ASSESSMENT OF LEVEL OF KNOWLEDGE OF HEALTH

CARE PROFESSIONAL TOWARDS THE MANAGEMENT OF

PATIENTS ON PALLIATIVE CARE IN ICU AT JUBA
TEACHING HOSPITAL

SUSAN JURU ELISAMA

REG. NUMBER: 341/2024

RESEARCH PROPOSAL SUMMITED IN THE PARTIAL

FULFILLMENT FOR THE REQUIREMENT FOR THE AWARD
OF DIPLOMA IN REGISTERED NURSING AT JUBA COLLEGE
OF NURSING AND MIDWIFERY
CHAPTER ONE: INTRODUCTION TO THE STUDY

1.0 Introduction

This chapter presents the background of the study, Significance of the study, Statement of the
study problem, Justification of the study, Study questions, Study objectives, and conceptual
frame work.

1.2 Background of the study

Palliative care according to the World Health Organization (WHO) is the active total care of
patients whose disease is not responsive to curative treatment. Control of pain, of other
symptoms, and of psychological, social, and spiritual problems is paramount, the goal of
palliative care is achievement of best quality of life for patients and their families (WHO, 2014).
Palliative care aims to affirm life while regarding dying as a normal process, to provide support
to enable patients to live as actively as possible until death and to offer support to the family
during the patient’s illness and in their bereavement (Lal M. et al, 2015).

Palliative is a care that promotes the quality of life of patients and their relatives fronting a
problem linked with the life-threatening disease through avoidance and decreasing the suffering
by means of early detection, perfect evaluation, and treatment of pain and other problems
physical and nonphysical (Thomas et al, 2015). Palliative care is a multidisciplinary approach
and is focused on both the patient and their family (Clin J. et al, 2015). Commonly used terms
such as supportive care, best supportive care, palliative care, and hospice care were rarely and
inconsistently defined in the palliative oncology literature (Thomas et al, 2015). Palliative care
includes the time range starting from the onset and progress of the chronic illness, through the
terminal stages of the disease and until the end of life. It is a collaborative approach
encompassing various managements, notably include medical and spiritual management (Julie
NK et al, 2017).

Over the last 30 years, since Africa’s first hospice was set up in Zimbabwe, various models of
end of life care have emerged in sub-Saharan Africa these include home-based care, hospital
units, freestanding inpatient hospices, day care and hospital support teams (Wright M, et al,
2014). Nonetheless, due to poverty, lack of resources and infrastructure, care provision at the end
of life is scarce across the continent (Harding R. et al, 2015). A study mapping end of life care
initiatives showed that there were services in only 26 of 47 countries, and only in Uganda, South
Africa, Kenya and Zimbabwe are services reaching a level of integration into the existing health
system (Stjernsward et al, 2016). Indeed, across the continent the response to the need for end of
life care has been piecemeal with governmental and non-governmental organizations playing a
range of roles (Christopher et al, 2015).

1.3 Statement of the Problem

Every year nearly half a million people die of cancer in sub Saharan Africa. Despite the rapid
improvement of palliative care for cancer, the expansion of the service is still low (Harding et al,
2013). The WHO public health strategy for palliative care aims to increase access to palliative
care services through its integration into healthcare systems (Sepúlveda et al, 2015). Studies of
hope in palliative care, over the past ten years, have focused primarily on those individuals in the
advanced stages of cancer and the human immunodeficiency virus (Herth KA et al, 2015).
Therefore, the value of palliative care to nurses who deliver a large proportion of the care to
chronically ill patients is unquestionable and there is a need to help and educate nurses for the
provision of palliative care service and care for terminally ill patients.

