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Accès aux soins palliatifs offerts au Canada et aux États-Unis : expérience des populations noires et latino-américaines – Étude de la portée
Abstract
Contexte : On ne saisit pas bien les obstacles auxquels les Noirs et les Latino-Américains au Canada et aux États-Unis se heurtent en attendant des soins palliatifs.
Objectifs : Nous avons mené une étude de la portée pour résumer la littérature relatant l’expérience des Noirs et des Latino-Américains désirant obtenir des soins palliatifs au Canada et aux États-Unis et faire ressortir les lacunes observées dans les travaux de recherche effectués jusqu’ici.
Conception et méthodologie : Nous avons suivi le cadre de revue de la littérature d’Arksey et d’O’Malley et utilisé la liste de vérification PRISMA-ScR. Les études de recherche primaire, qualitatives ou mixtes, menées au Canada ou aux États-Unis et publiées en anglais entre 2018 et 2025 ont été retenues. Les participants aux études étaient des Noirs ou des Latino-Américains de 18 ans et plus, atteints d’un cancer avancé, qui souhaitaient bénéficier de soins palliatifs. Nous avons également considéré des études menées auprès de membres de la famille, de fournisseurs de soins primaires ou de chefs de file communautaires dans ces populations, et interrogé Medline, EMBASE, CINAHL, PsycINFO, Scopus et la Bibliothèque Cochrane.
Méthodologie : L’examen des titres, des résumés et des textes intégraux de même que l’extraction des données ont été effectués par deux évaluateurs indépendants. Une analyse descriptive et thématique a été réalisée.
Résultats : Parmi les 579 articles trouvés, 8 études qualitatives ou mixtes ont été retenues. Aucun de ces articles n’a été publié au Canada. Les obstacles à l’accès aux soins palliatifs ont été regroupés autour de quatre thèmes : méfiance, entraves à la communication, fossés culturels entre patients et fournisseurs de soins et incidence des déterminants sociaux de la santé (statut socioéconomique peu enviable, précarité d’emploi, statut d’immigrant, lieu d’origine et racisme).
Conclusion : La revue de ces données qualitatives suggère que les populations racisées doivent surmonter des obstacles importants pour avoir accès aux soins palliatifs. Notre étude a permis de souligner l’absence de recherches sur les soins palliatifs auprès des populations racisées au Canada; d’où l’importance de creuser la question.
Mots-clés : soins palliatifs, Canada, États-Unis, accès aux soins de santé, déterminants sociaux de la santé, Noirs, Latino-Américains, recherche qualitative.
DOI:10.5737/23688076356814
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Alcaraz, K. I., Wiedt, T. L., Daniels, E. C., Yabroff, K. R., Guerra, C. E., & Wender, R. C. (2019). Understanding and addressing social determinants to advance cancer health equity in the United States: A blueprint for practice, research, and policy. CA: A Cancer Journal for Clinicians, 70(1), 31–46. https://doi.org/10.3322/caac.21586
Algu, K., Wales, J., Anderson, C., Omilabu, M., Briggs, T., & Murahashi, A. M. (2024). Naming racism as a root cause of inequities in palliative care research: A scoping review. BMC Palliative Care, 23, Article 143. https://doi.org/10.1186/s12904-024-01465-9
