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RESEARCH ARTICLE
Palliative care needs and preferences of
female patients and their caregivers in
Ethiopia: A rapid program evaluation in Addis
Ababa and Sidama zone
Mirgissa Kaba
1
*, Marlieke de FouwID
2
, Kalkidan Solomon DeribeID
1
*, Ephrem Abathun
3
,
Alexander Arnold Willem Peters
2
, Jogchum Jan Beltman
2
1Department of Preventive Medicine, School of Public Health, College of Health Sciences, Addis Ababa
University, Addis Ababa, Ethiopia, 2Department of Gynecology, Leiden University Medical Center, Leiden,
The Netherlands, 3Hospice Ethiopia, Addis Ababa, Ethiopia
*mirgissk@yahoo.com (MK); kallkidansolomon@gmail.com (KSD)
Abstract
Introduction
In Ethiopia there is an extensive unmet need for palliative care, while the burden of non-
communicable diseases and cancer is increasing. This study aimed to explore palliative
care needs and preferences of patients, their caregivers, and the perspective of stakehold-
ers on service provision in palliative programs for women, mostly affected by cervical cancer
and breast cancer.
Methods
A rapid program evaluation using a qualitative study approach was conducted in three
home-based palliative care programs in Addis Ababa and Yirgalem town, Ethiopia. Female
patients enrolled in the programs, and their primary caregivers were interviewed on palliative
care needs, preferences and service provision. We explored the views of purposely selected
stakeholders on the organization of palliative care and its challenges. Audio-taped data was
transcribed verbatim and translated into English and an inductive thematic analysis was
applied. Descriptive analyses were used to label physical signs and symptoms using pallia-
tive outcome scale score.
Results
A total of 77 interviews (34 patients, 12 primary caregivers, 15 voluntary caregivers, 16
stakeholders) were conducted. The main physical complaints were moderate to severe pain
(70.6%), followed by anorexia (50.0%), insomnia, nausea and vomiting (41.2%). Social
interaction and daily activities were hampered by the patients’ condition. Both patients and
caregivers reported that programs focus most on treatment of symptoms, with limited psy-
chosocial, emotional, spiritual and economic support. Lack of organizational structures and
policy directions limit the collaboration between stakeholders and the availability of holistic
home-based palliative care services.
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OPEN ACCESS
Citation: Kaba M, de Fouw M, Deribe KS, Abathun
E, Peters AAW, Beltman JJ (2021) Palliative care
needs and preferences of female patients and their
caregivers in Ethiopia: A rapid program evaluation
in Addis Ababa and Sidama zone. PLoS ONE 16(4):
e0248738. https://doi.org/10.1371/journal.
pone.0248738
Editor: Tim Luckett, University of Technology
Sydney, AUSTRALIA
Received: May 6, 2020
Accepted: March 4, 2021
Published: April 22, 2021
Peer Review History: PLOS recognizes the
benefits of transparency in the peer review
process; therefore, we enable the publication of
all of the content of peer review and author
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editorial history of this article is available here:
https://doi.org/10.1371/journal.pone.0248738
Copyright: ©2021 Kaba et al. This is an open
access article distributed under the terms of the
Creative Commons Attribution License, which
permits unrestricted use, distribution, and
reproduction in any medium, provided the original
author and source are credited.
Data Availability Statement: All relevant data are
within the manuscript and its supporting
information files.
Conclusions
Although female patients and caregivers appreciated the palliative care and support pro-
vided, the existing services did not cover all needs. Pain management and all other needed
supports were lacking. Multi-sectorial collaboration with active involvement of community-
based structures is needed to improve quality of care and access to holistic palliative care
services.
Introduction
In Ethiopia there is an extensive unmet need for palliative care, while the burden of non-com-
municable diseases and cancer is increasing [1]. Access to palliative care is a human right
although there are evident disparities in its provision [2,3]. In the past decade, very few of the
people in need of palliative care across the globe receive it, and referral to palliative care teams
for most patients occurs in the last 2 to 6 months of life or not at all [4,5]. In Sub-Saharan
Africa where life expectancy is short, supportive and palliative care for severely ill patients are
hardly available. Referral to palliative care early in the course of illness is important for optimal
quality of life, and at the same time reduces unnecessary hospitalizations and crowding of
health-care services [6–8].
Ethiopia is one of the Sub-Saharan countries where high burden of suffering and lack of
access to pain relief and palliative care are apparent. In this paper we assess palliative care and
support programs for women, mostly affected by cervical cancer and breast cancer, as inte-
grated part of screening activities. Breast and cervical cancer are the leading cancers among
women in Ethiopia, with an annual crude incidence rate of 29.8 and 16.3 per 100.000 respec-
tively [7]. The coverage of prevention programs in Ethiopia is increasing but still limited in
terms of components of the program and accessibility for all women at risk. When presented
in early stage cervical and breast cancer can be treated with surgery, radiotherapy or chemo-
therapy. However, most women identified with cervical and breast cancer present in advanced
stage when curative treatment is no longer an option [9]. These women and their caregivers
should receive support and appropriate care to address their needs, but comprehensive pallia-
tive care services are barely accessible.