A challenge facing the provision of palliative care in Sub-Saharan Africa is how coverage of
services can be increased whilst maintaining quality (Grant et al, 2015) Care should be patient-
centered, effective and efficient and ensure health system responsiveness (McKenna et al, 2017).
This is particularly important for people living with serious illnesses in which prominent aspects
such as clinical uncertainty, the involvement of significant others, and the need for high-quality
communication need to be considered (Giusti, et al, 2020). However, there is no one approach
for palliative care service provision across settings in Sub-Saharan Africa , and provision must
involve the development of culturally appropriate programmes that meet local needs and
priorities (Powell et al 2014) The evidence base underpinning palliative care provision in Sub-
Saharan Africa is very limited, including a critical gap in the perspectives of the service users.

In light of the pressing awareness of the need to increase coverage of End of Life care services
on the African continent, emphasis is often placed on the generation and appraisal of evidence
that reports on efficacy and effectiveness, Undoubtedly, such evidence is important and
measurable outcomes are valuable to the improvement of service quality (Robert et al 2015).
Nevertheless, evidence based on the experiences of actors involved at the palliative care, and the
historical, political, cultural context that influences the way people approach illness and death
should not be overlooked (Lianne et al, 2015). This type of evidence is needed to ensure that
interventions developed on the basis of the needs of Western populations are not transplanted
into African contexts with their varied epidemiological, cultural and organizational set ups
(Bowman K: et al, 2014).

Alongside ongoing physical and social needs, information needs were prominent among
participants before accessing palliative care (Mohabbat et al, 2017). Limited information prior to
accessing palliative care could have led to unrealistic expectations relating to outcomes from
care (Ghonhour et al 2016). This has important implications for healthcare provider education
programmes that should emphasize the provision of information to people prior to referral to
palliative care services

1.4 Justification

Palliative care remains poorly understood and practiced, especially in regional south Sudan (Zeru
et al. 2020). There is inconsistent practice with limited knowledge evident in public and private
hospitals (Kassa et al. 2014), although a study in regional health settings found that nurses had a
good level of palliative care knowledge (Zeru et al. 2020a). These few studies examining the
knowledge and practice of palliative care among nurses, only used quantitative data from those
working in a few health-care settings, with none aimed to describe the barriers to poor practice
(Kassa et al. 2014).

Therefore this study aimed at assessing the level of knowledge, attitude and practice of health
care workers towards palliative care in Juba teaching hospital with aim of addressing the gaps in
general practice

1.4 Significance of the study

This study is significant in in the field of nursing that would help to enhance the nursing skills
towards provision of palliative care in the health institutions

The finding of this study will help the hospital management to identify problems related to
provision of palliative care and take appropriate actions in addressing the gaps
It is also important in the community as one way to address and educate the community member
on general care of the patients who are both at their end of life and those with terminal illness

The researcher will also use the result of this finding as a requirement for the award of Diploma
in registered nursing

1.5 Study objective

1.5.1 Broad objectives

To assess the level of knowledge of health care professional towards the management of patients
on palliative care in ICU at Juba teaching hospital
1.5.2 Specific objectives

To assess the knowledge of health care professional towards the management of patients on
palliative care in ICU at Juba teaching hospital
To assess barriers to implementation of palliative care among health care professional towards
the management of patients on palliative care in ICU at Juba teaching hospital
To assess the practice of health care professional towards the management of patients on
palliative care in ICU at Juba teaching hospital
1.6. Study questions

1.6.1 Broad question

What is the level of knowledge of health care professional towards the management of patients
on palliative care in ICU at Juba teaching hospital?
1.6.2 Specific questions

What is the knowledge of health care professional towards the management of patients on
palliative care in ICU at Juba teaching hospital?

What is the barriers to implementation of palliative care among health care professional towards
the management of patients on palliative care in ICU at Juba teaching hospital?

What is the practice of health care professional towards the management of patients on palliative
care in ICU at Juba teaching hospital?

