Barriers to Care and Perceived Need for Mental Health Services Among Adolescent and Emerging Adult Survivors of Pediatric Brain Tumors.

Purpose: Pediatric brain tumor survivors (PBTS) commonly experience mental health challenges, which can be exacerbated during adolescence and emerging adulthood (AEA). We examined survivors and caregivers' perceived need for mental health services and barriers to receiving mental health care. Methods: Families completed surveys to assess perceived need for mental health services, socioemotional impairment, and barriers to mental health services. Survivors were between 13 and 25 years of age and were at least 5 years from diagnosis. Results: Sixty-nine caregiver-PBTS dyads participated, as well as 18 survivors and 20 caregivers who participated individually. Approximately half of survivors were male (n = 57, 52.3%), 85% (n = 93) were White, and their average age was 19.31. Most caregivers (n = 63, 70.8%) and survivors (n = 55, 63.2%) endorsed need for services for the survivors. Adolescents endorsed more barriers related to perceived helpfulness, t(18) = 2.3, p = 0.03, d = 0.54, and effects of services, t(18) = 3.8, p < 0.001, d = 0.88, than their caregivers. Emerging adults, t(34) = 2.4, p = 0.02, d = 0.41, endorsed more content barriers than their caregivers.. Discussion: Both survivors and their caregivers reported obstacles to accessing mental health services such as perceived lack of need, concerns regarding the effectiveness and usefulness of services, and limited knowledge about the content of services. Psychoeducation and psychosocial screening can support families in understanding survivors' need for mental health services.

Caregivers matter: Neurological vulnerability for pediatric brain tumor survivors.

Background: Pediatric brain tumor survivors (PBTS) are at risk of worse quality of life (QOL) due to the impact of neurotoxic treatments on the developing nervous system. Parenting factors such as protectiveness have been linked to worse QOL in childhood cancer survivors generally, but have yet to be explored for PBTS. We examined whether parenting behaviors moderated the association between neurotoxic treatment and QOL for PBTS. Methods: PBTS (n = 40; ages 10-25) and their caregivers (n = 47) completed measures of parenting behaviors including warmth (support/connectedness) and psychological control (protectiveness) and QOL. We divided the sample into moderate/high and low neurotoxicity groups based on chart review using the Pediatric Neuro-Oncology Rating of Treatment Intensity and examined moderator effects. Results: Survivor-reported primary caregiver warmth moderated the relationship between neurotoxicity and caregiver-reported QOL. Moderate/high neurotoxicity was associated with lower caregiver-reported QOL only when survivor-reported primary caregiver warmth was low, P = .02. Similar results were found for survivor-reported QOL. Caregiver-reported psychological control moderated the association between neurotoxicity and caregiver-reported QOL such that neurotoxicity only affected QOL at high levels of psychological control, P = .01. Conclusions: Heightened associations between parenting and QOL in the context of neurotoxic treatments underscore the need to better support PBTS. Findings are consistent with research suggesting that family factors may be particularly important for children with other neurological insults. Limitations include cross-sectional design and a small/heterogeneous clinical sample with low ethnic/racial diversity. Prospective studies are needed to refine evidence-based screening and develop psychosocial intervention strategies to optimize QOL for PBTS and their families.

Online Intervention for Caregivers of Children with Early Traumatic Brain Injury: Pilot Trial.

OBJECTIVE: To assess the feasibility and acceptability of an online parenting-skills program for caregivers of young children with traumatic brain injury (TBI). Positive parenting contributes to recovery following early TBI and social and emotional development in typically developing children. Yet, few interventions have been designed to support psychosocial recovery and subsequent development after early TBI. METHODS: This study protocol was registered with clinicaltrials.gov (NCT05160194). We utilized an academic hospital's Trauma Registry to recruit caregivers of children, ages 0-4 years, previously hospitalized for TBI. The GROW intervention integrated six online learning modules with videoconference meetings with a coach to review and practice skills while receiving in vivo coaching and feedback. Interactive modules addressed strategies for responsive parenting, stimulating cognition, and managing parenting stress. Enrollment and retention rates served as feasibility metrics and satisfaction surveys assessed acceptability. RESULTS: 18 of 72 families contacted (25%) consented, and 11 of 18 (61%) completed the intervention and follow-up assessments. All participants rated the intervention as helpful and indicated that they would recommend the intervention to others. All endorsed a better understanding of brain injury and how to optimize their child's recovery and development. Both coaches rated intervention delivery as comparable to traditional face-to-face treatment. CONCLUSIONS: Low levels of uptake and initial engagement underscore the challenges of intervening with caregivers following early TBI, which likely were exacerbated due to the COVID-19 pandemic. High levels of acceptability and perceived benefit support the potential utility of GROW while highlighting the need to improve accessibility and early engagement.

