Family Quality of Life When Raising a Child with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection (PANDAS)

Abstract

ABSTRACTPANDAS is characterized by rapid onset of Obsessive Compulsive Disorder and/or tics following streptococcal infection in a previously healthy child. PANDAS is frequently misdiagnosed and misunderstood, which affects family quality of life (FQOL). A qualitative phenomenological design was used to examine FQOL in six families with a child with PANDAS. Data were collected through an audiotaped semi-structured interview and a phone interview to confirm findings. After rigorous data analysis, five themes emerged: Life Suddenly Turned Upside Down, My Child is Not Crazy, Emotional Distress within the Family, Major Life Alteration, and School Drastically Influences FQOL. Findings suggest that occupational performance and FQOL are severely restricted when a child has PANDAS. Implications for occupational therapy are discussed.