'I tried to get into their shoes and their culture'. Care worker experiences in cultural end-of-life care: Interpretative phenomenological analysis.

caregivers culturally competent care culture death hospice and palliative care nursing nursing assistants palliative care qualitative research terminal care

Journal

Journal of clinical nursing
ISSN: 1365-2702
Titre abrégé: J Clin Nurs
Pays: England
ID NLM: 9207302

Informations de publication

Date de publication:
17 Jun 2024
Historique:
revised: 12 04 2024
received: 03 11 2023
accepted: 22 05 2024
medline: 18 6 2024
pubmed: 18 6 2024
entrez: 18 6 2024
Statut: aheadofprint

Résumé

What are care workers' lived experiences caring for people of culturally and linguistically diverse backgrounds during end-of-life care? Interpretative phenomenological analysis METHODS: The lived experiences of 11 care workers within the Australian Capital Territory and region who have cared for someone of a culturally and linguistically diverse background during end-of-life care were captured. Each care worker was interviewed individually and answered a series of semi-structured open-ended questions. Using interpretative phenomenological analysis, three group experiential themes were derived: (i) navigating cultural shock and death, (ii) the hard work of communication and (iii) searching for deeper connections with client and self. Within these were key elements: Care workers worked hard to embrace cultural diversity, but struggled to meet cultural needs, particularly in relation to the unpredictable timeline of dying. Care workers relied on themselves and their improvisation, but experienced self-blame for inadequate care and unexpected challenges in communication. Blurred boundaries in relation to therapeutic relationships were apparent, and care workers felt alone with emotional burden, but also found belonging and joy in their work. Care workers' experiences are vital to understanding the barriers and challenges in providing culturally appropriate end-of-life care. Care workers repeatedly experienced an emotional burden and vicarious trauma throughout their work in this field. Care workers were self-reliant in all aspects of care including communication and consistently desired education, training, resources and support. There remains inadequate research on care workers and their role within the Australian healthcare context. Care workers need access to support and resources including professional translators to provide culturally appropriate end-of-life care. Workplaces and registered nurses should facilitate training and provide guidance to care workers. A person-centred approach is required during all client encounters while maintaining appropriate therapeutic relationships including therapeutic use of self and professional boundaries. COREQ Checklist. During this study, care workers were interviewed on their experiences caring for people of culturally and linguistically diverse backgrounds during end-of-life care. Patients were not directly involved within this study, but their views may have been expressed through the care workers' experience.

Identifiants

pubmed: 38886985
doi: 10.1111/jocn.17314
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Informations de copyright

© 2024 The Author(s). Journal of Clinical Nursing published by John Wiley & Sons Ltd.

