Understanding parents' approaches to care and treatment of children with cancer when standard therapy has failed

Understanding parents' approaches to care and treatment of children with cancer when standard therapy has failed

Bluebond-Langner M; Belasco JB; Goldman A; Belasco C

Journal Of Clinical Oncology

2007

Child; Humans; United States; Terminally Ill; Great Britain; Adult; Prospective Studies; adolescent; Preschool; Caregivers/psychology; decision making; infant; Parents/psychology; Neoplasms/therapy

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.

2007

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Journal Article

Backlog