Information, support, and communication needs of women with a family history of breast cancer

In this article the role of information, support, and communication in promoting adaptation to the risk of breast cancer is reported. These variables emerged from an in-depth study, of women at risk for breast cancer because of breast cancer in one or more of their primary (first degree) relatives. Fifty-five women with mothers, sisters, mother and sister, or mother and another primary relative were interviewed using in-depth semi-structured, tape-recorded interviews. After transcription, data were analyzed using qualitative analysis procedures. A three-phase process of adaptation to the risk of breast cancer was uncovered which was subsequently, validated with two study participants. Information, support, and communication emerged as important factors in facilitating the adjustment of women throughout the three phases of the process. as women ''lived'' the breast cancer experience of their relative as they developed a perception of their personal risk for breast cancer, and finally as they put the risk of breast cancer ''in its place.'' Despite the importance of information and support, most women had difficulty meeting these needs. Also, communication patterns both within the family and with health professionals were generally not helpful for these women. Issues related to the ill relative as ''manager'' of cancer-related information, the ''ownership style'' of the woman at risk, and the accessibility and availability of resources influenced women's adaptation to feelings of risk. Women's needs for information, support, and communication and facilitating factors are described in detail, and recommendations for clinical practice and research offered.