Optimization of a digital health intervention to enhance well-being among adolescent and young adult cancer survivors: Design and methods of the EMPOWER full factorial trial.

Adolescent and young adult cancer survivors (AYAs) experience clinically significant distress and have limited access to supportive care services. Interventions to enhance psychological well-being have improved positive affect and reduced depression in clinical and healthy populations and have not been routinely tested in AYA survivors. We are optimizing a web-based positive skills intervention for AYA cancer survivors called Enhancing Management of Psychological Outcomes With Emotion Regulation (EMPOWER) by: (1) determining which intervention components have the strongest effects on well-being and (2) identifying demographic and individual difference variables that mediate and moderate EMPOWER's efficacy.

Return-to-School Experiences of Adolescents After Allogeneic Hematopoietic Cell Transplant: A Qualitative Interview Study of Transplant Recipients.

Background: Returning to school after allogeneic hematopoietic cell transplant (HCT) can improve quality of life and promote positive adjustment. However, this process may be challenging, and there is a limited understanding of school-aged children and adolescents' perspectives on this process.

Methods: We conducted semi-structured interviews over video with pediatric recipients of HCT (10-18 years of age at HCT; 1-7 years post HCT) who were treated at our institution and had returned to in-person school post HCT.

A Photo-Narrative Intervention for Children with Severe Neurological Impairment in the PICU.

Background: Parents of children with severe neurological impairment (SNI) face barriers in the pediatric intensive care unit (PICU) to humanistic care. Photo-narratives are a promising strategy to share perspectives about well-being. This study describes the iterative refinement and lessons learned in adapting a photo-narrative intervention for children with SNI in the PICU.

Parents' Experiences With and Preferences for Receiving Information About Tumor Genomic Sequencing: Findings From a Qualitative Study and Implications for Practice.

Purpose: The use of up-front tumor genomic sequencing (TGS) is becoming increasingly common in pediatric oncology. Despite this, little is known about how parents receive information about TGS at the time of their child's cancer diagnosis. We aimed to describe parents' experiences with and preferences for receiving information about TGS and to use these findings to inform practical guidance for pediatric oncology clinicians.

Supporting the Well-Being of Children and Youth With Special Health Care Needs: NASEM Proceedings.

Children and youth with special health care needs (CYSHCN) are living longer than ever. These advances come with a price: Patients, families, communities, and systems must absorb the challenges of chronic caregiving, including protracted stress and poor mental health. In 2023, the National Academies of Science, Engineering, and Medicine convened thought-leaders for conversations about supporting the emotional well-being of CYSHCN and their families.

Alignment of Palliative Care Service Structure and Standards of Care for Adolescents and Young Adults with Cancer: An International Survey of Clinical Practice.

Access to timely, age-appropriate palliative care services and end-of-life communication are two standards of care for adolescents and young adults (AYAs) living with cancer where cure is uncertain or unlikely. Health professionals' capacity to facilitate these standards is critical. This study aimed to understand AYA oncology health professionals' experienced practices in, and barriers to, delivering these standards of care across palliative care and end-of-life communication in Australia, New Zealand, and the United Kingdom (UK).

Adaptation and feasibility of the Swedish Promoting Resilience in Stress Management intervention targeting adolescents and young adults newly diagnosed with cancer.

Objective: To describe the adaptation and feasibility of the Swedish version of the Promoting Resilience in Stress Management (PRISM) intervention among adolescents and young adults (AYAs) newly diagnosed with cancer.

Methods: PRISM is a 5-session, manualized program designed to strengthen AYAs individual resources for managing stress by promoting resilience skills: stress-management, goal-setting, cognitive reframing and meaning-making. It is delivered 1:1 by an interventionist video-visits.

Experiences in Coping with Stress-A Qualitative Study of Family Caregivers of Children with Medical Complexity.

Objective: To better understand the strategies family caregivers of children with medical complexity (CMC) utilize to deal with the stress and challenges associated with caregiving.

Methods: We conducted a cross-sectional qualitative study among family caregivers of CMC receiving medical care at a children's hospital in Western Pennsylvania. Participants completed in-depth, semi-structured interviews focused on how CMC family caregivers approach and manage caregiving-related challenges and stress.

Resilience Intervention Improves Stress-Related Gene Expression in Adolescent and Young Adult HCT Recipients.

Overactivation of the stress response can influence cancer outcomes through immune-related pathways. Adolescents and young adults (AYAs) undergoing hematopoietic cell transplantation (HCT) are at risk for poor outcomes, yet there are limited behavioral interventions and no psychosocial biomarker data for this population. The Conserved Transcriptional Response to Adversity (CTRA) is an inflammation-related pattern observed in conditions of heightened stress and is associated with HCT outcomes.

Bereaved Parents' Perspectives on Financial Toxicity at End of Life for Children with Cancer: A Qualitative Study.

Objective: To explore financial toxicity (FT) experienced by the parents of children with cancer at end-of-life (EOL), including exploring differences by race and ethnicity.

Study Design: We performed secondary analysis of semistructured interviews of bereaved parents' perspectives on quality EOL care. Fifty-five interviews were conducted in California and Alabama representing 48 children (0-21 years at time of death) who died of cancer ≥6 months prior.

