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Challenges on the Provision of Palliative Care Services for Patients with

Cancer in Palestine: A Mixed-Methods Study

Introduction

Cancer is a devastating disease that imposes a heavy burden on patients, family, and public health

services (Bray, Ferlay et al. 2018). It is an increasingly significant reason for morbidity and

mortality all over the globe (Bray, Ferlay et al. 2018). There is notable increased in cancer

incidence worldwide; in 2018, about 18.1 million new cases (not including skin cancer other than

melanoma) were diagnosed. More than 9 million deaths; 70% of them occur in low-and-middle-

income countries (World Health Organization 2018).

Cancer is one of the four main leading causes of death in the Eastern Mediterranean Region (Ferlay,

Soerjomataram et al. 2015). Incidence of cancer cases is expected to project in the next 15 years

from 100% to 180% (International Agency for Research on Cancer and World Health Organisation

2012), and the highest projection will be observed among WHO regions (Mokdad, Jaber et al.

2014). Palestine one of the Eastern Mediterranean countries facing a growing burden of the non-

communicable diseases which is added as a priority in the Palestinian health context (Ministry of

Health-MOH, 2014a). Cancer is one of non-communicable diseases and is considered the third

major cause of morbidity and mortality after heart disease and cerebrovascular disease in the Gaza

Strip (GS). Colorectal, breast, and lung cancers, and leukemia are the most common type of cancers

among adults in the GS (MOH, 2014b); treating these cancers place high demands on health

services- in a country with scarce resources - resulting in high direct and indirect costs of care.

Cancer has a significant impact on the life of patients and affects their physical, functional,

emotional, social and spiritual well-being (Surbone, Baider et al. 2010). The diagnosis of cancer

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frequently results in a complex set of issues that patients and their families must confront (Holland

2003). Cancer treatment leads to a lot of treatment-related symptoms that may persist for a long

time, may increase distress, and pressure to adapt with the demands of illness and treatment

requirements (Sharp, Carsin et al. 2013). A cancer diagnosis places also significant burdens on the

patient’s family caregivers (Girgis and Lambert 2009, Northouse, Williams et al. 2012). It is known

that cancer is a terminal illness in which persons with cancer often require high levels of care to

live in dignity during disease journey. Thus, appropriate care should be available.

Palliative Care (PC) is considered one of the most holistic and appropriate approaches to providing

specialized medical and nursing care for people with life-limiting diseases (Gomez-Batiste,

Stjernsward et al. 2013). Cancer, one of these diseases can not too often be cured, although a lot

can be done to make the lives of oncology patients with advanced disease meaningful and

productive. It is defined as “an approach that improves the quality of life of patients and their

families 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” (Stjernsward, Foley et al. 2007, World Health Organization 2017). Therefore, the main

purpose of PC is to relieve symptoms that appear when cancer is progressing and allow them to

live in a comfortable way rather than cure the disease (Kaye, Rubenstein et al. 2015, World Health

Organization 2018).

Although PC has become a significant approach to improving patient’s quality of life worldwide,

multiple challenges continue to create obstacles in its adoption and implementation. For example,

most PC models that already exist were introduced and development in Western countries (Sarhill,

LeGrand et al. 2001, Sachedina 2005) and may not be congruent with some cultural issues (e.g.

religion, beliefs, and norms) in other countries. Training and healthcare providers (HCPs) related

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issuers are other obstacles preventing the adaptation of PC (Hawley 2017). In addition,

administrative related issues such as access to opioids (Hawley 2017) and an unwillingness of

patient and family to be referred to specialized PC units may also prevent the adoption of PC

services. Despite, many barriers and facilitators of providing palliative care have been identified

in various reviews; some of investigations have been conducted in the West (Dalgaard, Bergenholtz

et al. 2014, Aldridge, Hasselaar et al. 2016, Hannon, Zimmermann et al. 2016, LeBlanc, Roeland

et al. 2017, Soto-Perez-de-Celis, Chavarri-Guerra et al. 2017) and other in East countries (Bingley

and Clark 2009, Shawawra and Khleif 2011, Silbermann, Arnaout et al. 2012, Zeinah, Al-Kindi et

al. 2013, Abdel-Razeq, Attiga et al. 2015, Fadhil, Lyons et al. 2017). No studies addressing barriers

and facilitators regarding such care have been conducted in Palestine where the healthcare system,

culture, organization and practices are different from other countries.