Despite investments and programs of the Federal Ministry of Health in Ethiopia, the World
Health Organization (WHO) and several non-governmental organizations (NGOs), palliative
care services and data on palliative care needs in Ethiopia are still lacking or [10,11]. A study
conducted in Addis Ababa showed that 65% of cancer patients admitted in a tertiary referral
hospital, the majority with advanced stage disease, did not receive adequate pain management
[12]. Untreated pain and high costs associated with life-limiting illness are reported to be main
factors leading to psychosocial distress and financial crisis [13]. The Ethiopian Ministry of
Health has developed a national guideline on palliative care, but the gap with current service
provision is evident [14].
Our study aimed to explore palliative care needs and preferences of female patients with
breast and cervical cancer or other life-threatening chronic illnesses, and their primary and
voluntary caregivers in three home-based palliative care programs in Ethiopia. Furthermore,
we intended to assess the perspectives of stakeholders on the existing service provision and its
challenges. Based on our findings we present recommendations to improve and prioritize pal-
liative care provision.
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Funding: The study was supported by the Ethiopia
Female Cancer Initiative (EFCI) project of Cordaid
Ethiopia, and Treub Foundation from The
Netherlands.
Competing interests: EA is executive director of
Hospice Ethiopia. MF and JJ provided training and
supervision of cervical cancer screening activities
via the Female Cancer Foundation for the EFCI
program. The authors declare they have no
competing interests. This does not alter our
adherence to PLOS ONE policies on sharing data
and materials.
Abbreviations: ART, Anti-Retroviral Treatment; FC,
Family caregiver; FMOH, Federal Ministry of Health;
HIV/AIDS, Human Immune Deficiency Virus/
Acquired Immune Deficiency Syndrome; IQR,
Interquartile range; NGO, Non-governmental
organization; POS, Palliative outcome scale; SPSS,
Statistical packages for social science; WHO, World
health organization.
Methods
Study design
A rapid evaluation methodology (REM) using a qualitative study approach was conducted in
three home-based palliative care and support programs. The rapid evaluation methodology
(REM) was developed by WHO to evaluate the performance of health care programs and iden-
tify problems in order to develop recommendations for future programming [13]. This meth-
odology was tested in several low- and middle-income countries and was used for evaluation
of a palliative care program in Malawi [14].
Study area and period
The study was conducted in May and June 2018 in Addis Ababa, capital city of Ethiopia, and
Yirgalem town, in Sidama region, 320 km south of Addis Ababa. In Addis Ababa the palliative
care programs of Hospice Ethiopia and Mary Joy Development Association (MJDA) were
assessed, in Yirgalem town the palliative care program of Beza for Generation (B4G). At the
time of conducting this study, these programs were to the best of our knowledge the only
home-based palliative care and support programs in cancer care in Ethiopia.
Hospice Ethiopia is a NGO with both facility-based and home-based palliative care provi-
sion, trained by palliative care specialists from Uganda and Kenya. Mary Joy Development
Association and Beza for Generation are local community-based NGOs providing support to
palliative patients as part of the Ethiopian Female Cancer Initiative (EFCI), a cervical cancer
and breast cancer prevention program, managed by Cordaid Ethiopia and supported by the
Female Cancer Foundation from the Netherlands.
Study population
Looking into the total case population of each program (approximately 80–120 enrolled
patients per program) of which the majority fulfilled the inclusion criteria, combined with
reaching illustrative sample of patients and caregivers for this rapid evaluation methodology
10–15% of the total case load of each program and a matching number of caregivers (8–12
patients per setting) were interviewed. However, with 8–12 participants from the respective
sites, saturation was achieved after the fifth participant was interviewed. Additional partici-
pants were interviewed after presumed saturation was achieved to ascertain repetition of
evidence.
The primary caregiver of the interviewed patients who were, either relatives to the patient
or volunteer were, included in the study. The number of caregivers was lower than for patients,
because not all caregivers were present at the time of the scheduled interview or did not pro-
vide informed consent. All interviews were conducted individually, with the patient or care-
giver, and the researcher. In Yirgalem a translator was present as a third person when
necessary.
In addition to patients and their care givers, staff members responsible for palliative care at
the Ministry of Health, palliative care providers at facility and community levels program man-
agers of the NGOs involved in palliative care services, community and religious leaders were
participated in the study.
Data collection tool and process
We employed the rapid program evaluation methodology different data sources: 1. Patient
files and project reports; 2. Patients and their primary or voluntary caregivers; 3. Key stake-
holders from both government, NGOs and the local communities.
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Patient files and project reports were used to extract socio-demographic characteristics
(age, marital status, educational level), clinical characteristics (diagnosis, HIV status, co-mor-
bidities, medication used) and time of involvement in the program using a standardized form,
see S1 Appendix.
For interviews with patients, caregivers and stakeholders open-ended interview guides were
developed, based on a study by Herce et al [14] on palliative care in Malawi, see S2-S4 Appen-
dices. The interview guide for patients collected information on socio-demographic character-
istics, physical signs and symptoms using the adjusted Palliative Outcome Scale (POS)
validated for the African setting [15], and perceived challenges and preferences for palliative
care and end-of-life planning.