Références

ACN. (2019). Regulation of the unregulated health care workforce across the health care system – A white paper by ACN 2019. Australian College of Nursing. https://www.acn.edu.au/wp‐content/uploads/white‐paper‐regulation‐unregulated‐health‐care‐workforce‐across‐health‐care‐system.pdf
Alase, A. (2017). The interpretative phenomenological analysis (IPA): A guide to a Good qualitative research approach. International Journal of Education and Literacy Studies, 5(2), 9–19. https://doi.org/10.7575/aiac.ijels.v.5n.2p.9
Bloomer, M. J., Botti, M., Runacres, F., Poon, P., Barnfield, J., & Hutchinson, A. M. (2019). Cultural considerations at end of life in a geriatric inpatient rehabilitation setting. Collegian, 26(1), 165–170. https://doi.org/10.1016/j.colegn.2018.07.004
Canning, D., Rosenberg, J. P., & Yates, P. (2007). Theraputic relationships in specialist palliative care nursing practice. International Journal of Palliative Nursing, 13(5), 222–229. https://doi.org/10.12968/ijpn.2007.13.5.23492
CEDA. (2021). Duty of care: Meeting the aged care workforce challenge. Committee for Economic Department of Australia. https://www.ceda.com.au/Admin/getmedia/29cf7e90‐afe9‐4c92‐bf4b‐7abc385078f8/Aged‐Care‐Workforce‐2021‐FINAL.pdf
Charlick, S., Pincombe, J., McKellar, L., & Fielder, A. (2016). Making sense of participant experiences: Interpretative phenomenological analysis in midwifery research. International Journal of Doctoral Studies, 11, 205–216. https://doi.org/10.28945/3486
Cheluvappa, R., & Selvendran, S. (2022). Palliative care nursing in Australia and the role of the registered nurse in palliative care. Nursing Reports, 12(3), 589–596. https://doi.org/10.3390/nursrep12030058
Chen, L., Xiao, L. D., Han, W., Meyer, C., & Müller, A. (2020). Challenges and opportunities for the multicultural aged care workforce: A systematic review and meta‐synthesis. Journal of Nursing Management, 28(6), 1155–1165. https://doi.org/10.1111/jonm.13067
Crevacore, C., Jacob, E., Coventry, L. L., & Duffield, C. (2023). Integrative review: Factors impacting effective delegation practices by registered nurses to assistants in nursing. Journal of Advanced Nursing, 79(3), 885–895. https://doi.org/10.1111/jan.15430
Crisp, J., Douglas, C., Rebeiro, G., & Waters, D. (2021). Potter & Perry's fundamentals of nursing (6th ed.). Elsevier Australia.
De Witt, L., & Ploeg, J. (2006). Critical appraisal of rigour in interpretive phenomenological nursing research. Journal of Advanced Nursing, 55(2), 215–229. https://doi.org/10.1111/j.1365‐2648.2006.03898.x
Furman, M., Harild, L., Anderson, M., Irish, J., Nguyen, K., & Wright, F. C. (2018). The development of practice guidelines for a palliative care multidisciplinary case conference. Journal of Pain and Symptom Management, 55(2), 395–401. https://doi.org/10.1016/j.jpainsymman.2017.08.016
Gelinas, L., Largent, E. A., Cohen, I. G., Kornetsky, S., Bierer, B. E., & Fernandez Lynch, H. (2018). A framework for ethical payment to research participants. The New England Journal of Medicine, 378(8), 766–771. https://doi.org/10.1056/NEJMsb1710591
Graham, F., Eaton, E., Jeffrey, C., Secher‐Jorgensen, H., & Henderson, A. (2021). “Specialling” and “Sitters”: What does communication between registered nurses and unregulated workers reveal about care? Collegian, 28(5), 482–488. https://doi.org/10.1016/j.colegn.2020.12.004
Herber, O. R., & Johnston, B. M. (2013). The role of healthcare support workers in providing palliative and end‐of‐life care in the community: A systematic literature review: Role of healthcare support workers. Health & Social Care in the Community, 21(3), 225–235. https://doi.org/10.1111/j.1365‐2524.2012.01092.x
Heydari, H., Hojjat‐Assari, S., Almasian, M., & Pirjani, P. (2019). Exploring health care providers' perceptions about home‐based palliative care in terminally ill cancer patients. BMC Palliative Care, 18(1), 66. https://doi.org/10.1186/s12904‐019‐0452‐3
Kenny, A., Dickson‐Swift, V., Phillips, C., DeVecchi, N., Masood, Y., & Hodge, B. (2019). Evaluation of registered undergraduate student of nursing (RUSON) pilot program. https://www.latrobe.edu.au/__data/assets/pdf_file/0007/1176811/RUSON‐Report_Amanda‐Kenny_V5.pdf
Kingdon, C. (2005). Reflexivity: Not just a qualitative methodological research tool. British Journal of Midwifery, 13(10), 622–627. https://doi.org/10.12968/bjom.2005.13.10.19835
Kirby, E., Broom, A., Good, P., Bowden, V., & Lwin, Z. (2017). Experiences of interpreters in supporting the transition from oncology to palliative care: A qualitative study. Asia‐Pacific Journal of Clinical Oncology, 13(5), e497–e505. https://doi.org/10.1111/ajco.12563
Kirby, E., Lwin, Z., Kenny, K., Broom, A., Birman, H., & Good, P. (2018). “It doesn't exist…”: Negotiating palliative care from a culturally and linguistically diverse patient and caregiver perspective. BMC Palliative Care, 17(1), 90. https://doi.org/10.1186/s12904‐018‐0343‐z
Krau, S. D. (2016). The difference between palliative care and end of life care: More than semantics. Nursing Clinics of North America, 51(3), 9–10. https://doi.org/10.1016/j.cnur.2016.07.002
Kunkle, R., Chaperon, C., Popejoy, L. L., Struwe, L., Wengel, S., & Berger, A. M. (2023). Understanding formal caregiver burden in nursing assistants in nursing homes: A mixed methods approach. Research in Gerontological Nursing, 16(5), 231–240. https://doi.org/10.3928/19404921‐20230706‐02
