81 Research Summary: The Caregiving Experience for Children Diagnosed with Cancer: A Secondary Analysis

Faculty Mentor: Lauri Linder (Nursing, University of Utah)

Each year thousands of children are diagnosed with cancer. Many of these children will have support systems that are also greatly impacted by their diagnosis. These support systems are oftentimes the children’s parents. Parents will also take on an informal caregiving role, doubling as both their parent and their medical advocate. Studying the parent caregiving perspective can provide valuable insights for the professional health care team and their practice. The purpose of this project was to characterize the symptom management and caregiving experiences of parents of school-aged children diagnosed with cancer. The project was a secondary analysis of the work conducted by Dr. Lauri Linder at Primary Children’s Hospital in Salt Lake City, Utah. Her work included conducting interviews with 21 parents during the content validity phase of developing two self-report instruments addressing parents’ management of their child’s symptoms. Out of 21 parents, 20 parent interview transcripts and written responses to content review surveys were included in this data analysis. Dr. Lauri Linder and Sofia Flowers coded 101 extracted excerpts from this larger data set using qualitative content analysis procedures to identify aspects of the parent caregiving experience. After coding the data, 9 categories were found and included: medication management, access to information and resources, access to person-based support, experience of managing and adapting, emphasis on the child response, emotional and cognitive responses, discerning and managing psychosocial symptoms, developing individual strategies, and uncertainty/lack of control. This secondary analysis can provide valuable insights for professional staff to enhance their practice to better attend to all aspects of patient care. This information can enhance clinical communication, aid in access to both informational and psychosocial resources, understanding of the emotional toll of the parent experience, and the differentiation between types of symptoms.