PREVALENCE AND FACTORS ASSOCIATED WITH PSYCHOLOGICAL ISSUES,

QUALITY OF LIFE AND COPING STRATEGIES AMONG PALLIATIVE CARE

PRACTITIONERS AT HAU

INSTITUTE OF HOSPICE AND PALLIATIVE CARE IN

AFRICA

Student name: Harriet Nalubega

Student No: 2022/HD07/244U

Registration No: 2200700244

Superviser: PROFFESSOR WILSON ACUDA

A Research proposal submitted to the school of medicine for partial fulfilment of

the requirements for the award of a Master’s degree of Science in Palliative at
Institute of Hospice and Palliative Care in Africa.
Declaration
I ……………………………………………………………………Declare that all
the contents in this proposal is my own work, obtained after my research and has
never been submitted for any academic or commercial purposes. Any work that
does not belong to me has been duly referenced.

Signature: ……………………………………………………

Date: …………………………………….

SUPERVISOR
NAME……………………………………………………………………………

Signature: ……………………………………………

Date: …………………………………….

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Definition of key terms
Palliative care: - is an approach that improves the quality of life of patients and their families facing
the problems associated with life-threatening illness, through the prevention and relief of suffering
by means of early identification and impeccable assessment and treatment of pain and other
problems, physical, psychosocial and spiritual (WHO, 2020)."

Prevalence: The number of existing cases of a disease in a population at a given time.

Associated factors: - these are factors/outcomes linked to the psychological issues

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ABBREVIATIONS AND ACRONYMS
AIDS- Acquired Immune Deficiency Syndrome

EAPs-Employee Assistance Programs

HAU- Hospice Africa Uganda

HAUREC- Hospice Africa Uganda Research Ethics committee

HIV – Human Immune Virus

IHPCA-Institute of Hospice and Palliative Care in Africa

IRB-Internal Research Board.

MHM- Mobile Hospice Mbarara

LHH-Little Hospice Hoima

NIH-National Institute on Aging

IAHPC-- International Association for Hospice and Palliative Care

PC-Palliative Care

SOMREC -School of Medicine Research Ethics Committee

WHO- World Health Organization

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Table of Contents
Declaration ....................................................................................................................................................... i
Definition of key terms.................................................................................................................................... ii
ABBREVIATIONS AND ACRONYMS ................................................................................................................. iii
Chapter one:.................................................................................................................................................... 1
Introduction ................................................................................................................................................ 1
PROBLEM STATEMENT ................................................................................................................................ 2
JUSTIFICATION............................................................................................................................................. 3
Research questions ..................................................................................................................................... 3
Aims............................................................................................................................................................. 3
Specific Objectives ...................................................................................................................................... 3
conceptual frame work ............................................................................................................................... 4
Dependent variables (Out comes) .......................................................................................................... 4
Chapter 2: ........................................................................................................................................................ 5
Literature review ......................................................................................................................................... 5
The prevalence of psychological issues among Palliative Care practitioners ............................................. 5
The factors associated with psychological issues faced by palliative care practitioners ............................ 6
Coping Strategies for managing psychological problems by palliative care practitioners. ........................ 8
CHAPTER THREE ............................................................................................................................................ 12
RESEARCH METHODOLOGY ...................................................................................................................... 12
Introduction .............................................................................................................................................. 12
Study Design.............................................................................................................................................. 12
Study Area ................................................................................................................................................. 12
Study population ....................................................................................................................................... 13
Sample size determination........................................................................................................................ 13
Sampling Methods .................................................................................................................................... 14
Inclusion criteria ........................................................................................................................................ 14
Exclusion criteria ....................................................................................................................................... 14
Data collection .......................................................................................................................................... 14
Validity ...................................................................................................................................................... 14
Data Analysis and Management ............................................................................................................... 14
Ethical Considerations ............................................................................................................................... 15
Informed Consent: .................................................................................................................................... 15
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 Privacy: ...................................................................................................................................................... 15
Confidentiality: .......................................................................................................................................... 15
Dissemination Plan .................................................................................................................................... 15
Study Limitations....................................................................................................................................... 15
References..................................................................................................................................................... 16
5.0. Appendices ............................................................................................................................................. 18
5.1. Appendix I: Work Plan Table 2 Activity time frame ........................................................................... 18
5.2. Appendix II: Budget and Budget Justification .................................................................................... 19
5.3. Appendix III: Consent Form (English) ................................................................................................. 20
5.5. Appendix V: Questionnaire (English) ................................................................................................. 24

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Chapter one:
Introduction
Palliative care improves the quality of life of patients and that of their families who are facing
challenges associated with life-threatening illness, whether physical, psychological, social or
spiritual (WHO 2020 Palliative care Key Facts).

Palliative care is intended for at patients with life limiting illnesses, such as heart failure, chronic
obstructive pulmonary disease, cancer, HIV/AIDS dementia, Parkinson's disease, and many others
and can be helpful at any stage of illness when provided as soon as a person is diagnosed to improve
their quality of life by controlling their pain and other symptoms also understanding and respecting
their preferences of medical treatment .This is done by a multidisciplinary team made up of different
professionals like doctors, nurses, social workers, nutritionists ,religious leaders, traditional
herbalists and others depending on their needs to provide medical, social, emotional, and practical
support working together with the patient and family to relieve the patients total pain (NIH National
Institute on Aging 2021) What Are Palliative Care and Hospice Care?

According to IAHPC 2023, 56.8 million people are estimated to be in need of palliative care each
year with 25.7 million near the end of life. Only 7 million patients receive palliative care where the
majority are adults with 76% and 7% are hchildren living in low- and middle-income countries.

The World Health Assembly (WHA67.19,2014) recognized that "palliative care is an ethical
responsibility of health systems, and that it is the ethical duty of health care professionals to alleviate
pain and suffering, whether physical, psychosocial or spiritual, irrespective of whether the disease
or condition can be cured, and that end-of-life care for individuals is among the critical components
of palliative care.

