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Transgender and gender diverse patients who are assigned female at birth may request menstrual management to alleviate an increased dysphoria due to menses. The objective of this study is to describe the initiation and use over time of menstrual management methods (MMMs) in transgender and gender diverse adolescents.A retrospective chart review was conducted of patients in a multidisciplinary pediatric gender program from March 2015 to December 2020 who were assigned female at birth, identified as transgender or gender diverse, and had achieved menarche. A descriptive statistical analysis was performed.Of 133 patients, 119 (90%) identified as transgender male, 11 (8%) as gender nonbinary, and 3 (2%) as another gender identity. Mean age was 15 (standard deviation 1.6) years. Only 12 (9%) patients had ever been sexually active. During the study period, 48 (36%) used gender-affirming testosterone. At the initial visit, 114 (86%) patients were not using an MMM. Of 80 patients who initiated a new MMM, 3 (4%) chose continuous oral contraceptive pills, 65 (83%) used norethindrone acetate (NETA), and 9 (11%) planned levonorgestrel intrauterine device (IUD) insertion. At 1 year, 56 patients were using NETA and 20 had an IUD in place.This study provides data on MMM choice in transgender and gender diverse adolescents using these methods almost exclusively for menstrual management and not contraception. Although few patients were using an MMM at baseline, most opted to start a method when given the opportunity. The most common methods were NETA or an levonorgestrel IUD.

Psychosocial screening can facilitate the identification of families who have difficulty adjusting to and managing serious pediatric illness. Despite siblings' roles within the family and increased psychosocial risk, a systematic approach to screening siblings of youth with cancer remains rare. One barrier to systematic sibling screening is the lack of a validated screener. We aimed to establish initial validity of the new parent-reported Psychosocial Assessment Tool (PAT) Sibling Modules for siblings ages 0-2, 3-4, 5-9, and 10+.Families (N = 64) completed the PAT Sibling Modules and the Strengths and Difficulties Questionnaire (SDQ) regarding siblings' functioning at cancer diagnosis (13-23 items, depending on age version) and 6 months later (17-42 items). Cross-sectional and longitudinal analyses examined internal consistency and convergent and predictive validity of the PAT Sibling Modules.Baseline and follow-up versions of the modules have strong internal consistency (Kuder-Richardson 20 range: 0.82-0.93) and convergent validity at diagnosis (r-values ≥0.4, p-values0.01) and follow-up (r-values0.4, p-values0.05). Predictive validity was supported by significant correlations between baseline PAT Sibling Module scores and 6 month SDQ scores (r = 0.86, p 0.001).Findings provide initial evidence that the PAT Sibling Modules are valid measures of sibling psychosocial risk. Availability of a validated screener is a first step toward addressing siblings' unmet psychosocial needs.

To describe menstrual history, associated dysphoria, and desire for menstrual management in transgender male and gender diverse adolescents who were assigned female at birth DESIGN: Retrospective chart review SETTING: Tertiary care children's hospital PARTICIPANTS: All patients seen in a multidisciplinary pediatric gender program from March 2015 through December 2020 who were assigned female at birth, identified as transgender male or gender nonbinary, and had achieved menarche INTERVENTION: None MAIN OUTCOME MEASURES: Patient demographics, menstrual history, interest in and prior experiences with menstrual management, parental support, and concerns about menstrual management RESULTS: Of the 129 included patients, 116 (90%) identified as transgender male and 13 (10%) as gender nonbinary, with an average age of 15 (SD 1.6) years. Almost all (93%) patients reported menstrual-related dysphoria. Most (88%) were interested in menstrual suppression. The most common reasons for desiring suppression were achievement of amenorrhea (97%) and improvement of menstrual-related dysphoria (63%).Most gender diverse patients assigned female at birth reported dysphoria associated with menses and desired menstrual suppression. This information can encourage physicians to raise this topic and offer menstrual management for gender diverse patients who experience distress related to menses, especially for those who are not ready for or do not desire gender-affirming hormonal treatment. Future research is needed to better understand patients' experiences with menses and to determine the optimal menstrual management methods. This could be an important intervention to improve outcomes for this vulnerable population.

Objective To examine as secondary analyses the effect the FAMily-Oriented Support (FAMOS) family therapy program on reducing parent-reported medical traumatic stress in the sub-sample of pediatric cancer survivors, age 2–5 years. Methods The FAMOS study was a national multicenter randomized controlled trial with all four pediatric oncology departments in Denmark (Clinicaltrials.gov [NCT02200731]). Families were randomized in parallel design (1:1) to intervention or usual care. The FAMOS program includes seven home-based psychotherapeutic sessions and is based on family systems therapy to address the individuals in the family system using cognitive behavioral, problem-solving and goal-setting techniques. Questionnaires were completed by parents at baseline, 6, and 12 months. In linear mixed-effects models, the effect of FAMOS on reducing children’s trauma-related behavior after 6 and 12 months was examined in 62 children (31 in the intervention and 29 in the control group, respectively). It was also examined if a trauma-related behavior effect was mediated through reduced symptoms of depression in mothers and fathers, respectively. Results On average, children in the intervention group experienced significantly larger decreases in trauma-related behaviors at 6 and 12 months than the control group (predicted mean difference –3.89, p = .02 and –6.24, p = .003, respectively). The effect on trauma-related behavior was partly mediated through reduced symptoms of depression in mothers, but not fathers. Conclusions Adding to previously reported positive effects of the FAMOS intervention on parents’ symptoms of post-traumatic stress and depression, significant improvements were found in young children’s trauma related-behavior. Further research is needed to develop therapy for children with cancer.

Objective Psychosocial screening is recommended to connect siblings of youth with cancer to psychosocial services, but the lack of validated sibling-specific screening tools is a barrier to routine screening. The current study aimed to validate and establish a clinical cutoff for the recently developed Psychosocial Assessment Tool (PAT) Sibling Module follow-up version to address this barrier. Methods Parents (N = 246) completed the PAT Sibling Module follow-up version for all siblings within their families ages 0–17 years (N = 458) at three time points between 6- and 24-month post-cancer diagnosis. For one target sibling within each family aged 8–17 years, parents also completed the Strengths and Difficulties Questionnaire, and the target sibling completed the Child PTSD Symptom Scale. Cross-sectional and longitudinal analyses examined internal consistency and convergent and predictive validity. Receiver operator characteristic analyses were used to establish a maximally sensitive and specific clinical cutoff. Results Internal consistency was acceptable for all age versions (Kuder-Richardson 20s ≥ 0.79), except for the ages 0–2 version, which had low internal consistency at 18 months post-diagnosis (Kuder-Richardson 20 = 0.57). Convergent (r values >0.7, p values 0.6, p values Conclusions The PAT Sibling Module follow-up version is a reliable and valid screener for sibling psychosocial risk following cancer diagnosis. Validation of a sibling-specific screener and establishment of a clinical cutoff are necessary first steps to addressing siblings’ unmet psychosocial needs and improving trajectories of sibling functioning.

