Authors: Sofia Denise Flowers
Mentors: Lauri Linder
Insitution: University of Utah
Background and Purpose: In the year 2023, roughly 9,000 children will be diagnosed with cancer each year in the United States. Dealing with a potentially fatal diagnosis is already difficult for many grown adults, let alone a young child. The aim of this project is to describe caregiving experiences of parents and children with cancer as related through feedback comments within written and oral feedback to proposed items to measure self-efficacy for managing their child’s symptoms and behaviors used to manage their child’s symptoms.
Methods: This project involved a secondary analysis of qualitative data from 21 parents (19 mothers; mean age 38 years) of school-age children with cancer who participated in a study to establish the content validity of instruments to measure aspects of symptom management. Data consisted of interview transcripts and free responses to the content review surveys. The data were then uploaded to Dedoose. My mentor and I worked independently to identify statements pertaining to parents’ experiences in managing their child’s symptoms and responding to the child’s cancer diagnosis. We then met together to reconcile content and then organize parents’ statements into categories and subcategories.
Results: 101 excerpts were extracted from the transcripts and included for the secondary analysis. Excerpts were grouped into four main categories: informational resources, social support, emotional support, and medication management Within these four main categories, subthemes of professional staff support, managing child attitude and mood changes, and balancing between being a parent and their child’s medical advocate were present.
Conclusion: The insights gained from this project can guide the information healthcare providers need to provide better care to the child and additional support to parents. This can allow professional staff to get a stronger understanding of not just the family’s medical needs but their informational, social, and emotional needs as well.