The interview guide for caregivers collected information on socio-demographic characteris-
tics, perceived support, challenges and preferences for provision of palliative care (S3 Appen-
dix). The interview guide for stakeholders included questions on existing health service
activities, and gaps and challenges in palliative care programs (S4 Appendix). All interview
guides included questions about the definition and perceived components of palliative care.
The interview guides were prepared in English and translated to Amharic language and
Sidama language by an official translator. The translation was cross-checked by two health
care professionals and a person without medical background.
The interviews were conducted by six data collectors. In Addis Ababa the team consisted of
three Amharic speaking students (two females, one male) of the Master program of Public
Health of Addis Ababa University. In Sidama zone the interviews were conducted by three
data collectors (two females, one male) fluent in both Amharic and Sidama language, with at
least a first degree in a health-related field. All data collectors were recruited based on their
experience in social and medical research. All data collectors were trained on the objective of
the study, the research protocol including the tools and procedures of data collection for two
days by the local principal investigator [MK]. The interviews took place either in the partici-
pants’ home or at the Hospice Ethiopia health center, depending on their preference, with only
the participant, the interviewer and if needed the translator present. Interviews with key stake-
holders took place in their workplace or at home, depending on their preference. The inter-
views were tape-recorded and field notes were taken by the interviewer. Each interview was
planned for approximately 40 minutes.
Data management and analysis
Descriptive analyses were used to label physical signs and symptoms using POS score. We
used two categories to express the severity of symptoms; POS score 0 to 2 indicating ‘none to
mild’ complaints, ‘POS score 3 to 5 indicating ‘moderate to severe’ complaints [16] [MK, MF,
KS].
The audio-recorded interviews were transcribed in Amharic, translated into English, and
aligned with field notes of the interviewer. Inductive approach was used and thematic analysis
was applied to the transcribed interviews. Data were coded by two independent researchers
[MK, KS] and in case of discrepancies between the two by another researcher [MF] to verify
and reach decision. Before the analysis, consensus was reached among the researchers [MK,
KS, MF] on the coded themes and subthemes. Data analysis was facilitated by Open-code ver-
sion 4.02.
Data quality assurance
A standardized data collection form was developed to extract data from patient files and proj-
ect reports. In addition to the initial training, data collectors were closely supervised by the
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local principal investigator. Interviews were conducted in settings preferred by the patient,
caregiver or stakeholder, to ensure a comfortable environment for discussion. The interviewers
did not have a relationship with the participants, nor were involved in the palliative care pro-
grams. The interviewer validated the obtained information with the participant after the inter-
view, to ensure that the answers were rightly captured.
Ethics statement
The study was reviewed and approved by the Research and Ethics committee of the School of
Public Health, Addis Ababa University, and registered with number prv/154/10. The health
authorities of the research sites provided permission for the study. An official letter of permis-
sion was provided to the administrative office of each of the selected palliative care centers.
Before data collection, the study participants were informed about the purpose of the study
and that their decision about participation would not influence the care they received.
For both patients and their caregivers written or oral informed consent was obtained to
carry out the interview. Those who gave oral consent did so in presence of a witness in their
own language (Amharic in Addis Ababa, Amharic or Sidama in Yirgalem). An appointment
was scheduled for an interview once consent was obtained.
During the interview voice recording was made after securing permission. Information
obtained was kept confidential, anonymous and used only for this research purpose. After
transcribing, the audio-tapes were deleted and hardcopies of the interview were stored at a
secured place at Addis Ababa University accessible to the principal investigator.
Results
A total of 77 in-depth interviews were conducted; 34 interviews with patients, 12 with primary
caregivers, 15 with voluntary caregivers and 16 with stakeholders.
Socio-demographic and disease related characteristics
Table 1 demonstrates the socio-demographic and disease-related characteristics of the
patients. The age of the patients ranged from 23 to 80 years with a median age of 47 years. The
educational level was low, half of the patients were illiterate (n = 18, 53%) and one third com-
pleted primary school (n = 12, 35%). The majority of patients (n = 25, 73%) was unemployed
or unable to work.
All patients were tested for HIV/AIDS, 13 (38%) were HIV-positive and therefore enrolled
in the palliative care program. Two-third of HIV-positive patients (n = 9, 69%) used antiretro-
viral treatment [17].
Table 2 illustrates that almost all caregivers (n = 26, 96%) were female and literate, 19 (70%)
were employed in governmental and non-governmental organizations. Out of 12 caregivers
that were not volunteering with NGOs, 9 (75%) were close relatives to the patients, 3 (25%)
were neighbors.
Palliative Outcome Scale score
Table 3 illustrates POS scores for patients. The complaints that were experienced as moderate
to severe by patients were pain (n = 24, 71%), anorexia (n = 17, 50%), insomnia (n = 15, 41%)
and nausea and vomiting (n = 14, 41%).
The majority of patients (n = 29, 85%) did not talk with relatives about their condition,
were very worried about their condition (n = 22, 65%) and their condition strongly affected
activities of daily life (n = 20, 59%) and their social interaction (n = 20, 59%).
