Le narrateur vient de perdre sa mère. Il cherche à conjurer la mort. Beur, enfant de la République, il part à la rencontre de deux figures du passé : le Ghassanide, poète contrarié devenu chef des armées du calife Abd el-Malek, et Maysara, fils d'un porteur d'eau berbère, qui, rebelle dans l'âme, a levé une armée et s'est autoproclamé calife. Quand le roman se referme, le deuil est surmonté. Le narrateur a réussi à réconcilier les trois cultures dont il est issu.
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Objective: Adolescent and young adults' (AYAs) involvement in advance care planning and end-of-life discussions may enhance the decision-making process, reduce stress and improve the patient's quality of life. Given the importance of establishing adequate communication and having culturally-appropriate tools to introduce advance care planning, our paper will describe the cross-cultural adaptation of the advance care planning guide, Voicing My CHOiCES™ in Australia and in Brazil.
Methods: In Brazil, the process involved initially translating the document to Portuguese followed by evaluation by a group of providers and patients (aged 18-39) undergoing cancer treatment. The document was revised based on the feedback received, then back-translated to English and discussed with Voicing My CHOiCES™ 'authors to refine the final version in Portuguese. In Australia, a multi-perspective interview-based study was undertaken with AYA cancer patients/survivors (aged 15-25), siblings, parents, and a range of healthcare providers from the oncology setting, to determine the perceived acceptability of the tool within the Australian clinical context.
Results: These interviews pointed to a variety of recommended adaptations ranging from the aesthetic and linguistic, through to the re-structuring of content within the tool. Adaptations for the Australian setting were then revised in an iterative capacity within several focus groups of AYA participants and healthcare providers.
Conclusions: The processes used in both countries highlight ways to engage youth living with a life-limiting illness in conversations about advance care planning and how to develop culturally-appropriate clinical tools.
Background: Persons of South Asian origin (SAs) are the fastest growing minority group in the United States. Culturally competent care for patients and families of SA origin necessitates an understanding of the cultural factors that affect decision-making for palliative and end-of-life care.
Objective: To better understand health-care providers' perspectives on decision-making among seriously ill persons of SA origin.
Method: Data were collected in a US Midwestern city, predominantly in 2 hospital-based health-care systems along with a few interviews of private practitioners. Researchers conducted a thematic analysis of data. Transcripts were coded individually, coding disagreements resolved through discussion and themes arrived upon by consensus.
Results: Health-care providers reported that numerous factors interact to influence decision-making among SAs. Patient-based factors include education, time spent in the United States, expectations of physician-directed care, and spiritual beliefs. Family-based factors include a norm of family-based decision-making and a complex distribution of decision-making responsibilities among family members. Provider-based factors include challenges reconciling SA and American approaches to decision-making. Community-based factors include negative attitudes and a lack of education regarding palliative care and the potential role of community support in health-care decision-making.
Conclusions: A rich cultural context influences health-care decision-making among seriously ill SAs. An understanding of this context will enhance providers' cultural competence and likely improve services to this growing population.
BACKGROUND: While disparities in end-of-life care have been well-documented, explanations for the persistence of disparities are less clear. This study sought to examine diverse perceptions of end-of-life care, especially regarding how medical professionals can better serve all populations.
OBJECTIVE: To investigate similarities and differences in end-of-life care preferences, across racial and ethnic groups.
DESIGN: This work consists of a qualitative study utilizing in-depth focus group discussions.
SETTING/PARTICIPANTS: Six community-based focus groups were conducted with a total of 39 participants. Two groups were composed of African American participants, 2 had Latino participants, and 2 groups had white participants.
RESULTS: Analysis produced 3 major themes: (1) clear, comprehensive, and culturally relevant provider-patient communication regarding serious illness; (2) provider characteristics and competency; and (3) health system supports and barriers. Although all groups had individuals who expressed a strong preference for direct communication, individuals varied within groups. All groups discussed concerns that the costs of care are high and that financial considerations are given more importance than high-quality care. Groups diverged in their focus on provider characteristics and feelings of marginalization. African American and Latino groups emphasized a desire to match characteristics with providers, and African American groups discussed that their marginalization in the health-care system requires hypervigilance to receive high-quality care.