American Association for Cancer Research. (2024). AACR Cancer Disparities Progress Report 2024. https://cancerprogressreport.aacr.org/wp-content/uploads/sites/2/2024/05/AACR_ CDPR__2024.pdf
Anandarajah, G., Mennillo, M. R., Wang, S., DeFries, K., & Gottieb, J. L. (2023). Trust as a central factor in hospice enrollment disparities among ethnic and racial minority patients: A qualitative study of interrelated and compounding factors impacting trust. Journal of Palliative Medicine, 26(11), 1488–1500. https://doi.org/10.1089/jpm.2023.0090
Arksey, H., & O’Malley, L. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19–32. https://doi.org/10.1080/1364557032000119616
Aromataris, E., & Munn, Z. (Eds). (2020). JBI Manual for Evidence Synthesis. JBI. https://synthesismanual.jbi.global
Bandini, J. I., Schulson, L. B., Setodji, C. M., Williams. J., Ast, K., & Ahluwalia, S. C. (2023). “Palliative care is the only medical field that I feel like I’m treated as a person, not as a Black person”: A mixed-methods study of minoritized patient experiences with palliative care. Journal of Palliative Medicine, 26(2), 220–227. http://doi.org/10.1089/jpm.2022.0237
Bassah, N., Beranek, J., Kennedy, M., Onabadejo, J., & Santos Salas, A. (2024). Inequities in access to palliative and end-of-life care in the black population in Canada: A scoping review. International Journal for Equity Health, 23, Article 1. https://doi.org/10.1186/s12939-024-02173-9
Birkhäuer, J., Gaab, J., Kossowsky, J., Hasler, S., Krummenacher, P., Werner, C., & Gerger, H. (2017). Trust in health care professional and health outcome: A meta-analysis. PloS One, 12(2), e0170988. https://doi.org/10.1371/journal.pone.0170988
Cain, C. L., Surbone, A., Elk, R., & Kagwa-Singer, M. (2018). Culture and palliative care: Preferences, communication, meaning, and mutual decision making. Journal of Pain and Symptom Management, 55(5), 1408–1419. https://doi.org/10.1016/j.jpainsymman.2018.01 .007
Canadian Institute for Health Information. (2023). Access to Palliative Care in Canada. https://www.cihi.ca/sites/default/files/document/access-to-palliative-care-in-canada-2023report-en.pdf
Canadian Partnership Against Cancer. (2014). Examining disparities in cancer control: A system performance special focus report. https://s22457.pcdn.co/wp-content/uploads/2019/01/Examining-disparities-in-cancer-control-EN.pdf
Castañeda, H., Holmes, S. M., Madrigal, D. S. and DeTrinidad Young, M. E., Beyeler, N., & Quesada, J. (2015). Immigration as a social determinant of health. Annual Review of Public Health, 18(36), 275–292. https://doi.org/10.1146/annurev-publhealth-032013-182419
Castillo, R. J., & Guo, K. L. (2011). A framework for cultural competence in health care organizations. Health Care Management, 30(3), 205–214. https://doi.org/10.1097/HCM.0 b013e318225dfe6
Chandra, S., Mohammadnezhad, M., & Ward, P. (2018). Trust and communication in a doctor-patient relationship: A literature review. Journal of Health Care Communications, 3(3), Article 36. https://doi.org/10.4172/2472-1654.100146
Chu, A., Barbera, L., Sutradhar, R., Oz, E. U., O’Leary, E., & Seow, H. (2021). Association between end-of-life cancer care and immigrant status: A retrospective cohort study in Ontario, Canada. BMJ Open, 11(6), e042978. https://doi.org/10.1136/bmjopen-2020-042978