Little or no attention has been given to these aspects of cancer care in hospitals, and community

institutions. The few studies that have been conducted in the GS focus mostly on risk factors,

epidemiology, and QOL, but none published triangulated data addressed the challenges on the

provision PC for patients with cancer in the GS, despite the increasing number of newly diagnosed

cases. The present study aims to address the challenges or barriers associated with the provision of

PC services of cancer patients in the GS and help develop and refine services that address the gaps

in cancer holistic care. The long-term goal of this research is to raise the attention of governmental

(policymakers and stakeholders) and societal institutions of the magnitudes of PC for cancer

patients that help reduce the negative impacts resulting from the disease process and long-term

treatments.

Project objectives

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The overall purpose of this study is to address the challenges or barriers associated with the

provision palliative care services in the Gaza Strip, and to draw upon these findings to develop

policy recommendations. Such information will help to develop and refine services to address the

gaps in holistic cancer care that exist. To fulfil this purpose, several aims were set-up including the

following:

1) To assess health care providers (nurses and physicians) knowledge, attitudes, and perception

regarding palliative care;

2) To explore cancer patients’ knowledge of, and attitudes to, palliative care;

3) To explore palliative care needs from cancer patients perspectives;

4) To gain insight into the readiness and availability of palliative care services of cancer in Gaza

Strip;

5) To describe the palliative care services currently being used by cancer patients’ living in the

Gaza Strip;

6) To explore the perspectives of Ministry of Health policy makers with regards to challenges

on the provision palliative care services and identifying examples of ‘good model’ of

bringing into introducing stage; and

7) To explore the variation in the palliative care in reference to patients and their healthcare

providers-related characteristics

The results of this study will help to develop and refine services to address the gaps in PC of cancer

care that exist. Addressing these research aims will lead to a composite understanding of the

barriers and possible facilitators on the provision PC services in hospitals, and the development of

research findings that have direct application to health care policy in Gaza Strip -Palestine.

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Central research questions

1) What are the challenges or barriers on the provision of palliative care of cancer patients living

in the Gaza Strip?

2) How could identified issues be addressed to inform policy and clinical guidelines in practical

environment?

Significance of the study

This study also will promote the understanding of the suffering of cancer patients and their needs

and the expected results will help identify the status of PC that patients receive. This information

will enable building a body of a holistic approach for the treatment and management strategies of

cancer patients, given the local and global increase in a number of cancer patients. In addition, this

study will help design PC and skills-building interventions to address the challenges or barriers and

inform future programming needs for mitigating and alleviation these barriers. Moreover, it will

provide recommendations to healthcare providers at the Palestinian Ministry of Health regarding

the importance of palliative care. Finally, it will help the Palestinian Ministry of Health to promote

services and feed into the preparation of future strategic plan processes with respect to cancer care

in the region. The researcher is expected to stimulate changes in people's culture and focus on PC

as a part of a supportive treatment -besides medical interventions- that will help advance cancer

care in the GS.

For the host institution (The Hong Kong Polytechnic University), new information and ideas from

a different culture (Arab culture) with its special beliefs and norms will be gained and the expected

results will be used as a pilot for cross-cultural studies between Asia and the Middle-East. Nursing

Science at the Hong Kong Polytechnic University is an empowering environment for global aspects

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to this topic in developing countries, which is an added value for its educational mission and its

contribution to better human health and wellbeing worldwide. In addition, this study will add a

significant body of knowledge for PC and its relation to cancer in Hong Kong. This study will

enable Nursing Science at the Hong Kong Polytechnic University to better understand the Arab

culture and behaviors surrounding the PC and management of cancer. Finally, this study is relevant

to the expertise of Prof. Dr. Alexander Molasiotis and his research interests regarding cancer

patients. Prof. Dr. Alexander Molasiotis will apply his expertise in a different setting (GS, Middle-

East), and will help promote higher nursing education in this part of the world.

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Definition and Development of the Concept of Palliative Care

England witnessed in the 1960s a meaningful distribution pertaining the growth of the modern

hospice movement. Dame Cicely Saunders (1918-2005) is considered one of the pioneers in the

field and established St Christopher’s Hospice in England in 1967. To illustrate the complexity and

indivisibility of pain, Saunders brought to surface the concept of “total pain” including: physical,

psychological, social, and spiritual dimensions. Saunders stressed that embracing relatives in the

care of patients at the end of life is of utmost importance(Lutz 2011).

During 1970s, the hospice ideal occupied other settings in the UK (Clark 2007), for instance, home

and hospital care, in spite of the focus was on symptom management of cancer patients. Hospice

services started to take place in the rest of Europe in the 1980s.

