BackgroundPatients receiving complementary and alternative medicine (CAM) therapies often report shifts in well-being that go beyond resolution of the original presenting symptoms. We undertook a research program to develop and evaluate a patient-centered outcome measure to assess the multidimensional impacts of CAM therapies, utilizing a novel mixed methods approach that relied upon techniques from the fields of anthropology and psychometrics. This tool would have broad applicability, both for CAM practitioners to measure shifts in patients' states following treatments, and conventional clinical trial researchers needing validated outcome measures. The US Food and Drug Administration has highlighted the importance of valid and reliable measurement of patient-reported outcomes in the evaluation of conventional medical products. Here we describe Phase I of our research program, the iterative process of content identification, item development and refinement, and response format selection. Cognitive interviews and psychometric evaluation are reported separately.MethodsFrom a database of patient interviews (n = 177) from six diverse CAM studies, 150 interviews were identified for secondary analysis in which individuals spontaneously discussed unexpected changes associated with CAM. Using ATLAS.ti, we identified common themes and language to inform questionnaire item content and wording. Respondents' language was often richly textured, but item development required a stripping down of language to extract essential meaning and minimize potential comprehension barriers across populations. Through an evocative card sort interview process, we identified those items most widely applicable and covering standard psychometric domains. We developed, pilot-tested, and refined the format, yielding a questionnaire for cognitive interviews and psychometric evaluation.ResultsThe resulting questionnaire contained 18 items, in visual analog scale format, in which each line was anchored by the positive and negative extremes relevant to the experiential domain. Because of frequent informant allusions to response set shifts from before to after CAM therapies, we chose a retrospective pretest format. Items cover physical, emotional, cognitive, social, spiritual, and whole person domains.ConclusionsThis paper reports the success of a novel approach to the development of outcome instruments, in which items are extracted from patients' words instead of being distilled from pre-existing theory. The resulting instrument, focused on measuring shifts in patients' perceptions of health and well-being along pre-specified axes, is undergoing continued testing, and is available for use by cooperating investigators.
This study identifies a knowledge gap regarding ACP among Latina women with cancer diagnosis living in Central Florida, in the USA. Differences between the three groups exist as a result of migration/immigration history, family support, education, English language proficiency, income, knowledge gaps, and information ascertained by medical and health professionals. These differences contribute to their readiness, receptiveness, and willingness to engage in documenting a living will, a health care surrogate, and an enduring power of attorney for health decisions.
Rural populations in the United States are faced with a variety of health disparities that complicate access to care. Community health workers (CHWs) and their Spanish-speaking counterparts, promotores de salud, are well-equipped to address rural health access issues, provide education, and ultimately assuage these disparities. In this article, we compare community health workers in the states of Indiana and Texas, based on the results of two separate research studies, in order to (1) investigate the unique role of CHWs in rural communities and (2) understand how their advocacy efforts represent a central form of caregiving. Drawing on ethnographic, qualitative data—including interviews, photovoice, and participant observation—we analyze how CHWs connect structurally vulnerable clients in rural areas to resources, health education, and health and social services. Our primary contribution to existing scholarship on CHWs is the elaboration of advocacy as a form of caregiving to improve individual health outcomes as well as provoke structural change in the form of policy development. Finally, we describe how CHWs became especially critical in addressing disparities among rural populations in the wake of COVID-19, using their advocacy-as-caregiving role that was developed and well-established before the pandemic. These frontline workers are more vital than ever to address disparities and are a critical force in overcoming structural vulnerability and inequities in health in the United States.
Of the estimated 214 million people who have migrated from poorer to richer countries in search of a better life, between 20 and 30 million have migrated on an unauthorized, or "illegal," basis. All have health needs, or will in the future, yet most are denied health care available to citizens and authorized residents. To many, unauthorized im/migrants' exclusion intuitively "makes sense." As scholars of health, social justice, and human rights, we find this logic deeply flawed and are committed to advancing a constructive program of engaged critique. In this commentary, we call on medical anthropologists to claim an active role in reframing scholarly and public debate about this pressing global health issue. We outline four key theoretical issues and five action steps that will help us sharpen our research agenda and translate ourselves for colleagues in partner disciplines and for broader audiences engaged in policymaking, politics, public health, and clinical practice.
Latinas have higher cervical cancer age-adjusted incidence and mortality rates, and present with more advanced disease compared to non-Latino whites. This study used a cross-sectional mixed methods survey design, exploring knowledge, attitudes, and beliefs regarding the human papillomavirus (HPV), the HPV vaccine, and cervical cancer screening with four groups of women (Mexican, Honduran, Puerto-Rican, Anglo American; n=80) attending low-income health clinics along with one group of Latina health care workers (n=17). Data analyses included univariate frequency distributions and one-way ANOVA tests for quantitative data, thematic and content analysis of qualitative data, and cultural consensus analysis using the covariance method to compare groups. Results indicate overall cultural consensus for the five subgroups for both the agree/disagree questions and rankings on cervical cancer risk factors. However, differences were found between Latina women compared to Anglo American patients and health care clinic workers around birth control practices as possible causal factors for cervical cancer. Other findings suggested greater awareness of HPV and the HPV vaccine among Anglo American and Puerto Rican women compared to Mexican and Honduran women. Mexican and Honduran women were less likely to be aware of HPV and the HPV vaccine, and more likely to be uninsured and without a regular health care provider. Results point to the need to assess knowledge, attitudes, and beliefs in specific subgroups experiencing cervical cancer disparities to identify target areas for health education. Study findings will be used to inform the development and pilot testing of health education curriculum modules for cervical cancer prevention.While cervical cancer screening using the Papanicolaou (Pap) smear has resulted in dramatic reductions in cervical cancer incidence and mortality for women in the United States, its benefits have not been equitably distributed through all sociodemographic groups, based on age, socioeconomic and insured/uninsured status, and cultural and racial/ethnic categories (Downs et al. 2008;McDougall et al. 2007;Newmann and Garner 2005; Watson et al. 2008 NIH-PA Author ManuscriptNIH-PA Author Manuscript NIH-PA Author Manuscript such remarkable success, a disproportionate incidence and mortality burden continues to be shouldered by Latinas, including the rural and migrant populations (Howe et al. 2006). Numerous factors have been cited to explain these cancer disparities, including unequal access to health care, lower screening rates, lower adherence to follow-up recommendations, a lack of regular health care provider, lower health literacy, low levels of acculturation, income inequality, immigration status, lower education, cultural beliefs, and additional structural factors (Coronado et al. 2004;Freeman and Wingrove 2005; Hiatt et. al. 2001;Howell et al. 2009;Jacobs et al. 2005;Ramirez et al. 2005;Zambrana et al. 1999). In order to understand cultural factors that might explain cervical cancer disparit...
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