Background: Widespread community engagement in advance care planning (ACP) is needed to overcome barriers to ACP implementation.
Objective: Develop, implement, and evaluate a model for community-based ACP in rural populations with low English language fluency and health care access using lay patient navigators.
Design: A statewide initiative to improve ACP setting/subjects—trained in a group session approach, bilingual patient navigators facilitated 1-hour English and Spanish ACP sessions discussing concerns about choosing a surrogate decision maker and completing an advance directive (AD). Participants received bilingual informational materials, including Frequently Asked Questions, an AD in English or Spanish, and Goal Setting worksheet.
Measurement: Participants completed a program evaluation and 4-item ACP Engagement Survey (ACP-4) postsession.
Results: For 18 months, 74 ACP sessions engaged 1034 participants in urban, rural, and frontier areas of the state; 39% were ethnically diverse, 69% female. A nurse or physician co-facilitated 49% of sessions. Forty-seven percent of participants completed an ACP-4 with 29% planning to name a decision maker in the next 6 months and 21% in the next 30 days; 31% were ready to complete an AD in the next 6 months and 22% in the next 30 days. Evaluations showed 98% were satisfied with sessions. Thematic analysis of interviews with facilitators highlighted barriers to delivering an ACP community-based initiative, strategies used to build community buy-in and engagement, and ways success was measured.
Conclusion: Patient navigators effectively engaged underserved and ethnically diverse rural populations in community-based settings. This model can be adapted to improve ACP in other underserved populations.
A lay patient navigator model involving a culturally tailored intervention to improve palliative care outcomes for Hispanics with advanced cancer was tested across 3 urban and 5 rural cancer centers in Colorado. Five home visits were delivered over 3 months to 112 patients assigned to the randomized controlled trial's intervention arm. Grounded in core Hispanic values, visits addressed palliative care domains (advance care planning, pain/symptom management, and hospice utilization). To describe the content of patient navigator visits with patients/family caregivers, research team members analyzed 4 patient navigators' field notes comprising 499 visits to 112 patients. Based on previous work, codes were established a priori to identify ways patient navigators help patients/family caregivers. Key words and comments from field notes were classified into themes using ATLAS.ti and additional codes established. Nine common themes and exemplars describing the lay patient navigator role are described: activation/empowerment, advocacy, awareness, access, building rapport, providing support, exploring barriers, symptom screening, and the patient experience. Patient navigators used advocacy, activation, education, and motivational interviewing to address patient/family concerns and reduce barriers to quality palliative care in urban and rural settings. Adapting and implementing this model across cultures has potential to improve palliative care access to underserved populations.
Significant disparity exists among non-Western and minority individuals in hospice and palliative care services. A cross-cultural approach that addresses the needs of these patients would decrease this disparity. This study reviews the literature on the experiences of patients from non-Western and minority cultural backgrounds in hospice and palliative care services to inform clinical practice by Western providers. The PubMed database was searched for qualitative studies on patient and family member experiences of end-of-life services among minority or non-Western cultural groups. Eighteen articles met eligibility criteria. The major themes identified include the following: communication and the flow of information, perceptions of hospice and palliative care, and compatibility with cultural beliefs. This review demonstrates similar themes across many non-Western and minority cultures when interacting with hospice and palliative care services. These findings emphasize the importance of a cross-cultural approach in a palliative care and hospice setting.
In the United States, racial and ethnic minorities and people with lower socioeconomic status (SES) face structural, health system, and interpersonal barriers to optimal health care, including palliative care. Much of the available data on palliative care in racial and ethnic minorities and people with lower SES have identified disparities according to race, ethnicity, and SES. Limitations to understanding disparities in palliative care include the fact that much of the available data are cross-sectional, drawn from administrative or claims data, or based on qualitative work in limited geographic areas. To advance our knowledge and achieve health equity with respect to palliative care in patient groups that have been understudied or that are known to receive disparate care, gaining a deeper understanding of the barriers to palliative care is necessary from patients, families, referring providers, and communities. In addition, cultural competency training for all members of the palliative care team and referring providers needs to be changed from being obligatory to being intentional and assessed continuously. Finally, concerted changes in coordination of care, payment structures, and policy are needed.
Background: In Canada, there is a growing need to develop community-based, culturally appropriate palliative care for Indigenous people living in First Nations communities. The public health approach to palliative care, which emphasizes community-based initiatives, is especially relevant in First Nations communities because care is grounded in their distinct social and cultural context. Central to the public health approach are educational strategies that strengthen communities' capacity to care for their vulnerable members as they die. This paper presents community-based research conducted with First Nations communities in Canada that aimed to assess and address local palliative care educational needs to improve community capacity in palliative care.
