Clinical research has led to tremendous improvements in treatment efficacy for most childhood cancers; overall 5-year survival is now greater than 75%. Long-term consequences of cure (i.e. adverse medical and psychosocial effects) have only recently begun to emerge as a primary focus of clinical research, including studies of health-related quality of life among survivors. Usually lacking in such efforts, however, is consideration of the impact of the cancer experience on the family, and the influence that the family's response to cancer has on quality of life in the child. From this qualitative analysis of seven focus groups with 45 parents of children a year or more out of cancer treatment, we report those aspects of a child's cancer diagnosis, treatment, and recovery that parents perceived as particularly difficult for their family, and the resources and coping behaviors parents perceived as helpful to their family in dealing with and managing the cancer experience. Using the Family Adjustment and Adaptation Response theoretical model to organize the data, the domains of strains and resources were delineated into themes and sub-themes related to the cancer, child, family, health-care system, and community. Within a third domain, coping, sub-themes were identified within the themes of appraisal-focused, problem-focused, and emotion-focused coping behaviors. Integration of this information should serve to improve future studies of health-related quality of life among children who survive cancer.
Copyright 2003 John Wiley & Sons, Ltd.