Development of a blueprint for sibling psychosocial services: A nationwide study.

BACKGROUND: Siblings of youth with cancer have heightened risk for poor long-term psychosocial outcomes. Although sibling psychosocial care is a standard in pediatric oncology, this standard is among those least likely to be met. To address barriers to providing sibling services, a blueprint for systematic psychosocial screening and support of siblings was developed based on feedback from a national sample of psychosocial providers. PROCEDURE: Semi-structured interviews were conducted with a purposive sample of psychosocial care providers (N = 27) of various disciplines working in US pediatric cancer centers, varied in size, type, and extent of sibling support. Interviews queried providers' suggestions for the future of sibling psychosocial care and impressions of a blueprint for sibling service delivery, which was iteratively refined based on respondents' feedback. Interviews were analyzed using applied thematic analysis. RESULTS: Based on existing literature and refined according to providers' recommendations, the Sibling Services Blueprint was developed to provide a comprehensive guide for systematizing sibling psychosocial care. The blueprint content includes: (i) a timeline for repeated sibling screening and assessment; (ii) a stepped model of psychosocial support; (iii) strategies for circumventing barriers to sibling care; and (iv) recommendations for how centers with varying resources might accomplish sibling-focused care. The blueprint is available online, allowing providers to easily access and individualize the content. Providers indicated enthusiasm and high potential utility and usability of the blueprint. CONCLUSIONS: The Sibling Services Blueprint may be a useful tool for systematizing sibling psychosocial care, promoting wider availability of sibling-focused services, and addressing siblings' unmet needs.

The Psychosocial Impact of the COVID-19 Pandemic on Families of Youth of Color: A Prospective Cohort Study.

OBJECTIVE: Prospectively examine racial and ethnic disparities in exposure to COVID-19-related stressors and their impact on families. METHODS: A racially, ethnically, and socioeconomically diverse cohort of caregivers of youth (n = 1,581) representative of the population served by a pediatric healthcare system completed the COVID-19 Exposure and Family Impact Scales in Oct/Nov 2020 and March/April 2021. Linear mixed-effects models were used to examine exposure to COVID-19-related events (Exposure), impact of the pandemic on family functioning and well-being (Impact), and child and parent distress (Distress) across time and as a function of race and ethnicity, adjusting for other sociodemographic variables. RESULTS: Exposure and Distress increased over time for all participants. After adjusting for sociodemographic factors, caregivers of Black and Hispanic youth reported greater Exposure than caregivers of White youth and caregivers of Black youth had a greater increase in Exposure over time than caregivers of White youth. Caregivers of White youth reported greater Impact than caregivers of Black and Other race youth. CONCLUSIONS: Exposure to and impact of the COVID-19 pandemic on family psychosocial functioning varied by race and ethnicity. Although exposure to COVID-19-related events was greater among Hispanic and non-Hispanic Black families, those of marginalized races reported less family impact than non-Hispanic White families, suggesting resiliency to the pandemic. Research should examine such responses to public health crises in communities of color, with a focus on understanding protective factors. These findings suggest the importance of culturally tailored interventions and policies that support universal psychosocial screenings during times of public health crises.

Online Experiences, Internet-Fostered Connection, Resilience, and Adjustment Among Adolescent Siblings of Children With Cancer.

BACKGROUND: Pediatric cancer disrupts the lives of siblings in many ways, including physical separations from family and friends that increase risk for distress. Research suggests that siblings use technology and social media to connect with friends and family and seek social support and interaction. However, this may expose siblings to negative online experiences that can erode self-esteem, reducing resilience. OBJECTIVE: This study explored the relationship between online experiences, internet-fostered connection, resilience, and psychosocial health among siblings of children with cancer. METHODS: Participants included adolescent siblings (N = 81; aged 12-17 years) of children with cancer. Most were female (56.8%), and 50.6% represented racially or ethnically minoritized groups. Online experiences, social media use, resilience, and psychosocial health were self-reported and analyzed using structural equation modeling. RESULTS: A majority of siblings reported moderate to severe posttraumatic stress symptoms (PTSSs) (59%) and elevated emotional and behavioral difficulties (EBDs) (53%). Experiencing more positive online experiences was associated with greater perceived connection to family and friends online, but not resilience, PTSSs, or EBDs. In contrast, higher negative online experience scores were significantly associated with more PTSSs and EBDs. In addition, the association between negative online experiences and EBDs was significantly mediated by a negative association between negative online experiences and resilience. CONCLUSIONS: Although social media may be a valuable tool for helping siblings of children with cancer garner social support, negative online experiences may be detrimental to their adjustment. IMPLICATIONS FOR PRACTICE: Efforts should be made to preserve and foster resilience among siblings who use social media for support.