Methods: Participatory action research (PAR) was conducted with four First Nations communities in Canada over a six-year period (2010-2016). The research occurred in three phases. Phase 1: focus groups, interviews and surveys were employed to assess community specific needs and resources. Phase 2: recommendations were developed to guide the PAR process. Phase 3: educational resources were created to address the identified educational needs. These resources were implemented incrementally over 4 years. Ongoing process evaluation was employed, and revisions were made as required.
Results: Educational needs were identified for patients, families, community members and internal and external health care providers. A wide and comprehensive range of educational resources were created to address those needs. Those culturally appropriate educational resources are available in a very accessible and useable workbook format and are available for use by other Indigenous people and communities.
Conclusions: This research provides an example of the public health approach and offers implementation strategies around palliative care education. This paper contributes to the international literature on the public health approach to palliative care by presenting a case study from Canada that includes: conducting a culturally appropriate assessment of educational needs, creating recommendations, facilitating development and implementation of educational resources in the community to improve community capacity in palliative care.
BACKGROUND: Migrants seem to be underrepresented in palliative care in Germany. Access barriers and challenges in care remain unclear. We aimed to provide a comprehensive insight into palliative care for migrants, using expert interviews.
METHODS: Interviews with experts on palliative and general health care for migrants were audiotaped and transcribed. Data analysis followed a qualitative content analysis method for expert interviews proposed by Meuser and Nagel.
RESULTS: In total, 13 experts from various fields (palliative and hospice care, other care, research and training) were interviewed. Experts identified access barriers on the health care system and the patient level as well as the sociopolitical level. Services don't address migrants, who may use parallel structures. Patients may distrust the health care system, be oriented towards their home country and expect the family to care for them. In care, poor adaptation and inflexibility of health care services regarding needs of migrant patients because of scarce resources, patients' preferences which may contradict professionals' values, and communication both on the verbal and nonverbal level were identified as the main challenges. Conflicts between patients, families and professionals are at risk to be interpreted exclusively as cultural conflicts. Palliative care providers should use skilled interpreters instead of family interpreters or unskilled staff members, and focus on training cultural competence. Furthermore, intercultural teams could enhance palliative care provision for migrants.
CONCLUSIONS: Though needs and wishes of migrant patients are often found to be similar to those of non-migrant patients, there are migration-specific aspects that can influence care provision at the end of life. Migration should be regarded as a biographical experience that has a severe and ongoing impact on the life of an individual and their family. Language barriers have to be considered, especially regarding patients' right to informed decision making. The reimbursement of interpreters in health care remains an open question.
End of life is difficult for all patients but sexual and gender minorities (SGM) are prone to isolation and loneliness, especially if their SGM status is unknown or unaccepted. In oncology clinics, where goals of care discussions about end of life are integral and frequent, querying patients about their SGM status and sexual health is of particular importance. The American Society of Clinical Oncology recently released a position statement that called for greater focus on SGM populations with the goal of reducing and eventually eliminating disparities in cancer care within this group. An important first step in addressing such disparities is learning how best to train cancer health-care providers to ask patients about their SGM status and about sexual health in general. This article summarizes the mandate for understanding cancer issues in SGM populations and the dearth of cancer-related data within this group. This article also describes an ongoing 3-part study intended to build a mini curriculum with the goal of helping cancer health-care providers to ask patients with cancer about SGM status and to ask all patients with cancer about sexual health issues. The results of this ongoing study could potentially improve end-of-life care for subgroups of patients.
Recent data on the inequities in mortality, health, and access to health services experienced by the Traveller community in Ireland show higher rates of death by suicide and other sudden causes among members of this marginalized minority group than in the general population. Psychological literature on bereavement suggests that traumatic deaths and multiple deaths within a close network may be more likely to lead to complicated grief reactions. The aim of this study is to add to our understanding of the effects of the differential mortality rate by exploring how grief is experienced within the Traveller community in the context of bereavement from multiple deaths or sudden deaths (including suicide). Data from three semistructured focus group interviews with a total of 10 Traveller Community Health Worker participants (nine female and one male) were analyzed using Interpretative Phenomenological Analysis. Two master themes organized the salient phenomenological aspects of the grief experience: Living with Tragic Loss and Communicating Tragic Loss. A picture emerged of individual and community-level loss that is extensive, profound, and enduring. The sequelae of deaths by suicide include difficulties in coping, a search for meaning, and a pervasive sense of fear. Silence, the embodied act of giving voice to tragic loss, and strategies for managing disclosure of tragic deaths with children were all strong themes which emerged from the analysis. This study uses interpretative phenomenological analysis to generate a vivid picture of the lived psychological experience of grief as it is experienced by members of a minority group with above average rates of sudden and early deaths. This contributes to understanding the burden of health inequality in an underresearched population. Findings in relation to challenges in communicating with children about tragic deaths can be integrated into bereavement support resources.
