Indigenous people's experiences at the end of life

2015 ◽  
Vol 13 (6) ◽  
pp. 1721-1733 ◽  
Author(s):  
Wendy Duggleby ◽  
Samantha Kuchera ◽  
Rod MacLeod ◽  
Paul Holyoke ◽  
Tracy Scott ◽  
...  
Keyword(s):  
Qualitative Research ◽  
End Of Life ◽  
Indigenous Peoples ◽  
Life Experiences ◽  
The United States ◽  
Indigenous Populations ◽  
Future Research ◽  
Significant Finding ◽  
Inclusion Criteria ◽  
Comprehensive Search

ABSTRACTObjective:The primary purpose of this metasynthesis study was to explore the end-of-life experiences of Indigenous peoples by synthesizing the findings of qualitative research.Method:Sandelowski and Barroso's methodology for synthesizing qualitative research was used and included (a) a comprehensive search, (b) appraising reports of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. Research team members guided this process. This team was multidisciplinary and included Indigenous and non-Indigenous researchers from Canada, Australia, New Zealand, and the United States. Following a comprehensive search, 2255 studies were reviewed and assessed against five inclusion criteria: (a) studies on the experiences of Indigenous populations (all genders, 18 + years of age) at the end of life, (b) studies published in English from any country, (c) studies using qualitative and mixed-methods designs, and (d) studies published between 1993 and 2013.Results:Some 18 studies met the inclusion criteria, and their findings were synthesized. “Preparing the spirit” for transition to the next life was the overarching theme. “Preparing the spirit” occurred within the context of “where we come from.” Processes involved in “preparing the spirit” were healing, connecting, and protecting; through these processes, “what I want at the end of life” was realized. Although not the focus of the metasynthesis, a significant finding was that the studies reviewed identified very clear barriers within healthcare systems and current healthcare provider practices to “preparing the spirit.”Significance of results:The findings provide a beginning understanding of the end-of-life experiences of Indigenous peoples and a foundation for future research. More interpretive qualitative research is critical if palliative care services, the healthcare system, and healthcare providers are to reduce current barriers to “preparing the spirit” for the journey at the end of life.

scholarly journals Death, Dying, and End-of-Life Experiences Among Refugees: A Scoping Review

2018 ◽  
Vol 34 (2) ◽  
pp. 139-144 ◽  
Author(s):  
Farah Madi ◽  
Hussein Ismail ◽  
Fouad M. Fouad ◽  
Hala Kerbage ◽  
Shahaduz Zaman ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
Life Experiences ◽  
Death And Dying ◽  
Future Research ◽  
Inclusion Criteria ◽  
Life Challenges ◽  
High Commissioner ◽  
Final Settlement

Background: The objective of this scoping review is to identify and map the global literature on death, dying, and end-of-life experiences among refugees. The study aims at identifying gaps in the literature produced on the topic and informs areas for future research in the field. Methods: We included articles that met the following inclusion criteria: (1) Population: Refugees and/or internally or externally displaced individuals due to wars, conflicts, nonnatural disasters, or emergencies; (2) Setting: End-of-life phase, dying, and death that took place following the refuge or displacement and reported after the year 1980; and (3) Study Design: All types of studies including but not limited to primary studies, narrative reviews, systematic reviews, news, editorials, commentaries, opinion pieces, technical reports, and policy briefs. A systematic search of the following electronic databases: Medline, Scopus, CINAHL, and JSTOR yielded 11 153 records. The search of the United Nations High Commissioner for Refugees database Refworld retrieved an additional 7510 records. Results: Seven articles met our inclusion criteria. All articles were coauthored by scholars in universities/research institutes in high-income countries, and except for one, all were conducted in the country of the final settlement of refugees. One article adopted a qualitative approach, another article adopted a mixed-methods approach, one was a narrative review, and 4 articles were reviews of the literature. Three articles discussed access to medical/palliative care among older refugees, and 3 others addressed bereavement and death arrangements. Moreover, one article examined how transmigration and previous experiences from 2 cultural settings in home countries affect the contemplation of death and dying. Implications: Research on end-of-life experiences among refugees is sorely lacking. This study raises awareness of the need for empirical data on end-of-life challenges and palliative care among refugees, thus equipping humanitarian agencies with a more explicit and culturally sensitive lens targeting those with life-limiting conditions.

scholarly journals Traditional Food Energy Intake Among Indigenous Populations in Select High-Income Settler Colonized Countries: A Systematic Literature Review

