Psychosocial issues at-risk women encounter in the provision of care to a relative with breast cancer

Victoria H. Raveis, PhD, Sheindy Pretter, PhD, Tina Sapienza, MSW, and Monique Carrero, MS. Mailman School of Public Health, Columbia University, 100 Haven Avenue, Ste. 6A, New York, NY 10032, 212-304-5563, vhr1@columbia.edu

Background: As public awareness of a heredity component to some types of cancer has increased, more individuals are living with the uncertainty of when or if they may develop cancer. These issues become more complex when at-risk family members are directly involved in their ill-relative’s care. Women caring for a first-degree relative with breast cancer represent a vulnerable population. Through their careprovision, these women obtain intimate knowledge of their relative’s breast cancer experience. The emotional stress and burdens associated with having to provide assistance and support to an ill mother, sibling or daughter is compounded by their close identification with their relative’s health situation.

Methods: Data is drawn from an investigation of breast cancer survivorship and the family. In-depth interviews have been conducted with a diverse sample of women caring for a first-degree relative with breast cancer -- 70% white, non-Hispanic, 26% Hispanic, 4% Black. Qualitative analysis of the women’s interviews have delineated their reactions to their mother’s, daughters’ or sisters’ breast cancer diagnosis, the meaning of this event to them, the implications of these issues and the contribution of their careprovision to this experience.

Results: The analysis of the women’s narratives document that a relative’s breast cancer diagnosis and treatment subjects them to a period of crisis fraught with severe emotional distress and life/death concerns that parallels the “existential plight” patients encounter. The women’s reports indicate that their first-hand exposure to their relatives’ illness increased their sense of personal vulnerability and contributed to a diminished sense of future options. This potent combination of caring for a loved one with breast cancer while worrying about one’s own personal risk of developing the disease engendered considerable distress. Specifically, the women’s narratives demonstrate that this experience has intensified their bond with the ill relative, while also presenting challenges in their relationship. It has prompted their recognition of personal risk, promoted action plans to reduce their risk, precipitated a re-definition of personal values, altered their perceived future and raised concerns about the risk status of future generations.

Conclusions: Support programs and services need to address a broad array of salient issues and concerns that family members may be encountering. Women caring for a relative with breast cancer hold a dual status. While familial caregivers are commonly regarded as part of the care team, they are also affected by the cancer experience. Clinicians need to appreciate the existential plight familial caregivers may be enduring.

Learning Objectives:

3. Articulate the psychosocial issues confronting at-risk women caring for a relative with breast cancer.
7. Recognize the contribution that care-provision can make in the distress that at-risk women encounter.
11. Describe the impact of breast cancer on the family system.

Keywords: Breast Cancer, Caregivers

Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.

Recorded presentation

Studies on Prevention and Treatment of Breast and Cervical Cancers (Womens' Health Contributed Papers #1)

The 132nd Annual Meeting (November 6-10, 2004) of APHA