Suite à l’annonce de la maladie grave de son grand-père, Garance réalise qu’elle ne sait pas grand-chose de lui, notamment de sa jeunesse et des circonstances qui l’ont mené loin de son pays natal, le Cambodge. Comme pour rattraper ou rallonger le temps, elle lui rend visite aussi souvent que possible et l’interroge sur son passé. Ce passé qui risque bien de changer sa propre vie et sa relation avec ses parents.
Le chat d'Emma tue une mésange. Son ami, Jules Monsieur-Je-sais-tout, lui explique tout ce qu'il faut savoir sur le mystère de la mort dans touts les civilisations, les religions mais aussi les différents rites après la mort et notre condition d'être humain sur terre.
Ce magnifique album sous forme de bande dessinée explique, avec des mots simples et de sympathiques dessins, ce que doivent savoir les enfants sur le mystère de la mort.
Les connaissances anciennes et nouvelles de la notion d'éternité sont regroupées dans cette BD très concise et très claire permettant de comprendre la recherche actuelle et les enjeux philosophiques des choix de recherche par rapport à la mort.
Alejandro rentrant chez lui après un bon repas, rencontre au coin d'une rue une femme pour le moins... squelettique. Jeune illustrateur voyageur, Mickaël Soutif nous raconte une histoire toute en rimes légères, habile prétexte à évoquer la mort d'un point de vue parfaitement original, celui des morts, avec pour décor la fête des morts au Mexique.
Hmong Americans have typically been unwilling to use biomedical palliative care for end-of-life needs. This has resulted in confusion and frustration for Hmong patients, families, and nurses. Hmongs' end-of-life care choices for family members usually involve in-home caregiving provided by the family using a combination of biomedicine and traditional healing methods. Health care decisions are made for the patient by the family and community in this familistic culture. A qualitative approach was used to explore the beliefs that ultimately determine end-of-life care goals and strategies for Hmong patients. Semistructured interviews were conducted with 15 family caregivers of terminally ill patients and 5 shamans and Hmong funeral officiants. Several themes affecting care choices were identified, including cultural legacies of the responsibility of end-of-life caregiving by the family, the desire for family privacy in caregiving, and the role of community in the care for the dying, as well as completion of the rituals that ensure the soul of the deceased reaches the afterlife. Suggestions for improving communication between Hmongs and biomedical providers include providing information about end-of-life care beliefs and strategies to biomedical care providers and providing information to Hmong patients and families about hospice and palliative care options and services to support family care.
Background: The PACE Steps to Success programme is a complex educational and development intervention to improve palliative care in nursing homes. Little research has investigated processes in the cross-cultural adaptation and implementation of interventions in palliative care across countries, taking account of differences in health and social care systems, legal and regulatory policies, and cultural norms. This paper describes a framework for the cross-cultural development and support necessary to implement such an intervention, taking the PACE Steps to Success programme as an exemplar.
Methods: The PACE Steps to Success programme was implemented as part of the PACE cluster randomised control trial in seven European countries. A three stage approach was used, a) preparation of resources; b) training in the intervention using a train-the-trainers model; and c) cascading support throughout the implementation. All stages were underpinned by cross-cultural adaptation, including recognising legal and cultural norms, sensitivities and languages. This paper draws upon collated evidence from minutes of international meetings, evaluations of training delivered, interviews with those delivering the intervention in nursing homes and providing and/or receiving support.
Results: Seventy eight nursing homes participated in the trial, with half randomized to receive the intervention, 3638 nurses/care assistants were identified at baseline. In each country, 1–3 trainers were selected (total n = 16) to deliver the intervention. A framework was used to guide the cross-cultural adaptation and implementation. Adaptation of three English training resources for different groups of staff consisted of simplification of content, identification of validated implementation tools, a review in 2 nursing homes in each country, and translation into local languages. The same training was provided to all country trainers who cascaded it into intervention nursing homes in local languages, and facilitated it via in-house PACE coordinators. Support was cascaded from country trainers to staff implementing the intervention.
Conclusions: There is little guidance on how to adapt complex interventions developed in one country and language to international contexts. This framework for cross-cultural adaptation and implementation of a complex educational and development intervention may be useful to others seeking to transfer quality improvement initiatives in other contexts.
Information about traditional end-of-life care customs was gathered from Maori New Zealanders. How health and palliative care services helped or hindered families to use their customs within different health care settings was also examined. The use of the digital story-telling method to create personalised short videos is reported on in this paper. Kaupapa Maori Research and social constructivist methods were employed to conduct face-to-face interviews with 61 Maori families (including someone with a life limiting illness), plant medicine healers, spiritual practitioners and health and palliative care providers. Of these, sixteen family representatives participated in a digital story telling workshop. A Kaupapa Maori thematic analysis confirmed earlier findings that the digital storytelling method was a useful technique to record Maori traditional caregiving customs. Subject material aligned with four dominant themes; (1) ‘whanau manaaki’, where the mana (value, prestige, authority) of family was given visibility and was celebrated; (2) the ‘importance of wairuatanga’ provided insight into the place of Maori spirituality, (3) the ‘importance of rongoa rakau’ highlighted the role of traditional plant medicines; and (4) the ‘cultural support provided by health professionals’ reflected the care values health and palliative Q3 care professionals should ideally adopt.