1.7 Conceptual frame work

 knowledge

palliative care

barriers practice
CHAPTER RWO: LITERATURE REVIEW
2.0 Introduction
This chapter presents the results from previous study which were related to this study of
knowledge of health care professional towards the management of patients on palliative care in
ICU at Juba teaching hospital

2.1 The knowledge of health care professional towards the management of patients on
palliative
The result of the study done in Kenya by Hadgu et al., (2020) revealed that there was good
knowledge about palliative care among health workers as nearly 89.9% of the respondents knew
the definition of PC and 80.6% agreed that PC is being given when patient's conditions are
downhill trajectory or deterioration. Similarly, 86.5% of nurses responded that the extent of the
disease determines the method of pain treatment. In addition, Drug addiction was a major
problem when morphine is used on a long-term basis for the management of pain
289(81.4%).Forty-nine percent of the subjects agreed that accumulation of losses renders burn
out for those who work in PC. Only two hundred twenty-three (62.8%) had good knowledge out
of the whole study participants, towards PC

In a study done by Margaret et al (2023) among 560 nurses showed that about 81% (183) of
nurses indicated they knew about palliative care, 56.7% (97) responded that it is only appropriate
where there is evidence of patient deterioration. Further, 77.2% (132) of nurses indicated that
drug addiction is the major problem when morphine is used long-term, of the participants, only
40% (69) scored 75% or greater for the modified version of the PCQN test (Nyssen et al, 2020).
The highest number of incorrect responses was for the ‘pain and symptom management’
category of the PCQN item (156, 91%), followed by the “psychological and spiritual care” item
(142, 83%)

The study also revealed mixed knowledge about palliative care, as among 348 participants, the
majority of the participants, 310 (89.1%) agreed that palliative care focuses on the relief and
prevention of suffering and 319 (91.7%) believe that PLWHA required palliative care, most
participants, 252 (72.6%) believed “palliative care is disease-oriented and not person oriented,”
others believed that palliative care “is concerned with prolongation of life”, 279 (80.6%); “use of
placebos is appropriate in the treatment of some types of pain”, 252 (72.6%); “extent of the
disease determines the method of pain treatment”, 283 (81.6%) and that palliative care is “just
terminal care”, 165 (47.4%). Majority agreed that “palliative care incorporates the whole
spectrum of care: medical, nursing, psychological, social, cultural and spiritual” 285 (81.9%) and
that “patient’s family members’ views should be considered in palliative care, 297 (85.6%)”

The results of the study done in Botswana showed that the level of health workers knowledge
and behavior were related to the highest education level, professional title, experience caring for
a terminally ill child/kinsfolk, and total hours of palliative care education and training (Slater PJ,
et al, 2017). The higher the education level, the better the knowledge, of health workers, which is
consistent with the results of a previous study (Hussin et al., 2018). Highly educated health
workers can take the initiative to learn according to their own needs, expand their knowledge
field, access the most advanced knowledge and better understand the meaning and significance
of palliative care. As a result, they have a more positive attitude and motivation to participate in
palliative care, and therefore have higher levels of knowledge, attitude and behavior (Muhua et
al, 2023).

2.2 The facilitating factors or barriers to implementation of palliative care among health
care professionals
A study done in Uganda shows that Beliefs towards advanced care plan(palliative) were found to
be affected by a number of social cultural factors, these include discussions about death and
dying being a ‘‘taboo”, and are only for religious leaders; every death must have a cause (Guma
et al, 2013). Religion also plays a major role in that some health workers believe in the power of
divine intervention for healing and often use prayer as part of the treatment. 32% of health
professionals believed that the patients should be kept alive as long as possible using medical
means, 51.5% of respondents prefer keeping patients alive at all costs despite a terminal
diagnosis,16% felt that their values and beliefs are in conflict with the goals of palliative care,
28.6% feel guilty when they stop life-sustaining treatment and 82% reported requests from
family members to withhold information about the prognosis from the patient (Samuel et al
2023).

The finding of the study done in Tigray found that Nurse's attitude Toward Care of the Dying
were influential to the care given to the patient, it was found that more than half of the
participant nurses 217(61.1%) strongly disagree that as a patient nears death; the nurse may
withdraw from his/her participation, In contrast majority of the respondents, 197(55.5%) Giving
nursing care to the chronically sick patient is a worthwhile learning experience was agreed, One
hundred eighty-nine agreed Families should be concerned about helping their dying member
make the best of his/her remaining life. On the other hand, over half of the nurses 210(59.2%)
and 214(60.3%) Strongly disagreed that nursing care should extend to the family of the dying
person, would be uncomfortable talking about impending death with the dying Person
respectively (Teklay et al., 2020).