2020 ◽  
Author(s):  
Julia McCartan ◽  
Emma van Burgel ◽  
Isobelle McArthur ◽  
Sharni Testa ◽  
Elisabeth Thurn ◽  
...  
Keyword(s):  
Energy Intake ◽  
Indigenous Peoples ◽  
Primary Outcome ◽  
The United States ◽  
Outcome Data ◽  
High Income ◽  
Indigenous Populations ◽  
Traditional Food ◽  
Food Energy ◽  
Settler Colonization

Abstract The traditional diets of Indigenous Peoples globally have undergone major transition due to settler colonization. This systematic review aims to provide a perspective of traditional food intake of Indigenous populations in high-income countries with a history of settler colonization. For inclusion, studies reported the primary outcome of interest: traditional food contribution to total energy intake (%E) and occurred in Canada, the United States (including Hawaii and Alaska), New Zealand, Australia and/or Scandinavian countries. Primary outcome data were reported and organized by date of data collection by country. Forty-nine articles published between 1987 and 2019 were identified. Wide variation in contribution of traditional food to energy was reported. A trend for decreasing traditional food energy intake over time was apparent; however, heterogeneity in study populations and dietary assessment methods limited conclusive evaluation of this. This review may inform cross-sectoral policy to protect the sustainable utilization of traditional food for Indigenous Peoples.

scholarly journals A Mixed Research Synthesis of Literature on Teaching Qualitative Research Methods

SAGE Open ◽  
2019 ◽  
Vol 9 (3) ◽  
pp. 215824401986148 ◽  
Author(s):  
Claire Wagner ◽  
Barbara Kawulich ◽  
Mark Garner
Keyword(s):  
Qualitative Research ◽  
Research Methods ◽  
Research Synthesis ◽  
The United States ◽  
Learning Opportunities ◽  
Qualitative Research Methods ◽  
Paradigm Shifts ◽  
Inclusion Criteria ◽  
Personal Transformations ◽  
Approach To Teaching

This article surveys the literature from 1999 to 2013 on teaching qualitative research methods. One hundred thirteen articles fitted the inclusion criteria; 79 of these were by academics in the United States and Canada. Only 39 of the 113 were based on empirical research: from these, seven descriptive themes were distilled, of which the dominant ones are experiential learning and practice-based materials and workshops. The literature portrayed teaching qualitative research as providing experiential and practice-based learning opportunities for students that revealed its desirable pedagogical features. It further reported that when students engaged in learning experiences, they underwent paradigm shifts about qualitative research as well as personal transformations. Our study confirmed that there is a lack of a research-based approach to teaching qualitative methods and we recommend that more be done to contribute to its pedagogical culture particularly concerning methods used to evaluate instruction, innovative instructional methods, and approaches to assessment.

Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents

2020 ◽  
Vol 37 (12) ◽  
pp. 1009-1015
Author(s):  
Laura K. Sedig ◽  
Jessica L. Spruit ◽  
Trisha K. Paul ◽  
Melissa K. Cousino ◽  
Harlan McCaffery ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Health Care Providers ◽  
Life Experiences ◽  
The United States ◽  
Parental Perception ◽  
Care Providers ◽  
Supportive Services ◽  
Bereaved Parents ◽  
Actual Decision

Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child’s life. This study asked bereaved parents to reflect on their child’s end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking. Methods: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017. Results: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child’s life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making ( P = .002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful. Conclusions: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified.

End-of-Life Preferences in Afro-Caribbean Older Adults: A Systematic Literature Review

2014 ◽  
Vol 69 (3) ◽  
pp. 271-282 ◽  
Author(s):  
Karen O. Moss ◽  
Ishan C. Williams
Keyword(s):  
Older Adults ◽  
Cultural Identity ◽  
End Of Life ◽  
Healthcare Providers ◽  
Black Population ◽  
The United States ◽  
Future Research ◽  
End Of Life Decisions ◽  
Caribbean Immigrants ◽  
The Cost

Research suggests that older Blacks tend to prefer more aggressive treatment as they transition toward the end of life. African and Afro-Caribbean immigrants and their offspring are the fastest growing segments of the Black population in the United States. With the increasing population of Black older adults, the cost of end-of-life care is rising. This article presents a review of the literature on the end-of-life preferences of Afro-Caribbean older adults. Findings suggest that Afro-Caribbean older adults make end-of-life decisions with a significant emphasis on family structure, religion/spirituality, cultural identity, migration, and communication. Concerns regarding the meaning of end-of-life preparation and hospice are often viewed in ways that differ from that of healthcare providers. Future research is needed to investigate this process in the Afro-Caribbean older adult subset.