In 1989, the WHO defines the concept of palliative care as “an approach that improves the quality

of patients’ lives as well as their families 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. The definition was optimized in 2002 (Stjernsward, Foley et

al. 2007, World Health Organization 2017).

Palliative care provided to patients whose disease does not respond therapeutically. The key

principle of PC is to help patients and their families live decently (World Health Organisation

2013). Palliative care purposes to enhance patient quality of life with as effective relief from pain

and other distressing symptoms as possible. Furthermore, it emphasizes that PC can be applied as

early as possible in the course of any chronic, ultimately fatal illness (World Health Organization

2002).

The concept of palliative care derives from the notion of achieving a “good death” (Randall and

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Downie 2006). The aim of achieving a good death has its roots in a religious notion and strives

towards “…an acceptance of human mortality and a recognition that human weakness and sin

could be forgiven…” (Randall and Downie 2006 p. 5).

Jacobsen (2010) describes how a growing interest in the good death is an expression of a more

personalised and intimate relationship with death, whereby there is a desire to accept the process

of death as a part of life, rather than denying it. In the field of palliative care this creates an

increased focus on individual autonomy and the involvement of patients and relatives in

decisions, which in the past were taken by the doctor alone (ibid.). Since the concept of a good

death is influenced by societal structures, such as culture, religion and economy, as well as being

personalized, it is impossible to reach a universal consensus on what the good death should

consist of.

The European Association for Palliative care (EAPC) describes palliative care as a comprehensive

and active care and it means to better the quality of patient’s life and his relatives socially,

psychologically and existentially, in particular when looking after terminally-ill patient(van der

Steen, Radbruch et al. 2014).

Palliative care is an approach rather than a clinical specialty. It is a subject area which covers a

number of clinical specialities. (National Board of Health, 2011). In the UK, palliative treatment

was green-lighted as a sub-speciality under general treatment in 1995, but it is not considered so in

many countries(Clark 2007).

The term palliative care has alternatives like end-of-life care, hospice care and terminal care; they

often convey the same meaning for the same purpose in the literature. Miscellaneous terms are in

use among various countries around the word. The European guidelines (Radbruch and Payne

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2010) use the terms palliative care, end-of-life care and hospice care interchangeably which all

refer to the care that provided for the patients suffering from life-threatening and life-limiting

illnesses, whereas the term “ terminal care “ is the care that given at the final stages of life (ibid.).

The preliminary use of palliative care was beneficial to people of life threatening diseases,

regardless of the undiscovered diseases that have emerged during the last decades. The American

Society of Clinical Oncology has pinpointed in its guidelines the topic of PC and confirmed that

the early integration of PC in oncology has been emphasized for cancer patients(Ferrell, Temel et

al. 2017).

As mentioned above, WHO extends a definition of palliative care as it is an overall approach that

requires multidisciplinary staff (World Health Organisation 2013). so teamwork is inseparable part

of palliative care since it includes at least two members of healthcare (Xyrichis and Lowton 2008).

The main job for healthcare team is to achieve the palliative care principle to meet the various

needs of patients. The involvement of the caregivers in such work requires knowledge that differs

from one member to another; hence, the team should include healthcare members from diverse

specialties(Radbruch and Payne 2009). Those healthcare professionals in addition to primary care

providers and community are all there to assist patients in living energetically and as healthily as

possible until they die with dignity. Furthermore, PC plays a vital role in sensitizing the family

about their patient’s illness(Palliative Care Australia 2003).

Consequently, Palliative care should be a priority healthcare sector as well as it must have an

overall policy to ensure its structure and funding at all levels (Gomez-Batiste et al. 2013; World

Health Organization 2013). Clark et al. showed in 2002 that there are variations in the care, due to

management patterns, work organisation and the use of resources in the hospital, but there is only

very limited knowledge about how and whether the organisation of palliative care in the hospital

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today, is controlled by the overall policy.

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Who needs palliative care globally?

Palliative care is a worldwide concern; about 56 million people die annually all over the world

because of debilitating chronic diseases. Chronic diseases like cancer are increasing as age

advances. According to estimates that by 2030, the number of young people will exceed the number

of elderly people (Kuebler 2003). Not only 56 million are affected by the deceased or needed

palliative care, but in addition to a conservative estimate of five persons for each death, including

children, parents, siblings, and friends. This addition brings the number of people affected

annually by death to 300 million or about 5% of the world's population (Singer and Bowman

2002).