World Health Organization legitimately recognizes palliative care as a specialty with the purpose
of palliative care medicine relieving suffering and improving patients quality of life in patients with
life limiting illness with the medical care concentrating at a medical diagnosis while palliative
care focusing on providing holistic care allowing the patient to die with dignity .This is more helpful
when palliative care is introduced early throughout the course the illness (Christy Nelson 2023).

Patient and their families feel free to share their ideas, concerns and feelings due the conducive at
mosphere and the therapeutic communication offered by palliative care providers which helps to
improve their psychological, emotional well-being, self-esteem, disease adjustment, social

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functioning, interpersonal relationships which empowers them to find meaning in life (Sheng-Yu
Fan, I-Mei Lin, Jyh-Gang Hsieh, Chih-Jung Chang 2017).

Not all Palliative care provider get emotional attachment to patients and care givers. This happens
to some of them and this emotional toll exposes them to burnout due secondary trauma and
emotional exhaustion of working with death and dying daily in Hospices, Hospitals and homes to
patients and their families with cancer, HIV/AIDS and other diagnoses depending on their needs to
offer holistic care which leads to depersonalization of patients hence affecting patient care (Hussain
A, F 2021). While other Palliative care health care providers see care as rewarding and derive
meaning-in-life from providing this care and they experience personal growth as a result of caring
for terminally ill patients (Dijxhoorn Q Anne-Floor, Brom Linda, Yvette M van der Linden et al
2021).

According to (Sovold. L.E 2021). The world health Organization estimates a short fall of 18 million
health workers by 2030 mostly in low- and lower-middle income countries due to exposure to
several stress issues with in their work that may affect their physical, mental and emotional
wellbeing negatively which impacts the quality-of-care delivery. Hence the need to consider the
challenges experienced while they are performing their duties although other palliative care
professionals find it satisfying and rewarding which is very important also in the healing process
(N Sanso et al 2015).

PROBLEM STATEMENT
Palliative care providers encounter emotional toll and suffering as a result of engaging in patient’s
distresses, death, dying, grief, bereavement and making difficult ethical decisions (Moreno-Milan
B, et al 2021). According to the studies done this puts them at risk of burnout, exhaustion,
detachment and effects on personal life resulting in total pain also causing other problems like
absenteeism, reduced productivity, reduced self-esteem, increased medical errors dissatisfaction,
reduced self-care if not attended to on time to help them cope (Eisa Yazeed Ghazwani 2022). There
has been limited attention given and information about their issues which has contributed to poor
mental health hence putting them at risk of burnout and most likely contributes to staff exiting
palliative care work. This is a serious issue as the specialty attempts to attract more new staff to
meet the increasing need for compassionate Palliative care (Robin R.W, Stephen E. Asche, et al
2013).

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JUSTIFICATION
Palliative care workers emotional toll has a huge impact on the quality of care they deliver to
patients and their personal life due to fear of getting emotional attachment. This also can result in
psychological distresses like burnout causing relationship break down, addictions and suicidal
tendences. Attention to their wellbeing is vital in improving the quality of patient care which leads
to family and patient satisfaction. Also, intervention and support at work places can reduce turnover
rates. Work places are able to maintain work force hence becoming less costly for example when
hiring workers.

There is limited research in this area, and it is of inadequate quality to establish the effectiveness
of psychosocial interventions to improve the psychological wellbeing of the palliative care
workforce. There is an urgent need for more rigorous research to identify how best to support all
health professionals providing palliative care

Training in resilience-building strategies and training programs that help palliative care providers
to cope with the emotional demands of their work, making them more easy and able to handle
difficult situations. This can help to reduced stigma and mental health cases among palliative care
professionals and encouraging others to seek for support when needed.

Research questions
What is the prevalence, factors associated with psychological issues, impact on the quality and
coping strategies for palliative care providers?
Aims
To explore the prevalence, factors associated with psychological issues, impact on the quality and
coping strategies for palliative care providers?
Specific Objectives
• To find out the prevalence of psychological issues among Palliative Care providers at HAU
• To identify the factors associated with psychological issues faced by palliative care
providers at HAU
• To find out how they cope with the psychological problems at HAU
• To find out the impact on their quality of life.

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 conceptual frame work

Dependent variables (Out comes)

Independent variables Impact on the quality of life of palliative
social demographic factors care practitioners
age loss of empathy
gender Loss of ability to care wholly for the
religion patient
occupation absenteeism,
Education Level ineffective communication,
Income status medical errors
Marital status job abandonment to
Year of working with hospice less productivity for the organization anger
intolerance,
irritability,
interpersonal problems,
Associated factors hurt feelings,
disappointments,
workload, disconnection.
commitment, mood swings,
work environment, tearfulness, anxiety, irrational fears,
conciliation, miserable, sadness, and despair, and in
relations with patients and their some instances, even suicidal thoughts
family
Breaking bad news about
diagnosis
tough ethical decisions and daily
meeting patients' distress, dying,
and death,

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Chapter 2:

Literature review
The prevalence of psychological issues among Palliative Care practitioners
The prevalence of burnout in palliative care professionals is estimated at 17% due to repetitive
exposure to the death of patients with whom they may have created relationships, Involvement in
emotional conflicts with people living with a life-limiting illness and their families. Absorption of
the anger, grief, and despair expressed by people living with a life-limiting illness, their care givers
and Challenges to one’s personal beliefs, myths about the medical network, teamwork, death, and
dying contributes to the development of job stress. This results in poor quality patient care, physical
symptoms, psychiatric disorders and burnout among Palliative care health professionals (Palliative
Care Australia 2018).

Posttraumatic stress disorder symptoms are prevalent in palliative care providers with about 42%
positives and 33% indicating probable posttraumatic stress disorder diagnosis and Professionals
prone to avoidant coping and those with more rigid negative thought processes more likely to be at
higher risk for posttraumatic stress disorder symptoms. (Sean O’Mahony, James Gerhart, Johanna
Grosse, Ira Abrams and Mitchell M Levy 2016).

