To the best of our knowledge this is the first bilingual education intervention that focused exclusively on Latina BCS. In this study, we pilot tested the Nueva Luz
intervention that targeted a sample of English and Spanish speaking Latina BCS in order to improve QOL in the immediate survivorship period. The intervention was innovative in providing linguistic and cultural congruency in the intervention. The pilot study demonstrated feasibility and findings suggest that improvements were seen in overall QOL, uncertainty and distress, and that the effect was sustained over time. Although significant differences were seen on QOL, uncertainty and distress measures, these differences were small with only mild improvement observed. Our data clearly shows that Latina BCS have many QOL concerns. Physically, this sample (96%) reported problems with fatigue, a symptom described in the literature as distressing for cancer survivors across ethnic groups. (Eversley et al., 2005
; Fatone, Moadel, Foley, Fleming, & Jandorf., 2007
; Janz et al., 2007
). The most prevalent symptoms reported include menstrual changes, hot flashes/sweats, weight gain, aches and pain and sleep changes. Similar findings have been reported on the symptom experienced by African-American and Non-Latina White breast cancer survivors after completing primary treatment (Bowen et al., 2007
; Ganz, Kwan, Stanton, Bower, & Belin, 2011
; Janz et al., 2009
). Previous research indicates that Latinas and African-Americans reported lower physical well-being relative to Non-Latina White women (Janz et al., 2009
The primary domains of concern were psychological and social for this cohort. The women in this study reported severe distress related to treatment, were concerned about changes in their appearance, and were fearful of recurrence, a new cancer and the cancer spreading. These findings are supported by a number of previous studies in multiethnic samples where Latinas have reported poorer psychological and emotional well-being than African-Americans and Non-Latina White breast cancer survivors (Ashing-Giwa, Tejero, Kim, Padilla, & Hellemann, 2007
; Bowen, et al., 2007
; Carver, Smith, Petronis, & Antoni, 2006; Janz, et al., 2009
; Nápoles-Singer, Ortiz, O’Brien, Díaz-Méndez, & Pérez-Stable, 2007). Within the social domain, participants were extremely worried for their daughters and close female relatives getting breast cancer and concerned about family distress. Similar to other studies Latinas have reported the lowest level of social support relative to African-American and Non-Latina White women (Ashing-Giwa, Tejero, Kim, Padilla, & Hellemann, 2007
; Galván, Buki, & Garcés, 2009
; Janz et al., 2008
). Other studies have reported that Latinas experience poorer QOL and increased distress compared to African-American and Non-Latina White women (Ashing-Giwa, Padilla, Tejero, & Kim, 2004; Spencer, et al., 1999).
Spirituality/Religiosity is central to Latino culture and provides the foundation for coping with breast cancer and its consequences (Campesino & Schwartz, 2006
; Wildes et al., 2009
) as evidenced by the high levels of spirituality in this sample. These results are supported by other studies that have documented that Latina breast cancer survivors with high levels of religiosity/spirituality feel closer to and find comfort in God (Buki, Salazar, & Pitton, 2009
), use prayer as a coping strategy and believed their faith was the key in recovering and coping with their illness and cancer survivorship experience (Fatone, Moadell, Foley, Fleming, & Jandorf, 2007
; Wildes, et al., 2009
). Other research suggests that faith and spiritual well being are also a very important component of QOL for African-American breast cancer survivors (Bellizzi et al., 2010
; Russell, Von Ah, Giesler, Storniolo, & Haase, 2008
). Spiritual care is essential to QOL and it is important to recognize the influence of religious and spiritual beliefs and its potential impact in adjusting to life after breast cancer treatment.
The mean score overtime for uncertainty in this sample was higher than mean scores for predominantly Non-Latina White samples of breast cancer survivors reported in other studies (Sammarco & Konecny, 2008
; Sammarco & Konecny, 2010
). This finding suggests that Latina breast cancer survivors may experience a greater amount of uncertainty related to their lack of understanding about breast cancer, side effects of cancer, financial concerns, fear of recurrence, and what to expect after primary treatment has been completed. Research suggests that increased uncertainty may have a negative impact on overall QOL (Sammarco & Konecny, 2008
). Therefore it is important to develop culturally congruent strategies to reduce uncertainty in Latina BCS.
