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

AIM: This article explores experiential knowledge of living with paediatric acute-onset neuropsychiatric syndrome (PANS), and the factors that are associated with perceived good care. METHODS: Ten people with lived experience of PANS participated, five women and five men aged 19–34. Semi-structured interviews were used to explore their experience of living with PANS and their encounters with healthcare. Thematic analysis was carried out to identify central themes in the transcribed interviews. RESULTS: The study revealed a group of young adults living fairly isolated lives, dependent on care from relatives. To them, 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. In addition, 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, emerged in the interviews. The participants emphasized the need for increased knowledge among staff to identify PANS and be able to offer effective treatment. CONCLUSION: There is a need to increase the knowledge about PANS in healthcare and to coordinating care between neurology, immunology and psychiatry. To be able to offer evidence-based care to children with PANS, in-depth knowledge is needed about aetiology, treatment effects, and user experiences and preferences.