Objective The Psychosocial Assessment Tool (PAT) is a well-validated, brief screener of family psychosocial risk. Since 2014 a web-based version of the PAT (WebPAT) has been available for use by clinicians and researchers, but the psychometric properties have not been examined. The objective of this article was to examine the factor structure and internal consistency of the WebPAT, which was administered to caregivers of youth with cancer. Methods The WebPAT was administered to 1,252 caregivers of youth with cancer across 29 institutions. Confirmatory factor analysis (CFA) was used to examine the factor structure of the WebPAT. Internal consistencies of the total and subscale scores were examined via the Kuder–Richardson 20 coefficient. The distribution of total PAT score across the three risk categories of the Pediatric Psychosocial Preventative Health Model (PPPHM) was also examined. Results The CFA supported the original seven-factor structure of the PAT (Family Structure, Social Support, Child Problems, Sibling Problems, Family Problems, Stress Reactions, and Family Beliefs). Internal consistencies were strong for the total PAT score and four subscales (Social Support, Child Problems, Sibling Problems, and Family Problems). The distribution of total PAT scores across PPPHM risk categories was consistent with prior research. Conclusions The WebPAT is a psychometrically sound screener of psychosocial risk in families of youth with cancer. Healthcare providers can use the WebPAT to assess families’ psychosocial risk and guide the provision of psychosocial care. Future research should evaluate the implementation of the PAT and identify barriers and facilitators to implementation.

BACKGROUND Few studies have examined the implementation of the International Society for Pediatric and Adolescent Diabetes (ISPAD) Clinical Practice Consensus Guidelines for the Psychological Care of Children and Adolescents with Type 1 Diabetes. OBJECTIVE To collect benchmark data on psychosocial staffing and implementation of the ISPAD guidelines across U.S. pediatric diabetes clinics. METHODS Medical (n = 95; 77 endocrinologists and 18 advance practice providers) and psychosocial (n = 86; 43 social workers and 43 psychologists) providers from 98 of 115 contacted clinics completed an online survey (85% response rate). Providers reported the number of psychosocial staff and rated the adequacy of psychosocial staffing, quality of psychosocial care, and adherence to the ISPAD guidelines in their clinics. χ2 tests and ANOVA were used to examine differences across clinic size and across medical and psychosocial providers. RESULTS Clinics averaged a total of ∼4 hours per week of psychosocial provider time per 100 patients with type 1 diabetes. Only 27% of providers agreed that psychosocial staffing was adequate, and 35% described their psychosocial care as comprehensive. Implementation of the ISPAD guidelines varied across clinics, with minimal differences across clinic size. Medical providers reported that evidence-based psychological assessment and interventions were delivered consistently by CONCLUSION Psychological care in U.S. pediatric type 1 diabetes clinics does not consistently meet the ISPAD guidelines, and many clinics lack adequate psychosocial staff. These benchmark data are a foundational step to improve psychosocial care for pediatric patients with type 1 diabetes.

This article characterizes the educational needs of parents following fetal or neonatal congenital heart disease (CHD) diagnosis and generates recommendations for meeting these needs. Online crowdsourcing methods were used to collect qualitative data from 95 parents of children with CHD regarding their needs for education and preparation following fetal or neonatal diagnosis. Data were analyzed using qualitative methods and themes were organized around the substructure of met and unmet needs. Two themes represented consistently met needs, whereas 10 themes represented needs that were either inconsistently met or consistently unmet. Parents reported needing more information about social, emotional, and financial supports, preparation for long-term care, and guidance toward reputable online resources. Parents also provided recommendations for meeting these needs. Parents' needs for education and preparation following CHD diagnosis are much broader in scope than what they currently receive. Addressing these may support parental coping and active participation in medical decision-making.· CHD counseling after diagnosis may provide opportunities to promote parents' mental health.. · Guidelines recommend that this counseling should include emotional and decision-making support, however, it is unclear what parents actually receive.. · This study found that parents' needs for education and preparation following CHD diagnosis are much broader in scope than what they currently receive..

Objective: The COVID-19 pandemic has disrupted traditional health care, including pediatric health care. We described the impact of the pandemic on disparities in pediatric health care engagement. Methods: Using a population-based cross-sectional time-series design, we compared monthly ambulatory care visit volume and completion rates (completed vs no-show and cancelled visits) among pediatric patients aged 0-21 years in 4 states in the mid-Atlantic United States during the first year of the COVID-19 pandemic (March 2020–February 2021) with the same period before the pandemic (March 2019–February 2020). We used unadjusted odds ratios, stratified by visit type (telehealth or in-person) and sociodemographic characteristics (child race and ethnicity, caregiver primary language, geocoded Child Opportunity Index, and rurality). Results: We examined 1 556 548 scheduled ambulatory care visits for a diverse pediatric patient population. Visit volume and completion rates (mean, 70.1%) decreased during the first months of the pandemic but returned to prepandemic levels by June 2020. Disparities in in-person visit completion rates among non-Hispanic Black versus non-Hispanic White patients (64.9% vs 74.3%), patients from socioeconomically disadvantaged versus advantaged communities as measured by Child Opportunity Index (65.8% vs 76.4%), and patients in rural versus urban neighborhoods (66.0% vs 70.8%) were the same during the remainder of the first year of the pandemic as compared with the previous year. Concurrent with large increases in telehealth (0.5% prepandemic, 19.0% during the pandemic), telehealth completion rates increased. Conclusions: Disparities in pediatric visit completion rates that existed before the pandemic persisted during the pandemic. These findings underscore the need for culturally tailored practices to reduce disparities in pediatric health care engagement.

