Oncology's Silent Caregivers: A Mixed-Methods Exploration of the Experiences, Outcomes, and Unmet Needs of Caregiving Youth of a Parent With Cancer.

BACKGROUND: Cancer affects the whole family system causing reorganization of functioning and responsibilities where children may take on a caregiving role. In the United States, an estimated 204 000 to 475 000 caregiving youth provide multifaceted, extended care in oncology. This results in both positive and negative outcomes for youth-spanning multiple domains of health. OBJECTIVE: The aim of this study was to explore the caregiving experiences, outcomes, and unmet needs of caregiving youth (aged 12-24 years) in oncology. METHODS: An explanatory sequential mixed-methods study design was used. Fifty-two adults who lived with a parent with cancer as a child were recruited via social media and asked to complete an online survey. A subsample of 18 individuals reporting high to very high amounts of caregiving were subsequently interviewed. RESULTS: The mean reported caregiving youth age was 16.13 (±4.86) years. They provided care approximately 22.43 h/wk for approximately 3.04 years. Most (71.2%) reported high to very high amounts of caregiving activity. The highest reported categories of unmet needs were information, family, feelings, friends, and time out/recreation. Qualitative findings included 4 themes: stepping into the role, family communication, dealing with feelings, and a new separateness. CONCLUSIONS: Identified needs included a desire for more information to aid in uncertainty, better communication within the family, needing someone to help them process their feelings, and peer-to-peer support. IMPLICATIONS FOR PRACTICE: It is important for nurses and researchers to be aware of and acknowledge the needs of families dealing with cancer and aid in the development and implementation of tailored interventions to support caregiving youth.

Evaluating governance in a clinical and translational research organization.

Institutional Development Awards for Clinical and Translational Research (IDeA-CTR) networks, funded by NIH/NIGMS, aim to advance CTR infrastructure to address historically unmet state and regional health needs. Success depends on the response to actionable feedback to IDeA-CTR leadership from network partners and governance groups through annual surveys, interviews, and governance body recommendations. The Great Plains IDeA-CTR applied internal formative meta-evaluation to evaluate dispositions of 172 governance recommendations from 2017 to 2021. Results provided insights to improve the classification and quality of recommendations, credibility of evaluation processes, responsiveness to recommendations, and communications and governance in a complex CTR network comprising multiple coalitions.

Maternal-Child Microbiome and Impact on Growth and Neurodevelopment in Infants and Children: A Scoping Review.

BACKGROUND: Pathologic changes in the microbiome (dysbiosis) have been implicated in affecting the growth and neurodevelopment of infants and children. There is evidence to suggest that prenatal and postnatal stressors may be a factor in dysbiosis and there is also a growing body of evidence to suggest that interventions may reduce this negative impact. A scoping review was undertaken to identify association between maternal and/or child microbiome with child growth and neurodevelopment. Additionally, intervention studies such as use of nutritional supplementation and its impact on the microbiome, growth and neurodevelopment were reviewed. METHODS: An exhaustive literature search identified 654 relevant citations. After review of abstracts, 557 were eliminated, and 97 remained for full text review. We identified and reported on 42 articles which met inclusion criteria. RESULTS: Seven studies examined associations between microbiome and neurodevelopment and 36 studies evaluated anthropometric measurements, most commonly weight, and microbiota relationships. One study evaluated both growth and neurodevelopment and microbiota. Fourteen studies evaluated supplemental nutrients. Preterm, low birth weight (LBW), and very low birth weight (VLBW) infants were most studied. Findings were inconclusive for consistent associations between microbiota and growth and neurodevelopment. Further, there were no consistent conclusive changes with prescribed treatment interventions. DISCUSSION: There is a need for high-quality longitudinal studies evaluating repeated developmental assessment measures using consistent microbial analysis techniques to inform conclusions regarding the association between microbiome and infant and child growth and neurodevelopment. Additional intervention studies that may mitigate dysbiosis are warranted.

Research Audit on Clinical Utility of Dimensional Disruptive Mood and Behavior Psychopathologies in Child and Adolescent Psychiatry Practice.

