INTRODUCTION Pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS) is a relatively new but controversial diagnosis affecting hundreds of children and their families. It is generally thought to be an autoimmune disorder resulting from a streptococcal infection that causes significant and bizarre behavioral changes in children. Currently no definitive diagnostic or treatment modalities exist, which has led to misdiagnoses, ineffective treatments, and delayed care. METHODS A qualitative study was conducted that included 60 families with at least one child diagnosed with PANDAS. The purpose was to explore how families experience the disorder and what nurses can do to provide effective care. RESULTS Using paradigmatic analysis of transcribed interviews, three themes were identified: fear, frustration, and not being heard. DISCUSSION Results from this study suggest that more information is needed to better understand this challenging phenomenon from both medical and nursing perspectives. The study also reaffirms the importance of practicing the art of nursing, especially when the science is not yet established.
M. McClelland, Mary-Margaret Crombez, Catherine Crombez
Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners