ArticlePublisher preview available

End of Life Care for Older Russian Immigrants - Perspectives of Russian Immigrants and Hospice Staff

Authors:
Emily Eckemoff at Brenau University
Emily Eckemoff
S. Sudha at University of North Carolina at Greensboro
S. Sudha
Dan Wang
Dan Wang
Dan Wang
  • This person is not on ResearchGate, or hasn't claimed this research yet.
Read publisher preview
Download citation
To read the full-text of this research, you can request a copy directly from the authors.

Abstract

Abstract This pilot study examined immigrant Russian seniors and adult children’s views on end-of-life care, and hospice staff members’ experiences providing care to diverse immigrant clients, in areas of North Carolina with a high proportion of immigrants. Data were collected through individual in-depth interviews with informants, including Russian immigrant seniors, Russian adult children, and hospice staff, and analyzed by qualitative techniques. Findings indicate that there is little awareness of end-of-life care options among the Russian immigrant community in North Carolina. End-of-life care is rarely discussed within the family of first generation Russian immigrants but second-generation families are more open to doing so. First generation immigrant Russian seniors in our study do not seem to want any specialized end-of-life care often due to lack of awareness, and prefer family care. Second generation seniors’ attitudes are more accepting of this type of care. Hospice staff serve all those who seek care, receive training to serve diverse clients, and prioritize professional policies. There is sometimes potential for a gap between hospice policies regarding care and immigrant families’ expectations for care. Results suggest a great need for community outreach to immigrant groups to raise awareness of end-of-life care, including advance directives and hospice care and the role of interpreters in health care settings.
A preview of this full-text is provided by Springer Nature.
Learn more
Content available from Journal of Cross-Cultural Gerontology
This content is subject to copyright. Terms and conditions apply.
ORIGINAL ARTICLE
End of Life Care for Older Russian Immigrants - Perspectives
of Russian Immigrants and Hospice Staff
Emily H. Eckemoff
1
&S. Sudha
2
&Dan Wang
2
Published online: 14 August 2018
#Springer Science+Business Media, LLC, part of Springer Nature 2018
Abstract
This pilot study examined immigrant Russian seniors and adult children’s views on end-of-life
care, and hospice staff members’experiences providing care to diverse immigrant clients, in
areas of North Carolina with a high proportion of immigrants. Data were collected through
individual in-depth interviews with informants, including Russian immigrant seniors, Russian
adult children, and hospice staff, and analyzed by qualitative techniques. Findings indicate that
there is little awareness of end-of-life care options among the Russian immigrant community
in North Carolina. End-of-life care is rarely discussed within the family of first generation
Russian immigrants but second-generation families are more open to doing so. First generation
immigrant Russian seniors in our study do not seem to want any specialized end-of-life care
often due to lack of awareness, and prefer family care. Second generation seniors’attitudes are
more accepting of this type of care. Hospice staff serve all those who seek care, receive
training to serve diverse clients, and prioritize professional policies. There is sometimes
potential for a gap between hospice policies regarding care and immigrant families’expecta-
tions for care. Results suggest a great need for community outreach to immigrant groups to
raise awareness of end-of-life care, including advance directives and hospice care and the role
of interpreters in health care settings.
Keywords Russian immigrants .End-of-life care attitudes in diverse populations .Hospice staff
care for diverse patients
Journal of Cross-Cultural Gerontology (2018) 33:229–245
https://doi.org/10.1007/s10823-018-9353-9
*S. Sudha
s_shreen@uncg.edu
Emily H. Eckemoff
Hensley.emily5@gmail.com
Dan Wang
wangdan.ivy@gmail.com
1
School of Occupational Therapy, Brenau University, 500 Washington St SE, Gainesville, GA 30501,
USA
2
Department of Human Development and Family Studies, UNC Greensboro, 248 Stone Bldg,
Greensboro, NC 27402-6170, USA
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
... Country. Of the 39 studies, fifteen came from Australia [16][17][18][19][20][21][22][23][24][25][26][27][28][29][30], twelve from the United States [31][32][33][34][35][36][37][38][39][40][41][42], seven from Europe and the United Kingdom [43][44][45][46][47][48][49], and five from Canada [50][51][52][53][54]. ...