Characteristics of Critically Ill Infants at the End of Life in the Neonatal Intensive Care Unit.

Objectives: About 16,000 infants die in the neonatal intensive care unit (NICU) each year with many experiencing invasive medical treatments and high number of symptoms.1 To inform better management, we characterized diagnoses, symptoms, and patterns of care among infants who died in the NICU. Method: Retrospective electronic medical record (EMR) review of 476 infants who died following admission to a large regional level IV NICU in the United States over a 10-year period. Demographic, symptom, diagnosis, treatment, and end-of-life characteristics were extracted. Results: About half of infants were male (55.9%, n = 266), average gestational age was 31.3 weeks (standard deviation [SD] = 6.5), and average age at death was 40.1 days (SD = 84.5; median = 12; range: 0-835). Race was documented for 65% of infants, and most were White (67.0%). One-third of infants (n = 138) were seen by fetal medicine. Most infants experienced pain through both the month and week before death (79.6%), however, infants with necrotizing enterocolitis had more symptoms in the week before death. Based on EMR, infants had more symptoms, and received more medical interventions and comfort measures during the week before death compared with the month prior. Only 35% (n = 166) received a palliative care referral. Conclusions: Although the medical profiles of infants who die in the NICU are complex, the overall number of symptoms was less than in older pediatric populations. For infants at high risk of mortality rate, providers should assess for common symptoms over time. To manage symptoms as effectively as possible, both timely and continuous communication with parents and early referral to palliative care are recommended.

More to the story than executive function: Effortful control soon after injury predicts long-term functional and social outcomes following pediatric traumatic brain injury in young children.

OBJECTIVE: To examine the impact of early traumatic brain injury (TBI) on effortful control (EC) over time and the relationship of EC and executive functioning (EF) to long-term functional and social outcomes. METHOD: Parents of children (N = 206, ages 3-7) with moderate-to-severe TBI or orthopedic injuries (OIs) rated EC using the Child Behavior Questionnaire at 1 (pre-injury), 6, 12, and 18 months post-injury. Child functioning and social competence were assessed at 7 years post-injury. Mixed models examined the effects of injury, time since injury, and their interaction on EC. General linear models examined the associations of pre-injury EC and EC at 18 months with long-term functional and social outcomes. Models controlled for EF to assess the unique contribution of EC to outcomes. RESULTS: Children with severe TBI had significantly lower EC than both the OI and moderate TBI groups at each post-injury time point. Both pre-injury and 18-month EC were associated with long-term outcomes. Among those with low EC at baseline, children with moderate and severe TBI had more functional impairment than those with OI; however, no group differences were noted at high levels of EC. EC had main effects on parent-reported social competence that did not vary by injury type. CONCLUSIONS: Findings suggest that EC is sensitive to TBI effects and is a unique predictor of functional outcomes, independent of EF. High EC could serve as a protective factor, and as such measures of EC could be used to identify children for more intensive intervention.

Professional stakeholders' perceptions of barriers to behavioral health care following pediatric traumatic brain injury.

OBJECTIVE: To examine professional stakeholders' perspectives of barriers to behavioral health care (BHC) follow-up and telepsychology after pediatric traumatic brain injury (TBI). METHODS: Twenty-nine professionals participated in a focus group (FG) or key informant interview (KII) between January and March 2020. Professionals answered questions about facilitators and barriers to BHC follow-up and telepsychology. Given widespread telepsychology implementation since COVID-19, a follow-up survey assessing telehealth perceptions since the pandemic was sent out in December 2020. Nineteen professionals completed the survey. RESULTS: Professionals identified individual (e.g., family factors, insurance coverage/finances, transportation/distance, availability, planning follow-up care) and system-level (e.g., lack of access to BHC providers) barriers to BHC post-injury. Possible solutions, like collaborative follow-up care, were also identified. Generally, clinical professionals have favorable impressions of telepsychology and utilized services as a delivery modality for clinical care. Though telepsychology could reduce barriers to care, professionals also expressed concerns (e.g., technology issues, security/safety) and challenges (e.g., funding, accessibility, training/licensure for clinicians) with implementing telepsychology. CONCLUSION: Barriers identified highlight the need for context-specific solutions to increase BHC access, with telepsychology generally recognized as a beneficial modality for BHC. Future work should continue to focus on understanding barriers to BHC and potential solutions after pediatric TBI.

A mixed-methods analysis examining child and family needs following early brain injury.

