Through Their Words

Abstract

An increased intensity of inpatient treatment, hospital-based routines, and separation from the familiar home environment may collectively increase the burden of the pediatric cancer experience. This study explored children and adolescents’ perceived sources of bother related to hospitalization using two questions: (1) What bothered you the most about the hospital or hospital environment? and (2) What do you think could improve the hospital or hospital environment? Fifty children and adolescents (mean age 12.6 years) responded to these questions during each shift of a 3-day/3-night data collection period. Responses were analyzed using content analysis and chi-square analyses. Themes related to sources of bother included (1) “nothing/don’t know,” (2) “treatment and its consequences,” (3) “isolation and loneliness,” (4) “imposed bother,” (5) “negative environment,” and (6) “staff behaviors.” Themes related to improving the hospital environment included (1) “nothing/don’t know,” (2) “normalizing activities,” (3) “quality of the hospital environment,” (4) “decrease burden of cancer and its treatment,” and (5) “patient care issues.” Participants’ responses to these questions provide a foundation for actionable change to alleviate the burden associated with hospitalization.