Assistance

Rare diseases or disabilities have a strong impact on the family quality of life. Quality of life is understood as a multidimensional concept that includes all the physical, social, contextual, psychological and relational aspects of the family.

The aim of this workshop is that family members can reflect on how they find their health status in a comprehensive sense. We provide alert guidelines for symptoms of caregiver burden and tools to generate improvements in all areas of quality of life.

A recurring problem in patients who have a frequent or rare condition is low adherence to treatment. Different barriers appear that can make it difficult to adhere to therapies or treatments at different evolutionary moments.

Therefore, the purpose of this workshop is focused on identifying the main barriers to adherence to treatment and to be able to provide strategies to improve such adherence and promote autonomy and empowerment.

WHO has described empowerment as a requirement and a self-care strategy to achieve good health and quality of life in chronic diseases.

Although the diagnosis of a rare disease or disability generates a strong psychological impact on the family group, the coping strategies used are a key for the family to be resilient in this process. Resilience make the families able to provide more efficient support to that child / young person with a diagnosis of rare disease or disability. Coping strategies are those tools that are used in stressful situations.

The purpose of this workshop is to provide families with strategies that facilitate this process, as well as to strengthen their social-family support network.

Some families with children with an rare disease or disability find it difficult to bond with other people. They tend to isolate themselves since they often feel that no one will be able to understand them because they are not going through the same things as them. Parents tend to take an overprotective stance towards their children, guided by concern about their health. This parental attitude is translated into difficulties in setting limits and a tendency to restrict the socialization of the child or adolescent. It is important that caregivers learn to differentiate what is specific to the medical condition, from those aspects that are related to the evolution of any child or adolescent.

The workshop seeks to promote family well-being, promoting communication, socialization and providing guidelines for parenting that favor the parent-child bond.

It is essential to be able to go through the grief generated by receiving a diagnosis, in order to achieve its acceptance. In this way, the parents or main caregivers can provide the necessary supports to the child or young person diagnosed with an EPOF or a disabling condition.

The purpose of this workshop is that families can understand the stages of grief, identify difficulties in this process and obtain tools for its acceptance. It is important to work on the feeling of anguish and guilt, as well as to advise families in communicating the diagnosis to members of the nuclear family and other important environments of the person (extended family, school, medical professionals, among others).

It is common to speak of burden or the main “caregiver syndrome”. This is characterized by focusing the attention on the person cared for so that the caregiver himself may neglect his physical health, his work life, social, emotional, or even your leisure times. All these aspects are important for the life of any person and have a great impact on mental health.

The main purpose of this workshop is that families can have a space to reflect on their health status in an integral sense, providing tools to generate improvements in these different spaces.

Siblings an important supporting role in the daily routine of caring for the person with rare disease or disability. Therefore, we should also consider them part of the group of caregivers.

The aim of this workshop is to discuss the acceptance of the diagnosis, reflect together with the siblings on their role and provide them with tools to accompany the process of their siblings in a better way, so that they are not left behind in the family, nor on demanded by the occupied place.

Identifying different emotions is fundamental. It allows individuals to consolidate their resources on how to respond to certain situations or experienced emotions. This has a great impact on the quality of life of patients and on how they interact with their closest environment.

The objective of this workshop is to provide psychoeducation on emotions and provide tools to promote emotional regulation.

Sexuality is a human right, inherent to all people. According to the WHO, it is a central aspect throughout a person’s life, which includes sex, gender identities and roles, eroticism, pleasure, intimacy, reproduction, and sexual orientation.

Many times, the sexuality of people with rare diseases of disabilities is seen as a “taboo”, both for the families and for the professionals. The lack of approach through sex education makes it even more difficult for them to consider their own and exogamous life project (outside the family nucleus). Being able to rethink these issues through a workshop and provide them with a space where they can raise concerns and obtain information about sexuality within diversity, is essential for young people and adults with a rare disease or a disability condition.

Self-determination, autonomy and being able to escape from the endogamous environment (family) are areas of great importance when working with people with disabilities or rare diseases. Being able to listen to the desire of these patients and enable them to ask what they want for their life has a great impact on independence, exogamy and independent life project.

The objective of this workshop is to investigate the interests, desires and projects of young people whose diagnosis is a rare disease or a disability condition, in order to enable a space for exchange and interest among peers.

The transition from the pediatric health care system to adult health services represents a challenge for adolescents with rare diseases or disabilities.

It is important that adolescents develop self-control and independence, empowerment in relation to self-care and health care, and communication skills to support this process and achieve effective communication with their health care team.