Purpose:To understand child and family needs following TBI in early childhood, 22 caregivers of children who were hospitalized for a moderate to severe TBI between the ages of 0 and 4 within the past 10 years (M = 3.27 years; Range = 3 months to 8 years) participated in a needs assessment.Methods: Through a convergent study design, including focus groups (FG), key informant interviews (KII), and standardized questionnaires, caregivers discussed challenges and changes in their child's behaviors and functioning in addition to resources that would be helpful post-injury. Standardized questionnaires assessing current psychological distress and parenting stress in addition to open-ended questions about their general experience were completed.Results: Results indicated some families continue to experience unresolved concerns relating to the child's injury, caregiver wellbeing, and the family system after early TBI, including notable variation in caregiver reported psychological distress and parenting stress. Caregivers noted unmet needs post-injury, such as child behavior management and caregiver stress and coping.Conclusion: Early TBI can have a long-term impact on the child, caregivers, and family system. Addressing the needs of the whole family system in intervention and rehabilitation efforts may optimize outcomes following early TBI. Study results will inform intervention development to facilitate post-injury coping and positive parenting.IMPLICATIONS FOR REHABILITATIONEarly TBI can result in unmet needs that have a lingering impact on the child, caregiver, and family.Caregivers need information and resources that address their own distress and stressors related to changes in the child post-injury.Our study suggests that stress management and self-care skills are possible targets of intervention for caregivers of children who experienced an early TBI.

Bidirectional effects of behavior problems and parenting behaviors following adolescent brain injury.

Purpose/Objective: Existing evidence suggests that the relationship between adolescent behavior problems following traumatic brain injury (TBI) and injury-related family burden may be bidirectional, with increased child behavior problems contributing to greater family burden over the first year postinjury and vice versa. We extended existing evidence by prospectively examining reciprocal influences between parent-adolescent interactions and adolescent behavior problems over the initial 2 years postinjury. Research Method/Design: Participants included 117 adolescents ages 12-17 with moderate-to-severe TBIs and their parents who participated in a randomized controlled trial. At baseline, adolescent-parent dyads completed a videotaped problem-solving task that yielded composites of negativity, effective communication, and warmth. Parents also completed a structured interview and problem checklists. Families repeated assessments at 6, 12, and 18 months postbaseline. Bidirectional associations between observed parenting behavior and adolescent behavior were examined with autoregressive cross-lagged panel analyses collapsed across the trial arms. Results: One cross-lagged model was significant, with higher observed effective communication predicting fewer externalizing behavior problems at subsequent time points, and fewer externalizing behavior problems predicting more effective communication. Other models indicated that effects were unidirectional, with observed parenting behaviors predicting externalizing behavior and everyday functioning. Conclusions/Implications: The bidirectional relationship between effective communication and adolescent externalizing behavior suggests a transactional model in pediatric TBI in which effective communication leads to reduced adolescent behavior problems and reduced behavior problems lead to improved communication over time. Findings yielded stronger evidence for parenting effects as compared to adolescent behavior effects, providing further support for clinical interventions targeting parent-adolescent interactions following TBI. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Impact of central nervous system-directed treatment on competence and adjustment among children in early cancer survivorship.

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.

A Mixed-Methods Analysis of Family Perceptions of Neuropsychological Evaluation and Resources for Pediatric Brain Tumor Survivors.

OBJECTIVE: Neuropsychological testing is often recommended for pediatric brain tumor survivors, yet little is known about perceptions of testing and resources. The purpose of this study is to examine survivor and caregiver perceptions about neuropsychology and resources and identify factors associated with receipt of neuropsychological testing. METHOD: Survivors and their families (N = 55) completed questionnaires on demographics and family functioning. The Neurological Predictive Scale was used to rate treatment intensity and expected impact on neuropsychological functioning. Chi squares and logistic regression were used to examine the associations between demographic, disease, and treatment factors and receipt of neuropsychological testing. Qualitative interviews (N = 25) were completed with a subset of families and coded with thematic content analysis and a multicoder consensus process with high inter-rater reliability (kappas .91-.93). RESULTS: The majority of survivors received neuropsychological testing. Survivors were more likely to receive neuropsychological testing if they were younger and if their caregivers had less than a college education and lower income. Qualitatively, families identified neurocognitive concerns. Some families reported that neuropsychological testing was helpful in clarifying deficits or gaining accommodations, while other families had difficulty recalling results or identified barriers to services. To mitigate the impact of deficits, families implemented metacognitive strategies and advocated for their survivor at school. Families desired more resources around the transition to adulthood and more opportunities for connection with other survivors. CONCLUSIONS: Many families valued insights from neuropsychological services yet identified room for further improvement to address barriers and ensure accessibility and comprehensibility of neuropsychological findings.