... Here, seven studies identified the target population based on the regional demographics [39,40,[43][44][45]50,53]. For example, de Voogd and colleagues explored the experiences of the three largest migrant groups in the Netherlands: Turkish, Moroccan, and Surinamese [44]. Eckemoff and colleagues, on the other hand, studied Russian-Americans as the first author had a connection to this community [32]. ...
... Palliative care in linguistic minorities: A scoping review [50,52], grounded theory [19,31,34,35,39], phenomenology [29,47], and case study [17,51]) and analyses [21,[23][24][25]27,30,32,33,43,46,48,53]. There were nine quantitative studies, including retrospective cohort [28,37,42,54] and cross-sectional/survey research [18,38,40,41,49]. ...
The effect of language discordance on the experience of palliative care: A scoping review
Article
Full-text available
Background Internationally, research demonstrates consistent disparities in access to palliative care services for those in underserved communities with life-limiting conditions. Objectives This outcomes-oriented scoping review examines the impact of language discordance on palliative care (PC) experiences. It seeks to answer the question: what are the PC experiences of individuals who do not speak the same language as their care provider? The review explored the range and depth of existing research and synthesizing trends across studies. Design Online databases were used to find articles published in English or French, from January 1, 2010, to February 5, 2024. Inclusion criteria included studies that explored the relationship between palliative, end-of-life or hospice care, as well as advance care planning in the context of language discordance between individual and health care provider. This scoping review was originally designed to explore Canadian official language minority communities, but was broadened to an international search for a more robust dataset. Results A total of 39 articles were included in the review, 23 qualitative studies, nine quantitative studies and seven mixed-methods studies. The following elements were extracted from eligible articles: country, study design, target population and definitions, participant characteristics, definitions of PC, outcomes studied, findings related to the study aims, as well as author-defined study limitations and next steps. Areas for further research were identified, as were areas for policy and practice change. Studies used various perspectives of PC, often synonymizing it with end-of-life and hospice care, as well as advanced care planning. There was no contextual definition of language barriers in the studies and no studies that explored the PC in any Canadian official language minority communities. The importance of in-language resources, accessibility of skilled interpreters, education in cross-cultural care were all common themes in the literature. Conclusions From a variety of perspectives, studies generally found that language discordance has a negative impact on the quality of accessibility of palliative, end-of-life and hospice care, as well as advanced care planning. Given that Canada’s population is becoming increasingly linguistically diverse, there is a need to better understand the impact of receiving PC from individuals who speak another language on both the quality of PC and quality of life at the end of life.
View
... In another study, older adults and adult children's groups preferred family carer arrangements, citing language barriers and cultural insensitivity by healthcare workers (Eckemoff et al., 2018). For participants who migrated to the USA as adults, language was a significant barrier as most participants did not speak English and there was no palliative care information written in Russian accessible to them. ...
... The two USA studies (Eckemoff et al., 2018;Smith et al., 2009) found that cultural barriers and racial discrimination led to mistrust for the clinical care system. The hospice staff confirmed that the care provided to CaLD was not up to standard, stating that communication with patients was the main reason for providing "substandard" care (Smith et al., 2009). ...
... Cultural and communication barriers as well as collective decision making, are precursors to individuals preferring to be cared for at home and families wanting to care for their loved ones (Eckemoff et al., 2018;Shanmugasundaram & O'Connor, 2009). While some acknowledge that assistance from EOL care service provider organizations would be the best way to care for their loved ones at home, most immigrants feel it is their obligation and honor to provide EOL care to their family member (Eckemoff et al., 2018;Shanmugasundaram & O'Connor, 2009). ...
Palliative and End-of-Life Care Access for Immigrants Living in High-income Countries: A Scoping Review
Article
Full-text available
  • Nov 2023
This scoping review aimed to explore what is known about palliative and End-of-Life (EOL) care access by immigrants with culturally and linguistically diverse (CALD) background living in high-income Organization for Economic Co-operation and Development (OECD) countries. CaLD immigrants have low utilization of palliative care services with patients’ family members taking up the role of caring, leading to immigrants not fully benefiting from the specialized services that are offered to alleviate suffering and promote quality of life. While there is some research in this area mainly in Europe, it cannot be said about all high-income OECD countries. Achieving person-centered care in high-income countries, requires identifying and addressing barriers to care access, especially by immigrants with CaLD background. Five-stage methodological framework by Arksey and O’Malley was used to undertake the review. Immigrants in OECD countries experience challenges in accessing palliative and EOL care services. The review also identified limited literature on the subject and establishes need for more research on the subject.