The need for cultural understanding is particularly important in end-of-life (EOL) care planning as the use of EOL care in minority populations is disproportionately lower than those who identify as Caucasian. Data regarding the use of EOL care services by Native Hawaiians in Hawai'i and the United States is limited but expected to be similarly disproportionate as other minorities. In a population with a lower life expectancy and higher prevalence of deaths related to chronic diseases such as cardiovascular disease, diabetes, and obesity, as compared to the state of Hawai'i as a whole, our objective was to review the current literature to understand the usage and perceptions of EOL care planning in the Native Hawaiian population. We searched ten electronic databases and after additional screening, seven articles were relevant to our research purpose. We concluded that limited data exists regarding EOL care use specifically in Native Hawaiians. The available literature highlighted the importance of understanding family and religion influences, educating staff on culturally appropriate EOL care communication, and the need for more research on the topic. The paucity of data in EOL care and decision-making in Native Hawaiians is concerning and it is evident this topic needs more study. From national statistics it looks as though this is another health disparate area that needs to be addressed and is especially relevant when considering the rapid increase in seniors in our population.
More research to examine factors contributing to health-care disparities at the end of life is greatly needed. This article outlines a failed attempt to quantify some of the motivators in medical decision-making for African American families faced with a decision to pursue or forego a percutaneous endoscopic gastrostomy in a loved one at the end of life. It explores the complexities of spirituality, history, culture, and death in our patient population in Charleston, South Carolina, where health-care disparities are well-documented, and distrust has deep historical roots. It outlines the need for qualitative research, where the defining role of the researcher is to practice the paramount palliative skill of listening.
Childhood bereavement services are a relatively recent form of child welfare provision in the UK. They are predicated on assumptions about the development of children and on an increasing research base that describes the potential impact of childhood bereavement and that support following bereavement is beneficial. UK services largely began as a result of practitioners responding to the needs of bereaved children. Over time, services have become more formalised into an organisational framework, contributing to and influenced by practice based experience, research and training. They have become more sophisticated and wide-ranging in their response to the needs of bereaved children for which there is evidence of a favourable impact on their wellbeing. More importantly, as a structural form of provision now embedded within the UK’s health and social landscape, childhood bereavement services have had a significant impact on social policy and the wider cultural discourse concerning bereaved children.
Based on interviews with Senegalese people living in four contemporary urban neighbourhoods, who had experienced the death of an adult family member, we explore how the research challenged and surprised the White, British members of the research team. Such challenges help to shed light on some dominant, taken-for-granted understandings of ‘bereavement’ based in ‘Western’ perspectives. The surprises include how the death was discussed and explained; patterns of family living and the implications for how individuals responded to the death; the emotional significance of particular religious expectations; and the emotional implications of material hardships. After exploring how interviewees responded to the deaths in Senegal, we consider how these responses compare with expectations and taken-for-granted assumptions about ‘bereavement’ in the contemporary UK. We conclude by discussing the implications for bereavement support and professional practice, in relation to diverse responses to death.
Je me souviendrai toujours de ce patient de 24 ans atteint d'un cancer du foie. C'était en 2008. Il était au stade terminal dans le service de médecine interne de l'hôpital de Kibagabaga, un hôpital de district situé dans la capitale Kigali. Il souffrait horriblement d'une douleur sévère, mais le règlement sur l'utilisation des opiacés était un vrai parcours du combattant. Pour une seule ampoule de morphine de 10 mg, il fallait rédiger une prescription au stylo rouge, et la signature du pharmacien, de l'anesthésiste et du chef de service. Je n'oublierai jamais sa mère. Elle m'avait suivi après le tour de salles et supplié à genous de donner à son fils un médicament qui le ferait dormir pour qu'il ne se réveille plus. Les cris et les pleurs de son fils étaient traumatisants et insupportables pour les autres patients. Mais aussi pour elle et sa famille, bien sûr, qui ne pouvaient pas accepter que leur proche finisse sa vie avec cette douleur inhumaine que les médecins étaient incapables de traiter. Cette histoire a marqué un tournant majeur dans ma vie professionnelle. J'ai compris que, malgré les années passées à la faculté de médecine, j'avais encore beaucoup à apprendre sur la prise en charge des patients souffrant de maladies incurables et de leur famille. Trois jours plus tard, mon patient mourut dans des douleurs atroces, entouré par un personnel soignant frustré de n'avoir pu utiliser d'opiacés pour soulager ses souffrances.
