Living with Paediatric acute-onset neuropsychiatric syndrome (PANS) – a qualitative study of Children’s experiences in Sweden

Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) is a relatively new diagnosis, characterized by an abrupt and dramatic onset of obsessive-compulsive disorder, together with neuropsychiatric symptoms. The study aimed to understand the experience of living with PANS from the perspective of children with the diagnosis. The study employed semi-structured interviews with nine children, aged 10–18 years old, with a diagnosis of PANS. An inductive qualitative content analysis approach was used as a guide for analysis of data. The analysis identified three main categories: (1) “Suffering” reflects the aversive emotional, cognitive, and physical experiences of PANS, and its negative consequences on life; (2) “Powerlessness” reflects a lack of control, difficulties involved with predicting and managing the symptoms, not having words to describe one’s needs, and experiencing a lack of understanding from healthcare providers; and (3) “Being encouraged” entails experiences of finding support and encouragement by receiving flexible treatments, adjusted to the person one is, and having someone who does not give up. The conclusions are that PANS has major negative consequences for the children’s well-being, and they experience limited possibilities to manage the symptoms. Flexible and personally adjusted treatments, and caregivers who are a stable source of support, are empowering.