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Thematic analysis
We identified the following themes in the semi-structured interview transcripts: Awareness of
palliative care, Organization of palliative care and referral pathways, Current palliative care
activities, Physical and psychological impact, End-of-life planning, Preferences for home-
based or institutional care and Challenges in palliative care provision.
Awareness of palliative care. The meaning of ‘palliative care’ was perceived differently
among the study participants, as illustrated in Box 1. Almost all health professionals described
palliative care as care given for terminally ill patients to alleviate their pain and improve the
patient’s quality of life. Yet, these professionals were not aware of the national guideline on pal-
liative care services in Ethiopia.
Table 1. Socio-demographic characteristics of patients (n = 34).
Socio-demographic characteristics Frequency Percentage (%)
Marital status
Single 2 6
Married 12 35
Separated/divorced 9 27
Widowed 11 32
Religion
Orthodox 28 82
Christian other than orthodox 5 15
Muslim 1 3
Level of education
Illiterate 18 53
Literate 16 47
Employment status
Unemployed 13 38
Work at own home or farmland 2 6
Daily labourer, unskilled/skilled 7 21
Unable to work due to illness 12 35
Livelihood supports daily expenses (n = 9)
Somewhat but other source of income needed 1 11
No 8 89
Type of diagnosis
HIV/AIDS 13 38
Cervical cancer 10 29
HTN & DM 7 21
Breast cancer 4 12
Tested for HIV
Yes 34 100
No 0 0
HIV-positive patients using ARVs (n = 13)
Yes 9 69
No 4 31
Years since diagnosis of HIV/AIDS: median 6
SD: standard deviation, HIV: Human Immunodeficiency Virus, AIDS: acquired Immunodeficiency Syndrome,
HTN: hypertension, DM: diabetes mellitus, ARV: anti-retroviral treatment.
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Most patients and caregivers reported that they “never heard” of palliative care and “don’t
understand” what palliative care is. Few patients and stakeholders other than health profes-
sionals, described palliative care as helping patients, elders and orphans who are unable to care
for themselves either due to illness or other reasons. Most stakeholders mentioned health care
at facilities, home to home visits and advice and provision of economic support as elements of
palliative care.
Organization of palliative care and referral pathways. The elements of palliative care
provided by the organizations involved in this study were not uniform. Hospice Ethiopia pro-
vided both home-based support comprising of financial support and provision of analgesics,
and outpatient care in the Hospice center which included medical, psychosocial, and financial
support and daycare activities. Trained nurses and community volunteers provided palliative
care services, while actively involving family members of the patient in care provision. Hospice
Ethiopia referred its clients for advanced medical care to Black Lion Hospital. Black Lion Hos-
pital, St Paul’s hospital and Yekatit Hospital in Addis Ababa provided palliative care services,
but none of the hospitals had inpatient hospice care or home-based palliative care programs.
Unlike Hospice Ethiopia, MJDA and B4G did not have formal referral linkages with health
facilities and focused more on home-based supportive care and less on medical care provision.
The supportive care program consisted of periodical provision of materials like cloth and food
items, financial support aimed at supporting patients for their medical expenses, and drug pro-
vision to alleviate pain by trained nurses, both at the organizations’ center and at the patients’
home. While there were no officially trained palliative care providers within MJDA and B4G,
both organizations built on their experience from home-based care to people living with HIV/
AIDS and caregivers received basic training in palliative care and support.
Patients were referred to the palliative care programs via health institutions and community
volunteers, or patients themselves visited the program centers to apply for the services. Patients
needed a referral letter from a health institution stating their diagnosis, before enrollment in
the program. Patients, and to some extent families of these patients, orphans and elders, were
supported in the programs.
Patients, caregivers and stakeholders stated that health professionals are responsible to
screen the patient, treat and refer to other health facilities if indicated. Close relatives and com-
munity volunteers were identified as primary care providers. Religious local organizations
called ‘Idirs’ were frequently mentioned to provide financial support to bedridden women,
religious leaders provided psychosocial and spiritual support.
Table 2. Socio-demographic characteristics of caregivers (n = 27).
Socio-demographic characteristics Frequency Percentage (%)
Level of education of the caregiver
Illiterate 1 4
Literate 26 96
Employment status of the caregiver
Unemployed 8 30
Employed 19 70
Caregiver—patient relationship
Close relatives 9 33
Neighbors 3 11
Volunteers 15 56
SD: standard deviation.
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Current palliative care activities. More than two third (n = 27) of the patients claimed to
have received medical, psychosocial and financial support from palliative care providers. Yet,
all patients complained that the support they received was not sufficient. It was hard to specify
this need in detail, although repeated reference was made to persisting pain and failure to
make their living (Box 2).
The problem of insufficient palliative care provision was well-recognized at Ministry of
Health level, related to insufficient budget, human resources and attention for palliative care
services.
Table 3. Ratings of patients’ signs and symptoms using the adjusted African Palliative Outcome Scale (POS).
