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When my four-year-old got cancer: a retrospective on resilience in a paediatric oncology ward
1Health Behavior and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.
The author presents an interpersonal experience between the author and her son during childhood cancer treatment and care, illustrating the complex relationship between childhood cancer and the term 'resilience'. During treatment and care, nurses used the term 'resilience' in an apparent attempt to reassure her. However, the author found that the concept distanced her from her and her son's experience, creating emotional distress for him. She discovered that the everyday use of resilience, devoid of its research connotations, has the potential to create barriers in understanding these experiences for the patient and the caregiver. For example, this everyday use did not account for the relationship that resilience has with growth. It is not just important in terms of diagnosing a tumour, it is also important for supporting the agency of a child and the cultivation of trustworthiness. A focus on growth supports the notion of an "active resilience," a process informed by research literature to help medical staff and families develop the child patient's capability for growing into resilience throughout the survivorship experience. By neglecting this relationship with growth, resilience was found to silence the agency and voice of the author's child which added to the difficulty that she had in providing care. As more children survive cancer, a meaningful use of the term resilience can support their recovery from the adversities of treatment and a life of adverse outcomes. The ethnographic detail provides the context necessary for contributing to and unpacking the normative use of the term resilience in paediatric oncology.
The author presents an interpersonal experience between the author and her son during childhood cancer treatment and care, illustrating the complex relationship between childhood cancer and the term 'resilience'. During treatment and care, nurses used the term 'resilience' in an apparent attempt to reassure her. However, the author found that the concept distanced her from her and her son's experience, creating emotional distress for him. She discovered that the everyday use of resilience, devoid of its research connotations, has the potential to create barriers in understanding these experiences for the patient and the caregiver. For example, this everyday use did not account for the relationship that resilience has with growth. It is not just important in terms of diagnosing a tumour, it is also important for supporting the agency of a child and the cultivation of trustworthiness. A focus on growth supports the notion of an "active resilience," a process informed by research literature to help medical staff and families develop the child patient's capability for growing into resilience throughout the survivorship experience. By neglecting this relationship with growth, resilience was found to silence the agency and voice of the author's child which added to the difficulty that she had in providing care. As more children survive cancer, a meaningful use of the term resilience can support their recovery from the adversities of treatment and a life of adverse outcomes. The ethnographic detail provides the context necessary for contributing to and unpacking the normative use of the term resilience in paediatric oncology.
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