Objective: The objective of this topical review is to provide a rationale for the development of standards of care to address the mental health needs of caregivers of youth with chronic and acute conditions. Method: In this topical review, we describe the relationship between pediatric medical conditions and caregiver mental health, the state of available screening and intervention options, standards of care in medicine, existing caregiver mental health standards in pediatric subspecialty populations, and exemplar caregiver mental health programs that were developed in response to standards. Finally, we will describe our rationale for this standard of care, provide a call to action, and describe anticipated challenges in developing and implementing such standards. The content of this topical review was guided by expert knowledge, literature review, and communication with members of the American Psychological Association Division 54 through listserv communication. This review did not involve human subjects research and thus did not require Institutional Review Board approval, informed consent, or assent. Results: Standards of Care to address caregiver mental health in pediatrics is one approach to reduce gaps between caregivers’ needs and access to treatment. Standards that address caregiver mental health exist for a subset of pediatric medical subspecialty populations but are nonexistent across most pediatric populations. Conclusions: Multidisciplinary collaboration, with broad stakeholder input, could result in the writing of Standards of Care to lead to program development that addresses mental health for caregivers of children with a range of chronic and acute conditions. Implications for Impact Statement: This topical review calls attention to the gap between what is known about the mental healthcare needs of caregivers of children with chronic and acute conditions and the implementation of assessments and interventions to address these needs. The development of standards of care is one way to bridge this gap and could lead to the development of universally implemented caregiver mental health supports in pediatric healthcare settings.

PURPOSE: To describe the trajectory of cognitive and adaptive functioning in pediatric patients with retinoblastoma from diagnosis through age 10. This is an extension of a previous report that discussed findings from diagnosis through age 5. PATIENTS AND METHODS: Ninety-eight participants with retinoblastoma completed psychological assessments as part of their enrollment on an institutional treatment protocol, with 73 completing an additional assessment at age 10. Trajectories of adaptive and cognitive functioning were determined, with data analyzed by treatment strata, and patients with 13q- analyzed separately. RESULTS: Longitudinal trajectories identified a significant change point in trends at age 5, with functioning declining from diagnosis through age 5 and then increasing from age 5 to age 10. This pattern was observed for all strata for adaptive functioning, but only for enucleation-only patients (strata C low) for cognitive functioning. Cognitive trajectories were also influenced by laterality and enucleation status. At age 10, overall functioning was generally within the average range, although estimated intelligence quotient was significantly below the normative mean for enucleation-only (C low) patients. Patients with 13q- demonstrated very low functioning, but few analyses were significant because of small sample size. CONCLUSION: The results generally indicate that previously demonstrated declines in functioning from diagnosis through age 5 improve by age 10. However, these early declines, as well as the continuous difficulties observed in patients treated with enucleation only, suggest the need for early intervention services for young patients with retinoblastoma. Continuous monitoring of the psychological functioning of patients with retinoblastoma, increased awareness of risk factors such as unilateral disease, enucleation, race, and surgery-only treatment plans, and referral to Early Intervention for all patients are indicated.

Background: The Standards for the Psychosocial Care of Children with Cancer and their Families provide a framework for the delivery of psychosocial care to families experiencing pediatric cancer. Similarly, the Pediatric Psychosocial Preventative Health Model (PPPHM) guides intervention approaches by identifying three tiers of psychosocial support based on a family’s level of risk. Employing both the Standards and the PPPHM, we developed a comprehensive three-tiered approach to support the psychosocial needs of families in a pediatric oncology setting. Methods: After publication of the Standards, our institution merged existing psychosocial disciplines into one unified Psychosocial Services department. The new department worked to clearly define the role and scope of each discipline’s practice to ensure the psychosocial needs of patients and families were being comprehensively met. Interprofessional workgroups were established to evaluate and enhance the psychosocial services offered to patients, siblings, and caregivers using a three-tiered model of support. Membership included representation from patients and parent/caregiver advisors to ensure their perspectives were included in program development. Results: Over ten new programs have been developed to enhance the support of families facing pediatric cancer. At the Universal tier, new programs available to all families include caregiver and sibling support groups, a caregiver podcast, and a relationship health toolkit and workshop. At the Targeted tier, psychosocial interventions and parent mentor supports were implemented. At the Clinical/Intervention tier, a partnership was developed with an external tele-mental health company to provide mental health services to caregivers with significant needs or preexisting mental health disorders. Conclusions: Given the complex needs of families facing pediatric cancer, use of an interdisciplinary approach is paramount to successful support throughout the treatment trajectory. By leveraging the expertise and strengths of diverse disciplines with the perspectives of patients and families, new psychosocial programs can comprehensively address the unique challenges of patients and families impacted by illness.

Consistent with the core underpinnings of advocacy within the field of pediatrics, the discipline of pediatric psychology places an emphasis on advocating for children through clinical and research efforts as well as through a systems approach of interdisciplinary collaboration and partnering with others. In the current article, the role of advocacy efforts for pediatric psychologists within children's hospitals are highlighted. Various forms and models of advocacy are discussed, particularly as they relate to individual and organizational advocacy within children's hospitals, as well as interdisciplinary collaboration and shared advocacy with other health care providers and leadership. Training of pediatric psychologists in advocacy is also addressed, including limitations in development and application of advocacy skills for pediatric psychologists. Examples of policy change at the hospital/institutional, state, and national levels are also provided. While pediatric psychologists are in unique positions to advocate for their patients within interdisciplinary health care settings, challenges in advocacy exist. Future directions for improving advocacy for pediatric psychologists are explored. (PsycINFO Database Record (c) 2019 APA, all rights reserved).