Child with Retinoblatoma: Diagnosis Announcement, Difficulties and Parent’s Experiences

Abstract

Introduction: Retinoblastoma is a cancerous tumor of the retina. It is a rare pathology that affects each year, in France, one child out of 15,000 to 20,000 births. In Morocco, and in a prospective study conducted over 2 years and 3 months in the pediatric ophthalmology department in Casablanca, the annual incidence of retinoblastoma was estimated at 18 cases per year. The diagnosis of cancer, like any other serious illness, provokes an intense feeling of guilt in the child and in his parents. The retinoblastoma diagnosis announcement remains a difficult and delicate moment for caregivers and parents. The purpose of our work is to describe the experience of the parents of a child with retinoblastoma and to assess the degree of satisfaction of these children both for the treatment of their child and for clarity. information transmitted. Material and method: We conducted a descriptive cross-sectional study of the parents of children with retinoblastoma who received care in the ophthalmology department of Mohammed VI CHU Marrakech Morocco, and this over a period of one year from March 2016 to March 2017. The data is collected from parents with a questionnaire aimed to assess the parents' feelings and experiences around the following areas: the announcement structure, the climate of trust, proposal of formalizing personalized support. Results: The average age of children at the time of diagnosis is 11 months, with a male predominance, sex ratio is 1.4. All families had one sick child. Retinoblastoma was bilateral in two cases. The surgical treatment was radical in all cases. 75% felt that the doctor was able to find the right words to announce the disease, and 42% felt he found the right words. At the time of diagnosis, 11 out of 12 families felt that they had received sufficient listening from the healthcare professionals and 75% felt that listening was quite sufficient. All parents report that the doctor who made the announcement spoke to them with care and respect and 92% spoke on the extreme positive score. 66% of families report receiving a personalized care plan. Conclusion: The results of this study will improve the overall care provided to children and integrate the difficulties expressed and felt by parents to the care project.

Caring for a child with retinoblastoma: Experience of Ethiopian parents

“…Anxiety and uncertainty would likely be heightened if parents of children with retinoblastoma lack relevant knowledge 25 . Kachouchi and colleagues reported that parents are confronted with the psychic ambiguity and vagueness of the information at the time of the diagnosis after days of waiting and bewilderment 37 . These negative experiences might be alleviated with empathetic communication methods that ensure parents have understood the necessary information, and ensuing emotions are effectively anticipated and managed.…”

“…25 Kachouchi and colleagues reported that parents are confronted with the psychic ambiguity and vagueness of the information at the time of the diagnosis after days of waiting and bewilderment. 37 These negative experiences might be alleviated with empathetic communication methods that ensure parents have understood the necessary information, and ensuing emotions are effectively anticipated and managed. To this effect, using a standard protocol for "breaking bad news" can promote a better psychological state among cancer caregivers by helping them develop a realistic, practical understanding and expectation of the treatment and expected outcomes.…”