[début de l'intro.]
Background: The ethical principle of justice demands that resources be distributed equally and based on evidence. Guidelines regarding forgoing of CPR are unavailable and there is large variance in the reported rates of attempted CPR in in-hospital cardiac arrest. The main objective of this work was to study whether local culture and physician preferences may affect spur-of-the-moment decisions in unexpected in-hospital cardiac arrest.
Methods: Cross sectional questionnaire survey conducted among a convenience sample of physicians that likely comprise code team members in their country (Indonesia, Israel and Mexico). The questionnaire included details regarding respondent demographics and training, personal value judgments and preferences as well as professional experience regarding CPR and forgoing of resuscitation.
Results: Of the 675 questionnaires distributed, 617 (91.4%) were completed and returned. Country of practice and level of knowledge about resuscitation were strongly associated with avoiding CPR performance. Mexican physicians were almost twicemore likely to forgo CPR than their Israeli and Indonesian/Malaysian counterparts [OR1.84 (95% CI 1.03, 3.26), p = 0.038]. Mexican responders also placed greater emphasison personal and patient quality of life (p < 0.001). In multivariate analysis, degree of religiosity was most strongly associated with willingness to forgo CPR; orthodox respondents were more than twice more likely to report having forgone CPR for apatient they do not know than secular and observant respondents, regardless of the country of practice [OR 2.12 (95%CI 1.30, 3.46), p = 0.003].
Conclusions: In unexpected in-hospital cardiac arrest the decision to perform or withhold CPR may be affected by physician knowledge and local culture as well as personal preferences. Physician CPR training should include information regarding predictors of patient outcome at as well as emphasis on differentiating between patient and personal preferences in an emergency.
OBJECTIVE: Interventions are needed to improve mental health (i.e., depression, anxiety) and palliative care (i.e., symptoms, goals of care, and advance care planning) outcomes in Latino/as with advanced cancer.
METHODS: An interprofessional study team used the Ecological Validity Model and a participatory approach to adapt an evidence-based counseling intervention for Latino/as and integrate the counseling intervention with an evidence-based patient navigator intervention. Next, a small pilot study was conducted to understand and improve the feasibility of the integrated Puente para Cuidar intervention.
RESULTS: Adaptations were made to language, literacy, and content of the counseling intervention, and video vignettes of the counseling case studies were produced on the recommendation of Latino/a stakeholders. Bicultural, bilingual patient navigators were used as "cultural brokers" between Latino/a patients and the counselor. The pilot study of Puente para Cuidar demonstrated feasibility based on participant perception of helpfulness and acceptability and nearing goal visit completion rates.
CONCLUSIONS: A culturally adapted intervention to address mental health and palliative care needs in Latino/as with advanced cancer was developed from prior evidenced-based interventions using a cultural adaptation model and a participatory approach. The intervention is ready for effectiveness testing.
Grief and loss are universal experiences for all individuals and communities. The experience of a loss due to death and the bereavement process to follow are influenced by an individual's religious values and beliefs. In this article, we discuss the Sikh bereavement process in the United States. We provide brief personal narratives as exemplar case studies, highlight religious and cultural factors, and explain potential challenges of bereavement. Finally, we discuss implications for mental health clinicians and other providers of services that surround death and dying.
Healthcare services are often out of sync with cultural, spiritual and religious perspectives on health, death, and grieving. This dissonance affects attitudes and behaviours in seeking and utilizing end-of-life health services and can lead to poor clinical communication, misunderstanding, and anxiety as patients, families and health providers interact during a serious illness. To address a gap in cultural-specific information Canadian Virtual Hospice launched LivingMyCulture.ca-an evidence-informed collection of videos of immigrants, refugees, and Indigenous people sharing their stories about the intersection of culture, spirituality, and religion with their experiences of advanced illness, palliative care, and grief. The video repository includes over 650 video clips, available in 11 different languages. These narratives empower and educate patients and their families by raising their awareness about accessing, advocating, and receiving culturally safe and inclusive care as they navigate the Canadian healthcare system. LivingMyCulture.ca also promotes culturally sensitive care among health providers to enhance their knowledge and skills in providing culturally safe and inclusive care in order to improve care outcomes. This presentation will introduce LivingMyCulture.ca, provide strategies for incorporating the tool into practice to support patient and family care and share summative evaluation results. A Somali-Canadian journalist and community leader will share her unique Muslim and Somali perspective about the way illness, dying and grief is approached and the impact of LivingMyCulture.ca in the community. Overviews of other culture groups' video resources will also be shared, reflecting Canada's rich cultural tapestry. This workshop will provide an overview of LivingMyCulture.ca, share video clips from the 11 cultures in the series and include a discussion with a Somali-Canadian journalist and community leader about the way people in her culture approach illness, dying and grief and the overall impact of LivingMyCulture.ca.