CONCLUSIONS: Improvements in care would come from acknowledging diversity within groups, provider demonstration of comfort and competence, more effective care coordination, and recruitment of providers who share similar characteristics with the communities they serve.
BACKGROUND: There is little scholarship on culturally safe approaches to palliative care, especially for rural Indigenous clients. Thus, it is important to articulate how cultural safety can be enacted to support rural Indigenous Peoples and communities at end of life. We sought to identify strategies described in existing literature that have potential to deepen our understanding of culturally safe approaches to palliative care within rural and small-town settings in Canada.
METHODS: We searched for peer-reviewed and grey literature about Indigenous palliative care in rural and small-town settings in Canada, United States, New Zealand, and Australia. Medline, CINAHL, and Embase were searched. We thematically analyzed 22 resulting articles to address our interest in culturally safe approaches to palliative care in rural/small-town and on-reserve contexts.
RESULTS: The following themes were extracted from the literature: symbolic or small gestures; anticipating barriers to care; defer to client, family and community; shared decision-Making; active patient and family involvement; respectful, clear, and culturally appropriate communication; community ownership of services; empower cultural identity, knowledge, and traditions; and, policy.
DISCUSSION: Culturally competent practices can improve Indigenous palliative care services; however, they do not result in decolonized care. Strategies include: symbolic or small gestures; anticipating barriers to access; deferring to the client, family, and community members; and, collective decision making and family involvement. Culturally safe approaches contribute to institutional or organizational change and decolonized care. Strategies include: involvement of patient and family in service planning; reflection about individual and systemic racism; community ownership of services and; recognizing distinct Worldviews that shape care.
CONCLUSIONS: Culturally safe strategies invite decolonization of care through awareness of colonialism, racism, and discrimination. They invite commitment to building partnerships, power sharing, and decision-making in the delivery of care. Culturally competent activities may catalyze the adoption of a cultural safety framework; however, mislabeling of cultural competency as cultural safety may contribute to organizational inaction and a watering down of the spirit of cultural safety.
Purpose: Refugees may be at risk of experiencing a complicated form of bereavement. As yet, however, the nosological status of this putative category across cultures remains in question. We apply qualitative and quantitative methods to investigate the manifestations, prevalence, factorial structure and psychosocial correlates of complicated bereavement amongst refugees from West Papua, a population with no past exposure to western concepts of grief or to formal mental health services.
Methods: Qualitative methods (focus groups and informant interviews) were used to identify cultural expressions of complicated bereavement derived from international classification systems, that is, DSM 5 persistent complex bereavement disorder (PCBD) and ICD-11 prolonged grief disorder (PGD) in developing a structured interview applied by trained field workers. Participants were adult West Papuan refugees and their offspring recruited from households (n = 486, response 85.8%) across nine villages in a remote town in Papua New Guinea.
Results: The qualitative data obtained from focus groups (n = 20) and informant interviews (n = 4) with local psychiatrists supported the cultural validity of complicated bereavement. 16% (n = 78) of the sample met criteria for PCBD based on DSM-5 criteria and 103 (21%) met criteria for PGD based on ICD-11 criteria. Confirmatory factor analysis yielded a six-factor model of complicated bereavement with a moderately good fit to the data. The model included dimensions of anger/negative appraisal (AN), avoidance/giving up, estrangement from others, and confusion and diminished identity. In contrast, the DSM-5 three-factor model and the ICD-11 two-factor model each yielded a poor fit. Cumulative traumatic losses (ß = 0.16, P = 0.03), duration since displacement [(ß = 0.10, P = 0.02)] and postmigration living difficulties (ß = 0.20, P = 0.01) were associated with an aggregated index of complicated bereavement, supporting the concurrent validity of the structure identified.
Conclusions: Culture and exposure to persecution and displacement may contribute to the content and configuration of the complicated bereavement reaction, an issue that requires recognition in international classification systems and clinical practice.
BACKGROUND: Noncancer patients with life-limiting diseases often receive more intensive level of care in their final days of life, with more cardiopulmonary resuscitation performed and less do-not-resuscitate (DNR) orders in place. Nevertheless, death is still often a taboo across Chinese culture, and ethnic disparities could negatively affect DNR directives completion rates.