Objective Caregiver resilience in the context of childhood cancer treatment has been described using cross-sectional and retrospective studies, but little is known about prospective predictors of resilience outcomes. We examined associations of demographics, cancer-related variables, and intrapersonal and interpersonal factors at diagnosis (family psychosocial risk, perceived social support, and healthcare self-efficacy) and psychosocial services provided during treatment with caregiver resilience outcomes at the end of treatment. Methods For a study validating a family psychosocial risk screener, 314 primary caregivers completed the measures at diagnosis of their child (aged 0-17 years) and when cancer treatment ended. Resilience outcomes were ratings of distress, posttraumatic stress, and posttraumatic growth. Multiple regression analyses evaluated the relative contribution of hypothesized predictors. Results Caregivers endorsed clinically significant distress, moderate posttraumatic growth, and low posttraumatic stress based on norms. Posttraumatic growth was not associated with posttraumatic stress or distress, which were significantly associated with each other. Over and above resilience at diagnosis, family psychosocial risk was associated with resilience at the end of treatment. Perceived social support, healthcare self-efficacy, and psychosocial services provided demonstrated associations with resilience in univariate analyses, but demographics and cancer-related variables did not. Conclusions Resilience and family psychosocial risk at diagnosis were the strongest predictors of caregiver resilience outcomes at the end of the treatment. Intrapersonal and interpersonal predictors were weaker and varied by resilience measure. Consistent with psychosocial standards of care, broad evaluation of caregiver risks, resources, and resilience processes and outcomes is recommended at diagnosis and through the treatment trajectory including the end of treatment.

Objective Caregivers often experience their child’s hematopoietic stem cell transplant (HCT) treatment as traumatic. Although many caregivers develop posttraumatic stress symptoms (PTSS) in response to supporting their child through HCT, other caregivers demonstrate posttraumatic growth (PTG). Religious coping may contribute to these different adjustment trajectories; however, more information is needed to clarify the unique associations of positive versus negative religious coping on caregiver PTSS and PTG in the context of pediatric HCT. This study aimed to examine the relationships between negative and positive religious coping on caregivers PTSS and PTG while controlling for caregiver sex, self-efficacy, and social support. Methods Caregivers (N = 140) of youth admitted to the hospital for their first HCT were asked to complete self-report measures of their use of positive and negative religious coping, PTSS, PTG, social support, and self-efficacy. Two hierarchical linear regressions were conducted to test hypotheses. Results Greater positive religious coping, but not negative religious coping, was associated with caregivers reporting more PTG in response to pediatric HCT. More negative religious coping, but not positive religious coping, was associated with caregivers experiencing greater PTSS. Conclusions Engaging in positive religious coping appears to promote better caregiver adjustment to pediatric HCT, whereas negative religious coping may increase caregiver risk for developing PTSS. Screening caregivers’ religious beliefs, including the type of religious coping they employ, could inform providers regarding the best approach to supporting caregivers towards a growth trajectory and mitigate PTSS.

To describe sociodemographic disparities in caregiver beliefs about the COVID-19 vaccine for their children.This was a cross-sectional study, linking caregiver-reported data to geocoded sociodemographic data from child EHRs. Caregivers of children receiving care in a Delaware pediatric healthcare system were invited to complete a survey about COVID-19 vaccine beliefs from March 19 to April 16, 2021.1499 caregivers participated (18% Black, 11% Hispanic, 32% public insurance, 12% rural). 54% of caregivers intended to vaccinate their children, while 34% were unsure and 12% would not. Caregivers of younger children (aOR 3.70, CI 2.36-5.79), Black children (aOR 2.11, CI 1.50-2.96), and from disadvantaged communities (aOR 1.59, CI 1.05-2.42) were more likely to be unsure and not vaccinate their children. Caregivers from rural communities were more likely not to vaccinate their children (aOR 2.51, CI 1.56-4.05). Fewer caregivers of younger children, Black children, and from disadvantaged communities believed in the safety or efficacy of the vaccines (p0.001), while fewer caregivers of younger children and from rural communities believed in their children's susceptibility to COVID-19 or risk of getting severe disease from COVID-19 (p0.05). While the majority (72%) of caregivers were influenced by health experts, fewer from communities of color and disadvantaged communities were (p0.001).Caregivers of younger children and from communities of color, rural communities, and disadvantaged communities in Delaware expressed more COVID-19 vaccine hesitancy.This study explores beliefs of different communities in Delaware, which are important to tailoring public health messaging and strategies to increase vaccine uptake in these communities.

Context Studies on cardiometabolic health in transgender and gender-diverse youth (TGDY) are limited to small cohorts. Objective This work aimed to determine the odds of cardiometabolic-related diagnoses in TGDY compared to matched controls in a cross-sectional analysis, using a large, multisite database (PEDSnet). Methods Electronic health record data (2009-2019) were used to determine odds of cardiometabolic-related outcomes based on diagnosis, anthropometric, and laboratory data using logistic regression among TGDY youth vs controls. The association of gender-affirming hormone therapy (GAHT) with these outcomes was examined separately among TGDY. TGDY (n = 4172) were extracted from 6 PEDSnet sites and propensity-score matched on 8 variables to controls (n = 16 648). Main outcomes measures included odds of having cardiometabolic-related diagnoses among TGDY compared to matched controls, and among TGDY prescribed GAHT compared to those not prescribed GAHT. Results In adjusted analyses, TGDY had higher odds of overweight/obesity (1.2; 95% CI, 1.1-1.3) than controls. TGDY with a testosterone prescription alone or in combination with a gonadotropin-releasing hormone agonist (GnRHa) had higher odds of dyslipidemia (1.7; 95% CI, 1.3-2.3 and 3.7; 95% CI, 2.1-6.7, respectively) and liver dysfunction (1.5; 95% CI, 1.1-1.9 and 2.5; 95% CI, 1.4-4.3) than TGDY not prescribed GAHT. TGDY with a testosterone prescription alone had higher odds of overweight/obesity (1.8; 95% CI, 1.5-2.1) and hypertension (1.6 95% CI, 1.2-2.2) than those not prescribed testosterone. Estradiol and GnRHa alone were not associated with greater odds of cardiometabolic-related diagnoses. Conclusion TGDY have increased odds of overweight/obesity compared to matched controls. Screening and tailored weight management, sensitive to the needs of TGDY, are needed.