Commission on the Social Determinants of Health. (2008). Closing the gap in a generation: Health equity through action on the social determinants of health. World Health Organization. https://www.who.int/publications/i/item/WHO-IER-CSDH-08.1
Dang, B. N., Westbrook, R. A., Njue, S. M., & Giordano, T. P. (2017). Building trust and rapport early in the new doctor-patient relationship: A longitudinal qualitative study. BMC Medical Education, 17(1), 32. https://doi.org/10.1186/s12909-017-0868-5
Davies, J. M., Sleeman, K. E., Leniz, J., Wilson, R., Higginson, I. J., Verne, J., Maddocks, M., & Murtagh, F. E. (2019). Socioeconomic position and use of healthcare in the last year of life: A systematic review and meta-analysis. PloS Medicine, 16(4), e1002782. https://doi.org/10.1371/journal.pmed.1002782
de Vries, B., Gutman, G., Humble, Á., Gahagan, J., Chamberland, L., Aubert, P., Fast, J., & Mock, S. (2019). End-of-life preparations among LGBT older Canadian adults: The missing conversations. International Journal of Aging and Human Development, 88(4), 358–379. https://doi.org/10.1177/0091415019836738
Do, K, Y., Carpenter, W. R., Spain, P., Clark, J. A., Hamilton, R. J., Galanko, J. A., Jackman, A., Talcott, J. A., & Godley, P. A. (2010). Race, healthcare access and physician trust among prostate cancer patients. Cancer Causes & Control, 21(1), 31–40. https://doi.org/10.1007/s10552-009-9431-y
Escobedo, L. E., Cervantes, L., & Havranek, E. (2023). Barriers in healthcare for Latinx patients with limited English proficiency – A narrative review. Journal of General Internal Medicine, 38(5), 1264–1271. https://doi.org/10.1007/s11606-022-07995-3
Fang, M. L., Sixsmith, J., Sinclair, S., & Horst, G. (2016). A knowledge synthesis of culturally- and spiritually-sensitive end-of-life care: Findings from a scoping review. BMC Geriatrics, 16(1), Article 107. https://doi.org/10.1186/s12877-016-0282-6
Ferrell, B. R., Temel, J. S., Temin. S., Alesi, E. R., Balboni, T. A., Basch, E. M., Firn, J. I., Paice, J. A., Peppercorn, J. M., Tanyanika, P., Stovall, E. L., Zimmermann, C., & Smith, T. J. (2017). Integration of palliative care into standard oncology care: American Society of Clinical Oncology clinical practice guideline update. Journal of Clinical Oncology, 35(1), 96–112. https://doi.org/10/1200/JCO.2016.70.1474
Flieger, S. P., Chui, K., & Koch-Weser, S. (2020). Lack of awareness and common misconceptions about palliative care among adults: Insights from a national survey. Journal of General Internal Medicine, 35(7), 2059–2064. https://doi.org/10.1007/s11606-020-05730-4
Gardner, D. S., Doherty, M., Bates, G., Koplow, A., & Johnson, S. (2018). Racial and ethnic disparities in palliative care: A systematic scoping review. Families in Society: The Journal of Contemporary Social Services, 99(4), 301–316. https://doi.org/10.1177/1044389418 809083
Greene, J., & Samuel-Jakubos, H. (2021). Building patient trust in hospitals: A combination of hospital-related factors and health care clinician behaviors. Joint Commission Journal on Quality and Patient Safety, 47(12), 768–774. https://doi.org/10.1016/j.jcjq.2021.09.003
Glaser, J., Coulter, Y. Z., Thompson-Lastad, A., Castro-Smyth, L., Serrano, E., & Adler, S. R. (2020). Experiences of advanced breast cancer among Latina immigrants: A qualitative pilot study. Journal of Immigrant and Minority Health, 22(6), 1287–1294.
