Perceptions and experiences of prostate cancer patients in a public tertiary hospital in urban South Africa.

ABSTRACTProstate cancer is among the most prevalent forms of cancer worldwide and is reported to have the highest incidence, mortality, and 5-year prevalence rate of all cancers among men living in Africa. Despite this widespread burden in the African continent, little is known about the perspectives and experience of prostate cancer among African men. To further understand experiences among patients living in urban South Africa, we conducted in-depth, semi-structured qualitative interviews to examine the perceptions and experiences of 28 Black African prostate cancer patients receiving treatment at a major tertiary hospital in Johannesburg, South Africa. Our data explored four major areas of patients' experiences with prostate cancer: detection, diagnosis, treatment, and follow-up care. Our results showed that the experience of living with prostate cancer among low-income, Black South African men is a stressful and emotionally painful experience due in part to men feeling that they had insufficient knowledge about their own condition and feeling disempowered or ill-equipped to manage their cancer. These feelings were strongly associated with distrust or dissatisfaction with physicians and the health care system. Resilience factors include social support from family, friends, and religious communities, acceptance of their diagnosis, religion, and positive appraisals of their medical care.

Collaborative Quality Improvement Strategy in Secondary Prevention of Cardiovascular Disease in India: Findings from a Multi-Stakeholder, Qualitative Study using Consolidated Framework for Implementation Research (CFIR).

Background: Cardiovascular disease (CVD) is highly prevalent in India, and little is known about the perception of patients and providers about a package of collaborative quality improvement (C-QIP) strategies consisting of provider-focused electronic health records-decision support system (EHR-DSS), non-physician health workers (NPHW), and patient-facing text messages to enhance the CVD care. Objective: To explore the barriers and enablers of the C-QIP strategy from the perspective of providers, health administrators, patients, and care givers in India. Methods: We conducted a qualitative study using the consolidated framework for implementation research (CFIR) to understand the challenges and facilitators of implementing C-QIP strategy to enhance CVD care in the Indian context. A diverse sample of 38 physicians, 14 non-physician health workers (nurses, pharmacists), 4 health administrators, and 16 patients and their caregivers participated in semi-structured interviews. All interviews were audio-recorded, transcribed, translated, anonymised, and coded using MAXQDA software. We used the framework method and CFIR domains to analyze the qualitative data. Results: Barriers perceived from providers' and health administrators' perspectives in providing quality CVD care were high patient volume, physician burnout, lack of robust communication or referral system, paucity of electronic health records, lack of patient counsellors, polypharmacy, poor patient adherence to medications, and lack of financial incentives. Low health literacy, high cost of treatment, misinformation bias, and difficulty in maintaining lifestyle changes were barriers from patients' perspectives. The CFIR identified key enablers for the implementation of C-QIP such as standardized treatment protocol, reduced medication errors, improved physician-patient relationships, and enhanced patient self-care through trained and supported NPHW. Barriers included: heterogenous healthcare settings, diverse patient groups and comorbidities, associated costs of care and interoperability, confidentiality, and data privacy issues around the use of EHR-DSS. Conclusion: Strategies to enhance CVD care must be low-cost, culturally acceptable, and integrated into existing care pathways.

A mixed-methods, population-based study of a syndemic in Soweto, South Africa.

A syndemic has been theorized as a cluster of epidemics driven by harmful social and structural conditions wherein the interactions between the constitutive epidemics drive excess morbidity and mortality. We conducted a mixed-methods study to investigate a syndemic in Soweto, South Africa, consisting of a population-based quantitative survey (N = 783) and in-depth, qualitative interviews (N = 88). We used ethnographic methods to design a locally relevant measure of stress. Here we show that multimorbidity and stress interacted with each other to reduce quality of life. The paired qualitative analysis further explored how the quality-of-life impacts of multimorbidity were conditioned by study participants' illness experiences. Together, these findings underscore the importance of recognizing the social and structural drivers of stress and how they affect the experience of chronic illness and well-being.

Health system experiences of breast cancer survivors in urban South Africa.

BACKGROUND: Breast cancer is the most common cancer globally and among South African women. Women from socioeconomically disadvantaged South African communities more often present later and receive total mastectomy compared to those from more affluent communities who have more breast conserving surgery (which is less invasive but requires mandatory radiation treatment post-operatively). Standard chemotherapy and total mastectomy treatments are known to cause traumatizing side effects and emotional suffering among South African women; moreover, many women face limited communication with physicians and psychological support. OBJECTIVE: This article investigates the experiences of women seeking breast cancer treatment at the largest public hospital in South Africa. METHODS: We interviewed 50 Black women enrolled in the South African Breast Cancer Study to learn more about their health system experiences with detection, diagnosis, treatment, and follow-up care for breast cancer. Each interview was between 2-3 hours, addressing perceptions, experiences, and concerns associated with breast cancer and comorbidities such as HIV and hypertension. RESULTS: We found most women feared diagnosis, in part, because of the experience of chemotherapy and physical mutilation related to mastectomy. The importance of social support from family, religion, and clinical staff was fundamental for women coping with their condition and adhering to treatment and medication. CONCLUSIONS: These findings exemplify how interventions might promote early detection of breast cancer and better adherence to treatment. Addressing community perceptions of breast cancer, patient needs and desires for treatment, structural barriers to intensive therapies, and the burden of invasive treatments are imperative next steps for delivering better breast cancer care in Soweto and other resource-constrained settings.

