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.
Keywords
Retinoblastoma; Neoplasms; Child; Family; Health communication; Information