Creating the basis for a breast health program for female survivors of Hodgkin disease using a participatory research approach.

Purpose/objectives: To learn from female survivors of Hodgkin disease about their perceptions of their current health status and future health risks, self-care practices to prevent or diminish health risks, and what kind of breast health program could benefit them, including the most effective methods and optimal times for learning about breast health.

Design: Participatory research using focus groups.

Setting: Urban pediatric cancer center.

Sample: 1 African American and 19 Caucasian female survivors of Hodgkin disease aged 16-26 years, diagnosed at least two years before the start of the study, and treated with mantle radiation therapy. Participants were recruited during visits to an outpatient clinic.

Methods: Six open-ended questions were asked during three separate focus group sessions. Transcribed data were evaluated by content analysis techniques and analyzed to identify common themes.

Main Research Variables: Current health status and perceived health risks, current health practices, and effective methods and timing for breast health teaching.

Findings: Survivors reported feeling damaged by their cancer and its treatment and perceived that they were at risk for breast cancer. Self-care and risky behaviors also were reported. Internal influences (e.g., fear) and external influences (e.g., family) motivated survivors to participate in health promotion activities. Effective methods identified for learning about breast health included having access to other survivors, being respected as an adult, and having one-on-one staff teaching and peer support. The preferred timing of teaching varied, but survivors generally supported a gradual provision of information.

Conclusions: A positive listening environment is important for developing a breast health program for survivors. An essential first step is to create an opportunity for survivors to tell about their experiences with cancer, including its impact on their lives. Information regarding breast health must be provided in multiple formats during and after treatment if good practices are to be undertaken.

Implications For Nursing: The provision of adequate information during and after therapy as well as peer counseling in a positive listening environment are important in helping survivors participate in health promotion activities.