scholarly journals Help-Seeking Behavior in Victims of Elder Abuse: A Systematic Review

2019 ◽  
pp. 152483801986061 ◽  
Author(s):  
Silvia Fraga Dominguez ◽  
Jennifer E. Storey ◽  
Emily Glorney
Keyword(s):  
Help Seeking ◽  
Elder Abuse ◽  
Future Research ◽  
Narrative Synthesis ◽  
Help Seeking Behavior ◽  
Inclusion Criteria ◽  
Research Gaps ◽  
Service Engagement ◽  
Seeking Behavior ◽  
Comprehensive Search

Elder abuse has become increasingly relevant for intervention and study in the context of an aging population. One of the major barriers to progress in the field is underreporting of elder abuse by victims. This systematic literature review aimed to synthesize the available findings regarding victims’ help-seeking behavior to inform practice, understand the limits of the evidence, and identify research gaps. A comprehensive search of published and unpublished literature was undertaken, and studies were included if they addressed help-seeking behavior from the perspective of elder abuse victims aged 60 and older. A total of 19 studies met inclusion criteria for review. Findings are presented as a narrative synthesis organized according to help-seeking barriers, facilitators, sources of help, the responses of others, and the characteristics of victims more likely to seek help. Although barriers and sources of help received detailed attention across all studies, findings regarding victim characteristics and facilitators for and responses to help-seeking were limited. The results suggest that there are many barriers to help-seeking and that some victims only seek help when the abuse is perceived as unbearable or they fear for their safety. Results are discussed in relation to implications for intervention, including suggestions to enhance help-seeking behavior. Future research should identify facilitators of help-seeking among victims of elder abuse and victim characteristics associated with early disclosure. Research efforts should frame help-seeking as a continuing process and study ways in which the responses of others may impact future help-seeking or service engagement.

Culturally Relevant Palliative and End-of-Life Care for U.S. Indigenous Populations: An Integrative Review

2017 ◽  
Vol 29 (2) ◽  
pp. 180-191 ◽  
Author(s):  
Mary J. Isaacson ◽  
Anna R. Lynch
Keyword(s):  
End Of Life ◽  
Cultural Awareness ◽  
The United States ◽  
Integrative Review ◽  
Indigenous Populations ◽  
Discovery Service ◽  
Design Databases ◽  
State Of The Science ◽  
Eol Care ◽  
Key Terms

Purpose:American Indians/Alaska Natives (AIs/ANs) have higher rates of chronic illness and lack access to palliative/end-of-life (EOL) care. This integrative review ascertained the state of the science on culturally acceptable palliative/EOL care options for Indigenous persons in the United States. Design: Databases searched: CINAHL, PubMed/MEDLINE, SocINDEX, PsycINFO, PsycARTICLES, ERIC, Health Source: Nursing/Academic Edition, and EBSCO Discovery Service 1880s-Present. Key terms used: palliative care, EOL care, and AI/AN. Inclusion criteria: peer-reviewed articles published in English. Findings/Results: Twenty-nine articles were identified, 17 remained that described culturally specific palliative/EOL care for AIs/ANs. Synthesis revealed four themes: Communication, Cultural Awareness/Sensitivity, Community Guidance for Palliative/EOL Care Programs, Barriers and two subthemes: Trust/Respect and Mistrust. Discussion/Conclusion: Limitations are lack of research funding, geographic isolation, and stringent government requirements. Palliative/EOL care must draw on a different set of skills that honor care beyond cure provided in a culturally sensitive manner.

