Representações sociais sobre o retinoblastoma e o acompanhamento das crianças acometidas segundo familiares

Retinoblastoma is the most frequent malignant intraocular tumor in childhood. This study sought to understand the social representations of retinoblastoma according to family members with children affected by cancer. The representations were heterogeneous, addressing the meanings of the disease and the experience of living with cancer in the clinical and family context. Understanding these findings is important for the provision of comprehensive, interdisciplinary, quality, child and family-centered cancer care.

视网膜母细胞瘤（Retinoblastoma）是儿童最常见的眼内恶性肿瘤。本研究旨在从罹患癌症患儿的家属视角出发，探究其对该疾病的社会表征。此类社会表征具有异质性，涵盖了疾病的内涵意义，以及临床与家庭场景下携癌生存的体验。明晰上述研究结果，对于提供全面、跨学科、高质量且以儿童与家庭为中心的癌症照护服务具有重要意义。