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The Experience of Children With Neuroblastoma and Their Parents During Single-Room Isolation for
Cynthia M LaFond1,2, Alyssa Yost3,4, Kelly Lankin5
1Professional Nursing Practice, 2468Rush University Medical Center, Chicago, IL, USA.
Insights
Children undergoing radioactive iodine therapy for neuroblastoma experience isolation, with emotional distress being common. Support interventions and improved room design can enhance their coping and connection during treatment.
Area of Science:
- Pediatric Oncology
- Nuclear Medicine
- Qualitative Research
Background:
- Neuroblastoma treatment with 131I-metaiodobenzylguanidine (131I-MIBG) necessitates patient isolation due to radioactivity.
- Limited research exists on the lived experiences of children and parents during this isolation period.
- Current protocols restrict physical contact between caregivers and children undergoing therapy.
Purpose of the Study:
- To explore the experiences of children with neuroblastoma and their parents during single-room isolation for 131I-MIBG therapy.
- To identify challenges and coping mechanisms during the isolation period.
- To inform potential improvements in supportive care and environmental design.
Main Methods:
- Qualitative descriptive study design.
- Interviews conducted with ten nurses, nine parents, and five children.
- Conventional content analysis applied to interview transcripts.
Main Results:
- Children reported varied experiences, common emotional stress, manageable symptoms, and adequate preparation for isolation.
- Audiovisual technology and entertainment were beneficial for children.
- Parents expressed initial concern but found the experience manageable over time, feeling supported.
- Indwelling urinary catheters were identified as a source of stress and pain for some children.
Conclusions:
- Children and parents require additional coping support interventions to mitigate emotional distress during isolation.
- Enhancing connection through technology and room design is crucial for improving patient and family well-being.
- Further research is needed on the long-term psychological impact of this isolation experience.
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.

