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Distressing events for children and adolescents with cancer: child, parent, and nurse perceptions
Mariann Hedström1, Kristina Haglund, Inger Skolin
1Department of Public Health and Caring Sciences, Section of Caring Sciences, Uppsala University, Uppsala, Sweden.
Insights
Pediatric cancer patients experience distressing events related to physical pain and emotional challenges like confinement and worry. Distress types vary by age, with younger children experiencing more physical distress and older children reporting more emotional distress.
Area of Science:
- Pediatric Oncology
- Child Psychology
- Patient Experience
Background:
- Childhood cancer presents unique challenges impacting physical and emotional well-being.
- Understanding distressing events is crucial for improving supportive care in pediatric oncology.
Purpose of the Study:
- To identify and categorize distressing events experienced by children with cancer.
- To analyze age-specific differences in physical and emotional distress.
Main Methods:
- Interviews conducted with 121 pediatric cancer patients, their parents, and nurses.
- Content analysis used to categorize distressing events into physical and emotional dimensions.
- Data analyzed across different age groups (0-3, 4-7, 8-12, >=13 years).
Main Results:
- Physical distress commonly reported: pain from procedures, nausea, fatigue. Pain was most frequent for ages 0-12, nausea for >=13.
- Emotional distress commonly reported: confinement, alienation, worry. Specific concerns included confinement (0-3), alienation (4-7), worry about death (8-12), and changed appearance (>=13).
- Younger children (0-7) and adolescents (>=13) reported more physical distress, while 8-12 year olds reported more emotional distress.
Conclusions:
- Distressing events in pediatric cancer are multifaceted, encompassing physical and emotional aspects.
- Age-specific interventions are needed to address the varying needs of children with cancer.
- Addressing pain, nausea, confinement, and appearance changes is vital for improving quality of life.
Abstract:
Distressing events for children with cancer (N = 121), 0 to 19 years of age, were investigated. Data were gathered through interviews with 50 children, 65 parents, and 118 nurses. Each participant was asked: "Has there been any especially distressing event for you/your child/the child with regard to disease and treatment?" Data were analyzed by content analysis. The categories that emerged from the analysis were grouped into a physical and an emotional dimension. The most frequently mentioned aspects of distress referred to the physical dimension: pain resulting from diagnostic procedures and treatments, nausea, and fatigue. The most frequently mentioned physical aspect of distress was, for children 0 to 3, 4 to 7, and 8 to 12 years of age, pain resulting from diagnostic procedures and treatments, and for children > or =13 years of age, nausea. The most frequently mentioned aspects of distress referred to the emotional dimension were categorized as confinement, feeling of alienation, and worry before medical procedures. The most frequently mentioned emotional aspect of distress was, for children 0 to 3 years of age, confinement; 4 to 7 years of age, feeling of alienation; 8 to 12 years of age, worry about death; and > or =13 years of age, changed appearance. For children 0 to 3, 4 to 7, and > or =13 years of age, aspects of distress of a physical character were mentioned most frequently. For children 8 to 12 years of age, aspects of distress of an emotional character were mentioned most frequently.
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