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

Abstract

Retinoblastoma is a primary malignant intraocular eye tumor of the eye that is most common in childhood. This cancer generates significant biopsychosocial impacts for affected children and their families. It is necessary to understand how the accompanying family members feel about coping with retinoblastoma to facilitate psychosocial well-being strategies and enhance improvements in health care. This research wants to apprehend the social representations of retinoblastoma and the monitoring of affected children according to family members. This is a social representation study, with a qualitative approach anchored in the Discourse of the Collective Subject. It was carried out through social media, which approached 114 family members of Brazilian children with retinoblastoma. For data collection, a structured script was created, with sociodemographic data of the children, their families, and the guiding questions: What is retinoblastoma for you? What do you think of following someone treating retinoblastoma? Quantitative data were analyzed using descriptive statistics and qualitative data using the Collective Subject Discourse. It was found that most of the companions were mothers (92.98%); age 33.95 years old (53.51%); more than 11 years of schooling (63.16%), housewives (22.81%); family income of one minimum salary (28.95%) and residents of the state of São Paulo (26.32%). As for the characteristics of the children, there was a prevalence of a mean age of 51.72 months of life (4.31 years); female (55.26%); no education (35.96%); with unilateral retinoblastoma (51.75%); with non-congenital and non-hereditary classification (40.35%); using the SUS services (57.89%) for treatment and monitoring and the state of São Paulo (72.81%). The social representations emerged by family members about the meanings of retinoblastoma were: “Ocular cancer / retinal tumor”; “Disease that can be cured if treated early, despite being severe”; “Rare tumor/cancer that may have genetic/hereditary origin”; “Silent, serious, difficult, aggressive disease that generates fear and affects the family”; “Cancer/tumor that affects babies and children”; “Phase, confrontation, changes, and new life”; “Unknown disease, little-publicized, no information, but frequent” and “Other meanings”; The social representations emerged by family members about monitoring children with retinoblastoma were: “Love, affection, companionship, zeal and care”; “Give up everything, be by your side, support, deliver, donation and union”; “Courage, strength, faith, hope for healing, resilience, perseverance, mission, and gratitude”; “Learning, growth, change and life lessons”; “Pain, fear, sadness, anguish, stress, tension, suffering and difficulties”; “Fight to save a life, war, battle against disease”; “Obligation and responsibility”; “Something fundamental and important” and “Other meanings”. The facets of retinoblastoma were represented heterogeneous by family members, addressed in an integrated and articulated way not only the meanings of the disease itself. But it also reflected the experience of living and monitoring the child with retinoblastoma in the clinical and family context. It concludes that a biopsychosocial approach, provided by the multidisciplinary team. In which nurses rely on social representations about retinoblastoma to enrich the care of children, their relatives are a valuable care strategy for the therapeutic itinerary in oncology.