We had anticipated that the bilingual intervention would result in significant improvements in overall QOL for our Latina BCS. Although we were able to detect positive changes, these changes were mild. This may not be surprising given that our sample consisted of primarily Spanish speaking and low acculturated Latinas. Cancer stage may have also played a role in the results as well as ethnicity and acculturation. A previous study (Ashing-Giwa, 2006
) has suggested that Latinas, especially those with low acculturation, have difficulty understanding and processing information related to their breast cancer provided in the medical care setting. The evidence on QOL in Latina BCS survivors suggests that Latinas face special challenges navigating the US health care system not only based on language, but also on other contextual factors such as financial and insurance barriers, low acculturation and communication problems, immigration status, lack of significant social support, unemployment, lack of transportation, and lack of childcare. These are shown to be correlates of poorer health outcomes in disadvantaged ethnic minorities (Ashing-Giwa, 2006
; Ashing-Giwa, 2005
; Janz et al., 2009
; Lopez-Class, Gomez-Duarte, Graves, & Ashing-Giwa, 2011; Lopez-Class, Perret-Gentil, et al., 2011
; Yanez, Thompson, & Stanton, 2011
Findings should be interpreted within the limitations and strengths of this pilot study. First, this was a mentored research funded grant with no additional funds for research personnel and as a result the principal investigator was responsible for all aspects of study procedures, including subject accrual, obtaining informed consent, intervention implementation and follow-up for both the experimental and attention control groups. Secondly, the sample consisted of Latina BCS receiving care at a NCI designated cancer center in southern California and may not be representative of a national sample of other Latina breast cancer survivors. The majority of the subjects were of Mexican ancestry. Also there was a diversity of ages and levels of education consequently results may not generalize to other Latina breast cancer survivor subgroups. Although the majority of the sample was monolingual in Spanish, the majority of the women had lived in the US an average of 25.5 years consequently the experiences of these participants may differ from recent Latina immigrants. The relatively small sample limits interpretability and generalizability. Despite these limitations, this pilot study provides notable and important findings on the feasibility of a linguistically and culturally sensitive intervention. These findings can inform further development and testing.
The findings from this pilot study suggest that Latina patients with breast cancer experience many QOL concerns and provide preliminary insight into the impact of a tailored bilingual education intervention on the QOL of Latina breast cancer survivors. Our study adds to the limited body of existing literature of Latina women living with breast cancer and offers some key directions for guiding the development of culturally and linguistically tailored QOL interventions. Results suggest that this understudied cancer population has multiple QOL and survivorship issues and concerns that might put them at risk for poor QOL and adjusting to survivorship, especially when compared to Non-Latina White breast cancer survivors. There is a need to provide breast cancer survivors with information, support and resources to assist them in managing their symptoms and other QOL issues beyond the immediate treatment period and into survivorship.
Implications for Nursing Practice
Latina breast cancer survivors are likely to benefit from bilingual interventions that can potentially help improve quality of life. More studies are needed to determine the efficacy of linguistically and culturally tailored interventions to improve QOL in post-treatment survivorship for this population. Non-English speaking and low acculturated Latinas are more vulnerable to poor QOL, increased distress and may benefit from bilingual education interventions that consider core cultural values and beliefs. There is evidence to indicate that Spanish monolingual or limited English speaking Latinas would like to receive cancer education in their native language (Janz et al., 2008
) that is congruent with their cultural beliefs and values. Studies have indicated that patients have more difficulty communicating and understanding written and verbal information given by their health care provider (Fatone, Moadel, Foley, Fleming, & Jandorf, 2007
). This pilot randomized clinical study broadens our understanding of the experience of Latina breast cancer survivors and contributes to the limited body of knowledge of interventional research in this understudied population. Results demonstrate that patients can be accrued, will fill out the questionnaires and participate in an intervention. More culturally congruent intervention research is needed to help improve health outcomes of Latina breast cancer survivors. Future studies should aim to test the intervention among larger samples with the statistical power to test for interaction among key variables. There is need to do more inquiry with the teaching materials to revise the intervention to it make stronger. There are tremendous cultural differences regarding communication styles, decision-making preferences, adherence to treatment, use of rituals and willingness to adopt surveillance and health maintenance behaviors post-cancer treatment among ethnic groups. Attention to these differences by health care practitioners is a necessary component of the delivery of culturally congruent healthcare in a diverse society. Breast cancer survivors need and deserve all the knowledge and tools available in their preferred language to improve quality of life, transition into survivorship, decrease burden and reduce or eliminate health disparities.