Process of parenting a child with retinoblastoma while guiding him or her toward disease acceptance

Background : Retinoblastoma（RB） occurs at a very young age. Since the disease is diagnosed at an early age, the family is responsible for the care of the childʼs disease acceptance.
Objective : This study aims to explore the parenting process of children with RB toward disease acceptance.
Methods : Parents of eleven children with RB living in Japan were interviewed, and the data were analyzed using the Modified Grounded Theory Approach of Kinoshita（M-GTA）.
Results : There were twenty-one concepts representing the process of parenting a child with RB while guiding him or her toward disease acceptance, and nineteen of them were classified into ten categories based on semantic similarities. The two other concepts showed similar interpretability to categories. These categories and concepts were summarized into two core categories : “Helping the child develop a positive mindset to define the disease as a part of him/herself ” and “Paving the way in advance for the child to live comfortably when his or her living space expands”.
Conclusions : In a cyclical framework of parenting, consisting of two core categories described in Results, the parents coordinated these two approaches while maintaining balance by “Avoiding saying anything that does not need to be said” and established their process of parenting a child with RB while guiding him or her toward disease acceptance, according to their household situation. The results suggest the necessity of recognizing that in childhood-onset cancers, such as RB, and diseases involving genetic issues, problems tend to occur not only during the treatment period but also at the time of life events and providing support from a comprehensive perspective.