Behavior Problems Following Childhood TBI: The Role of Sex, Age, and Time Since Injury.

OBJECTIVE: To examine the frequency of behavioral problems after childhood traumatic brain injury (TBI) and their associations with injury severity, sex, and social environmental factors. SETTING: Children's hospitals in the Midwestern/Western United States. PARTICIPANTS: 381 boys and 210 girls with moderate (n = 359) and severe (n = 227) TBI, with an average age at injury of 11.7 years (range 0.3-18) who were injured ≤3 years ago. DESIGN: Secondary data analysis of a multistudy cohort. MAIN MEASURES: Child Behavior Checklist (CBCL) administered pretreatment. RESULTS: Thirty-seven percent had borderline/clinical elevations on the CBCL Total Problem Scale, with comparable rates of Internalizing and Externalizing problems (33% and 31%, respectively). Less parental education was associated with higher rates of internalizing, externalizing, and total problems. Time since injury had a linear association with internalizing symptoms, with greater symptoms at longer postinjury intervals. Younger boys had significantly higher levels of oppositional defiant symptoms than girls, whereas older girls had significantly greater attention-deficit hyperactivity disorder symptoms than boys. CONCLUSIONS: Pediatric TBI is associated with high rates of behavior problems, with lower socioeconomic status predicting substantially elevated risk. Associations of higher levels of internalizing symptoms with greater time since injury highlight the importance of tracking children over time.

Telepsychotherapy With Children and Families: Lessons Gleaned From Two Decades of Translational Research.

The novel coronavirus, COVID-19, has led to sweeping changes in psychological practice and the concomitant rapid uptake of telepsychotherapy. Although telepsychotherapy is new to many clinical psychologists, there is considerable research on telepsychotherapy treatments. Nearly 2 decades of clinical research on telepsychotherapy treatments with children with neurological conditions has the potential to inform emerging clinical practice in the age of COVID-19. Toward that end, we synthesized findings from 14 clinical trials of telepsychotherapy problem-solving and parent-training interventions involving more than 800 children and families with diverse diagnoses, including traumatic brain injury, epilepsy, brain tumors, congenital heart disease, and perinatal stroke. We summarize efficacy across studies and clinical populations and report feasibility and acceptability data from the perspectives of parents, children, and psychotherapists. We describe adaptation for international contexts and strategies for troubleshooting technological challenges and working with families of varying socioeconomic strata. The extensive research literature reviewed and synthesized provides considerable support for the utility of telepsychotherapy with children with neurological conditions and their families and underscores its high level of acceptability with both diverse clinical populations and providers. During this period of heightened vulnerability and stress and reduced access to usual supports and services, telepsychotherapy approaches such as online family problem-solving treatment and online parenting skills training may allow psychologists to deliver traditional evidence-based treatments virtually while preserving fidelity and efficacy.

El nuevo coronavirus, COVID-19, ha conducido a cambios radicales en la psicología. práctica y el rápido consumo concomitante de telepsicoterapia. A pesar de que la telepsicoterapia es nueva para muchos psicólogos clínicos, existe una investigación considerable sobre tratamientos de telepsicoterapia. Casi dos décadas de investigación clínica sobre los tratamientos de telepsicoterapia con niños con afecciones neurológicas tienen la potencial para informar la práctica clínica emergente en la edad de COVID-19. Hacia ese fin, sintetizamos los resultados de 14 ensayos clínicos de resolución de problemas de telepsicoterapia e intervenciones de capacitación para padres que involucran a más de 800 niños y familias con diagnósticos diversos que incluyen lesión cerebral traumática, epilepsia, tumores cerebrales, enfermedad cardíaca congénita y accidente cerebrovascular perinatal. Resumimos la eficacia entre los estudios y poblaciones clínicas e reportamos datos de viabilidad y aceptabilidad desde las perspectivas de padres, hijos y psicoterapeutas. Describimos adaptacion para contextos internacionales y estrategias para resolver problemas tecnológicos y trabajar con familias de estratos socioeconómicos variables. La extensa literatura de investigación revisada y sintetizado proporciona un apoyo considerable para la utilidad de la telepsicoterapia con niños con afecciones neurológicas y sus familias y subraya su alto nivel de aceptabilidad con diversas poblaciones clínicas y proveedores. Durante este período de mayor vulnerabilidad y estrés y menor acceso a los apoyos habituales y servicios, enfoques de telepsicoterapia como tratamiento em línea para resolución de problemas familiares y la capacitación en habilidades para padres en línea pueden permitir que los psicólogos brinden tratamientos tradicionales basados en evidencia virtualmente mientras se preserva la fidelidad y la eficacia.

