How do we live with chronic disease?: a rights-based approach promoting the wellbeing of children with chronic disease

• Type: Article in International Scientific Journal
• Date: 2019

Authors

Sofia Castanheira Pais (Author) FPCEUP; Isabel Menezes (Author) FPCEUP

Journal

Title: Ciência & Saúde Coletiva

Vol. 24 No. 10

Pages: 3663-3672

ISSN: 1413-8123

Publisher: Associacao Brasileira de Pos-Graduacao em Saude Coletiva

Indexing

ISI Web of Knowledge - 0 Citations

Scopus - 0 Citations

Associated Projects

CIIE - Centro de Investigação e Intervenção Educativas

Other information

Authenticus ID: P-00R-3YW

DOI: 10.1590/1413-812320182410.17932019

Abstract (EN): 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.

Language: English

Type (Professor's evaluation): Scientific

No. of pages: 10