Provider and caregiver perspectives on vision services for childhood cancer survivors: a qualitative study

This study qualitatively explored barriers and facilitators to accessing supportive vision services for childhood cancer survivors with vision deficits and identified current service-delivery contexts from the perspectives of community professionals and caregivers. Participants included caregivers and professionals who completed semi-structured interviews. Provider questions focused on patient identification and assessment, follow-up protocols, and available resources, while caregiver questions addressed navigating survivorship care, academic needs, and goals for their children. Transcripts were thematically analyzed following inductive and deductive coding. Six caregivers and 10 professionals completed interviews. Thematic analysis resulted in three contexts for barriers and facilitators: school settings, community organizations, and healthcare settings. Obstacles children and their families may face when navigating the care system include service eligibility, financial barriers, transportation barriers, and geographical barriers. Caregivers described their care navigation experience through the same three contexts. Childhood cancer survivors with retinoblastoma face substantial barriers to vision-related support across school, community, and clinical settings. This includes limited access to specialists, inequitable access to resources, and fragmented referral pathways. This study highlights the need for care coordination among healthcare providers, educators, and community agencies to improve functional, academic, and quality-of-life outcomes for this population. The high survival rate of retinoblastoma leaves a population with vision deficits, yet there remains a lack of integration of interventions for this population to address such deficits. Understanding barriers to vision care in survivorship can inform where to implement future interventions to increase this population’s health service utilization.