Student name : Alya Ali , alyazya abdulla

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CHAPTER 1 BACKGROUND AND ORGANISATIONAL FRAMEWORK & CHAPTER 2

LITERATURE REVIEW

Introduction

Palliative care is provided to patients with irreversible, incurable, and life-threatening

illnesses, aiming to alleviate symptoms and reduce stress to improve their quality of life. Its

primary goal is to address the psychological, social, and spiritual needs of both patients and their

families. About 40 million people in all over the world require palliative care, but only 14% of

them receive it, creating a significant gap in access (World Health Organization, 2020). As stated

by the World Health Organization, palliative care is introduced as a means to enhance the quality

of life for patients with life-limiting diseases and their families (World Health Organization,

2018). In the UAE, palliative care is recognized and practiced, though it is still in its early stages.

According to Al-Shamsi (2024), more than 70% of patients in the UAE who could benefit from

palliative care are not receiving it, concentrate on the need for healthcare infrastructure's

improvement and access to these vital services (Al-Shamsi et al., 2024).

Caregivers in the UAE face numerous challenges, such as low public awareness of

palliative care and the limited availability of these services. There is a clear need for more

integrated palliative care services across the country to ensure that all patients requiring such

care have access to it. While unique challenges are associated with the delivery of palliative care

in the Middle East, the urgent need for more coordinated palliative care services was emphasized

as early as 2018.

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During the COVID-19 pandemic, Abu Dhabi's Burjeel Medical City launched its first

palliative care program. However, caregivers faced multiple challenges during the pandemic,

including the fear of infection, which impacted the quality of care provided.

Palliative care should be acknowledged as a basic human right. However, caregivers

continue to confront various challenges, such as economic, political, and cultural barriers, which

limit access to necessary care for many. As Al-Alfi (2017) notes, economic crises and political

unrest serve as significant barriers to establishing and delivering palliative care. These

limitations include insufficient legislation, lack of training, and restricted access to essential

medications. Additionally, the UAE’s cultural diversity influences perceptions of healthcare,

particularly palliative care, presenting challenges for those with terminal illnesses. Although

there are shared attitudes toward terminal illness among both Emiratis and expatriates, the

complexity of managing a diverse population has led to the creation of local palliative care

facilities. While cultural and religious values are important for raising awareness and fostering

acceptance of palliative care, misunderstandings related to Emirati family dynamics and health

beliefs hinder progress in providing culturally sensitive palliative care.

Problem Statement

the challenges and gaps in palliative care in the UAE, particularly the limited access and support

for patients and caregivers. The study explores barriers faced by both patients and caregivers in

accessing effective palliative care, especially given cultural, economic, and infrastructure

challenges within the UAE healthcare system.

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Purpose of the Study

to investigate the experiences and challenges of patients and caregivers involved in palliative

care services in the UAE. It aims to analyze referral reasons, types of care provided, and

outcomes of palliative care interventions. This includes identifying the barriers and facilitators

that impact the effectiveness and accessibility of palliative care in the UAE.

Objectives

1. To explore the challenges of palliative care among nurses in uae.

2. To evaluate the impact of cultural beliefs and practices on the acceptance and utilization

of palliative care services in the UAE.

3. To investigate the influence of public awareness on patient and caregiver engagement

with palliative care services.

Research Questions

1. What are the experiences and challenges of a new palliative care service in the UAE?

2. How does the level of public awareness about palliative care affect patient outcomes and

caregiver experiences in the UAE?

3. How does the lack of access to pain management medications impact the quality of life

for palliative care patients in the UAE?

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Definition of Terms

- Palliative care: Care that offers symptom relief, comfort, and support to individuals

living with serious illnesses, such as heart disease, cancer, or chronic respiratory diseases,

extending benefits to caregivers as well (Cleveland Clinic, 2022).

- Caregiver: A professional or family member who provides medical care and support to

patients in various settings (Tarberg et al., 2024).

- Decision-making: The process of identifying a decision, gathering information, and

making a choice (Tarberg et al., 2024).

- End-of-Life Care: Care and support provided to address a person's mental, emotional,

physical, spiritual, and practical needs before their death, whether hours, days, or months

before passing.

- Terminal illness: An incurable disease that leads to the expectation of death in the

future.

Significance to Nursing

Understanding the challenges and experiences in palliative care is crucial to nursing

practice, as nurses are essential in delivering compassionate end-of-life care. By gaining insights

into these challenges, nurses can improve their knowledge and skills, ultimately enhancing the

quality of care provided to both patients and their families.