The life-threatening patients varies in their engagement into PC. For example, the expected

mortality from cancer and non-malignant diseases is categorized into of care requirement: 1) PC

that is provided by the patient’s GP and/or community nurses, 2) PC that is provided sporadically

by both specialist and generalist teams, and 3) PC that is provided continuously by highly qualified

palliative care specialists (Palliative Care Australia 2005).

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Palliative care in Palestine versus the world

In 1990, WHO has recommended everyone who in need of PC for having the right to join it. And

it also advised that the governmental health policy adopt that kind of healthcare (World Health

Organization, 1990). Furthermore, many people see that PC should be a part of public health,

accompanied by prevention, screening and early intervention (Faull, de Caestecker et al. 2012).

It’s hard to know full well the exact numbers of PC services because the various workforces and

supports on which PC services depend. In 2013, a survey was carried out to seven European

counties showed that all countries had a national health policy for developing and integrating PC

services which was either a part of cancer service planning policy or only regarding Palliative care.

All of them had at least one palliative care and the right of palliative care was a law that explicitly

passed in Belgium, Germany and France(Van Beek, Woitha et al. 2013).

Furthermore, the way of engaging PC in any country has been categorized into four main sets

according to the International Observatory on end-of-life care; countries having ‘no known

activity’, ‘capacity building’, ‘localized provision’ or ‘approaching integration’. About 234

countries assessed only 34 (Australia and the USA, most Western European and some Asian

countries) were categorized as approaching integration. Eighty countries met the ‘localized

provision’ criteria including many Asian, some smaller European and South American countries.

Forty-one countries were categorized as ‘capacity building’, this included many African and some

Middle Eastern countries. Seventy-eight countries were found to have ‘no known’ palliative care

services, this included many smaller island nations and the remaining African countries (Clark,

Wright et al. 2007).

Nearby our home, there’s a neighbour -------------- that is under a palliative care strategy which

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provides direction for the people and spreads out over two main islands

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Epidemiology of Cancer

Cancer is a devastating disease that imposes a heavy burden on public health services across the
world (WHO, 2014). The same source indicates that in 2012 cancer caused approximately 8.2
million deaths; its annual incidence will rise according to current estimates from 14 to 22 million
cases within the next two decades. It is already ranked second of four leading causes of death in
the Eastern Mediterranean Region (WHO- International Agency for Research on Cancer, 2013).
In addition, the largest increase in cancer incidence among the WHO regions in the next 15 years
is likely to be in the Eastern Mediterranean Region, in which projection models predict an increase
of between 100% and 180% (WHO, 2009).

Impact of Cancer Disease on Patient Quality of Life

QOL is term used to assess the individuals and societies well-being, and it is also used as an
outcome measure in studies to evaluate the effectiveness of cancer treatment (Testa and Simonson,
1996; Spilker, 1996). It defined as perception of individual to their life, values, objectives,
standards, and interests in the framework of culture (WHO, 1997).

QOL can affect by a number of illness-related factors and the extent of symptoms distressed
experienced by an individual has been related to QOL in a number of people with cancer (Testa
and Simonson, 1996; Spilker, 1996). Some of these symptoms subtle and some not at all subtle;
some symptoms of cancer affecting QOL in patients would be cancer type and stage, as some types
of cancer do not present any symptoms until they are in advanced stages, time since diagnosis,
patient acceptance, intensity of the disease and the level of psychological distress practiced by
caregivers (Heydarnejad , Hassanpour and Solati, 2011). Social/emotional support, health habits,
spiritual/ philosophical view of life, and body image concerns are the main problem of long-term
cancer survivors (Casso, Buist and Taplin, 2004; Kornblith et al., 2003).

In the GS, number of studies focus on QOL of cancer patients; the latest study in GS that assess
QOL among Patients with cancer revealed that the global QOL was less than half of full score
(49.9%). The emotional function domain had the lowest score while the cognitive domain had the
highest score (Shamallakh, 2014), while in the West Bank, the global QOL among patients
diagnosed with cancer reached 53% (Dreidi and Hamdan-Mansour (2016).

