This study is a secondary analysis of data gathered during baseline data collection prior to a cognitive-psychosocial-respite intervention provided in a randomized controlled trial (RCT). Content analysis was used to identify themes in parents' responses to an open-ended item about their perceptions of the effects on siblings of having a brother or sister who has either cancer or cystic fibrosis (CF). Of 91 themes tallied in the cancer group (n = 29), 74.5% reflected negative manifestations of increased risk in siblings, 1.1% no risk; and 24.2%, positive outcomes. Of 53 themes tallied in the CF group (n = 15), the same three categories had 67.9 %, 0%, and 32.1%, respectively. Contemporary life in these families portrayed in parents' descriptions not only validate the rationale for the RCT done, but also suggest the need in ambulatory pediatrics for intervention research on these vulnerable populations.
Symptom monitoring by parents/caregivers of children with cancer and what the caregiver and child did to help alleviate symptoms during chemotherapy were studied. The Therapy-Related Symptom Checklist (TRSC) child version was administered to parents/caregivers of 11 children and adolescents (mean age, 10.4 years; SD, 6.1 years; range, 2-18 years; 45% were boys). The Karnofsky scale was completed by clinicians to rate the child's functional status. The TRSC child version and functional status scores were inversely related. All children experienced nausea; the most frequent symptoms reported were in TRSC subscales: fatigue, nausea, eating, fever, oropharynx, pain, and hair loss. Care strategies that helped were distraction, massage, mouth rinses, and vitamins; some reported that their child received medications for pain, nausea, and vomiting. Using complementary medicine categories, the care strategies were diet/nutrition/lifestyle change (eg, more high-fat, high-calorie foods; new foods; any food the child likes; and much sleep and rest); mind/body control (eg, play, video games, television, reading, activity puzzle, breathing exercises, relaxation methods, and prayer); manual healing method (massage and skin-to-skin contact); and biologic treatments (vitamins). The first 2 categories were the most used. Systematic assessment with a self-report checklist enables the provider to identify and prioritize (according to reported severity) those symptoms needing intervention.
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