OBJECTIVES: We aim to explore whether Chinese noncancer patients are willing to sign their own DNR directives in a palliative specialist clinic, under a multidisciplinary team approach.
DESIGN: Retrospective chart review of all noncancer patients with life-limiting diseases referred to palliative specialist clinic at a tertiary hospital in Hong Kong over a 4-year period.
RESULTS: Over the study period, a total of 566 noncancer patients were seen, 119 of them completed their own DNR directives. Patients had a mean age of 74.9. Top 3 diagnoses were chronic renal failure (37%), congestive heart failure (16%), and motor neuron disease (11%). Forty-two percent of patients signed their DNR directives at first clinic attendance. Most Chinese patients (76.5%) invited family caregivers at DNR decision-making, especially for female gender (84.4% vs 69.1%; P = .047) and older (age >75) age group (86.2% vs 66.7%; P = .012). Of the 40 deceased patients, median time from signed directives to death was 5 months. Vast majority (95%) had their DNR directives being honored.
CONCLUSION: Health-care workers should be sensitive toward the cultural influence during advance care planning. Role of family for ethnic Chinese remains crucial and professionals should respect this family oriented decision-making.
INTRODUCTION: The purpose of this study was to describe basic palliative care from the acute care nurses' perspective with consideration for culturally diverse populations. Participants focused their responses based on their experiences with Hmong patients. The concept of cultural safety was explored to improve basic palliative care practice in acute care settings.
METHOD: A qualitative approach was utilized. Thirty-four nurses participated in either focus group or individual interviews.
RESULTS: Assisting tradition, understanding culture, and managing language barriers were identified as themes unique to providing basic palliative care to Hmong patients.
DISCUSSION: Nurses experienced uncertainty and inadequacy of resources when caring for patients from a Hmong background. Nurses also recognized the strong family ties in this specific population and the importance of supporting tradition while in the hospital. Utilizing Wood and Schwass' framework of cultural safety could guide nurses providing basic palliative care to Hmong patients and other culturally diverse patients.
This study explored the context effect in the relationship between capital (income, social support, and cultural capital) and changes in global meaning. We interviewed a sample of 352 bereaved Chinese elders from 18 communities in rural China and conducted hierarchical linear modeling for data analysis. The effects of social support and cultural capital in terms of traditional Chinese culture on changes in global meaning differed across communities. Social support earned its credit in buffering function against bereavement, whereas traditional Chinese culture posed a risk of elevating negative global meaning. More social support and positive global meaning are reliable predictors for enhancing the psychological health of bereaved elders.
Tous, vous avez déjà pu observer comment soin et amour sont accolés dans nos discours.
Et je vous arrive avec cette grosse question de la limite ! Vous avez désigné un tant soit peu les limites d'une personne, d'un groupe, d'une institution ou d'un mouvement ne signifie pas qu'on ne les aime pas. Au contraire, prendre soin de désigner les limites serait l'une des manières d'aimer, et de justement prendre soin. Mais pour prendre soin, l'amour ne suffit pas : il faut lui adjoindre de la justice, pusique le soin se déploie dans une organisation. Et avec la justice viennent les délimitations. J'en désignerai donc quelques-unes.
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Cet article vise à présenter la culture philanthropique en exposant brièvement son histoire et sa situation au Québec, ainsi que ses principales caractéristiques. Nous mettons de l'avant des manifestations concrètes de cette culture en prenant appui sur la Maison Michel-Sarrazin, où s'actualise le don philanthropique, et l'Institut Mallet, qui a pour mission son avancement.
Using a cross-sectional study, this article addresses end-of-life (EOL) care for older Iranian-American adults. The purposes are twofold: (a) to explore participantsâ€™ preferences for home or hospital care in the event they face EOL conditions and (b) to learn how participants prefer to communicate these preferences. Results showed that about half of the 130 participants had communicated their EOL care preferences through written documents and/or verbal discussions. A set of factors predicted the preferences ( 2(9) = 17.42, p < .042) and communications ( 2(9) = 19.54, p = .021). Regression models indicated that higher scores of social support (p = .013) and greater numbers of cohabitants (p = .021) were associated with a preference for home care, and experience of a loved oneâ€™s death was associated with participants being willing to communicate their preferences for type of care (p = .015). This study can bridge the gap between culturally diverse older adultsâ€™ preferences and types of EOL care they ultimately receive.
