College of Nursing and Health Sciences PhD Doctoral Dissertation Defense - Michelle Ray Pinto, MSN, RN, CNEn
College of Nursing and Health Sciences PhD Doctoral Dissertation Defense - Michelle Ray Pinto, MSN, RN, CNEn
DATE: 4/13/2026
TIME: 1:00PM -3:00PM
PLACE: ADMIN 308 (Foster Admin Building)
ZOOM: please contact dhoffman@umassd.edu for link
COMMITTEE: Mary McCurry, PhD, RN, RNBC, ANP, ACNP (CHAIR)
Mirinda Tyo, PhD, RN, TCRN
Gerrie Lyn Boyden, PhD, RN, CNE, PMH-BC
TITLE: Perceived Family Burden in Pediatric Acute-Onset Neuropsychiatric Syndrome and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus: A Descriptive Correlational Study
Background: Families of children with Pediatric acute-onset neuropsychiatric syndrome (PANS) and pediatric autoimmune neuropsychiatric disorder associated with streptococcus (PANDAS) face a unique burden related to these frequently misunderstood illnesses. PANS and PANDAS cause a variety of neuropsychiatric symptoms that disrupt every facet of daily life. The sudden onset of symptoms and unpredictability of flares are part of the burden. Families are also burdened by difficulty accessing care and treatment. Previous qualitative research indicated PANS/PANDAS presents numerous and ongoing challenges for families of affected children, but no known research has quantitatively measured family burden and identified the correlates and predictors. The purpose of this study was to measure family burden in families affected by PANS/PANDAS and to identify factors that correlate and predict family burden.
Methods: A cross-sectional descriptive correlational survey of 154 primary caregivers of child(ren) with PANS/PANDAS measured family burden from the parent or primary caregiver perspective. Data was analyzed to identify strength and direction of relationships between illness-related variables, access to care, and uncertainty with the dependent variable family burden. Variables that were correlated with family burden were further examined using hierarchical multiple regression analysis to identify predictors of family burden. Qualitative responses were used to provide additional context and support for the quantitative findings.
Results: The mean level of perceived family burden measured by the Burden Assessment Scale was 63.54, indicating high burden. The level of burden was high in 98.7% of respondents. Illness related factors significantly correlated with increased family burden included the diagnosis of PANS, PANDAS, or both, illness course, symptom severity, uncertainty, unpredictability, and missed school days. Access to care factors significantly correlated with burden included time to diagnosis, number of providers to reach diagnosis, current number of providers, and high out-of-pocket costs. Hierarchical multiple regression analysis was conducted to examine predictors of family burden. Variables were entered in blocks based on theoretical relevance, allowing assessment of the incremental contribution of each set of predictors to the variance in family burden. Number of providers to diagnosis, out-of-pocket costs, and increased threat to family integrity were found to be persistent predictors of family burden. Qualitative data supports delays in diagnosis and the need to see multiple providers to reach diagnosis contributes to family burden in PANS/PANDAS.
Conclusions: The identification of time to diagnosis, out-of-pocket costs, and perceived threat to family integrity as predictors of family burden highlights the importance of early diagnosis, financial support resources, and family support interventions for families of children with PANS/PANDAS. Nurses and healthcare providers are in a key position to identify families who may be at greater risk due to prolonged diagnostic processes, financial strain, or concerns about family stability. This study highlights opportunities for nurses to develop family-centered interventions aimed at reducing family burden and supporting families coping with PANS/PANDAS. Additionally, the findings suggest a need for healthcare systems to address barriers that contribute to delayed diagnosis and financial hardship for families. Future research is needed to explore the relationships of the illness-related factors significantly correlated with family burden that were not significant predictors.
Foster Admin Building 308
: ZOOM
Deanna Hoffman
dhoffman@umassd.edu