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Jurnal Keperawatan Indonesia
Articles
VIEWS: 223
10.7454/jki.v26i2.1095
Submitted: 2023-05-30
Published: 2023-07-27

Family Caregivers’ Preparedness with Death And Dying: An Ethnographic Study

School of Nursing, Universitas Muhammadiyah Yogyakarta, Yogyakarta 55183
Adelaide Nursing School, University of Adelaide, Adelaide 5005
death and dying end-of-life ethnography family caregiver ritual practice religion/spirituality

Abstract

Death and dying is a complex process and influenced by belief and culture. Understanding the cultural practice is therefore important to enable providing quality end-of-life care. This paper focus in reporting how family caregivers prepare and deal with death and dying within palliative care context. This study was a contemporary ethnographic study that deriving data from observations and informal interviews. Field observation and informal interviews were conducted over three months with 21 patients’ relatives. Data was analyzed using ethnographic data analysis framework. Dealing with death and dying relates to how this was experienced and managed by the patient’s relatives. Three subthemes emerged: secret, ritual practices at end- of-life, and respect. Ritual practices at end-of-life demonstrate how religious and cultural influence during the event. The findings of the current research have identified the practice during death and dying of family caregivers that include fulfilment of patient’s wishes. An understanding of integral cultural element to death and dying is important to enable providing quality palliative care and end-of life care.

 

Abstrak

Kesiapan Keluarga dalam Kematian dan Akhir Hayat: Penelitian Etnografi. Kematian dan akhir kehidupan adalah proses yang kompleks, dan dipengaruhi oleh kepercayaan dan budaya. Oleh karena itu, memahami praktik budaya penting untuk dapat memberikan perawatan akhir kehidupan yang berkualitas. Penelitian ini berfokus dalam melaporkan bagaimana keluarga mempersiapkan dan menangani kematian dan kematian dalam konteks perawatan paliatif. Penelitian ini merupakan penelitian etnografi kontemporer yang mengambil data dari observasi dan wawancara informal. Observasi lapangan dan wawancara informal dilakukan selama tiga bulan dengan 21 kerabat pasien. Analisis data menggunakan kerangka analisis data etnografi. Berurusan dengan kematian dan sekarat berkaitan dengan bagaimana hal ini dialami dan dikelola oleh kerabat pasien. Tiga subtema muncul; rahasia, praktik ritual di akhir kehidupan dan rasa hormat. Praktik ritual di akhir hayat menunjukkan bagaimana pengaruh agama dan budaya selama acara berlangsung. Temuan penelitian saat ini telah mengidentifikasi bagaimana praktik selama kematian dan sekarat pengasuh keluarga. Pemahaman tentang elemen budaya integral kematian dan sekarat penting untuk memungkinkan memberikan perawatan paliatif berkualitas dan perawatan akhir hidup.

Kata kunci: agama/spiritualitas, akhir kehidupan, etnografi, keluarga yang merawat, kematian dan akhir hayat, praktik ritual