Launching IDeA state early career clinician-scientists with mentored just-in-time grant-writing support.

Institutional Development Award (IDeA) programs build research infrastructure in regions with historically low access to NIH funds. The Mentored Research Development Award (MRDA), a professional development program embedded in our IDeA-funded center, provides junior investigators with mentorship and effort offset to write a grant. We evaluated outcomes from the first eight years (2013-2021; N = 55) using administrative records, publicly available data, and a self-report survey (n = 46, 84% response rate). Fifteen MRDA recipients (27%) went on to receive NIH funding. Providing just-in-time grant-writing support may launch early career clinician-scientists in an IDeA state context.

Telehealth and Type 1 Diabetes Care During COVID-19: Perceptions From Youth of Color, Caregivers, and Health Care Providers.

Objective: At the outset of the coronavirus disease 2019 (COVID-19) pandemic, health care systems rapidly implemented telehealth services to maintain continuity of type 1 diabetes care. Youth of color are more likely to have suboptimal glycemic control and may benefit most from efforts to ensure continuity of care. However, research examining the perspectives of families of youth of color regarding telehealth for pediatric type 1 diabetes care is limited. We gathered perspectives from youth of color, their caregivers, and health care providers (HCPs) on telehealth for type 1 diabetes care during COVID-19. Methods: Fifty participants (22 caregivers, 19 youth, and nine HCPs) completed semi-structured interviews conducted in English (n = 44) or Spanish (n = 6). Transcripts containing mentions of telehealth (n = 33) were included for qualitative analysis to extract themes pertaining to perceptions of type 1 diabetes care and telehealth use during COVID-19. Results: Themes related to perceptions, feasibility, and quality of telehealth diabetes care were obtained. Most families had positive perceptions of telehealth. Families and HCPs described logistical and technical challenges and noted the potential for disparities in telehealth access and use. Furthermore, caregivers and HCPs felt that the lack of in-person interaction and limited access to clinical data affected the quality of care. Conclusion: Families of youth of color with type 1 diabetes mostly had positive perceptions of telehealth but also identified issues with feasibility and quality of care. Our findings highlight a need for interventions promoting equal access to telehealth and quality care for all youth with type 1 diabetes to minimize disruptions in care.

Trajectories of Traumatic Stress Symptoms Among Siblings of Children With Cancer: The First Two Years Post-Diagnosis.

OBJECTIVE: Identify and describe trajectories of cancer-related posttraumatic stress symptoms (PTSS) among siblings of children with cancer within two years of diagnosis. METHOD: Siblings (aged 8-18; M = 11.2 years) across the United States, and for each, one caregiver, were recruited for a cohort sequential longitudinal study with three data collection points six months apart beginning at 6- or 12-months after cancer diagnosis. Siblings (N = 229; 42% of eligible/approached; 53% identifying as female; 68% identifying as non-Hispanic White) completed the Child Posttraumatic Stress Disorder Symptom Scale. Caregivers completed the Strengths and Difficulties Questionnaire (SDQ). Latent class growth analysis (LCGA) and growth mixture modeling (GMM) identified PTSS patterns across time. RESULTS: Fit statistics supported models with three to five PTSS trajectories. The three-class LCGA model included a large mild PTSS group (61%), a moderate PTSS group (35%), and a small (4%) stable severe PTSS group. The four-class LCGA and three- and four-class GMM included groups improving from moderate to mild PTSS (7-21%) and worsening to moderate PTSS across time (12-17%). Across models, siblings with mild PTSS had fewer caregiver-reported emotional and behavioral difficulties on the SDQ. CONCLUSIONS: A large group of siblings of children with cancer demonstrate resiliency, however, substantial subsets experience patterns of PTSS that include levels in the moderate-to-severe range during the first two years post-diagnosis. Future research should examine these patterns in more diverse/representative samples and identify factors associated with increasing and sustained severe PTSS to inform intervention targets and reduce cancer-related burden on families.

Validation of the Psychosocial Assessment Tool Sibling Module Follow-Up Version.

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 <.001) and predictive (r values >0.6, p values <.001) validity were strong at each time point. An optimal clinical cutoff of 0.32 was identified (range: 0.00-1.00). 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.

Persistent Disparities in Pediatric Health Care Engagement During the COVID-19 Pandemic.

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.