Psychosocial Needs and Consequences of unmet Needs

Psychosocial cancer needs are defined as “those needs arising in the physical, informational,
emotional, psychological, social, spiritual, and practical domains as part of a patient’s experience
of cancer and treatment” (Fitch, 2008). Psychological problems can arise or be exacerbated by a
cancer diagnosis and its treatment. Inability to solve these problems results in needless patient and
family suffering, obstructs quality health care, and can potentially affect the disease course
(Segerstrom and Miller, 2004). Social isolation and other social factors, stress, and untreated
mental health problems contribute to emotional distress (Hegel et al., 2006). FCs unmet needs for

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providing symptom management and other types of support negatively affect the quality of their
caregiving, especially towards the patients’ end of life (Park et al., 2010).

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Impact of Caregiving on the Family Caregiver’s Quality of Life

Cancer has a significant impact on the life of patients and affects their physical, functional,
emotional, social and spiritual well-being (Surbone, et al. 2009). The diagnosis of cancer frequently
results in a complex set of issues that the individual must confront (Holland, 2003). Cancer
treatment leads to a lot of treatment-related symptoms that may persist for a long time and may add
distress to patients who are under great pressure to adapt with the demands of their illness and
treatment requirements (Sharp and Timmons, 2010).

Cancer is also a major event for the patient’s family caregiver (Girgis and Lambert, 2009). FCs are
deeply affected when one of their relatives has cancer (Northouse 2005). Relatives are often in
struggle between their own suffering and the concern for the patient (Grant, et al. 2013). Caring
for cancer patients is demanding and overwhelming and can be a stressful experience that may
have a negative impact on the physical and psychological health of the caregiver. Caregivers
describe the experience of caring for a loved one who is near death as influencing many domains
of life. The impact on a caregiver’s quality of life has been described as having four distinct
dimensions: physical, psychological, social, and spiritual (Ferrell, et al. 1991). Northouse, et al
(2007) confirmed that spouses' higher distress due to their limited support from others,
communication problems with partners, high uncertainty, and lower caregiver self-efficacy
diminish their ability to manage the effects of illness.

Patients and their FCs may also be significantly challenged in their interpersonal relationship,
cooperating under the pressure and the demands caused by the disease (Fergus and Gray 2009,
Northouse 2005). Moreover, FCs are expected to provide complex care at home with little
preparation or support (Van Ryn, et al. 2011). When the demands placed on caregivers exceed their
resources, caregivers feel overwhelmed and report psychosocial disturbances (Wilcock and
Twycross, 2009).

All of the information that mention before about impact of caregiving on the family caregiver’s
QOL come from US, and till now there is no data available about this topic in the GS. No attention
and concern about FCs. As mention before, some studies concern only about QOL of breast cancer.

Cancer and the Palestinian Health Care System

Cancer population

The GS is a narrow band of land; it is 45 kilometers long and 6-12 kilometers wide with an area of
378 square kilometers. It has a population of 1.7 million (PCBs 2013); recent reports indicate that
the GS is among the most densely populated areas on earth. The report of Palestinian Ministry of
Health (MOH) indicates that there is an increasing trend of oncology related diseases among Gazan
people.

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Cancer currently ranks as the third major cause of morbidity and mortality after heart disease and
cerebrovascular disease. Colorectal, breast, and lung cancers, and leukemia are the most common
type of cancers among adults (MOH, 2014b). The reported number of new cancer cases in 2005
was 32.7 per 100,000 in the GS; 45% of all cases were in men and 55% in women (Husseini, et al
2009). In 2008, the crude cancer incidence rate for all the population is 51 per 100,000 persons. It
is apparent that the number of cases increases by time (945 cases were reported during the year
2009). The crude cancer incidence rate for all the population is 65.6 per 100,000 persons which is
higher than the previously reported figures.

According to the Palestinian National Cancer Registry Centre (2013), the total number of registered
cancer cases in the GS during 2001-2010 were 7,480, with an average of 748 newly-diagnosed
cases per annum and an incidence ratio of 53.8/100,000 (range from 33.3 to 65.6). Cancer was
more common in women than in men (53% vs. 47% respectively). Breast, leukemia, lung and
colorectal were the most common types of cancer for both sexes. In the last 5 years of registered
data, the trend of cancer increased from 567 index cases in 2006 to 934 cases in 2010 (MOH, 2013).
Treating these cancers make high demands on cancer services, resulting in a high direct cost of
care, high indirect cost in loss of productivity, and a lot of societal stress.