References

  1. Abdel-hafeez, A., Abdel-Aziz, H.I., Hassan, A., Farag, D.E., El-Sherief, W.A., Abdel-Aal, H.H., & Alsirafy, S.A. (2021). Diagnosis disclosure preferences of cancer patients in egypt: A multi-institutional cross-sectional study. American Journal of Hospice and Palliative Medicine, 39(7), 779-784. doi: 10.1177/10499091211041082.
  2. Al-Shahri, M. (2002). The future of palliative care in the islamic world. Western Journal of Medicine, 176(1), 60-61. doi: 10.1136/ewjm.176.1.60.
  3. Aoun, S.M., Rumbold, B., Howting, D., Bolleter, A., & Breen, L.J. (2017). Bereavement support for family caregivers: The gap between guidelines and practice in palliative care. PLoS One, 12(10), e0184750. doi: 10.1371/journal.pone.0184750.
  4. Barusch, A., Gringeri, C., & George, M. (2011). Rigor in qualitative social work research: A review of strategies used in published articles. Social Work Research, 35(1), 11-19. doi: doi.org/10.1093/swr/35.1.11.
  5. Bergin, M. (2011). Nvivo 8 and consistency in data analysis: Reflecting on the use of a qualitative data analysis program. Nurse Researcher, 18(3), 6-12. doi: 10.7748/nr2011.04.18.3.6.c8457.
  6. Bonisteel, I., Shulman, R., Newhook, L.A., Guttmann, A., Smith, S., & Chafe, R. (2021). Reconceptualizing recruitment in qualitative research. International Journal of Qualitative Methods, 20. doi: 10.1177/16094069211042493.
  7. Cheng, S.Y., Suh, S.Y., Morita, T., Oyama, Y., Chiu, T.Y., Koh, S.J., Kim, H.S., Hwang, S.J., Yoshie, T., & Tsuneto, S. (2015). A cross-cultural study on behaviors when death is approaching in east asian countries: What are the physician-perceived common beliefs and practices?. Medicine, 94(39), e1573. doi: 10.1097/md.0000000000001573.
  8. Collins, A., McLachlan, S.A., & Philip, J. (2018). How should we talk about palliative care, death and dying? A qualitative study exploring perspectives from caregivers of people with advanced cancer.
  9. Palliative Medicine, 32(4), 861-869. doi: 10.1177/0269216317746584.
  10. Davis, E.L., Oh, B., Butow, P.N., Mullan, B.A., & Clarke, S. (2012). Cancer patient disclosure and patient-doctor communication of complementary and alternative medicine use: A systematic review. The Oncologist, 17(11), 1475-1481. doi: 10.1634/theoncologist.2012-0223.
  11. Draper, J. (2015). Ethnography: Principles, practice and potential. Nursing Standard, 29(36), 36-41. doi: 10.7748/ns.29.36.36.e8937.
  12. Durepos, P., Sussman, T., Ploeg, J., Akhtar-Danesh, N., Punia, H., & Kaasalainen, S. (2019). What does death preparedness mean for family caregivers of persons with dementia?. The American Journal of Hospice and Pallliative Care, 36(5), 436-446. doi: 10.1177/1049909118814240.
  13. Eng, V., Hewitt, V., & Kekalih, A. (2022). Preference for initiation of end-of-life care discussion in Indonesia: A quantitative study. BMC Palliat Care, 21(1), 6. doi: 10.1186/s12904-021-00894-0.
  14. Fenton, A.T., Anderson, E.C., Scharnetzki, E., Reed, K., Edelman, E., Antov, A., Rueter, J., Han, P.K.J., & MCGI Working Group. (2021). Differences in cancer patients' and clinicians' preferences for disclosure of uncertain genomic tumor testing results. Patient Education and Counseling, 104(1), 3-11. doi: 10.1016/j.pec.2020.07.010.
  15. Fetterman, D.M. (2010). Ethography step-by-step (3rd ed.). Sage.
  16. Gatrad, R., & Sheikh, A. (2002). Palliative care for muslims and issues after death. International Journal of Palliative Nursing, 8(12), 594-597. doi: 10.12968/ijpn.2002.8.12.10977.
  17. Gould, H., Kohn, T., & Gibbs, M. (2018). Uploading the ancestors: Experiments with digital buddhist altars in contemporary japan. Death Studies, 43(7), 456-465. doi: 10.1080/07481187.2018.1544948.
