Many oncologists and psychosocial leaders perceive that the delivery of psychosocial care at their center is consistent with the Standards. However, care is quite variable, with evidence for the value of more integrated models of psychosocial services.
Background
Fifteen evidence-based Standards for Psychosocial Care for Children with Cancer and their Families were published in 20151. The Standards cover a broad range of topics and circumstances and require qualified multidisciplinary staff to be implemented. This paper presents data on the availability of psychosocial staff and existing practices at pediatric oncology programs in the United States, providing data that can be used to advocate for expanded services and prepare for implementation of the Standards.
Procedure
Up to three healthcare professionals from 144 programs (72% response rate) participated in an online survey conducted June – December 2016. There were 99 pediatric oncologists with clinical leadership responsibility (Medical Director/Clinical Director), 132 psychosocial leaders in pediatric oncology (Director of Psychosocial Services/Manager/most senior staff member), and 58 administrators in pediatric oncology (Administrative Director/Business Administrator/Director of Operations). The primary outcomes were number and type of psychosocial staff, psychosocial practices, and identified challenges in the delivery of psychosocial care.
Results
Over 90% of programs have social workers and child life specialists who provide care to children with cancer and their families. Fewer programs have psychologists (60%), neuropsychologists (31%) or psychiatrists (19%). Challenges in psychosocial care are primarily based on pragmatic issues related to funding and reimbursement.
Conclusion
Most participating pediatric oncology programs appear to have at least the basic level of staffing necessary to implement of some of the Standards. However, the lack of a more comprehensive multidisciplinary team is a likely barrier in the implementation of the full set of Standards.
This systematic review provides a synthesis of randomized-controlled trials of technology-focused family interventions for children with chronic illnesses and their families, focused on describing the current state of the literature and generating recommendations for future family systems work in the field of eHealth/mHealth. Twenty-three studies met inclusion criteria and were included in the systematic review. No identified studies featured an mHealth delivery modality. Relevant data were extracted and studies were assessed for quality. There was great variability with regard to intervention factors (e.g., format) and family-centered intervention targets. There is some evidence that eHealth interventions may lead to improvements in particular domains of family functioning (e.g., family conflict) for some groups of participants. However, mixed results and selection of numerous different intervention targets by investigators make it challenging to draw summative conclusions about the overall effectiveness of family systems eHealth interventions. Future research should move beyond feasibility/acceptability studies and examine family-centered processes as primary outcomes. Future research should also consider novel intervention formats to determine whether intervention effects are more robust for certain groups (e.g., individuals who prefer electronic intervention delivery to in-person intervention).
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