| Learning Objective #1: Develop an awareness of unique needs of families with hereditary cancer risk | |||
| Learning Objective #2: Identify themes and processes associated with families with hereditary cancer risk |
Aims: This pilot, qualitative study was designed to initiate interviews, test and refine transcription and data analysis procedures, and begin to explore unanswered questions about adaptation of individuals and families adapting to hereditary cancer risk.
Significance: At-risk persons may avoid testing or obtaining their results and often do not follow up with screening and preventive interventions. No family studies have addressed the experience. A grounded theory study can inform education, support strategies and genetic counseling outcomes.
Sample: Five families of parents and their offspring (ages 15-24) were purposively sampled.
Methods: All participants responded to broad questions, recalling their first awareness of the cancer risk, if they decided to find out about their individual risk status, how risk was communicated to family members and others, effects on their lives, and views about their adjustment. The constant comparative method was used in data analysis as described by Strauss and Corbin.
Findings: Themes that emerged related to a basic social process of intergenerational vulnerability. Tentatively, this incorporated living with awareness of cancer risk, varied individual and family responses, and the factors which influenced those responses. These included ages and meanings around initial awareness, accuracy of information, and nature of family communication and decision making. Communication about risk ranged from open disclosure to selective and closed communication styles. Key decisions focused on whether to be tested, to obtain results, to ignore or cope with the risk, and whether to select intensive screening or active prophylaxis. Feelings of vulnerability varied by gender, age and experiences. Participants recommended ongoing counseling throughout the genetic testing or cancer episodes and afterwards and provision of support groups. A future study will continue individual phone interviews and in-person videotaped family interviews. The sample will be purposively expanded until saturation is reached.