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Parental Involvement and Family-Centered Care in the Diagnostic and Treatment Phases of Childhood Cancer: Results from a Qualitative Study

Department of Family Social Science at the University of Minnesota in St. Paul

Joän M. Patterson, PhD

Maternal and Child Health Program, Division of Epidemiology, School of Public Health, at the University of Minnesota in Minneapolis

James G. Gurney, PhD

University of Minnesota, Division of Pediatric Epidemiology & Clinical Research, 420 Delarware St. SE, Mayo Mail Code 715, Minneapolis MN 55455

Few research studies have addressed the ways parents participate in their childs medical care, particularly in relation to the cancer experience. The purpose of this study was to explore parents descriptions of their participation in medical care for their children with cancer. For this study, seven focus groups were conducted with 45 parents of 26 children who had completed cancer treatment at least one year prior, and who were still alive. Data were coded using thematic analysis procedures. It was found that parents emphasized their role as advocates during the diagnosis and treatment phases, by informing themselves about their childrens medical conditions, making medical care decisions, limiting the actions of medical professionals, and affirming and supporting medical professionals. These results emphasize the need to employ a family-centered approach in cancer care medical settings, by fostering and supporting the active inclusion of parents in their child’s treatment and management.

Key Words: neoplasm • children • psychosocial • epidemiology

Journal of Pediatric Oncology Nursing, Vol. 20, No. 6, 301-313 (2003)
DOI: 10.1177/1043454203254984


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