The Suffering Experiences: Family Caregiver of Home Based Palliative Care in Malaysia

Wanda Kiyah George Albert; Adi Fahrudin; Steward Lindong; Husmiati Yusuf

doi:10.3889/oamjms.2022.8573

Authors

Wanda Kiyah George Albert Social Work Program, Faculty of Psychology and Education, Universiti Malaysia Sabah, Kota Kinabalu, Sabah, Malaysia
Adi Fahrudin Department of Psychology, Faculty of Psychology, Universitas Bhayangkara Jakarta Raya, Indonesia, Associate Research Fellow, The Psychology and Social Health Research Unit Universiti Malaysia Sabah, Malaysia and Visiting Professor, Institute of Social Work Research, Japan College of Social Work, Tokyo, Japan https://orcid.org/0000-0001-7140-6006
Steward Lindong Hospital Chancellor Tuanku Muhriz, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia https://orcid.org/0000-0001-9257-3735
Husmiati Yusuf National Research and Innovation Agency, Jakarta, Indonesia

DOI:

https://doi.org/10.3889/oamjms.2022.8573

Keywords:

Family caregivers, Patients with cancer, Challenges, Caregiving

Abstract

BACKGROUND: Caring for a family member who has advanced cancer and is nearing the end of their life comes with a slew of concerns and obstacles for the caregiver. A thorough understanding of the hardships and tribulations of caregiving may be a step toward resolving the issues that these patients’ family caregivers confront.

AIM: The present study aimed to explore the suffering experienced faced by Malaysian family member who has advanced cancer and is nearing the end of their life.

MATERIALS: The present qualitative study was conducted through in-depth semi-structured interviews held with seven family caregivers of cancer patients selected through purposive sampling. Interviews continued until the saturation of data. All interviews were recorded, transcribed, and analyzed through conventional content analysis.

RESULTS: The codes extracted from interviews produced five main themes, including empathic suffering, powerless and hopeless suffering, predictive suffering, compliance suffering, and barriers’ wrath, which collectively caused suffering for family caregivers.

CONCLUSION: Care provided in an atmosphere of suffering and discontent diminishes the caregiver’s quality of life and quality of patient care. Health planners should therefore consider the challenges and sufferings faced by family caregivers and should seek to obviate them through plans.

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References

Balboni TA, Vanderwerker LC, Block SD, Paulk ME, Lathan CS, Peteet JR, et al. Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. J Clin Oncol. 2007;25(5):555-60. https://doi.org/10.1200/jco.2006.07.9046 PMid:17290065

Fujinami R, Otis-Green S, Klein L, Sidhu R, Ferrell B. Quality of life of family caregivers and challenges faced in caring for patients with lung cancer. Clin J Oncol Nurs. 2012;16(6):E210-20. https://doi.org/10.1188/12.cjon.e210-e220 PMid:23178364

Morishita M, Kamibeppu K. Quality of life and satisfaction with care among family caregivers of patients with recurrent or metastasized digestive cancer requiring palliative care. Support Care Cancer. 2014;22(10):2687-96. https://doi.org/10.1007/s00520-014-2259-3 PMid:24789422

Nguyen DL, Chao D, Ma G, Morgan T. Quality of life and factors predictive of burden among primary caregivers of chronic liver disease patients. Ann Gastroenterol. 2015;28(1):124-9. PMid:25608915

Agar M, Currow DC, Shelby-James TM, Plummer J, Sanderson C, Abernethy AP. Preference for place of care and place of death in palliative care: Are these different questions? Palliat Med. 2008;22(7):787-95. https://doi.org/10.1177/0269216308092287 PMid:18755830

Kiyah W, Fahrudin A. Quality of life (QOL) assessment among advance cancer patient undergoing palliative treatment in Malaysia. Asian Soc Work J. 2017;2(2):26-35. https://doi.org/10.47405/aswj.v2i2.18

Albert WK, Hatta ZA, Fahrudin A. The experience of family caregivers living with advanced cancer patients. Asian Soc Work J. 2017;2(1):53-63. https://doi.org/10.47405/aswj.v2i1.14

Kim Y, Baker F, Spillers RL. Cancer caregivers’ quality of life: Effects of gender, relationship, and appraisal. J Pain Symptom Manage. 2007;34(3):294-304. https://doi.org/10.1016/j.jpainsymman.2006.11.012 PMid:17572056

Dees M, Vernooij‐Dassen M, Dekkers W, Van Weel C. Unbearable suffering of patients with a request for euthanasia or physician‐assisted suicide: An integrative review. Psychooncology. 2010;19(4):339-52. https://doi.org/10.1002/pon.1612 PMid:19771571

