A new program of the EASE The EASE, Evaluation and Specialized Support Team in Neurorehabilitation of the Institut Guttmann is a socio-health and multidisciplinary resource that provides support to the people assisted and their families in the process of social and community reintegration.
With almost twenty years of experience, the team develops its function through specific actions and intervention programs. Some examples of these actions are pre-admission and home assessments, training for professionals in the care network, assessment and monitoring of pressure ulcers, etc. At the community level, it participates in programs in collaboration with other entities, such as the Multidisciplinary Motoneurone Unit, and has its own programs carried out by the occupational therapy area, such as the two post-disciplinary occupational therapy programs for people affected by brain damage and their families in the community environment.
Acquired brain injury (hereinafter, ACBD) is a brain injury caused by a blow (traumatic brain injury), a stroke, a tumor, lack of oxygen (for example, due to cardiorespiratory arrest) or an infection (such as meningitis).
ACD often causes physical, cognitive, emotional, behavioral and social difficulties, and results in an overall decrease in the quality of life of the person and his or her family environment. What we do and what gives us identity (activities of daily living, work, relationships, leisure, etc.) is affected and produces what in occupational therapy is called occupational deprivation, that is, the difficulty or impossibility to do what we want to do in the way we want to do it.
As can be assumed, this situation has consequences in the field of mental health. Many people may experience disorders and symptoms related to the brain structures that have been damaged, but there will also be psychological and emotional discomfort related to the experience of the past and what has been lost, to the traumatic event of the acquisition of the damage and the hospitalization phase, or to the changes in character and the difficulty of finding “the person I was before”. In some cases, the future is often perceived as hopeless or not even considered at all. If to this equation we add a previous mental health disorder (e.g., depressive disorder), or a diagnosis of dual pathology (with a history of drug use), we understand that the complexity of ACD is a challenge, both for family and personal management and for post-hospitalization social and health care.
In this sense, community mental health can provide us as professionals with an ideal intervention framework to facilitate the necessary continuity of care. From this perspective, actions of intervention, accompaniment and support are carried out in the person’s own environment, i.e., at home and in the community.
In the line of intervention proposed by the UN in its report on mental health and human rights (2017), three main categories of profile of people to be cared for are distinguished:
- Users of mental health services (or potential users).
- Persons with a mental health condition (diagnosed or undiagnosed).
- People with psychosocial disabilities.
People with acquired brain injury, as we have previously commented, would be likely to fall into all three categories or, at least, into one of them. However, reality shows us management difficulties within mental health networks, where the entity of the neurocognitive disorder following ACD is often ignored or masked by other previous or subsequent disorders.
In order to respond to this demand and establish a bridge of connection between the specialized care network, the person and his or her social environment, following the direction towards which community health is moving, the Community Mental Health Program for patients with ACD and their families was created.
What does the Community Mental Health Program consist of?
The program, which is funded by the Departament Català de Salut de la Generalitat de Catalunya, started at the end of 2017, and after a pilot phase in the course of 2018, it is currently implemented from community occupational therapy (by occupational therapist Marco Antonio Raya) and neuropsychiatry (by Dr. Beatriz Castaño). In addition, it has the collaboration of other professional figures of the EASE, such as health social work, nursing and neurology, along with the occasional support of other areas of the Institut Guttmann, such as rehabilitation or neuropsychology, and initiatives such as Sports&Life Guttmann Club.
The main objective of the program is to improve the quality of life of those affected and their families. From an occupational therapy perspective, we consider that this is achieved through full occupational participation, i.e., participation in activities that are meaningful to the person (related to his/her values and interests and, therefore, chosen by him/her), adapted to his/her capabilities (called occupational performance) and congruent with his/her physical, social, economic and cultural environment.
Full occupational participation is only possible when the person finds a balance between what he/she wants to do, what he/she thinks he/she has to do and what he/she can actually do. To achieve this, the person must be able to be in a state of mental health that facilitates decision-making, that fosters independence and autonomy and that allows the person to take, as far as possible, control over his or her own life. Thus, it is crucial to facilitate:
- That the person can carry out the roles that both he/she and his/her environment consider important (e.g., maternal, paternal, worker, student, etc.).
- That the person can structure his/her daily life in meaningful habits and routines.
- That the environment is adapted and accessible. The environment ranges from the physical (such as the home) to the social (such as relationships with close friends) and community (such as access to activities adapted to their needs according to the person’s needs).
- That the person can carry out work on the experience of his/her own body (what is known as the lived body), the understanding of the deficits and the valuation of the present strengths.