Signs and symptoms Frequency Percentage
Pain
None-mild 10 29.4
Moderate-severe 24 70.6
Nausea and Vomiting
None-mild 20 58.8
Moderate-severe 14 41.2
Constipation
None-mild 23 67.6
Moderate-severe 11 32.4
Diarrhea
None-mild 30 88.2
Moderate-severe 4 11.8
Anorexia (trouble in eating)
None-mild 17 50.0
Moderate-severe 17 50.0
Coughing
None-mild 25 73.5
Moderate-severe 9 26.5
Trouble in breathing
None-mild 28 82.4
Moderate-severe 6 17.6
Insomnia (trouble in sleeping)
None-mild 19 58.8
Moderate-severe 15 41.2
Worried about their health
None-mild 12 35.3
Moderate-severe 22 64.7
Sharing with family or friends about their health
None-mild 29 85.3
Moderate-severe 5 14.4
Daily activities affected
None-mild 14 41.2
Moderate-severe 20 58.8
Social interaction affected
None-mild 14 41.2
Moderate-severe 20 58.8
None-mild = POS score 0, 1 or 2, and Moderate-severe = POS score 3, 4 or 5.
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Box 1. Awareness and organization of palliative care
Awareness about palliative care
“I never heard about palliative care.I usually see people coming to the Hospice center and
thought these are people who do not have support and come to the center to seek support.”
(35 year old, female, HIV-positive patient)
“We know death is an inevitable event but when we try to advice patients not to lose hope
and be ready for that, I think this is useful for the patient. That is probably an important
care although this is not widely known and available to all patients.”
(63 year old, male, religious leader)
“I think it is giving a home to home care for patients with severe sickness which is non cur-
able.Through this service their pain could be relieved to some extent so that they may pass
without pain.”(26 years old, female, volunteer)
Organization of palliative care
“Support to a patient who is seriously sick is often a family and community affair.At
household level family members support on a daily basis to meet the demand of the patient.
Community members also visit and offer advice and encouragement.Health facilities,in
my view,do not help with social,spiritual and economic demands of the patient.They are
responsible only for routine health service provision.”(30 year old, female, volunteer)
“As a religious person we provide spiritual support to sick people, and health facilities pro-
vide health care. Both services are meant to improve the quality of life of the patient.”
(63 year old, male, religious leader)
Box 2. Current palliative care activities
“I received drugs and some money from Hospice.However,I want to recover fully from my
illness and get back to my routines.I need more support that may help me full recovery
and support to my children.”(70 years old, female, congested heart failure patient)
“She (the volunteer provider) has been caring. However, I am not happy and lose hope
when my pain comes back. I then feel uncertain about my life. I feel like am dying. It is bad
to live under uncertainty, losing your ability to make decision about myself. The volunteer
at times fails to help under such circumstances.”
(42 years old, female, chronic kidney disease patient).
“There is a long way to go to improve palliative care service in Ethiopia. There is no inde-
pendent case team responsible to coordinate palliative care within the Ministry of Health
or in regional health offices. As a result, there is no budget allocated for the program, no
formally trained human resources and most importantly this is not given as much atten-
tion as other programs. In general, for me it is very difficult to say that there is palliative
care as holistic as it should be.”
(45 year old, female, palliative care focal person) MOH)
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Physical and psychological impact. All patients reported panic, anxiety and sadness
when they heard their diagnosis. Most patients recalled they refrained from their daily activi-
ties and social interactions.
Patients expressed their perception of their disease with words like “painful”, “bad disease”
or “disgusting”. Women who were bedridden due to advanced cervical cancer reported to
have experienced continuous, aching, foul smelling vaginal bleeding, and several women with
different diagnoses reported severe pain to the extent of difficulty in breathing.
All patients experienced physical pain, psychosocial or emotional grief and spiritual
neglect.
Patients agreed that spiritual support from religious leaders gave hope in their situation,
although the religious leaders did not receive adequate training within the palliative care
programs.
End-of-life planning. The majority of participants were not aware what their disease
meant in terms of survival, and most patients (n = 25) did not have an end-of-life plan. The
volunteer providers at community level also did not recognize these implications (Box 4).
Preferences for institutional or home-based care. Half of the patients (n = 18) preferred
to stay at home and be cared for at home. Their preference was based on having company
from family members, unlike in health facilities where patients would be lonelier. Some
Box 3. Physical and psychological impact
“I was very sick and couldn’t do my routine activities.So,I quitted my job because of the
illness plus I have to now become dependent on someone else. . . I am hopeless and sad.I
am however getting support from Hospice Ethiopia which lessens the tension I am in.”
(58 year old, female, cervical cancer patient)
“I bleed every time.It clots and clots and brought offensive smell since I do not have support
to clean it and of course no one comes closer.I got weaker and weaker.Only recently volun-
teers from Beza came to help me–thank God.”
(38 year old, female, HIV-positive patient)
“I enclose myself in the house because people tell me quite indirectly that I stink.Because of
this,I always cry and wish I could kill myself.”
(52 year old, female, hypertensive and diabetic patient)
“When you are largely dependent on others,you feel to be valueless.That compels you at
times to wish death the soonest.What should I do?You know what; I would love to die to
get away from this suffering.”(46 year old, female, cervical cancer patient)
“I suffered from the disease that restricted my movement. I have severe cough and accom-
panying pain of my abdomen and nausea. Although I was told there is no treatment, I
can’t pay for better medical service. This makes me sad and feel worthless. At times I ask
myself what mistake did I commit for I feel this is nothing but punishment.”
