Kvaliteta života osoba oboljelih od neurofibromatoze tip 1

undergraduate thesis

• Title (english): Quality of life in persons with neurofibromatosis type 1
• Author: Ida Mirković Knaus
• Mentor: Marko Buljevac (mentor)
• Committee member: Marko Buljevac (predsjednik povjerenstva)
• Committee member: Zdravka Leutar (član povjerenstva)
• Committee member: Ana Opačić (član povjerenstva)
• Granter: University of Zagreb; Faculty of Law; (In social work); (Social Work with Disabled Persons); Zagreb
• Defense date and country: 2020-09-18, Croatia
• Scientific / art field, discipline and subdiscipline: SOCIAL SCIENCES; Social Activities; Specific Areas of Social Work

Abstract

Neurofibromatoza tip 1 (NF1) relativno je rijetka genetska, neizlječiva bolest progresivne naravi, karakterizirana u prvom redu brojnim kožnim promjenama, dok istovremeno dovodi i do promjena u svim organskim sustavima. Brojne promjene u zdravstvenom stanju osoba s NF1 mogu značajno otežavati njihovo svakodnevno funkcioniranje, a time i narušavati kvalitetu njihovog života. U ovom preglednom radu fokus je stavljen upravo na prikaz kvalitete života osoba oboljelih od NF1. Tako su u radu sustavno razrađene podteme tjelesne, psihološke, socijalne te okolinske dimenzije kvalitete života osoba oboljelih od NF1. Pokazalo se da je kvaliteta života osoba s NF1 smanjena u svim navedenim dimenzijama u odnosu na opću populaciju. Takvi podaci ukazuju na potrebu da se, uz zdravstvenu skrb, razviju i različite psihosocijalne intervencije kao dio opće brige o zdravlju osoba s NF1. Shodno tome, u radu su predstavljene različite prakse i metode socijalnog rada kojima bi ta profesija mogla doprinijeti unapređenju kvalitete života osoba oboljelih od NF1 i njihovih obitelji.

Abstract (english)

Neurofibromatosis type 1 (NF1) is a relatively rare genetic, progressive disease with no available cure, characterized primarily by numerous skin changes, while also leading to changes in all of the organ systems. Numerous changes in the health status of people with NF1 can significantly impede their daily functioning, and thus impair their quality of life. This paper focuses on the quality of life of people with NF1. The paper systematically elaborates on the sub-topics of the physical, psychological, social, and environmental dimensions of the quality of life of people with NF1. The quality of life of people with NF1 shows to be reduced in all of these dimensions compared to the general population. Such data suggest the need for development, in addition to health care, various psychosocial interventions as a part of the general health care of people with NF1. On that note, the paper presents various practices and methods of social work by which this profession could contribute to the improvement of the quality of life of people with NF1 and their families.

• Keywords: ključne riječi: neurofibromatoze; rijetke bolesti; kvaliteta života; socijalni model
• Keywords (english): key words: neurofibromatosis; rare diseases; quality of life; social model
• Language: croatian
• URN:NBN: urn:nbn:hr:199:777831
• Study programme: Title: Social Work; Study programme type: university; Study level: undergraduate; Academic / professional title: sveučilišni/a prvostupnik/prvostupnica (baccalaureus/baccalaurea) socijalnog rada (sveučilišni/a prvostupnik/prvostupnica (baccalaureus/baccalaurea) socijalnog rada)
• Type of resource: Text
• File origin: Born digital
• Access conditions: Closed access
• Created on: 2020-09-25 07:21:12