Access to legacy-oriented interventions at end of life for pediatric oncology patients: A decedent cohort review.

BACKGROUND: Legacy-oriented interventions have the potential to offer pediatric oncology patients and families comfort at end of life and during bereavement. Certified child life specialists often provide these services, and presently little is known about whether disparities exist in the provision of legacy-oriented interventions. METHODS: In this retrospective decedent cohort study, we examined demographic and clinical characteristics from a sample of 678 pediatric oncology patients who died between 2015 and 2019. Bivariate analysis assessed differences between patients who received any versus no legacy-oriented intervention. Uni- and multivariable logistic regression models assessed associations of baseline characteristics and likelihood of receiving legacy-oriented intervention. Further multivariable analysis explored joint effects of significant variables identified in the univariable analysis. RESULTS: Fifty-two percent of patients received a legacy-oriented intervention. Older adolescents (≥13 years) were less likely (odds ratio [OR]: 1.73, p = .007) to receive legacy-oriented interventions than younger ones. Patients with home/hospice deaths were also less likely (OR: 19.98, p < .001) to receive interventions compared to patients who passed away at SJCRH locations. Hispanic patients (OR: 1.53, p = .038) and those in palliative care (OR: 10.51, p < .001) were more likely to receive interventions. No significant race association was noted. CONCLUSION: All children and adolescents with cancer deserve quality care at end of life, including access to legacy-oriented interventions, yet nearly half of patients in this cohort did not receive these services. By identifying demographic and clinical characteristics associated with decreased odds of receiving legacy-oriented interventions, healthcare professionals can modify end-of-life care processes to improve access. Introducing legacy-oriented interventions early and increasing exposure in community spaces may enhance access to legacy-oriented interventions for pediatric oncology patients.

Racial Disparities in the Provision of Pediatric Psychosocial End-of-Life Services: A Systematic Review.

Background: When compared with White patients, racial and ethnic minorities experience greater barriers to quality end-of-life care. Each year, approximately 52,000 children die in the United States, yet little is known about the disparities in pediatric palliative care, especially when looking at psychosocial palliative care services such as those provided by child life specialists, social workers, and pediatric psychologists. Objectives: In an effort to consolidate and synthesize the literature on this topic for psychosocial professionals working with children and families confronting a life-threatening diagnosis, a review was conducted. Design: This work was a systematic review of several academic databases that were searched from January 2000 to December 2020 for studies exploring disparities in pediatric end-of-life services and written in English. Setting/Subjects: This review was conducted in the United States. The search yielded 109 articles, of which 16 were included for review. Measurements: Three psychosocial researchers independently reviewed, critically appraised, and synthesized the results. Results: Emerging themes from the literature (n = 16) include service enrollment, decision making, and communication. Results highlight a lack of research discussing psychosocial variables and the provision of psychosocial services. Despite this gap, authors were able to extract recommendations relevant to psychosocial providers from the medical-heavy literature. Conclusions: Recommendations call for more research specific to possible disparities in psychosocial care as this is vital to support families of all backgrounds who are confronting the difficulties of pediatric loss.

A Systematic Literature Review of Child Life in Ambulatory Settings.

This article illustrates the growth and development of the profession of child life within the last 25 years through a literature review of child life services in ambulatory settings. We reviewed all literature chronicling child life services in ambulatory settings published between January 1993 and December 2018 in three major databases, synthesizing common themes across the literature. Over the last 25 years, growth has occurred in the provision of child life interventions in outpatient settings and more publications are being produced. In outpatient settings, procedural support interventions have been written about the most, with much of this literature coming after 2010. [Pediatr Ann. 2020;49(11):e491-e498.].

Medical Encounters for Youth With Autism Spectrum Disorder: A Comprehensive Review of Environmental Considerations and Interventions.