To investigate the utility of dimensional psychopathologies of disruptive mood and behavior disorders (DBDs) by applying latent profile analysis (LPA) for characterization of youth referred to the tertiary outpatient clinic of child and adolescent psychiatry clinic and pharmacological treatment choices. One hundred fifty-eight children and adolescents with significant DBDs symptoms participated. Core dimensional psychopathologies of DBDs (irritability, callous-unemotional trait, and reactive-proactive aggressive behavior), DSM diagnoses, prescribed medications, and behavioral and emotional problems (Child Behavior Checklist, CBCL) were measured at baseline (clinic intake) and at 3-month follow-up. Latent Profile Analysis (LPA) was applied to characterize the study population based on the levels and interrelations among the core dimensional DBDs psychopathologies. Following LPA, the differences in clinical and treatment features between the latent classes were analyzed. LPA revealed two latent classes based on severity of DBDs symptoms. Class 1 (the moderate group) was characterized by relatively low scores on all trans-diagnostic indicators, whereas class 2 (the severe/critical group) showed higher levels of the dimensional psychopathologies and the majority of CBCL subscales. In addition, the severe/critical group was more often prescribed antipsychotic medications, and also experienced more frequent medication changes (addition, increasing the dose, and trial of different medications). Our findings suggested that application of LPA to a cluster of dimensional DBDs psychopathologies may provide valuable characterization of the youths referred to a tertiary outpatient child and adolescent psychiatric clinic, and offer insight into the providers' decision making on psychotropic medications, by overall severity of these psychopathologies rather than by single categorical diagnosis or single externalizing psychopathology.

Baseline Characteristics of a Dyadic Cohort of Mothers With Chronic Pain and Their Children.

OBJECTIVES: A growing body of research has demonstrated a robust link between parental chronic pain and child pain and psychological function. Although the association between parent and child pain is strong, there are limited data to understand environmental and behavioral processes that account for the association and how this develops over time. This longitudinal cohort study was designed to understand the potential mechanisms that confer risk or resilience for chronic pain among child offspring of mothers with chronic pain. METHODS: The current paper presents baseline data on the cohort to describe the pain and psychosocial characteristics of mothers with chronic pain and their 8- to 12-year-old children. A total of 400 mothers with chronic pain and their children were enrolled into the longitudinal study and completed measures of pain, physical, and psychosocial functioning. RESULTS: Mothers reported a range of pain and pain-related disability and were grouped into 4 pain grades (PGs) representing different pain and disability levels. Mothers in these groups differed on rates of widespread pain and opioid use. Maternal PGs also differed by physical function, fatigue, sleep disturbance, and psychological function. Most children in this sample reported pain and psychosocial symptoms in the nonclinical range, and child variables did not differ by maternal PG. Maternal disability and function were concurrently associated with child psychosocial function. DISCUSSION: While maternal PGs map broadly onto several dimensions of maternal functioning, they were not significantly related to child pain or function. Results may help identify potential protective factors in the intergenerational transmission of risk for chronic pain.

Sleep disturbances after pediatric traumatic brain injury: a systematic review of prevalence, risk factors, and association with recovery.

STUDY OBJECTIVES: Sleep is vital for brain development and healing after injury, placing children with sleep-wake disturbances (SWD) after traumatic brain injury (TBI) at risk for worse outcomes. We conducted a systematic review to quantify SWD after pediatric TBI including prevalence, phenotypes, and risk factors. We also evaluated interventions for SWD and the association between SWD and other posttraumatic outcomes. METHODS: Systematic searches were conducted in MEDLINE, PsychINFO, and reference lists for English language articles published from 1999 to 2019 evaluating sleep or fatigue in children hospitalized for mild complicated, moderate, or severe TBI. Two independent reviewers assessed eligibility, extracted data, and assessed risk of bias using the Newcastle-Ottowa Score for observational studies. RESULTS: Among 966 articles identified in the search, 126 full-text articles were reviewed, and 24 studies were included (11 prospective, 9 cross-sectional, and 4 case studies). Marked heterogeneity was found in study populations, measures defining SWD, and time from injury to evaluation. Studies showed at least 20% of children with TBI had trouble falling or staying asleep, fatigue, daytime sleepiness, and nightmares. SWD are negatively correlated with posttraumatic cognitive, behavioral, and quality of life outcomes. No comparative intervention studies were identified. The risk of bias was moderate-high for all studies often related to lack of validated or objective SWD measures and small sample size. Heterogeneity precluded meta-analyses. CONCLUSIONS: SWD are important morbidities after pediatric TBI, though current data are limited. SWD have implications for TBI recovery and may represent a modifiable target for improving outcomes after pediatric TBI.

Sleep Measure Validation in a Pediatric Neurocritical Care Acquired Brain Injury Population.

