The strength of information on retinoblastoma for the family of the child

Abstract

Objective: To understand the need for information from the family members of children with retinoblastoma. Methods: A qualitative study based on the Patient and Family Centered Care Model. Families of children undergoing treatment at a referral institution in pediatric oncology participated. Qualitative content analysis guided the data collection and analysis. Results: The strength of information on retinoblastoma for the family of these children reveals the value the family assigns to the information about the child's illness during a time of intense suffering; the paths they take to obtain the information; and, the elements considered to be essential to feel fulfilled in their own right. Conclusion: Provision of information that respects the family's time is essential; it must be honest, and contemplate future perspectives for the child, in a dialogical space. Thus, a practice based on the Patient and Family Centered Care Model is promoted.