Developmental Impacts of PANS/PANDAS and Inadequate Support for Children and Families.

This article examines the degree to which major domains of child development are affected by Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS)/Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). Using cross-sectional survey data collected with an international sample of parents who identify as having children with PANS/PANDAS (N = 402), this study analyzed parent-reported developmental impacts and access to treatment and adequate supports. Parents reported that PANS/PANDAS negatively impacted their children's development across all domains: Emotional Development (92% of children), Social Development (90%), Cognitive Development (86%), Academic Growth (86%), Identity Development (83%), Talent Development (73%) and Language Development (50%). In addition, developmental impacts were likely to be more severe for children whose parents reported a greater number of inadequate supports with parenting, school, extracurricular activities, and crisis situations. These results indicate that children and families affected by PANS/PANDAS need better support to maximize children's opportunities, at home, in school, and in their communities, to continue developing despite challenging neuropsychiatric symptoms.

Teacher stress and ideal solutions: A qualitative comparison across elementary and middle school teachers.

Educators' high levels of stress have been well documented in existing literature, though little research has directly looked at comparisons of stress experiences and needs for support based on school level. The present study included 33 teachers (19 elementary and 14 middle school) from one school district who participated in semistructured interviews. Responses to questions regarding their primary source(s) of stress and their ideal solution(s) to relieve that stress revealed distinctions between elementary and middle school teachers. Elementary teachers described stress related to a sense of responsibility or need to care for students and meet their social, emotional, behavioral, and academic needs. Their ideal solution primarily involved receiving more emotional support and more support staff in the classroom to help meet all students' needs. In contrast, middle school teachers reported the majority of their stress as stemming from external demands or pressures such as test scores, high or unattainable expectations from administrators or parents, and not having enough time. Middle school teachers' ideal solutions largely entailed a shift in the use of their time, specifically to remove tasks (e.g., unnecessary staff meetings) and be able to focus their time on what matters the most (e.g., teaching students). These findings indicate that although almost all of these teachers reported being highly stressed, their sources of stress and perceived needs for support varied based on school level. Efforts to promote teacher well-being must consider school level and teachers' own perspectives on what they need in order to provide the most beneficial supports. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Symptom flares after COVID-19 infection versus vaccination among youth with PANS/PANDAS.

Background: Flares of autoimmune conditions can happen after coronavirus disease 2019 (COVID-19) infection and after COVID-19 vaccines. Patients and clinicians confront difficult decisions about vaccine safety when considering efforts to balance the risks of disease exacerbation after vaccines versus the protection that vaccines offer to potential serious life-threatening complications of COVID-19 infection. Objective: To examine symptom flares after COVID-19 infection and vaccines in the case of a form of autoimmune encephalitis that primarily affects children and young adults (pediatric acute-onset neuropsychiatric syndrome [PANS] / pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections [PANDAS]). Method: A cross-sectional study that used a survey distributed through PANS/PANDAS groups, organizations, and clinics. Results: Surveys were completed by 496 parents and/or caregivers of children with PANS/PANDAS. Among the children reported to have had a COVID-19 infection (n = 178), 43% reported severe flares of PANS/PANDAS symptoms, 23% reported mild flares, and 30% reported no symptom flares. Among those who had received COVID-19 vaccines (n = 181), 65% observed no changes in PANS/PANDAS symptoms after the vaccine, 19% reported mild flares, and 15% reported severe flares. Paired sample t-tests showed that, after COVID-19 infections, children with PANS/PANDAS were significantly more likely to experience a severe symptom flare than a mild flare or no change in symptoms. In contrast, after receiving COVID-19 vaccines, children were significantly more likely to experience no change in PANS/PANDAS symptoms than to endure a mild or severe symptom flare. In addition, children who recovered from PANS/PANDAS were significantly more likely to have no symptom change versus children who were managing the condition, both after COVID-19 infection (92% versus 25%) and vaccine receipt (100% versus 66%). Conclusion: These results support COVID-19 vaccination for most individuals with PANS/PANDAS given that the frequencies of symptom flares and setbacks after COVID-19 infection were significantly higher than after the COVID-19 vaccine. Nonetheless, further studies are needed to fully assess the risk-benefit balance and to provide a more individualized approach to disease prevention in people with immune vulnerabilities.