View
... Green et al. [38] noted that interpreters tend only to be requested for more formal discussions around issues such as consent. Difficulties also existed when using telephone interpreter services with inadequacies of a relay conversation [37], difficulty with hearing [49] and the missing of non-verbal cues [45,46] evident. Practitioners reported using interpreters infrequently, citing the need for advance planning and reported that in general, families preferred to interpret for themselves [34,37,38,45]. ...
... Difficulties also existed when using telephone interpreter services with inadequacies of a relay conversation [37], difficulty with hearing [49] and the missing of non-verbal cues [45,46] evident. Practitioners reported using interpreters infrequently, citing the need for advance planning and reported that in general, families preferred to interpret for themselves [34,37,38,45]. The use of family interpreters raised concerns regarding the burden it may place on family members and the extent of the information conveyed [34-38, 45, 48, 53, 55, 57]. ...
... While practitioners rated communication to be either moderate or good [34,35] concerns existed regarding the content of translated information relayed to the patient as patients sometimes did not understand a particular issue but are reluctant to seek clarification [49]. Communicating in the patients' preferred language is both an ethical and licencing responsibility [37,38]. The importance of making connections with patients and families to forge relationships is documented in all studies. ...
Healthcare practitioners’ perspectives of providing palliative care to patients from culturally diverse backgrounds: a qualitative systematic review
Article
Full-text available
  • Nov 2023
  • BMC Palliat Care
Background Palliative care practitioners are increasingly caring for patients and families from diverse cultural backgrounds. There is growing awareness of the influence of culture on many aspects of care in the palliative phase of an illness. However, disparities have been noted in the provision of palliative care to patients from culturally diverse backgrounds and challenges have been reported in meeting their needs and those of their families. Method A qualitative systematic review of research papers identified through searching four databases. Papers were screened against inclusion criteria within the timeframe of January 2012 to March 2022. Data was extraction from all included studies and methodological quality assessed utilising the Critical Appraisal Skills Programme Tool. Thematic analysis followed Braun and Clarke’s framework and the review is reported in line with PRISMA guidelines. Findings The search yielded 1954 results of which 26 were included for appraisal and review. Four themes were identified: communication and connection, the role of the family in death and dying, the role of education in addressing uncertainty, and institutional and societal factors. The findings highlighted challenges of communication and a fear of acting in a culturally insensitive way, the pivotal role of the family, the need for an individualised approach to care, the universality of needs when approaching end of life and the need for education of practitioners. Conclusion These findings suggest that healthcare practitioners draw on their existing skills to adapt their practice to meet the needs of patients from culturally diverse backgrounds. However, results also indicate a need for further education and identification of educational approaches best suited to supporting healthcare professionals in practice.
View
... Differences between European countries are seen in areas such as decision-making processes in spiritual and religious matters, family presence, ethics, care, decision-making, autonomy, and the organization of care for the dying patient [9]. Although the staff may have training and experience in caring for people of varying origins, it is still experienced as challenging to care for and be aware of specific cultural factors and how these can affect different care needs at the end of life [19,20]. These studies also support the requirement to be culturally competent and respect the patient's preferences. ...
The meaning of culture in nursing at the end of life – an interview study with nurses in specialized palliative care
Article
Full-text available
  • Jul 2024
  • BMC Palliat Care
Background The countries of the world are becoming increasingly multicultural and diverse, both as a result of growing migration, of people fleeing countries at war but also due to increased mobility related to labour immigration. Culture is a broad concept where the definitions focus on learned and shared values, traditions, and beliefs of a group of individuals. People’s culture affects health and perceptions of illness as well as treatment, symptoms, and care. Moreover, people who are at the end of life, live and exist within all levels and contexts of care. Specialized palliative care requires that the nurse has sufficient knowledge and skills to be responsible for meeting the patient’s nursing needs also on a cultural level, regardless of cultural affiliation. The aim of the study was to highlight nurses’ experiences of the meaning of culture when caring for patients at the end of life in specialized palliative care. Methods The study was conducted with a qualitative design and inductive approach. Semi-structured interviews were conducted with twelve nurses in western Sweden. Data were analysed using qualitative content analysis. Results The nurses had an awareness of culture as a phenomenon and how it affected palliative care at the end of life. The results showed two categories, Awareness of the impact of culture on nursing and Culture’s impact and influence on the nurse’s mindset and approach, consisting of seven subcategories that highlight the nurse’s experience. It emerged that there are differences between cultures regarding notions of dying and death, who should be informed, and treatments. There were also challenges and emotions that arose when cultural preferences differed among everyone involved. A person-centred approach allowed for recognition of the dying person’s culture, to meet diverse cultural needs and wishes. Conclusion Providing culturally competent care is a major challenge. There are often no routines or methods prescribed for how nurses should relate to and handle the diversity of cultural notions that may differ from the values and cornerstones of palliative care. Having a person-centred approach as strategy can help to better manage the situation and provide equitable care on terms that respect cultural diversity.
View
... Despite the influx of immigrants from the countries of the former USSR, very few empirical studies have addressed this population in the US and elsewhere (Amburg et al., 2022;Eckemoff et al., 2018;Kostareva et al., 2020). With increasing numbers of immigrants from the countries of the FSU (U.S. Census Bureau, 2019), the health needs of this group will require the attention of registered nurses and midwives, and other groups of health professionals within receiving countries. ...
View
A Scoping Review of Acculturation Challenges of Immigrants From the Former Soviet Union in the United States From a Life Course Perspective
Article
  • Feb 2025
  • FAM SOC
The United States is home to over a million former Soviet Union (FSU) immigrants, yet literature on their familial dynamics and mental health and well-being is scarce. Following Arksey and O’Malley’s framework, this scoping review synthesizes literature since 1990 about FSU immigrants’ acculturation and well-being across 10 databases. The scoping review included 39 studies. The selected articles revealed three themes: (a) maintaining cultural and ethnic identity across generations during acculturation, (b) generational differences in navigating acculturation challenges, and (c) mental health challenges among FSU immigrants. Differences in managing immigration and acculturation events were noted across generations and genders. FSU immigrants face unique acculturation challenges. Future research should explore gender-based violence, mental health, relationship between economic progress and acculturative stress, and more comprehensive adaptation strategies to improve their socioeconomic, emotional, and relational well-being.
View
View
People of Ukrainian Heritage
Chapter
  • Oct 2024
Ukraine is the second-largest European country by area in Eastern Europe. Ethnic Ukrainians belong to the Slavic nationality group. The capital of Ukraine is Kyiv. The national groups residing in Ukraine include Ukrainians, Russians, Belarusians, Bulgarians, Crimean Tatars, Moldovans, Jews, and Hungarians. Russians account for about a sixth of Ukraine’s population. Most of the people in the Crimean Peninsula are of Russian ethnicity. Ukraine is one of the world’s leading farming regions. During A.D. 800s, Kyiv became the center of a Slavic state that modern historians call Kievan Rus (also spelled Kyivan Rus). Parts of Ukraine were under Polish, Lithuanian, and Austrian control until the late 1700s, when almost all of Ukraine came under Russian control. In 1922, Ukraine became one of the four original republics of the Soviet Union (USSR), but in 1991, Ukraine declared its political independence from the USSR. Ukraine has a significant history of movement for national independence with strong aspirations to join the European Union in recent years. During the post-Soviet period, some Ukrainian citizens left the country for economic reasons and have been working abroad and supporting families at home. In 2014, Maidan Revolution in Kyiv led to the removal of the Ukrainian president from office and the beginning of civilian unrest in the Eastern part of the country and Crimea. In February 2022, the Russia–Ukraine war started, contributing to millions of Ukrainian citizens escaping war zone and significant number of citizens volunteered joining military units on the front line or at the local territorial defense units. A new wave of Ukrainian immigrants to the United States comprised of younger generation Ukrainians who are usually well-educated or have good vocational skills. Many are proficient in English and can find gainful employment upon arrival in the United States. Recently immigrated Ukrainians may have higher level of medical and psychological needs due to exposure to war (Popova and Shevel 2024).
