Parent perspectives on the educational barriers and unmet needs of children with cancer.

Childhood cancer challenges academic success and school engagement, yet little research has described these hardships. This study documented parental perspectives of the educational barriers and unmet needs of youth treated for cancer (n = 102). Treatment-related physical sequelae were noted as common problems interfering with school attendance and engagement. One-fourth of parents reported worse academic performance since diagnosis; however, many never had their child evaluated (63.3%) or enacted formalized educational accommodations (55%). Findings reflect educational challenges across the continuum of cancer care and survivorship, and highlight the importance of education of school staff on both acute and long-term effects of cancer treatment.

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

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.