Literature DB >> 25070880

Thank you for your lovely card: ethical considerations in responding to bereaved parents invited in error to participate in childhood cancer survivorship research.

Claire E Wakefield1, Jordana K McLoone, Leigh A Donovan, Richard J Cohn.   

Abstract

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.

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Year:  2015        PMID: 25070880     DOI: 10.1007/s11019-014-9587-4

Source DB:  PubMed          Journal:  Med Health Care Philos        ISSN: 1386-7423


  25 in total

1.  Accessing the community: gaining insider perspectives from the outside.

Authors:  Judith Sixsmith; Margaret Boneham; John E Goldring
Journal:  Qual Health Res       Date:  2003-04

2.  Collecting sensitive data: the impact on researchers.

Authors:  Barbara Johnson; Jill Macleod Clarke
Journal:  Qual Health Res       Date:  2003-03

3.  Ethical considerations in clinical research.

Authors:  Emily C Bellavance; H R Alexander
Journal:  Ann Surg Oncol       Date:  2012-02       Impact factor: 5.344

4.  Bereaved parents' perspectives on their needs.

Authors:  Norma Mammone D'Agostino; Deborah Berlin-Romalis; Vesna Jovcevska; Maru Barrera
Journal:  Palliat Support Care       Date:  2008-03

5.  Risk to researchers in qualitative research on sensitive topics: issues and strategies.

Authors:  Virginia Dickson-Swift; Erica L James; Sandra Kippen; Pranee Liamputtong
Journal:  Qual Health Res       Date:  2008-01

6.  Mindfulness meditation research: issues of participant screening, safety procedures, and researcher training.

Authors:  M Kathleen B Lustyk; Neharika Chawla; Roger S Nolan; G Alan Marlatt
Journal:  Adv Mind Body Med       Date:  2009

7.  Bereaved relatives' views about participating in cancer research.

Authors:  Jonathan Koffman; Irene J Higginson; Sue Hall; Julia Riley; Paul McCrone; Barbara Gomes
Journal:  Palliat Med       Date:  2011-05-23       Impact factor: 4.762

8.  Parental perspectives on hospital staff members' acts of kindness and commemoration after a child's death.

Authors:  Mary Ellen Macdonald; Stephen Liben; Franco A Carnevale; Janet E Rennick; Susan L Wolf; Donald Meloche; S Robin Cohen
Journal:  Pediatrics       Date:  2005-10       Impact factor: 7.124

9.  Deaths of pediatric patients: relevance to their medical home, an urban primary care clinic.

Authors:  Janet R Serwint; Marianne E Nellis
Journal:  Pediatrics       Date:  2005-01       Impact factor: 7.124

Review 10.  Distress and adjustment among adolescents and young adults with cancer: an empirical and conceptual review.

Authors:  Ursula M Sansom-Daly; Claire E Wakefield
Journal:  Transl Pediatr       Date:  2013-10
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