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CHAPTER 2

LITERATURE REVIEW

Introduction:

The literature review is introduced to examine existing research on palliative care, focusing on the experiences and challenges faced

by patients, families, and caregivers, particularly within the UAE and similar cultural contexts. A literature review is a comprehensive

analysis of previously published studies, offering insights into what is already known, identifying gaps in the research, and providing a

context for the current study. It synthesizes findings from various sources to present an overview of the topic and establish a

foundation for the study's objectives.

The purpose of this literature review is to explore the global and regional challenges in palliative care, especially as they

pertain to cultural, economic, and systemic factors. It seeks to understand how life-limiting illnesses impact not only the patients but

also their caregivers, both emotionally and practically. Additionally, the review highlights critical factors affecting the implementation

of palliative care in the UAE, such as low public awareness, limited service availability, and cultural diversity. By reviewing studies

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from similar regions, the literature review aims to contextualize these issues within the unique healthcare landscape of the UAE,

offering a basis for analyzing how these challenges can be addressed to improve care outcomes and accessibility..

Reference Research question Or aim Design Findings Key strengths and limitations Recommendations and knowledge gaps
(Full of the study
reference
here/ (Give details of the (Summarise main findings and (Summarise the key strengths and limitations of
Author/s year type of study, conclusion/implications for the study and consider how the findings might
and country). instruments used, practice) help you with your potential research question)
population, sample
size, and outcome
measures)

(Hassankhani, challenges do professional Study Design: ( varroas health care workers )three of this study to explore barriers to home-based Recommends: include more people in the study.
H., (2020). caregivers face when quantitative, in- barriers to home-based palliative care: palliative care for cancer patients using in-depth gaps: in home-based palliative care for cancer
delivering home-based depth, semi- lack of instructions, family interviews and rigorous data analysis. For health patients, including misconceptions, lack of
palliative care to cancer desperation, and lack of care workers guidelines, inadequate education, regulatory
structured face-to-
patients, and how can these professionalism. frameworks, financial constraints, and patient-
challenges be resolved to face interviewp centred care research.
enhance care quality? approach.

patients, based on their purposive sampling,

personal experiences. 23 healthcare
professionals.
Outcome Measures:
barriers to home-
based palliative care
for cancer patients..

(Aneka The study explores Study Design: Results: Key Strength: Recommendations:
Paul ,2020). the challenges faced qualitative method. Caregivers expressed a need for The study employed focus group discussions and The study suggests implementing a
India by caregivers in Population: earlier involvement in palliative care, in-depth interviews to explore caregivers' comprehensive caregiver support program in
home-based Individuals who had pointing out a lack of guidance and perceptions and needs across different home-based palliative care.
palliative care, such been primary support from hospitals. socioeconomic groups in Mumbai, offering a Knowledge Gap:
caregivers to detailed understanding of their challenges and Further research is required to evaluate the long-
as fatigue, stress,
coping strategies. term effects of caregiver support programs,
and burnout, and deceased patients
Limitations: assess the effectiveness of various training
their effects on both and had received The study's generalizability is affected by limited methods, and design support programs tailored to
mental and physical support from home- participant bias, a small sample size, and the specific caregiver groups.
health. It also based palliative care absence of caregivers from earlier periods and
examines caregivers' services in Mumbai. lower socioeconomic groups.
coping mechanisms
and supportive
factors.

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Callaghan et Study Aim: Design: Cross- Results: Recommendations:
al.,(2024). The study sought to explore sectional survey. The study included 264 family Strength of the study: The study recommends recognizing and
Saudi Arabia. family caregivers' Instruments Used: caregivers, with a participation rate of High participation rate, reliable data. Limitation: involving family caregivers as vital members of
perceptions of the symptom FAMCARE-2, Arabic 94%. Of the caregivers, 55.7% were Single center, focused on cancer patients. the care team for Muslim patients with advanced
burden experienced by Questionnaire for male, and the majority (56%) were illness. It suggests providing healthcare
patients and their satisfaction Symptom Assessment between 30 and 50 years old. Nearly professional training, addressing pain
with specialized palliative (AQSA). Population: half of the caregivers' patients were management, and improving communication
care services at a tertiary Caregivers of patients receiving disease-modifying strategies.
care center in Saudi Arabia. under adult PCS for at treatments, and 38.3% had a Do-Not-
least 3 encounters. Attempt-Resuscitation (DNAR) order. Knowledge Gap:
Sample Size: 262 Caregivers were highly satisfied with There is a need to explore the influence of
(targeted). Outcome the respect for patient dignity (mean Islamic beliefs on coping mechanisms and
Measures: score = 4.6, SD = 0.6) but expressed decision-making, and to develop better pain
Satisfaction with end- lower satisfaction with practical management strategies and communication
of-life care, symptom assistance (mean score = 4.1, SD = practices in palliative care.
burden 0.9). Satisfaction was higher in
outpatient settings (mean score = 4.3,
SD = 0.7). The most severe symptoms
reported were tiredness and pain,
while shortness of breath and
nausea/vomiting were less severe.