Unaddressed psychosocial risks may contribute to disparities in cancer care outcomes and may be addressed by early psychosocial risk screening. In a study implementing universal family psychosocial risk screening in 18 children's cancer programs in the United States, parents, clinicians, and organizational leaders described the importance of universal screening to health equity.The purposes of this study were to (1) describe the perspectives of parents, clinicians, and organizational leaders regarding the importance of universal family psychosocial risk screening in childhood cancer care and (2) identify barriers and facilitators to improving health equity and decreasing health disparities in childhood cancer through universal family psychosocial screening.Nineteen participants (parent advocates, clinicians, leaders in professional organizations and healthcare policy) were interviewed. Directed content analysis was used to identify thematic descriptions.Theme 1: Personal (individual child and family) and systemic barriers to health care contribute to health disparities and can be identified by universal family psychosocial risk screening in pediatric cancer. Theme 2: Universal family psychosocial risk screening in pediatric cancer creates the opportunity for health equity through personalized psychosocial care. Theme 3: Recognition of health inequities and guidance from the Standards of Psychosocial Care for Children with Cancer and their Families suggest that clinicians and healthcare systems are ethically obligated to screen, provide resources, and advocate for services to meet identified needs.Universal family psychosocial risk screening in pediatric oncology creates the opportunity to support efforts for health equity by guiding delivery of personalized psychosocial care.NCT04446728 23 June 2020.

Objective:To characterise the parenting priorities of mothers and fathers of infants hospitalised with CHD and generate recommendations to support parenting during infant hospitalisation.Study design:Through online crowdsourcing, an innovative research methodology to create an online community to serve as a research sample, 79 parents of young children with CHD responded to questions about parenting during hospitalisation via private social networking site. Responses were analysed using qualitative research methods.Results:Three broad themes were identified: (1) establishing a bond with my baby, (2) asserting the parental role, and (3) coping with fear and uncertainty. Parents value provider support in restoring normalcy to the parenting experience during infant hospitalisation.Conclusions:Care teams can support parenting during infant hospitalisation by promoting parents’ roles as primary caretakers and decision-makers and attending to the emotional impact of infant hospitalisation on the family.

In response to the COVID-19 pandemic, healthcare workers (HCWs) are experiencing elevated levels of emotional distress, including traumatic stress, which may continue for months and years to come. To support HCWs, the Center for Pediatric Traumatic Stress created the Toolkit for Emotional Coping for Healthcare Staff (TECHS), a free, online, evidence-supported program. TECHS offers self-assessment tools for traumatic stress reactions and three coping tools that are rooted in cognitive behavioral and family therapy principles. TECHS, which comes in the form of a slide set and a pre-recorded webinar, can be implemented flexibly (e.g., small or large groups, individually, one one-hour administration or multiple shorter sections of time). Ideally, small groups of HCWs engage in TECHS together to help support team resilience. In implementing TECHS in a group, it is important to ensure participation is optional and to review expectations for confidentiality. The purpose of TECHS is to address the emotional needs of HCWs related to the pandemic and to offer a long overdue evidence-informed program that addresses the fourth aim of healthcare, improving the work life of HCWs. Sustaining emotional support programs such as TECHS is critical to maintain a functioning, effective, and healthy workforce across our healthcare institutions.

Objectives To examine sources of stress for fathers of children with congenital heart disease and opportunities for intervention to prevent or reduce paternal mental health problems. Design Qualitative study using online crowdsourcing, an innovative research methodology to create an online community to serve as a research sample. Setting Yammer, an online social networking site. Subjects Geographically diverse sample of 70 parents (25 fathers and 45 mothers) of young children with congenital heart disease. Interventions Participants joined a private group on Yammer and responded to 37 open-ended study questions over a 6-month period. Qualitative data were coded and analyzed using an iterative process, and themes regarding sources of stress for fathers of children with congenital heart disease and opportunities for intervention were identified. Measurements and main results Four broad themes regarding sources of stress for fathers of children with congenital heart disease emerged from the qualitative data from both mothers and fathers: societal expectations for fatherhood and standards of masculinity, balancing work and family responsibilities, feeling overlooked as a partner in care, and lack of father supports. To begin to address these sources of stress, participants recommended that care teams acknowledge and normalize the impact of congenital heart disease on fathers, provide support for balancing work and family responsibilities, recognize and promote father knowledge and engagement, and provide formal and informal supports for fathers of children with congential heart disease. Conclusions Fathers of children with congenital heart disease experience unique sources of stress in the absence of targeted interventions to meet their needs. Care teams play an important role in acknowledging the experiences of fathers and including and engaging fathers in care.

Youth with craniofacial conditions often have appearance and speech differences and are vulnerable to social stigmatization and body image disturbances. Given sociocultural pressures for female attractiveness, adolescent girls with craniofacial conditions may be especially vulnerable to body dissatisfaction and appearance-related social stigmatization, though such sex differences have been infrequently studied in this population. This study aimed to: (1) examine sex differences in body image disturbance, satisfaction with speech and facial appearance, and perceived stigmatization among adolescents with craniofacial conditions; and (2) evaluate whether stigmatization perceptions are predictive of body image disturbance and satisfaction with facial appearance and speech. Using a cross-sectional design, 110 adolescents from two craniofacial centers completed measures of body image disturbance, satisfaction with speech and facial appearance, and perceived stigmatization. Females reported significantly greater levels of body image disturbance and lower satisfaction with facial appearance compared to males. There were no significant sex differences for satisfaction with speech or perceived stigmatization. Perceived stigmatization was a significant predictor of body image disturbance, and satisfaction with facial appearance and speech while controlling for sex, body mass index, and age. Interventions to prevent and/or address body image and stigmatization concerns are clinically indicated for both sexes.