Gwede, C. K., Ashley, A. A., McGinnis, K., Montiel-Ishno, F. A., Standifer, M., Baldwin, J., Williams, C., Sneed, K. B., Wathington, D., Dash-Pitts, L., & Green, B. L. (2013). Designing a community-based lay health advisor training curriculum to address cancer health disparities. Health Promotion Practice, 14(3), 415–424. https://doi-org.login.ezproxy.library.ualberta.ca/10.1177/1524839912458675
Horvick, S., & Dias, N. (2024). Palliative care providers’ and administrators’ perspectives on integrating community-based palliative care using the social determinants of health framework. Palliative Medicine Reports, 5(1), 81–85. https://doi.org/10.1089/pmr.2023.0048
Islam, M. M. (2019). Social determinants of health and related inequalities: Confusion and implications. Frontiers in Public Health, 7, 11. https://doi.org/10.3389/fpubh.2019.00011
Johnson, K. S. (2013). Racial and ethnic disparities in palliative care. Journal of Palliative Medicine, 16(11), 1329–1334. https://doi.org/10.1089/jpm.2013.9468
Johnston, F. M., Neiman, J. H., Parmley, L. E., Conca-Cheng, A., Freund, K. M., Concannon, T. W., Smith, T. J., & Cooper, L. A. (2019). Stakeholder perspectives on the use of community health workers to improve palliative care use by African Americans with Cancer. Journal of Palliative Medicine, 22(3), 302–306. https://doi.org/10.1089/jpm.2018.0366
Kagawa-Singer, M., & Blackhall, L. J. (2001). Negotiating cross-cultural issues at the end of life: “You got to go where he lives”. JAMA, 286(23), 2993–3001. https://doi.org/10.1001 /jama.286.23.2993
Kangmennaang, J., Siiba, A., & Bisung, E. (2023). Does trust mediate the relationship between experiences of discrimination and health care access and utilization among minoritized Canadians during the COVID-19 pandemic? Journal of Racial and Ethnic Health Disparities, 11(6), 3561–3571. https://doi.org/10.1007/s40615-023-01809-w
Karapetyan, L., Dawani, O., & Laird-Fick, H. S. (2018). End-of-life care for an undocumented Mexican immigrant. Journal of Palliative Care, 33(2), 63–64. https://doi.org/10.1177/082 5859718759818
Kavalieratos, D., Corbelli, J., Zhang, D., Dionne-Odom, N. J., Ernecoff, N. C., Hanmer, J., Hoydich, Z. P., Ikejiani, D. Z., Klein-Fedyshin, M., Zimmerman, C., Morton, S. C., Arnold, R. M., Heller, L., & Schenker, Y. (2016). Association between palliative care and patient and caregiver outcomes: A systematic review and meta-analysis. JAMA, 316(20), 2104–2114. https://doi.org/10.1001/jama.2016.16840
Kim, K., Choi, J. S., Choi, E., Nieman, C. L., Joo, J. H., Lin, F. R., Gitlin, L. N., & Han, H. R. (2016). Interventions to improve chronic disease management and care among vulnerable populations: A systematic review. American Journal of Public Health, 106(4), 3–28. http://doi.org/10.2105/AJPH.2015.302987
Koroukian, S. M., Schiltz, N. K., Warner, D. F., Given, C. W., Schluchter, M., Owusu, C., & Berger, N. A. (2017). Social determinants, multimorbidity, and patterns of end-of-life care in older adults dying from cancer. Journal of Geriatric Oncology, 8(2), 117–124. https://doi.org/10.1016/j/jgo.2016.10.001.
Krishnamurthy, N., David, D., Odom, J. N., Mathelier, K., Lin, J. J., Smith, C., Peralta, M., Moorehead, D., & Mazor, M. (2024). “If we don’t speak the language, we aren’t offered the same opportunities”: Qualitative perspectives of palliative care access for women of color living with advanced breast cancer. SSM – Qualitative Research in Health, 5, 100440. https://doi.org/10.1016/j.ssmqr.2024.100440
Kutalek, R. (2012). Diversity competence in medicine: Equity, culture and practice. Wiener Klinische Wochenschrift, 3(1), 3–9. https://doi.org/10.1007/s00508-012-0247-5
