Reports of information and support needs of daughters and sisters of women with breast cancer

The aim of this study was to describe the information and support needs of women who have primary relatives with breast cancer. The Information and Support Needs Questionnaire (ISNQ) was developed and revised from previous qualitative and pilot studies. The ISNQ addressed concepts of the importance of, and the degree to which, 29 information and support needs related to breast cancer had been met. The study sample consisted of 261 community-residing women who had mothers, sisters, or a mother and sister(s) with breast cancer. Data were collected using a mailed survey. In addition to the ISNQ, additional items addressed family and health history, breast self-care practices, perception of the impact of the relative's breast cancer and other variables. Also included were established and well-validated measures of anxiety and depression. The findings document women's priority information and support needs. The information need most frequently identified as very important was information about personal risk of breast cancer. Other highly rated needs addressed risk factors for breast cancer and early detection measures. Generally, the women perceived that their information and support needs were not well met. These findings illuminate needs of women for more information and support when they have close family relatives with breast cancer and opportunities for primary care providers to assist women in addressing their needs.