Developing a Tool for Measuring Parent Knowledge and Barriers to Supportive School Integration After Diagnosis of Childhood Cancer.

Background: Children treated for cancer are at risk for long-term neurocognitive late effects that can impact school attainment, employment, and quality of life. Obtaining formal education support can be critical to later success but may depend upon parent knowledge and ability to access needed support. The purpose of this study was to develop and evaluate the psychometric properties of a scale to measure the perceived support that parents received upon their child's return to school during or after cancer treatment. Methods: Exploratory factor analyses evaluated the construct validity of survey items. Cronbach's alpha was used to test the internal consistency and independent t-tests evaluated the concurrent criterion validity of resulting subscales. Results: The exploratory factor analyses resulted in two subscales, Barriers to Supportive School Integration (13 items) and Parent School Integration Knowledge (three items). All items loaded at least 0.49 onto each factor, with Cronbach's alpha values of 0.927 and 0.738, respectively. The Knowledge subscale additionally demonstrated concurrent criterion validity; higher Knowledge subscale scores were found among parents who reported receiving information about treatment-related cognitive/school problems from healthcare providers (p < .001). Discussion: The Parent School Integration Knowledge and Barriers to Supportive School Integration subscales demonstrated preliminary evidence for good construct validity and internal consistency. These subscales may be used in future research to assess parent knowledge, barriers to receiving support, and overall experience of supportive school integration after the diagnosis of pediatric cancer.

A Rocky Landscape: Challenges with College Transition and Completion for Adolescents and Young Adults with Cancer.

Purpose: Adolescents and young adults with cancer have lower college attendance and graduation rates than their peers, but the reasons for this and extent to which cancer impacts college is unknown. This study explores post-high school experiences of young adults with cancer, detailing impacts of diagnosis and treatment on higher education attainment. Materials and Methods: A convergent mixed-methods design disseminated nationally obtained data regarding post-high school transition experiences in adults diagnosed with cancer before age 25. Results: Participants (n = 47) indicated struggles with employment and education; 81% attended some college, but 44% have not completed their degree, citing logistic challenges and lasting effects of therapy as major barriers. Nearly 20% of participants reported that cancer made higher education too difficult, so they did not attend, and most of these individuals (66.6%) are unemployed. Qualitative findings detail that accessing appropriate accommodations was made difficult by a lack of understanding from college faculty and staff. Conclusion: For many, cancer presents a barrier to higher education attainment; changing course of studies, repeating classes, and switching majors may impact degree completion. A minority of students with cancer access educational supports or get assistance obtaining these resources from their medical or high school team. Changes to clinical practice to ensure supports for young adults transitioning from high school have the potential to create improved pathways to higher education success. Additionally, supporting college faculty and staff understanding of cancer and its late effects may be a low-cost, high-impact way to improve adolescent/young adult college success.

Integrative review of school integration support following pediatric cancer.

PURPOSE: This study aims to understand parents' experiences of school integration support for their child's transition to K-12 schooling during or after cancer treatment. METHODS: This integrative literature review used PubMed, CINAHL, PsycINFO, and Embase databases and included articles from January 2000 to July 2022 describing parent experiences with support from healthcare providers, school faculty/systems, and school integration programs. This review was guided by an adapted School Re-Entry Model and used constant comparison to identify common themes and guide synthesis. The Johns Hopkins Evidence and Quality Guide was used to appraise article quality and level of evidence. RESULTS: Thirty-five articles were included in the final review: seventeen qualitative, fourteen quantitative, and four mixed or multi-method designs. Parents reported experiences receiving support from healthcare providers, school faculty/systems, school integration programs, and "other" sources. Parents reported both facilitators and barriers to communication, knowledge, and the process of receiving school integration support. CONCLUSIONS: Parents found neuro/psychologists highly supportive but reported limited support from other healthcare providers. Most parents reported mixed experiences with school faculty and reported many barriers to school system support. Parents reported positive experiences with school integration programs; however, limited programs were available. IMPLICATIONS FOR CANCER SURVIVORS: Future programs and research should focus on addressing identified barriers and facilitators of school integration support. Further work is also needed to understand a wider range of parent experiences during school integration.

