N Ringer, C Benjaminson, H Bejnö, Living with Paediatric acute-onset neuropsychiatric syndrome (PANS) – a qualitative study of Children’s experiences in Sweden. Cogent Psychology (2023), 10: 2259745 DOI:10.1080/23311908.2023.2259745
The study aimed to understand the experience of living with PANS from the perspective of children with the diagnosis.
- PANS causes suffering due to the aversive emotional, cognitive, and physical experiences and the negative consequences the symptoms cause. The dramatic and abrupt onset plus the nature of the symptoms cause intense fear.
- PANS makes them feel that they have no control or power over their lives. It is complicated due to the difficulty in predicting and managing symptoms. Also, difficult to describe their needs. It is difficult to work with providers who do not listen or really try to understand their needs and experiences.
- Meaningful support consists of having someone who does not give up and will continue trying treatments. Also, caregivers who are stable, empowering, and supportive are important.