Young adults’ experiences of living with paediatric acute-onset neuropsychiatric syndrome. An interview study

Ulla-KarinSchön (2023) Young adults’ experiences of living with paediatric acute-onset neuropsychiatric syndrome. An interview study, International Journal of Qualitative Studies on Health and Well-being, 18:1, DOI: 10.1080/17482631.2023.2267268

This article explores experiential knowledge of living with paediatric acute-onset neuropsychiatric syndrome (PANS), and the factors that are associated with perceived good care.

  • Young adults living fairly isolated lives, dependent on care from relatives.
  • The illness was a tangible presence.
  • They perceived a lack of knowledge among healthcare staff on PANS in healthcare, and negative consequences linked to this. Their experience-based knowledge of their own illness is devalued in healthcare encounters.
  • A feeling of being pushed around in healthcare, without anyone taking responsibility for the treatment
  • Emphasized the need for increased knowledge among staff to identify PANS and be able to offer effective treatment.

Gabriella True

Gabriella True

Published : May 1, 2023
Category : Blog, Research

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