RESUMO
PURPOSE/OBJECTIVES: To investigate patient-physician communication from the patient's perspective about guidelines and sources of information used in developing survivorship care and preferred avenues for information delivery to African American breast cancer survivors. DESIGN: Qualitative. SETTING: Medical centers in the eastern United States. SAMPLE: 39 African American breast cancer survivors with a mean age of 55. METHODS: Each participant contributed to one of four two-hour focus group discussions and completed brief questionnaires regarding sociodemographic characteristics and cancer-specific data. Focus group topics included involvement in discussions and decision making about survivorship care, specific instructions and information that physicians provided regarding follow-up medical care and preventive health actions, concerns about recurrence and ways to prevent it, and sources of information used to develop survivorship care plans. MAIN RESEARCH VARIABLES: Survivorship care, patient-provider communication, information delivery methods, and African American breast cancer survivors. FINDINGS: Participants reported gaps in the information given to them by physicians about their diagnosis, treatments, side effects, and guidelines for follow-up care. Participants expressed strong interest in self-care practices aimed at reducing their risk of recurrence and receiving evidence-based information and guidelines from healthcare providers. The majority (about 90%) reported physician checkups and mammography screening during the prior year, whereas only 54% reported making daily efforts to improve their health and reduce their risk of recurrence. Although evidence-based guidelines are available to healthcare providers delivering follow-up care to breast cancer survivors, more than 90% of participants in the present study reported a lack of specific recommendations regarding diet or physical activity as ways to improve quality of life and health as a cancer survivor. CONCLUSIONS: The present study underscores 2006 findings from the Institute of Medicine that strategies for delivering information and guidance to cancer survivors and coordinating their care remain important issues for patients and their healthcare providers. IMPLICATIONS FOR NURSING: The present study's findings highlight the need expressed by breast cancer survivors for comprehensive guidance from healthcare providers in developing plans of care that improve patients' quality of life and target recurrence risk. Guidelines are available for dissemination and use in medical settings; however, the guidelines have not been incorporated into standard medical practice for patients with cancer. Information about long-term follow-up care after primary treatment should target the specific needs of survivors from diverse ethnic, socioeconomic, and educational backgrounds to promote understanding of surveillance to detect recurrence, long-term effects of cancer treatments, and general health maintenance.