Black Youth and African-Centered Interventions: A Systematic Review

2021 ◽  
pp. 104973152110033
Author(s):  
Husain Lateef ◽  
Emmanuel O. Amoako ◽  
Portia Nartey ◽  
Jia Tan ◽  
Sean Joe
Keyword(s):  
Black Youth ◽  
The United States ◽  
Bibliographic Databases ◽  
Positive Outcomes ◽  
Inclusion Criteria ◽  
Full Inclusion ◽  
Methodological Rigor ◽  
African Centered ◽  
Comprehensive Search ◽  
High Standards

Purpose: This review discusses the effectiveness of African-centered interventions (ACIs) with Black youth. Methods: The authors conducted a comprehensive search of ACIs using electronic bibliographic databases to identify studies completed in the United States and reported in peer-reviewed journals. A total of 10 studies were identified that met the full inclusion criteria of the review. Results: Collectively, we found that ACIs are associated with positive outcomes in Black youths’ academic achievement, self-concept, cultural identity, and behaviors. However, there was a noteworthy amount of heterogeneity in studies’ methodological rigor. Discussion: The small number of studies identified support the need for additional research with high standards of methodological rigor to further determine the effectiveness of using ACIs over universal interventions with Black youth.

Caring for Dying Infants: A Systematic Review of Healthcare Providers’ Perspectives of Neonatal Palliative Care

2020 ◽  
pp. 104990912096594
Author(s):  
Susanny J. Beltran ◽  
Marie Nicole Hamel
Keyword(s):  
United States ◽  
End Of Life ◽  
Nurse Practitioners ◽  
End Of Life Care ◽  
Healthcare Providers ◽  
The United States ◽  
Future Research ◽  
Care Practice ◽  
Life Care ◽  
Provider Perspectives

Objectives: The palliative and hospice care movement has expanded significantly in the United States since the 1960s. Neonatal end of life care, in particular, is a developing area of practice requiring healthcare providers to support terminally ill newborns and their families, to minimize suffering at the end of the neonate’s life. This paper seeks to systematically summarize healthcare providers’ perspectives related to end of life, in order to identify needs and inform future directions. Methods: Informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, we systematically reviewed the literature discussing healthcare provider perspectives of neonatal end of life care ranging from year 2009 to 2020. To be included in the review, articles had to explicitly focus on perspectives of healthcare providers toward neonatal end of life care, be published in academic peer-reviewed sources, and focus on care in the United States. Results: Thirty-three articles were identified meeting all inclusion criteria. The literature covers, broadly, provider personal attitudes, experiences delivering care, practice approaches and barriers, and education and training needs. The experiences of physicians, physician assistants, nurse practitioners, and nurses are highlighted, while less is discussed of other providers involved with this work (e.g., social work, physical therapy). Conclusion: Future research should focus on developing and testing interventions aimed at training and supporting healthcare providers working with neonates at end of life, as well as addressing barriers to the development and implementation of neonatal palliative teams and guidelines across institutions.

scholarly journals Wellbeing of Indigenous Peoples in Canada, Aotearoa (New Zealand) the United States: A Systematic Review

2021 ◽  
Vol 18 (11) ◽  
pp. 5832
Author(s):  
Alana Gall ◽  
Kate Anderson ◽  
Kirsten Howard ◽  
Abbey Diaz ◽  
Alexandra King ◽  
...  
Keyword(s):  
United States ◽  
New Zealand ◽  
Indigenous Peoples ◽  
The United States ◽  
Indigenous Populations ◽  
Mortality And Morbidity ◽  
Health And Wellbeing ◽  
Search Terms ◽  
Aotearoa New Zealand ◽  
Full Text Screening

Despite the health improvements afforded to non-Indigenous peoples in Canada, Aotearoa (New Zealand) and the United States, the Indigenous peoples in these countries continue to endure disproportionately high rates of mortality and morbidity. Indigenous peoples’ concepts and understanding of health and wellbeing are holistic; however, due to their diverse social, political, cultural, environmental and economic contexts within and across countries, wellbeing is not experienced uniformly across all Indigenous populations. We aim to identify aspects of wellbeing important to the Indigenous people in Canada, Aotearoa and the United States. We searched CINAHL, Embase, PsycINFO and PubMed databases for papers that included key Indigenous and wellbeing search terms from database inception to April 2020. Papers that included a focus on Indigenous adults residing in Canada, Aotearoa and the United States, and that included empirical qualitative data that described at least one aspect of wellbeing were eligible. Data were analysed using the stages of thematic development recommended by Thomas and Harden for thematic synthesis of qualitative research. Our search resulted in 2669 papers being screened for eligibility. Following full-text screening, 100 papers were deemed eligible for inclusion (Aotearoa (New Zealand) n = 16, Canada n = 43, United States n = 41). Themes varied across countries; however, identity, connection, balance and self-determination were common aspects of wellbeing. Having this broader understanding of wellbeing across these cultures can inform decisions made about public health actions and resources.

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