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

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, co...

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Bibliographic Details
Published in:Ciência & saude coletiva 2019-10, Vol.24 (10), p.3663-3672
Main Authors: Pais, Sofia Castanheira, Menezes, Isabel
Format: Article
Language:English
Subjects:
Adolescent
Child
Child Welfare - psychology
Children & youth
Childrens health
Chronic Disease - psychology
Chronic illnesses
Empowerment
Female
Focus Groups
Health Personnel - statistics & numerical data
Health Policy & Services
Humans
Interviews as Topic
Male
Parents - psychology
Patient Rights
Quality of life
Surveys and Questionnaires
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Summary: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.
ISSN:1413-8123
1678-4561
1678-4561
DOI:10.1590/1413-812320182410.17932019