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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.

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

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