Abstract
PANDAS is the abrupt onset of OCD or tics after streptococcal infection in a formerly healthy child. We used qualitative phenomenology to explore family quality of life (FQOL) in six families with a child who developed PANDAS in early childhood. Data were collected through interviews, which were transcribed and analyzed through a rigorous inductive process. Results indicate that PANDAS severely impacts FQOL, and OT's awareness of PANDAS may be key to supporting the child and family.
Primary Author and Speaker: Barbara Demchick
Additional Authors and Speakers: Julia Ehler, Shelly Marramar, Alison Mills, Amanda Nuneviller
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection (PANDAS) is the sudden onset of obsessive compulsive disorder and/or tics following streptococcal infection in a previously healthy child. Symptoms include emotional lability, personality changes, sensory defensiveness, attention deficit hyperactivity disorder, oppositional defiant disorder, depression, separation anxiety, generalized anxiety, and academic difficulties (Williams & Swedo, 2014), and demonstrate an episodic course, occurring whenever the child becomes ill. PANDAS is complex and difficult to diagnose, as strep infection may go undetected. It may present like a behavioral disorder, making it harder to recognize (Doran, 2015). PANDAS impacts the child’s occupational performance at home and school (Tona et al., 2017), affecting the family. It is therefore important for occupational therapy (OT) practitioners to understand how PANDAS affects family quality of life (FQOL).
The purpose of this qualitative phenomenological study was to explore FQOL in families with a young child with PANDAS. Qualitative methods were used due to the complex nature of FQOL. The phenomenology allowed researchers to understand individual experiences of the families and to find the central underlying meaning. Research questions were: How do parents describe their FQOL? What factors support and inhibit FQOL?
Participants were six families of a child with PANDAS, five mothers and one mother/father dyad, selected via convenience sampling. Each had a child who developed PANDAS prior to first grade, before establishing school routines. Following IRB approval, each family participated in a 1- 1.5 hour semi-structured interview that was recorded and transcribed with permission and a second phone interview to confirm findings. Each transcript was coded by two investigators to ensure trustworthiness. Data were analyzed by reading transcripts line by line and extracting statements that provided understanding of how the participant experienced FQOL. Data were organized into meaningful clusters, forming initial codes (Creswell & Poth, 2018). All researchers conferred about the codes for each interview to find commonalities and significant statements. Clusters of meaning were tied together into themes. Researchers reflected on themes to determine which were key to FQOL.
Results revealed five themes. First, Life Suddenly Turned Upside Down, includes the parents’ descriptions of how the sudden PANDAS symptoms changed their lives in extreme ways. The My Child is Not Crazy theme depicts a lack of understanding by the medical world. Families discussed that doctors often treated their children as psychiatric patients and made them feel as if they were bad parents. Emotional Distress within the Family entails how emotionally drained parents were and included discussion of the mental health challenges they and other family members face. The fourth theme, Major Life Alteration, conveys the large-scale changes that families have made because of how PANDAS impacts their families in all areas of occupation. Lastly, School Drastically Influences FQOL relays parents’ experiences with their child’s schooling. It involves parents’ concerns that school personnel view their child’s PANDAS symptoms as if they are within the child’s control and parents' impression of some school interventions as ineffective.
FQOL is severely affected by a child’s PANDAS. Sensitivity enhances FQOL and misconceptions inhibit FQOL. Results point to the need for better recognition and awareness of PANDAS and impact practice by suggesting a role for OT in supporting the child and family. OT’s understanding of PANDAS can optimize occupational performance and FQOL and can shape intervention for children and families.
Creswell, J. W. & Poth, C.N. (2018). Qualitative inquiry and research design: Choosing among five approaches (4th ed.). Thousand Oaks, CA: Sage.
Doran, P. R. (2015). Sudden behavioral changes in the classroom: What educators need to know about PANDAS and PANS. Beyond Behavior, 24(1), 31-37.
Tona, J. T., Bhattacharjya, S., & Calaprice, D. (2017). Impact of PANS and PANDAS exacerbations on occupational performance: A mixed-methods study. American Journal of Occupational Therapy, 71(3), 1-9. doi:10.5014/ajot.2017.022285
Williams, K. A., & Swedo, S. E. (2014). Post-infectious autoimmune disorders: Sydenham’s chorea, PANDAS and beyond. Brain Research 1617, 144-154. doi:10.1016/j.brainres.2014.09.071