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| Author(s): |
Danielle Maria de Souza Serio dos Santos
Total Authors: 1
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| Document type: | Master's Dissertation |
| Press: | Ribeirão Preto. |
| Institution: | Universidade de São Paulo (USP). Escola de Enfermagem de Ribeirão Preto (PCARP/BC) |
| Defense date: | 2010-01-22 |
| Examining board members: |
Claudia Benedita dos Santos;
Rosana Aparecida Spadoti Dantas;
Lidia Alice Gomes Monteiro Marin Torres
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| Advisor: | Claudia Benedita dos Santos |
| Abstract | |
Cystic Fibrosis (CF) is a genetic chronic condition that can affect several organs. The complexity of the issues involved on the lives of people with CF challenges researchers and health professionals to care and evaluate their health broadly. Researches about Health related Quality of Life (HRQoL) are proposed to investigate and evaluate the impact of illness and its treatment on people\'s lives. The DISABKIDS project, developed simultaneously in seven European countries, provides instruments to measure the HRQoL of children and adolescents with chronic conditions, among them, a specific instrument to CF. This quantitative methodological study, aimed to make the pilot phase of cultural adaptation and validation for Brazil DISABKIDS-Cystic Fibrosis Module®. After translation and back translations the data were collected from children and adolescents aged 8 to 18 and their parents or caregivers. Data collection was conducted from January to October 2009, and the sample was 128 participants in 4 Brazil\'s states. The results were very satisfactory, showing that the instrument was well accepted and understood by participants and within the ten items, only one was culturally adapted. The initial psychometric properties of the instrument showed acceptable internal consistency, with values always above 0.70 and no greater than 0.85 for children and adolescents and their parents or caregivers in both dimensions, very satisfactory convergent validity for the two dimensions , impact and treatment, in both versions, self and proxy, with scale fit values always above 75% and substantial agreement between self and proxy answer to both dimensions impact and treatment, with a value of 0.65. The results show that the DISABKIDS-CFM ® could constitute a valid and reliable instrument and can be inserted in the routine follow-up of people with CF. (AU) | |