JOPHON NCPD (2022 Sept/Oct) - The Experience of Children With Neuroblastoma and Their Parents During Single-Room Isolation for I-Metaiodobenzylguanidine Therapy: A Qualitative Descriptive Study-The Experience of Children With Neuroblastoma and Their Parents During Single-Room Isolation for 131I-Metaiodobenzylguanidine Therapy: A Qualitative Descriptive Study

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

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This qualitative descriptive study explored how children with neuroblastoma and their parents experience the required single-room isolation during ^131I-metaiodobenzylguanidine (^131I-MIBG) radiotherapy, when radiation precautions limit visitors, caregiver physical contact, and nursing time in the room. Researchers interviewed 10 pediatric oncology nurses, nine parents (most completing two interviews), and five children, then analyzed transcripts using conventional content analysis.<br /><br />Children’s experiences ranged from “fine” to highly negative, with many describing boredom, loneliness, and feeling “stuck,” while parents and nurses more often characterized the overall experience as acceptable or even positive. Notably, in some parent–child pairs, parents believed the child did well while the child later described the experience as “terrible,” highlighting potential gaps in recognizing children’s distress.<br /><br />Emotional stress was common in children, especially anxiety and fear, often related to separation, unfamiliar procedures, and medications. The indwelling urinary catheter—standard because most radioactivity is excreted in urine—was a major source of distress and sometimes pain (including bladder spasms). Physical symptoms such as nausea/vomiting, pain/discomfort, and fatigue were frequently reported by parents and children and were usually manageable with interventions.<br /><br />Most families felt the child was adequately prepared through developmentally appropriate explanations and planning, though some children did not fully understand aspects like catheter duration. Coping was strongly supported by audiovisual technology (monitors, walkie-talkies, tablets/video chat) and entertainment (games, movies), plus supportive staff interactions and highly engaged parental presence within restrictions.<br /><br />Parents commonly felt worried and overwhelmed before admission but often found the experience “not as bad” as expected and easier over time as routines developed. Support from family, social media communities, and hospital staff reduced isolation. The authors conclude that additional coping and emotional-support interventions, improved connection-enhancing technology/room design, and research on long-term psychological outcomes are needed.

Keywords

neuroblastoma

131I-MIBG radiotherapy

pediatric oncology

single-room isolation

radiation precautions

child distress and anxiety

parent-child perception gap

indwelling urinary catheter

coping strategies and technology

qualitative content analysis