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Understanding Parents’ Approaches to Care and Treatment of Children With Cancer When Standard Therapy Has Failed

Myra Bluebond-Langner, Jean Bello Belasco, Ann Goldman, Carmen Belasco

From Rutgers University, New Brunswick, NJ; Children's Hospital of Philadelphia, Philadelphia, PA; and the Great Ormond St Hospital for Children, London, United Kingdom

Address reprint requests to Myra Bluebond-Langner, PhD, Rutgers University, Department of Sociology, Anthropology and Criminal Justice, 405-407 Cooper St, Camden, NJ 08102; e-mail: bluebond{at}camden.rutgers.edu

Purpose: To examine US and United Kingdom (UK) parents’ approaches to care and treatment when standard therapy has failed and consider implications for clinical practice.

Methods: We conducted a prospective, ethnographic study of parents, patients, and staff, including participant-observation; open-ended, semistructured interviews; and review of medical records at a US and UK pediatric oncology center. Thirty-four children (n = 17 US, 17 UK), whose disease had recurred with less than 30% chance of cure, were enrolled between March 2001 and June 2002 and followed until death (n = 11 US, 14 UK) or close of study in December 2005 (n = 6 US, 3 UK).

Results: There were no major differences between parents’ approaches in the US and UK despite differences in health care systems, institutions, and parents’ religion or ethnicity. All parents continued to have or request meetings with the oncologist and investigative procedures. No parent initiated discontinuation of cancer- or symptom-directed interventions. In 28 of 34 cases (13 US, 15 UK), parents continued to pursue cancer-directed therapies; in 16 of 28 cases (seven US, nine UK), parents initiated inquires beyond what was offered.

Conclusion: Understanding parents’ behavior requires attention to the reason and emotion they bring to decision making and their children's care, their unique responsibilities as parents, and what they learn throughout the illness. Parents do not see cancer-directed therapy and symptom-directed care as mutually exclusive, alternative approaches. Parents will not be constrained by what the oncologist offers. Physicians and parents discuss and negotiate care and treatment throughout the illness. Our findings suggest developing integrative care models incorporating cancer-directed, symptom-directed, and supportive care throughout the illness; they are most consistent with parents’ approaches and advances in pediatric oncology.

Supported by grants from the Johnson & Johnson Family of Companies, Stanley T. Johnson Foundation, Olivia Hodson Foundation, National Endowment of the Humanities, REACH Fund of Great Ormond St Hospital, Fannie E. Rippel Foundation, and ELS Counselors.

Authors’ disclosures of potential conflicts of interest and author contributions are found at the end of this article.

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