Little progress has been made over the last 40 years to eliminate the racial/ethnic differences in incidence, morbidity, avoidable suffering, and mortality from cancer that result from factors beyond genetic differences. More effective strategies to promote equity in access and quality care are urgently needed because the changing demographics of the United States portend that this disparity will not only persist but significantly increase. Such suffering is avoidable. The authors posit that culture is a prime factor in the persistence of health disparities. However, this concept of culture is still poorly understood, inconsistently defined, and ineffectively used in practice and research. The role of culture in the causal pathway of disparities and the potential impact of culturally competent cancer care on improving cancer outcomes in ethnic minorities has, thus, been underestimated. In this article, the authors provide a comprehensive definition of culture and demonstrate how it can be used at each stage of the cancer care continuum to help reduce the unequal burden of cancer. The authors conclude with suggestions for clinical practice to eliminate the disconnection between evidence-based, quality, cancer care and its delivery to diverse population groups.
Palliative care is gaining acceptance across the world. However, even when palliative care resources exist, both the delivery and distribution of services too often are neither equitably nor acceptably provided to diverse population groups. The goal of this study was to illustrate tensions in the delivery of palliative care for diverse patient populations to help clinicians to improve care for all. We begin by defining and differentiating culture, race, and ethnicity, so that these terms-often used interchangeably-are not conflated and are more effectively used in caring for diverse populations. We then present examples from an integrative literature review of recent research on culture and palliative care to illustrate both how and why varied responses to pain and suffering occur in different patterns, focusing on four areas of palliative care: the formation of care preferences, communication patterns, different meanings of suffering, and decision-making processes about care. For each area, we provide international and multiethnic examples of variations that emphasize the need for personalization of care and the avoidance of stereotyping beliefs and practices without considering individual circumstances and life histories. We conclude with recommendations for improving palliative care research and practice with cultural perspectives, emphasizing the need to work in partnerships with patients, their family members, and communities to identify and negotiate culturally meaningful care, promote quality of life, and ensure the highest quality palliative care for all, both domestically and internationally.
The clinical approach to patients with amyotrophic lateral sclerosis (ALS) has been largely modified by the identification of novel genes, the detection of gene mutations in apparently sporadic patients, and the discovery of the strict genetic and clinical relation between ALS and frontotemporal dementia (FTD). As a consequence, clinicians are increasingly facing the dilemma on how to handle genetic counselling and testing both for ALS patients and their relatives. On the basis of existing literature on genetics of ALS and of other late-onset life-threatening disorders, we propose clinical suggestions to enable neurologists to provide optimal clinical and genetic counselling to patients and families. Genetic testing should be offered to ALS patients who have a first-degree or second-degree relative with ALS, FTD or both, and should be discussed with, but not offered to, all other ALS patients, with special emphasis on its major uncertainties. Presently, genetic testing should not be proposed to asymptomatic at-risk subjects, unless they request it or are enrolled in research programmes. Genetic counselling in ALS should take into account the uncertainties about the pathogenicity and penetrance of some genetic mutations; the possible presence of mutations of different genes in the same individual; the poor genotypic/phenotypic correlation in most ALS genes; and the phenotypic pleiotropy of some genes. Though psychological, social and ethical implications of genetic testing are still relatively unexplored in ALS, we recommend multidisciplinary counselling that addresses all relevant issues, including disclosure of tests results to family members and the risk for genetic discrimination
Cultural competence in oncology requires the acquisition of specific knowledge, clinical skills, and attitudes that facilitate effective cross-cultural negotiation in the clinical setting, thus, leading to improved therapeutic outcomes and decreased disparities in cancer care. Cultural competence in oncology entails a basic knowledge of different cultural attitudes and practices of communication of the truth and of decision-making styles throughout the world. Cultural competence always presupposes oncology professionals' awareness of their own cultural beliefs and values. To be able to communicate with cancer patients in culturally sensitive ways, oncologists should have knowledge of the concept of culture in its complexity and of the risks of racism, classism, sexism, ageism, and stereotyping that must be avoided in clinical practice. Oncologists should develop a sense of appreciation for differences in health care values, based on the recognition that no culture can claim hegemony over others and that cultures are evolving under their reciprocal influence on each other. Medical schools and oncology training can teach communication skills and cultural competence, while fostering in all students and young doctors those attitudes of humility, empathy, curiosity, respect, sensitivity, and awareness that are needed to deliver effective and culturally sensitive cancer care.
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