Addressing Schooling in Children With Cancer-It's Everybody's Job, So It's Nobody's Job: An Explanatory Mixed-Methods Evaluation.

Background: Neurocognitive deficits from childhood cancer treatment are common, long-standing, and negatively impact multiple domains of life leading to challenges with schooling and education. The purpose of this study is to describe caregiver-reported experiences of neurocognitive effects from therapy and to understand the roles clinicians play in this domain in the United States. Methods: An explanatory mixed-methods study of 174 caregivers of children with cancer provided insight into how clinicians provided information on neurocognitive effects of treatment and their experiences with school-related resources. Clinicians provided descriptions of how they provide this information and assist families with accessing services or transition back to school after therapy. Results: Caregivers identified that physicians, nurses, and social workers primarily provide information regarding neurocognitive effects of treatment. Over half (55.9%) of families seek additional information elsewhere and 49.4% report doing so because the information they received from their team was inadequate. Nearly 40% of caregivers report accessing school supports feels like a constant fight and over 40% were not offered homebound educational services by their school. Qualitative interviews with providers found that clinicians focus on therapy-related physical symptoms of treatment and only discuss neurocognitive effects when prompted by families or when children are returning to school. Discussion: Clinicians' focus on physical symptoms and just-in-time thinking when it comes to providing education or school-related services may explain why families endorse infrequent education on the topic and challenges with school reintegration. Improved education for clinicians on this topic, integration of interdisciplinary teams, and new clinical practice models may improve the family experience.

Educating Childhood Cancer Survivors: a Qualitative Analysis of Parents Mobilizing Social and Cultural Capital.

Childhood cancer impacts the child patient as well as the family and caregivers throughout diagnosis, treatment, and survivorship. Secondary analysis of qualitative data revealed the critical role of parents' adaptability and flexibility when navigating advocacy decisions about their child's schooling following diagnosis and through survivorship. After cancer, adjusting to school means adjusting to a new normal creating challenges related to curriculum, peers, and educators that can affect quality of life. Critically, parents' adjustment to a new advocacy role emerged as an important consideration. Concepts of social and cultural capital aid in understanding the experiences of parents whose children have returned to school following their successful treatment for pediatric cancer. Framed in this way, how parents mobilize (or do not mobilize) these forms of capital as they devise strategies to support their children are understood. This study interprets parent reports and actions as taken often in the hope that they will help both their own child and others that follow, creating mutual benefit for the network of people touched by cancer.

Barriers to Schooling in Survivorship: The Role of Neuropsychological Assessment.

PURPOSE: Pediatric cancer survivorship rates continue to improve, although disease- and treatment-related neurocognitive impacts substantively affect survivors' educational access and availability for learning. Receiving formal educational supports substantially improves survivors' academic progress and graduation rates; however, parents of survivors report obtaining such support is stressful, in part due to limited knowledge on their part and that of their oncology providers. METHODS: Parents (N = 195) of pediatric survivors across the United States were surveyed to explore specific barriers to obtaining appropriate educational supports and the facilitating role of the oncologist. RESULTS: Parent-reported barriers included limited access to formal educational supports, under-referral to neuropsychology services, and need for more information about available supports and how best to advocate for these, when needed. Not only were few survivors (35.4%) referred for neuropsychological evaluation, standard of care for many pediatric survivors, but survivors were more than five times more likely to be retained in grade compared with the national retention rate. When obtained, parents reported that the neuropsychological consultation and associated report were helpful in increasing their own understanding and addressing barriers to obtaining adequate supports for their children. CONCLUSION: Given the important role of neuropsychological evaluation for survivors and their families, bringing referral rates more in line with national guidelines represents a critical target for oncologists. With adequate training in relevant issues, the oncologist is positioned to be a key support to survivors and their families in ensuring access to neuropsychological services and reducing barriers to an appropriate education.

