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Severe chronic disease always negatively impacts the psyche of the patient, regardless what organs or organ systems are affected. There are several factors contributing to mental health and serenity, e.g.: quality of health care, social and economic support, personality predisposition of the patient, their partnership, family and wider society relations. Shedding of friendly relations and leisure activities, as well as problems in the partnership are the most serious factors that produce frustration, anger, low self-esteem or even a sense of futility. These emotions, along with pain and fear of disease and fear from the future in many cases eventually lead to depression. Therefore we consider it necessary to pay attention not only to the physical condition of the patient with a rare disease, but also to their psyche; in the broader context of partnership and parenthood. In case of a pediatric patient comfort and serenity of parents has a strongly harmonizing effect on the physical and mental condition of the child. The article deals in detail with the symptoms of distress of the patient and his family, and finally defines the goals of psychological counseling and therapy, including family therapy as a whole. Závažné chronické ochorenie má vždy negatívny dopad na psychiku pacienta, bez ohľadu na to, ktoré orgány alebo orgánové systémy postihuje. Činitele prispievajúce k psychickému zdraviu a vyrovnanosti sú viaceré: súvisia napríklad s kvalitou zdravotníckej starostlivosti, sociálnou a ekonomickou podporou, s osobnostnými predispozíciami pacienta, jeho vzťahmi v partnerstve, rodine a širšej societe. Ubúdanie priateľských vzťahov a záujmových aktivít, ako aj problémy v partnerstve sú najzávažnejšími faktormi vyvolávajúcimi frustráciu, hnev, pocit nízkej sebahodnoty až zbytočnosti. Tieto emócie spolu s bolesťou a strachom z ochorenia i z budúcnosti v nejednom prípade vedú napokon k depresii. Považujeme preto za nevyhnutné venovať pozornosť nielen fyzickému stavu pacienta so zriedkavou chorobou, ale aj jeho psychike a to v širšom kontexte partnerstva a rodičovstva. V prípade detského pacienta má pohoda a vyrovnanosť rodičov výrazne harmonizujúci vplyv na fyzickú aj duševnú kondíciu dieťaťa. V článku sa podrobne zaoberáme symptómami psychickej nepohody u pacienta a jeho rodiny a v závere definujeme ciele psychologického poradenstva a terapie, vrátane terapie rodiny ako celku.

acta facultatis pharmaceuticae universitatis comenianae

Psychological Aspects of Patients and Their Families Suffering from a Rare Disease / Psychologické aspekty pacientov a ich rodín postihnutých zriedkavou chorobou