BACKGROUND: Life-limiting illness plagues Native Americans, yet access to palliative and end-of-life care, including hospice care, is severely limited.
AIM: This study aimed to explore palliative and hospice care with Native American elders and tribal health educators on a Northern Plains reservation in the US.
METHODS: Using a community-based participatory approach, participants discussed the cultural acceptability of palliative and hospice care in their tribal community. Monthly talking circles were held over a 5-month period.
RESULTS: Opportunities were present for improving cultural awareness and advance directive education to elders. Challenges raised were related to infrastructure, tribal government and the Indian Health Service. Needs identified included cultural awareness and language education for health-care providers and advance directive education.
CONCLUSION: Community-based participatory research is useful when working with indigenous populations. Health professionals providing services to Native American communities must embrace cultural differences, seeking to learn from the culture itself how to best meet its people's needs.
Background: Latino patients with advanced cancer need culturally responsive, effective psychotherapeutic interventions that can assist them in coping with their diagnosis and improve spiritual and existential well-being and psychological adjustment.
Objective: This study describes the cultural and linguistic adaptation of individual meaning-centered psychotherapy for Latinos with advanced cancer.
Design: A mixed-methods, concurrent integrative approach was used for this study, using the ecological validity and cultural adaptation process models as frameworks for cultural adaptation.
Setting/Subjects and Measurements: Quantitative and qualitative data were collected through (1) a survey of mental health professionals (n = 70) who offer services to Latino cancer patients; (2) a questionnaire for Latino patients with advanced cancer (n = 54), measuring relevant intervention concepts; and (3) in-depth interviews with 24 Latino patients.
Results: Quantitative findings showed that most of the goals and concepts were highly acceptable for patients and providers. The qualitative findings supported adaptations to include using more simple definitions; changing phrases that are challenging to translate and comprehend; using words that are common to all Latino cultures, providing more than one option if needed; simplifying the questions/reflections, as needed; changing the metaphors to be culturally congruent; and modifying content to make it responsive to Latino cultural values and norms.
Conclusions: Findings demonstrate the need for adaptation to achieve the aims of the intervention, accounting for both linguistic and cultural considerations, emphasizing issues related to literacy, cultural and linguistic diversity, cultural values, and culturally congruent content. The mixed-methods approach is described to provide recommendations for clinicians, researchers, and program developers.
Background: Diverse cultures and social contexts can exhibit different values, religious meaning systems, social norms concerned with social responsibility and interpersonal and family relations. These factors play an essential role in individuals’ decisions and preferences for end-of-life care.
Aims: To explore Taiwanese adults’ perspectives on the influences of cultural, social and contextual factors on preferences for end-of-life care.
Methods: A semi-structured face-to-face interview approach and content analysis were used. A total of 16 adults were recruited.
Findings: Major themes identified as influencing factors included social, cultural and religious aspects, professional and community resources, perceptions about end-of-life services and attitudes toward death and dying.
Discussion: This suggests that people’s end-of-life preferences can be influenced by social and cultural norms, the adequacy of systems for advance care planning, knowledge about advance directives and palliative care, and emotional reactions toward death and dying.
Conclusions: Findings provided insight into adults’ perspectives on how cultural, social norms and religious values and professional support shape individuals’ beliefs and attitudes toward death and dying as well as in end-of-life decision making. These findings contribute to our understanding of adults’ end-of-life preferences and provide guidance for health professionals and communities in assisting Taiwanese people plan for the end of life.
Sexual and gender minorities experience disparities throughout the life course. These are especially detrimental at the end-of-life and can include disenfranchised grief, homophobia and transphobia from medical staff, and forced outing. The best healthcare training approach to ameliorate health disparities is debated. Cultural competency trainings for clinicians have been commonly proposed by major medical institutions and certifying bodies to ameliorate lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ) health disparities. However, cultural competency trainings have limitations, including (1) false competence, (2) measurement issues, and (3) ecological fallacy (i.e., assuming individuals conform to the norms of their cultural group). The purpose of this commentary is to describe the limitations of cultural competency training and argue for healthcare systems to implement cultural humility trainings as a way to reduce LGBTQ health disparities at the end-of-life. The strengths of cultural humility training include focus on (1) individuals instead of their cultural groups, (2) self-reflection, and (3) active listening. While there are challenges to implementing cultural humility trainings in the health-care system, we assert that these trainings align with the aims of healthcare systems and can be an essential tool in reducing LGBTQ health disparities. We suggest practical components of successful cultural humility trainings including leadership buy-in, appropriate outcome measurements, multiple training sessions, and fostering a safe reflection space.