Cieľ: Cieľom štúdie bolo opísať a interpretovať dopad sklerózy multiplex (SM) na vybrané sociálne aspekty života, na rodinu a pracovný život. Design: Kvalitatívna prierezová štúdia. Metodika: Súbor tvorilo 14 probandov so SM, s priemerným vekom 44,7 rokov (± 9,8) a priemernou dĺžkou ochorenia 9,93 roka (± 5,97). Na zber empirických údajov bol použitý pološtruktúrovaný rozhovor podľa vopred pripraveného protokolu vlastnej konštrukcie v období január-október 2018. Rozhovory boli analyzované prostredníctvom interpretatívnej fenomenologickej analýzy. Výsledky: Symptómy ochorenia limitovali probandov pri vykonávaní aktivít denného života, prežívali strach zo straty sebestačnosti a obavy z budúcnosti. SM ich limitovala v pracovnom živote pri progresii ochorenia, čo súviselo so znížením kvality ich života. U väčšiny z nich SM ovplyvnila aj kvalitu vzťahov v rodine, vrátane partnerského. Partneri a deti probandov boli zdrojom sociálnej opory, ale potrebovali čas na akceptáciu SM a života s ňou. Záver: Poznanie vybraných aspektov života u jednotlivcov so SM prispeje k poznaniu ich problémov a dáva možnosť konkrétnej pomoci v rámci zaistenia komplexnej starostlivosti.

Aim: To describe and interpret the impact of multiple sclerosis (MS) on selected social aspects of life, on the family and working life. Design: A qualitative cross-sectional study. Methods: The group consisted of 14 probands with MS, with an average age of 44.7 years (± 9.8) and average disease duration of 9.93 years (± 5.97). To collect empirical data, we used a semi-structured interview according to a pre-prepared protocol of our own design, in the period between January-October 2018. The interviews were analysed via an Interpretative Phenomenological Analysis. Results: Due to the disease symptoms, the probands experienced limitations when performing daily activities. They also experienced fear of losing self-sufficiency and were worried about the future. With the progression of the disease, there were also limitations in their working life which affected the quality of their lives. For most of them, MS also had an impact on the quality of family relationships including relations with their partners. Although the partners and children of probands were a source of social support, these people needed some time to accept MS and live with it. Conclusions: Knowledge of selected aspects of life in individuals with MS can contribute to knowing their problems, and makes it possible to provide specific help within complex care provision.

Comenius University in Bratislava Jessenius Faculty of Medicine in Martin Department of Nursing Martin Slovak Republic

Vybrané sociálne aspekty života pacientov so sklerózou multiplex

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