BACKGROUND/OBJECTIVE: Lingering morbidities including physical, cognitive, emotional, and psychosocial sequelae, termed the Post-Intensive Care Syndrome, persist years after pediatric neurocritical care (PNCC) hospitalization. Sleep disturbances impact other Post-Intensive Care Syndrome domains and are under-evaluated to date due to a lack of appropriate measurement tools. The present study evaluated the validity of the Sleep Disturbance Scale for Children (SDSC) to address the growing need for assessing sleep problems after PNCC. METHODS: We conducted a prospective observational study of youth aged 3-17 years with acquired brain injury (N = 69) receiving care through longitudinal PNCC programs at two tertiary academic medical centers. Parents completed the SDSC and provided proxy reports of internalizing symptoms, health-related quality of life (HRQOL), fatigue, pain behavior, and cognitive function within 3 months of hospital discharge. Evidence for the validity of the SDSC was established by utilizing the full sample for psychosocial measure comparisons and by comparing SDSC outcomes by severity (Low Risk, Mild-Moderate Risk, and High Risk defined by reported standardized T-scores). RESULTS: Internal consistency of the SDSC was good (α = .81). Within the full sample, increased sleep disturbances on the SDSC were significantly correlated with Post-Intensive Care Syndrome measures, including worse physical (r = .65), psychological (r = .62), and cognitive (r = - .74) sequelae. Youth in the High Risk group evidenced greater dysfunction in mental acuity, pain behavior, internalizing symptoms, and social engagement. Findings revealed both statistically and clinically significant impacts of sleep disturbances as measured by the SDSC on HRQOL. CONCLUSIONS: The SDSC is a valid and reliable measure for assessing sleep disturbances in children after PNCC. Results support the use of the SDSC to measure sleep disturbances after PNCC. Targeted interventions for sleep disturbances may be key to overall patient recovery.

More than Mental Health: Parent Physical Health and Early Childhood Behavior Problems.

OBJECTIVE: Caring for young children is a physically demanding task, and some evidence suggests parental physical limitations may impact the parent-child relationship and child behavioral development, but research examining this dynamic is nascent. METHODS: This study aims to explicate the role of general parent physical health problems in child disruptive behavior outcomes. A model that included physical and mental health, parenting style and self-efficacy, and child behavior symptom ratings was derived. The tenability of the model was assessed using Pearson's correlations, followed by structural equation modeling using data from 375 parents with a child between 18 months and 5 years. RESULTS: After several modifications to the initial model, findings revealed that higher levels of parent self-reported physical and mental health concerns indirectly influence child behavior symptoms through different pathways. Impaired parent physical health was associated with poorer parental self-efficacy and more disruptive child behavior, whereas increased parent mental health concerns were associated with a more negative parenting style and lower self-efficacy, which was related to more child behavior symptoms. CONCLUSION: Findings elucidate the need for increased awareness and screening of parent physical health limitations in pediatric primary care. Furthermore, appropriate interventions among parents with physical health problems may target different aspects of parenting than routinely discussed.

Trajectories of pediatric sleepiness and their associations with health-related quality of life.

The need for sleep in children has sparked extensive research, with inconclusive support for an association between sleep duration and sleep quality and health-related quality of life (HR-QOL). Daytime sleepiness, which captures a child's subjective sleep experience, has seldom been explored. Latent class growth analysis (LCGA) was employed to identify longitudinal trajectories of children's sleepiness. Trajectories were utilized to assess their association with HRQOL. The present sample included 158 children and their self-reports of sleepiness and HRQOL collected at three time points across an academic year. Results provided support for three trajectories of sleepiness, with significant associations between trajectory and later HRQOL. Post hoc tests revealed significant differences in HRQOL between trajectories. Children with high and stable sleepiness-experienced impairments in HRQOL comparable to children with chronic health conditions. Implications include the establishment of daytime sleepiness as a pervasive state with both statistical and clinical significance.

The (Parental) Whole Is Greater Than the Sum of Its Parts: A Multifactorial Model of Parent Factors in Pediatric Chronic Pain.

Parents play a critical role in children's experience of, and recovery from, chronic pain. Although several parental factors have been linked to child pain and functioning, these factors are typically examined in isolation or as moderators or mediators. Structural equation modeling affords the opportunity to examine the extent to which parental factors are interrelated, and if there are differential associations among parental factors and child outcomes. Based on extant literature, a unified model of parental factors, including chronic pain status, physical functioning, responses to child pain, and psychological factors, and their effect on child pain and functioning, was conceptualized. This model was evaluated using structural equation modeling based on data from 146 dyads recruited from a multidisciplinary pain clinic. Modifications to model iterations were made based on theoretical and statistical justification. The final model revealed associations among all parental factors, with significant loadings on child pain and functioning. Findings indicated the conceptual model was supported, with the exception of parent responses to child pain. Findings support the inclusion of parent chronic pain status and physical and psychological functioning as part of a comprehensive assessment of youth with chronic pain and may inform new parental intervention targets to improve child outcomes. PERSPECTIVE: A unified structural equation model indicated parents' own chronic pain characteristics and physical and psychological functioning represent important factors associated with child pain and functioning. Current family-based interventions that often primarily focus on parent responses to child pain may need to be adapted to more comprehensively address parental factors.