The Experience of Children With Neuroblastoma and Their Parents During Single-Room Isolation for 131 I-Metaiodobenzylguanidine Therapy: A Qualitative Descriptive Study

Abstract

Background: Administration of ¹³¹I-metaiodobenzylguanidine (¹³¹I-MIBG) for neuroblastoma requires hospitalization in single-room isolation and limits caregiver physical contact due to the child's radioactive burden. Though used for decades, there is a dearth of research on the experiences of children and their parents while isolated. Methods: This qualitative descriptive study evaluated the experience of children with neuroblastoma undergoing single-room isolation for ¹³¹I-MIBG therapy and their parents. Ten nurses, nine parents, and five children were interviewed; transcripts were analyzed applying a conventional content analysis approach. Results: Child themes included overall experiences ranging from positive to negative; emotional stress was common; symptoms were common but mostly managed; the children were adequately prepared for isolation; and audiovisual technology and entertainment helped. The indwelling urinary catheter was a source of emotional stress and/or pain for several children. Parent themes included I thought it was going to be a lot worse; it gets better with time; feeling concerned and overwhelmed; prepared as much as you can be; and you feel like you’re not alone. Discussion: Findings suggest that children and parents would benefit from additional coping support interventions to address emotional distress. Efforts should be made to identify other sources of technology or room designs that can maximize the child's sense of connection with parents and healthcare professionals. Additional research is needed to examine the impact of this isolation experience on the long-term psychological outcomes of children and parents.