How do we live with chronic disease? A rights-based approach promoting the wellbeing of children with chronic disease.
Cien Saude Colet
; 24(10): 3663-3672, 2019.
Article
en En
| MEDLINE
| ID: mdl-31576996
This paper focuses on the life experiences of children with chronic disease, a group whose invisibility involves particular challenges in their relationship with professionals in important life contexts, such as family, school and hospital. The study includes two complementary phases: i) Phase 1, composed of 15 interviews with parents, education and health professionals and two focus group discussions with children, and children and their mothers; and ii) Phase 2, which included self-report questionnaires administered to parents (n = 152) and children with chronic disease (n = 176). Based on a mixed methodology, this study combines quantitative and qualitative methods assuming that plural approaches allow for a deeper understanding of the life conditions of children with chronic disease and their families. The results reinforce the reproduction of social stereotypes and the tendency to focus on the individual ability to solve problems, which still remain to be circumscribed to the people's chronic disease sphere. Moreover, this paper reveals the central role that inclusive contexts have on children's wellbeing.
Texto completo:
1
Colección:
01-internacional
Base de datos:
MEDLINE
Asunto principal:
Padres
/
Protección a la Infancia
/
Enfermedad Crónica
/
Derechos del Paciente
Tipo de estudio:
Qualitative_research
Límite:
Adolescent
/
Child
/
Female
/
Humans
/
Male
Idioma:
En
Revista:
Cien Saude Colet
Año:
2019
Tipo del documento:
Article
País de afiliación:
Portugal
Pais de publicación:
Brasil