(77 years old, female, breast cancer patient)
“Following regular visits by the priest,I do regular prayer and got much stronger inside.I
am also using holy water at home now nearly for a year.I am feeling much better with my
health.”(30 year, female, HIV-positive and skin cancer patient)
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patients mentioned that health care staff was not respectful to patients and would not care ade-
quately for their symptoms like pain.
Other patients preferred provision of palliative care in health facilities in order to be in
close proximity to medical care when needed and to have more privacy than at home (Box 5).
Challenges in palliative care provision. The collaboration between potential stakeholders
and their respective roles and responsibilities were not well defined. Providers felt that there is
no clear guideline on palliative care provision, while patients and caregivers were looking for
more support.
Providers at different levels reported challenges in palliative care provision. The most com-
mon challenges included lack of awareness among community and facility level providers, lack
of guidance for care providers, lack of a structure that clarifies roles and expectations at differ-
ent levels, lack of accountability and poor commitment of health care staff to palliative care
programs.
At community level, volunteers reported to have limited information about the service. The
shortage of volunteers and severity of the disease distressed the volunteers who are willing to
care more for their patient. Patients who are bedridden revealed to suffer from dwindling live-
lihood, lack of appropriate information about their status and lack of support in relieving pain
when needed.
Box 4. End-of-life planning
“No we do not have an end-of-life plan. . .Because we thought that planning about end-of-
life is interfering with the work of God.”(40-year-old, female, volunteer)
“I pay for Idir and church because this is what everyone does and it is meant to ensure easy
burial. I don’t plan for end-of-life because I wish to live a healthy life.”
(65 year old, female, breast cancer patient)
“Since I believe that God helps me; I don’t die and get separated from people I love and live
together.I keep praying believing the Almighty will save me.So,I fight my disease and
want survive longer.”(58 year old, female, cervical cancer patient)
Box 5. Preference for institutional or home-based care
“I prefer to stay at home.I prefer to be with my families.There are organizations and
health centers which asked to take and care of me in their institution but I refused them.I
fear to be alone there in the hospital.”(47 years old, female, HIV-positive patient)
“Care at home is much better,for family members sympathize and give me much care.In
the health facilities,professionals are not respectful and do not show any sympathy and do
not care much for the pain I suffer from” (80 years old, female, arthritis patient)
“I prefer to get care at health facilities.This will minimize the number of people that visit
me at home and give me difficult time to answer different questions that at times are
annoying” (42 years old female, HIV-positive patient)
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Discussion
Our study focused on the perceived needs and preferences of both patients, caregivers and
stakeholders in home-based palliative care programs, and is one of the first studies to be con-
ducted about this topic in Ethiopia. We found that awareness of palliative care was limited and
several challenges need to be addressed; insufficient medical and psychosocial support to
address patients’ complaints like severe pain, anorexia and anxiety in a holistic approach, lack
of support for palliative care providers and caregivers to cope with their emotionally challeng-
ing task, lack of collaboration between stakeholders with a need to define roles and responsibil-
ities, and create awareness and ownership at both community, healthcare and policy level to
make palliative care a priority.
Awareness of palliative care
Our study showed poor awareness of palliative care among all participants at both policy level,
health facility level and community level. Health care professionals were not familiar with the
Ethiopian national guideline, patients and caregivers were not aware of the implications and
existing structures of palliative care. Hence it is difficult for patients and their caregivers to use
a service of which they are not well aware, and for care providers to provide an adequate level
of palliative care. This situation is not limited to Ethiopia, but was found in women living in
other parts of Africa, Asia, Eastern-Europe and the United States as well [5,18–21]. Limited
awareness highlights the need for improved understanding of what palliative care means and
whom it can benefit.
Box 6. Challenges in palliative care
“In as much as palliative care improves the quality of life of a terminally sick person,the
service is not as holistic as it should be and there is no line of accountability at different lev-
els.For me mere focus on pain management and provision of financial support which is
not sustainable,is not wise.”(38 year old, male, palliative care focal person)
“. . .When we compare administrative support even the Ministry of Health didn’t give
much focus to palliative care.This can be explained in terms of lack of budget and neces-
sary training or man power.As I told you we are in establishing the palliative care unit but
we face a lot of challenges since the administrators of the hospital are not that much dedi-
cated to this service.”(42 year old, male, palliative care focal person)
“To me the major challenge is the non-supportive attitude and poor commitment of pro-
viders especially at facility level. I witnessed that professionals at facility level are not well
prepared to help patients with non-curable diseases, including how they break the bad
news is unprofessional. They don’t care much about the terminally ill patients. They do not
know grief counseling and how to support patients.”
(38 year old, male, hospital palliative care focal person)
“As volunteers, myself and my friends involve in this are very happy to care for bedridden
patients. However, we do not have relevant information on what we should do and should
not do. Often the suffering of the patient is so consuming that some of us get even sick.
Besides, we do not have protective supplies such as gloves, so that we get worried.”