Palliative care providers most times are exposed to hard situations, death, and dying feelings in their
daily practice and other work stressors which favour burnout development. Therefore, it is of great
importance to analyse the prevalence in palliative care providers and estimate its prevalence. The
meta-analytical estimations of prevalence of emotional, exhaustion, depersonalization, and low
personal accomplishment in palliative care providers are between 24% and 30%, indicating an
important part of them being affected by the burnout syndrome. The most affected burnout
dimension is depersonalization (Jose Luis Gómez-Urquiza, Luis Albendín-García, Almudena
Velando-Soriano, Elena Ortega-Campos, Lucía Ramírez-Baena, María Jose Membrive-Jiménez,
María Jose Membrive-Jiménez and Nora Suleiman-Martos 2020).

The Maslach Burnout Inventory shows a prevalence of burnout of 17.3% among health
professionals. Personal Accomplishment the sub-scale from the Maslach Burnout Inventory that
has the highest prevalence (19.5%). Nurses have the highest levels of Emotional Exhaustion
(19.5%) and Depersonalization (8.2%), and physicians having lower levels of Personal
Accomplishment (41.2%). The prevalence of burnout also is higher in social workers also with
(27%) and the palliative care mode of care with the highest prevalence of burnout was home care

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(19.6%). (Vitor Parola, Adriana Coelho, Daniela Filipa Batista Cardoso, Anna Sandgren, João Luís
Alves Apóstolo 2017)

The factors associated with psychological issues faced by palliative care practitioners
Palliative care is a complex and demanding area of work for health professionals. Some of the
demands and stressors specific to palliative care include: Breaking bad news about diagnosis or
prognosis to a person living with a life-limiting illness, their families (Palliative Care Australia
2018).

Palliative care Healthcare professionals are vulnerable, because of the nature of their work that is
characterized by high-risk decisions, ethical dilemmas dealing with the public, and expectations of
compassion and sensitivity. This results into Compassion fatigue as a result of secondary
traumatic stress experienced by providers after witnessing patients’ suffering leading to a
decreased capacity for compassion among professionals (Laura Galiana, PhD, Noemí Sanso, PhD,
RN, Inmaculada Mu noz-Martínez, RN, Gabriel Vidal-Blanco, Amparo Oliver, PhD, and Philip J.
Larkin, 2021).

The psychological well-being of the palliative care healthcare workers improves the professional's
commitment to the institution, to their work performance, and to their personal life. The main
related factors with burnout levels in palliative care providers are workload, commitment, work
environment, conciliation, and relations with patients and their family which affects them
psychologically. Although not all palliative care workers are affected by burnout but improvement
in working environment and conditions and interventions for reducing burnout or preventing it are
necessary. (Beatriz Moreno Milan,Bill Breitbart,Benjamin Herreros,Karmele Olaciregui
Dague,María Cristina Coca Pereira 2021).

The increasing need for palliative care is regularly associated with stressful and challenging
encounters for palliative care providers. Their work involves making tough ethical decisions and
daily meeting patients' distress, dying, and death, which may cause physical, psychological, social
and spiritual pain and work-related stress. Since palliative care providers daily experience
suffering and heartbreak, they are at risk of burnout if these issues are not identified and managed
on time (Ghazwani EY 2021).

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Several factors also contribute to raised up stress among palliative care providers in addition to
those mentioned which include, lack of physical safety, constant caring, moral conflicts, perceived
job security, and workplace related bullying or lack of social support. The resulting psychological
distress can lead to burnout, depression, anxiety disorders, sleeping disorders, and other illnesses,
irritability, headaches which increases the number of mistakes at work, reduced quality care and
safety of care thus favoring increased sick leaves or abandonment of the profession. Work related
stress can have a negative impact on health care providers' professionalism, quality of care
delivery, efficiency, and overall quality of life. Not only have these factors made it harder for
professionals to deliver compassionate care to their patients, but they have also decreased their
overall well-being. Therefore, it is critical to identify and manage these work-related risk factors
to protect the mental health and well-being of palliative care healthcare workers. (Søvold L E ·
2021) ·

When caring for the dying, compassionate qualities, are essential, However, sometimes
compassionate qualities are not always present, as a matter of fact they been strongly strained by
the current health crisis. Difficulty in compassionate care has been related to the several stressors
which affect palliative care professional like increased workload, communication difficulties,
inadequate time to deal with patients, inadequate coping with their own emotional response to
grief, exposure to death, depression, and guilt. Compassion is also linked to protective factors,
such as self-care, empathy, awareness, competency and attitudes towards death. Among these,
self-compassion has been seen as essential for providing compassionate care and maintaining
healthcare worker’s balance. Compassion can be experienced through feelings of compassion for
others, from others, and for ourselves. Self-compassion has been related to a more adaptive
psychological factor with lower levels of rumination, avoidance, better emotional validation skills,
emotional intelligence, life satisfaction, and well-being to be able to build resilience against stress
and burnout self-have a better professional quality of life (Noemí Sanso 2021).

Compassion fatigue comes from empathy imbalance which leads confusion and unclear
boundaries, diminished job performance, death anxiety which includes grief over patients’ death,
increased neglect of personal physical health needs, inability to share in suffering leading to
increased emotional isolation and poor judgement in daily duties and poor spiritual support due to
emotional disconnection often compounded to grieving .Although sometimes this is seen as a
sign of weakness and professional incompetency by some healthcare providers such as staff have
no opportunity to internalization of thoughts and feelings (Feryad A Hussain 2021).