Christopher et al (2014) revealed that Low levels of support from other community members
results in a social burden of End of life care for carers, Identified causes of this lack of social
support included caregivers’ fears of community members’ reactions towards people with
HIV/AIDS, and carers withdrawing from social activities due to the demands of caring.
(Brouwer et al, 2015) Additionally, the nature of the illness can cause social and personal
disruption, although carers had previously sought help from traditional healers, due to the costs
and lack of confidence in their services, this was reported to be becoming less common in
Botswana.

Marjolein et al (2014) revealed come of the barriers are luck of Training, support needs and tools
these include the improvement of training and support for informal and professional carers
appears as a recurrent recommendation to lessen the burden of care. Identified areas of training
include: basic hygiene, clinical aspects of care, symptom management (including fear of opioid
addiction), prevention of patient to carer infection, care for children, counselling for patients and
families, home based care, information provision, and psychiatric and bereavement care.

2.3 The practice of health care professional towards the management of patients on
palliative care
In a study done in Ethiopia showed that the majority (74.8%) of respondents had a poor practice which is
similar to the result from New Heaven (Gott M, et al 2014). Poor palliative care practice in this result
could be related with respondents’ poor knowledge on the aspect of PC practice and it might also be due
to the fact that study subjects had doubts on professionalism which affects the PC practice habit (Kassa H,
et al, 2014). Nearly one fourth of participated nurses did not inform terminally ill patients about their
diagnosis which was lower compared to studies done in Lebanon, United States, England and Addis
Ababa and lower from study in Norway, since nowadays diagnosis of patients used to be expressed by
nurses may not challenge to disclose to patients in the case of Ethiopia.
The study revealed that most of patients are not actively involved in decision-making about their care,
largely due to a lack of patient education and understaffing, which hinders effective communication, the
lack of appropriate space and privacy was reported in many studies, furthermore, not having a private
room for discussion when delivering bad news and discussing the disease and the changes that would
result from it was seen as a significant barrier that made both patients and health providers Uncomfortable
(Evelyne et al., 2023).

Tapera et al., (2020) reported that health workers had received adequate training to provide treatment and
palliative care of cervical cancer patients. Seventy-six (76%) of health workers reported having guidelines
for the treatment and palliation of cervical cancer patients in their health facilities, only one health worker
referred patients for palliative care at Island Hospice or other service providers or to a palliative care
specialist three months prior to the survey furthermore, less than half of health workers reported that most
patients with cervical cancer were accessing treatment and palliative care and this was based on their
professional experiences with cervical cancer patients/survivors.

Participants working in general hospitals and primary health-care units argued that the country’s health
system is skewed in favor of preventable and curable diseases, resulting in palliative care being a low
priority among policymakers, health professionals, and the community (Clark D et al., 2019). It was noted
that: “In general, the top leaders did not prioritize palliative care and non-communicable conditions, the
government’s focus is on communicable diseases, the professionals are motivated to follow the tone set
by the government directions, palliative care remains a neglected area”(Nicola et al 2022)

The study done in Nigeria among 349 participants revealed that majority of the participants, 292 (84.1%)
initiated palliative care discussion during patients’ diagnosis while 290 (83.6%) informed terminally ill
patients about their diagnosis. Medical 263 (84.6%) and cultural 94 (30.2%) factors were respectively the
most and least considered factors by participants when dealing with terminally ill patients, conditions,
regarding psychological issues, 22 (6.3%) participants hid the truth from the patients, 301 (86.5%)
preferred to counsel them while 196 (56.3%) provided emotional support to the patients.
 CHAPTER THREE

