A different perspective to approaching cancer symptoms in children

Abstract

A sound and comprehensive knowledge base about symptoms in children experiencing cancer is necessary if health care professionals hope to effectively manage their symptoms. To date, there is still much to be discovered about how children with cancer and their families experience childhood cancer symptoms. Accordingly, a longitudinal qualitative study was undertaken between July 1998 and December 2000 to explore and describe the childhood cancer symptom course from the perspectives of children and their families. The study was conducted in three settings: the participants' homes and both an inpatient and outpatient pediatric cancer unit located in Western Canada. Thirty-nine children (4 1/2- to 18-year-old males and females) with mixed cancer diagnoses and their families (parents and siblings) participated in the study. The majority of the children were diagnosed with either leukemia or lymphoma (72%), had siblings (87%), and two parents (87.2%), and remained in remission at the completion of the study (90%). All the children received chemotherapy either alone (56%) or in combination with surgery (18%), radiation (5%), radiation and bone marrow transplant (8%), radiation and surgery (10%), and surgery, radiation, and bone marrow transplant (3%). Multiple methods of data collection were used including open-ended formal interviewing and participant observation. Interview and participant observation data were analyzed by the constant comparative method of data analysis. The creation of illness narratives added to the understanding of children's and families' experiences. In addition to providing a description of how the symptoms affected children's and families' daily living, findings related to how to health professionals can better understand and approach children's cancer symptoms emerged. When families, physicians, nurses, and other health professionals approached children's symptoms solely as side effects (e.g., nausea) or singular physical and psychological states, children provided minimal description of what they were actually experiencing. However, a greater understanding was achieved when the symptoms were approached as dynamic multidimensional experiences that occurred within a particular context. Children experienced symptoms as feeling states. Critical to children's feeling states were the meanings that children and their families assigned to the symptoms. Viewing cancer symptoms in the context of assigned meanings has implications for how symptoms are assessed and managed. The need to develop a children's symptom assessment tool based on assigned meanings is recommended.