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Background: Evolving and emerging contexts require interventions to respond and adapt. The COVID-19 pandemic necessitated a quick adaptation from in-person to virtual delivery. Not only were there few programs able to transition to virtual delivery, there was a lack of parent-focused CSA-prevention programs. The current study describes the responsive adaptation of a parent-focused child sexual abuse (CSA) prevention module (Smart Parents-Safe and Healthy Kids; SPSHK) for virtual delivery. Design and methods: This two-phase study used mixed-methods to inform and pilot test adaptations to the virtual module. In Phase 1, parenting providers with and without experience delivering SPSHK (N = 110) completed anonymous surveys and a subsample (n = 27) subsequently participated in brief interviews elaborate on challenges and needed adaptations for virtual platforms. Results: Providers indicated the greatest technological difficulties with parents' access to technology noting the inability to use a screensharing function. Thus, providers recommended no adaptations for the virtual delivery of SPSHK. In Phase 2, the virtual SPSHK module was piloted with nine parents. Results demonstrated virtual SPSHK was acceptable and feasibly implemented. Pre-posttest assessments indicated increases in parents' CSA-related awareness and use of protective behaviors. Conclusion: The current study suggests the promise of virtual SPSHK implementation and may act as a blueprint for other parent-focused CSA-prevention programs, but also more general parenting programs, considering virtual delivery.
RESUMO
OBJECTIVE: STXBP1-related disorders are rare genetic epilepsies and neurodevelopmental disorders, but the impact of symptoms across clinical domains is poorly understood. Disease concept models are formal frameworks to assess the lived experience of individuals and their families and provide a basis for generating outcome measures. METHODS: We conducted semistructured, qualitative interviews with 19 caregivers of 16 individuals with STXBP1-related disorders and 7 healthcare professionals. We systematically coded themes using NVivo software and grouped concepts into the domains of symptoms, symptom impact, and caregiver impact. We quantified the frequency of concepts throughout the lifespan and across clinical subgroups stratified by seizure history and developmental trajectories. RESULTS: Over 25 hours of interviews, we coded a total of 3626 references to 38 distinct concepts. In addition to well-recognized clinical features such as developmental delay (n = 240 references), behavior (n = 201), and seizures (n = 147), we identified previously underrepresented symptoms including gastrointestinal (n = 68) and respiratory symptoms (n = 24) and pain (n = 30). The most frequently referenced symptom impacts were autonomy (n = 96), socialization (n = 64), and schooling (n = 61). Emotional impact (n = 354), support (n = 200), and daily life & activities (n = 108) were highly cited caregiver impacts. We found that seizures were more commonly referenced in infancy than in other age groups, while behavior and socialization were more likely to be referred to in childhood. We found that caregivers of individuals with ongoing seizures were less likely to reference developmental delay, possibly due to the relatively high impact of seizures. SIGNIFICANCE: STXBP1-related disorders are complex conditions affecting a wide range of clinical and social domains. We comprehensively mapped symptoms and their impact on families to generate a comprehensive disease model as a foundation for clinical endpoints in future trials.