Untimely care: How the modern logics of coverage and medicine compromise children's health and development.

How do families manage when health care systems do not "cover" and clinicians do not acknowledge their children's condition? This article presents an ethnographic study in the Northeastern region of the United States with 20 families with children diagnosed with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS)/Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). Two of the 20 families had moved to the U.S. seeking care. The for-profit structure of the U.S. health care system resulted in costly and lengthy therapeutic journeys to access a diagnosis and adequate treatments. In the U.S., PANS/PANDAS coverage depends on legislation, advocacy, clinical characteristics of each child, and how for-profit insurance companies react to an increased demand for a given service. Many medical professionals, both in the U.S. and in other countries, refuse to acknowledge the condition or offer effective treatments that lack "acceptable" evidence. We argue that the financial logic behind coverage exists across modern health care systems and imposes restrictions and exclusions that impede access to care. Thus, untimely care, the time gap from PANS/PANDAS symptoms to diagnosis and treatment is the result of the modern logics that structure medicine and coverage. The results of this study illustrate how modern medicine and coverage fail to protect families with children with PANS/PANDAS against catastrophic expenses and often block care that would prevent developmental disruptions and losses, avoid much suffering, and even save costs to health care systems. New and controversial conditions like PANS/PANDAS highlight the importance of separating the financial logics behind proposals such as "universal health coverage" from the provision of comprehensive forms of care that acknowledge uncertainty and prioritize action and flexibility.

Implementation Challenges for Tier One and Tier Two School-Based Programs for Early Adolescents.

This mixed-method study examined the implementation and the challenges to implementation for participants in randomized controlled trials of two school-based programs for early adolescents: the Tier One Word Generation (WG) program, and the Tier Two Strategic Adolescent Reading Intervention (STARI). Levels of implementation for WG and STARI varied substantially across teachers and classrooms, with mean levels of 40% for fourth- and fifth-grade WG, 31% for sixth- and seventh-grade WG, and 47% for STARI. The three most common implementation challenges for WG were lack of time, multiple new programs/curricula happening at the same time, and time lost to testing and test prep. The three most common implementation challenges for STARI were student misbehavior, student absences, and time lost to testing and test prep. In order to succeed, efforts to find programs that work and to improve educational outcomes must address these formidable problems in U.S. public schools.

The disclosure model versus a developmental illness experience model for children and adolescents living with HIV/AIDS in São Paulo, Brazil.

Whether, how, and when children's HIV/AIDS diagnosis needs to be disclosed to them has received growing attention. This paper describes and conceptualizes how communication about HIV/AIDS influences disease knowledge and psychosocial development in a group of children and adolescents living with perinatally acquired HIV infection in an AIDS institution in São Paulo, Brazil. Data consist of the lived experience of 36 children ages 1 to 15 and was gathered through ethnographic research methodologies: participant observation and semistructured informal interviews. Results show that AIDS diagnosis is not disclosed to children, who experience a growing confusion about the interconnected meanings of sickness, medications, living at a house/institution, and having AIDS. Children younger than 6 learn to accept medication taking and to silence illness-related questions. Seven to 9-year olds perceive that the word AIDS and/or being sick are considered negative attributes, but are confused about how these relate to their lives. Preadolescents' growing awareness of the relationship between their lives and negative social values associated with AIDS produces shame and anger. Adolescents exhibit a poor understanding of the implications of HIV/AIDS for their lives and cynicism toward AIDS care, their future, and information about risks to their health. In conclusion, lack of communication about HIV/AIDS creates a context of confusion and mistrust, is detrimental to psychosocial development and coping, compromises disease knowledge, and increases vulnerability to risk behavior. Providing developmentally appropriate information about HIV/AIDS that matches children's illness experiences at all ages would eliminate the need for disclosure and reduce children's emotional distress.