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

ABSTRACT

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.

KEYWORDS:

• PANS
• experiential knowledge
• collaborative care
• mental healt care
• epistemic injustice

Disclosure statement

No potential conflict of interest was reported by the author(s).

Biographical note

My research interests lie in the field of disability, especially disabled people’s opportunities to participate in social life, in meeting with social services and health care, as well as in education. In recent years, I have led interdisciplinary research projects focused on user-involvement, person-centred social practices, how digital support for clients/patients can promote participation, and how implementation of new interventions can be promoted in social services and health care. I also run a project that studies how young people without work and studies can be supported to make a move towards work, participation and a sense of belonging.

Additional information

Funding

The work was supported by the Folkhälsomyndigheten.