"I never heard anything about it": Knowledge and psychosocial needs of Latina breast cancer survivors with lymphedema.

OBJECTIVE: Breast cancer is the most commonly diagnosed form of cancer and the leading cause of cancer-related death among Latina women in the United States. One aspect of recovery that has been underrepresented in the English-language literature is the recovery of Latina women who have developed lymphedema, a debilitating condition characterized by persistent swelling of the arm, hand, chest, and/or breast. To fill this research gap, a study was conducted to examine the lived experiences of Latina women with breast cancer-related lymphedema. METHODS: Given the limited scholarship on this topic, qualitative methods were used to obtain a foundational and nuanced understanding of Latina women's experiences. Semi-structured interviews were conducted with a sample of 10 Latina survivors with breast cancer-related lymphedema. Data were analyzed through thematic analysis and constant comparison methodology. RESULTS: The data analysis yielded three major themes: knowledge of lymphedema, impact of lymphedema diagnosis, and coping with lymphedema. Participants had limited knowledge of lymphedema and its risk factors upon diagnosis, in addition to barriers accessing quality care. They also noted psychological distress related to a significant financial burden as well as social anxiety related to interacting with others while wearing compression gloves or sleeves. A major coping strategy was receiving social support from friends, family, peers in structured support groups, and spiritual/religious groups or practices. CONCLUSIONS: Our findings bring to light contextual factors that may place Latina breast cancer survivors at increased risk for lymphedema and for experiencing a high burden managing their condition. Recommendations are provided for primary, secondary, and tertiary prevention.

"Our organs have a purpose": body image acceptance in Latina breast cancer survivors.

OBJECTIVE: Studies examining body image concerns among breast cancer survivors have primarily captured the experiences of non-Latina white women. Thus, little is known about body image concerns among Latinas. To address this gap, we examined Latina breast cancer survivors' lived experiences related to body image. METHODS: Twenty-seven Latina breast cancer survivors provided data through focus groups and individual interviews as part of a larger study conducted by the first author. In the current paper, we conducted a secondary thematic analysis to uncover women's experiences unique to body image concerns. RESULTS: We identified 2 themes related to women's experiences with body image: (a) perceptions of loss and reconstruction and (b) process of achieving body image acceptance. The salience of these themes varied as a function of survivorship stage and type of surgery. CONCLUSIONS: Body image concerns are distressing for Latina breast cancer survivors. Accepting their altered appearance was an ongoing and complex process. Clinical implications include the need for psychoeducational programs and tailored interventions to enhance women's body image acceptance.

Essential Qualitative Inquiry in the Development of a Cancer Literacy Measure for Immigrant Women.

In this article, we describe the development of a comprehensive measure of breast and cervical cancer literacy for immigrant populations. To our knowledge, this is the first attempt to use a health literacy framework in this endeavor. Using qualitative strategies, we (a) developed an understanding of the experiences of Mexican and Filipina immigrant women with low health literacy through individual interviews, (b) conducted focus groups to obtain feedback from experts and participants to determine the adequacy of items included in the measure, and (c) refined the set of items to create an empirically based measure. The final measure included 129 items that assess beliefs, attitudes, knowledge, emotions, and contextual factors related to breast and cervical cancer. Processes for adapting the measure for use with other immigrant groups are discussed.