Subjektivna in objektivna ocena kakovosti življenja družine z otrokom z gibalno oviranostjo

Miklavčič, Nina (author), Filipčič, Tjaša (mentor)

Gibalna oviranost otroka vpliva na celotno družino in je svojevrstna življenjska izkušnja, vendar tudi velika preizkušnja. Družina z otrokom z gibalno oviranostjo mora v svojem načinu življenja marsikaj spremeniti in prilagoditi, vse to pa vpliva na kakovost življenja vseh njenih članov. V magistrskem delu sem ugotavljala, kako na subjektivno in objektivno oceno kakovosti življenja družine z otrokom z gibalno oviranostjo vpliva sprememba Zakona o osebni asistenci, po kateri lahko zdaj starš, ki je bil otrokov družinski pomočnik, postane njegov osebni asistent. Raziskovalna metoda je bila študija primera družine z otrokom z gibalno oviranostjo. Sodelovale so štiri osebe, gibalno ovirana osebe, njeni starši in sestra. Na podlagi izpolnjenih vprašalnikov iz leta 2017, ko so uveljavljali pravico do družinskega pomočnika in vprašalnikov iz leta 2020, po spremembi Zakona o osebni asistenci, sem pridobila subjektivno oceno zadovoljstva na različnih področjih kakovosti življenja. Objektivno oceno kakovosti življenja pa sem pridobila z analizo objektivnih podatkov iz področja materialne blaginje, pravic in telesnega ter psihičnega počutja s primerjanjem zakonov in pravilnikov, ki urejajo področje družinskega pomočnika in osebne asistence ter zdravstvenega stanja in počutja matere. Primerjava podatkov je pokazala, da sprememba statusa iz družinskega pomočnika v osebnega asistenta vpliva na subjektivno in objektivno oceno kakovosti življenja družine na vseh področjih. Razlike obstajajo na vseh področjih kakovosti življenja: materialna blaginja, telesno počutje, osebni razvoj, psihično počutje, samoodločanje, medosebni odnosi, socialna vključenost in pravice. Na področju psihičnega počutja pa je razlika v oceni zadovoljstva bila najvišja. Analiza objektivnih podatkov je prav tako pokazala, da obstajajo razlike med statusom družinskega pomočnika in osebnega asistenta na področju materialne blaginje, pravic in telesnega ter psihičnega počutja. Vse spremenljivke so po spremenjenem statusu višje ocenjene.

• Language: Slovenian
• Keywords: družina
• Work type: Master's thesis/paper
• Typology: 2.09 - Master's Thesis
• Organization: PEF - Faculty of Education
• Year: 2020
• PID: 20.500.12556/RUL-120662
• COBISS.SI-ID: 29366275
• Publication date in RUL: 25.09.2020

Secondary language

• Language: English
• Title: Subjective and objective evaluation of the quality of life of the family with a child with mobility impairment

Abstract

A child's mobility impairment affects the whole family, it is a unique life experience, but also a great ordeal. A family with a child with a disability needs to change and adapt many things in their way of life, which affects the quality of life of all its members. In my master's thesis I researched how the subjective and objective assessment of the quality of life of a family with a child with mobility impairment is affected by the amendment to the Personal Assistance Act, according to which a parent who was the child's family assistant can now become his personal assistant. The research method was a case study of a family with a child with a mobility impairment. Four people participated, person with mobility impairments, parents and sister. Based on the complete questionnaires from 2017, when they exercised the right to a family assistant and the questionnaires from 2020, after the amendment of the Personal Assistance Act, I obtained a subjective assessment of satisfaction in various areas of quality of life. An objective assessment of the quality of life I obtained by analysing objective data in the fields of material well-being and rights and in areas of physical and emotional well-being by comparing the laws and regulations governing the field of family assistant and personal assistance and health and well-being of mother. A comparison of the data showed that the change of status from family assistant to personal assistant affects the subjective and objective assessment of the quality of life of the family in all areas. Differences exist in all areas of quality of life: material well-being, physical well-being, personal development, emotional well-being, self-determination, interpersonal relationship, social inclusion and rights. In the area of self-determination the difference in satisfaction assessment was highest. An analysis of the objective data also showed that there are differences between the status of family assistant and personal assistant in the areas of material well-being and rights and in areas of physical and emotional well-being. All variables are rated higher after the status changed.

• Keywords: family