View
People of Russian Heritage
Chapter
  • Oct 2024
This chapter on Russians focuses on the cultural beliefs, values, and practices of people of Russian heritage. An extensive Russian history is presented to educate the reader about the complexity of the Russian Revolution, the challenges of the Soviet era, and the current formation of independent countries. Even though there are many ethnic groups who have emigrated from Russia and other Russian independent countries, the emphasis is given to the Russian population living in the United States and other countries. This chapter follows the dominant values and beliefs according to the 12 domains of the Purnell Model for Cultural Competence: overview/heritage, communication, family roles and organization, workforce issues, biocultural ecology, high-risk behaviors, nutrition, pregnancy, death rituals, spirituality, health-care practices, and health-care practitioners.
View
YAŞLILIK VE YAŞLANMA Yazıları Editör Azime ARISOY
Chapter
Full-text available
  • Jan 2022
Öz Savaş, afet, çatışma gibi olaylardan en fazla dezavantajlı gruplar (yaşlı, engelli, çocuk, kadın, göçmen, vs.) etkilenmektedir. Yaşlılar, kırılgan ve naif dezavantajlı gruplar arasında önemli bir yer tutmaktadır. Hem yaşlı hem de göçmen olmak dezavantajlılık durumunu arttırmaktadır. Bu çalışmanın amacı yaşlı göçmenleri değerlendirmektir. Literatürde; “Yaşlı Göçmen”, beş farklı şekilde karşımıza çıkmaktadır. İlkinde; Yaşlı bireyler, yoksul kırsal bölgelerden genç yaşlardayken daha iyi eğitim alma, iş bulma gibi nedenlerle göç ettiği ülkede yaşlanmıştır. Yani daha önce üretime katkı sağlayan işgücü iken artık bağımlı nüfusa dâhil olmuştur. İkincisinde; Genç yaşta çalışmak için geldikleri ülkeden emekli olunca anavatanlarına göçüp yaşlılık yıllarını memleketinde geçirmek isteyen emekli göçü söz konusudur. Üçüncüsü; emeklilik maaşı düşük olan, büyükşehrin trafik, kalabalık ve pahalılığından kurtulmak isteyen yaşlı bireylerin geçimlerini daha rahat sağlayabilecekleri kırsal bölgelere göçüdür. Dördüncüsü; Yaşlılık dönemlerini çocuklarının yanında geçirmek, daha iyi tedavi olanaklarından faydalanmak ve savaştan uzaklaşmak gibi nedenlerle yapılan göçtür. Beşincisi ise Gelişmiş ülkelerdeki emeklilik geliri yüksek yaşlı bireylerin, emekli cenneti olarak tabir edilen, tabiat ve iklim şartları daha güzel coğrafyalarda emekliliğin tadını çıkarma hayallerini gerçekleştirmek amacıyla yapılan göç hareketidir. Göç, hem göç eden birey bakımından hem de göç alan yer bakımından çeşitli etkileri olan bir olgudur. Bu çalışmada; öncelikle yaşlılık kavramına, dünyada, Avrupa’da ve Türkiye’de hızlı demografik değişime ve göçe ilişkin verilerine yer verilmektedir. Son olarak da yaşlı göçmenlerle ilgili verilere ve literatürde yapılmış çalışmalara değinilmektedir. Anahtar Kelimeler: Yaşlılık, Göç, Göçmen, Yaşlı Göçmen
View
View
Reducing Confusion about Grounded Theory and Qualitative Content Analysis: Similarities and Differences
Article
Full-text available
  • Aug 2014
Although grounded theory and qualitative content analysis are similar in some respects, they differ as well; yet the differences between the two have rarely been made clear in the literature. The purpose of this article was to clarify ambiguities and reduce confusion about grounded theory and qualitative content analysis by identifying similarities and differences in the two based on a literature review and critical reflection on the authors’ own research. Six areas of difference emerged: (a) background and philosophical base, (b) unique characteristics of each method, (c) goals and rationale of each method, (d) data analysis process, (e) outcomes of the research, and (f) evaluation of trustworthiness. This article provides knowledge that can assist researchers and students in the selection of appropriate research methods for their inquiries. Copyright 2014: Ji Young Cho, Eun-Hee Lee, and Nova Southeastern University.
