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Cancer disclosure-account from a pediatric oncology ward in Egypt
Hanan El Malla1,2, Gunnar Steineck1,3, Nathalie Ylitalo Helm1,4
1Division of Clinical Cancer Epidemiology, Department of Oncology, Sahlgrenska University Hospital, Gothenburg, Sweden.
Insights
Pediatric cancer disclosure is common, but children are often absent during diagnosis discussions. Improved communication and patient autonomy are crucial for better quality of life and treatment adherence.
Area of Science:
- Pediatric Oncology
- Clinical Communication
- Patient-Centered Care
Background:
- Informing children about their cancer diagnosis and treatment is vital for their quality of life and medication adherence.
- Effective communication strategies are essential in pediatric cancer care.
Purpose of the Study:
- To investigate the practices and challenges of cancer diagnosis disclosure to children with cancer.
- To assess the extent to which children are involved in discussions about their diagnosis and treatment plans.
Main Methods:
- A study was conducted over seven months in 2008 at the Children's Cancer Hospital Egypt.
- Two questionnaires were administered to 304 parents of children diagnosed with cancer.
Main Results:
- Nearly three-quarters (72%) of parents reported their child's cancer diagnosis was communicated by a physician.
- In only 39% of these cases were the children present during the disclosure conversation.
- The majority of children involved were between 5 and 18 years old.
Conclusions:
- While cancer disclosure occurs, children are frequently excluded from these crucial conversations.
- Physicians' communication methods may hinder comprehension for both parents and children.
- There is a need for improved disease disclosure practices, enhanced patient-provider communication, and greater consideration of patient autonomy.
Objective:
Informing the child about his/her diagnosis and treatment plan is essential; research has shown that it is related to the patient's quality of life and adherence to medication.
Methods:
For 7 months during 2008 (February to September), 2 study-specific questionnaires were constructed and administered to 304 parents of children diagnosed with cancer at the Children's Cancer Hospital Egypt.
Results:
Among the 313 eligible parents of children diagnosed with cancer, 304 (97%) answered the first questionnaire and 281 (92%) answered the second questionnaire. We found that nearly three-quarters (72%) of the parents had their child's cancer diagnosis communicated by the physician. Among the 72%, the rate of the children present with the parent or parents during the disease disclosure conversation was 39% (n = 85/219). The majority of the children were in the age group 5-18 years (55%).
Conclusions:
Our findings indicate that cancer disclosure at the Children's Cancer Hospital is to a certain degree common; yet even when disclosure does take place, it is mainly in the absence of the child. Moreover, the information provided during the conversation may not be fully comprehended by the parent or the child because of the physician's misleading use of terms when disclosing the disease. Therefore, better practice should be developed for disease disclosure, and proper communication should be established between the patients and the provider; patient autonomy should also have an influence in the clinical practice.
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