Nursing
91 Pediatric Oncology Patient’s Conceptualization of Cancer Symptoms
Minahil Usman and Lauri Linder (Nursing)
Faculty Mentor: Lauri Linder (Nursing, University of Utah)
Background
According to American Childhood Cancer Organization [1], approximately 1 in 285 children in the U.S. are diagnosed with cancer before their 20th birthday. But treatments often involve intense and difficult procedures which can make children feel distressed while also disrupting their quality of life [2]. Their ability to participate in daily activities becomes severely restricted and relationships with parents and siblings are also negatively affected as a result of the short- and long-term symptoms experienced [3].
Learning about how children perceive and/or describe their symptoms is challenging because they often become frustrated when asked to rate symptoms on a self-assessment scale or to tell individuals around them who can’t truly appreciate or understand their suffering. Most children prefer to deal with their feelings on their own. However, it is important to discover how children feel and think about these symptoms because it can aid nurses, healthcare providers, and families to provide a more comprehensive, individualized, and sensitive approach to care. And because suffering with cancer is a shared experience, children’s overall conceptualization of symptoms often constituted a multidimensional phenomenon of multiple symptoms, social interactions, and various environments. Therefore, to effectively track the course of the disease, it’s vital to explore and recognize relationships on the intrapersonal, interpersonal, and transpersonal levels as all these impact the children’s experiences with symptoms [2].
To address this problem, I plan to embark on a project where I will be reviewing transcripts of qualitative cognitive interviews conducted by Dr. Linder with child cancer patients as part of her KIDS-SM study on the online software program, Dedoose. I am hoping that utilizing excerpts of the transcripts as my primary source of analysis will help me gain a sense of the whole picture regarding children’s experiences with the disease (i.e., how they describe aspects of symptoms). And then I can use a content analysis via an inductive qualitative approach to identify commonalities among the excerpts and ultimately understand child cancer patient’s conceptualization of symptoms.
Aims
- Describe how children with cancer between the ages of 6 to 12 characterize their symptoms and expressions they use in relation to these symptoms.
Conclusion
A comprehensive approach to assessing symptoms in clinical settings is necessary to not only improve symptom management and quality of life for pediatric oncology patients throughout the trajectory of their disease, but also to understand illness-related distress and address the changing nature of symptoms daily [3]. Some children experience symptoms – what they often refer to as ‘feeling states’ – so often that it becomes their ‘new normal.’ However, these ‘feeling states’ can’t be quantified on self-assessment scales; rather, we need to consider adopting a multi-faceted approach that studies symptoms, social interactions, and environments altogether to be able to fully capture the subjectivity of the suffering and experiences children attach to their symptoms [2]. And this is exactly what I hope to accomplish through my research project.
Acknowledgments
This research was funded by the Huntsman Cancer Institute Cancer Control and Population Sciences Pilot Grant and the University of Utah Presidential Scholar Award.
References
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- US Childhood Cancer Statistics. (n.d.). ACCO. Retrieved September 30, 2022, from
https://www.acco.org/us-childhood-cancer-statistics/ - Woodgate, R. L. (2008). Feeling states: a new approach to understanding how children and adolescents with cancer experience symptoms. Cancer nursing, 31(3), 229–238. https://doi.org/10.1097/01.NCC.0000305731.95839.ca
- Linder, L. A., & Hooke, M. C. (2019). Symptoms in Children Receiving Treatment for Cancer-Part II: Pain, Sadness, and Symptom Clusters. Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses, 36(4), 262–279. https://doi.org/10.1177/1043454219849578
- US Childhood Cancer Statistics. (n.d.). ACCO. Retrieved September 30, 2022, from