Lambert, E., Strickland, K., & Gibson, J. (2023). Cultural considerations at end‐of‐life for people of culturally and linguistically diverse backgrounds: A critical interpretative synthesis. Journal of Clinical Nursing, 1–20. https://doi.org/10.1111/jocn.16710
Miller, R. M., Chan, C. D., & Farmer, L. B. (2018). Interpretative phenomenological analysis: A contemporary qualitative approach. Counselor Education and Supervision, 57(4), 240–254. https://doi.org/10.1002/ceas.12114
Nilsson, S., Gibson, J., Paterson, C., & Crookes, P. (2022). Evidence informed generalist palliative care content for undergraduate nursing curriculum: An integrative review. Nurse Education in Practice, 64, 1–18. https://doi.org/10.1016/j.nepr.2022.103447
Norling, T., & Donovan, H. (2022). Palliative care education for care workers in aged care: A scoping review. Collegian, 29(6), 904–910. https://doi.org/10.1016/j.colegn.2022.04.009
Ohr, S., Jeong, S., & Saul, P. (2017). Cultural and religious beliefs and values, and their impact on preferences for end‐of‐life care among four ethnic groups of community‐dwelling older persons. Journal of Clinical Nursing, 26(11–12), 1681–1689. https://doi.org/10.1111/jocn.13572
Palliative Care Australia. (2022). Annual Report 2021–2022. https://palliativecare.org.au/publication/annual‐report‐2021‐2022/
Pham, T. T. L., Berecki‐Gisolf, J., Clapperton, A., O'Brien, K. S., Liu, S., & Gibson, K. (2021). Definitions of Culturally and Linguistically Diverse (CALD): A Literature Review of Epidemiological Research in Australia. International Journal of Environmental Research and Public Health, 18(2), 737. https://doi.org/10.3390/ijerph18020737
Radbruch, L., De Lima, L., Knaul, F., Wenk, R., Ali, Z., Bhatnaghar, S., Blanchard, C., Bruera, E., Buitrago, R., Burla, C., Callaway, M., Munyoro, E. C., Centeno, C., Cleary, J., Connor, S., Davaasuren, O., Downing, J., Foley, K., Goh, C., … Pastrana, T. (2020). Redefining palliative care—A new consensus‐based definition. Journal of Pain and Symptom Management, 60(4), 754–764. https://doi.org/10.1016/j.jpainsymman.2020.04.027
Roberts, T. (2013). Understanding the research methodology of interpretative phenomenological analysis. British Journal of Midwifery, 21(3), 215–218. https://doi.org/10.12968/bjom.2013.21.3.215
Selman, L., Speck, P., Barfield, R. C., Gysels, M., Higginson, I. J., & Harding, R. (2014). Holistic models for end of life care: Establishing the place of culture. Progress in Palliative Care, 22(2), 80–87. https://doi.org/10.1179/1743291X13Y.0000000063
Sinclair, C., Smith, J., Toussaint, Y., & Auret, K. (2014). Discussing dying in the diaspora: Attitudes towards advance care planning among first generation Dutch and Italian migrants in rural Australia. Social Science & Medicine, 101, 86–93. https://doi.org/10.1016/j.socscimed.2013.11.032
Smith, J. A. (2011). Evaluating the contribution of interpretative phenomenological analysis. Health Psychology Review, 5(1), 9–27. https://doi.org/10.1080/17437199.2010.510659
Smith, J. A., Flowers, P., & Larkin, M. (2022). Interpretative phenomenological analysis: Theory, method and research (2nd ed.). SAGE.
Smith, J. A., & Nizza, I. E. (2022). Essentials of interpretative phenomenological analysis. American Psychological Association. https://doi.org/10.1037/0000259‐000
Speck, P. (2016). Culture and spirituality: Essential components of palliative care. Postgraduate Medical Journal, 92(1088), 341–345. https://doi.org/10.1136/postgradmedj‐2015‐133369
Tark, A., Estrada, L. V., Stone, P. W., Baernholdt, M., & Buck, H. G. (2023). Systematic review of conceptual and theoretical frameworks used in palliative care and end‐of‐life care research studies. Palliative Medicine, 37(1), 10–25. https://doi.org/10.1177/02692163221122268
Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32‐item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042
Wardle, S., & Bennett, C. (2020). Spiritual inclusiveness at end‐of‐life for Punjabi Indians: Experience with regional residential aged care facilities. Journal of Religion, Spirituality & Aging, 33(2), 155–171. https://doi.org/10.1080/15528030.2020.1843589
WHO. (2016). Global strategy on human resources for health: Workforce 2030. World Health Organisation. https://iris.who.int/bitstream/handle/10665/250368/9789241511131‐eng.pdf?sequence=1
Yung‐Chih, C., Collins, A., Chopra, P., Ti, L. U., Eng‐Seong, T. A. N., & Couper, J. W. (2015). Understanding the experiences of Mandarin‐speaking patients diagnosed with life‐threatening cancer in Australia. Palliative & Supportive Care, 13(5), 1317–1323. https://doi.org/10.1017/S1478951514001175

Auteurs

Elizabeth Lambert (E)

School of Nursing, Midwifery and Public Health, University of Canberra, Bruce, Canberra, Australian Capital Territory, Australia.
Canberra Hospital, Canberra Health Services, Canberra, Australian Capital Territory, Australia.

Jo Gibson (J)

School of Nursing, Midwifery and Public Health, University of Canberra, Bruce, Canberra, Australian Capital Territory, Australia.

Kasia Bail (K)

School of Nursing, Midwifery and Public Health, University of Canberra, Bruce, Canberra, Australian Capital Territory, Australia.
Canberra Hospital, Canberra Health Services, Canberra, Australian Capital Territory, Australia.
SYNERGY Nursing & Midwifery Research Centre, Canberra, Australian Capital Territory, Australia.

Classifications MeSH