Background: A multilevel quality improvement program was implemented at an urban community hospital, serving a racially and ethnically pluralistic patient population, to increase participation in advance care planning (ACP).
Measures: Number of eligible patients who completed an ACP form.
Intervention: Projects were implemented over the course of two years that targeted patients, health care providers, the organization, and the community.
Outcomes: The intervention resulted in increased completion of four unique ACP forms. Completion of the Living Will increased by 60%, Health Care Proxy increased by 9%, Medical Orders for Life-Sustaining Treatment increased by 5%, and Do-Not-Resuscitate/Do-Not-Intubate orders increased by 3%.
Conclusion: Multilevel interventions can increase ACP participation in a racially and ethnically pluralistic patient population.
We read with interest the Editorial about redefining vulnerability in the era of coronavirus disease 2019 (COVID-19). The Editors recognise underserved and marginalised populations enduring the COVID-19 pandemic, and that the category of vulnerable individuals or groups is not fixed but evolves in response to policies that might create or reinforce vulnerability. When we ask what being vulnerable means, are we also creating the spaces needed to question what it means to be made vulnerable?
Caregiving and bereavement outcomes are strongly influenced by socio-cultural context. Past research has found higher levels of caregiver burden and psychological morbidity in Portuguese compared to Brazilian caregivers. This study compared Brazilian and Portuguese family caregivers in palliative care to identify differences in psychological morbidity and caregiver burden and their relationship with psychosocial factors such as sociodemographic variables, circumstances of end-of-life care and dying, social support, family functioning, and perception of quality of care. Prospective data were collected from convenience samples of family caregivers in Brazil (T0 n = 60; T1 n = 35) and Portugal (T0 n = 75; T1 n = 29) at two separate time points—during caregiving (T0), and during the first two months of bereavement (T1). The study samples consisted mostly of women, offspring, and spouses. In both countries, family caregivers devoted most of their day to taking care of their sick relatives and reported a lack of practical support. Portuguese caregivers had higher levels of burden than Brazilian caregivers, and in both populations a greater burden was associated with more psychopathological symptoms. Higher caregiver burden among Portuguese caregivers was associated with the circumstances of death and the perceived lack of emotional support. Among Portuguese caregivers, symptomatology persisted during bereavement, reaching significantly higher levels of anxiety, somatization, and peritraumatic symptoms compared to the Brazilian sample. These results show differences between family caregiver samples in Portugal and Brazil during the bereavement process. Understanding the underlying cultural patterns and mechanisms requires future research.
Purpose: Lack of appreciation of cultural differences may compromise care for seriously ill minority patients, yet culturally appropriate models of palliative care (PC) are not currently available in the United States. Rural patients with life-limiting illness are at high risk of not receiving PC. Developing a PC model that considers the cultural preferences of rural African Americans (AAs) and White (W) citizens is crucial. The goal of this study was to develop and determine the feasibility of implementing a culturally based PC tele-consult program for rural Southern AA and W elders with serious illness and their families, and assess its acceptability to patients, their family members, and clinicians.
Methods: This was a three-phase study conducted in rural Beaufort, South Carolina, from January 2013 to February 2016. We used Community-Based Participatory Research methods, including a Community Advisory Group (CAG) with equal numbers of AA and W members, to guide the study. Phase 1: Cultural values and preferences were determined through ethnic-based focus groups comprising family members (15 W and 16 AA) who had cared for a loved one who died within the past year. We conducted a thematic analysis of focus group transcripts, focused on cultural values and preferences, which was used as the basis for the study protocol. Phase 2: Protocol Development: We created a protocol team of eight CAG members, two researchers, two hospital staff members, and a PC physician. The PC physician explained the standard clinical guidelines for conducting PC consults, and CAG members proposed culturally appropriate programmatic recommendations for their ethnic group for each theme. All recommendations were incorporated into an ethnic-group specific protocol. Phase 3: The culturally based PC protocol was implemented by the PC physician via telehealth in the local hospital. We enrolled patients age =65 with a life-limiting illness who had a family caregiver referred by a hospitalist to receive the PC consult. To assess feasibility of program delivery, including its acceptability to patients, caregivers, and hospital staff, using Donebedian's Structure-Process-Outcome model, we measured patient/caregiver satisfaction with the culturally based consult by using an adaptation of FAMCARE-2.
