Parents of Youth With Cancer Report on Their Psychosocial Care: iSTEPPP Survey Finds Alignment and Gaps With Standards.

Abstract

Background: The Standards for Psychosocial Care for Children with Cancer and Their Families guide the provision of comprehensive psychosocial care. Parallel to research characterizing implementation of the Standards from the perspective of providers, this study examines implementation of the Standards from the perspective of parents of youth with cancer.

Procedure: A national sample of parents of youth with cancer (N = 306), diverse in demographics and cancer characteristics, was recruited with Momcology (a patient-family support and advocacy organization). Parents completed an online survey about the psychosocial care their family received.

Results: Fewer than half of parents agreed their psychosocial care was comprehensive and state of the art, and more than half endorsed unmet psychosocial needs. More consistently received Standards (endorsed by 55-87% of parents) include those closely connected with medical treatment (i.e., psychoeducation, adherence, coping with procedures, finances), patients' needs during treatment (i.e., psychosocial assessment and support, neurocognitive monitoring, guidance about survivorship), and end of life/bereavement. Less consistently received Standards (endorsed by only 32-49% of parents) include those related to school, social interaction, psychosocial screening in survivorship, palliative care, and family-centered psychosocial support for parents and siblings.

Conclusions: The Standards least commonly received are those that do not fit "neatly" within the healthcare system, either because they include services for family members or collaborations with other systems. However, family-centered care and supporting patients beyond active treatment are crucial to adaptive adjustment to cancer. Strategies are needed to support consistent delivery of the Standards that are not yet well implemented.