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Palliative care providers burnout can also be stimulated by the work unit or work area. Daily
practice, the type of diseases, patients and their prognosis, and the ethical issues will vary
depending on the unit where they work for example oncology department might be different from
palliative care department. For this reason, it can be expected that the levels of burnout will be
different depending on the work unit. In the case of palliative care providers, it is a unit where
people have a terminal prognosis, where bad news communication is more common and where the
contact with family and patients is more persistent and closer. Therefore, it is important to
investigate palliative care providers burnout by improving in working environment, conditions
and interventions for reducing burnout or preventing it are necessary. (Jose Luis Gómez-
Urquiza, Luis Albendín-García, Almudena Velando-Soriano, Elena Ortega-Campos, Lucía
Ramírez-Baena, María Jose Membrive-Jiménez, Nora Suleiman-Martos 2020).

Coping Strategies for managing psychological problems by palliative care practitioners.

The provision of workforce support is an essential element of the palliative care specialty that needs
to be suitably resourced with a supportive multidisciplinary team and other resources to be use like
drugs, finances, infrastructure and many others to improve the patients and staff quality of life.
(Palliative Care Australia 2018). Palliative care professionals need to overcome the stressors that
affect them because of constantly dealing with the process of disfigurements, fungating wounds,
patients with severe pain, aggressiveness of antineoplastic treatments, physical and emotional frailty
of patients and their families on top of making tough ethical decisions and daily meeting patients'
distress, dying, and death( Naira Agostini Rodrigues dos Santos , Suelen Veras Gomes , Clarice
Maria de Araujo Rodrigues , Juliano dos Santos , Joanir Pereira Passos 2016).

Regardless of the stress faced by palliative care providers, they need to have personal and
organizational coping strategies. These include doing things proactively, taking care of oneself,
Self-transformation coping or adaptation, experiencing the deep meaning of their work through
talking with coworkers, exercise, self-assessment techniques, Gaining of effective time
management skills, Setting of limits and boundaries, healthy personal habits such as adhering to
healthy nutrition, getting restful sleep, and engaging in physical activity; Engaging in recreational,
non-work-related activities, Attending continuing education opportunities such as attending
conferences and workshops, reading books and journals, trainings, monthly reflective practices,
team interaction, professional motivation and family .The staff also needs to feel valued and their
work appreciated by their supervisors, all these can help to develop self-awareness skills, emotional
intelligence, resilience and ego-strengthening, in turn improving related skills for managing

8
practical and emotional challenges raised by the process of providing care to others(Sapeta Paula,
Centeno Carlos, et al 2022).

Work places need to think about Employee Assistance Programs (EAPs) and put them into practice
so they can help palliative care clinicians receive support for their mental health needs at no
additional cost to the employee as motivation. The personalized service includes confidential
therapy, psychotherapy, wellness exercises, medication management, care guides and digital tools
like computers, phones to help clinicians manage their mental health. Frequent check-ins can also
help lessen symptoms of burnout, addressing concerns sooner rather than later. sometimes they need
a change of scope to help them regain their love of the profession by Just changing the role around
a little bit to allow them get a fresh start(swapping) (Kristin Easterling 2023).

Emotional detachment is also a necessary part of palliative care provision referred to as curtain of
protection to hide palliative care workers emotions and grief allowing them to take on their duties
and remain professional but this depends on age, death experience, life experience, clinical specialty
and personal attitude all impact on the onset of death anxiety. Younger palliative care providers are
more likely to get stronger fear of death and more negative attitudes towards end-of-life patient care
consistently due to lack of personal experience and professional exposure (Feryad A Hussain 2021).
Impact of psychological issues on palliative care practitioners’ quality of life.

Compassionate care offered by palliative care professionals is of the utmost importance to the
patients, their families, and even to their own professional well-being. Palliative care professionals
have been subjected to greater pressures stemming from their work environment, organizational
standpoint, and emotional sense of view. compassionate care is a personal experience that is based
on a quality relationship, takes into account that the person providing care also connects with the
other’s necessities and the need to preserve the issue’s integrity while acknowledging their suffering
and vulnerability also includes the ability to emotionally connect with the patient and different
interpersonal skills. This makes care with/from compassion a key component to the achievement of
high-quality care (Adrià Campos, Arnal, Laura Galiana, Javier Sánchez-Ruiz andNoemí Sansó
2023).

However, Compassionate care exposes them to burnout as “a result of frustration, powerlessness,

and inability to achieve work goals resulting in Compassion fatigue from a traumatic, interpersonal
experience with a patient or the patient’s family. Both compassion fatigue and burnout lead to a loss
of empathy and ability to care wholly for the patient. Early interventions can change this process
before it becomes more complex with time so that they are able to go on with the caring for

9
traumatized and suffering patients and their families. Leaders need to provide support and self-care
strategies which can enable the palliative care providers to continue practicing in a way that
demonstrates care and empathy also focusing on prevention by having more research done in this
area (Christy Morton Secor 2015).

The palliative care providers Quality of life involves; living conditions, professional situation,
salary and subjective dimensions like well-being, family, love and personal fulfillment. All this can
be affected by Burnout leading to absenteeism, ineffective communication, medical errors and job
abandonment among palliative care providers. Interventions are needed to promote better coping
mechanisms when dealing with stress among palliative care providers. (Gonçalves, F., Gaudêncio,
M. 2023).

When Palliative care providers becomes burned out, their patients and the organization suffer in a
way that absenteeism increases and others can also decide to leave the profession altogether, leaving
fewer clinicians to care for patients and increasing the workload for those who stay hence affecting
the continuity and quality of care for patients and families leading to less productivity for the
organization and affecting the organizational history (Kristin Easterling| October 17, 2023).

Palliative care providers with compassion fatigue tend to detach from patients and care givers
because of the sympathy and empathy they feel. Sympathy is “I care about your suffering,” empathy
is “I feel your suffering,” and compassion is “I want to relieve your suffering.” they become more
tasked- and less emotion-focused, and may increasingly pull away from others, becoming socially
isolated. They also get physical and emotional exhaustion which affect s their thinking, feeling, and
behavior in their day-to-day functioning. Their emotions are also affected negatively, such as getting
angry, annoyance, intolerance, irritability, skepticism, cynicism, embitterment, and resentfulness
often leading to interpersonal problems, including difficulties getting along with others and
problems with intimacy, resulting in hurt feelings, disappointments, and disconnection. There may
have mood swings, tearfulness, anxiety, irrational fears, miserable, sadness, and despair, and in
some instances, even suicidal thoughts or gestures (DL Stoewen 2020).