Technology-Mediated Support Among Siblings of Children with Cancer.

Purpose: A diagnosis of pediatric cancer can leave healthy siblings with limited access to support. Technology-mediated interpersonal interactions have been noted among adolescent and young adults with cancer and may be an effective source of support for adolescent siblings of children with cancer. In this study, we understand how adolescent siblings use technology to connect with their support network and how their technology use changes after their sibling's cancer diagnosis. Methods: Participants included a national sample (N = 24) of adolescents aged 12-17 who had a sibling diagnosed with cancer in the last 2 years (up to 3 years if still receiving curative-focused treatment). Ecomaps were cocreated with participants to identify sources of social support and modality of interactions. Interviews were transcribed, coded, content analyzed, and descriptively summarized. Results: Adolescent siblings (mean = 14.2 years) perceived technology as a tool to maintain support from their established personal network, rather than a way to expand sources of social support. Most did not seek support or information about cancer outside their known network, preferring information to come from parents or trusted network members. Siblings identified video calls as an important resource for connecting with parents, their sick brother or sister, and others to receive emotional support and companionship. Conclusions: Findings suggest that adolescent siblings of children use technology to connect with their established network for support, an important finding for designing assessments and interventions for this population. Future inquiry should explore these differences, identify unmet needs, and inform acceptable, effective interventions to augment support.

Bringing Together a Transdisciplinary Team to Create and Advance a Shared Vision for Research and Support for Siblings of Youth With Cancer.

Background: Siblings of youth with cancer are at risk for psychosocial difficulties and report unmet needs. Supporting siblings is a psychosocial standard of care; however, many barriers prevent this standard from being fully achieved. Transdisciplinary team science has potential to generate novel, real-world solutions to complex research problems and can be beneficial to addressing sibling needs within pediatric hematology/oncology nursing. This process paper aims to present a guiding framework for transdisciplinary team science using the experiences of the Sibling Partnership for Advocacy, Research, and Care in Childhood Cancer (SPARCCC) as an exemplar. Methods: SPARCCC employed an established model of transdisciplinary team-based research, which consisted of four phases: development, consultation, implementation, and translation. This transdisciplinary team was comprised of international experts from a variety of disciplines, as well as siblings and families impacted by cancer. Results: SPARCCC held two summits, and team members developed ongoing collaborative efforts to advance advocacy, research, and support for siblings of youth with cancer. The team implemented the four phases of the transdisciplinary team-based framework and used an iterative process to build a shared perspective of the needs of siblings and take action. For instance, we completed a grant application, several manuscripts, and conference presentations to disseminate our findings and begin to advance a focused research agenda for sibling supportive care. Discussion: Transdisciplinary team science holds promise for tackling complex issues within pediatric hematology/oncology nursing research, particularly areas that are not well aligned with more traditional models and can be used to generate novel solutions.

Inconsistent, uncoordinated, and reactive: The current state of sibling psychosocial care.

BACKGROUND: Although providing sibling psychosocial services is a standard of care in pediatric oncology, initial survey research suggests that this standard is rarely achieved and siblings' support needs remain unmet. Which sibling psychosocial services are available and how centers provide such services is unknown. To identify targetable services gaps, this qualitative study characterizes current sibling psychosocial care practices at select pediatric cancer centers across the United States. PROCEDURE: Semi-structured interviews were conducted with a purposive sample of psychosocial care providers (N = 27) working across the United States in pediatric oncology centers of varied sizes. Interviews queried providers regarding sibling-focused parent psychoeducation, psychosocial screening, comprehensive assessment, and psychosocial support offerings. Interview data were analyzed using Applied Thematic Analysis. RESULTS: Across cancer centers, sibling care practices did not align with consensus-based recommendations. The nature and availability of sibling-focused psychoeducation, screening, assessment, and support were variable between and within centers. Siblings themselves were largely absent from sibling psychosocial care, and care was rarely sibling-specific. The flow of information about siblings was discontinuous and uncoordinated across the care continuum, resulting in psychosocial care provided reactively, typically in response to parental concerns. CONCLUSIONS: Sibling psychosocial care provision falls short of established care recommendations, leaving sibling psychosocial needs unmet. Findings highlight the need for tools and strategies to facilitate the implementation of sibling psychosocial care across the care continuum, to support siblings' psychosocial functioning across the life course.

Adaptation and pilot implementation of the Psychosocial Assessment Tool for Autism Spectrum Disorders (PAT-ASD).

