The Unmet Information and Support Needs of Women with a Family History of Breast Cancer: A Descriptive Survey

Abstract

This study aims to survey the unmet support needs of women at increased risk of developing breast cancer. In total, 173 unaffected women with a family history of breast cancer completed a 28-item purposely-designed mailed survey. The majority of participants did not report a high level of unmet need for support. Receiving further information about cancer genetics was the most commonly reported area of unmet need. Only about 20% of participants reported a moderate to high degree of interest in attending a hypothetical support group. However, a higher degree of interest was expressed in internet-based information and supportive interventions. Amongst those interested in attending a support group, discussion, and receiving further information were the most preferred activities. Higher levels of unmet support needs were significantly associated with interest in attending groups. No demographic variables were found to predict interest in attending a support group. Implications for those considering establishing support groups are discussed.