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"medical advocacy"
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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.
Journal Article
Health Advocacy, Inc. : how pharmaceutical funding changed the breast cancer movement
\"Today, most patient groups in Canada are funded by the pharmaceutical industry, raising an important ethical question: Do alliances between patient organizations and corporate sponsors ultimately lead to policies that are counter to the public interest? In this examination of Canada's breast cancer movement from 1990 to 2010, health activist, scholar, and cancer survivor Sharon Batt investigates the relationship between patient advocacy groups and the pharmaceutical industry--and the hidden implications of pharma funding for health policy. Health Advocacy, Inc. dissects the alliances between the companies that sell pharmaceuticals and the individuals who use them, drawing links between neoliberalism and corporate financing, and the ensuing threat to the public health care system. Batt combines archival analysis, interviews with advocacy and industry representatives, and personal observation to reveal how a reduction in state funding drove patient groups to form partnerships with the private sector. The resulting power imbalance continues to challenge the groups' ability to put patients' interests ahead of those of the industry. Batt's conclusion is unsettling: a once-vibrant movement that encouraged democratic participation in the development of health policy now eerily echoes the demands of the pharmaceutical industry. This thorough account of the shift from grassroots advocacy to Big Pharma partnership defines the struggles and stakes of activism in public health today.\"-- Provided by publisher.
Book
Medical advocacy among African-American women diagnosed with breast cancer: from recipient to resource
Purpose
Medical advocacy at multiple levels (self, community/interpersonal, national/public health interest) may be helpful to address the disproportionate burden of breast cancer African-American women encounter. Little, however, is known about the interplay of medical advocacy at different levels.
Methods
We analyzed qualitative data from two studies focused on the psychosocial experiences of breast cancer among 38 African-American women living in Western Washington State.
Results
Emergent themes suggested that survivors received community/interpersonal advocacy from different members of social networks in the form of social support (appraisal, emotional, informational, instrumental). Survivors indicated that receiving this support was associated with greater self-advocacy in terms of their own care experiences, as well as greater community/interpersonal advocacy on their part as resources to other women diagnosed with breast cancer, their family, friends, and larger communities.
Conclusion
Our findings suggest that community/interpersonal advocacy, including providing different types of support, may lead to improved self-advocacy as well as health-protective impacts for the networks in which survivors are embedded. Future quantitative research is warranted to support these findings and assess how this interplay is associated with improved outcomes among this marginalized and resilient population.
Journal Article
Saving babies? : the consequences of newborn genetic screening
It has been close to six decades since Watson and Crick discovered the structure of DNA and more than ten years since the human genome was decoded. Today, through the collection and analysis of a small blood sample, every baby born in the United States is screened for more than fifty genetic disorders. Though the early detection of these abnormalities can potentially save lives, the test also has a high percentage of false positives—inaccurate results that can take a brutal emotional toll on parents before they are corrected. Now some doctors are questioning whether the benefits of these screenings outweigh the stress and pain they sometimes produce. In Saving Babies?, Stefan Timmermans and Mara Buchbinder evaluate the consequences and benefits of state-mandated newborn screening—and the larger policy questions they raise about the inherent inequalities in American medical care that limit the effectiveness of this potentially lifesaving technology.
Drawing on observations and interviews with families, doctors, and policy actors, Timmermans and Buchbinder have given us the first ethnographic study of how parents and geneticists resolve the many uncertainties in screening newborns. Ideal for scholars of medicine, public health, and public policy, this book is destined to become a classic in its field.
eBook
Medical Advocacy and Supportive Environments for African-Americans Following Abnormal Mammograms
African-American women experience disproportionately adverse outcomes relative to non-Latina White women after an abnormal mammogram result. Research has suggested medical advocacy and staff support may improve outcomes among this population. The purpose of the study was to understand reasons African-American women believe medical advocacy to be important and examine if and how staff can encourage and be supportive of medical advocacy. A convenience-based sample of 30–74-year-old women who self-identified as African-American/Black/of African descent and who had received an abnormal mammogram result was recruited from community-based organizations, mobile mammography services, and the local department of health. This qualitative study included semi-structured interviews. Patients perceived medical advocacy to be particularly important for African-Americans, given mistrust and discrimination present in medical settings and their own familiarity with their bodies and symptoms. Respondents emphasized that staff can encourage medical advocacy through offering information in general in a clear, informative, and empathic style. Cultural competency interventions that train staff how to foster medical advocacy may be a strategy to improve racial disparities following an abnormal mammogram.
Journal Article
Clinical Ethics and Patient Advocacy
In recent years, the rights of patients have assumed a more pivotal role in international discussion. Stricter laws on the protection of patients place greater priority on the perspective and the status of patients. The purpose of this study is to emphasize ethical aspects in communication, the role of patient advocates as contacts for the concerns and suggestions of patients, and how many problems of ethics disappear when communication is highlighted. We reviewed 680 documented cases of consultation in a 10-year period of patient advocates’ activity at a big German university hospital with 1,300 beds. On the basis of this extensive material, the article will focus on the intersection of the advocate’s work with the problems of patients in hospitals. Deficits in the level of communication between health care professionals and patients were frequently uncovered. Patients primarily complain about the lack of dialogue and empathy. Middle-aged patients consulted the patients’ advocate disproportionately more often. Measured against this baseline, the group of 65 and older complained less frequently. Besides complaints the advocate was asked in more than one-third of all cases for information about medical matters, hospital regulations or administrative problems. Patients obviously see the advocate as a well-connected and ideally unbiased contact person for uncertainties concerning their malady or a potential stay in hospital. Those seeking help often set hope in the information given by the voluntary patient representative. It should be highly recommended for every German hospital to establish the position of a patient advocate. Furthermore, patients can profit from regular exchange between the advocate and the Ethics Committee, also, to help ensure that their rights are taken into account and implemented in an ethically desirable context.
Journal Article
The Transtheoretical Model in Intimate Partner Violence Victimization: Stage Changes Over Time
The transtheoretical model of behavior change (TTM) has been extended to describe the process of change in victims of intimate partner violence (IPV); however, it has not been validated over time or in a population of women experiencing IPV who are not currently in shelter. This article examines the process of change in IPV victims longitudinally and identifies factors that may relate to staging and stage progression. Fifty-three women were enrolled on presentation to an emergency department for health care treatment and completed follow-up at 3 to 4 months. Measures of TTM staging, use of community resources, ongoing abuse, mental health, and social support were collected. Cluster analyses were conducted, and descriptive summaries of clusters and significant demographic, abuse, and outcome variables related to cluster membership are presented. A five-cluster solution was selected on the basis of parsimony, theory, and overall coherence with the data. Forward progression through the stages over time was related to both the use of community resources and ending the IPV relationship.
Journal Article