Recognizing the multifaceted and chronic demands on families of children with Autism Spectrum Disorder (ASD) and challenges in providing care matched to need, we adapted the Psychosocial Assessment Tool (PAT), a brief caregiver-report screener of family psychosocial risk, for this population. Study methods included literature review, focus groups with providers, and feedback from caregivers. The PAT-ASD is consistent with the original PAT, with new items reflecting core behavioral manifestations of ASD and parent and family challenges associated with chronicity. The PAT-ASD was implemented in a four-month pilot and was completed online by 59% of families. Although further testing of its validity is necessary, the PAT-ASD is a promising means of assessing family psychosocial risk for families of children with ASD.

Family-centered communication in pediatric sickle cell disease.

BACKGROUND: Individuals with sickle cell disease (SCD) experience systemic barriers in accessing high-quality care. Research suggests that patient/family-provider relationships are an important indicator of healthcare quality and can influence disease self-management and outcomes. The Patient Centered Communication (PCC) framework holds that patient/family-centered communication (e.g., eliciting, understanding, and validating patients' perspectives within their unique psychosocial contexts) contributes to improved family-provider relationships, as well as self-efficacy for disease management, adherence, and health outcomes. While the PCC framework has been useful in guiding the evaluation of patient/family-provider communication in other pediatric populations, it has not yet been applied in the context of pediatric SCD. This study aimed to use this framework to examine patient and family perceptions of communication with pediatric SCD healthcare providers. PROCEDURE: Total 17 caregivers (82% mothers, 94% Black/African American) and eight patients (62% female, aged 13-19 years, M = 16.50) completed semi-structured interviews. The PCC framework informed the development of a preliminary codebook. Thematic content analysis summarized family perspectives regarding communication with providers. RESULTS: For youth with SCD and their caregivers, specific themes related to family-centered communication included: reducing patient/family distress, supporting disease self-management efforts, facilitating information exchange and decision-making, and fostering positive and trusting relationships with providers. CONCLUSIONS: This study helps to address gaps in the literature related to patient/family-provider communication within pediatric SCD. Results underscore the importance of patient- and family-centered communication across pediatric SCD care. These findings can inform future research and clinical care initiatives to improve patient/family-provider interactions and health outcomes for this underserved population.

Initial validation of a new psychosocial screener for siblings of youth with cancer: The Psychosocial Assessment Tool Sibling Modules.

OBJECTIVE: 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+. METHODS: 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. RESULTS: 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-values <0.01) and follow-up (r-values >0.4, p-values <0.05). Predictive validity was supported by significant correlations between baseline PAT Sibling Module scores and 6 month SDQ scores (r = 0.86, p < 0.001). CONCLUSIONS: 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.

COVID-19 Exposure and Family Impact Scales for Adolescents and Young Adults.

OBJECTIVE: To understand the impact of the coronavirus disease 2019 (COVID-19) pandemic on adolescents and young adults (AYAs), we adapted the COVID-19 Exposure and Family Impact Scales (CEFIS; Kazak et al., 2021) for AYAs. Here, we report on the development, structure, and psychometric properties of the CEFIS-AYA. METHODS: The CEFIS-AYA was developed by a multidisciplinary, multi-institutional team using a rapid iterative process. Data from 3,912 AYAs from 21 programs at 16 institutions across the United States were collected from May 2020 to April 2021. We examined the underlying structure of the CEFIS-AYA using principal component analysis (PCA), calculated internal consistencies, and explored differences in scores by gender and age. RESULTS: Participants reported exposure to a range of COVID-19-related events (M = 9.08 events, of 28). On the bidirectional 4-point Impact scale, mean item scores were mostly above the midpoint, indicating a slightly negative impact. Kuder-Richardson 20/Cronbach's Alpha was good for Exposure (α = .76) and excellent for Impact (α = .93). PCA identified seven factors for Exposure (Severe COVID-19, Loss of Income, Limited Access to Essentials, COVID-19 Exposure, Disruptions to Activities, Disruptions to Living Conditions, and Designation as an Essential Worker) and five for Impact (Self and Family Relationships, Physical Well-Being, Emotional Well-Being, Social Well-Being, and Distress). Gender and age differences in CEFIS-AYA scores were identified. DISCUSSION: Initial reliability data are strong and support use of the CEFIS-AYA for measuring the effect of the COVID-19 pandemic on AYAs in research and clinical care.

The Social Networks and Social Support of Siblings of Children with Cancer.