Rafidah Study Aim: Design: Systematic Results: Key Strengths: Recommendations:

Abdullah et The study aimed to identify, review. Instruments The thematic analysis revealed three The study utilized a systematic review approach, Future research should focus on non-Muslim
al., (2020) . evaluate, and synthesize Used: Structured main themes with subthemes: employing rigorous thematic analysis of qualitative populations. Global guidelines should emphasize
UK evidence regarding the survey (no specific 1. Selflessness: Concerns about being data to uncover key themes. family involvement, particularly in decision-
experiences and preferences instruments detailed). a burden to others and caregiver Limitations: making processes. Shared decision-making
of Muslim patients and their Population: Muslim responsibilities Since all studies were conducted in Muslim- should include healthcare professionals, patients,
families concerning end-of- patients and families. 2. Ambivalence: Feelings of hope and majority countries, the findings may not be and their families.
life care in Muslim-majority Sample Size: 87 hopelessness applicable to Muslim populations residing in non-
countries. participants from 3. Strong Beliefs in Islam: Beliefs Muslim majority contexts.
qualitative studies. related to death, the afterlife, and a
Outcome Measures: closeness to Allah.
Preferences and
experiences of
Muslim patients and
families
(Winger et al., Research Question: What Design: Mixed- Results: Key Strengths: Recommendations:
2020). are the experiences of methods study. Families caring for children receiving The study utilized a thorough review process The study suggests developing and implementing
Norway families with children Instruments Used: palliative care preferred home care involving six researchers who discussed the papers, comprehensive support services tailored to the
receiving palliative care at Semi-structured over hospital care. However, they employing a systematic methodology with thematic needs of families receiving pediatric palliative
home? interviews, parental encountered considerable difficulties analysis to extract relevant themes from the care at home.
questionnaire surveys, in coordinating care at home, literature.
retrospective chart including a lack of support and access Knowledge Gap:
Study Aim: The study reviews. Population: to sufficiently skilled staff. Limitations: There is a necessity for longitudinal studies to
seeks to systematically Parents of children Additionally, families indicated a The review was restricted to English-language evaluate the long-term effects of home-based
review the experiences and with life-limiting need for financial assistance and databases and excluded Nordic language sources; pediatric palliative care. Research should also
needs of families with conditions. Sample practical help with household tasks. furthermore, most studies were qualitative with a investigate cultural beliefs, socioeconomic status,
children receiving home- Size: 9 families, 16 limited participant count. geographic factors, and the potential role of
based palliative care, parents. Outcome telehealth and technological advancements in
Measures: Parental assisting families.
highlighting the urgent
experiences and needs
requirement for improved

