Caregiver Well-Being and Pediatric Healthcare Utilization in Youth With Sickle Cell Disease: The Role of Caregiver and Child Factors.

Introduction: The current study examined the way in which caregiver and child factors relate to caregiver psychological variables and patterns of healthcare utilization for youth with sickle cell disease (SCD).

Methods: Participants included 50 parent/patient dyads (n = 100 total participants) who were recruited from an outpatient pediatric SCD Clinic. Caregivers completed questionnaires to assess caregiver adverse childhood experiences (ACEs), recent emotional distress, and resilience, as well as caregiver/child sociodemographic and clinical factors.

A mixed methods study to understand the role of knowledge in transition among youth with sickle cell disease.

Disease and management knowledge is crucial for individuals with sickle cell disease (SCD) transitioning from a pediatric to adult health care facility. However, there is a lack of understanding regarding the specific education needed and its association with an individual's ability to successfully transition. This study aims to explore the association between SCD-specific transition readiness assessment scores, patient characteristics, and the perceived importance and confidence in the individual's ability to manage their health and transition to an adult doctor.

Neurocognitive passport: A novel feedback tool for pediatric patients with sickle cell disease.

Sickle Cell Disease (SCD) is associated with neurocognitive impairment, and routine cognitive and academic screening is recommended. Traditional reports following testing are often not health literate, limiting the usefulness of evaluations. This study investigated whether a small "passport" summarizing results and recommendations would be helpful in increasing understanding of results and follow-through on recommendations.

Health-related quality of life among pediatric patients with acute lymphoblastic leukemia: An exploratory cross-sectional study.

Background: Improved survival rates broadened the pediatric oncology focus to include health-related quality of life (HRQoL). This cross-sectional study aimed to examine HRQoL by treatment phase and disease risk level in pediatric patients with B-cell acute lymphoblastic leukemia (B-ALL), including those in early survivorship.

Procedure: A subset of data from a larger prospective cohort study was analyzed.

Perspectives on Virtual Care for Childhood Cancer Survivors in Non-Metropolitan Areas during the COVID-19 Pandemic.

The COVID-19 pandemic paved the way for the widespread use of virtual care for childhood cancer survivors (CCSs). CCSs were virtual recipients of diverse care, including long-term follow-up (LTFU), primary care, mental health care, and several others. Virtual care comes with well-documented benefits and challenges.

Palliative Care Interventions Among Adolescents and Young Adults with Serious Illness: A Scoping Review.

Objective: To map the range of multidisciplinary palliative care interventions that are available to adolescents and young adults (AYAs) with serious illness.

Methods: Scoping review methodology as outlined by Arksey and O'Malley.

Results: Twenty-two articles describing nine specific AYA-focused, multidisciplinary palliative care interventions were included in this review.

Acceptability and Feasibility of Text Message Interface to Assess Parents' Real-time PICU Experiences.

Introduction: Parents of children in the pediatric intensive care unit (PICU) experience substantial stress; a parent's perception of their child's illness severity, more than objective measures, predicts psychological outcomes. No tools exist to assess parents' real-time experiences. This pilot study evaluated the feasibility and acceptability of a text-based tool to measure parental experience.

Evaluation of a transition to survivorship program for pediatric, adolescent, and young adult cancer patients and caregivers.

Background: Survivorship education and anticipatory guidance represent an unmet need for pediatric, adolescent, and young adult (AYA) cancer survivors and their caregivers when treatment ends. This pilot study evaluated the feasibility, acceptability, and preliminary efficacy of a structured transition program, bridging treatment to survivorship, to reduce distress and anxiety and increase perceived preparedness for survivors and caregivers.

Procedure: Bridge to Next Steps is a two-visit program, within 8 weeks prior to treatment completion and 7 months post treatment, which provides survivorship education, psychosocial screening, and resources.

Family Caregiver Acceptability of Assessing Caregiver Adverse Childhood Experiences (ACEs) and Distress in Pediatric Specialty Care.

Introduction: Providing quality healthcare for children includes assessing and responding to needs of their family caregivers. Three salient domains to consider are caregivers' early adverse childhood experiences (ACEs), their current levels of distress, and their resilience in coping with both prior and current stressors.

