SANE is a Swedish parental and patient society for Pediatric Autoimmune Neuropsychiatric Syndrome (PANS) and related immunopsychiatric disorders such as Autoimmune encephalitis (AE) and Sydenham’s Chorea (SC). SANE has supported individuals with PANS and their families since 2013. It was observed that suicidality, including suicide attempts and self-harming behavior, was not uncommon. Moreover, there is literature supporting the idea of suicidal ideation and self-harming behavior occurring in PANS (e.g., Hesselmark and Bejerot, 2019; Frankovich et al., 2015a). However, knowledge about the extent and characteristics of self-harming behavior and suicidality in PANS has been lacking. In light of the known links between self-harming behavior and suicidality (Whitlock and Knox, 2007), the lack of knowledge in the field, and the fact that children’s and adolescents’ mental health, as well as suicide prevention, are priority areas in society, SANE applied for project funding to conduct a survey. The results of the survey are presented in this report which was first published in Swedish 2021.
The report author and SANE Sweden would like to thank all parents and relatives who took the time to fill out the survey. We also would like to thank the Public Health Agency for the project funding that made this report possible. Special thanks to Professor Susanne Bejerot for her invaluable assistance with the report.
The report has been financed with funds from Folkhälsomyndigheten, the Swedish Public Health Agency.
We hope that this exploratory study will generate avenues for future research using both quantitative and qualitative methods.
Read the report and download it as pdf here: Selfharm & suicidality PANS.
Gunilla Gerland, author
Katrin Pettersson, chair SANE Sweden