Promoting Resilience in Stress Management for Adolescents With Type 1 Diabetes: A Randomized Clinical Trial.

Importance: Type 1 diabetes (T1D) requires demanding self-management health behaviors, and adolescents with T1D are at risk for poor psychosocial and medical outcomes. Developing resilience skills may help adolescents with T1D and elevated distress navigate common stressors and achieve positive outcomes.

Objective: To test the efficacy of the Promoting Resilience in Stress Management (PRISM) intervention on levels of hemoglobin A1c (HbA1c), diabetes distress, self-management behaviors, resilience, and quality of life among adolescents.

Bereaved parent preferences on quality end-of-life care for children with cancer in the South.

Purpose: The authors sought to understand bereaved family preferences for end-of-life (EOL) care, particularly among Black families and those in the South.

Methods: Semi-structured interviews were conducted with parents of children who died of cancer ≥6 months before at Children's of Alabama. Themes were identified via content analysis.

Quality of Care in the Last Two Years of Life for Children With Complex Chronic Conditions.

Context: Limited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL).

Objective: To examine hospital performance on EOL quality measures and to describe healthcare services during the last two years of life for children with CCCs who died in-hospital.

Methods: Retrospective automated electronic health record review of children with ≥1 CCC ICD-10 diagnosis code, who died inpatient between October 2020 and March 2023 at a single quaternary U.

Mobile App Promoting Resilience in Stress Management for Adolescents and Young Adults With Cancer: Protocol for a Pilot Randomized Controlled Trial.

Background: Adolescents and young adults (AYAs) with cancer are at risk of poor psychosocial outcomes. AYAs grew up with the internet and digital technology, and mobile Health (mHealth) psychosocial interventions have the potential to overcome care access barriers.

Objective: This pilot randomized controlled trial (RCT) aimed to establish the feasibility, acceptability, and preliminary efficacy of a fully automated mobile app version of the Promoting Resilience in Stress Management intervention (mPRISM).

Rationale and design of a randomized controlled clinical trial of a resilience-building intervention in adults with congenital heart disease.

Background: Adults with congenital heart disease (ACHD) are at risk for lower quality of life (QOL) and psychological health. Behavioral interventions to meet their psychosocial needs are lacking. The aim of this study is to evaluate the feasibility of implementing the Promoting Resilience in Stress Management (PRISM) intervention in ACHD and its efficacy in increasing resilience in this population.

Resilience and distress among adolescents and young adults receiving hematopoietic cell transplantation: The Promoting Resilience in Stress Management randomized trial.

Background: Adolescents and young adults (AYAs) receiving hematopoietic cell transplantation (HCT) are at high risk of poor psychosocial health. This study aimed to determine whether the Promoting Resilience in Stress Management (PRISM) intervention mitigated these risks during the first 6 months posttransplant.

Methods: This multisite, parallel, randomized trial was conducted from April 2019 to March 2023.

Impact of Subspecialty Pediatric Palliative Care on Children with Heart Disease; A Systematic Review and Meta-analysis.

While many experts in pediatric cardiology have emphasized the importance of palliative care involvement, very few studies have assessed the influence of specialty pediatric palliative care (SPPC) involvement for children with heart disease. We conducted a systematic review using keywords related to palliative care, quality of life and care-satisfaction, and heart disease. We searched PubMed, EMBASE, CINAHL, CENTRAL and Web of Science in December 2023.

Household material hardship and distress among parents of children with advanced cancer: A report from the PediQUEST Response trial.

Background: The prevalence and characteristics of household material hardship (HMH) in families of children with advanced cancer and its association with parent distress are unknown and herein described.

Methods: Parents of children aged ≥2 years with advanced cancer at five cancer centers completed baseline surveys as part of the PediQUEST Response trial. HMH (housing, energy, and food) was operationalized as binary (≥1 HMH domains), ordinal (zero, one, or two or more HMH domains), and housing based (none, nonhousing [food and/or energy], only housing, or housing + other).

Key Psychosocial Health Outcomes and Association With Resilience Among Patients With Adult Congenital Heart Disease.

Background: Adult congenital heart disease (ACHD) can negatively impact quality of life (QOL). Strengthening resilience may improve this and other psychosocial outcomes important for living a meaningful life.

Objectives: The purpose of this study was to describe resilience and key psychosocial health outcomes in ACHD and evaluate the associations between resilience and these outcomes.

Family characteristics and childcare patterns associated with early social functioning in cancer-bereaved parents.

Background: Bereaved parents experience life-long grief after the death of their child from cancer. Parents who can integrate their grief and maintain their social functioning early in bereavement, even in the setting of concurrent psychosocial distress, have improved outcomes. Identifying the factors associated with bereaved parents' early social functioning can guide future supportive interventions.

Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit.

Children with severe neurological impairment (SNI) often receive care in the pediatric intensive care unit (PICU), yet little is known about their parents' experiences. To examine sources of and changes in stress among parents of children with SNI in the PICU. To compare stressors with "good parent" attributes that describe duties parents aim to uphold for their child.