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A qualitative exploration of children's lives with rare diseases.

Niamh BuckleYvonne RogersDoris O'TooleSandra McNultyThilo KrollLisa GibbsSuja Somanadhan
Published in: Child: care, health and development (2024)
Our analysis revealed a complex interplay between the participants' sense of belonging and their awareness of being different, influenced by the manifestations and demands of their rare conditions or illnesses. This duality in their identity was most pronounced in social settings, where the participants felt the most significant impact of their rare diseases. Understanding this interplay sheds light on the unique social challenges children with rare medical conditions face. Raising awareness about these conditions could mitigate these children's social challenges, fostering a more inclusive society for those with rare diseases.
Keyphrases
  • healthcare
  • young adults
  • mental health