View
Rigor in Qualitative Social Work Research: A Review of Strategies Used in Published Articles
Article
Full-text available
  • Mar 2011
This study was conducted to describe strategies used by social work researchers to enhance the rigor of their qualitative work. A template was developed and used to review a random sample of 100 articles drawn from social work journals listed in the 2005 Journal Citation Reports: Science and Social Sciences Edition. Results suggest that the most commonly applied strategies were use of a sampling rationale (67%), analyst triangulation (59%), and mention of methodological limitations (56%); the least common were negative or deviant case analysis (8%), external audit (7%), and specification of ontology (6%). Of eight key criteria, researchers used an average of 2.0 (SD = 1.5); however, the number used increased significantly between 2003 and 2008. The authors suggest that for this trend to continue, social work educators, journal editors, and researchers must reinforce the judicious application of strategies for enhancing the rigor of qualitative work.
View
Challenges to effective cancer control in China, India, and Russia
Article
Full-text available
  • Apr 2014
Cancer is one of the major non-communicable diseases posing a threat to world health. Unfortunately, improvements in socioeconomic conditions are usually associated with increased cancer incidence. In this Commission, we focus on China, India, and Russia, which share rapidly rising cancer incidence and have cancer mortality rates that are nearly twice as high as in the UK or the USA, vast geographies, growing economies, ageing populations, increasingly westernised lifestyles, relatively disenfranchised subpopulations, serious contamination of the environment, and uncontrolled cancer-causing communicable infections. We describe the overall state of health and cancer control in each country and additional specific issues for consideration: for China, access to care, contamination of the environment, and cancer fatalism and traditional medicine; for India, affordability of care, provision of adequate health personnel, and sociocultural barriers to cancer control; and for Russia, monitoring of the burden of cancer, societal attitudes towards cancer prevention, effects of inequitable treatment and access to medicine, and a need for improved international engagement.
View
Integrative Review of the Literature on Hispanics and Hospice
Article
  • Sep 2017
The provision of optimal end-of-life care to Hispanics receiving hospice care requires familiarity with hospice-specific variables. For example, a preference for nondisclosure of terminal prognosis in some Hispanics is incongruous with traditional hospice practice. In addition, the Spanish word for hospice, "hospicio," has negative connotations about abandonment of loved ones. Added to cultural considerations are socioeconomic considerations. Many marginalized Hispanic individuals may experience distinct challenges when enrolling in hospice due to socioeconomic hardships relating to poverty, citizenship, and lack of insurance. This systematic integrative review examines the research literature on Hispanics and hospice to report on the state of the science for this topic. Reviewed articles were identified systematically using computer research databases and inclusion and exclusion criteria. Of the 21 reviewed articles, many are survey and low-inference qualitative designs with limited validity and trustworthiness. Most survey instruments were not validated for Spanish language or Hispanic culture. None of the qualitative studies included theoretical sampling or follow-up interviews. Few study designs considered heterogeneity within the Hispanic population. Interpreting results cautiously, there is evidence that some Hispanics find some satisfaction with hospice care in spite of cultural incongruities and socioeconomic challenges. Future research calls for intervention studies and high-inference qualitative designs to gain insight into hospice experiences and what constitutes quality hospice care from the perspectives of Hispanic subgroups. Assessing quality and designing interventions for these end-of-life cultural and socioeconomic issues will improve end-of-life care and facilitate the hospice philosophy of promoting emotional growth at end of life.