RESEARCH METHODOLOGY

3.0. Introduction

This chapter explains the various methods that was used and followed while conducting the study. This
include the research design, the study area, the study population, the sampling criteria and the selection of
the respondent, sample size, selection and sampling procedure, limitation of the study and data
collection, instrument used and the quality control and how data was analyzed

3.1. Study type

The study was cross sectional survey that employed both qualitative and quantitative analysis which was
based on random sampling method of selecting the respondents

3.2. Study area

This study will be carried out in juba teaching hospital, Juba Teaching
Hospital is the only national referral hospital in the whole country of South
Sudan and is located in the capital city of Juba, Central Equatorial State. With
an estimated population of 10.46 million (based on annual population growth
of 3% from a population census conducted in 2018) and lack of proper
functioning primary healthcare facilities upcountry, many South Sudanese
have nowhere to go but to this national referral hospital. Some military and
police personnel also share these limited facilities with civilians

3.3. Targeted population

Target population is the entire population in which a researcher is interested and to which the study
results was generalized. This study was conducted among pregnant mothers at juba teaching hospital
without consideration of the level of their education or age.

3.4. Sample size

The total sample size comprise of 50 respondents during the study practice. However all the all patients
who was allowed to participant in the study
3.5. Sampling method

Sampling is defined as the process of selecting a portion of the population, so that conclusions/deductions
about the entire population can be made (Polit& Beck, 2012). The researcher will used stratified random
sampling to select the elements/respondents.

3.6. Study variables

Dependent Variables Independent variables

knowledge of health care professional towards Knowledge
the management of patients on palliative care in  Define palliative
ICU at Juba teaching hospital  When to start palliative care

barriers to implementation of palliative

 lack of knowledge
practice of health care professional
 how frequent do they care for
patient at end of life

3.7. Data collection tool

A questionnaire is a document that is used to gather self-report data through self-administration of

questions (Polit& Beck 2012). In addition to being a primary means of data collection in quantitative
studies as compared to other means of data collection.

Structural questionnaires was used as a research tool for the data collection, this will based on the nature
of data that needed to be collected.

3.8. Data processing and analysis

The data collected during the study was processed and analyzed by excel quantitatively inform of tables,
figures, charts and graph (pie and bar graphs) for ease of presentation and interpretation. Quantitative data
was analyzed for the lowest and highest figures and their ranges, mean and values, variants and standard
deviations where applicable. The analyzed data was presented using graph, pie-charts and tables

3.9. Quality control

There was close supervision of research assistant thoroughly checking of data was done before leaving
the research assistant, the research assistant was trained on how to con duct the study by the researcher
and the questionnaires was thoroughly cross check before leaving the respondent to avoid biasness and
therefore. All information was treated confidentially. Data adjustment will be done basing on the respond
during pre-testing and the researcher ensure that the correct data is obtained and recorded

3.10. Study limitations

The study was limited by inadequate of funds which was solved by using the variable resource and which
kept expenditure within the affordable limits and by mobilizing fun before collecting data.

There was limited books in the library for reference but the researcher collected literature from internet
and from public library.

Time allocation for conducting the study was limited hence; it competed with the daily activities.

3.11. Dissemination of the result

The researcher printed three copies of this work, one will be given to the administration of juba teaching
hospital, one copy will be also given to juba collage of nursing and midwifery the other one will be also
sent to the ministry and also the researcher will keep one for himself.

3.12. Ethical consideration

Ethical clearance letter will be obtained from the administration of juba collage of nursing and midwifery
and was taken to the Administration of juba teaching hospital where it was approved and the respondents
were allowed to consent on an informed choice.

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Wubayehu4: Nurses practice towards palliative care in Shire Endasilasie health facilities,
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sub-Saharan Africa: a systematic review of the qualitative literature 2017, 10:6
http://www.biomedcentral.com/1472-684X/10/6
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APPENDIX II: CONSENT FORM

I SUSAN JURU ELISAMA a final year student at Juba collage of nursing and midwifery, I am
currently pursuing diploma in registered nursing. I am conducting a study on the “knowledge of
health care professional towards the management of patients on palliative care in ICU at
Juba teaching hospital”. The study is for academic purpose only.
You are kindly requested to spare a few minutes to answer questions regarding this topic. The
information you will give is very valuable and will be treated with maximum confidentiality.
There is no risk associated to the study and no names will be needed but instead, study numbers
will be used. Please be informed that participation is voluntary and that you are free to object to
the study or withdraw for it at any point in time if you wish so.

