The ultimate goal of this multi-phase research effort is to develop, implement and evaluate effective, evidence-based practice guidelines to assist the wide range of information providers who are, and will continue to, impart complex and sensitive information regarding the risk of heritable breast, ovarian and colon cancer (BOCC) in both formal and informal environments. Before these guidelines can be developed a comprehensive, systematic in-depth review of how risk information is currently disseminated and the knowledge, attitudes and beliefs of those relating the information, must be conducted. This study (Phase Il) is an in-depth functional geography (FG) analysis of 12 settings (6 U.S./6 Canada) where information regarding heritable BOCC risk information is disseminated. Setting is defined as any environment in which heritable BOCC-risk information is provided as well as the network whereby this information is dispersed. Any person in the setting/network who provides any level of information to patients/clients is eligible for this study. Informants will be interviewed by telephone using the Telephone Interview Guide (TlG), designed to assess their knowledge, attitudes, behaviors, practices and perceptions (KABPP) regarding the provision of heritable BOCC risk information. Snowball sampling will be used to ensure site saturation. The qualitative responses will be transcribed verbatim and analyzed using a rigorous grounded-theory approach. Responses to the demographic questions, to the twenty Lickert-scale items and to the coded open-ended responses will be analyzed using descriptive statistics, log linear modelling, logistic regression and analysis of variance. The results: (i) will provide a path diagrammatic FG schema of information provision settings; (ii) will provide data from which preliminary practiCe guidelines for information providers will be established and; (iii) will be used to convert the TIG into a self-administered questionnaire for use in an international mailed survey in Phase III. Results of this research will be critical to: the development of informational practice guidelines; to the formation of effective educational interventions for heritable BOCC risk providers; and to supplement the current studies of the effects of risk notification related to genetic testing and counselling for patients/clients and their families.
