The unmet needs of palliative care among patients with non-malignant chronic illness in Indonesia: A phenomenology study
Dublin Core
Title
The unmet needs of palliative care among patients with non-malignant chronic illness in Indonesia: A phenomenology study
Subject
chronic illness; emotions; humans; noncancer; palliative care
Description
Background: People with chronic illness tend to report multiple and
complex symptoms that decrease their ability to meet their needs and
quality of life (QoL). As an approach to address people with chronic illness,
palliative care (PC) in Indonesia is still primarily focused on people with
chronic malignancies. This results in that paradigm meaning the spectrum
of palliative care is interpreted narrowly only for cancer or end-of-life (EOL)
patients.
Purpose: This study explores the experience and needs of patients
diagnosed with non-malignant chronic illness toward their illness to identify
the need for palliative care.
Methods: Semi-structured interviews were conducted on seven patients with
non-malignant chronic illness. An ECOG adaptation palliative patient score
developed by Dr. Cipto Mangunkusumo National General Hospital (RSCM)
was used to screen the participants. Only participants with a palliative score
of four or higher (≥4) were interviewed. All data were recorded, transcribed,
and analyzed using Colaizzi’s method.
Results: There are six major interrelated themes with one sub-theme
emerging from this qualitative study that uniquely match with the illness
trajectory of non-malignant chronic patients. The themes are: (1) negative
feelings that cannot be described at the time of diagnosis; (2) ignorance
of the disease process (sub-theme: late realization that illness cannot be
cured); (3) helplessness during the medication/treatment process; (4) shame
of being a burden to family and surroundings; (5) limited access and support
; and (6) family and God as motivation and hope reinforcement to recover at
the end of illness stage.
Conclusion: People with non-malignant chronic illnesses complain of
several challenges, which are not much different from those with cancer.
Therefore, patients with non-malignant chronic illness also have a similar
need for palliative care. A deeper and broader assessment of palliative care
should also be implemented in patients with non-malignant chronic illness
after the early diagnostic process.
complex symptoms that decrease their ability to meet their needs and
quality of life (QoL). As an approach to address people with chronic illness,
palliative care (PC) in Indonesia is still primarily focused on people with
chronic malignancies. This results in that paradigm meaning the spectrum
of palliative care is interpreted narrowly only for cancer or end-of-life (EOL)
patients.
Purpose: This study explores the experience and needs of patients
diagnosed with non-malignant chronic illness toward their illness to identify
the need for palliative care.
Methods: Semi-structured interviews were conducted on seven patients with
non-malignant chronic illness. An ECOG adaptation palliative patient score
developed by Dr. Cipto Mangunkusumo National General Hospital (RSCM)
was used to screen the participants. Only participants with a palliative score
of four or higher (≥4) were interviewed. All data were recorded, transcribed,
and analyzed using Colaizzi’s method.
Results: There are six major interrelated themes with one sub-theme
emerging from this qualitative study that uniquely match with the illness
trajectory of non-malignant chronic patients. The themes are: (1) negative
feelings that cannot be described at the time of diagnosis; (2) ignorance
of the disease process (sub-theme: late realization that illness cannot be
cured); (3) helplessness during the medication/treatment process; (4) shame
of being a burden to family and surroundings; (5) limited access and support
; and (6) family and God as motivation and hope reinforcement to recover at
the end of illness stage.
Conclusion: People with non-malignant chronic illnesses complain of
several challenges, which are not much different from those with cancer.
Therefore, patients with non-malignant chronic illness also have a similar
need for palliative care. A deeper and broader assessment of palliative care
should also be implemented in patients with non-malignant chronic illness
after the early diagnostic process.
Creator
Rona Cahyantari Merduaty1
* , Tuti Nuraini1 , Sihwastuti Sihwastuti2
* , Tuti Nuraini1 , Sihwastuti Sihwastuti2
Source
http://jkp.fkep.unpad.ac.id/index.
php/jkp
php/jkp
Date
: December 25, 2024
Contributor
PERI IRAWAN
Format
PDF
Language
ENGLISH
Type
TEXT
Files
Collection
Citation
Rona Cahyantari Merduaty1
* , Tuti Nuraini1 , Sihwastuti Sihwastuti2, “The unmet needs of palliative care among patients with non-malignant chronic illness in Indonesia: A phenomenology study,” Repository Horizon University Indonesia, accessed February 11, 2026, https://repository.horizon.ac.id/items/show/10737.