Medical Advocacy among Latina Women Diagnosed with Breast Cancer.

Medical advocacy has continued to significantly impact quality of life and survivorship outcomes among Latina breast cancer survivors in the United States. However, little is known about the unique experiences of Latina survivors, including the perceived value, process, and context in which they practice medical advocacy. To help address this gap, we conducted a qualitative, secondary analysis of semi-structured focus groups with 18 Latina breast cancer survivors from Chicago, Illinois. Eligible women had to self-identify as (1) female, (2) Latina, (3) 18 years or older, and (4) having a breast cancer diagnosis 5 years ago or more. In total, 61% of participants were 50-59 years old, 83% were born in Mexico, and 100% spoke Spanish. The three emergent themes from the focus groups were (1) the cultural need for Latina advocates and support groups; (2) the process and experiences of becoming a community advocate within Latine culture; and (3) the cultural contexts for advocacy by Latina breast cancer survivors. Latina survivor advocates share strengths of receiving ongoing health education, peer support, and access to resources when being linked to a support group furthering their exposure to role models, increasing their awareness of opportunities in medical advocacy, and providing an entry to participate in medical advocacy.

Effects of smartphone interventions on cancer knowledge and coping among Latina breast cancer survivors: Secondary analysis of a pilot randomized controlled trial.

Objective: The My Guide smartphone application was developed to improve quality of life and symptom burden (primary outcomes) for Latina breast cancer survivors (BCS) and tested in a pilot randomized controlled trial compared to an attention-control condition (My Health smartphone application). This secondary analysis examined effects on breast cancer knowledge, coping, and cancer-related self-efficacy (intervention targets).Method: Latina BCS (N = 78) were randomized to My Guide or My Health for six weeks. Linear mixed-effects modeling evaluated the effects of time and study condition on the intervention targets. Effects by engagement were explored. Results: Both conditions showed improved breast cancer knowledge (p < 0.001), with a trend for greatest improvement among My Guide high users (p = 0.082). My Guide participants reported less self-blame overall than My Health participants (p = 0.020). There were no effects on cancer-related self-efficacy (ps > 0.05). Conclusion: Culturally-informed smartphone applications may enhance breast cancer knowledge and promote adaptive coping among Latina BCS.

Web-Based Information Seeking Behaviors of Low-Literacy Hispanic Survivors of Breast Cancer: Observational Pilot Study.

BACKGROUND: Internet searching is a useful tool for seeking health information and one that can benefit low-literacy populations. However, low-literacy Hispanic survivors of breast cancer do not normally search for health information on the web. For them, the process of searching can be frustrating, as frequent mistakes while typing can result in misleading search results lists. Searches using voice (dictation) are preferred by this population; however, even if an appropriate result list is displayed, low-literacy Hispanic women may be challenged in their ability to fully understand any individual article from that list because of the complexity of the writing. OBJECTIVE: This observational study aims to explore and describe web-based search behaviors of Hispanic survivors of breast cancer by themselves and with their caregivers, as well as to describe the challenges they face when processing health information on the web. METHODS: We recruited 7 Hispanic female survivors of breast cancer. They had the option to bring a caregiver. Of the 7 women, 3 (43%) did, totaling 10 women. We administered the Health LiTT health literacy test, a demographic survey, and a breast cancer knowledge assessment. Next, we trained the participants to search on the web with either a keyboard or via voice. Then, they had to find information about 3 guided queries and 1 free-form query related to breast cancer. Participants were allowed to search in English or in Spanish. We video and audio recorded the computer activity of all participants and analyzed it. RESULTS: We found web articles to be written for a grade level of 11.33 in English and 7.15 in Spanish. We also found that most participants preferred searching using voice but struggled with this modality. Pausing while searching via voice resulted in incomplete search queries, as it confused the search engine. At other times, background noises were detected and included in the search. We also found that participants formulated overly general queries to broaden the results list hoping to find more specific information. In addition, several participants considered their queries satisfied based on information from the snippets on the result lists alone. Finally, participants who spent more time reviewing articles scored higher on the health literacy test. CONCLUSIONS: Despite the problems of searching using speech, we found a preference for this modality, which suggests a need to avoid potential errors that could appear in written queries. We also found the use of general questions to increase the chances of answers to more specific concerns. Understanding search behaviors and information evaluation strategies for low-literacy Hispanic women survivors of breast cancer is fundamental to designing useful search interfaces that yield relevant and reliable information on the web.

Patterns of Use of Smartphone-Based Interventions Among Latina Breast Cancer Survivors: Secondary Analysis of a Pilot Randomized Controlled Trial.