  18. Harrison, M.E., & Walling, A. (2010). What do we know about giving bad news? A review. Clinical Pediatrics, 49(7), 619-626. doi: 10.1177/0009922810361380.
  19. Houghton, C., Hunter, A., & Meskell, P. (2012). Linking aims, paradigm and method in nursing research. Nurse Researcher, 20(2), 34-39. doi: 10.7748/nr2012.11.20.2.34.c9439.
  20. Huang, C.C., Chen, J.Y., & Chiang, H.H. (2016). The transformation process in nurses caring for dying patients. The Journal of Nursing Research, 24(2), 109-117. doi: 10.1097/jnr.0000000000000160.
  21. Huang, H.L., Weng, L.C., Hu, W.Y., Shyu, Y.L., Yu, W.P., & Chen, K.H. (2018). End-of-life care discussion for residents with dementia in long-term care facilities. The Journal of Nursing Research, 26(4), 231-241. doi: 10.1097/jnr.0000000000000240.
  22. Huang, M.-H., Wang, R.-H., & Wang, H.-H. (2020). Effect of life review on quality of life in terminal patients: A systematic review and meta-analysis. The Journal of Nursing Research, 28(2), e83. doi: 10.1097/JNR.0000000000000335.
  23. Jones, J., & Smith, J. (2017). Ethnography: Challenges and opportunities. Evidence-based Nursing, 20(4), 98-100. doi: 10.1136/eb-2017-102786.
  24. Kirby, E., Lwin, Z., Kenny, K., Broom, A., Briman, 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. doi: 10.1186/s12904-018-0343-z.
  25. Kleijn, G., Lissenberg-Witte, B.I., Bohlmeijer, E.T., Steunenberg, B., Knipscheer-Kuijpers, K., Willemsen, V., Becker, A., Smit, E.F., Eeltink, C.M., Bruynzeel, A.M.E., van der Vorst, M., de Bree, R., Leemans, C.R., van den Brekel, M.W.M., Cuijpers, P., & Verdonck-de Leeuw, I.M. (2018). The efficacy of life review therapy combined with memory specificity training (LRT-MST) targeting cancer patients in palliative care: A randomized controlled trial. PLoS One, 13(5), e0197277. doi: 10.1371/journal.pone.0197277.
  26. Korstjens, I., & Moser, A. (2018). Series: Practical guidance to qualitative research. Part 4: Trustworthiness and publishing. European Journal of General Practice, 24(1), 120-124. doi: 10.1080/13814788.2017.1375092.
  27. LeCompte, M.D., & Schensul, J.J. (2013). Analysis & interpretation of etnographic data: A mixed method approach (2nd ed.). AltaMira Press.
  28. Levy, K., Grant, P.C., Clem, K., Eadie, D.S., & Rossi, J.L. (2021). Holding onto hurt: The prevalence of interpersonal hurt and need for forgiveness-focused solutions for hospice family caregivers. Journal of Palliative Medicine, 24(8), 1139-1146. doi: 10.1089/jpm.2020.0521.
  29. Long, N.H., Thanasilp, S., & Doutrich, D.L. (2018). Death acceptance in vietnamese cancer patients: A phenomenological study. Journal of Transcultural Nursing, 29(6), 563-569. doi: 10.1177/1043659618765081.
  30. Mah, K., Powell, R.A., Malfitano, C., Gikaara, N., Chalklin, L., Hales, S., Rydall, A., Zimmermann, C., Mwangi-Powell, F.N., & Rodin, G. (2019). Evaluation of the quality of dying and death questionnaire in kenya. Journal of Global Oncology, 5, 1-16. doi: 10.1200/jgo.18.00257.
  31. Maungtoug, N., Othaganont, P., & Liehr, P. (2021). Adding ritualized chanting to the palliative care of cancer patients at the end of life: A randomized controlled trial. Journal of Social Work in End-of-life and Palliative Care, 17(1), 35-49. doi: 10.1080/15524256.2021.1871703.
  32. Moir, C., Roberts, R., Martz, K., Perry, J., & Tivis, L.J. (2015). Communicating with patients and their families about palliative and end-of-life care: Comfort and educational needs of nurses. International Journal of Palliative Nursing, 21(3), 109-112. doi: 10.12968/ijpn.2015.21.3.109.
  33. Newman, A.R. (2016). Nurses' perceptions of diagnosis and prognosis-related communication: An integrative review. Cancer Nursing, 39(5), E48–E60. doi:10.1097/NCC.0000000000000365.