I have receive complete explanation about this research from the researcher and willingly accept
to take part in the study

Thump print/signature of the respondent ___________________Date___________________

APPENDIX II: STUDY QUESTIONNAIRES

This paper consist of four parts A, B, C and D, you are required to answer all questions
INSTRUCTION: circle the most correct answer of your choice (©)
SECTION A: Biographical information
A. How old are you?
A. 24-29years
B. 30-39years
C. 40-45years
B. What is your marital status?
A. Single
B. Married
C. Widow
D. Divorced.
C. What is your religion?
A. Christianity
B. Islamic
D. What is your profession?
A. Nurse
B. Midwife
C. Clinical officer
D. Doctor
E. Others
E. What is your educational level?
A. Certificate
B. Diploma
C. Degree
D. PhD
F. Which language do you speak?
A. English
B. Arabic

Both English and Arabic

SECTION B: Questions knowledge of health care professional towards the management of
patients on palliative care in ICU at Juba teaching hospital
7. How do you define palliative care?
A. Is the active total care of patients whose disease is not responsive to curative treatment
B. General care of sick patients
C. Care of patient whose sickness is terminal
D. Normal care that a patient get in the hospital
8. When do you this palliative care is appropriate?
A. only appropriate where there is evidence of patient deterioration
B. when the patient have shown signs of no life expectancy
C. all the time when the patient is admitted
D. in cancer ward only
9. What are the main aim of providing palliative care?
A. palliative care focuses on the relief and prevention of suffering
B. to provide recovery and prevention of disability
C. to prolong death
10. Do you have any training or educational practice on palliative care?
A. Yes
B. No
If yes, from where?
A. From training
B. From school
C. From radio
SECTION C: Question related to barriers to implementation of palliative care among
health care professional towards the management of patients on palliative care in ICU at
Juba teaching hospital
11. What are the cultural view on belief about palliative care?
A. it is a taboo to talk and plan about death
B. only religious leaders talks or prepare individual at the end of life
C. patients should be kept alive as long as possible using medical means
D. Patient should be care for until death and that involve treating discomfort
12. When the patients nears death, a nurse or a care giver should withdraw from participation in
care giving
A. Agree
B. Disagree
 C. Strongly agree
D. Strongly disagree
13. Do you think it is important to have community support during end of life care?
A. Yes
B. No
If no why?
A. Social and personal disruption
B. Increase more burden to the family of the patients
14. A nurse providing palliative care should extended to the patients family and friend during his
end of life?
A. Agree
B. Strongly agree
C. Disagree
D. Strongly disagree
SCETION C: Questions related to practice of health care professional towards the
management of patients on palliative care in ICU at Juba teaching hospital
15. as a medical personnel taking care of patient on palliative care, what the most appropriate
strategies?
A. Avoid unnecessary discomfort for example constant management of pain
B. avoid unnecessary investigations if it doesn’t contribute in the improvement of patients
condition
C. inform the patient about his/her condition
D. avoid telling the patient his/her condition to avoid anxiety
16. Do you involved the patient in decision making during his/her care plan?
A. yes
B. no
If no why?
A. it creates anxiety
B. decision is solely made by the doctor
C. if the patient is helpless
D. Not necessary
17. Does the hospital or the facility you practice in provide you with training about palliative
care?
A. Yes
B. No
18. Do you have the department that deal with palliative care in your facility?
A. Yes
B. No
When do you initiate palliative care when you identify the need?
A. When the condition of the patient is terminal
B. When the patient is suffering from chronic disease
C. For all patients who is seeking medical attention

Thanks for your participation

THE END