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Presentation of the first psychological guide for those affected by rare diseases (02/02/2010)

The delegate of ERDF in Murcia, Juan Carrion Tudela and psychologist D'Genes association, Ana Garcia, presented at the headquarters of the association promoted by ERDF phone in partnership with Merck Serono which aims to provide tools and intervention with families affected.

The objective of Counseling is to facilitate the process of change that is having a chronic illness and minimizing the emotional impact, to reduce the risk of psychopathological consequences, promoting the person concerned and his family to take responsibility for their own welfare.

Is an important resource that aims to better adaptation to chronic illness and improved quality of life.

Emotional reactions associated with the diagnosis of an illness can cause behavioral disorders and psychopathology negatively influencing the process of adaptation to illness and quality of life of the person and his family.

Processing know about the disease itself and, if necessary, modify the strategies used to deal with it, would avoid such a negative for the family.

In the case of Rare Diseases (ER), the need for psychological support increases.

In most cases, those affected are undiagnosed or have lived a long process to get the diagnosis: lack of specific treatment and adequate information.

Psychological Care in ER

This ignorance leads to the search for medical solutions, uncertainty about its evolution, different perspectives of attention to the disease and an uncertain prognosis.

These consequences, coupled with the spread of cases, cause a range of emotional reactions that impede the adjustment process can be carried out constructively.

Posed different levels of care in the ER Psychological Support, depending on the complexity of needs that appear during the disease process.

The more complex, will require professional intervention from psychology and psychiatry.

The diagnosis of ER can reach trigger depression or anxiety, and significant impairment of self-esteem, sleep disturbances and difficulty concentrating.

Counseling Guide for ER

Due to the foregoing and in order to improve the quality of life of those affected by ER, their families and caregivers, ERDF in collaboration with Merck Serono intends to carry out the publication of the Guide to Psychological Support for ER.

This guide is intended that persons who fulfill the task of helping the affected families and ER may help determine the process by learning and understanding, establish performance criteria that can go all the professionals and volunteers working with affected ER and their families.

Learning to understand and to help.

The guide will be a very valuable from the standpoint of intervention with families and affected, and will provide material support and training professionals.

· First Party Guide

The first part defines the ER and its context, its needs and demands at the psychosocial and health, as a starting point to develop the tools and learning that lead to affected families, carers and professionals to carry out the process for Psychological Support effectively.

• Second Part of the Guide

In the second part, different fields of psychology, especially in chronic diseases and rare, we are taught to understand and identify emotional reactions and better tools to handle them.

Learn to recognize and understand the need for the different phases of the adaptation process by passing the patient and his family, and that attitudes are best suited to address them and to carry out this process in an objective and constructive.

Will address stress as a risk factor for some symptoms and signs of these diseases trigger emotional reactions, which directly affect the stability of the family and the welfare and health of the affected.

It established guidelines stress management as a means of improving the quality of life.

To end this second part, will be taught to use different communication tools to learn to deal with information and get close to the patient and his family and to help reduce the emotional impact and increase the perception of control through effective communication.

In our culture we are inclined to reassure, to give advice, to propose immediate solutions.

There is a tendency to judge, interpret and evaluate data sparse. Establish a good relationship with the patient or family is only possible if done through effective communication.

To accomplish this there is no generalized prescriptions for all, as the interactions between people are always different, but we learn that certain forms of communication are much more effective.

· Third Party Guide

In this last part will learn via FEDER professionals the types of services they offer, based on the ratio of aid and encouraging information.

It presented the Information and Guidance Service (WIS), The Psychological Care and Psychosocial Services On-line.

Source: D’Genes. Fotos: Murcia.com

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