For professionals

Abstract

Severe brain injury can lead to long-term loss of consciousness. After recovering from a comatose state, some patients transition to a vegetative state that lasts for weeks, months, or even years. The presence of patients in a prolonged unconscious state is demanding for families, but also for all professionals involved in the treatment and care of these patients. In 1987, the therapists experienced this in a small (children's) rehabilitation center. This has resulted in the development of a treatment programme, the Early Intensive Neurorehabilitation programme (EINP). Ultimately, the need for a systematic evaluation of EINP resulted in an extensive research program. The question is whether recovery processes occur in patients in a prolonged vegetative state or in a minimally conscious state. And if so, the question arises whether treatments have positive effects and what the long-term functional outcome of these patients will be.

Three topics have been elaborated in this dissertation. First, the focus was on the concept of the different levels of consciousness, including the development of an observation scale: the Post-Acute Level of Consciousness scale (PALOC-s). This scale was found to be very reliable and valid, and provides clinicians and researchers with the opportunity to distinguish between different levels of unconsciousness, which can contribute positively to the diagnosis, prognosis, and treatment of these patients.

Secondly, the development of the level of consciousness of the children and young adults who participated in EINP was investigated. The results indicate a positive effect of EINP on the recovery to consciousness. These results are sufficient to recommend the application of EINP for all patients in VS or MCS, as soon as possible after they come out of the comatose state.

Thirdly, the long-term outcome, social participation and quality of life of the patients, and the involvement and coping strategies used of family members were studied. The perceived quality of life of the patients was found to be quite high, despite the fact that most of them experienced long-lasting effects.

Moreover, it could be concluded that it is important to avoid a passive coping style in family members to avoid a negative impact on the perceived long-term quality of life of the patients. This research project originated during the development of EINP in 1987. From the outset, it was recognized that evaluation of the recovery processes was important. Nevertheless, it turned out to be very difficult to develop a valid and reliable research design within the clinical context of the small (children's) rehabilitation centre. Now, 20 years later, it can be concluded that all the efforts of so many are finally successful. Based on this research project, EINP has recently been recognized as a valid rehabilitation technique for patients in the US and MCS. Twenty years ago, no one could have imagined that this would be the result of the development of a single treatment program for a single five-year-old girl.