Compassion fatigue carries along an increase in the difficulty to providing care and that it can be
seen in changes throughout different areas such as the social, physical, emotional, spiritual, and
intellectual. Secondary traumatic stress and exhaustion as a consequence of compassion fatigue
makes palliative care Professionals feel drained of energy, indifferent toward their patients,
uninterested, a decrease in work performance, an increase in thoughts about resigning. However,
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there is at least one positive aspect of compassion satisfaction sometimes where they feel
gratification from providing care for others; thus, it can be conceived as the degree of joy that results
from the experience of helping others while in healthcare. (Kaur A, Sharma MP, Chaturvedi SK.
2018).

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CHAPTER THREE
RESEARCH METHODOLOGY
Introduction
The chapter describes the methods that will be used in conducting the study. It presents the

research design, study area and population, study sample, data collection, data analysis, data

sources and ethical consideration of the study

Study Design
The research will utilize a cross-sectional survey design to investigate the prevalence, factors
associated with psychological issues, impact on the quality and coping strategies for palliative care
providers at HAU. This study will have mixed methods of quantitative and qualitative study design
for a comprehensive assessment f Palliative care practitioners at HAU.

Study Area
Hospice Africa Uganda (HAU), is a non-profit organization founded in 1993 with the vision of
Palliative Care reaching all in need in Africa. And mission to provide a holistic and culturally
sensitive palliative care services.

Uganda is the clinical headquarters of Hospice Africa Uganda operation in Africa, where morphine
is produced, treat patients and run education programs for healthcare workers in other African
countries.

There are three sites in Uganda: the headquarters in Kampala and two smaller sites in Hoima and
Mbarara. In each of these sites, Hospice has an extremely dedicated team of doctors, nurses, drivers,
pharmacists and administrative staff, and volunteers all driven to provide the best care available for
our patients. The teams run daily drop-in clinics, home visits, hospital daycare and outreach
programs.

In 1995, the Hospice Africa team were invited to Mbarara to teach palliative care to medical students
at the Mbarara University of Science and Technology. It was apparent that this rural part of Uganda
had a need for palliative care services, and the momentum began to build. First, the team were
kindly donated a Land Rover, driver, and medical supplies, which was enough to get things started.
After this came a four- year process of obtaining a large grant which allowed the service to flourish.

12
Soon the team in Mbarara had a newly refurbished clinic, funding, and the supplies needed to take
on many more patients. They were then joined by more doctors and nurses who helped extend the
service and later set up outreach and roadside clinics which are so crucial in more rural areas.

The second clinical branch of Hospice Africa was opened in 1998 in Hoima, a rural and sadly
neglected town 200km north of Kampala. There was much need for a service to function in this
deprived and war-torn part of the country as very little medicine was available to patients suffering
from HIV and cancer.

The clinic started from very small premises but eventually received the funding and support it
needed to set up a larger centre of its own. Hoima now has access to the full palliative care service
of Hospice Africa thanks to our friends, staff, and supporters.

The service in Uganda is now found in 90% of the districts, headed by a registered prescriber trained
at HAU. Uganda was the first country in the world to recognise nurse prescribers, following a year’s
training to Diploma level in palliative care. This was essential because of the shortage of doctors in
Uganda and other African countries. We work closely with the Cancer programmes at the Uganda
Cancer Institute and hospitals.

Study population
The study population will consist of healthcare workers employed at HAU across the 3 sites in
Uganda with informed consent. Specifically, the population will include all palliative care
practitioners working at the facilities consisting of doctors, nurses, pharmacists, dispensers, social
workers, clinical officers and volunteers. These health care practitioners will serve as the primary
focus of the study, providing insights into the prevalence of psychological issues they encounter,
factors associated, impact on their quality of life and how they cope to continue offering care to
patients and their families.

Sample size determination

The sample size for the study will be determined based on the total population of health care
practitioners working at HAU. With an estimated total population of 30 healthcare workers, this

number will serve as the sample size for the study. The sample size determination follows the

guidelines provided by Krejcie and Morgan (1970) for determining sample sizes in research.

According to this method, a sample of 30 healthcare workers will be selected ensuring adequate
representation for the study objectives aiming at providing comprehensive understanding of the

13
prevalence of psychological issues they encounter, factors associated, impact on their quality of life
and how they cope

Sampling Methods
This will be a purposive sampling for qualitative and quantitative Data to Understand the prevalence
of psychological issues they encounter, factors associated, impact on their quality of life and how
they cope.

Inclusion criteria
Data will be conducted from all palliative care practitioners (Nurses, clinical officers, social
workers, volunteers and Doctors) working at HAU across the 3 sites.

They will be surveyed about factors associated with psychological issues, impact on the quality and
coping strategies for palliative care providers professional impact on their quality of life and
sociodemographic data.

Exclusion criteria
Palliative care providers who have worked at Hospice for less than 6months because they may not
have had enough experience in caring for palliative care patients.

Data collection
Qualitative Data will be collected using open ended interview guide and quantitative data will be
collected using hospital and anxiety scale or WH The selection criteria will prioritize individuals
with experiences within Palliative care delivery.

Validity
To enhance validity, the study tools, including the interview guide, will undergo pre-testing.

Data Analysis and Management

The study will employ statistical analysis software, specifically SPSS (version 24), to analyse

the collected data. A process will be followed to ensure accuracy and reliability in the

analysis. The data entered into SPSS will undergo thorough inspection to identify and rectify

any errors or inconsistencies using the Google Refine tool. Each questionnaire will be

assigned unique ID numbers for efficient organization and tracking during analysis.