Tools of the trade to address schooling related communication needs after childhood cancer: A mini-review with consideration of health disparity concerns.

Over the last 60 years, success rates in treating childhood cancers have grown dramatically from 10% to greater than 85%. Negative effects of treatments, however, place survivors at risk for neurocognitive deficits that can make school challenging. Evidence shows that receiving special education services can benefit affected children. However, communication and knowledge gaps among families and service providers can present access challenges. This mini-review considers the literature on communication between medical providers, families, and school professionals and identifies recommended tools for improving success and efficiency. Additional recommendations are made regarding improving access and adoption of such tools including the need for adaptations and expansions of available resources to address health disparity concerns for an increasingly linguistically and culturally diverse population.

Schooling in survivorship: Understanding caregiver challenges when survivors return to school.

OBJECTIVE: Schooling after treatment can hold challenges for survivors of childhood cancer and caregivers who may need to act as advocates on their behalf. This study seeks to understand caregiver experiences of survivor's school-related challenges. This understudied area is critical given the 85% survivor rate for those diagnosed with childhood cancer and the disproportionate risk of learning difficulties faced by those with brain tumor or who receive therapy that targets the central nervous system. METHODS: Affected caregivers participated in open-ended interviews addressing school experiences during survivorship. Following preliminary analysis using a grounded theory approach, interviewees and other stakeholders from education, medical, and foundation communities participated in focus groups. Member-check activities explored the validity of identified themes and a model derived from interview data describing schooling challenges during survivorship. RESULTS: Caregivers reported schooling-related experiences were often stressful and such stressors recurred during survivors' ongoing education. They reported a lack of appropriate knowledge among themselves, school staff, and clinicians about issues their survivor faced as well as concerns about communication and uncertainties about the processes required to attain appropriate services. These themes of knowledge, communication, and process issues were embedded within family approaches to coping with difficulties as well as the specific types of late effects each survivor faced. CONCLUSIONS: The proposed model and clinical implications provide a foundation for future research and intervention development. Such work is needed to more effectively support survivors and their caregivers with difficulties that arise during schooling following treatment for childhood cancer.

Dissociable controlled retrieval and generalized selection mechanisms in ventrolateral prefrontal cortex.

How does ventrolateral prefrontal cortex (VLPFC) control mnemonic processing? Alternative models propose that VLPFC guides top-down (controlled) retrieval of knowledge from long-term stores or selects goal-relevant products of retrieval from among competitors. A paucity of evidence supports a retrieval/selection distinction, raising the possibility that these models reduce to a common mechanism. Here, four manipulations varied semantic control demands during fMRI: judgment specificity, cue-target-associative strength, competitor dominance, and number of competitors. Factor analysis revealed evidence for a metafactor that accounted for common behavioral variance across manipulations and for functional variance in left mid-VLPFC. These data support a generalized control process that selects relevant knowledge from among competitors. By contrast, left anterior VLPFC and middle temporal cortex were sensitive to cue-target-associative strength, but not competition, consistent with a control process that retrieves knowledge stored in lateral temporal cortex. Distinct PFC mechanisms mediate top-down retrieval and postretrieval selection.

Pediatric functional magnetic resonance imaging: progress and challenges.

Functional magnetic resonance imaging (fMRI) in the pediatric population promises to provide novel insights into the nature of both normal and abnormal functional brain development as well as changes in brain function due to various interventions. Although acquisition of fMRI data from children is associated with a number of methodological challenges, primarily compliance and head motion, good quality data can be obtained. For example, conditioning and personal interactions can improve compliance, and motion reduction techniques can successfully reduce artifacts due to head motion. Analysis of pediatric fMRI data also involves challenges regarding spatial normalization and characterization of the hemodynamic response across development. Substantial progress has been made in understanding cognitive function and developmental disorders in children, but attention to the methodological issues raised in this review and continued investigations in this area are expected to result in further progress.