Approximately 1 in 59 youth are currently diagnosed with autism spectrum disorder (ASD), a neurodevelopmental disorder. In comparison to typically developing peers, youth with ASD encounter hospitalization at higher rates due to their heightened health care needs. While visiting the hospital is a stressor for youth with neurotypical needs, the experience contains unique challenges for those with ASD. This systematic literature review highlights research that considers the psychosocial impact of the hospital environment on the coping and adjustment of youth with ASD. Specifically, the review focuses on recommendations and interventions that may be used by health care professionals while supporting this population as they encounter the health care system. Ninety-six articles were identified as meeting inclusion and exclusion criteria. The findings suggest that practicing clinicians should implement a wide variety of interventions for youth with ASD including diversion techniques, comfort positions, and picture schedules. Although there are published evidence-based interventions for supporting youth with ASD in the hospital, most clinicians lack ASD-specific training. This article concludes with recommendations for future research.

Play-based procedural preparation and support intervention for cranial radiation.

PURPOSE: The primary objective of this study was to examine the relationship between play-based procedural preparation and support intervention and use of sedation in children with central nervous system (CNS) tumors during radiation therapy. The secondary objective was to analyze the cost-effectiveness of the intervention compared to costs associated with daily sedation. METHODS: A retrospective chart review was conducted, and 116 children aged 5-12 years met criteria for inclusion. Outcome measures included the total number of radiation treatments received, the number of treatments received with and without sedation, and the type and duration of interventions, which consisted of developmentally appropriate play, education, preparation, and distraction provided by a certified child life specialist. RESULTS: The results of univariate analyses showed that age, tumor location, and total number and duration of interventions were significantly associated with sedation use during radiation therapy. Multivariate analyses showed that, after adjustment for age, tumor location, and craniospinal radiation, a significant relationship was found between the total number and duration of the interventions and sedation use. The implementation of a play-based procedural preparation and support intervention provided by a certified child life specialist significantly reduced health-care costs by decreasing the necessity of daily sedation. CONCLUSIONS: Support interventions provided by child life specialists significantly decreased both sedation use and the cost associated with daily sedation during cranial radiation therapy in children with CNS tumors. This study supports the value of the child life professional as a play-based developmental specialist and a crucial component of cost-effective healthcare.

Pediatric HIV disclosure: a process-oriented framework.

As children with vertically transmitted human immunodeficiency virus (HIV) infection live into adulthood, caregivers face the stressful process of informing their children about their infection. Although developmentally guided disclosure of HIV status is widely recommended, there are few specific frameworks to guide caregivers, families, and health care providers through the disclosure process. The authors propose a process-oriented framework for the disclosure of HIV in children and adolescents. This educational framework incorporates Piaget's cognitive development theory in an attempt to disclose and assist children and adolescents in understanding their HIV status. The framework is organized into 10 sequential stages of disclosure and three assessment stages in which health care providers discuss HIV health concepts with the child and caregiver, based on the child's developmental readiness. The described framework can be easily replicated by health care providers in disclosing disease status to children with HIV.

The role of E-mentorship in a virtual world for youth transplant recipients.

Because of geographic distances, many youth transplant recipients do not have the opportunity to meet and form relationships with peers who have undergone similar experiences. This article explores the role of E-mentorship in virtual environments. Most specifically, by analyzing data from a study conducted with the Zora virtual world with pediatric transplant recipients, suggestions and recommendations are given for conceiving the role of virtual mentors and allocating the needed resources. Zora is a graphical virtual world designed to create a community that offers psychoeducational support and the possibility of participating in virtual activities following a curriculum explicitly designed to address issues of school transition and medical adherence. Activities are designed to foster relationships, teach technological skills, and facilitate the formation of a support network of peers and mentors.This article addresses the research question, "What makes a successful E-mentorship model in virtual worlds for children with serious illnesses?" by looking at E-mentoring patterns such as time spent online, chat analysis, initiation of conversation, initiation of activities, and out-of-world contact.