Browsing by Author "Ciccarelli, Mary R."

Now showing 1 - 4 of 4
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    BE YOUR OWN BOSS: A CHRONIC DISEASE SELF-MANAGEMENT PROGRAM
    (Office of the Vice Chancellor for Research, 2012-04-13) Gladstone, Erin B.; Bhargava, Aakriti; Ciccarelli, Mary R.
    Objective: Describe the pilot of a peer-led chronic disease self-management workshop for youth aged 13-24 years old. Background: Fifteen to eighteen percent of children in the United States live with a chronic health condition (Perrin et al., Journal of the American Medical Association 2007, 297:2755). The Stanford chronic disease self-management program (CDSMP) has demonstrated improved self-care and health outcomes in older adults. Alberta Health Services has adapted this program from Stanford University for youth and young adults. CYACC is col-laborating with Alberta to evaluate the effectiveness of the adapted version in adolescents and young adults. Methods: Train the trainer sessions were completed to develop an initial cadre of lay leaders to implement the workshop sessions. Participants with any chronic condition attend 2 hour peer-led sessions once per week for six weeks. During the sessions, individuals with a variety of chronic diseases learn the skills needed in self-management of their condition and mainte-nance of general well-being and life’s activities. Data is collected on self-efficacy, pain, adherence, and other outcomes through pre- and post- as-sessment surveys. Results: Fourteen individuals participated in the pilot phase of the pro-gram; 5 in Lafayette, IN and 8 in Indianapolis, IN. A total of 14 pre-surveys were collected, while 10 post-surveys were collected. Analyses of the sur-veys show beneficial topics , while also indicating which topics should receive additional focus. Areas of the program identified as needing attention include recruitment, risk management, transportation issues, participant dropout rates, logistics of workshops, continued training of lay leaders, and stand-ardization of survey responses. Conclusion: The pilot study identified the importance and need for a self-management program for youth and young adults with chronic conditions. This program has the potential to improve health and self-management in the study population. Limitations of the program were addressed and will be improved for the next round of workshops.
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    COVID-19 Pandemic Highlights Access Barriers for Children with Autism Spectrum Disorder
    (Wolters Kluwer, 2021-09) McNally Keehn, Rebecca; Tomlin, Angela; Ciccarelli, Mary R.; Pediatrics, School of Medicine
    Engagement in early intensive behavioral intervention has been shown to improve outcomes and lower lifetime care costs for children with autism spectrum disorder (ASD). However, in most regions of the United States, a medical diagnosis of ASD is necessary to access these interventions. A shortage of expert diagnosticians, inefficient evaluation models, and long evaluation wait times result in substantial delays in ASD diagnosis and markedly later entry into services. These delays are increased for children from diverse racial and socioeconomic backgrounds and underresourced regions. Although systemic barriers require ongoing attention, we highlight here the critical role that insurers play in limiting intervention access through application of inappropriate medical review criteria for ASD diagnostic evaluations. Specifically, to consider a medical diagnosis as valid and authorize specialized interventions, many insurers mandate the use of a specific assessment tool(s) instead of allowing qualified clinicians to use a flexible evidence-informed evaluation protocol. This has become especially problematic during COVID-19, when evaluation practices have rapidly shifted to meet demands for remote and/or socially distanced procedures through implementation of telehealth and use of novel diagnostic tools that are not yet accepted by insurers. When insurers erroneously deem ASD diagnoses as invalid, children are unable to benefit from needed interventions, resulting in a cascade of deleterious consequences.
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    Evaluation of Race and Ethnicity Across a Statewide System of Early Autism Evaluation
    (Elsevier, 2023-03) Martin, Ann Marie; Ciccarelli, Mary R.; Swigonski, Nancy; McNally Keehn, Rebecca; Pediatrics, School of Medicine
    We evaluated racial and ethnic disparities across the Early Autism Evaluation Hub system, a statewide network for autism diagnosis. Our findings suggest that this system has the potential to reduce longstanding disparities in autism spectrum disorder diagnosis for children from racial and ethnic minority backgrounds.
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    Mixed Methods Analysis of Caregiver Satisfaction With the Early Autism Evaluation Hub System
    (Sage, 2024-12-12) Martin, Ann Marie; Huskins, Jordan; Paxton, Angela; Nafiseh, Amira; Ciccarelli, Mary R.; Keehn, Brandon; McNally Keehn, Rebecca; Pediatrics, School of Medicine
    Community-based methods for autism evaluation may be one solution for ameliorating delays in diagnosis, which are exacerbated for children from minoritized backgrounds. However, limited research has examined caregiver satisfaction with community-based models of autism evaluation. Thus, our objective was to use a mixed-methods approach to investigate caregiver satisfaction with their child's autism evaluation conducted across a statewide system of primary care autism diagnosis. Results indicated overall high satisfaction and no significant differences were found between satisfaction total scores nor caregiver stress and any child/family demographic variables. Satisfaction and stress were also not related to autism diagnostic outcome, clinician diagnostic certainty, or diagnostic accuracy. Qualitative suggestions for evaluation improvement include more thorough explanation of diagnosis and service recommendations. Overall, our findings indicate high caregiver satisfaction with multiple dimensions of community-based autism evaluation in the primary care setting, suggesting this may be a feasible and sustainable model that caregivers find acceptable.