Families of Childhood Cancer Survivors

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DESCRIPTION (provided by applicant): There is ready agreement among researchers and clinicians that childhood cancer is a "family disease." Whereas numerous studies have examined the psychosocial effects of cancer on adolescent and young adult survivors of pediatric malignancies, there is relatively little research on the long-term consequences of survivorship for the family as a unit. PURPOSE: Through in-depth interviews with cancer survivors and select family members, and through direct and systematic observation of family dynamics during these interviews, this research will examine past and current effects of cancer on the entire family system. The intent of this work is to gather needed background data that will facilitate the future development and testing of family-focused psychosocial interventions for families of childhood cancer patients and survivors. DESIGN: Individuals eligible for this study will be drawn from a cohort of 18-39 year old young adult survivors of childhood cancer who participated in a recent NCI-funded multi-site study of quality of life outcomes. For the study proposed here, these subjects will be asked to invite family members to participate in follow-up interviews conducted at their homes. In approximately 48 qualitative, semi-structured interviews we will ask these childhood cancer survivors and invited family members to discuss how childhood cancer has affected their family, and to specify desired content, timing and methods of delivering psychosocial interventions that might be helpful now and/or would have been helpful at some other time in the past. The management and analysis of qualitative data will correspond with a "grounded theory" approach in that analytic procedures involving thematic coding and constant comparative analyses will derive patterns and themes within the data, which then may be categorized according to clusters of conceptual meanings or constructs. Data collected by means of direct observation will provide an alternative source of data by which to triangulate findings. SIGNIFICANCE: The results will be used to inform subsequent investigations intending to test hypotheses or theories related to the on-going and long-term impact of cancer in the family. The information also will be useful to investigators and clinicians interested in developing and testing family support interventions via pilot studies or randomized clinical trials.