Adrien M. Winning

Purpose/Objective: The pathway from clinical trials to implementation is lengthy and often unsuccessful. Thus, identifying strategies that promote clinical implementation is necessary. The Framework for Reporting Adaptations and Modifications-Enhanced was employed to characterize adaptations to the Teen Online Problem Solving program (TOPS). The aim was to broaden program reach and adoption by aligning TOPS with the needs of the implementation context, extending delivery to a broader range of pediatric neurological conditions. Method: Providers completed surveys about commonly experienced neurocognitive challenges across diagnoses. Therapists delivering the program to non-traumatic brain injury (TBI) diagnoses were surveyed about their experiences. Reach to non-TBI diagnoses and adoption by therapists treating other diagnoses provided metrics of implementation impact. Results: Medical providers rated cognitive/communication issues as most common and identified physical limitations, concentration/attention problems, learning/school difficulties, planning/organization, and processing speed as top concerns. Twenty-five psychologists/trainees ranked the child's current neurocognitive challenges, mood and behavior concerns, and developmental level as the most important considerations for tailoring, with diagnosis ranked seventh. Of 828 patients enrolled, 354 had non-TBI diagnoses, and 245 had TBI. Four case studies illustrate adaptations. Conclusions/Implications: Findings suggest that transdiagnostic adaptation of evidence-based pediatric psychology programs may be acceptable to clinicians and facilitate broader implementation.

Objective: The aim of this study was to examine the direct and interactive effects of cognitive and family factors on psychosocial, academic, and adaptive functioning outcomes in youth with spina bifida (SB). Methods: Participants included 41 families of youth with SB (ages 3-16 years old). Caregivers reported on child functioning (i.e., executive, psychosocial, and adaptive functioning), as well as family factors, such as family environment, marital adjustment, caregiver distress, and parenting stress. Youth completed performance-based assessments of vocabulary and academic functioning. Direct effects of cognitive and family factors on youth psychosocial, academic, and adaptive outcomes were examined using hierarchical multiple regression analyses, whereas interactive effects were examined using moderation models in PROCESS. Results: Regression analyses revealed that both cognitive (i.e., executive dysfunction, vocabulary) and family (i.e., parenting stress) factors accounted for variability in youth outcomes. Interactive effects between cognitive and family factors were also revealed when predicting youth emotional and behavioral problems, as well as adaptive skills. Specifically, greater executive dysfunction was associated with greater emotional and behavioral problems in low and moderate, but not high, quality family environments. Additionally, analyses revealed that youth with higher levels of executive dysfunction generally demonstrated poorer adaptive skills, regardless of caregiver distress. However, those with low levels of executive dysfunction demonstrated poorer adaptive skills only in the presence of more caregiver distress. Conclusions: Both cognitive and family factors may contribute to adjustment outcomes in children with SB. Findings highlight the importance of developing comprehensive family-based interventions in the context of SB.

Objective: To determine growth in condition-related self-management skill mastery in youth with spina bifida (SB) over time and examine neuropsychological functioning, specifically attention and executive functioning, as a predictor of growth in skill mastery. Methods: Youth with SB (N = 140; Mage=11.43) completed a neuropsychological assessment, and parents and teachers completed informant-based measures of attention and executive functioning at Time 1 (T1). Parents reported condition-related skill mastery at T1, Time 2 (T2), and Time (T3), with timepoints occurring at 2-year intervals. Linear mixed effects growth curves were utilized to determine change in skill mastery over time with and without neuropsychological functioning predictors. Results: Condition-related self-management skill mastery significantly increased over time across subscales. Attention, working memory, and shifting abilities were significantly associated with self-management skill mastery across subscales at 11.5 years, with better neuropsychological functioning being associated with better skill mastery. Better working memory and shifting abilities at baseline predicted increases in medication skill mastery over time. Contrary to expectations, better attention and planning/organizing abilities at baseline predicted decreases in diet/exercise and catheterization skill mastery over time, respectively. Conclusions: Youth with SB exhibited gains in condition-related self-management skill mastery over time. Neuropsychological functioning was found to be a stronger predictor of skill mastery at 11.5 years than growth over time, suggesting that youth with better neuropsychological functioning master self-management skills earlier in development. Findings have important implications for clinical monitoring and interventions to support the transfer of medical responsibility and reduce medical nonadherence and secondary health complications.

Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet #Preprint #PeerReviewMe: Warning: This is a unreviewed preprint. Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn. Readers with interest and expertise are encouraged to sign up as peer-reviewer, if the paper is within an open peer-review period. Please cite this preprint only for review purposes or for grant applications and CVs (if you are the author). Background: Young childhood cancer survivors (YCCS) diagnosed and treated before age 7 are at heightened risk of developmental difficulties. As a result, their caregivers may experience stress as they navigate various educational and hospital systems, and advocate for their child’s needs. To our knowledge, there are no tailored early intervention or support programs to address the unique and multifaceted needs of YCCS and their caregivers. Digital platforms can provide anticipatory guidance and developmental resources, which may be especially impactful for families at increased risk for health and educational disparities, particularly in underserved rural and Appalachian areas. Objective: This mixed-methods study describes the usability testing of an online responsive parenting program for caregivers of YCCS, called the Preparing for Life and Academics for Young cancer survivors (PLAY) program. Methods: Twelve caregivers of YCCS (9 biological parents, 2 grandfathers, 1 legal guardian; 33% rural; 33% Appalachian; 83% White) participated in a virtual usability session utilizing a task-based, think-aloud method. This session was followed by completion of the System Usability Scale (SUS), responses to reaction cards to describe their experiences with the platform, and a semi-structured interview. Two trained coders used rapid analysis and consensus methods to identify themes. Results: Overall, caregivers found the platform easy to use (92% SUS>68; M = 82.2, SD = 14.45). Most caregivers provided positive feedback in response to reaction cards (e.g., useful, appealing, valuable) to describe the platform. Qualitative findings highlighted that most caregivers perceived the platform as easy to use, and several participants described it as a helpful educational tool. Participants noted potential platform improvements should include accessibility features (e.g., closed captioning for videos), content, and usability on mobile devices. Conclusions: With further improvements, digital platforms such as PLAY may be a promising avenue to bridge access to care for high-need groups and ultimately, to improve child neurodevelopmental outcomes.

Background: Although the academic difficulties of children with spina bifida (SB) are well‐documented, there is limited literature on parents' views of their children's school experiences and school‐related supportive services. Thus, the current study examined parents' school‐related concerns, as well as perceived areas of strength, among children with SB.Methods: Using a mixed‐methods approach, 30 families (29 mothers and 19 fathers) of children with SB (ages 8–15 years) completed questionnaires and interviews. Content analysis was used to generate themes from interview data about parents' school‐related concerns and perceptions of their child's strengths.Results: Overall, six themes emerged when assessing both parents' concerns and perceived strengths. Some parents did not endorse school concerns or strengths for their child. However, other parents described concerns related to academic performance, cognitive abilities, lack of school support, missed school and/or class time and disengagement, as well as strengths such as academic skills, cognitive abilities, persistence, self‐advocacy and agreeableness. Despite parents' concerns about their children's academic performance, quantitative data revealed that less than 50% of children had received a neuropsychological evaluation and/or academic accommodations; additional quantitative data supported the qualitative findings.Conclusions: The mixed‐methods approach used in this study provides a richer understanding of parents' experiences in the school setting when they have a child with SB. Results can inform clinical practice, identifying a need to improve academic support for children with SB and help parents manage education‐related stressors.