Objective Brain tumors during childhood may disrupt the development and maintenance of friendships due to the impact of disease- and treatment-related factors on functioning. The goal of this study was to determine if children treated for either a brain tumor or a non-central nervous system (CNS) solid tumor could name a friend and to evaluate the social information processes associated with the ability to name a friend. Method Youth (ages 7–14) treated for either a brain tumor (n = 47; mean age = 10.51 years) or a non-CNS solid tumor (n = 34; mean age = 11.29) completed an assessment within 6 months of the conclusion of treatment that included asking participants to name a friend and completing measures of social information processing (SIP). Rates of self-reported friendship were compared between groups and correlates of being able to name a friend were evaluated. Results Youth treated for a brain tumor (61.7%) were significantly less likely to name a friend compared with youth treated for a non-CNS solid tumor (85.3%). Diagnosis type (brain vs. non-CNS), relapse status, attribution style, and facial affect recognition were significant predictors of being able to name a friend or not in a logistic regression model. Conclusions Youth treated for a brain tumor and those who experienced a disease relapse are at risk for impairments in friendships; difficulties with SIP may increase this risk. Targeted screening and intervention efforts for children diagnosed with brain tumors and those who have relapsed could address difficulties with peers.

Families coping with Sickle Cell Disease (SCD) often face heightened psychosocial risk factors, and research in pediatric SCD has often focused more on this area than resiliency factors. The aim of this study was to gain a better understanding of family resiliency in SCD based on caregiver perspectives. A secondary qualitative analysis was conducted with data from a mixed-methods study of caregivers of youth with SCD (n = 22). Qualitative analyses involved coding based on two resiliency frameworks, organizing coding categories into themes, and systematically reintegrating these themes into a conceptualization that reflected family resiliency. Themes aligned well with the resiliency frameworks, and related to family belief systems and meaning-making around SCD (acceptance of SCD, positive attitude, religious faith), family organization and adaptation (flexibility, stability, social supports), and the importance of communication and problem-solving. Study findings emphasize the importance of assessing resilience in families of youth with SCD, and suggest the potential clinical benefits of developing psychosocial interventions based on family strengths.

Objective The COVID-19 Exposure and Family Impact Scales (CEFIS) were developed in Spring 2020 to assess effects of the COVID-19 pandemic on families and caregivers. Initial psychometric properties were promising. The current study examined the factor structure and evaluated convergent and criterion validity of the CEFIS in a new sample. Methods In October and November 2020, caregivers (N = 2,531) of youth (0–21 years) scheduled for an ambulatory care visit at Nemours Children’s Hospital, Delaware completed the CEFIS and measures of convergent (PROMIS Global Mental Health Scale, Family Assessment Device) and criterion validity (PTSD Checklist—Civilian). Confirmatory factor analysis was used to examine the factor structure of the CEFIS. Bivariate correlations and logistic regression were used to examine convergent and criterion validity. Results Factor analysis supported the original six- and three-factor structures for the Exposure and Impact scales, respectively. Second-order factor analyses supported the use of Exposure, Impact, and Distress total scores. Higher scores on the CEFIS Exposure, Impact, and Distress scales were associated with increased mental health concerns and poorer family functioning. Higher scores on all CEFIS scales were also associated with greater odds of having clinically significant posttraumatic stress symptoms. Conclusions The CEFIS is a psychometrically sound measure of the impact of the COVID-19 pandemic on family and caregiver functioning and may also be useful in identifying families who would benefit from psychological supports.

Background Parents of children with congenital heart disease (CHD) exhibit high rates of mental health difficulties, which can influence child developmental and behavioural outcomes. While extensive research has focused on CHD-related stressors that contribute to parental mental health difficulties, few studies have investigated parental coping strategies that may mitigate or heighten risk. This study aimed to identify parental coping strategies following diagnosis of CHD and compare use of coping strategies among different groups (mothers vs. fathers; prenatal vs. postnatal diagnosis). Methods A diverse sample of 34 parents (20 mothers and 14 fathers) of young children with CHD participated in semistructured interviews focused on their responses to CHD-related stressors. Coping strategies were identified from qualitative data and categorized according to the COPE Inventory, an instrument that assesses common adult responses to stress. Coping strategies deemed as unique to parenting a critically ill child were identified. χ2 and independent sample t tests evaluated group differences. Results Parents described using between 1 and 10 different adaptive and maladaptive strategies measured by the COPE Inventory. Most parents (82.35%) also described coping strategies that may be unique to parenting a critically ill child. Mothers were more likely than fathers to report a focus on and venting of emotions (70% vs. 21.43%) and behavioural disengagement (25% vs. 0%). Compared with parents receiving a postnatal CHD diagnosis, those receiving a prenatal diagnosis described a greater variety of coping strategies (6.23 vs. 4.52) and more often reported positive reinterpretation and growth (69.23% vs. 14.29%), behavioural disengagement (38.46% vs. 0%) and denial (38.46% vs. 0%). Conclusions Parents of children with CHD utilize a variety of coping strategies, some of which are maladaptive. Interventions tailored to the needs of mothers and fathers of young children with CHD, including those receiving a postnatal diagnosis, are needed to promote adaptive coping and optimize family psychosocial outcomes.

Background The Electronic Surviving Cancer Competently Intervention Program (eSCCIP), a psychosocial eHealth intervention for parents and caregivers of children with cancer (parents), was delivered in a community-based psychosocial oncology center. Primary endpoints were intervention acceptability, feasibility, and accessibility, with a secondary exploratory focus on psychosocial outcomes. Procedure Oncology therapists in a psychosocial oncology center were trained in eSCCIP delivery. Participants were eligible for participation if they were the primary caregiver of a child with cancer between the ages 0 and 17, could read and write in English, and had reliable internet access to complete eSCCIP. Surveys were administered electronically at baseline and post intervention to evaluate study endpoints. Effect sizes (Cohen's d) were computed for exploratory psychosocial outcomes. Nineteen parents completed the intervention. Results Parents rated eSCCIP as highly acceptable, feasible, and accessible. A large clinical effect was detected for acute distress (d = 0.79). Moderate clinical effects were reported for overall posttraumatic stress disorder (PTSD) symptoms (d = 0.37), negative mood/cognitions (d = 0.59), and symptoms of anxiety (d = 0.48). Conclusions Results indicate that eSCCIP is an acceptable, feasible, and accessible psychosocial intervention for parents. Exploratory analyses suggest that participation in eSCCIP may contribute to decreases in acute distress, symptoms of anxiety, and symptoms of PTSD.

