“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.