Objective: Determine acceptability of assessing caregiver ACEs, current distress, and resilience in pediatric subspecialty care settings.

Playing With a Purpose: The Impact of Therapeutic Recreation During Hospitalization.

Youth undergoing cancer treatment and hematopoietic stem cell transplant (HSCT) spend significant time in the hospital, which is disruptive to their physical, social, and emotional development. Therapeutic recreation (TR) can help individuals with an illness maintain or improve their health, quality of life, and physical functioning. TR is an understudied intervention, particularly with youth in the hospital setting.

Distracting Through Procedural Pain and Distress Using Virtual Reality and Guided Imagery in Pediatric, Adolescent, and Young Adult Patients: Randomized Controlled Trial.

Background: Children with acute and chronic illness undergo frequent, painful, and distressing procedures.

Objective: This randomized controlled trial was used to evaluate the effectiveness of guided imagery (GI) versus virtual reality (VR) on the procedural pain and state anxiety of children and young adults undergoing unsedated procedures. We explored the role of trait anxiety and pain catastrophizing in intervention response.

"It Has Added Another Layer of Stress": COVID-19's Impact in the PICU.

Objective: The novel coronavirus disease 2019 (COVID-19) pandemic has dramatically changed health care delivery and impacted health care providers. However, little is known about the impact of the pandemic in PICUs. In this qualitative study, we aimed to assess pediatric critical care providers' perspectives on the impact of the COVID-19 pandemic on the experiences of patients and families in the PICU and on their personal and professional lives.

Evaluation of fatigue and related factors in survivors of pediatric cancer and hematopoietic stem cell transplant.

This study sought to better understand specific factors contributing to fatigue in survivors of pediatric cancer and hematopoietic stem cell transplant (HSCT). As part of a larger study evaluating long-term psychosocial functioning of pediatric cancer survivors, = 87 participants completed measures assessing fatigue and emotional and behavioral functioning. Chart abstraction was used to catalog diagnosis, treatments received, treatment intensity, and late effects.

Behavioral inhibition and activation as a modifier process in autism spectrum disorder: Examination of self-reported BIS/BAS and alpha EEG asymmetry.

The Modifier Model of autism spectrum disorder (ASD) suggests that phenotypic variability within ASD is rooted in modifier processes, such as the behavioral inhibition system (BIS) and behavioral activation system (BAS). Among a sample of 53 adolescents with ASD, this study examined associations between (a) self-reported BIS/BAS and frontal and parietal alpha electroencephalogram asymmetry and whether these indices related to (b) ASD severity (via the Autism Quotient), and/or (c) co-occurring anxiety and attention-deficit hyperactivity disorder (via Youth Self Report and Child Behavior Checklist). Findings showed that alpha asymmetry was associated with self-reported BAS scores, such that greater BAS was related to greater right-frontal hemisphere activation and relatively greater left-parietal hemisphere activation.

Social difficulties in youth with autism with and without anxiety and ADHD symptoms.

Social difficulties inherent to autism spectrum disorder are often linked with co-occurring symptoms of anxiety and attention deficit hyperactivity disorder (ADHD). The present study sought to examine the relation between such co-occurring symptoms and social challenges. Parents of adolescents with autism (N = 113) reported upon social challenges via the social responsiveness scale (SRS) and anxiety and ADHD symptomatology via the Child Behavior Checklist.

Social adjustment of adolescent cancer patients transitioning off active treatment: A short-term prospective mixed methods study.

Background: Psychosocial follow-up in survivorship is a standard of care in pediatric oncology; however, little is known about patients' psychosocial functioning during the transition off active treatment, a unique time in the cancer journey. This study examined the social adjustment of adolescent cancer patients during this transition period, which has been understudied to date.

Procedure: Participants were 21 patients (ages 12-18 years; age M = 14.

Decision-making, knowledge, and psychosocial outcomes in pediatric siblings identified to donate hematopoietic stem cells.

Purpose: To (a) describe the decision-making experience and psychosocial outcome of sibling hematopoietic stem cell (HSC) donors, and (b) to determine the feasibility of completing a prospective and longitudinal assessment of HSC sibling donors at a single institution.