In response to the COVID-19 pandemic, healthcare workers (HCWs) are experiencing elevated levels of emotional distress, including traumatic stress, which may continue for months and years to come. To support HCWs, the Center for Pediatric Traumatic Stress created the Toolkit for Emotional Coping for Healthcare Staff (TECHS), a free, online, evidence-supported program. TECHS offers self-assessment tools for traumatic stress reactions and three coping tools that are rooted in cognitive behavioral and family therapy principles. TECHS, which comes in the form of a slide set and a pre-recorded webinar, can be implemented flexibly (e.g., small or large groups, individually, one one-hour administration or multiple shorter sections of time). Ideally, small groups of HCWs engage in TECHS together to help support team resilience. In implementing TECHS in a group, it is important to ensure participation is optional and to review expectations for confidentiality. The purpose of TECHS is to address the emotional needs of HCWs related to the pandemic and to offer a long overdue evidence-informed program that addresses the fourth aim of healthcare, improving the work life of HCWs. Sustaining emotional support programs such as TECHS is critical to maintain a functioning, effective, and healthy workforce across our healthcare institutions.

Objective:To examine relationships amongst parental post-traumatic stress symptoms, parental post-traumatic growth, overprotective parenting, and child emotional/behavioural problems in families of children with critical CHD.Method:Sixty parents (15 fathers) of children aged 1–6 completed online questionnaires assessing parental post-traumatic stress symptoms and post-traumatic growth, overprotective parenting, and child emotional/behavioural problems. Bivariate correlations and mediational analyses were conducted to evaluate overprotective parenting as a mediator of the association between parental post-traumatic stress symptoms and child emotional/behavioural problems.Results:Parents reported significant post-traumatic stress symptoms, with over 18% meeting criteria for post–traumatic stress disorder and 70% meeting criteria in one or more clusters. Parental post-traumatic growth was positively correlated with intrusion (r = .32, p = .01) but it was not associated with other post-traumatic stress symptom clusters. Parental post-traumatic stress symptoms were positively associated with overprotective parenting (r = .37, p = .008) and total child emotional/behavioural problems (r = .29, p = .037). Overprotective parenting was positively associated with total child emotional/behavioural problems (r = .45, p = .001) and fully mediated the relationship between parental post-traumatic stress symptoms and child emotional/behavioural problems.Conclusion:Overprotective parenting mediates the relationship between parental post-traumatic stress symptoms and child emotional and behavioural problems in families of children with CHD. Both parental post-traumatic stress symptoms and overprotective parenting may be modifiable risk factors for poor child outcomes. This study highlights the need for interventions to prevent or reduce parental post-traumatic stress symptoms and to promote effective parenting following a diagnosis of CHD.

Family psychosocial risk screening is an important initial step in delivering evidence-based care in hematopoietic stem cell transplantation (HCT). Establishing an evidence-based screening approach that is acceptable, reliable, and valid is an essential step in psychosocial care delivery. This is a 3-institution multimethod study. In part 1, caregivers of children about to undergo HCT (n = 140) completed the Psychosocial Assessment Tool–Hematopoietic Cell Transplantation (PAT-HCT), a brief parent report screener adapted for HCT, and validating questionnaires. Families received feedback on their risks identified on the PAT-HCT. In part 2, 12 caregivers completed a semistructured interview about their perceptions of the PAT and the feedback process. The reliability and validity of the PAT-HCT total and subscale scores were tested using Kuder-Richardson-20 (KR-20) and Pearson correlations. Thematic content analysis was used to analyze the qualitative interview data. Internal consistency for the total score (KR-20 = .88) and the Child Problems, Sibling Problems, Family Problems, and Stress Reactions subscales were strong (KR-20 >.70). Family Structure, Social Support, and Family Beliefs subscales were adequate (KR-20 = .55 to .63). Moderate to strong correlations with the criteria measures provided validation for the total and subscale scores. Feedback was provided to 97.14% of the families who completed the PAT-HCT, and the mean rating of acceptability was >4.00 (on a 5-point scale). The qualitative data indicate that families appreciate the effort to provide screening and feedback. The PAT-HCT is a psychometrically sound screener for use in HCT. Feedback can be given to families. Both the screener and the feedback process are acceptable to caregivers.

Couples co-parenting a child with cancer face significant stressors that can adversely affect their couple relationship. How parents respond as a couple may affect the psychological adjustment of each parent and the child, as well as the ability of the family to cope with the child's illness. The purpose of this study was to assess the feasibility and acceptability of a couple-based intervention for parents of children with cancer. We conducted a randomized pilot intervention study (N = 21 couples randomized with a 2:1 allocation to the couple-based intervention or education control) testing a six-session, telephone-based intervention that trained couples in relationship skills to help them care for their child, strengthen their relationship, and support each other. We examined feasibility and acceptability of the intervention to the parents. In this study, 56% of eligible couples agreed to participate; 82% of randomized couples completed post-intervention surveys, and 62% completed all six sessions. Satisfaction with the intervention was high (mean = 3.3 on a 4-point scale). Changes in both groups were small in magnitude and mixed in direction, with some outcomes favoring the couple-based intervention and other favoring the education condition. Supporting couples is important to optimize individual and parental functioning when a child has cancer. However, there are significant challenges to delivering couple-based interventions to these parents. More research is needed to establish optimal timing and content of couple-based interventions for these parents as well as feasible methods of delivery.

Objective Evidence-based screening, assessment, and intervention practices for youth with type 1 diabetes (T1D) are underutilized. Implementation science (IS) offers theoretical models and frameworks to guide rigorous mixed methods research to advance comprehensive care for children and families. Methods We conducted a targeted review of applications of IS to T1D. Results Pediatric T1D research offers initial, but still limited studies on implementation of evidence-based psychosocial care. IS designates approaches to understanding multi-level factors that influence implementation, ways to alter these factors, and methods to evaluate strategies to improve implementation. Conclusions IS is promising for advancing the translation of pediatric psychology approaches into clinical care. Following the science of implementation, further documentation of the reach of evidence-based care and establishing practice guidelines are important initial steps. Examining the barriers and facilitators of evidence-based psychosocial care can guide the development of testable implementation strategies to improve integration of care. Successful strategies can be evaluated through multi-site controlled implementation trials to explore their effectiveness. These lines of inquiry can be considered within pediatric populations, but may also be used to examine similarities and differences in effectiveness of implementation strategies across populations and settings. Such research has the potential to improve the health and well-being of children and families.

