The experience of supporting persons with multiple sclerosis

Multipla skleroza je kronična, progresivna, neurološka bolest koja utječe na sve aspekte života osobe s obzirom na nepredvidivost tijeka bolesti. Socijalna podrška je bitan čimbenik interakcije pojedinca s društvom u cjelini te podrazumijeva dostupnost resursa u socijalnoj okolini koji pojedincu pružaju podršku u svakodnevnom životu te kriznim situacijama i time pridonose njegovoj dobrobiti. U istraživanju je sudjelovalo 11 sudionika s područja Hrvatske te je metoda prikupljanja podataka bio polustrukturirani intervju. U obradi podataka je korištena tematska analiza. Rezultati pokazuju kako su osobama s multiplom sklerozom izvori podrške članovi obitelji, prijatelji i radna okolina te su im pruženi oblici emocionalne, praktične i financijske podrške. U pogledu formalnog sustava, rezultati pokazuju dijelom pozitivna iskustva sa stručnjacima, no prevladava neodgovarajuća podrška osobama s multiplom sklerozom od strane stručnjaka formalnog sustava. Preporuke sudionika za unaprjeđenje sustava su usmjerene na unaprjeđenje sustava formalne podrške, senzibilizaciju okoline, osiguranje pružanja dodatne emocionalne i informacijske podrške te uključivanje osoba s multiplom sklerozom kao dionika u sustav formalne podrške. Ovaj rad prikazuje prvo kvalitativno istraživanje u Hrvatskoj o socijalnoj podršci osoba s multiplom sklerozom.Multiple sclerosis is a chronic, progressive, neurological disease that affects all aspects of a person’s life given the unpredictability of the course of the disease. Social support is an important factor in the interaction of the individual with society as a whole and implies the availability of resources in the social environment that provide support to the individual in everyday life and crisis situations and thus contribute to his well-being. The study involved 11 participants from Croatia and the method of data collection was a semi-structured interview. Thematic analysis was used in data processing. The results show that people with multiple sclerosis are supported by family members, friends and the work environment, and are provided with forms of emotional, practical and financial support. In terms of the formal system, the results show some positive experiences with professionals, but inadequate support for people with multiple sclerosis by formal system professionals prevails. Participants' recommendations for improving the system are aimed at improving the formal support system, sensitizing the environment, ensuring the provision of additional emotional and informational support, and including people with multiple sclerosis as stakeholders in the formal support system. This paper presents the first qualitative research in Croatia on social support for people with multiple sclerosis