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Siblings' lived experiences of transitions between hospital and home in paediatric oncology: A qualitative study
Josefine Tang Rørbech1, Kamilla Tofting-Olesen1, Karin Enskär2
1Department of Paediatrics and Adolescent Medicine, Unit for Research and Development in Nursing for Children and Young People, Aarhus University Hospital, Aarhus N, Denmark.
Insights
Siblings of children with cancer often feel peripheral and uncertain during hospital-to-home transitions. Addressing their needs during these disruptions is crucial for their adjustment throughout the child
Area of Science:
- Pediatric Oncology
- Family Psychology
- Childhood Cancer Survivorship
Background:
- Childhood cancer significantly impacts family dynamics.
- Transitions between hospital and home environments create unique challenges for families.
- Siblings of children with cancer experience profound emotional and social changes.
Purpose of the Study:
- To explore the lived experiences of siblings of children with cancer during transitions between pediatric oncology centers and home.
- To understand how these transitions affect siblings' sense of self and family position.
Main Methods:
- Phenomenological-hermeneutic approach utilized.
- Semi-structured interviews and photo-elicitation conducted with eight siblings.
- Analysis guided by Paul Ricoeur's theory of interpretation.
Main Results:
- Siblings described grappling with a peripheral family position.
- Themes of potential family separation and uncertainty emerged.
- Adaptation to a changing siblingship due to illness was a significant finding.
- Siblings experienced heightened uncertainty, fear, and loneliness during transitions.
Conclusions:
- Siblings often feel distanced and peripheral despite striving for closeness.
- Frequent family disruptions necessitate prioritizing siblings' needs during transitions.
- Adequate support is essential for siblings' adjustment during a child's cancer journey.
Purpose:
Childhood cancer profoundly affects the entire family, with siblings experiencing significant changes. Transitions between paediatric oncology treatment centres and homes pose particular challenges, fragmenting family life and heightening uncertainty. This study aims to explore how siblings of children with cancer experience transitions between a paediatric oncology centre and home.
Method:
A phenomenological-hermeneutic approach was employed to capture the lived experiences of eight siblings of children with cancer. Semi-structured interviews, supported by photo-elicitation methods, were conducted in the siblings' homes. The analysis was guided by PaulRicoeur's theory of interpretation, which provided a philosophical framework for understanding the deeper meanings of siblings' narratives.
Results:
Three overarching themes on hospital and home transitions emerged: Grappling to find a new family position situated in the periphery, The risk of sudden family separation left with uncertainty and Adapting to a changing siblingship shaped by the illness. These findings highlight that siblings faced considerable demands to adjust and adapt to unpredictable family separations, representing particularly vulnerable periods, amplifying feelings of uncertainty, fear, and loneliness.
Conclusion:
This study provides insights into how siblings adjust to the frequent family disruptions caused by cancer treatment. While siblings strive for family closeness, they often feel distanced and placed in a peripheral role. Siblings' needs during transitions must be prioritized and addressed adequately to ensure their overall adjustment during a cancer course.
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