View
Epidemiology And Patterns Of Care At The End Of Life: Rising Complexity, Shifts In Care Patterns And Sites Of Death
Article
  • Jul 2017
In 2015 an estimated 2.7 million people in the United States (1 percent of the population) died. Although decedents' illness experience varies substantially, important trends in care at the end of life are evident. To identify the most pressing health care policy issues related to end-of-life care, we present a comprehensive picture of the epidemiology and care patterns of people in the last stage of life. We identify three key trends in end-of-life care: increasing diversity in the primary diagnoses of decedents, increases in multimorbidity and illness complexity among people with terminal illnesses, and shifts in patterns of care at the end of life and in sites of death. This changing epidemiology of those in the last phase of life puts new pressures on the Medicare hospice benefit to ensure the availability of high-quality end-of-life care. In addition, health care policy makers must grapple with the fact that even with increasing use of hospice care, care intensity increases at the end of life. We highlight and discuss tensions that must be managed to ensure that high-quality care is accessible for people at the end of life. © 2017 Project HOPE-The People-to-People Health Foundation, Inc.
View
View
Just Ask: Hospice Familiarity in Asian and Hispanic Adults
Article
  • Dec 2014
  • J PAIN SYMPTOM MANAG
Previous research documents the under-utilization of hospice services by minority ethnic groups, but less data exist for Asian and Hispanic Americans. It is unclear whether these low utilization rates are a result of attitudinal or information barriers, or both. To examine self-reported familiarity and attitudes towards hospice among Asian and Hispanic groups in ethnically diverse Queens County, NY. We surveyed diverse adults during health fairs, at senior centers and church programs directed at ethnic populations. Respondents completed surveys in their preferred language: Spanish, Chinese (Mandarin), and Korean. Analysis of variance was used to compare continuous variables among language groups; Fisher's exact test compared categorical variables. A total of 604 community adults were surveyed: 99 Chinese, 349 Korean, 156 Spanish. Respondents were mostly female, average age 53 years. Familiarity with hospice varied significantly among the groups (P<0.001), and was lower in the Hispanic (16%) and higher in the Chinese (45%) and Korean (56%) groups. Personal experiences with hospice were low (8-16%) in all groups. A majority (75-94%) responded they would share hospice information with loved ones, but the Hispanic group was significantly less likely to do so, compared with Chinese and Korean Americans. Between 74-95% reported willingness to receive future information about hospice, but the Korean group was significantly less likely to want information. When surveyed in their preferred language, Asian and Hispanic adults reported variable levels of familiarity with hospice services. Most responded positively to receiving future information and would tell friends and family members about hospice. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
View
Sampling in Interview-Based Qualitative Research: A Theoretical and Practical Guide
Article
  • Jan 2014
Sampling is central to the practice of qualitative methods, but compared with data collection and analysis its processes have been discussed relatively little. A four-point approach to sampling in qualitative interview-based research is presented and critically discussed in this article, which integrates theory and process for the following: (1) defining a sample universe, by way of specifying inclusion and exclusion criteria for potential participation; (2) deciding upon a sample size, through the conjoint consideration of epistemological and practical concerns; (3) selecting a sampling strategy, such as random sampling, convenience sampling, stratified sampling, cell sampling, quota sampling or a single-case selection strategy; and (4) sample sourcing, which includes matters of advertising, incentivising, avoidance of bias, and ethical concerns pertaining to informed consent. The extent to which these four concerns are met and made explicit in a qualitative study has implications for its coherence, transparency, impact and trustworthiness.
View
Facilitating advance care planning with ethnically diverse groups of frail, low-income elders in the USA: Perspectives of care managers on challenges and recommendations
Article
This study examined care managers' perspectives on facilitating advance care planning (ACP) with ethnically diverse elders enrolled in a managed long-term care programme that coordinates medical and long-term care for frail, poor elders in the USA. Seven in-depth interviews and two focus groups were conducted with 24 lead supervisors and care managers of care management teams between July and August 2008; data were analysed with qualitative thematic analysis method. Participants identified four main sources of challenges: death and dying are taboo discussion topics; the dying process is beyond human control; family and others hold decision-making responsibility; and planning for death and dying is a foreign concept. Participants' recommendations to address these challenges were to develop trust with elders over time; cultivate cultural knowledge and sensitivity to respect value orientations; promote designating a healthcare proxy; recognise and educate families and community leaders as critical partners in ACP and provide practical support as needed throughout the illness experience. These findings suggest important practice implications for care managers working with increasingly diverse cultural groups of elders at the end of life.
View