BACKGROUND: Latina breast cancer survivors experience poorer health-related quality of life (HRQoL), greater symptom burden, and more psychosocial needs compared to non-Latina breast cancer survivors. eHealth platforms such as smartphone apps are increasingly being used to deliver psychosocial interventions to cancer survivors. However, few psychosocial eHealth interventions have been developed specifically for Latina breast cancer survivors. Further, little is known about how Latinas, in general, engage with eHealth interventions and whether specific participant characteristics are associated with app use in this population. We evaluated the use of 2 culturally informed, evidence-based smartphone apps for Latina breast cancer survivors-one that was designed to improve HRQoL and reduce symptom burden (My Guide) and the other to promote healthy lifestyle behaviors (My Health). OBJECTIVE: The objectives of our study were to explore the patterns of use of the My Guide intervention app and My Health attention-control app among Latina breast cancer survivors. METHODS: Eighty Latina breast cancer survivors were randomized to use the My Guide or My Health app for 6 weeks. Assessments were collected at baseline (T1), immediately after the 6-week intervention (T2), and 2 weeks after T2 (T3). Specific study outcomes included subdomains of HRQoL, symptom burden, cancer-specific distress, cancer-relevant self-efficacy, and breast cancer knowledge. RESULTS: On average, participants used their assigned app for more than 1 hour per week. Sociodemographic or psychological characteristics were not significantly associated with app use, except for employment status in the My Health group. Content related to common physical and emotional symptoms of breast cancer survivors as well as recommendations for nutrition and physical activity were most frequently accessed by My Guide and My Health participants, respectively. Lastly, clinically meaningful improvements were demonstrated in breast cancer well-being among low app users (ie, <60 minutes of use/week) of My Guide and social well-being among high app users (ie, ≥60 minutes of use/week) of My Health. CONCLUSIONS: The favorable rates of participant use across both apps suggest that Latina breast cancer survivors are interested in the content delivered across both My Guide and My Health. Furthermore, since sociodemographic variables, excluding employment status, and baseline HRQoL (psychological variable) were not related to app use, My Guide and My Health may be accessible to diverse Latina breast cancer survivors. TRIAL REGISTRATION: ClinicalTrials.gov NCT03645005; https://clinicaltrials.gov/ct2/show/NCT03645005.

Multilevel determinants of financial toxicity in breast cancer care: perspectives of healthcare professionals and Latina survivors.

PURPOSE: Financial toxicity is a multidimensional side effect of cancer treatment. Yet, most relevant research has focused on individual-level determinants of financial toxicity and characterized only patient perspectives. This study examined the multilevel determinants of financial toxicity from the perspectives of Latina breast cancer survivors and healthcare professionals. METHODS: We analyzed qualitative data from focus groups with 19 Latina breast cancer survivors and interviews with 10 healthcare professionals recruited through community partners and venues in Chicago. RESULTS: At the individual-level, the lack of knowledge and prioritization regarding financial aspects of care (e.g., costs of treatment, insurance coverage) was identified as important determinants of financial toxicity. However, healthcare professionals emphasized the need for early financial planning, while survivors prioritized survival over financial concerns immediately after diagnosis. At the interpersonal-level, social networks were identified as important platforms for disseminating information on financial resources. At the community-level, community norms and dynamics were identified as important barriers to seeking financial assistance. Access to culturally astute community-based organizations was considered one potential solution to eliminate these barriers. At the organizational/healthcare policy-level, financial assistance programs' restrictive eligibility criteria, lack of coverage post-treatment, limited availability, and instability were identified as major determinants of financial toxicity. CONCLUSION: Our findings suggest that multilevel interventions at the individual-, interpersonal-, community-, and organizational/healthcare policy-levels are needed to adequately address financial toxicity among Latina and other survivors from disadvantaged communities.

An Electronic Health Intervention for Latina Women Undergoing Breast Cancer Treatment (My Guide for Breast Cancer Treatment): Protocol for a Randomized Controlled Trial.

BACKGROUND: Among Latinas and Hispanics (henceforth referred to as Latinas), breast cancer is the most commonly diagnosed cancer and the leading cause of cancer-related deaths. However, few interventions have been developed to meet the needs of Latina women undergoing active treatment for breast cancer. OBJECTIVE: This paper aims to describe the procedures and methods of My Guide for Breast Cancer Treatment and the plans for conducting a multisite randomized controlled trial to investigate the feasibility and preliminary efficacy of this smartphone-based app for Latina women in active treatment for breast cancer. METHODS: Study participants will be randomized to the My Guide for Breast Cancer Treatment intervention or the enhanced usual care control condition for 12 weeks. Participants will have access to innovative features such as gamification via virtual awards to reinforce usage and an adaptive section that presents targeted material based on their self-reported concerns and needs. Using a stepped-care approach, intervention participants will also receive telecoaching to enhance their adherence to the app. Study outcomes and intervention targets will be measured at study enrollment (before randomization), 6 and 12 weeks after initial app use. General and disease-specific health-related quality of life (HRQoL) and symptom burden are the study's primary outcomes, whereas anxiety, depression, fear of cancer recurrence, physical activity, and dietary intake are secondary outcomes. RESULTS: Recruitment began in August 2019 and is expected to be completed by August 2020. We expect to submit study results for publication by fall 2020. CONCLUSIONS: My Guide for Breast Cancer Treatment has the potential to improve HRQoL and reduce symptom burden, and increase access to supportive care resources among Latina breast cancer patients. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/14339.