BACKGROUND: The UK older population is becoming increasingly ethnically diverse, with a projected eight-fold increase in dementia among black, Asian and minority ethnic communities over the next 30 years, compared with a two-fold increase in white British people with dementia.
AIMS: This Admiral Nurse case study explores an understanding of culture and ethnic background in families' experiences of dementia and caring using a culturagram assessment framework.
FINDINGS: The culturagram enabled a more comprehensive assessment, so that care delivery was sensitive to the specific cultural and ethnicity issues in a relationship-centred approach to dementia care.
CONCLUSION: An understanding of the cultural influences in light of a diagnosis of dementia were essential in developing a care package that met the needs of all family members.
Objectif: Lâ€™article documente le vécu et les représentations sous-jacentes aux soins cliniques pour comprendre le suivi des protocoles ainsi que lâ€™adaptation des soignés et leurs familles.
Matériel et méthodes: Quatre études de cas et 12 entretiens avec les soignants dont huit entretiens avec le personnel au niveau clinique et quatre entretiens avec des acteurs de soins en dehors de la biomédecine ont été menés. Pour lâ€™intelligibilité de notre propos, lâ€™approche constructiviste sâ€™est avérée la mieux appropriée.
Résultats: Au début de toute maladie les familles sâ€™en font une représentation au travers des modèles explicatifs de leurs sociocultures et leurs propres expériences qui oscillent sur des pôles naturaliste et spiritualiste. Par conséquent, le recours à plusieurs avis médicaux est lâ€™attitude qui sâ€™en dégage. Au Cameroun, lâ€™éducation thérapeutique des patients qui permet de socialiser les soignés et leurs familles aux situations cliniques est davantage un échange informatif dépendant des dimensions affectives, cognitives ou conatives de la relation soignant/soigné. Elle ne devient efficiente quâ€™au moment où lâ€™éducation culturelle du thérapeute lui permet de desceller les non-dits et les médiateurs de cette relation, afin dâ€™établir des échanges négociés, partagés et mutuellement compris.
Conclusion: La maîtrise et le suivi assidu des protocoles thérapeutiques dans les soins palliatifs pédiatriques en Afrique subsaharienne interpellent le rôle du médecin qui sans être un spécialiste des cultures, se doit de ne pas faire fi des médecines parallèles qui sont à la portée de leurs patients et leurs familles et de collaborer avec eux dans les prises de décisions liées à leurs orientations thérapeutiques.
BACKGROUND: To provide preference-sensitive care, we propose that clinicians might routinely inquire about their patients' bucket-lists and discuss the impact (if any) of their medical treatments on their life goals.
METHODS: This cross-sectional, mixed methods online study explores the concept of the bucket list and seeks to identify common bucket list themes. Data were collected in 2015-2016 through an online survey, which was completed by a total of 3056 participants across the United States. Forty participants who had a bucket list were identified randomly and used as the development cohort: their responses were analyzed qualitatively using grounded theory methods to identify the six key bucket list themes. The responses of the remaining 3016 participants were used for the validation study. The codes identified from the development cohort were validated by analyses of responses from 50 randomly drawn subjects from the validation cohort. All the 3016 validation cohort transcripts were coded for presence or absence of each of the six bucket list themes.
RESULTS: Around 91.2% participants had a bucket list. Age and spirituality influence the patient's bucket-list. Participants who reported that faith/religion/spirituality was important to them were most likely (95%) to have a bucket list compared with those who reported it to be unimportant (68.2%), 2 = 37.67. Six primary themes identified were the desire to travel (78.5%), desire to accomplish a personal goal (78.3%), desire to achieve specific life milestones (51%), desire to spend quality time with friends and family (16.7%), desire to achieve financial stability (24.3%), and desire to do a daring activity (15%).
CONCLUSIONS: The bucket list is a simple framework that can be used to engage patients about their healthcare decision making. Knowing a patient's bucket list can aid clinicians in relating each treatment option to its potential impact (if any) on the patient's life and life goals to promote informed decision making.
PURPOSE: The purpose of our study was to clarify any difficulties or problems that exist in Japanese healthcare sites regarding the selection of death anxiety as a nursing diagnosis.