Results: Phase 1: Themes between W and AA were (1) equivalent: for example, disrespectful treatment of patients and family by hospital physicians; (2) similar but with variation: for example, although religion and church were important to both groups, and pastors in both ethnic groups helped family face the reality of end of life, AA considered the church unreservedly central to every aspect of life; (3) divergent, for example, AAs strongly believed that hope and miracles were always a possibility and that God was the decider, a theme not present in the W group. Phase 2: We incorporated ethnic group-specific recommendations for the culturally based PC consult into the standard PC consult. Phase 3: We tested feasibility and acceptability of the ethnically specific PC consult on 18 of 32 eligible patients. The telehealth system worked well. PC MD implementation fidelity was 98%. Most patients were non-verbal and could not rate satisfaction with consult; however, caregivers were satisfied or very satisfied. Hospital leadership supported program implementation, but hospitalists only referred 18 out of 28 eligible patients.
Conclusions: The first culturally based PC consult program in the United States was developed in partnership with AA and W Southern rural community members. This program was feasible to implement in a small rural hospital but low referral by hospitalists was the major obstacle. Program effectiveness is currently being tested in a randomized clinical trial in three southern, rural states in partnership with hospitalists. This method can serve as a model that can be replicated and adapted to other settings and with other ethnic groups.
Context and aim: Family as the basic social structure is relevant for caring in pediatric cancers because it supports almost all the treatment in the Cameroonian context. During a work in 2018, published in February 2019 on the behaviours of carers when a child is about to die of pediatric cancer, we were struck by the sentence of a saddened mother, “I didn’t expect to talk about this, since the child died, the word family does not mean anything for me anymore”. Thus, this article is interested by the future of families that lost a child of cancer and is based on a qualitative research. With family as focus, the main questions are knowing how families face cancers treatments and how about their future after the death of children in the Cameroonian context.
Material and method: Data collection is based on a literature review and semi-structured interviews with nuclear families, single-parent families and extended families, who are bereaved of pediatric cancer. Semantic analysis permits data's interpretation through the model of deviant orientation of Parsons T., related to alienation and extended to rebelliousness or withdrawal that have a relative look with the spontaneous order of methodological individualism and functional substitutes of functionalism.
Results: Therefore, this methodological device shows that emergence of nuclear families in Africa is related to poverty and westernization of some African cultural trends, which has an effect on the emblematic “African solidarity”. The financial dwindling of extended families, due to the high costs of pediatric cancers treatments in the exclusive charge of patients’ families, is leading to the transition from mechanical to organic solidarities. Hence, the nuclearization of certain extended families and individualization of some behaviors. In a context where the recourse to psychology only refers to foolish people, this isolation in turn entails a significant emotional investment, mainly among people who keep the patients, as mothers who are pillars of their families. This emotional overflow continues even after the death of the child, so that even the current relationship particularly in the nuclear or monoparental families where mothers are pillars, is at stake.
Conclusion: On the hole, knowledge and understanding of the cultural and psychosocial determinants able to deconstruct families after children's death, is an asset to look for a better future for patients and families during cancers treatments.
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.
Religion and culture play important roles in influencing end-of-life communication among the elderly. However, little is known about end-of-life communication among elderly nursing home residents. A qualitative study involving a sample of 13 elderly residents of a non- government nursing home in the north of Peninsular Malaysia was conducted to investigate residents' attitudes and ideas about their end-of-life preferences. Thematic analysis was performed to identify major themes emerging from the interviews. This study found that elderly residents actively avoided end-of-life communication, but that their cultural and religious beliefs remained of paramount importance. It is hoped that these findings will provide a platform upon which to improve current nursing home care in Malaysia.
Hospice is patient-centered end-of-life care. Hispanics are underrepresented among hospice patients (7.1%) relative to the U.S. population (17%). We conducted a systematic review of the literature and meta-analysis to understand this underrepresentation further. In palliative care, Hispanic hospice enrollment is comparable to that of non-Hispanic Whites (NHWs) (RR 1.02, 95% CI: 0.93-1.12; z=0.49; p = .627). However, in cases of heart failure (OR 0.49, 95% CI 0.37-0.66) and stroke (OR 0.77, 95% CI 0.63-0.94), Hispanics are much less likely to use hospice than NHWs. Cancer studies are mixed, but in meta-analysis were significant for lower relative hospice use in Hispanics (RR 0.96, 95% CI: 0.94-0.99; z=3.01; p=.003). It remains unclear whether using census and insurance data in statistical analysis provides valid results since the Hispanic population is younger, healthier, and less likely to be insured. Health equity in hospice may be better represented by hospice quality rather than hospice enrollment rates.
