Parent and adolescent perspectives on a novel transdisciplinary model of healthcare delivery for type 1 diabetes.

Objective: We aimed to obtain pre-adolescent/adolescent and parent input on a proposed transdisciplinary model for routine type 1 diabetes (T1D) healthcare in which an advanced practice nurse, dietitian, and psychologist with expertise in T1D and extensive cross-discipline training co-deliver care during quarterly T1D care visits using a family-focused approach.

Methods: Participants were 17 parent-youth dyads plus one additional adolescent who responded to open-ended questions about the structure and format of the proposed transdisciplinary care model via an online, private social network. A six-member coding team developed and revised a codebook, coded question responses through iterative cycles of inductive coding, and distilled major recurring themes to obtain perspectives on the transdisciplinary care model and feedback on improving the model.

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.

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.

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.

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; = 55) using administrative records, publicly available data, and a self-report survey ( = 46, 84% response rate).

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.

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.

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.

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).

Technology-Mediated Support Among Siblings of Children with Cancer.

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

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.

Online patient portal use by caregivers in pediatric oncology: Are we widening sociodemographic disparities?

Background: Financial and regulatory incentives have encouraged and increased the availability of online patient portals that provide caregivers access to their child's electronic health records (EHR). Such access is believed to promote better engagement and outcomes of care. Little is known about the use of portals by caregivers 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.

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.

Survey Research With Families in the Context of Pediatric Chronic Health Conditions: Key Considerations and Future Directions.

Self-report family functioning measures play a critical role in advancing our understanding of how families are impacted by, and adapt to, the demands of childhood health conditions. In this article, we present key considerations when conceptualizing, assessing, and analyzing dynamic family processes in research; discuss related implications for selecting instruments; and provide an update on the evidence base of self-report family functioning measures. Researchers need to consider theory, definitions of the family, informants, instruments, and procedural and data analytic issues when designing family research.