For youth with spina bifida (SB) there is a growing need to understand how responsibilities for healthcare are transferred from family- to self-management over time. The current study examined trajectories of responsibility for medical tasks in youth with SB across adolescence, as well as executive functioning/attention and parenting behaviors as predictors of growth. As part of a larger, longitudinal study, 140 youth with SB (ages 8–15 at Time 1; M_age = 11.43) reported on their responsibility for relevant medical tasks across five time points. Attention and executive functioning were assessed via performance-based and parent/teacher-report methods. Parenting behaviors consisted of acceptance, behavioral control, and psychological control, and were assessed via observational and parent-report. Growth curve analyses revealed significant increases in youth medical responsibility across all SB tasks over time. Attention, executive functioning, maternal behavioral control, and paternal psychological control emerged as predictors of growth parameters in responsibility for communicating about SB and managing healthcare appointments. Results indicated that youth with SB obtain increasing responsibility for their healthcare over time. The transfer of responsibility for SB management may differ based on individual (i.e., the child’s neuropsychological abilities) and family level (i.e., parenting behaviors) factors. Further research is needed to understand how growth in medical responsibility relates to changes in other aspects of SB self-management across development, such as medical adherence.

Objective: Research demonstrates the death of a child can be particularly traumatic for parents with long-lasting effects, yet the impact of losing an infant in the NICU remains understudied. This article aims to examine parent perceptions of emotional, social, occupational, familial, and physical impacts of their infant’s death in the NICU and to provide insight into the psychosocial needs of parents at this difficult time. Method: Twenty-nine mothers and 16 fathers representing 30 infants who died in a large, Midwestern, Level IV NICU, opted-in to interviews as part of a larger pilot study. Mothers and fathers participated an average of 38.45 ( SD = 16.73, range = 3–70) and 37.06 ( SD = 6.91, range = 3–62) months after death, respectively, and answered questions pertaining to the impact of infant loss. Three researchers used content analysis to produce themes describing the impact of infant loss on parents. Results: Parents described both negative and positive effects, underscoring both risk and resilience associated with bereavement. Findings highlight several similarities with families who experience the death of an older child, as well as some shared experiences between mothers and fathers. Results highlight both pain and growth in NICU parents following the death of their infant. Conclusions: Providers must thoughtfully incorporate family-centered communication, education, and preparation regarding bereavement, both as end of life approaches and following the death. Care should not conclude with the death but should continue to support parents and families as they navigate long-term grieving processes. Implications for Impact Statement: Parents describe both positive and negative changes in their lives as a result of their infant’s death in the NICU, including occupational, social, emotional, and health-related changes. Parents also note differing grief trajectories and use of both formal and informal coping strategies. These findings reflect both pain and growth from their experience and highlights value of long-term bereavement care which may involve parent input, pediatric psychologists, and palliative care providers.

Background: Central nervous system (CNS)‐directed treatments can cause long‐term academic, social, and emotional difficulties for children with cancer. However, limited research has examined the emergence of problems longitudinally and has often stratified risk by diagnosis alone. Therefore, this study compared competence and adjustment in children, who did and did not receive CNS‐directed treatment, over the first 3 years following a cancer diagnosis.Procedure: Mothers, fathers, and children (ages 5–18 years at diagnosis) from 217 families reported on the child's competence (academic, social) and adjustment (anxious/depressed, withdrawn/depressed) near a new cancer diagnosis or relapse and 3 years later. Children were categorized into CNS‐directed treatment (n = 112; including cranial radiation, intrathecal chemotherapy, and/or neurosurgery) and non‐CNS‐directed treatment (n = 105) groups.Results: At enrollment, there were few differences in competence and emotional adjustment among children based on treatment or diagnostic group. At 3 years, mothers and fathers reported poorer social competence for the CNS‐directed treatment group, and fathers reported poorer school competence for the CNS‐directed treatment group. Over time, father ratings of social competence increased for the non‐CNS‐directed treatment group, but not the CNS‐directed treatment group. While father ratings of academic competence declined for the CNS‐directed treatment group, mother ratings declined the most for children diagnosed with a brain tumor. All children demonstrated higher anxious/depressed scores over time.Conclusions: CNS‐directed treatment may be a valuable indicator to identify childhood cancer survivors at risk for poor competence during early survivorship. Follow‐up screening and supportive services are recommended, as well as additional longitudinal research.