Crisis, Social Support, and the Family Response: Exploring the Narratives of Young Breast Cancer Survivors

Abstract

This article explores how 70 younger women diagnosed with breast cancer draw on social support resources. The authors found that most respondents’ core support networks were their families, and social support came in several forms including emotional, tangible, and informational. However, the authors also found that many respondents relied on a distinct form of social support, experiential support, which has not been identified in current research. Experiential support is defined as a relationship with someone who has gone through a similar illness and can help provide firsthand information, insight, and even hope. The authors conclude that experiential support is an important area for future research on social support and health outcomes.

KEYWORDS:

• breast cancer
• social support
• qualitative
• family

This research was supported by the Oncofertility Consortium (NIH 8UL1DE019587, 5RL1HD058296). This research has been approved by Northwestern University's Institutional Review Board (Approval #200711-0157).

Notes

*Partnered includes those women who are not legally married but consider themselves to be in permanent partnerships.

**This category indicates women who identify themselves as a parent. Although the overwhelming majority of women have biological children, this category also includes non-biological children including foster and stepchildren.

1. The operationalization of “young” or “younger” varies greatly in research on women with breast cancer. Some studies have age ranges up to 50 or 51 years of age (Bloom, Stewart, Johnston, & Fobair, 2001; Sammarco, 2001). We chose the age range of 18 to 40 because the current study is part of a larger research agenda on the impact of cancer on fertility and family goals and relationships (see footnote 2). Although some do become parents (either with biological children or through other means) after age 40, most adults become first-time parents by 40 (Child Trends, 2002); and between ages 18 and 40 is when most adults form long-term partnerships and/or marry (U.S. Census, 2005).

2. The sample is from a larger study that is looking at how younger women with breast cancer make treatment decisions with their physicians, their experiences during diagnosis and treatment, their experiences with secondary issues that arise from treatment such as potential infertility, and the impact of a breast cancer diagnosis on their future and family/partnership plans. For the larger study, we have interviewed patients and doctors and other health care workers who treat younger women with breast cancer. Here, we draw exclusively on the patient sample.

3. We were initially concerned that the resulting sample would be much more politicized than younger women with breast cancer in general or would only include women who utilize support networks through advocacy organizations as their primary means of social and emotional support. However, we found that only a few women in our sample could be classified as highly involved in such networks or groups. Because being involved in the cybercommunity regarding breast cancer (such as joining an e-mail list from an advocacy group or occasionally checking a message board) involves minimal, if any, commitment, we do not think the sample overrepresents those who are very immersed in the breast cancer community. Also, in some cases, the respondent had no involvement in the advocacy organization, but rather a friend or family member forwarded the recruitment advertisement onto them.

4. Although there is racial/ethnic diversity in our sample, in this article we focus on the commonality of experiences. We found only one point of difference in the utilization of social support across racial/ethnic groups. Those of racial/ethnic minority groups were somewhat more likely to discuss the role of faith and religious groups in their coping strategies. However, no one expressed religious groups as superseding their family support networks or experiential supportive relationships that we emphasize in this article.

5. In almost all cases, respondents themselves defined a support group as being face-to-face interaction, organized, and often sponsored by a cancer or health care agency or a church—so the 44.3% refers to involvement in this type of activity. In a handful of cases, women also turned to the Internet and online breast cancer Websites for social support, but most often these sites were used by respondents for information gathering regarding doctors, treatments, and side effects and not as a mechanism of social support.

6. All organizational names are pseudonyms.

7. All organizational names are pseudonyms.