This study was conducted to highlight Native American (NA) perspectives on death taboo in order to examine the cultural appropriateness of hospice services for NA patients, if any. Searching literature that addressed taboo and death from historical, psychological, sociological, and anthropological aspects, a comparison of death perspectives was made between NAs and European Americans. A culturally sensitive transition from palliative care to hospice care was suggested for NA patients and their family.
Les vécus de fin de vie des participants se concentrent sur le concept de lutte, de coping en cherchant des connaissances, en restant connectés à leur famille, leur communauté, leur spiritualité et leurs soignants. La majorité des participants gèrent le concept de lutte via leurs valeurs culturelles traditionnelles et leurs cérémonies pour rester dans la vie. Leur idéal de fin de vie est identifié comme être un Indien fier et vivre une vie d'Indien jusqu'au bout.
Les résultats de cette étude pilote suggèrent que des relations existent entre la confiance en le médecin, les données démographiques et les décisions de traitements en fin de vie. Ainsi, les soignants devraient considérer la manière dont les aidants afro-américains perçoivent la confiance en les médecins quand ils les conseillent à propos de la démence et des choix de traitement en fin de vie de leur proche.
Le Canada est un véritable carrefour de communautés issues de cultures diverses. Les professionnels de santé canadiens impliqués dans la prise en charge de patients en fin de vie doivent alors connaître différentes valeurs, perceptions et traditions socioculturelles liées à la maladie et à la mort. A partir des principes explicités dans l'ouvrage "Modèle de guide des soins palliatifs" (Association Canadienne de Soins Palliatifs, 2002), cet article montre la complexité des jugements cliniques et des enjeux cliniques vis-à-vis de cette diversité socio-culturelle. Les soins de fin de vie pour les migrants d'origine africaine et asiatique sont particulièrement explicités. Un tableau récapitulatif des minorités visibles au Canada datant de 2001 illustre la réflexion des auteurs.
Cet article rend compte d'une enquête menée au Royaume-Uni dont l'objectif était d'observer le taux de sensibilisation aux soins palliatifs des patients atteints d'un cancer et d'analyser la relation entre leurs caractéristiques démographiques et ce taux. Cette enquête montre que la connaissance des soins palliatifs est faible parmi les minorités ethniques.
Selon la publication gouvernementale NHS Cancer Plan parue en 2000, les services de soins palliatifs et de ville au Royaume-Uni comptent comptent parmi les "meilleurs au monde". Pourtant, ils sont peu utilisés par les milieux ethniques. A partir d'une revue de la littérature, les auteurs tentent de comprendre les raisons de cette faible fréquentation.
Une revue de la littérature introduit cette étude sur les soins palliatifs et la population hispanique qui est la minorité la plus importante aux Etats-Unis. L'étude présentée a été réalisée à El Paso; elle a pour objectif de rechercher les différences de comportements des patients et des familles hispaniques par rapport à ceux de la population blanche, après leur admission en soins palliatifs. Elle est rétrospective à partir de 500 dossiers fournis par 4 hospices certifiés par Medicare. Les variables analysées par rapport l'influence du facteur ethnique sont démographiques, économiques, sociologiques et culturelles ; des tableaux statistiques résument les résultats obtenus. Il est mis en évidence notamment un nombre de visites moins importants pour les patients hispaniques au niveau de l'accompagnement social et spirituel. Cette analyse cherche à aider les équipes de soins à mieux tenir compte des facteurs culturels dans leur prise en charge.
De précédentes études ont identifié les facteurs ethniques et culturels parmi les composantes des facteurs personnels de décision d'effectuer un dépistage cancéreux dont le détail est repris en tableau. La recherche présentée concerne les raisons d'un taux bas de ce dépistage dans certaines communautés de deux villes du Royaume Uni ; ses objectifs sont résumés dans un tableau. L'étude a été réalisée à partir d'entretiens de groupes enregistrés. Les résultats ont identifié plusieurs thèmes : attitudes culturelles face au cancer, difficultés d'accès aux services de dépistage, obstacles liés au langage, aux croyances culturelles, religieuses, à la représentation de cette démarche, aux relations avec les professionnels de santé ; des extraits de témoignages illustrent cette analyse. Ils doivent être utilisés pour améliorer l'approche et l'information de ces communautés
Une des critiques faite aux soins palliatifs porte sur le fait qu'ils ne serviraient qu'à une minorité de personnes et surtout aux patients cancéreux. Le but de cet article est d'analyser les facteurs responsables de la non-utilisation de ce type de soins par des populations marginales. Une définition de ces groupes et des facteurs d'exclusion tels que l'emprisonnement, la géographie, la culture est présentée. Une illustration est donnée par l'exemple de l'Australie et de sa population aborigène ; sont considérés les rôles de la préservation culturelle, des croyances et des pratiques associées à la maladie et à la mort. Cette réflexion se termine par la citation des principes établis par l'Institut Toda pour le respect des différences culturelles.