Education

Training

The purpose of this training is to provide the professional with tools to affectively participate in the experience of families with rare diseases and disabilities. Guide them in the recognition of the difficulties related to achieving a diagnosis and access to treatment, which have a negative and significant impact on the quality of life of these families. Empathic listening favors the bond between doctor and patient, improving adherence to treatment.

One of the most significant moments in the life of a family is when the diagnosis is communicated. According to different studies, this stage can be experienced as an experience of strong emotional impact, which disrupts the entire family group. Therefore, it is necessary to make it a moment of encounter and accompaniment.

The aim of this training is to provide tools to professionals, from a psycho-educational approach, so that they can promote the empowerment of families with rare diseases and disability.

Adherence to treatment in the main factor that impacts on quality of life and prognosis of a patient with rare diseases. Consequently, it is usually the aspect that mostly worries doctors regarding the daily life of these families.

The purpose of this training is to discuss variables associated with adherence to treatment, such as empowerment, caregiver overload, psychological adaptation, genetic literacy, among others, that favor treatment and communication with women. families.

Accompaniment to the health professional in the process of communicating the diagnosis of a rare disease or disability. Communication resources are provided for the family and emphasis is placed on the doctor-patient relationship based on empathy. 

 

Based on the Health Psychology framework, we offer training for health professionals, Universities, work teams, associations and foundations that are interested in training in the area of rare/orphan diseases or disabilities. The aim is to offer a space to reflect and discuss on practical and theorical issues, providing concrete tools. 

Even though in recent decades Rare Diseases (RD) have consolidated as a new concept of health, it continues to be an unknown and difficult issue to approach for certain disciplines. 

Given the lack of knowledge among health teams on the many rare diseases, the patient goes a long way to find a certain diagnosis. Most of the time this process is accompanied by a feeling of helplessness and uncertainty, and it can produce a strong emotional impact.

From Fupaeh we seek to offer a training space in the area, based on updated bibliography and scientific evidence.

The trainings are aimed at health professionals such as psychologists, psychopedagogues, therapeutic companions, integrators, occupational therapists, nurses, nutritionists, doctors, speech therapists, kinesiologists, among others.

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