No abstract

Background Qualitative research on cancer patients’ survivor-identity and lived experiences in low- and middle-income countries is scarce. Our study aimed at exploring the concept and experience of survivorship for Mexicans living with breast, cervical, and prostate cancer. Methods We conducted a qualitative study in Mexico City, Morelos, Nuevo León, and Puebla. The participants were breast, cervical, and prostate cancer patients ≥18 years of age with completed primary cancer treatment. Data were collected via in-depth interviews and analyzed using an inductive thematic approach. Results The study included 22 participants with a history of breast, 20 cervical, and 18 prostate cancer. Participants accepted the term “cancer survivor” as a literal interpretation of being alive, medical confirmation of treatment completion, or achievement of a clinical result possibly indicative of cure. The majority of respondents perceived that the future is out of their control and under God’s will. They linked cure to divine intervention and did not demonstrate the sense of empowerment that is often associated with the survivorship term. The principal themes of their narratives encompass: 1) adverse physical and sexual experiences; 2) emotional problems; 3) cancer-related stigma; 4) challenges to obtaining health-related information; 5) financial hardship; and 6) experience of strengthening family ties in order to provide them with support. In addition, women with breast cancer reported distress caused by changes in body image and positive experience with support groups. Conclusion In Mexico, cancer patients report complex survivorship experiences that demand post-treatment follow-up and support. There is the need to implement comprehensive, culturally-relevant survivorship programs focused on emotional, informational, and in-kind support and empowerment of cancer patients.

Breast cancer civil society, as represented by non-governmental organizations (NGOs) in this study, can play an essential role in breast cancer control. Their breast cancer-related programs often reflect the breast cancer burden and the resources available for cancer control within the country or region they serve. This report reviews organizational features and program activities of 154 NGOs involved in breast cancer control from 35 countries. Breast cancer civil society in low and lower-middle income countries are most often associated with hospitals and medical professionals and focus on direct medical services, providing information, raising community awareness, and early detection campaigns. In upper-middle income countries, NGOs were likely to be survivor-led and there were more breast cancer-specific organizations. NGOs played a lesser role in provision of direct medical services and had a greater program emphasis on other areas of patient services, including emotional support. In high income countries, they were typically survivor-led, breast cancer-specific NGOs were prominent, and NGOs had a more prominent focus on research, advocacy and legal rights compared to other resource settings.

The objective of the this paper is to assess and identify the key strengths and weaknesses for cancer control NGOs in Latin America, with the goal to make recommendations about how to improve thev impact of the patient advocacy movement as it pertains to cancer. The methods included literature review, expert interviews and site visits to Latin American cancer hospitals and NGOs. The overall findings conclude that NGOs currently do not take a leadership role in cancer control in Latin America. The lack of a survivorship movement, faulty patient information services and failure of the governments to include NGOs in policy creation are identified as areas for further project work and collaboration. The stigma of cancer still remains and a burgeoning patient movement can be created to help destigmatize and debunk the myths that surround cancer.

Background The COVID-19 pandemic has been felt acutely in Latin America with several countries having among the highest numbers of SARS-CoV-2 cases and related deaths. Individuals living with underlying health conditions have an increased risk of severe disease or death from COVID-19. Patient advocacy organizations often provide supportive services to these individuals and can offer a unique perspective of the patient experience. The objective of this study was to assess the effects of COVID-19 on access to health services in Latin America, as reported by patient advocacy organizations representing individuals living with autoimmune, chronic, and noncommunicable diseases. Methods A cross-sectional study was conducted in August 2020 with patient advocacy organizations in Latin America to measure perceived effects from COVID-19 and reported access to health services among individuals living with autoimmune, chronic, and noncommunicable diseases. An original, online survey was developed and deployed in Spanish and Portuguese. Univariate and bivariate analysis was conducted across two main subject areas: perceived patient effects from COVID-19 and patient access to health services. The main outcomes of analysis considered patient access to care during COVID-19 based on type of chronic illness and geographical region in Latin America. Results A total of 81 survey responses were analyzed. A majority (83%) of patient advocacy organizations reported their patients experienced delays receiving their treatment and care services; 52% experienced delays of 30 days or more. Telemedicine was considered available, but not accessible to patients (37%) and a majority (76%) of patients faced challenges with electronic prescriptions. Patients were not likely to receive a multi-month prescription from their doctor (38%) or successfully fill it at the pharmacy (26%). Conclusions According to responses from patient advocacy organizations, individuals living with noncommunicable diseases in Latin America have faced unique challenges during the COVID-19 pandemic. As countries re-evaluate their health systems, it is critical that chronic diseases are considered so that all can fully realize the right to health.