2024 Volume 61 Issue 1 Pages 65-71
This study aimed to explore how mothers helped their children understand retinoblastoma and highlight the challenges they faced. Semi-structured interviews were conducted with 11 mothers with 3- to 7-year-old children diagnosed with retinoblastoma. The median age of these mothers was 42 years. Following the analysis, the study identified 12 categories of methods employed by mothers to help their children understand their medical condition and two categories of challenges mothers face.
In post-diagnosis periods, mothers “tailored information to their children’s understanding, avoiding in-depth discussions on the disease or treatment”. As the children grew, the mothers associated hospital visits with the eye disease while “stating that they were going to see the doctor for examination and testing of their eye disease”. Eye enucleation often prompted explanations of the treatment’s necessity. The mothers tended to “avoid using the word ‘cancer’ when explaining the disease’s impact on visual impairment or its life-threatening nature”. They carefully timed and curated discussions on “cancer”, prosthetic eyes, and visual impairment. Ultimately, addressing the topic of death was also necessary. Some mothers contemplated providing explanations that considered genetics and its implications for adulthood. Some mothers confessed to “experiencing feelings of shock and guilt”. To help children understand their illnesses better, the findings recommend a timely implementation of a well-planned explanation process, following the children’s growth and the emotional well-being of mothers from the early stages of their child’s diagnosis. Moreover, an interdisciplinary support system that encourages cooperation between different clinical departments and disciplines should be established.