  34. O'Sullivan, A., Alvariza, A., Öhlén, J., & Larsdotter, C. (2021). Support received by family members before, at and after an ill person's death. BMC Palliat Care, 20(1), 92. doi: 10.1186/s12904-021-00800-8.
  35. Okan, İ., Suren, M., Onder, Y., Citil, R., Akay, S., & Demir, T. (2019). An evaluation of the mourning tradition, the "first feast," in the context of palliative care: The possibility of incorporating cultural rituals into palliative care. Palliative Supportive Care, 17(4), 453-458. doi: 10.1017/s1478951518000767.
  36. Pentaris, P., & Thomsen, L.L. (2018). Cultural and religious diversity in hospice and palliative care: A qualitative cross-country comparative analysis of the challenges of health-care professionals. Omega, 81(4), 648-669. doi: 10.1177/0030222818795282.
  37. 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. doi: 10.1016/j.jpainsymman.2020.04.027.
  38. Renz, M., Bueche, D., Reichmuth, O., Schuett Mao, M., Renz, U., Siebenrock, R., & Strasser, F. (2020). Forgiveness and reconciliation processes in dying patients with cancer. The American Journal Of Hospice and Palliative Care, 37(3), 222-234. doi: 10.1177/1049909119867675.
  39. Rochmawati, E., Wiechula, R., & Cameron, K. (2016). Current status of palliative care services in Indonesia: A literature review. International Nursing Review, 63(2), 180-190. doi: 10.1111/inr.12236.
  40. Rome, R.B., Luminais, H.H., Bourgeois, D.A., & Blais, C.M. (2011). The role of palliative care at the end of life. Ochsner Journal, 11(4), 348-352.
  41. Silva, R.S., Caldeira, S., Coelho, A.N., & Apóstolo, J.L.A. (2020). Forgiveness facilitation in palliative care: A scoping review. JBI Evidence Synthesis, 18(11), 2196-2230. doi: 10.11124/jbisrir-d-19-00286.
  42. Sudhakar, R., Veeraiah, S., Ganesan, P., & Balakrishnan, K. (2020). Quality of death: The unspoken experiences of patients with advanced cancers in india - An exploratory qualitative study. Psycho-Oncology, 30(1), 111-117. doi: 10.1002/pon.5570.
  43. Sutar, R., Chaudhary, P., & Yadav, V. (2021). Prevalence of collusion in cancer communications: A meta-analysis [Review]. Psycho-Oncology, 31(3), 372-387. doi: 10.1002/pon.5824.
  44. Tang, S.T., Liu, T.W., Liu, L.N., Chiu, C.F., Hsieh, R.K., & Tsai, C.M. (2014). Physician-patient end-of-life care discussions: Correlates and associations with end-of-life care preferences of cancer patients-A cross-sectional survey study. Palliative Medicine, 28(10), 1222-1230. doi: 10.1177/0269216314540974.
  45. van Laarhoven, H., Schilderman, J., Verhagen, C., & Prins, J. (2012). Comparison of attitudes of guilt and forgiveness in cancer patients without evidence of disease and advanced cancer patients in a palliative care setting. Cancer Nursing, 35(6), 483-492. doi: 10.1097/NCC.0b013e318243fb30.
  46. Walczak, A., Henselmans, I., Tattersall, M.H.N., Clayton, J.M., Davidson, P.M., Young, J., Bellemore, F.A., Epstein, R.M., & Butow, P.N. (2015). A qualitative analysis of responses to a question prompt list and prognosis and end-of-life care discussion prompts delivered in a communication support program. Psycho-Oncology, 24(3), 287-293. doi: 10.1002/pon.3635.
  47. Wen, K.Y., Lin, Y.C., Cheng, J.F., Chou, P.C., Wei, C.H., Chen, Y.F., & Sun, J.L. (2013). Insights into chinese perspectives on do-not-resuscitate (DNR) orders from an examination of dnr order form completeness for cancer patients. Supportive care in cancer : Official Journal of the Multinational Association of Supportive Care in Cancer, 21(9), 2593-2598. doi: 10.1007/s00520-013-1827-2.

How to Cite

Rochmawati, E., & Wiechula, R. (2023). Family Caregivers’ Preparedness with Death And Dying: An Ethnographic Study. Jurnal Keperawatan Indonesia, 26(2), 107–118. https://doi.org/10.7454/jki.v26i2.1095