Multilevel Facilitators and Barriers to Healthcare Organization and Delivery among Childhood Cancer Survivors

Abstract

BackgroundChildhood cancer survivors (CCS) are at risk for medical and psychosocial late effects of their disease and its treatment and are recommended to receive annual follow‐ups. Yet, rates of follow‐up adherence are suboptimal and may be influenced by the organization and delivery of their healthcare. This research aimed to examine experts’ perceptions of facilitators and barriers to healthcare organization and delivery to CCS.ProcedureThirty‐one clinicians and administrators in a comprehensive cancer center's research consortium were interviewed about system‐level factors that may promote or deter annual follow‐ups among CCS. Interview transcripts were coded and inductively analyzed using a study‐specific scheme.ResultsThree main themes were identified: (1) healthcare system influences (59%); (2) social determinants of health (25%); and (3) intra/interpersonal factors (16%). Prominent subthemes included age‐related changes in the transition of healthcare responsibility that disrupt ongoing CCS care (28.1%), the breadth and quality of psychosocial support available to navigate CCS to follow‐up (13.5%), and transportation challenges (24.6%; especially in low‐resource areas). In contrast, community trust facilitated follow‐up (17.3%).ConclusionThe system of healthcare was prominent in receipt of follow‐up by CCS, and further influenced by social determinants of health and intra/interpersonal factors. Easing transitions of responsibility (from parents to CCS, and acute care to survivorship teams) may be beneficial, especially when social determinants of health obstacles are present. Psychosocial wrap‐around care is essential, along with promoting staff awareness of obstacles that CCS encounter in low‐resource communities.