech Republic.)

During the research we also focused on the issue of discrimination. Overall, respondents rather avoid this term regarding it too severe. Some respondents don’t even realise some behaviour discriminates them finding it normal, even though annoying. However, all respondents state they experienced an inaccurate or annoying behaviour. Only a small percentage of them reported within a survey research they experienced discrimination. But still, that is probably the result of the survey’s using of the term itself, since respondents are likely to regard it too severe as it has been already mentioned.
There are two fields within which respondents feel discriminated most often. First, it is the work field and job placement. It has been mentioned the most of respondents lost their original jobs. Returning back to the original job, looking for a new one or simply the behaviour of their colleagues and employers, they regard all of this very difficult. Second, it is “the attitude of the rest”, such as officers and doctors. Especially the approach of doctors, who, according to respondents, behave in a haughty manner, is usually mentioned. This concerns namely:
1.    conclusive judgment on their health condition, in general regarded by respondents as discouraging and, first and foremost, untrue;
2.    talking about them without them, but in front of them, which is perceived by respondents as very humiliating;
3.    insufficient knowledge of the issue, difficult access to the information.

All these three examples respondents usually encounter at hospital facilities indicate considerable “distance” between doctors and patients (an idea a doctor is here to treat patients and not to debate with them is still prevalent). Respondents distinguish between an approach of doctors in hospitals, for whom they are only a “piece of flesh”, and an absolutely different approach of doctors and experts in rehabilitation facilities, which they regard very helpful. Furthermore, respondents talk about tendencies of people surrounding them to make decisions for them and consequently turning them into passive receivers of care.
Another, but less frequent fields where discrimination also takes place are according to the respondents’ claims an approach of Labour Office; Medical Assessment Office evaluation; verbal bullying performed by schoolmates; inappropriate treatment on the part of psychologist, psychiatrist and general practitioner; public behaviour in public transport; denial of providing an individual curriculum at universities.
General knowledge about the issue respondents perceive highly insufficient. Very often they weren’t even informed what exactly had happened to them, what the possible risks were, what possibilities of rehabilitation they had, or what the general characteristics of brain injury are. Respondents acquired that information usually with a big delay from other institutions. Respondents also point out one has to be eager for knowledge and ask frequently to be even able to get any information. Moreover, respondents recognize they have not been properly informed about their condition and treatment possibilities. They usually don’t perceive the lack of knowledge discriminating, but most of them mention this subject. There is also an opinion stating that the lack of knowledge has been caused by respondent’s lack of curiosity (i.e. respondent’s fault). It is important to point out that part of respondents was severely disoriented after the injury and it was mainly the family who communicated with doctors. In the case of expanding the research it would be interesting to focus exactly on the experience of the family with the availability of the information provided by doctors.
Thanks to the progress in the field of acute medicine a bigger percentage of the injured survives, however, these remain severely disabled. Their families, deeply affected by this situation, are often due to this insufficient system of support completely isolated. Uneasy position of the injured and their families is affected not only by availability of information, appropriate rehabilitation, services and psychosocial support, but also by financial demands of care connected to swap in roles partners were used to play (a brain injury predominantly happens to men; losing a job, this duty is passed on the wives, who have to take care of and run their house themselves).
As the key issue, and thus very problematic can be perceived an absence or poor availability of some experts such as neurologists, ergotherapists, special pedagogues, speech therapists etc., who are essential for a successful returning of people with ABI into an everyday life. This absence becomes significant not only during aftercare and rehabilitation, but already during an acute phase, when an injured is still in coma.
An effective system of rehabilitation and care should follow legitimate needs of people who use it. There is no point to provide for example only physiotherapy, as it was common in cases of the most of respondents; the injured needs to practise reading, writing, count, speech and thinking, impaired as a result of the injury. Not only quality of provided healthcare, health & social care and social care patients and their families acquire after brain injury, but also interconnection, continuity and regional availability of the services embody the main determinants of a successful return and re-integration into working and social life and the overall quality of life after brain injury. Where services exist (the situation is naturally much better in Prague) they very often lack connectedness and continuity, qualities essential for people with ABI, especially right after injury, when the chances to rehabilitate damaged functions are much more higher. If an injured is not physically disabled, thence in a condition that would result in sending him to a rehabilitation facility, it often means he does not get any rehabilitation or support at all, even though he might have suffered a wide range of cognitive deficits, that do not allow him to gain back his job placement and social role.
In some regions there are no services for this target group available, therefore, the people with more severe handicap have to rely on psychiatric clinics for mentally disabled, that are not facilitated for treatment and rehabilitation of cognitive, sensory, emotional or physical deficits. Moreover, people after ABI usually do not suffer from a mental disorder and they might not even be mentally disabled. Because of this their return to an everyday life may become even more difficult.
The field of support of the families taking care of their relative, who is seriously disabled or rests after brain injury in coma vigil, has not been solved completely. According to our experience, Czech families get too often to a catch-22 situation, exhausted from 24/7 care and perpetual “fight” against authorities, insurance agencies, financial demands of such care and last but not least, emotional strain resulting from the situation. Respite care, day care centres and other support services are not available in many regions; this leads to common exhaustion of the families. Similarly, a domestic nursing and personal assistance are difficult to obtain in some regions. People with ABI often live at home with their partners, parents or children, who take care of them.

People with ABI and their families need:
•    complex rehabilitation available during the acute phase and thereafter until the very reintegration into a working or personal life
•    enough information (about the injury, the consequences, possibilities of treatment and rehabilitation therapy, services available) during the therapy and rehabilitation
•    enough psychological and social support that would help the people and their families to cope with the changes related to the brain injury
•    to have access to a proper diagnostics (primarily to the neuropsychological diagnostics and ergodiagnostics) of the injury followed by a targeted work and social rehabilitation performed by a multidisciplinary team
•    to have access to low regional, specialized facilities for people with ABI (especially for those resting in persistent vegetative state, suffering from apalic syndrome, or people with serious behaviour disorders) equipped with proper technical facilities and personnel
•    to have an access to respite care that would be available to families caring of people with serious ABI at a domestic environment (daily care centres and welfare institutions)
•    the health and social care to be interconnected, integrated and well-coordinated