Wilson KG, Chochinov HM, McPherson CJ, LeMay K, Allard P, Chary S, et al. Suffering with advanced cancer. J Clin Oncol. 2007;25(13):1691-7. https://doi.org/10.1200/jco.2006.08.6801 PMid:17470861

Hudson P, Payne S. Family caregivers and palliative care: Current status and agenda for the future. J Palliat Med. 2011;14(7):864-9. https://doi.org/10.1089/jpm.2010.0413 PMid:21599532

Al-Shahri MZ, Eldali AM, Al-Zahrani O. Prevalence and severity of suffering among patients with advanced cancer. Support Care Cancer. 2012;20(12):3137-40. https://doi.org/10.1007/s00520-012-1443-6 PMid:22453792

Tang ST, Liu TW, Lai MS, Liu LN, Chen CH, Koong SL. Congruence of knowledge, experiences, and preferences for disclosure of diagnosis and prognosis between terminally-ill cancer patients and their family caregivers in Taiwan. Cancer Invest. 2006;24(4):360-6. https://doi.org/10.1080/07357900600705284 PMid:16777687

Ruijs CD, Kerkhof AJ, van der Wal G, Onwuteaka-Philipsen BD. The broad spectrum of unbearable suffering in end-of-life cancer studied in dutch primary care. BMC Palliat Care. 2012;11(1):12. https://doi.org/10.1186/1472-684x-11-12 PMid:22853448

Wittenberg-Lyles E, Demiris G, Oliver DP, Burt S. Reciprocal suffering: Caregiver concerns during hospice care. J Pain Symptom Manage. 2011;41(2):383-93. https://doi.org/10.1016/j.jpainsymman.2010.04.026 PMid:21146356

Tang ST, Liu TW, Lai MS, McCorkle R. Discrepancy in the preferences of place of death between terminally ill cancer patients and their primary family caregivers in Taiwan. Soc Sci Med. 2005;61(7):1560-6. https://doi.org/10.1016/j.socscimed.2005.02.006 PMid:16005787

Given BA, Given CW, Sherwood PR. Family and caregiver needs over the course of the cancer trajectory. J Support Oncol. 2012;10(2):57-64. https://doi.org/10.1016/j.suponc.2011.10.003 PMid:22222251

Beng TS, Guan NC, Seang LK, Pathmawathi S, Ming MF, Jane LE, et al. The experiences of suffering of palliative care patients in Malaysia: A thematic analysis. Am J Hosp Palliat Med. 2014;31(1):45-56. https://doi.org/10.1177/1049909112458721 PMid:22956340

Creswell JW, Poth CN. Qualitative Inquiry and Research Design: Choosing among Five Approaches. Thousand Oaks, California: Sage Publications; 2016.

Yin RK. Case Study Research: Design and Methods. 5th ed. Thousand Oaks, California: SAGE Publications Inc.; 2014.

Yin RK. Qualitative Research from Start to Finish. New York: Guilford Press Publications; 2015.

Patton MQ. Qualitative Research and Evaluation Methods. London: Sage; 2002.

Miles MB, Huberman AM, Saldaña J. Qualitative Data Analysis: A Methods Sourcebook. 3rd ed. Beverly Hills, California: Sage; 2014.

Reynolds WJ, Scott B. Empathy: A crucial component of the helping relationship. J Psychiatr Ment Health Nurs 1999;6:363-70. https://doi.org/10.1046/j.1365-2850.1999.00228.x

Stajduhar KI, Allan DE, Cohen SR, Heyland DK. Preferences for location of death of seriously ill hospitalized patients: Perspectives from Canadian patients and their family caregivers. Palliat Med 2008;22:85-8. https://doi.org/10.1177/0269216307084612

Breen CM, Abernethy AP, Abbott KH, Tulsky JA. Conflict associated with decisions to limit life-sustaining treatment in intensive care units. J Gen Intern Med 2001;16:283-9. https://doi.org/10.1046/j.1525-1497.2001.00419.x

Norinder M, Goliath I, Alvariza A. Patients’ experiences of care and support at home after a family member’s participation in an intervention during palliative care. Palliat Support Care. 2017;15(3):305-12. https://doi.org/10.1017/s1478951516000729 PMid:27748224

Kübler-Ross E. On Death and Dying. New York: The Macmillan Company; 1969.

Kübler-Ross E. Living with Death and Dying. New York: Simon and Schuster; 2011.

Milberg A, Strang P, Jakobsson M. Next of kin’s experience of powerlessness and helplessness in palliative home care. Support Care Cancer. 2004;12(2):120-8. https://doi.org/10.1007/s00520-003-0569-y PMid:14685835