Bereaved Parents' Perceptions of Infant Suffering in the NICU.

CONTEXT: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe their infant is suffering may alter treatment goals based on their perceptions; however, it is unknown how parents come to believe that their infant may be suffering. OBJECTIVES: To examine bereaved parents' perceptions of infant suffering in the NICU. METHODS: Parents completed a qualitative interview exploring their perceptions of the level of suffering that their infant experienced at the end of life. Parents whose infant died in a large Midwestern Level IV regional referral NICU from July 2009 to July 2014 were invited to participate. Thirty mothers and 16 fathers from 31 families (31 of 249) participated in telephone interviews between three months and five years after their infant's death. RESULTS: Four themes emerged from the qualitative analysis: 1) the presence/absence of suffering, 2) indicators of suffering, 3) temporal components of suffering (trajectory), and 4) influence of perceived suffering on parents, infants, and clinical decision making. CONCLUSION: Parents used signs exhibited by infants, as well as information they received from the health care team to form their perceptions of suffering. Perceived suffering followed different trajectories and influenced the decisions that parents made for their infant. Soliciting parent perspectives may lead to improvements in the understanding of infant well-being, particularly suffering, as well as how parents rely on these perceptions to make treatment decisions for their infant.

A Survivor's Journey: Preliminary efficacy of an online problem-solving therapy for survivors of pediatric brain tumor.

BACKGROUND: Although pediatric brain tumor survivors are at high risk for a variety of psychosocial and neurocognitive late effects, there are few evidence-based interventions to address their needs. The purpose of this study was to test the efficacy of an online problem-solving intervention on improving the quality of life and executive dysfunction among adolescent and young adult brain tumor survivors. PROCEDURE: A Survivor's Journey was adapted from a similar intervention for survivors of traumatic brain injuries, and involved self-guided web modules providing training in problem-solving as a tool for coping with everyday challenges, as well as weekly teleconferences with a trained therapist. Survivors (n = 19) between the ages of 13 and 25, and their caregivers, completed standardized measures of their emotional and behavioral functioning, executive functioning, and quality of life before and after the 12- to 16-week intervention. RESULTS: Participation in the intervention led to significant improvements in self-reported overall (Mpre  = 62.03, SDpre  = 17.67, Mpost  = 71.97, SDpost  = 16.75; d = 0.58, P = 0.01) and physical quality of life (Mpre  = 63.13, SDpre  = 21.88, Mpost  = 75.00, SDpost  = 21.33; d = 0.55, P < 0.01) as well as parent-reported emotional quality of life (Mpre  = 65.00, SDpre  = 28.72, Mpost  = 76.15, SDpost  = 23.47; d = 0.43, P = 0.03). Greater improvement was noted in those who were diagnosed before the age of seven and those with average or above average estimated IQs. Current age did not moderate outcomes. CONCLUSIONS: Online problem-solving therapy may be efficacious in improving pediatric brain tumor survivors' quality of life; however, further research with a comparison group is needed. Online interventions such as Survivor's Journey may decrease barriers to evidence-based psychosocial care for brain tumor survivors.

Clinician perspectives delivering telehealth interventions to children/families impacted by pediatric traumatic brain injury.

PURPOSE: Technological advances have made the delivery of psychological interventions via web-based platforms increasingly feasible. In recent years, there has been growth in the delivery of psychological interventions through web-based modalities, that is, telepsychology. Although there is evidence supporting the usability and feasibility of telepsychology for a range of populations, there is limited literature on clinician perceptions delivering telepsychology, particularly to pediatric rehabilitation populations. In this mixed-methods study, we report on clinician perspectives and experiences delivering telepsychology to children/families impacted by pediatric traumatic brain injury. METHOD: Seventeen clinicians (psychologists and advanced psychology doctoral students) who delivered telepsychology interventions to children/families impacted by pediatric brain injuries completed surveys and interviews. RESULTS: Overall, clinicians reported that telepsychology was equivalent to face-to-face treatment in many regards (e.g., therapeutic alliance, weekly progress, child/family engagement, and establishing rapport). Clinicians reported a number of advantages of telepsychology over face-to-face interventions for this pediatric population including greater ease of scheduling, increased understanding of the family and home environments, and less caregiver stigma of behavioral health care. Disadvantages of telepsychology included difficulties reading nonverbal cues, logistical/technological issues, and greater disruptions during sessions. CONCLUSIONS: Findings provide an important foundation for future investigations examining the merits of telepsychology versus traditional treatment for both pediatric rehabilitation populations. (PsycINFO Database Record (c) 2019 APA, all rights reserved).