Descriptive statistical analysis will be utilized to summarize the demographics of the

participants and study variables.

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Ethical Considerations
The principal investigator will seek approval at Makerere University School of Medicine Research
Ethics Committee (SOMREC)

Permission will be given by the office of the Executive Director Hospice Africa Uganda before the
process of data

Written consent and Informed consent will be obtained from all participants and confidentiality
ensured.

Informed Consent:
Prior to engaging any participants in the study, their informed consent will be obtained. The
researcher will transparently communicate the purpose, objectives, and the method of participation
Consent forms will be provided, and only individuals who will voluntarily agree to participate by
signing the consent form will be included in the study.

Privacy:
Participants selected for the study will be treated with utmost privacy and respect.

Measures will be implemented to ensure that participants independently respond to

questionnaires, free from external influence.

Confidentiality:
Access to this information will be restricted to individuals directly involved in the

research study, and personal details that could potentially identify respondents will not be

solicited, to ensure confidentiality of the participants.

Dissemination Plan
The finding of this research will be shared with the HAU 3 sites where the research was done and
the IHPCA with the participants consent.

Study Limitations.
limitations of this study will that the palliative care healthcare professionals who currently
experience symptoms of psychological issues as a result of caring for patients and their families are
more likely to be absent on leave which may affect the outcomes.

15
References
1. A. Gurib-Fakim, T. B. L. D. P. a. L. N. E., 2010. Green Gold—Success Stories Using Southern African
Plant Species. Mauritius: AAMPS Publishing.

2. Aone Mokaila, 2011. [Online]

Available at: http://www.blackherbals.com/atcNewsletter913.pdf

3. B Gerber, H. M. T. R. A. K. K. F., 2003. Nutrition and lifestyle factors on the risk of developing
breast cancer. Breast cancer research and treatment, pp. 265-275.

4. David Laughren, A. S. P. N. a. C. D., 2020. Taking Herbal Medicines as Part of Your Cancer Care.
[Online]
Available at: www.uhnpatienteducation.ca

5. dictionary, W., 2020. merriam webster. [Online]

Available at: https://www.merriam-webster.com/dictionary/herbal%20medicine

6. F. Bray, J. F. I. S. R. L. S. L. A. T., 2018. Global cancer statistics 2018 GLOBOCAN estimates of

incidence and mortality worldwide for 36 cancers in 185 countries,. A Cancer Journal for
Clinicians, pp. 394-424.

7. FawziMahomoodally, M., 2013. Traditional Medicines in Africa: An Appraisal of Ten Potent African
Medicinal Plants, Mauritius: University of Mauritius.

8. Gurib-Fakim, A., 2006. Medicinal plants: traditions of yesterday and drugs of tomorrow,.
Molecular Aspects of Medicine, p. 1–93.

9. H. Nunkoo and M. F. Mahomoodally, 2012. Ethnopharmacological survey of native remedies

commonly used against infectious diseases in the tropical island of Mauritius. Journal of
Ethnopharmacology,, p. 548–564.

10. ICD-10, 2021. ICD-10 Coding Guidelines. [Online]

Available at: http://www.outsourcestrategies.com/resources/high-risk-pregnancy-icd-10-coding-
changes-2017.html.

11. Kakudidi EK, B. Z. R. K. J., 2000. The medicinal plants in and around Kibale National Park in
western Uganda. A Norwegian Journal of Botany, pp. 109-124.

12. Kamatenesi Mugisha M, B. Z. R., 2002. Ethnobotanical Survey methods to monitor and Asses the
sustainable Harvesting of Medicinal plants in Uganda, London: KEW.

13. Kamatenesi Mugisha M, B. Z. R., 2005. Ethnobotanical use of Rytigymia(Nyakibazi) in Bwindi

impenetrable Natioonal Parks, SW Uganda. A Norweigian Journal of Botany, pp. 97-108.

14. Liwa, A., 2017. Internationa journal for Hypertension. [Online]

Available at: https://www.hindawi.com/journals/ijhy/2017/5692572/

15. Mahomoodally, A. G.-F. a. M. F., 2013. African flora as potential sources of medicinal plants:
towards the chemotherapy of major parasitic and other infectious diseases. Jordan Journal of
Biological Sciences, p. 77–84.

16. Mahomoodally, S. S. a. M. F., 2013. Complementary and alternative medicine use among
Mauritian women. Complementary Therapies in Clinical Practice, pp. 36-43.

16
 17. Mahomoodally, V. C. a. M. F., 2012. Herbal medicine commonly used against infectious diseases
in the tropical island of Mauritius. Journal of Herbal Medicine, pp. 113–125,.

18. NDA, 1993. National Drug Policy and Authority Act (1993) , kampala : GOU.

19. Samiya, M. a. M. S., 2008. Identification of High Risk Pregnancy by a Scoring System and its
Correlation with Perinatal Outcome., jakata: Indian J Pract Dr.

20. WHO, 2008,. Fact sheetN∘134,. [Online]

Available at: http://www.who.int/mediacentre/factsheets/2003/fs134/en/.

21. WHO, 2014. World Cancer Report,, Geneva: WHO.

22. WHO, 2014. WHO traditional medicine strategy, Geneve: WHO.

23. WHO, 2019. WHO global report on traditional and complementary medicine , Geneva: WHO.

24. WHO, 2019. WHO global report on traditional and complementary medicine 2019, Geneva: World
Health Organization 2019.

25. WHO, 2020. Palliative Care. [Online]

Available at: https://www.who.int/news-room/fact-sheets/detail/palliative-care

17
5.0. Appendices HSA/HNH/PSF/97.6
Page 3

5.1. Appendix I: Work Plan Table 2 Activity time frame

Activities Time
Protocol
1 submission to relevant ethical Committees MAY 2024

Testing of questionnaires MAY-JUNE 2024

Data collection and daily field data management MAY-JUNE 2024
Data entry JUNE 2024
Data analysis and report/thesis writing JUNE-JULY2021
Dissemination JULY 2024