Comorbid Suffering: Breast Cancer Survivors in South Africa.

Cycles of chronic illness are unpredictable, especially when multiple conditions are involved, and that instability can transform "normal" everyday life for individuals and their families. This article employs a theory of "comorbid suffering" to interpret how multiple concurrent diagnoses produce webs of remarkable suffering. We collected 50 life stories from breast cancer survivors enrolled in the South Africa Breast Cancer Study. We present three women's narratives who grapple with comorbid suffering and illness-related work, which arise interpersonally when comorbid illnesses affects social interactions. We found that women strive to create a balance between living with comorbid suffering and continuously performing routine activities amid treatment. Discrimination and isolation were underpinned by women's fear of being rejected by their families or how their illnesses created social distance between family members and the wider community. This study therefore illustrates how comorbid suffering requires intensive family commitments amid and beyond illness.

Cancer, chemotherapy, and HIV: Living with cancer amidst comorbidity in a South African township.

Cancer is on the rise in Sub-Saharan Africa. In South Africa, where cancer detection, intervention, and care are available for many citizens, cancer is poorly detected and understood among politically and economically marginalized communities in rural and urban centers. These trends are reflected in a history of systematic marginalization of such contexts from public resources, including education and health care, stemming from racism and wealth inequity. This article investigates how Black South Africans residing in Soweto, a township of Johannesburg, perceive and experience breast and prostate cancers amidst multiple, concurrent medical conditions. We used convenience sampling to recruit 80 study participants already enrolled in longitudinal studies of breast and prostate cancers at a tertiary hospital in Soweto between June and August 2017. This included 50 women diagnosed with breast cancer and 30 men diagnosed with prostate cancer; three-quarters of the sample had two or more comorbidities, including HIV, hypertension, diabetes, anxiety, and others. Many described sickness in terms of any physical ill-health that affected daily routines, but rarely was it associated exclusively with a specific disease. Men and women described more fear associated with cancer than HIV or hypertension-two of the most common diseases. We found that this may be in part a reflection of how people feared and demonized their cancer diagnoses, calling it "a demon!", and framing cancer through the trauma of aggressive treatments like chemotherapy ("the red devil!") and physical disfiguration from mastectomy. In contrast, men's prostate cancer treatments were often hormonal therapy and men associated cancer to a normal side effect of aging. Intervening in how people think about cancer may improve how people live well with the condition amidst other cascading social and health problems they face.

Idioms of resilience among cancer patients in urban South Africa: An anthropological heuristic for the study of culture and resilience.

Despite the large body of research on idioms of distress in anthropology and transcultural psychiatry, few scholars have examined the concepts that people use to describe social and psychological resilience. The experience of social and psychological resilience is embedded in and shaped by social, political, and economic contexts-much like the factors that shape idioms of distress. As resilience literature more broadly has adopted a socio-ecological rather than trait-based approach, anthropology has much to contribute. This article investigates what idioms of resilience and cultural scripts emerge among low-income patients with cancer residing in Soweto, a peri-urban neighborhood in Johannesburg, South Africa. We conducted 80 life history interviews to better understand what social and psychological factors led some people to thrive more than others despite extraordinary adversity. We describe one idiom of resilience, acceptance (ukwamukela in isiZulu), and three broader themes of resilience that emerged from life history narrative interviews (social support, religious support, and receiving medical care). We also present two examples from study participants that weave these concepts together. Our findings suggest that rarely is one form of resilience experienced in isolation. A focus on idioms of resilience can help chart the complex dimensions of acceptance and the dynamic social, religious, political, and temporal factors that mediate both suffering and resilience within individuals and communities.

How to Fail a Scale: Reflections on a Failed Attempt to Assess Resilience.

How we interpret concepts from suffering to survival has been historically debated in the field of anthropology, transcultural psychiatry, and global mental health. These debates have centered on the notion that such concepts are cross-culturally reproducible, although scholars who work the boundaries of culture, medicine, and psychiatry often triangulate methods from internationally standardized scales to various interpretive methods from participant observation to narrative. This article considers resilience, as opposed to suffering, as the subject of a reproducible entity by discussing the failure of an attempt to capture resilience via an internationally reputed scale called the "Resilience Scale for Adults" among cancer patients in urban South Africa. Our effort to utilize the internationally validated scale, and our attempt to draw on ethnographic and interview work to translate this scale to a locally relevant entity failed due to linguistic, cultural, and practical issues. In brief, the attempt failed because our resilience scale was too long, syntactically ambiguous, and culturally inappropriate. We write this article to spur a larger conversation about evaluating resilience from scale to ethnography, and how the concept and measurement of resilience might figure into fields of anthropology and medicine.

System level approaches for mainstreaming tobacco control into existing health programs in India: Perspectives from the field.