(42 years old, female, volunteer)
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The lack of awareness of palliative care draws a parallel to the care for HIV/AIDS patients
during the early years of the epidemic. It has taken many years of ongoing investment at all lev-
els, including strong awareness programs at community level, to integrate HIV/AIDS care in
routine health care activities and to make it accessible at health center level. Experiences from
the time when HIV incidence was increasing plays an important role in rolling out palliative
care services. For the two community-based organizations involved in our study, MJDA and
B4G, the home-based care service they provided for people living with HIV/AIDS provided a
useful foundation for the palliative support program. Still, the level of care currently provided
proved insufficient to meet patients’ needs. and an organized effort at national and regional
level is needed to develop norms and guidance for palliative care provision. To improve aware-
ness at community level, coffee ceremonies have proven to be a context-specific and effective
method in Ethiopia to discuss sensitive health topics like HIV and cervical cancer screening,
and could be used to start community conversations about palliative care [22,23].
Organization of palliative care
Our findings indicated that collaboration between different stakeholders in palliative care ser-
vices was not well organized and that palliative care in Ethiopia is yet at its initiation phase.
The actual practice was merely focused on medical care and financial support, rather than a
holistic approach. The World Health Organization recommends palliative care programs to
engage with the local health services, while health partnerships at national and regional levels
are important to promote culturally safe palliative care service delivery [2]. The development
of a national guideline on palliative care in Ethiopia was a good first step to align different
stakeholders, however, for translation to practice much more is needed. This includes incorpo-
rating palliative care in the medical and nursing curriculum, and appoint palliative care focal
persons in each regional health bureau and health facilities up to the level of health centers.
In home-based programs, caregivers are an essential component. In the present study they
reported confidence in the care they provided while at the same time they asked for more
training. Despite training in palliative care skills and ongoing support in the studied programs,
in practice their skills did not always meet their needs and demands. The effect of peer support
where caregivers can share experiences with each other could be explored to overcome their
perceived lack of skills. Furthermore, home-based palliative care programs should organize
care with case managers who evaluate the needs of both patient and caregiver on a regular
basis and will address which needs can be alleviated by palliative care.
Pain and symptom control
Despite participation in palliative care programs, the majority of patients who participated in
our study reported moderate to severe pain. Our findings are in line with a study conducted in
Addis Ababa, Ethiopia, where 65% of admitted cancer patients reported inadequate pain con-
trol [12]. Most patients in our study did use analgesics, however, data on the type, dosage,
duration and adherence remained unclear and were not well-documented in the patient files.
This finding raised the question whether pain was not adequately recognized or managed, or if
analgesics like morphine were prescribed but not available, affordable or administered cor-
rectly. In future research, we recommend to explore pain control and its limitations more in-
depth.
Psychosocial care and the role of religion
In our study many patients reported to feel supported by their relatives and their religion.
Praying provided hope and helped to get relief from their symptoms and suffering. We did not
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encounter women who stopped using medication in favor of spiritual treatment. However,
our cross-sectional study design among patients who are enrolled in a palliative care program
might not be representative for palliative patients who do not have access to these programs.
Studies in Ethiopia, Uganda, Kenya and Zimbabwe on palliative care and cervical cancer
screening demonstrated that African women value support from family members and spiritual
influences that play a role in their daily lives, and would prefer religious or non-pharmacologi-
cal healing as compared to existing health care services [1,24–26].
End-of-life planning
When designing the study, we debated whether to include questions about end-of-life plan-
ning, because it is a sensitive matter to discuss and culturally sensitive interviewing is needed.
In practice the question was well accepted by patients, and we found that 2 out of 5 patients
had made plans, half of the patients preferred to receive palliative care at home. This is in line
with a study of Reid et al conducted in Ethiopia, which reported that the majority of patients
(57%) wanted to die at home [1]. However, in the study of Reid et al, the preference for dying
at home was mainly reported among patients who received home-based palliative care or who
experienced low pain scores. Patients with poorly controlled pain preferred in-hospital death
and patients with chronic non-communicable diseases had a slight preference (58%) to die at
home. In our study, all patients received home-based care and pain was not well controlled.
The proportion of patients with moderate to severe pain was comparable with patients receiv-
ing home-based care in the study of Reid. The difference in preference between these patient
groups might be explained by patients’ experiences with in-hospital care. As mentioned previ-
ously, a study in Addis Ababa demonstrated that pain was poorly controlled in patients admit-
ted for palliative care. This could influence patients’ preference where to receive end-of-life
care. Both studies illustrate it is important to organize the control of pain in palliative setting,
and when this care is available at home, it can prevent unnecessary hospitalizations and crowd-
ing of healthcare facilities.
Still, the majority of patients and caregivers in our study were not involved in end-of-life
planning and avoid speaking about end-of-life. Studies showed discussing about end-of-life
made patients more realistic about their situation and prognosis, and reduced the likelihood of
receiving intensive treatment near death [27–29].