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pediatric palliative care.
Families often prefer home
care as it promotes a
normal family environment
and reduces stress for the
ill child.
(Al-Alfi, Aims to highlight how Design: Qualitative Findings: Key Strengths: Recommendations:
2017 ) .UAE cultural factors affect the descriptive study. The study underscores the The study provides valuable cultural insights into Future studies should aim to diversify sample
delivery of palliative care in Instruments Used: significance of cultural diversity in the the complex interactions between culture and sizes to improve the generalizability of findings
the United Arab Emirates Interviews, provision of palliative care in the palliative care, revealing how these elements affect beyond the UAE. Conducting comparative
(UAE). The study seeks to observations. UAE. It highlights the necessity for healthcare delivery. Utilizing a qualitative studies across various cultural contexts would
investigate how the varied Population: Emirati culturally sensitive communication approach through interviews and observations also be beneficial. Additionally, investigating the
cultural backgrounds of citizens, expatriate and decision-making approaches in allows for the collection of rich data, leading to a effectiveness of culturally tailored interventions
Emirati citizens and healthcare providers. end-of-life care, noting the challenges more nuanced understanding of the topic. in enhancing palliative care delivery is essential.
expatriate healthcare Outcome Measures: faced in establishing such services and
providers shape Influence of cultural the importance of respecting cultural Limitations:
communication, decision- factors on differences. The lack of a specified sample size poses
making processes, and communication, challenges to the generalizability of the findings,
perceptions of end-of-life decision-making and the focus solely on the UAE context limits
care broader applicability. Despite this, the results offer
potential guidance for the development of
culturally sensitive healthcare practices,
highlighting the need for further exploration of
cross-cultural perspectives and addressing sample
size limitations.
(Al-Shamsi & Challenges in Palliative Care Design: Mixed- Limited services, poor pain Research on palliative care encounters obstacles
Tareen, 2018). in the UAE: methods study. management, access to medications is Strength: Identifies barriers to care and pain commonly seen in health research. Additionally,
UAE - Why is palliative care Instruments Used: Not constrained. management. it faces significant barriers such as the exclusion
limited in the UAE? detailed. Population: of palliative care in cancer control strategies,
Palliative care for life- UAE citizens, opioid Limitation: Resource limitations, lack of political limited resources, lack of funding, and limited
threatening illnesses is consumers, oncology support for opioid use political acceptance due to the use of opioid
restricted in the UAE, with patients. Sample Size: analgesics.
only two hospitals providing Not specified. The lack of research in palliative care in the
such services. Outcome Measures: UAE is a major challenge for the healthcare
Barriers to opioid sector. Collaboration between academic
- How difficult is access to access, palliative care institutions and healthcare organizations is
pain medication in the UAE? delivery crucial to prioritize and support research
Access to pain medications initiatives in this field.
is constrained, indicating a
need for more trained
personnel, such as
counselors and care
coordinators, in palliative
medicine.

- How can we enhance

palliative care and its
outcomes in the UAE?
The study aims to empower
the government to establish
regulations prioritizing
palliative care, enhance

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training for healthcare
providers, and incorporate a
palliative care program into
a national cancer control
plan recommended by the
WHO to address existing
gaps in palliative care and
improve patients' quality of
life.
(Tarberg et al., Study Aim: Design: Qualitative Findings: Strengths: Research Gaps:
2024). Mid- The study aims to explore narrative study. Eleven family caregivers shared their The study highlights the impact of family caregiver Research on family care narratives in palliative
Norway the experiences of family Instruments Used: experiences related to palliative care. involvement on their lives and suggests ways to care is limited due to insufficient documentation
caregivers involved in Thompson’s five- The narratives highlighted four enhance their experience. and analysis. Family caregivers play a crucial
palliative care. level framework for interrelated themes: early phase, role in supporting patients, liaising with
Silent voices: Research Question: patient-directed middle phase, dying phase, and Limitations: healthcare providers, and managing end-of-life
Family How do family caregivers involvement. follow-up after death. A common When interviewed, informants may have been in a care issues. Capturing firsthand accounts of
caregivers' perceive their information Population: theme throughout all stages was low state of grief, potentially influencing how they family involvement can help address issues such
narratives of access and involvement Norwegian family caregiver involvement. articulated their experiences. The findings reflect as caregiver burnout, decision-making dynamics,
involvement in during the different phases caregivers of patients the researchers' interpretations of the caregivers' continuity of care, and the overall palliative
palliative care. of palliative care? in palliative care. subjective experiences. experience. Prioritizing research that focuses on
Sample Size: 11 family perspectives is vital for advancing
participants. Outcome palliative care and ensuring that caregivers'
Measures: voices are heard.
Involvement in
palliative care phases
Harhara, The study aimed to Design: Main Findings: The study Strengths: Recommendations:
T., explore the Qualitative found significant gaps in - The study provides a rare insight - Develop comprehensive
AlMansoori perspectives and study. formal palliative care into palliative care education in an palliative care training programs
, D. A., experiences of Instruments education, leading to a lack emerging healthcare system like the within medical curricula to ensure
Ibrahim, internal medicine Used: Semi- of confidence among UAE. that all residents are equipped with
H., & residents in the UAE structured focus residents in managing end- - It includes perspectives from a the necessary skills and knowledge.
AlMansoori regarding their groups. of-life care. Cultural and diverse group of residents across - Implement clear, culturally
, D. M. involvement in Population: religious factors, along with different year levels, which adds sensitive protocols for end-of-life
(2022). palliative care (PC), Internal inconsistent guidance from depth to the findings. care to reduce uncertainty and
Internal including how these medicine faculty, were identified as Limitations: enhance the quality of patient care.
Medicine experiences shape residents from major barriers to effective - The study primarily reflects the - Address the emotional well-being
Residents' their learning needs two UAE training and practice. views of female residents, which could of residents by providing support
Perception and readiness to residency Residents expressed limit the generalizability of the systems and promoting help-seeking
s and provide end-of-life programs. emotional distress due to findings. behaviors.
Experience care. Sample Size: 52 their perceived inadequacy - The perspectives of other Knowledge Gaps:
s in participants. in providing comfort care stakeholders, such as faculty and - Further research is needed to
Palliative Outcome and the ethical dilemmas patients, were not included, which explore the perspectives of other
Care: A Measures: they faced. may have provided a more stakeholders in the healthcare
Qualitative Perspectives on comprehensive understanding of the system, including patients, families,
Study in th training, challenges. and faculty, to gain a more holistic
emotional - Cultural and religious contexts view of the challenges in palliative
impact, unique to the UAE might influence the care.
United
cultural/religious findings, making them less applicable
Arab
barriers to non-Arab or Western settings.
Emirates. - There is a need for studies that
*BMC examine the long-term impact of
Palliative improved palliative care training on