INTRODUCTION: India is the second largest consumer of tobacco in the world, and varieties of both smoked and smokeless tobacco products are widely available. The national program for tobacco control is run like a vertical stand-alone program. There is a lack of understanding of existing opportunities and barriers within the health programs that influence the integration of tobacco control messages into them. The present formative research identifies such opportunities and barriers. METHODS: We conducted a multi-step, mixed methodological study of primary care personnel and policy-makers in two Indian states of Andhra Pradesh and Gujarat. The primary purpose of our study was to investigate health worker and policy-maker perceptions on the integration of tobacco control intervention. We systematically collected data in three steps: In Step I, we conducted in-depth interviews (IDIs) and focus group discussions with primary care health personnel, Step II consists of a quantitative survey among health care providers (n = 1457) to test knowledge, attitudes and practices in tobacco control and Step III we conducted 75 IDIs with program heads and policy-makers to evaluate the relative congruence of their views on integration of the tobacco control program. RESULTS: Majority of the health care providers recognized tobacco use as a major health problem. There was a general consensus for the need of training for effective dissemination of information from health care providers to patients. Almost 92% of the respondents opined that integration of tobacco control with other health programs will be highly effective to downscale the tobacco epidemic. CONCLUSIONS: Our findings suggest the need for integration of tobacco control program into existing health programs. Integration of tobacco control strategies into the health care system within primary and secondary care will be more effective and counseling for tobacco cessation should be available for population at large.

Depression among diabetic women in urban centers in Mexico and the United States of America: a comparative study / Depresión en mujeres diabéticas de los centros urbanos de México y los Estados Unidos: un estudio comparativo

OBJECTIVE: To compare the prevalence and patterns of depressive symptoms among women with type 2 diabetes in Puebla, Mexico, and Chicago, United States. METHODS: Two cross-sectional studies were conducted independently, in Puebla (September 2010-March 2011) and in Chicago (January-July 2010). Depression symptomatology was evaluated in a random sample of 241 women self-reporting type 2 diabetes in Puebla and a convenience sample of 121 women of Mexican descent seeking care for type 2 diabetes in Chicago. Depressive symptomatology was measured by the Center for Epidemiologic Studies Depression Scale administered in either English or Spanish. Women were similarly socioeconomically disadvantaged with low education levels in both locations. RESULTS: The Chicago sample of women reported higher levels of depression than the Puebla sample (38% versus 17%, P < 0.0001). Among those with comorbid depression and diabetes in both sites, minimal variations in symptoms were observed. Depressive symptoms, specifically the subjective element (feeling sad) and symptoms associated with diabetes (fatigue and sleep problems) were heightened in both groups. More frequent reporting of "feeling fearful" was statistically significant in Puebla. CONCLUSIONS: Despite a higher prevalence of depression among Mexican immigrant women with diabetes in the United States compared to Mexico, there was little variation in their depressive symptoms, regardless of residence. However, women in Mexico did report a higher incidence of fear. Screening for depression in patients with diabetes should take into account symptoms of fatigue and sleep and the bi-directional relationship of depression and diabetes.

OBJETIVO: Comparar la prevalencia y las características de los síntomas depresivos en mujeres aquejadas de diabetes tipo 2 en Puebla (México) y Chicago (Estados Unidos). MÉTODOS: Se llevaron a cabo independientemente dos estudios transversales, en Puebla (de septiembre del 2010 a marzo del 2011) y en Chicago (de enero a julio del 2010). Se evaluó la sintomatología depresiva en una muestra aleatoria de 241 mujeres con diagnóstico de diabetes de tipo 2 en Puebla, y en una muestra de conveniencia de 121 mujeres de ascendencia mexicana que acudieron en busca de atención de su diabetes de tipo 2 en Chicago. La sintomatología depresiva se midió mediante la Escala de Depresión del Centro de Estudios Epidemiológicos, administrada ya fuera en inglés o en español. En ambas ubicaciones, las mujeres pertenecían a niveles socioeconómicos desfavorecidos de forma similar y sus niveles de educación eran bajos. RESULTADOS: Se notificaron niveles más altos de depresión en la muestra de mujeres de Chicago que en la muestra de Puebla (38 frente a 17%, P < 0,0001). En ambos sitios, se observaron variaciones mínimas en los síntomas de las mujeres que padecían depresión y diabetes de manera concomitante. Los síntomas depresivos, específicamente el elemento subjetivo (sentirse triste) y los síntomas asociados con la diabetes (cansancio y problemas de sueño), aparecían intensificados en ambos grupos. La mayor frecuencia de la notificación de "sentirse temerosa"encontrada en Puebla fue estadísticamente significativa. CONCLUSIONES: A pesar de una mayor prevalencia de depresión en las mujeres mexicanas con diabetes inmigrantes en los Estados Unidos, en comparación con las que vivían en México, hubo poca variación en los síntomas depresivos, independientemente de la residencia. Sin embargo, las mujeres residentes en México notificaron una mayor incidencia de temor. El tamizaje de la depresión en pacientes con diabetes debe tener en cuenta los síntomas de cansancio y de trastornos del sueño, y la relación bidireccional entre la depresión y la diabetes.