Preferences for home-based or institutional care
Half of the patients preferred to receive palliative care at their own home, because they con-
sider home-based care as safe and it will ensure the presence of their family members. Other
patients focused on the delivery of good quality care irrespective of the care setting. These dif-
ferent preferences provide opportunities for both facility and home-based care programs,
depending on the patients’ condition. In a setting with overburdened health facilities, home-
based care could be an important service to prevent unnecessary hospitalizations.
Limitations
The programs we assessed were different in their set-up and services, therefore challenges and
strengths of one program might not be experienced by patients or caregivers in the other pro-
grams. Our recommendations, however, combine our findings from the different study set-
tings and methods used which we believe resulted in a representative picture of the programs.
We included only female patients, because they were the target group for two (MJDA and
B4G) out of the three home-based palliative care programs. Although the needs and
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preferences we identified were not specific for the female role in the community or for com-
plaints specific to female cancer, our findings cannot be extrapolated to male patients.
In patient files and project reports, data on initial management and pain scores were often
missing. It was not possible to retrieve this via the patient or care provider due to recall bias. A
prospective study design into the effect of palliative care on pain and the quality of life could
help to answer these research questions.
Recommendations
To understand which strategies are well-accepted and effective for patients and caregivers, we
propose to conduct a prospective study in both hospital and home-based care setting with
health care providers trained in palliative care and including a community-based awareness
strategy. We suggest to assess the level of awareness at different levels, the number of referrals,
symptom management and quality of life before, during and after program, if possible in a
cluster design or stepped-wedge approach.
The Lancet Commission on Palliative Care and Pain Relief estimated that the costs for an
essential package in LMIC is around 3 USD per capita [3]. When the service becomes more
widely available, community health workers (in Ethiopia known as health extension workers)
can inform their respective communities and refer for services. It is essential to include exist-
ing community networks, including Idirs, into the awareness strategy, in order to create a plat-
form that is supported throughout all levels. The current unmet need combined with the
increase of non-communicable diseases and the growing and aging population call for action
in end-of-life care. On the other hand, structural limitations to palliative care were found evi-
dent from the study where there is no responsible structure, policy directions and guidance
that could have defined who is responsible for what and how coordination could be made.
This calls for more organized effort by the Federal Ministry of Health to organize responsible
structure with competent human resources and financial resources at different levels. With
that structure, it is critical to define types of care at household, community and facility level
and defined roles and responsibilities of the different stakeholders.
Conclusion
Our study explored palliative care needs and preferences of female patients with breast cancer,
cervical cancer, HIV/AIDS or other life-limiting chronic diseases, and their caregivers in three
home-based palliative care programs in Ethiopia. Patients and caregivers positively experi-
enced the care and support provided, however, it was not sufficient. The majority of patients
still suffered from moderate to severe pain and there was an unmet need in psychosocial, spiri-
tual, economic and emotional support. Emotional and spiritual support was mainly provided
by religious leaders and relatives. A minority of patients planned for the end-of-life, hoping
their situation would still improve.
Considering the lack of palliative care options in Ethiopia and the challenges patients and
caregivers are facing, a clear organizational structure including ongoing training and supervi-
sion of health care providers and caregivers is essential. The current practice with relatives as
caregivers and home-based care calls for active involvement of community-based networks
and structures. Multi-sectorial collaboration is needed to improve the quality of care and
access to palliative care services.
Supporting information
S1 Appendix. Data collection form for patient files and project reports.
(DOCX)
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S2 Appendix. Interview guide for patients (English version).
(DOCX)
S3 Appendix. Interview guide for caregivers (English version).
(DOCX)
S4 Appendix. Interview guide for stakeholders (English version).
(DOCX)
S1 Dataset.
(RAR)
Acknowledgments
The authors want to express their gratitude to all study participants for willingly sharing their
thoughts and stories. We thank Dr Jamie Mumford and Sue Mumford of Hospice Ethiopia
UK for their valuable input and comments. The authors would like to pass their gratitude to
the EFCI program which is managed by Cordaid Ethiopia and supported by the Pink and Red
Ribbon, Bristol Myers Squibb Foundation, the Female Cancer Foundation and Addis Ababa
University School of Public Health, and to Hospice Ethiopia for supporting this study.
Author Contributions
Conceptualization: Mirgissa Kaba, Marlieke de Fouw, Kalkidan Solomon Deribe, Jogchum
Jan Beltman.
Formal analysis: Mirgissa Kaba, Marlieke de Fouw, Kalkidan Solomon Deribe.
Funding acquisition: Marlieke de Fouw.
Investigation: Mirgissa Kaba, Kalkidan Solomon Deribe, Ephrem Abathun.
Methodology: Mirgissa Kaba, Marlieke de Fouw, Kalkidan Solomon Deribe.
Project administration: Mirgissa Kaba, Marlieke de Fouw.
Resources: Mirgissa Kaba.
Software: Kalkidan Solomon Deribe.
Supervision: Mirgissa Kaba.
Validation: Mirgissa Kaba.
Writing – original draft: Mirgissa Kaba, Marlieke de Fouw, Kalkidan Solomon Deribe.
Writing – review & editing: Mirgissa Kaba, Marlieke de Fouw, Kalkidan Solomon Deribe,
Ephrem Abathun, Alexander Arnold Willem Peters, Jogchum Jan Beltman.
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