Open Access Maced J Med Sci. 2022 Jun 15; 10(E):1623-1629. 1623
Scientifc Foundation SPIROSKI, Skopje, Republic of Macedonia
Open Access Macedonian Journal of Medical Sciences. 2022 Jun 15; 10(E):1623-1629.
https://doi.org/10.3889/oamjms.2022.8573
eISSN: 1857-9655
Category: E - Public Health
Section: Public Health Education and Training
The Sufering Experiences: Family Caregiver of Home Based
Palliative Care in Malaysia
Wanda Kiyah George Albert
1
* , Adi Fahrudin
2
, Steward Lindong
3
, Husmiati Yusuf
4
1
Social Work Program, Faculty of Psychology and Education, Universiti Malaysia Sabah, Kota Kinabalu, Sabah, Malaysia;
2
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;
3
Hospital Chancellor Tuanku Muhriz, Universiti
Kebangsaan Malaysia, Kuala Lumpur, Malaysia;
4
National Research and Innovation Agency, Jakarta, Indonesia
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 sufering 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 fve main themes, including empathic sufering, powerless
and hopeless sufering, predictive sufering, compliance sufering, and barriers’ wrath, which collectively caused
sufering for family caregivers.
CONCLUSION: Care provided in an atmosphere of sufering and discontent diminishes the caregiver’s quality of life
and quality of patient care. Health planners should therefore consider the challenges and suferings faced by family
caregivers and should seek to obviate them through plans.
Edited by: https://publons.com/researcher/391987/
mirko-spiroski/
Citation: Albert WKG, Fahrudin A, Lindong S, Yusuf H.
The Sufering Experiences: Family Caregiver of Home
Based Palliative Care in Malaysia. Open Access Maced J
Med Sci. 2022 Jun 15; 10(E):1623-1629.
https://doi.org/10.3889/oamjms.2022.8573
Keywords: Family caregivers; Patients with cancer;
Challenges; Caregiving
*Correspondence: Wanda Kiyah George Albert, Social
Work Program, Faculty of Psychology and Education,
Universiti Malaysia Sabah, Kota Kinabalu, Sabah,
Malaysia. E-mail: wanda@ums.edu.my
Received: 09-Jan-2022
Revised: 14-Feb-2022
Accepted: 02-Mar-2022
Copyright: © 2022 Wanda Kiyah George Albert, Adi
Fahrudin, Steward Lindong, Husmiati Yusuf
Funding: This research did not receive any fnancial
support.
Competing Interests: The authors have declared that no
competing interests exist.
Open Access: This is an open-access article distributed
under the terms of the Creative Commons Attribution-
NonCommercial 4.0 International License (CC BY-NC 4.0)
Introduction
Sufering is a common sensation that all
humans go through in their lives, particularly when
they face stressful situations while caring for loved
ones. During a major sickness, the agony is amplifed.
Family caregivers must deal not just with their loved
one’s illness, but also with the prospect of their loved
one’s death. For the quality of life, this end-of-life
disease has a higher impact on family caregivers than
it does on patients [1], [2], [3], [4], [5], [6], [7]. Family
caregivers’ quality of life ranged from medium to bad,
particularly for those caring for end-stage acute cancer
patients [6], [7], [8].
Families often become crucial providers of
support and practical help during illness, especially in
palliative care [7], [9], [10], [11]. More than half of carers
in home-based palliative care settings have sufered
since they handle a signifcant portion of the patient’s
care [7], [12], [13]. Sufering can be severe and terrible,
leading to a desire for end-of-life care [9], [12], [14].
Patients and their family carers have been
identifed as being afected by the increased sufering
experience [9], [15]. Caregivers often bear a burden
that is greater than or equal to that faced by end-stage
cancer patients. Even though family caregivers make
signifcant contributions to care, they frequently feel
neglected when their needs are overlooked by health-
care professionals. The truth is that the family caregiver
sufers just as much as the sick [16]. Secondary
patients are family caregivers who must take care of
their requirements while being monitored by healthcare
providers [17]. The medical care provider frequently
overlooks the requirements of the patient and caregivers
to ensure that the patient’s needs are satisfed [6], [18].
The experiences and sufering of caregivers of terminally
ill cancer patients will be discussed in this study.
Concepts and types of sufering
When perceived risks to themselves and their
integrity are not met with enough resources of coping
methods, including personal or psychosocial strategies,
Since 2002