METHODS: This study was a qualitative, inductive research design. The semistructured interviews were conducted on the participants who were nurses and had 3 or more years of clinical experience in Japan.
RESULTS: Results showed four categories: "The Japanese have a culture of avoiding death," "It is extremely difficult to match diagnostic indicators and related factors with specific patient cases," "Other diagnoses exist that are effective and enable proactive intervention," and "The definition of death anxiety and the meaning of its diagnostic indicators are unintelligible."
DISCUSSION: It is thought that nursing diagnoses that reflect specific cultural backgrounds require definitions appropriate to each country and appropriate revisions to diagnostic indicators.
BACKGROUND: End-of-life (EOL) care in neonatal intensive care units (NICUs) can vary depending on religious beliefs of health care providers and families as well as the sociocultural environment. Although guidelines exist for EOL care in NICUs, most are based on Western studies, and little is known about such care in Asian countries, which have different religious and social background.
OBJECTIVE: This review synthesized empirical research to reveal the state of the science on infant EOL care in Asian countries.
DESIGN: This was an integrative review.
SETTING/SUBJECTS: Data were collected from studies identified in CINAHL, Embase, PsycINFO, and PubMed. The search was limited to current empirical studies involving infant EOL care in Asian countries and published in English between 2007 and 2016.
RESULTS: Of 286 studies initially identified, 11 empirical studies conducted in Hong Kong, India, Israel, Japan, Mongolia, Taiwan, and Turkey were included in the review. Four themes were captured: factors influencing decision making, trends in decision making, practical aspects of EOL care, and health care providers' preparation. In most NICUs, health care providers controlled decisions regarding use of life-sustaining treatment, with parents participating in decision making no more than 60% of the time. Although care decisions were gradually changing from "do everything" for patient survival to a more palliative approach, comfort care at the EOL was chosen no more than 63% of the time.
CONCLUSION: While infant EOL care practice and research vary by country, few articles address these matters in Asia. This integrative review characterizes infant EOL care in Asia and explores cultural influences on such care.
BACKGROUND: There is a need for validated measures of cultural competency practices in home health and hospice care (HHHC).
OBJECTIVE: To establish the factor structure of the cultural competency items included in the agency-component of the 2007 public-use National Home and Hospice Care Survey file.
DATA SOURCE: We used weighted survey data from 1036 HHHC agencies.
RESEARCH DESIGN AND PARTICIPANTS: We used exploratory factor analyses to identify a preliminary factor structure, and then performed confirmatory factor analysis to provide further support for identified factor structure.
MEASURES: We examined 9 cultural competency items.
RESULTS: Exploratory factor analyses suggested an interpretable 2-factor solution: (1) the provision of mandatory cultural competency training; and (2) the provision of cultural competency communication practices. Each factor consisted of 3 items. The remaining 3 items did not load well on these factors. A similar, but more restrictive, confirmatory factor analysis model without cross-loadings supported the 2-factor model: (Equation is included in full-text article.)=9.50, P=0.30, root mean square error of approximation (RMSEA)=0.01, comparative fit index (CFI)=0.99, Tucker-Lewis Index (TLI)=0.99.
CONCLUSIONS: Two constructs with 3 items each appeared to be internally valid measures of cultural competency in this nationally representative survey of HHHC agencies: cultural competency training and cultural competency communication practices. These measures could be used by HHHC managers in quality improvement efforts and by policy makers in monitoring cultural competency practices.
Health care in the United States is increasingly delivered in cross-cultural contexts. Empathy, mutual regard, respect, and compassionate communication are necessary to achieve the highest standard of care for each individual. Moral and ethical perspectives on life and death, health, and health care are not universal but rather have their origins within culture and societal norms. In a cross-cultural context, â€œthe right decisionâ€ may be seen differently depending on an individualâ€™s cultural background, discipline, and type of education. This pediatric case study is intended to stimulate conversation on the need for culturally sensitive health care decision making and the shortcomings of a â€œone-size-fits-allâ€ approach to bioethics in our increasingly interconnected world.
Much of what we hear and read in the United States about a good death is studied from a Western perspective. In a previous column, I reviewed some of the research on a good death from the point of view of patients or the person dying.
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