Larson, K. L., Matthews, H. F., Moye, J. P., Congema, M. R., Hoffman, S. J., Murrieta, K. M., & Johnson, L. A. (2021). Four kinds of hard: An understanding of cancer and death among Latino community leaders. Global Qualitative Nursing Research, 8, 23333936211003557. https://doi.org/10.1177/23333936211003557
Larson. K. L., Mathews, H. F., Melendez, C. R., Hupp, T., Estrada, M., Moye, J. P., Passwater, C. C., & Muzaffar, M. (2023). Original research: Can a palliative care lay health advisor-nurse partnership improve health equity for Latinos with cancer? The American Journal of Nursing, 123(7), 18–27. https://doi.org/10.1097/01.NAJ 0000944912.42194.33
Lekas, H. M., Pahl, K., & Lewis, C. F. (2020). Rethinking cultural competence: Shifting to cultural humility. Health Service Insights, 13, 1178632920970580. https://doi.org/10.1177/117863 2920970580
MacKenzie, L., & Hatala, A. (2019). Addressing culture within healthcare settings: The limits of cultural competence and the power of humility. Canadian Medical Education Journal, 10(1), e124–e127. https://doi.org/https://doi.org/10.36834/cmej.52966
Maddalena, V. J., Bernard, W. T., Etowa, J., Murdoch, S. D., Smith, D., & Jarvis, P. M. (2010). Awareness of palliative care and end-of-life options among African Canadians in Canada. Journal of Transcultural Nursing, 21(2), 114–122. https://doi.org/10.1177/1043659609 357634
Marin, B, G., Oliva, R., & Anandarajah, G. (2023). Exploring the beliefs, values, and understanding of quality end-of-life care in the Latino community: A Spanish-language qualitative study. The American Journal of Hospice & Palliative Care, 41(5), 508–515. https://doi.org/10.1177/10499091231188693
Nolan, T. S., Alston, A., Choto, R., & Moss, K. O. (2021). Cultural humility. Clinical Journal of Oncology Nursing, 25(5), 3–9. http://doi.org/10.1188/21.CJON.S1.3-9
Patel, M. I., Khateeb, S., & Coker, T. (2020a). A randomized trial of a multi-level intervention to improve advance care planning and symptom management among low-income and minority employees diagnosed with cancer in outpatient community settings. Contemporary Clinical Trials, 91, 105971. https://doi.org/10.1016/j.cct.2020.105971
Patel, M. I., Lopez, A. M., Blackstock, W., Reeder-Hayes, K., Moushey, E. A., Phillips, J., & Tap, W. (2020b). Cancer disparities and health equity: A policy statement from the American Society of Clinical Oncology. Journal of Clinical Oncology, 38(29), 3439–3448. https://doi.org/10.1200/JCO.20.00642
Rhodes, R. L., Batchelor, K., Lee, S. C., & Halm, E. A. (2015). Barriers to end-of-life care for African Americans from the providers’ perspective: Opportunity for intervention development. The American Journal for Hospice and Palliative Care, 32(2), 137–143. https://doi.org/10.1177/1049909113507127
Rising, M. L., Hassouneh, D., Berry, P., & Lutz, K. (2021). Mistrust reported by US Mexicans with cancer at end of life and hospice enrollment. Advances in Nursing Science, 44(1), 14–31. https://doi.org/10.1097/ANS.0000000000000344
Santos Salas, A., LeGuerrier, B., Horvath, L., Bassah, N., Adewale, B., Bardales, O., Duggleby, W., Salami, B., & Watanabe, S. (2024) The impact of socioeconomic inequality on access to health care for patients with advanced cancer: A qualitative study. Asia-Pacific Journal of Oncology Nursing, 11(7), 100520. https://doi.org/10.1016/j.apjon.2024.100520
Santos Salas, A., Watanabe, S. M., Sinnarajah, A., Bassah, N., Huang, F., Turner, J., Castro, J. A., O’Rourke, H. M., Camargo-Plazas, P., Salami, B., Santana, M., Campbell, K., Abdel-Rahman, O., Wildeman, T., Vaughn, L., Judge, H., Ahmed, S., Adewale, B., Iyiola, I., & the Patient Advisory Council. (2023). Increasing access to palliative care for patients with advanced cancer of African and Latin American descent: A patient-oriented community-based study protocol. BMC Palliative Care, 22(1), 204. https://doi.org/10.1186/s12904-023-01323-0