Design: A mixed-methods approach was utilized.

Sample And Methods: 12 potential siblings HSC donors aged 10-21 years completed various psychological measures and participated in semi-structured interviews at three time points in the donation experience: pre-donation, within 1 week after the harvest procedure, and six months post-donation.

Assessment of end-of-treatment transition needs for pediatric cancer and hematopoietic stem cell transplant patients and their families.

Background/objectives: The transition off active treatment is a time of significant stress for pediatric cancer patients and families. Providing information and support at this time is among the new psychosocial standards of care in pediatric oncology. This study sought to explore patient and family needs and concerns at the end of their active cancer treatment.

Examining the Links Between Challenging Behaviors in Youth with ASD and Parental Stress, Mental Health, and Involvement: Applying an Adaptation of the Family Stress Model to Families of Youth with ASD.

Raising a child with autism spectrum disorder (ASD) poses unique challenges that may impact parents' mental health and parenting experiences. The current study analyzed self-report data from 77 parents of youth with ASD. A serial multiple mediation model revealed that parenting stress (SIPA) and parental mental health (BAI and BDI-II) appears to be impacted by challenging adolescent behaviors (SSIS-PBs) and, in turn, affect parental involvement (PRQ), controlling for social skills (SSIS-SSs).

Changes in Depressive Symptoms Among Adolescents with ASD Completing the PEERS Social Skills Intervention.

Depression is a common concern among people with autism spectrum disorder (ASD) and is often associated with social skills and relationship challenges. The present data, from a randomized controlled trial, examined the effect of PEERS on self-reported depressive symptoms via the Children's Depression Inventory (CDI) among 49 adolescents with ASD. Findings revealed that many CDI subscale scores declined (p's < 0.

Brief Report: Does Gender Matter in Intervention for ASD? Examining the Impact of the PEERS Social Skills Intervention on Social Behavior Among Females with ASD.

A paucity of research has been conducted to examine the effect of social skills intervention on females with ASD. Females with ASD may have more difficulty developing meaningful friendships than males, as the social climate can be more complex (Archer, Coyne, Personality and Social Psychology Review 9(3):212-230, 2005). This study examined whether treatment response among females differed from males.

A Replication and Extension of the PEERS® for Young Adults Social Skills Intervention: Examining Effects on Social Skills and Social Anxiety in Young Adults with Autism Spectrum Disorder.

Young adults with ASD experience difficulties with social skills, empathy, loneliness, and social anxiety. One intervention, PEERS® for Young Adults, shows promise in addressing these challenges. The present study replicated and extended the original study by recruiting a larger sample (N = 56), employing a gold standard ASD assessment tool, and examining changes in social anxiety utilizing a randomized controlled trial design.

Brief Report: Assessment of Intervention Effects on In Vivo Peer Interactions in Adolescents with Autism Spectrum Disorder (ASD).

This study aimed to evaluate the effectiveness of a randomized controlled trial of a social skills intervention, the Program for the Education and Enrichment of Relational Skills (PEERS: Laugeson et al. in J Autism Dev Disord 39(4): 596-606, 2009), by coding digitally recorded social interactions between adolescent participants with ASD and a typically developing adolescent confederate. Adolescent participants engaged in a 10-min peer interaction at pre- and post-treatment.

Providing Children and Adolescents Opportunities for Social Interaction as a Standard of Care in Pediatric Oncology.

Experiences with peers constitute an important aspect of socialization, and children and adolescents with cancer may experience reduced social interaction due to treatment. A literature review was conducted to investigate the evidence to support a standard of care evaluating these experiences. Sixty-four articles were reviewed using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) criteria.

Parent and family outcomes of PEERS: a social skills intervention for adolescents with autism spectrum disorder.

Raising a child with an autism spectrum disorder (ASD) is associated with increased family chaos and parent distress. Successful long-term treatment outcomes are dependent on healthy systemic functioning, but the family impact of treatment is rarely evaluated. The Program for the Education and Enrichment of Relational Skills (PEERS) is a social skills intervention designed for adolescents with high-functioning ASD.