18
 HSA/HNH/PSF/97.6
Page 3

5.2. Appendix II: Budget and Budget Justification

Item Item(s) qty Rate(UGX) Total

No. cost (
UGX)
1 National 1 200,000 200,000
Council of Science and
Technology fee

2 IRB fees to relevant boards 1 500,000 500,000

3 Printing and photocopying 6 500 300,000
questionnaires
4 Piloting questionnaires 4 30,000 120,000
6 Refreshments for study 3 5,000 1,500,00
participants 0 0
7 Facilitation for data 3 150,000 450,000
collection
8 facilitation for data entry 2 200,000 400,000
9 Facilitation for data analysis 1 1,000,000 1,000,00
0
1 Writing and Printing report 1 100,000 100,000
0
1 Dissemination 1 300,000 300,000
1
Grand Total 3,420,000

19
 HSA/HNH/PSF/97.6
5.3. Appendix III: Consent Form (English) Page 3

RESEARCH ETHICS COMMITTEE

P. O. Box 7757, Kampala, Uganda
Tel 256 392766867.
Email: infoug@hospice-africa.org
INFORMED CONSENT FORM

STUDY TITLE: PREVALENCE AND FACTORS ASSOCIATED WITH

PSYCHOLOGICAL ISSUES, QUALITY OF LIFE AND COPING STRATEGIES AMONG
PALLIATIVE CARE PRACTITIONERS AT HAU

Principal Investigator(s): Nalubega Harriet

INTRODUCTION
What you should know about this research study:
• You are being asked to join this research study.
• This consent form explains the research study and your role in the study
• Please read it carefully and take your time to decide
• You are a volunteer. You can choose not to take part and if you join, you may quit at any
time. There will be no penalty if you decide to quit the study.
Leave blank for REC office only: REC OFFICE USE ONLY:
HAUREC Stamp APPROVAL DATE:
APPROVED CONSENT IRB
VERSION NUMBER:
PI NAME:
IRB NO:

Background:
We are here to speak with and invite you to participate in a study. In this study we shall ask you about
your prevalence and factors associated with psychological issues, quality of life and coping strategies
among palliative care practitioners at Hospice Africa Uganda.
Purpose of this research:
This research aims to assess the prevalence and factors associated with psychological issues, quality of
life and coping strategies among palliative care practitioners at Hospice Africa Uganda basing on the
participants information. This research is a requirement for a Master’s degree in palliative care by the

20
faculty of medicine and the information you give may help to assess how best to support palliative care
HSA/HNH/PSF/97.6
practitioners. Page 3

Why you are being asked to participate:

You are being asked to participate in this study because you are a palliative care practitioner who has
been involved in the caring of palliative care patients. Some palliative care practitioners are faced with
secondary trauma which affects their quality of life and quality of care delivered to patients and their
families. This study will help to come up with intervention and support at work places that can reduce
turnover rates, stigma and mental illness cases.

Leave blank for REC office only: REC OFFICE USE ONLY:
HAUREC Stamp APPROVAL DATE:
APPROVED CONSENT IRB VERSION
NUMBER:
PI NAME:
IRB NO:

Procedures:
If you choose to be part of the study, we will ask you and record your personal information like
your age, marital status, the number of years worked with HAU etc.
We may then ask you to elaborate more on how palliative care work has impacted on you and the
copping strategies you use.
The interview may last for 40 minutes or less
discomforts:
We are only going to interview you, we as a research team will not have any procedures done on you, so
there is no harm participating in this study except the time you will offer us.
Benefits:
The only benefit for your participation in this study is that we will help ensure that we share the
outcomes with your managers for interventions to be done.
Incentives / rewards for participating:
There are absolutely no incentives/rewards (e.g. monetary or any form) that will be given to you
and others to participate in this study. The study is completely on a voluntary basis.

Leave blank for REC office only: REC OFFICE USE ONLY:
HAUREC Stamp APPROVAL DATE:
APPROVED CONSENT IRB VERSION
NUMBER:
PI NAME:
IRB

Protecting data confidentiality:

We will protect your privacy and no information will be disclosed. We will store your information
in locked cabinets and computers with passwords and limit who can access it.

21
Protecting subject privacy during data collection:
HSA/HNH/PSF/97.6
Page 3
We will talk to you in a private place so other people cannot hear the questions we ask you or your
answers. We’ll not tell other people why we are talking to you, and we will protect you and your
privacy.

Right to decline / withdraw:

Participation in this study is completely voluntary. If at any time you no longer want to be involved
in the study, it is your right to withdraw. You will continue to receive the same standard of care
with no penalty or loss of benefits.

What happens if you leave the study?

If at any time you no longer want to be involved in the study, it is your right to withdraw with no
penalty, and we ask you no more questions.

Who do I ask/call if I have questions or a problem?

If you have complaints or concerns about the research, you can speak to Nalubega Harriet (palliative
care Nurse) the principal investigator on Telephone +256758072288

You are also free to contact the institutional Ethical Review Committee at Makerere University with
questions, or I can call them on your behalf. Here are their contact details:

Leave blank for REC office only: REC OFFICE USE ONLY:
HAUREC Stamp APPROVAL DATE:
APPROVED CONSENT IRB VERSION
NUMBER:
PI NAME:
IRB NO:

Contact for IRC office

.…………………; Chairman HAUREC; P.O Box…... Kampala, Tel: ………………..
What does your signature (or thumbprint/mark) on this consent form mean?
Your signature on this form means
• You have been informed about this study’s purpose, procedures, possible benefits and risks
• You have been given the chance to ask questions and response given before you sign
• You have not waivered any of your human rights
• You have voluntarily made an informed decision to participate in this study

----------------------------------- --------------------------------------- -------------------

Print Name of adult participant Signature of adult participant Date

22
______________________ _______________________ ___________
-------------------------------------------- ------------------------------ ---------------------- HSA/HNH/PSF/97.6
Page 3
Print Name of person obtaining consent Signature Date

