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

Abstract

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.

Neighborhood socioeconomic status and low‐value breast cancer care

“…The physical and financial burdens of lymphedema often lead to psychological sequelae including concerns about body image and constant reminders of their breast cancer diagnoses and treatments 39 . Moreover, individuals from minoritized and marginalized groups with lymphedema report even worse outcomes related to mental and physical health and quality of life 40 . Financial repercussions are often greater in those populations given their disproportionate representation in occupations requiring manual labor with less generous flexibility and benefits 40 .…”

“…39 Moreover, individuals from minoritized and marginalized groups with lymphedema report even worse outcomes related to mental and physical health and quality of life. 40 Financial repercussions are often greater in those populations given their disproportionate representation in occupations requiring manual labor with less generous flexibility and benefits. 40 Combined with higher monthly costs, marginalized and minoritized individuals are placed at an undue burden of economic disadvantage.…”

“…40 Financial repercussions are often greater in those populations given their disproportionate representation in occupations requiring manual labor with less generous flexibility and benefits. 40 Combined with higher monthly costs, marginalized and minoritized individuals are placed at an undue burden of economic disadvantage. 41 Taken together, it can be argued that the financial, emotional, and quality of life cost for patients living in neighborhoods with low nSES undergoing unnecessary ALNDs can be catastrophic.…”

Supportive Care Needs of Breast Cancer Survivors: A Systematic Review

“…Spiritual/existential needs Overall, there were twelve studies where spiritual needs were reported by breast cancer survivors [50,51,46,42,40,33,30,27,12,4]. Religion and/or spirituality were an important source of emotional support for them [42,45,46].…”

“¿Qué viene después?”: Latina women diagnosed with breast cancer twice.

“…Further, they have reported receiving critical information in support groups such as details about treatments, where to purchase breast prostheses, and the process of reconstructive surgery (Buki, Schwartz, et al, 2021; Galván et al, 2009). Instrumental support, which includes financial assistance and help with household chores, has also helped Latina survivors manage their condition (Ashing-Giwa et al, 2006; Buki, Rivera-Ramos, et al, 2021; Galván et al, 2009). Research is lacking, however, on the experiences of women diagnosed twice and how a previous experience with cancer manifests as they cope with a second diagnosis.…”