Siblings of children with cancer need support to ameliorate the challenges they encounter; however, little is known about what types and sources of support exist for siblings. This study addresses this gap in our understanding of the social networks and sources of support for adolescents with a brother or sister who has cancer. Additionally, we describe how the support siblings receive addresses what they feel are the hardest aspects of being a sibling of a child with cancer. During semi-structured interviews, siblings (ages 12-17) constructed ecomaps describing their support networks. Data were coded for support type (emotional, instrumental, informational, validation, companionship) and support provider (e.g., mother, teacher, friend). Network characteristics and patterns of support were explored. Support network size ranged from 3 to 10 individuals (M = 6 ± 1.9); siblings most frequently reported mothers as sources of support (n = 22, 91.7%), followed by fathers (n = 19, 79.2%), close friends (n = 19, 79.2%) and siblings (with or without cancer) (n = 17, 70.8%). Friends and brothers or sisters most often provided validation and companionship while instrumental and informational supports came from parents. This study provides foundational knowledge about siblings' support networks, which can be utilized to design interventions that improve support for siblings of children with cancer.

Parental post-traumatic stress, overprotective parenting, and emotional and behavioural problems for children with critical congenital heart disease.

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.

Health-related and cancer risk concerns among siblings of childhood cancer survivors: a report from the Childhood Cancer Survivor Study (CCSS).

OBJECTIVE: To characterize the prevalence and predictors of concerns regarding future health and cancer risk among siblings of childhood cancer survivors. METHODS: This study reports longitudinal data (baseline and follow-up) from 3969 adult siblings (median age = 29 [range 18-56] years) of long-term survivors of childhood cancer (median time since diagnosis 19.6 [9.6-33.8] years). Self-reported future health and cancer risk concerns (concerned vs not concerned) were assessed. Demographics and health data reported by both the siblings and their matched cancer survivors were examined as risk factors for health concerns using multivariable logistic regression. RESULTS: Percentage of siblings reporting future health and cancer risk concerns, respectively, decreased across decade of survivors' diagnosis: 1970s (73.3%; 63.9%), 1980s (67.2%; 62.6%), and 1990s (45.7%; 52.3%). Risk factors associated with future health concerns included sibling chronic health conditions (grade 2 Odds Ratio [OR]=1.57, 95% CI: 1.12-2.20; grades 3-4 OR=1.86, 95% CI: 1.18-2.94; compared to less than grade 2). Risk factors associated with future cancer concerns included sibling chronic health conditions (grade 2 OR=1.43, 95% CI: 1.05-1.94; grades 3-4 OR=1.64, 95% CI: 1.09-2.47; compared to less than grade 2). CONCLUSIONS: Sibling concerns regarding future health and cancer have diminished in recent decades. There are subgroups of siblings that are at-risk for future health and cancer risk concerns. IMPLICATIONS FOR CANCER SURVIVORS: Routine screening of concerns in at-risk siblings of survivors of childhood cancer may benefit the siblings of cancer survivors. These individuals may benefit from early interventions during diagnosis and treatment of their siblings.

Psychosocial care providers' perspectives: Barriers to implementing services for siblings of children with cancer.

BACKGROUND: Siblings of children with cancer are at increased risk for poor long-term psychosocial outcomes. The standard of psychosocial care in pediatric oncology calling for sibling support is not routinely implemented, often leaving siblings with unmet psychosocial needs. Barriers to implementing the sibling standard may exist at multiple levels. This study addresses research gaps regarding multilevel barriers to supporting siblings at the health care system, oncology center, and family levels. PROCEDURE: Qualitative interviews were conducted with psychosocial care providers (N = 27; 18 psychologists, five social workers, three psychiatrists, and one child life specialist) employed at oncology centers within hospitals across the United States, varying in extent of sibling programming and center size. Interviews included questions about providers' roles, oncology center characteristics, existing psychosocial sibling services, barriers to providing systematic sibling assessment, and ideas about how to overcome barriers. Data were analyzed using applied thematic analysis. RESULTS: Qualitative analysis revealed (a) barriers to providing sibling services occur at multiple levels (health care system, oncology center, family); (b) barriers at multiple levels frequently interact with one another; and (c) interacting barriers maintain a cycle: barriers to providing services contribute to limited provision of services, low service provision leads to limited utilization of existing services and underprioritization of siblings, and together this leads to siblings being off the radar, which further limits sibling service provision. CONCLUSION: Addressing health care system and oncology center barriers to implementing sibling assessment and support may be important potential targets for interventions to help ensure that siblings receive needed psychosocial assessment and support.

Validation of the COVID-19 Exposure and Family Impact Scales.

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.