Effectively Supporting Youth with Chronic Illness in Schools

Daly, Brian P.; Litke, Shannon; Kiely, Jenna R.; Jones, Paul Christian; Wargel, Katelyn; Flaspohler, Paul; Mancini, Kathryn J.

doi:10.1016/j.pcl.2022.04.013

Cited by 3 publications

(4 citation statements)

References 40 publications

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“…The Emergency Department Sickle Cell Care Coalition 50 created a point‐of‐care tool to guide sickle cell treatment (https://www.acep.org/patient-care/sickle-cell/). To support children within their immediate environments, hospital‐based SDoH programs and school partnerships could be expanded and delivered more equitably and empathically 51 . Finally, creation of a national surveillance system to inform healthcare resource allocation and research gaps may improve access to care (e.g., via coordinated care models) 4 …”

Section: Discussionmentioning

confidence: 99%

“…The effectiveness of strategies to mitigate SDoH may be limited programs and school partnerships could be expanded and delivered more equitably and empathically. 51 Finally, creation of a national surveillance system to inform healthcare resource allocation and research gaps may improve access to care (e.g., via coordinated care models). 4 Several methodological considerations are noteworthy.…”

Section: Theme Description Exemplar Quotesmentioning

confidence: 99%

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Bidirectional processes linking social determinants of health and pediatric sickle cell anemia management: A qualitative study

Long

Blakey

Amaro

et al. 2023

Pediatric Blood & Cancer

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BackgroundChildren with sickle cell anemia (SCA) have substantial medical needs and more unmet basic needs than children with other medical conditions. Despite a recent focus on social determinants of health (SDoH), there remains an incomplete understanding of the processes linking SDoH and disease management, particularly for youth with SCA. This study elucidated these processes and identified ways to mitigate deleterious effects of adverse SDoH on SCA management.MethodsParents/primary caregivers (N = 27) of children with SCA (≤12 years old) participated in semi‐structured interviews regarding SCA management and SDoH and completed quantitative measures of basic needs. Qualitative data were systematically coded and analyzed using applied thematic analysis. Quantitative data were presented descriptively.ResultsThree qualitative themes were identified. First, SCA management is bidirectionally linked with the social environment, whereby challenges of SCA management can hinder basic needs from being met, and unmet basic needs and financial hardship hinder SCA management. Second, due to limited resources, parents/caregivers are faced with difficult choices between prioritizing basic needs versus SCA management. Third, addressing material, emotional, and informational needs may improve SCA management. Quantitatively, 73% of families endorsed ≥1 basic need, including food insecurity (42%), housing instability (62%), and/or energy insecurity 19% (vs. 20%).ConclusionDespite documented associations, there remains a poor understanding of the processes linking SDoH and health. Findings underscore how day‐to‐day conditions undermine the management of SCA treatments, symptoms, and complications, limiting treatment effectiveness. Understanding these processes may inform family‐centered, health equity interventions and policies to improve living conditions, disease management, and health outcomes.

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Section: Discussionmentioning

confidence: 99%

Section: Theme Description Exemplar Quotesmentioning

confidence: 99%

Bidirectional processes linking social determinants of health and pediatric sickle cell anemia management: A qualitative study

Long

Blakey

Amaro

et al. 2023

Pediatric Blood & Cancer

View full text Add to dashboard Cite

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“…While specific empirical evidence is lacking at this time as to how best to support students with SCD in schools, several conclusions can be drawn from a larger body of work addressing the needs of students with chronic health problems. Given the prevalence of students with chronic health problems in schools, school systems and school professionals require education and training in the needs of this special population and training in and implementation of collaborative models of school‐based health care service delivery (Daly et al, 2022). Improved communication between schools and health‐care providers is beneficial to students with chronic health conditions (e.g., Bradley‐Klug et al, 2013; Power & Blom‐Hoffman, 2004; Shaw & McCabe, 2008).…”

Section: Discussion With Recommendations For School Psychologistsmentioning

confidence: 99%

“…The school‐based evaluation of a student with SCD should be conducted in concert with the student's medical personnel, including the involvement of pediatric psychologists and neuropsychologists. This is especially true as school personnel often report being unprepared to meet the needs of children with chronic illnesses (Daly et al, 2022). If the child resides in a larger metropolitan area with access to a children's hospital, chances are greater that the student may have been the recipient of a comprehensive neuropsychological evaluation that can be used to inform team special service decision making and intervention planning.…”

Section: Discussion With Recommendations For School Psychologistsmentioning

confidence: 99%

Confronting racial inequity in health and education: Supporting students with sickle cell disease

Jones,

Schmitt,

Nayyar

et al. 2023

Psychology in the Schools

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The racialized history of sickle cell disease (SCD) continues to contribute to racial disparities in healthcare and education. In the context of the racialized history of SCD, we begin by outlining subtypes of SCD and explaining that SCD is associated with chronic pain, silent cerebral infarct, overt stroke, and poor overall well‐being—all of which have implications for school functioning. A literature search was conducted to identify significant meta‐analyses, systematic reviews, and empirical articles to inform school psychologists' evaluation, service delivery, and decision‐making practices when working with students with SCD. Common negative neuropsychological and psychoeducational outcomes associated with SCD are reviewed. Finally, recommended culturally responsive practices are discussed, ahead of a conclusion that contains a call to action for school psychologists.

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Are school settings restricting access to daily physical activity for children with cystic fibrosis? Parents’ perspectives and recommendations for practice

Powell,

Woodfield,

Powell

et al. 2024

International Journal of Qualitative Studies on Health and Well

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Background Cystic Fibrosis (CF) is a genetic life limiting disease that impacts upon quality of life. An aim of CF care is to preserve lung function, with physical activity (PA) being an important part of daily airway clearance. Ensuring children have opportunities to engage in PA at school should be an important part of their daily routine. It is important to gain parental perspectives on this, as they manage the daily care for their children. This study aims to explore parents’ perceptions of school-based PA for their children with CF. Methods Parents of children with CF ( n = 10), from three regions of the UK (England, Wales and Northern Ireland) took part in online semi-structured interviews. Data were analysed using Interpretative Phenomenological Analysis (IPA). Results Although parents recognized the benefits of school-based PA for their children, systemic barriers in the school setting often inhibit daily PA for children with CF, including teachers’ misconceptions, emotional and physical barriers, and PA not being a priority. Conclusion Recommendations for practice have been developed to help engage children with CF in daily school-based PA in an inclusive way, with the hope of maintaining health outcomes for children with CF.

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Effectively Supporting Youth with Chronic Illness in Schools

Cited by 3 publications

References 40 publications

Bidirectional processes linking social determinants of health and pediatric sickle cell anemia management: A qualitative study

Bidirectional processes linking social determinants of health and pediatric sickle cell anemia management: A qualitative study

Confronting racial inequity in health and education: Supporting students with sickle cell disease

Are school settings restricting access to daily physical activity for children with cystic fibrosis? Parents’ perspectives and recommendations for practice

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