Social Representations of Retinoblastoma: Family Perspectives

Abstract

Introduction: Retinoblastoma, a primary intraocular malignancy predominant in childhood, profoundly impacts the lives of children and their families. Understanding the perceptions and feelings of family members facing this challenge is crucial for optimizing psychosocial well-being and healthcare quality. Objective: To understand the social representations attributed to retinoblastoma, as expressed by family members accompanying children affected by cancer. Method: A social representation research was conducted, involving 114 relatives of Brazilian children with retinoblastoma. The study project received prior approval from the Research Ethics Committee
of the proposing institution in Brazil, with reference to CAAE No. 24821819.3.0000.5142 and Opinion No. 3,698,834 dated November 12, 2019. The study employed a qualitative approach anchored in the Collective Subject Discourse. The qualitative approach anchored in the Subject Collective Discourse was employed. A structured digital form was used to collect sociodemographic data of the children and their families, as well as to record perceptions of retinoblastoma. The participants’ characterization data were presented through descriptive statistical analysis, while the discursive responses that constituted the qualitative data were analyzed using the Collective Subject Discourse method. Results: The study involved 114 family members of children diagnosed with retinoblastoma. Most were adult female family members, primarily mothers aged 30 to 39, with over 11 years of education. The affected children were mostly female, aged between 25 to 62 months. Predominantly, cases were non-hereditary and were treated through public health services in São Paulo. Emerging social representations of retinoblastoma among family members included: “Ocular cancer / tumor in the retina”, “Curable disease when treated early, despite severity”, “Rare tumor / cancer with possible genetic / hereditary origin”, “Silent, serious, difficult, aggressive disease causing fear and affecting the family”, “Cancer / tumor afflicting infants and children”, “Phase, coping, change, and new life”, “Unknown, underpublicized disease with limited information, yet frequent”, and “Other meanings”. Conclusion: Family members demonstrated diverse meanings, perceptions, and knowledge regarding retinoblastoma, addressing not only the nature of the disease but also the complexity of the experience of caring for an affected child. These representations underscore the need for a biopsychosocial care approach, emphasizing family perspectives, to enhance multiprofessional care and the therapeutic journey of children with retinoblastoma.