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

Area of Science:

• Pediatric Health
• Child Psychology
• Sociology of Health

Background:

• Children with chronic diseases often experience invisibility within family, school, and healthcare systems.
• This invisibility presents unique challenges in their interactions with professionals and in daily life contexts.
• Existing research often overlooks the holistic life experiences of these children.

Purpose of the Study:

• To explore the lived experiences of children with chronic diseases.
• To understand the challenges they face in family, school, and hospital settings.
• To identify factors influencing their well-being.

Main Methods:

• A mixed-methods approach combining qualitative and quantitative data.
• Phase 1: 15 interviews with parents, educators, health professionals, and focus groups with children and mothers.
• Phase 2: Self-report questionnaires administered to 152 parents and 176 children with chronic diseases.

Main Results:

• Social stereotypes and a focus on individual problem-solving persist, often isolating the chronic disease experience.
• Children with chronic diseases and their families encounter significant challenges in navigating social contexts.
• Inclusive educational and healthcare environments were found to play a pivotal role in enhancing children's well-being.

Conclusions:

• Addressing social stereotypes and promoting inclusive environments are essential for supporting children with chronic diseases.
• A deeper understanding of their life experiences requires acknowledging the interplay of individual, familial, and societal factors.
• Interdisciplinary collaboration and tailored support systems are vital for improving outcomes for this population.