Pediatric Oncology Nurses' Experiences with Prognosis-Related Communication
Hearing that your child has cancer is devastating and can be overwhelming for parents. Doctors and nurses who care for children with cancer are responsible for talking with parents about diagnoses and the associated prognoses. Prognostic conversations generally include information about whether or not the child can be cured of the cancer, how long the child is expected to live, and the kind of life the child is expected to have. Doctors are usually the first ones to start these conversations, but parents may not always remember or comprehend what was said. Parents may then turn to the nurse to help them make sense of the information that was presented to them.
Adult oncology nurses report that if they were not present for the initial conversations by the doctor, they struggle to answer patient and family questions openly and honestly. Limited or impaired communication can then strain the nurse-patient relationship, resulting in moral distress for the nurse and a potential compromise in the nurse's ability to care for the patient. How pediatric oncology nurses react in this situation is unknown. Further, the role of the pediatric oncology nurse in the process of prognosis-related communication has not been clearly described.
Thus, a nationwide survey of pediatric oncology nurses with follow-up focus groups will be performed to examine nurses' perceptions and experiences of prognosis-related communication with parents of children with cancer. Results of the study will aid in the development of interventions aimed at improving communication with parents of children with cancer.
Project Update (Feb. 2017)
Little has been documented about how nurses feel about participating in these conversations or answering prognosis-related questions. To gain better understanding, a national online survey of all nurse members of the Association of Pediatric Hematology/Oncology Nurses was conducted. Over 300 nurses responded on this important topic. Nurses indicated that they believe sharing prognostic information with parents of child with cancer is important, particularly to aid in treatment-related decision making. Nurses believe that it is the physician's responsibility to initiate such discussions, but that nurses can play a role in ongoing discussions about prognosis. That said, nurses are sometimes put in a challenging position when they are unsure of what the physician has shared with the parents. In this situation, they are not always clear about what they should say in response to parent questions and how to best support them. A limited number of nurses have actually had training on how to discuss these delicate topics with parents, but the more training nurses had, the better their experiences with prognosis-related communcation. Nurses who work more collaboratively with their physician colleagues also had better experiences and reported an ability to provide a higher quality of care. They also experienced less distress in their nursing practice. Ongoing dialogue among physicians, nurses, parents and patients regarding the nurse's role in the process is essential. Also specialized training that brings nurses and physicians together to learn how to partner to deliver such information has great potential to improve the process and subsequently the quality of care provided.
"As a pediatric oncology nurse, I am quite familiar with Alex’s Lemonade Stand Foundation and its mission. I have always been impressed and inspired by the Foundation and its contribution to childhood cancer research, so to receive funding from the Foundation to support my research is quite an honor. This grant will enable me to explore and describe nurses’ experiences of talking with parents of children with cancer about their child’s prognosis. These conversations can be quite difficult, but are essential. It is critical that these conversations are informative, truthful, and supportive to parents. How such information is communicated can provide parents with hope, which has been found to support them throughout their child’s cancer journey. Thus, having an understanding of how nurses perceive and experience this process will provide insight into how to improve communication and ensure positive outcomes for patients, their patients, and the providers who care for them." -Amy Newman