Symptom experiences in the illness trajectory of children with cancer and their families

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Woodgate, Roberta
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Many childhood malignancies once regarded as fatal have become curable with the initiation of multimodal therapy. However, such therapy is not without its costs. Aggressive treatment is associated with many adverse consequences for both children with cancer and their families. Uncontrolled symptoms can have a negative impact on families, leading to increased suffering and impaired quality of life. Knowledge about how the childhood cancer-symptom course is experienced by childr n and their families is required to improve symptom management. Guided by the philosophy of interpretive interactionism, an interpretive research design framed within the qualitative paradigm as undertaken to explore and describe the childhood cancer-symptom course experienced by children and their families. Such an approach was required to interpret and understand the personal meanings and responses that the children and families constructed around living day-to-day with symptoms throughout the childhood cancer trajectory. Tenets from the following two philosophical approaches of interpretive work shaped the research process: the grounded theory research method and illness narratives. Data analysis led to the development of two substantive theories. The first theory, Keeping the Spirit Alive: The Spirit Within, describes a developing model that depicts the children's and families' overall experience with cancer. From the telling of their stories, the first model, Keeping the Spirit Alive, evolved. In this model, the core category of "getting through all the rough spots" was identified as the basic psychosocial phenomenon or problem experienced by children and their families. The second core category of the model, "keeping the spirit alive," emerged as the basic psychosocial process. The "keeping the spirit alive" process referred to the children's and families' ability to not let all the roughness of the cancer-symptom trajectory get the better of them. The second theory, Children's and Families' Lived Experience of Childhood Cancer-Symptoms, depicts the lived experience of cancer in relation to the changing personal meanings that children and families assigned to the cancer-symptom experiences. Two core categories form the foundation of the second substantive theory: (1) Personal meanings of the cancer-symptom experiences; and (2) Passage through the transition periods. (Abstract shortened by UMI.)