Thank you for your lovely card: ethical considerations in responding to bereaved parents invited in error to participate in childhood cancer survivorship research
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Research exploring the needs of families of childhood cancer survivors is critical to improving the experiences of future families faced by this disease. However, there are numerous challenges in conducting research with this unique population, including a relatively high mortality rate. In recognition that research with cancer survivors is a relational activity, this article presents a series of cases of parents bereaved by childhood cancer who unintentionally received invitations to participate in survivorship research. We explore six ethical considerations, and compare our experiences with that described previously. Our considerations include the sharing of confidential information with external parties to confirm past patients’ vital status and appropriate researcher responses to bereaved parents. The management of researchers’ emotional safety when working with illness populations and the fact that study invitations can elicit grief responses in non-bereaved families are discussed. To conclude, we argue for the benefits of inviting bereaved parents whose children died after treatment completion in survivorship research. Such parents’ early survivorship experiences will otherwise be systemically neglected. We argue that discussing complex cases can assist researchers to protect participants’ and researchers’ emotional well-being. We hope to contribute to the dearth of discussion about research operating procedures to address these issues.
KeywordsBereavement Childhood cancer Parents Qualitative research Research ethics Research methods Adverse events Incidents
We acknowledge the contribution of Alison Young (Researcher; Sydney Children’s Hospital). This study was funded by the Kids Cancer Alliance, which is supported by a translational research grant from the Cancer Institute of NSW. Claire Wakefield is supported by a Career Development Fellowship from the National Health and Medical Research Council of Australia (APP1067501) and an Early Career Development fellowship from the Cancer Institute of NSW (ID: 11/ECF/3-43). The Behavioural Sciences Unit is supported by the Kids with Cancer Foundation.
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