| Description |
Childhood cancer is the leading cause of death from disease in 1- to 14-year-olds with greater incidence among children 6 and younger. Young children are often excluded from studies because of their developmental abilities. Since these children primarily receive outpatient treatment, their parents are the ones managing symptoms. The purpose of this dissertation was to describe the physical symptoms of children 6 and younger and to compare two symptom diaries. Specific aims were to (a) describe the frequency and severity of physical symptoms as reported by parents; (b) compare parents' perceived usefulness of an electronic symptom diary to a paper-and-pencil symptom diary, and (c) explore the usability of an electronic diary to report symptoms. This study used a mixed-methods, crossover design. Participants were 20 parents of children with cancer and their children. Parents used two types of symptom diaries to report symptoms. Symptom data were collected over two, 7-day periods spanning three ambulatory visits. At visits 2 and 3, parents completed two questionnaires along with a short interview. Descriptive statistics were used to summarize symptoms and Wilcoxon signed-ranks tests were used to compare questionnaire responses. Qualitative data were analyzed using content analysis. Nineteen (95%) parents reported at least one daily symptom and nine (45%) reported at least 1 day of a moderate/severe symptom. Fatigue was the most commonly iv reported symptom (56.8%) followed by nausea (51.4%) and lack of appetite (37.8%). The symptom most frequently reported as moderate/severe was fatigue (17.5%). Parents most frequently used their child's activity level and verbal cues to determine symptom presence. Parents' satisfaction (z = -3.454, p = .001) and parents' perceived usefulness (z = -3.061, p = .002) of the electronic diary was greater than that of the paper. This study provides insight into how parents perceived symptoms and their associated characteristics in young children. Young children with cancer experience persistent symptoms, sometimes of moderate or greater severity even in the ambulatory setting. Parents preferred the electronic diary because of its features, tracking capabilities, and familiarity. This study fills a gap in the existing body of literature by exploring symptoms in this population. |