INTRODUCTION: Significant number of women present with advanced-stage breast cancer in Ghana. These women usually depend on family caregivers for their multi-dimensional needs. Yet, there are gaps in research about what motivates family caregivers to assume the caring role and their experiences with caregiving within the Ghanaian context.
AIM: To explore and describe the caregiving motivations and experiences among family caregivers of patients living with advanced breast cancer.
METHODS: In-depth, semi-structured qualitative interviews were conducted with 15 family caregivers who were providing unpaid care for women living with advanced breast cancer. Colaizzi's thematic analysis was used to analyze the data.
RESULTS: Family relationship normally prescribed the caregiving role among family caregivers. Due to the lack of home-based palliative services in Ghana, findings suggest that family caregivers are the main managers of advanced breast cancer-related symptoms in the home. These findings are discussed under three major themes: (i) motivation for assuming the caregiving role; (ii) meeting self-care and psychosocial needs of the patient; and (iii) symptom management and monitoring.
CONCLUSION: Socio-cultural values influence the role of family caregivers in Ghana. This presents opportunities for health professionals and relevant stakeholders to develop a culturally-appropriate intervention to support informal caregivers in their home-based care for women living with advanced breast cancer in Ghana.
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.
The views of family carers who provide end of life care to people of advanced age are not commonly known. We conducted a bicultural study with bereaved New Zealand Maori (indigenous) and non-indigenous family carers who, on behalf of their older family member, reflected on the end of life circumstances and formal and informal care experienced by the older person. Semi-structured interviews were undertaken with 58 people (19 Maori and 39 non-Maori), who cared for 52 family members who died aged over 80 years. A Kaupapa Maori thematic analysis of family/whanau perspectives identified examples of good holistic care as well as barriers to good care. These are presented in a proposed Whare Tapa Wha Older Person’s Palliative Care model. Good health care was regarded by participants as that which was profoundly relationship-oriented and upheld the older person’s mana (authority, status, spiritual power) across four critical health domains: Whanau (social/family), Hinengaro (emotional/mental), Wairua (spiritual) and Tinana (physical) health domains. However, poor health care on one level impacted on all four domains affecting (reducing) mana (status). The “indigenous” model was applicable to both indigenous and non-indigenous experiences of end of life care for those in advanced age. Thus, Indigenous perspectives could potentially guide and inform end of life care for all.
Background: Increasing evidence shows that advance care planning is effective in improving outcomes. However, its applicability and acceptability outside Western cultures remain unknown. Examination of relevant cultural adaptations is required prior to wider adoption.
Aim: To examine the feasibility and acceptability of a culturally adapted advance care planning intervention in a Taiwanese inpatient hospital for advanced cancer patients, family members and healthcare professionals.
Methods: A single-group, non-controlled, mixed methods feasibility study guided by a previously developed logic model. The culturally adapted advance care planning intervention represented a one-time intervention, comprising pre-advance care planning preparation and follow-up consultation. Qualitative interviews explored participants’ view on their involvement in the study. Patients’ medical records were examined to assess intervention fidelity. Findings from both data sets were integrated following analysis.
Results: N = 29 participants (n = 10 patients; n = 10 family members and n = 9 healthcare professionals) participated in the intervention, of who 28 completed follow-up interviews. Of the 10 advance care planning interventions delivered, most components (n = 10/13) were met. Key contextual moderators influencing the intervention feasibility included: (1) resource constraints resulting in increased workload; (2) care decisions informed by relatives’ experiences of care; (3) the requirement for financial and policy support; and (4) a presumption for end-of-life care provision and surrogate decision-making. Six areas of intervention refinement were identified for future research.
Conclusion: Implementing a culturally adapted advance care planning intervention in an inpatient hospital setting in Taiwan is possible. The participants reported the intervention to be acceptable. However, careful attention to the conceptual underpinning using local primary data is imperative for its success.
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.