Purpose Annual low-dose CT (LDCT) for lung screening in high-risk individuals decreases both lung cancer–specific mortality and all-cause mortality. Community oncology practice networks constituting the National Cancer Institute Community Oncology Research Program (NCORP) conduct clinical trials across the cancer spectrum. The authors report access to and characteristics of LDCT screening for lung cancer in these community oncology practices. Methods A landscape capacity assessment was conducted in 2017 across the NCORP network. The primary outcome was the proportion of adult oncology practice groups offering LDCT lung screening on site. The secondary outcomes were the proportion of those screening services (1) with radiologist participation in service management and (2) offered at ACR Designated Lung Cancer Screening Centers. Results Fifty-two percent of components and subcomponents responded to at least some portion of the assessment, representing 217 practice groups. Analyzing the 211 adult oncology practice groups responding to the primary question, 73% offered lung screening services on site. Radiologists participated in managing 69% of these services. Forty-seven percent were offered in ACR Designated Lung Cancer Screening Centers. Minority and underserved practice groups were less likely to offer lung screening; however, this association dissipated when analyses focused on practices within the United States. Safety net and Critical Access Hospital designation increased the likelihood of screening availability. Conclusions The majority of community oncology practice groups within the NCORP offered lung screening on site, although radiologist participation in service management and ACR Lung Cancer Screening Center designation, markers of service quality, were more variable.

Children and their family members may experience potentially traumatic events during medical treatment that can result in pediatric medical traumatic stress reactions. Play is a normative part of childhood that may facilitate engagement in medical care and may be incorporated in trauma-informed care. This qualitative study used semistructured interviews to examine the role of play and its potential use in trauma-informed care. The perspectives of 30 multidisciplinary pediatric healthcare providers representing 5 divisions (Cardiology, Endocrinology, Oncology, Orthopedics, Pulmonology) in 2 children's hospitals were gathered. Constant comparison and directed content analysis were used to analyze the data. Themes and subthemes were derived in 3 areas: (a) aspects of pediatric medical care that are potentially traumatic (specific events; and physical, emotional, and family-level consequences), (b) uses of play in pediatric healthcare settings (general [relieve boredom] and trauma-specific [prevention/alleviation]), and (c) potential barriers to the use of play in trauma-informed care (infection control; lack of provider training). The results document aspects of pediatric medical experiences that providers recognize as potentially traumatic, highlighting the importance of trauma-informed care. They also identify ways to use play to engage with children and families in a trauma-informed way. Additional training and development regarding play may increase the viability of using play in trauma-informed pediatric healthcare. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

INTRODUCTION: Evidence-based knowledge is needed to reduce psychological symptoms in families of young children with cancer after treatment ends.OBJECTIVE: To evaluate the effect of a psychotherapeutic intervention, FAMily-Oriented Support (FAMOS) on parents of young children after cancer treatment.METHODS: All families of children aged 0-6 years who had been treated for cancer at one of the four paediatric oncology departments in Denmark were invited to participate after ending intensive medical treatment. The families were randomly assigned 1:1 to up to seven sessions of FAMOS, a cognitive-behavioural manualised home intervention, for 6 months or to usual psychosocial care. The primary outcome was parents' symptoms of posttraumatic stress disorder (PTSD) at 6 and 12 months after enrolment. The secondary outcomes were parents' symptoms of depression and anxiety.RESULTS: We enrolled 109 families (204 parents). Parents in the intervention group did not show a statistically significant decrease in symptoms of PTSD as compared with the control group at 6 months (predicted mean difference, -0.10; 95% confidence interval [CI] -0.19, 0.01), but a statistically significant decrease was seen at 12 months (predicted mean difference, -0.15; 95% CI -0.28, -0.02), and they had significantly lower symptoms of depression at both 6 and 12 months. Differences in reductions in symptoms of anxiety were not statistically significant.CONCLUSIONS: The FAMOS intervention reduced parents' symptoms of PTSD and depression. Next step is to also report on psychological effects in the children and siblings (clinicaltrials.gov: NCT02200731).

This chapter provides an overview of current and recommended practices regarding systematic screening and assessment of psychosocial needs in pediatric oncology. The chapter reviews published recommendations from the Psychosocial Standards of Care Project for Childhood Cancer and provides information about validated instruments for brief screening of children and their families. It also describes guidelines for using follow-up symptom-based measures and in-person clinical assessment. It includes a summary of what is known about the current implementation of screening nationally, and possible steps to enhance implementation. There is also special consideration of screening and assessment of unique medical populations within pediatric oncology, children with developmental concerns, and families from different cultures. Future directions include using implementation science to develop models for routine screening and demonstrating the impact of screening on psychosocial outcomes for patients and families and on the system of pediatric oncology care.

Young adult survivors of childhood cancer have unique challenges and perspectives related to their childhood cancer experience. Like younger survivors, they are at risk for late effects, which often increase with age. However, they have greater risk of adjustment difficulties than younger survivors, do not engage in optimal levels of health behaviors to mitigate risk for future cancer and late effects, and often do not engage in appropriate adult-oriented follow-up care. Further, young adult survivors may deal with cognitive, educational, social, and vocational challenges, as well as difficulty in autonomous functioning. A variety of demographic and disease- and treatment-related variables confer risk for negative outcomes, with brain tumor survivors or those with treatment exposures to the central nervous system most often at risk. On the other hand, young adult survivors and their parents experience positive psychological benefits of the cancer experience. Emerging topics for further research include the impact of new therapies (e.g., immunotherapy, proton therapy) and genetic predisposition.

Background: Cancer-related financial hardship is associated with poor care outcomes and reduced quality of life for patients and families. Scalable intervention development to address financial hardship requires knowledge of current screening practices and services within community cancer care. Methods: The NCI Community Oncology Research Program (NCORP) 2017 Landscape Assessment survey assessed financial screening and financial navigation practices within U.S. community oncology practices. Logistic models evaluated associations between financial hardship screening and availability of a cancer-specific financial navigator and practice group characteristics (e.g., safety-net designation, critical access hospital, proportion of racial and ethnic minority patients served). Results: Of 221 participating NCORP practice groups, 72% reported a financial screening process and 50% had a cancer-specific financial navigator. Practice groups with more than 10% of new patients with cancer enrolled in Medicaid (adjOR = 2.81, P = 0.02) and with less than 30% racial/ethnic minority cancer patient composition (adjOR = 3.91, P < 0.01) were more likely to screen for financial concerns. Practice groups with less than 30% racial/ethnic minority cancer patient composition (adjOR = 2.37, P < 0.01) were more likely to have a dedicated financial navigator or counselor for patients with cancer. Conclusions: Most NCORP practice groups screen for financial concerns and half have a cancer-specific financial navigator. Practices serving more racial or ethnic minority patients are less likely to screen and have a designated financial navigator. Impact: The effectiveness of financial screening and navigation for mitigating financial hardship could be tested within NCORP, along with specific interventions to address cancer care inequities. See related commentary by Yabroff et al., p. 593

