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Experiences of parents with caring for their child after a cancer diagnosis
Maria Flury1, Ueli Caflisch, Andrea Ullmann-Bremi
1University Children's Hospital, Zurich, Switzerland. maria.flury@kispi.uzh.ch
Insights
Parents bringing a child with cancer home for the first time face new challenges. Enhanced preparation and support can improve the home care experience for these families.
Area of Science:
- Pediatric Oncology
- Family Caregiving
- Qualitative Health Research
Background:
- Cancer treatment increasingly shifts to home-based care for children and adolescents.
- Home care significantly impacts the entire family unit, including the child, siblings, and parents.
- Limited research exists on parents' initial experiences transitioning a newly diagnosed child with cancer to home care.
Purpose of the Study:
- To explore the experiences of parents during their child's first discharge home after a new cancer diagnosis.
- To identify challenges and needs of parents providing home care for a child with cancer.
- To inform strategies for optimizing discharge planning and support for these families.
Main Methods:
- Qualitative study design.
- Semi-structured interviews with parents of 10 children newly diagnosed with cancer.
- Data analyzed using content analysis methodology.
Main Results:
- Parents reported extensive preparation and significant new/changed tasks upon bringing their child home.
- The transition involved substantial emotional and practical consequences for parents.
- Parents' experiences highlighted a need for better-structured information and support systems.
Conclusions:
- Optimizing discharge planning requires individualized information, anticipatory guidance, and robust community support.
- Integrating healthcare professionals, district nurses, and peer support is crucial for successful home care.
- Improved hospital-based preparation can enhance parental confidence and competence in managing childhood cancer at home.
Abstract:
Children and adolescents with cancer are increasingly treated and cared for at home; hospital stays are reduced to a minimum. Taking care of a sick child at home has an impact on the entire family: the sick child, the siblings, and the parents. This qualitative study examines the experiences of parents taking their child home for the first time after the diagnosis. Parents of 10 children newly diagnosed with cancer were interviewed twice around the time of the first discharge; data were analyzed using content analysis methodology. Findings illustrated parents' preparation of and experiences around their child's first discharge, the huge amount of new and changed tasks parents have to fulfill at home when caring for their child with cancer, and consequences for the parents. By providing individualized information and instruction, by having parents anticipate potential problems and solutions, and by describing available community support and integrating district nurses as well as other parents with the same experiences more frequently, health care professionals in the hospital can optimize discharge planning for these parents.
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