----------------------------------- -------------------------------------- -------------------

Print Name of person obtaining Thumbprint/mark Signature of witness Date

Leave blank for REC office only: REC OFFICE USE ONLY:
HAUREC Stamp APPROVAL DATE:
APPROVED CONSENT IRB VERSION
NUMBER:
PI NAME:
IRB NO:

23
 HSA/HNH/PSF/97.6
Page 3

5.5. Appendix V: Questionnaire (English)

Questionnaire of prevalence and factors associated with psychological issues, quality of life
and coping strategies among palliative care practitioners at HAU
Section 6 WHO-QOL-BREF

WHOQOL-BREF

Instructions
This assessment asks how you feel about your quality of life, health, or other areas of your life. Please
answer all the questions. If you are unsure about which response to give to a question, please choose
the one that appears most appropriate. This can often be your first response.

Social Demographics

Respondent identification (Id) number ……………………………………………...

Age ……………………… Religion ………………….

Gender ………………………. marital status …………………………

1. What is your occupation?

Nurse

Doctor

Social worker

Volunteer

2. Number of years worked with Hospice (tick appropriate)

a. 6-5

b. 5-10

24
 c. 10-15
HSA/HNH/PSF/97.6
Page 3
d. More than 15 years

3) Please keep in mind your standards, hopes, pleasures and concerns. We ask that you think about your
life in the last two weeks. For example, thinking about the last two weeks, a question might ask:

Not at all Not much Moderately A great deal Completely

How do you think about your life in the last
1 2 3 4 5
two weeks

You should circle the number that best fits how much support you got from others over the last two weeks.
So you would circle the number 4 if you got a great deal of support from others as follows.

Not at all Not much Moderately A great deal Completely

1 2 3 4 5
Do you get the kind of support from
others that you need?

You would circle number 1 if you did not get any of the support that you needed from others in the last two
weeks.

25
 HSA/HNH/PSF/97.6
Page 3

Please read each question, assess your feelings, and circle the number on the scale for
each question that gives the best answer for you.

Very poor Poor Neither Good Very good

Very poor Poor Neither poor Good Very good

nor good
How would you rate your quality of
1 2 3 4 5
life?

Neither
Very Dissatisfied satisfied nor Satisfied Very
Dissatisfied Satisfied
dissatisfied

How satisfied are you with your health? 1 2 3 4 5

The following questions ask about how much you have experienced certain things in the last two weeks.

Not at all A little A moderate Very much An extreme

amount amount
To what extent do you feel that physical 1 2 3 4 5
pain prevents you from doing what you
need to do?
How much do you need any medical 3 4 5
1 2
treatment to function in your daily life?
How much do you enjoy life? 1 2 3 4 5
To what extent do you reflect on yourself 3 4 5
1 2
after hearing patient’s issues?

Not at all A little A moderate Very much Extremely

amount
How well are you able to concentrate after
1 2 3 4 5
listening to patient’s issues?
How often do you feel worried about
1 2 3 4 5
yourself?
How healthy is your physical 3 4 5
1 2
environment?
The following questions ask about how completely you experience or were able to do certain things in the
last two weeks.

Not at all A little Moderately Mostly Completely

3 4 5
Do you have enough energy for everyday 1 2
life?
3 4 5
Are you able to appreciate your bodily 1 2
appearance?
Have you enough money to meet your 3 4 5
1 2
needs?
3 4 5
How available to you is the information 1 2
that you need in your day-to-day life?
3 4 5
To what extent do you have the
1 2
opportunity for leisure activities?

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 HSA/HNH/PSF/97.6
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HSA/HNH/PSF/97.6 Page 4

poor nor good

How well are you able to get around? 1 2 3 4 5

The following questions ask you to say how good or satisfied you have felt about various aspects of your life over
the last two weeks.

Neither
Very Dissatisfie Satisfied Very
satisfied satisfie
Dissatisfied d
nor d
dissatisfied
How satisfied are you with your sleep? 1 2 3 4 5
How satisfied are you with your ability to perform 3 4 5
1 2
your daily living activities?
3 4 5
How satisfied are you with your capacity for work? 1 2

How satisfied are you with yourself, have you been

feeling worried about yourself? 1 2 3 4 5

How satisfied are you with your personal 3 4 5

1 2
relationships?
How satisfied are you with your sex life? 1 2 3 4 5
Have you been able to share how you are feeling with 3 4 5
1 2
your family, friends, colleagues at work or supervisor?
3 4 5
1 2
How satisfied are you with their support?
How satisfied are you with your access to mental 3 4 5
1 2
health services?
Have you felt like leaving the palliative care 3 4 5
profession at any time because of the kind of work you 1 2
do?

The following question refers to how often you have felt or experienced certain things in the last two weeks.

Never Seldom Quite often Very often Always

1 2 3 4 5
How often do you have negative feelings
such as blue mood, despair, anxiety,
Fatigue
Burnout, absenteeism and depression?

Or how often you been feeling worried

about your self

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Page 3
4. Elaborate more how they impact you as a palliative care practitioner if affected (This can be positive or negative)
……………………………………………………………………………………………
……………………………………………………………………………………………….
……………………………………………………………………………………………..
………………………………………………………………………………………………….
5. What are some of the contributing factors to the psychological issues you face as you offer care to patients and their
families?
……………………………………………………………………………………………………………..
………………………………………………………………………………………………………………………….
……………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………………………..
……………………………………………………………………………………………………………………………….
6. How do you cope/manage these psychological issues that come as a result of caring for patients and their families.
……………………………………………………………………………………………………………………………………………..
…………………………………………………………………………………………………………………………………………………..
…………………………………………………………………………………………………………………………………………………..

7. Would you recommend other health care practitioner to join palliative care
a. Yes
b. No

if yes/no give reasons...................................................................................................................................................................

THANK YOU FOR YOUR PARTICIPATION.

28