Exploring concerns of children with cancer

Background: Aggressive treatment protocols in pediatric oncology have major effects on the lives of children with cancer. The effects of lifestyle changes such as hospitalization and home schooling on quality of life have not been investigated. This study explores lifestyle effects of cancer therapy on the quality of life of children with cancer. The goals of this study were to identify important quality-of-life issues from the perspectives of children with cancer and to identify how they think their experience with cancer treatment could be improved. Materials and methods: Pediatric oncology patients age 5-21 were interviewed individually. Sample questions included, "Ever since you got sick, what has bothered you the most?" and "How has having this illness affected your life?" Responses were analyzed using standard qualitative techniques. Results: Thirty-one patients were interviewed in depth. Four major themes emerged including (1) loneliness and isolation: the loss of a normal childhood, (2) decreased pleasure from food, (3) physical discomfort and disability, and (4) emotional responses to cancer, specifically anger and fear. Their suggestions for improvement included better-tasting food, more comfortable hospital décor, and social activities with children their own age. Conclusions: Children cited concerns regarding pleasures taken away as well as pain inflicted due to cancer treatment. In addition to traditionally mentioned side effects, children complained of difficulty enjoying food and restricted social activity. To improve the quality of life of children with cancer, healthcare providers should focus on potentially modifiable variables including food-related pleasure, hospital aesthetics, and social activity.