Factors associated with quality of life among people with rare disorders: a survey study on people with Osteogenesis imperfecta
| Autor: | Mei-Ling Lin, 林玫玲 |
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| Rok vydání: | 2008 |
| Druh dokumentu: | 學位論文 ; thesis |
| Popis: | 97 Background/Purpose. Little account has been taken of quality of life (QoL) among people with rare disease (Osteogenesis imperfecta). This survey study aims to examine the factors of QoL among people with Osteogenesis imperfecta and to construct a model of the effect of the factors in on QoL among this group. Methods. A structural survey interview was administered to 93 people who were 15-years or older with Osteogenesis imperfecta. The survey package contained the standardized scales to collect these people’s social support, health, depression, and QoL, including their sociodemographic data. Results. Results from the analysis revealed: (1) Osteogenesis imperfectas’ gender, the level of joining the civil group, serious degree of the disease, confucious degree of the symptoms, social support, demand satisfies and depression were very important factors effecting the QoL for the osteogenesis imperfectas. (2)Four mainly paths found from SEM ： "gender →demand satisfies → depression → QoL", " serious degree of the disease →demand satisfies → depression→ QoL", " degree of join the civil group→ social support → depression → QoL", " confucious degree of the symptoms → social support →depression → QoL". Conclusion. This study suggests the social workers and rare disorders’ family should pay more attention to the mental condition of the male with serious conditions, or to whom joining fewer social activities. The government should work with the civil organization to set up the policies which can meet the osteogenesis imperfectas’ demands closely, and to provide more specific supports for them. |
| Databáze: | Networked Digital Library of Theses & Dissertations |
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