Background The impact of pediatric hematopoietic stem cell transplant (HCT) on family functioning varies, but little is known about how the timing of HCT in children's treatment course contributes to this variability. This study examines how preexisting child, sibling, and family problems, the length of time between diagnosis to HCT, and children's age at HCT are associated with family and caregiver functioning. Procedure Caregivers (n = 140) of children (≤18 years old) scheduled to undergo their first HCT completed the Psychological Assessment Tool-HCT and the Impact on Family Scale. Treatment information was extracted from electronic medical records. A bootstrapped multivariate path analysis was used to test the hypotheses. Results More preexisting family problems related to greater caregiver perceived negative impact of their child's HCT across family and caregiver functioning domains. Less time between diagnosis and HCT was associated with greater caregiver personal strain, particularly for those with younger children undergoing HCT. Younger child age at HCT was also associated with a larger negative impact on family social functioning. Conclusions Families with preexisting problems are the most at-risk for experiencing negative impacts related to their child's HCT. The timing of a child's HCT within their treatment course and the child's age during HCT may impact families' social functioning and caregiver adjustment. Screening families for preexisting family problems, particularly for families with young children or who are abruptly learning of their child's need for an HCT, may assist providers in identifying families who would benefit from earlier or more intensive psychosocial support.

Background American Society of Clinical Oncology guidelines recommend that patients ≥65 years of age starting chemotherapy undergo a geriatric assessment (GA) to inform and guide management; however, little is known about resources available in community oncology practices to implement these guidelines and to facilitate geriatric oncology research. Materials and Methods Oncology practices within the National Cancer Institute Community Oncology Research Program (NCORP) were electronically surveyed in 2017 regarding the availability of specialty providers, supportive services, and practice characteristics, as part of a larger survey of cancer care delivery research capacity. Results Of the 943 NCORP practices, 504 (54%) responded to the survey, representing 210 practice groups. The median new cancer cases per year ≥65 years of age was 457 (interquartile range 227–939). Of respondents, only 2.0% of practices had a fellowship-trained geriatric oncologist on staff. Geriatricians were available for consultation or comanagement at 37% of sites, and of those, only 13% had availability within the oncology clinic (5% of overall). Practice size of ≥1,000 new adult cancer cases (ages ≥18) per year was associated with higher odds (1.81, confidence interval 1.02–3.23) of geriatrician availability. Other multidisciplinary care professionals that could support GA were variably available onsite: social worker (84%), nurse navigator (81%), pharmacist (77%), dietician (71%), rehabilitative medicine (57%), psychologist (42%), and psychiatrist (37%). Conclusion Only a third of community oncology practices have access to a geriatrician within their group and only 5% of community sites have access within the oncology clinic. Use of primarily self-administered GA tools that direct referrals to available services may be an effective implementation strategy for guideline-based care. Implications for Practice Only a minority of community oncology practices in the U.S. have access to geriatric specialty care. Developing models of care that use patient-reported measures and/or other geriatric screening tools to assess and guide interventions in older adults, rather than geriatric consultations, are likely the most practical methods to improve the care of this vulnerable population.

Fifteen evidence-based Standards of psychosocial care for children with cancer and their families have been established. Despite the importance of implementing the standards, significant barriers and challenges exist. In order to overcome barriers to implementation and assess the level of current psychosocial care, a model of evaluating psychosocial care (Matrix) and a set of pathways toward achieving optimal care (Guidelines) were developed. This special report describes the process involved in the creation of standard templates and development of content based on rigorous reviews from multidisciplinary psychosocial experts, focus groups, and multiple revisions based on further expert review. The resulting Matrix and Guidelines are included as Supplemental Information.

The objective of this systematic review was to assess the relationship between pain (frequency/intensity/duration, impairment, coping) and emotional functioning in pediatric Sickle Cell Disease, and evaluate the state of the literature. Studies were included if they met each of the following criteria: (a) primarily pediatric sample of youth or young adults up to age 21 years with SCD, (b) examined emotional functioning including anxiety and/or depressive and/or internalizing symptoms, and/or affect, (c) examined pain intensity/frequency/duration and/or pain-related impairment and/or pain coping as it relates to emotional functioning, as defined above. Using the established guidelines for systematic reviews, we searched PsycINFO, PubMED, and CINAHL databases for studies published through June 2018. Screening resulted in 33 studies meeting inclusion criteria. Study data were extracted and evaluated for scientific merit, resulting in four studies being removed. 29 studies were included in the final synthesis. Studies provide strongest evidence of a relationship between increased pain frequency and higher depressive and anxiety symptoms. There are moderate-to-strong associations between pain-related impairment and depressive symptoms, and small-to-strong associations between pain-related impairment and anxiety. When examining pain-coping strategies, maladaptive cognitive strategies show the strongest association with emotional functioning. There is a need for more adequately powered, prospective studies based on theoretical frameworks in order to advance our understanding of the relationship between pain and emotional functioning in pediatric SCD.

Objective To describe a novel, five-phase approach to collecting qualitative data from hard-to-reach populations using crowdsourcing methods. Methods Drawing from experiences across recent studies with type 1 diabetes and congenital heart disease stakeholders, we describe five phases of crowdsourcing methodology, an innovative approach to conducting qualitative research within an online environment, and discuss relevant practical and ethical issues. Results Phases of crowdsourcing methodology are: (I) Preparing; (II) Forming Crowds; (III) Collecting Crowdsourced Data; (IV) Coding and Analyzing Crowdsourced Data; and (V) Generating and Disseminating Findings. Iterative feedback from stakeholders is obtained in all five phases. Practical and ethical issues include accessing diverse stakeholders, emotional engagement of crowd participants, responsiveness and transparency of crowdsourcing methodology, and limited personal contact with crowd participants. Conclusions Crowdsourcing is an innovative, efficient, feasible, and timely approach to engaging hard-to-reach populations in qualitative research.