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Care*, patient outcomes and resident
21(15). satisfactio
Abu Dhabi,
UAE

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Similarities Across the Studies:

Hassankhani (2020), Aneka Paul (2020), Callaghan et al. (2024), Rafidah Abdullah et al.

(2020) are four studied works that are also similar to each other in terms of analyzing palliative

care challenges and experiences. All studies aim to identify challenges that caregiving staff,

healthcare providers, and family members experience in hospice care with or without cancer

patients or those in their terminal years. Hassankhani’s (2020) study investigates the barriers

professional caregivers encounter in delivering home-based palliative care to cancer patients,

identifying three major obstacles: absence of instructions, hopeless families, and

nonprofessionalism. Similarly, Aneka Paul (2020) writing on the situation of primary caregivers

in India also calls for earlier engagement in palliative care and the lack of support from hospitals

as a major concern.

Hassankhani’s and Paul’s research both collect qualitative data to explore these barriers

focusing on the mental and physical outcomes. Similar to these themes, Callaghan et al. (2024)

conducted a study on the perception of family caregivers regarding the symptom burden as well

as the received palliative care services in Saudi Arabia. Like this study, which utilizes a cross-

sectional survey, here also some practical problems with support and communication are raised,

although, most of the caregivers consider that respect for the patient’s dignity is guaranteed.

Last, Rafidah Abdullah, Bursan, Nordin, & Ismail, (2020) conduct a systematic review to

understand the end-of-life care preference among Muslim patients under the umbrella topics of

selflessness, ambivalence, and the role of Islamic belief in palliative care. In each of the four

research articles, the authors raise calls for improved guidance, organization, and appropriate

cultural care. They also indicate the lack of knowing what is unknown like lack of knowledge on

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caregivers' support and culture and lack of exploration of the practices that should be adopted in

different regions/ populations for managing stroke. Several common factors are worth

mentioning: the several studies used small sample sizes, most work was culturally/religiously

framed, questions arising from the generalizability of the results were raised and future research

should be extended to include other cultural/religious backgrounds.

Summary:

These current studies identified several objectives concerning primary and other palliative care

which entails the following difficulties: The involvement of caregivers should be started earlier;

communication should be improved; and the support programs must be defined and structured.

They speak to the need to take cultural, religious, and regional factors into care especially when

considering palliative care. The guidelines used in these cases should be improved; the staff

should be trained appropriately; more research should explore this field and discuss gaps related

to it.

References

 World Health Organization. (2020). Palliative care statistics. Available from:

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

 Al-Shamsi, H. O., Iqbal, F., Nijhawan, N. A., & Kourie, H. R. (2024). Pancreatic

Cancer in the UAE. In Cancer Care in the United Arab Emirates. Springer. Available

from: https://link.springer.com/chapter/10.1007/978-981-99-6794-0_29

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 Callaghan, S., Abudari, G., Sadler, K., Almutairi, M., Ahmad, F., & Alalwani, W.

(2024).

Family Caregivers Perceptions of Patient’s Symptom Burden and Satisfaction with

Palliative Care Services in a Tertiary Care Center in Saudi Arabia. Saudi J Nurs

Health Care, 7(1), 11-20.

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