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Parent-Child Communication About Cancer

Abstract

Over 12,400 children age 19 and under are diagnosed with cancer in the U.S. each year, and 2,300 die annually from the disease (Ries et. al., 2004). One of the most difficult questions facing parents of children with cancer is, "How do I talk with my child about cancer?" Further, parents of children with a poor prognosis struggle with the question, "How do I talk with my child about the possibility of death?" Parents often turn to healthcare providers for guidance, but ultimately parents must determine the type and amount of information they share with their child about the disease, treatment, and prognosis. Further, parents must decide how to balance this information in the context of managing their own and their child´s fear and worries.

Although the National Cancer Institute (NCI) has recommended that parents communicate openly and honestly about cancer, little research has addressed this issue in pediatric oncology. Moreover, no studies have used direct observation of parents and children as they discuss the diagnosis or examined how communication is associated with coping and adjustment over time. This application will use questionnaires and direct observation to assess parent-child communication about cancer and determine how the content and process of communication are associated with family outcomes. Over 560 families of children newly diagnosed with cancer or a recurrence will be recruited from two sites to complete questionnaires about coping, communication and adjustment 1 month after the child´s diagnosis. Approximately 224 families are expected to complete an observation of family communication 3 months after the child´s diagnosis, and follow-up questionnaires will be completed 12 months after diagnosis. We will pursue 3 aims 1) To use a standardized observation protocol to describe the content and process of parent-child communication about cancer and examine differences in communication as a function of medical (for example, diagnosis, prognosis), child (for instance, age, gender), and family (for example, history of loss, family environment) factors; 2) To examine associations between communication and distress in parents and children; 3) To examine associations between communication and children´s subsequent coping and emotional distress.

The study has potentially significant public health implications, as findings from this study will enable healthcare professionals to better guide parents on how to communicate with their child in order to optimize their child´s adjustment and care by providing guidelines about the content and quantity of information to share.

The long-term goal of the proposed research is to provide health care professionals with evidence based recommendations for facilitating parent-child communication regarding childhood cancer and to decrease children´s and parents´ psychological distress