Banca de QUALIFICAÇÃO: Jaine de Santana Feitosa

Uma banca de QUALIFICAÇÃO de DOUTORADO foi cadastrada pelo programa.
STUDENT : Jaine de Santana Feitosa
DATE: 13/12/2023
TIME: 16:00
LOCAL: https://bit.ly/3uKdybb
TITLE:

Self-perceived quality of life of people with rare diseases: a national study

KEY WORDS:

Rare diseases. Quality of life. Surveys and questionnaires.

PAGES: 58
BIG AREA: Ciências Humanas
AREA: Psicologia
SUMMARY:

There are approximately 13 million people with rare diseases in Brazil, a number that increases every

year, along with the need for research that considers this public as the protagonist of their experiences, so

that more projects and public policies can be developed regarding care. in health and other psychosocial

aspects. This research project aims to investigate the domains of self-perceived quality of life in people

with rare diseases in Brazil. It is justified by the possibility of problematizing issues that enable progress

in discussions about health, treatment and access to better living conditions for people living with rare

diseases, considering the context that exists in Brazilian territory. This is an exploratory and descriptive

study, with a cross-sectional design and mixed approach, disseminated and carried out through digital

means. The project was submitted for analysis by the Ethics and Research Committee of the Institute of

Human and Social Sciences of the University of Brasília, being approved with CAEE number

68473323.1.0000.5540. The research will be carried out in two stages, the first using the Brief Self-

Perceived Quality of Life Questionnaire (WHOQOL-BREF) and the Sociodemographic Questionnaire and

the second with semi-structured interviews, with the target audience being people with rare diseases who

reside in Brazil. The sample number of 385 participants for the first stage takes into account the

population of 13 million Brazilians affected by rare diseases. For the qualitative stage, 30 participants are

expected, 15 with diseases of genetic origin and 15 with diseases of non-genetic origin. Descriptive and correlational statistics will be used to analyze the data, using SPSS, and thematic content analysis. This research is expected to expand knowledge about the quality of life domains of people with rare diseases, especially to promote effective proposals in relation to health care.

COMMITTEE MEMBERS:
Externa à Instituição - VIVIAN SUSI DE ASSIS CANIZARE - UNIR
Interna - 241748 - ELIANE MARIA FLEURY SEIDL
Presidente - 1509363 - ELIZABETH QUEIROZ
Externo ao Programa - 1771799 - NATAN MONSORES DE SA - null