Shalev, A., Phongyankuel, V., Kozlov, E., Shen, M. J., Adelman, R. D., & Reid, M. C. (2018). Awareness and misperceptions of hospice and palliative care: A population-based survey study. The American Journal of Hospice and Palliative Care, 35(3), 431–439. https://do i.org/10.1177/1049909117715215
Shamsi, H. A., Almutairi, A. G., Mashrafi, S. A., & Kalbani, T. A. (2020). Implications of language barriers for healthcare: A systematic review. Oman Medical Journal, 35(2), e122. https://doi.org/10.5001/omj.2020.40
Shen, M. J., & Wellman, J. D. (2019). Evidence of palliative care stigma: The role of negative stereotypes in preventing willingness to use palliative care. Palliative & Support Care, 17(4), 374–380. https://doi.org/10.1017/S1478951518000834
Sokol, R., & Fisher, E. (2016). Peer support for the hardly reached: A systematic review. American Journal of Public Health, 106(7), 1–8. https://doi.org/10.2105/AJP.2016. 303180
Squires, A. (2017). Evidence-based approaches to breaking down language barriers. Nursing, 47(9), 34–40. https://doi.org/10.1097/01.NURSE.0000522002.60278.ca
Stanford, F. T. (2020). The importance of diversity and inclusion in the healthcare workforce. Journal of the National Medical Association, 112(3), 247–249. https://doi.org/10.1016/j.jnma.2020.03.014
Stubbe, D. E. (2020). Practicing cultural competence and cultural humility in the care of diverse patients. American Psychiatric Publishing, 18(1), 49–51. https://doi.org/10.1176/appi.foc us.20190041
Sutradhar, R., Barbera, L., & Hsien-Yeang, S. (2017). Palliative homecare is associated with reduced high- and low-acuity emergency department visits at the end of life: A population-based cohort study of cancer descendants. Palliative Medicine, 31(5), 448–455. https://doi.org/10.1177/0269216316663508
Thomas, A. G., & Porter, A. B. (2023). Promoting inclusive cancer care: Beyond medical interpreters. Oncologist, 28(12), 1131–1133. https://doi.org/10.1093/oncolo/oyad290
Temel, J. S., Greer, J. A., Muzikansky, A., Gallagher, E. R., Admane, S., Jackson, V. A., Dahlin, C. M., Blinderman, C. D., Jacobsen, J., Pirl, W. F., Billings, J., & Lynch, T. J. (2010). Early palliative care for patients with metastatic non-small-cell lung cancer. New England Journal of Medicine, 363(8),733–742. https://doi.org/10.1056/NEJMoa1000678
Torres, S., Labtoné, R., Spitzer, D. L., Andrew, C., & Amaratunga, C. (2014). Improving health equity: The promising role of community health workers in Canada. Healthcare Policy, 10(1), 73–85.
Tricco, A. C., Lillie, E., Zarin, W., O’Brien, K. K., Colquhoun, H., Levac, D., Moher, D., Peters, M. D., Horlsey, T., Weeks, L., Hempel. S., Akl, E. A., Chang, C., McGowan, J., Stewart, L., Hartling, L., Aldcroft, A., Wilson, M. G., Garritty, C., … Straus, S. E. (2018). PRISMA Extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Annals of Internal Medicine, 169(7), 467–473. https://doi.org /10.7326/M18-0850
Veritas Health Innovation. (2025). Covidence systematic review software (Version 2) [Computer software].
Visser, A. K., Pithan A., Kupershmidt, S., Kenyon, D. B., & Puumala, S. E. (2025). Integration of community health workers into palliative care teams: A scoping review. Western Journal of Nursing Research, 47(2), 110–124. http://doi.org/10.177/01939459241304520
Wilson, K., Kortes-Miller, K., & Stinchcombe, A. (2018). Staying out of the closet: LGBT older adults’ hopes and fears in considering end-of-life. Canadian Journal on Aging, 37(1), 22–31. https://doi.org/10.1017/S0714980817000514
Yancu, C. N., Farmer, D. F., & Leahman, D. (2010). Barriers to hospice use and palliative care services use by African American adults. The American Journal of Hospice and Palliative Care, 27(4), 248–253. https://doi.org/10.1177/1049909109349942
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