The latest cancer report shows the total number of registered cancer cases during 2009-2014 were
7,069 with an average of 945 newly-diagnosed cases per annum and an incidence ratio of
65.5/100,000 (range from 65.5 to 83.9). Cancer was more common in women than in men (54.5%
vs. 45.5% respectively). For males, the most common cancers are colorectal cancer which forms
11.7% from all male cancers (MOH, 2015). The second common cancer among males is the cancer
lung which forms 11.6% from all male cancers. For females and as expected the cancer breast is
the most common cancer forming 31.3% of cancers among women. Colorectal cancer is reported
with incidence rate 9.0 to be the second common cancer among women. In the last 5 years of
registered data, the trend of cancer increased from 845 index cases in 2009 to 1502 cases in 2015
(MOH, 2015).

The Palestinian Health Care System

In the GS, healthcare services are provided by the MOH, UNRWA NGOs, and private for-profit
service providers. MOH is the main healthcare provider in the GGs; it providers Primary Health
Care (PHC), secondary and tertiary services almost for the whole population. It purchases advanced
medical services through referring patients to the neighboring countries and other private
institutions and NGO health care facilities including local Palestinian facilities.

The oncology services are one of tertiary services that are provided free of charge at three MOH
hospitals. The number of oncology beds in the three hospitals (Al-Shifa, Al-Rantisi Pediatric and
the EGH) is around 49 (MOH, 2015). Regarding cancer services, there are gaps in the strategy of
cancer control in Gaza Governorates starting from planning up to implementation (Ammer, 2012).
Those gaps are mainly related to poor financial and administrative coordination, shortages in

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healthcare human resources and inadequate staffing, inappropriate infrastructure of oncology
buildings and deficiencies in necessary equipment and supplies. Services are limited to some
sporadic programs and plans. In addition, cancer diagnostic services have faced many barriers
leading to the delay in the diagnosis of the disease.

There is dire need to fill gaps in the diagnosis of cancer (Histopathology), promoting lab services
pertaining to oncology (Fluro-cytology, cytogenetic analysis, Molecular analysis/Karyotyping).
Until now, there have been no Palestinian protocols for the treatment of cancer. It is important
to invest in developing protocols which consider feasibility and affordability. Availability of
chemotherapy and ensuring its appropriate utilization according to protocols is needed. Also,
providing training on chemotherapy to pharmacists, doctors and nurses is essential. There is no
specific palliative care for patients with cancer, an area that also requires a lot of investment.
Palliative care services are hardly available inside the GS (Skeik, 2013). Radiotherapy is also
lacking and client treble outside Gaza to receive this service. In addition, hospice care at home
is not provided (patient do not know how to live or how to die).

Checking with health facilities, there are 8 mammogram facility-based units are available in the
GS; equally distributed between NGOs and MOH (2012b). Not all the available mammograms are
digitalized.

Psychosocial care for Cancer patients and their family caregivers in the GS

The psychosocial influence of cancer in the GS attracts a lot of clinical and research interest
because of the high prevalence of cancer, and the magnitude of distress associated with the disease
itself, its treatment, the long duration of symptoms, and other external factors that affect cancer
patients and their FCs heath status, mentality, psychological and social well-being. For example,
the financial crisis of the Palestinian Authority, as well as the political divisions between the West
Bank and GS have been the cause of chronic shortages, which is being felt at the hospital and
health-care level in the form of curtailed services and higher costs to patients. The shortage of drugs
including chemotherapeutics, antibiotics, analgesics, and anti-inflammatory drugs is added to the
disease burden. This shortage puts patients at substantial risk of medical complications and
deterioration of their health status. Patients are forced to cope by trying to procure medications
from other health providers or from the local market at greater cost, using inappropriate substitute
medications, and by seeking treatment abroad. All of these factors can cause additional stress to
cancer patients and their FCs. Interventions that focus on self-efficacy and family support can help
mitigate this burden, preserve community coherence and alleviate social distress in times of crisis.

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Aim, methodology, foreseen achievement (Detailed research plan)

Objective

The overall purpose of this mixed method study is to address the quality of life and unmet
psychosocial care needs of cancer patients and their family caregivers living in the Gaza Strip, and
to explore the perspectives of expert healthcare providers from the Gaza Strip about quality of life
and psychosocial care provided to cancer patients and their family caregivers for helping develop
and refine services that address the gaps in cancer holistic care.

The Specific Aims of the project are to:

Specific Aim (1) to assess quality of life and needs for psychosocial care of cancer patients’ and
their family caregivers’ living in the Gaza Strip.

Specific Aim (2) to gain insight into the constructs constituting anxiety, depression and distress of
cancer patients’ and their family caregivers’ living in the Gaza Strip.

Specific Aim (3) to explore perspectives of expert healthcare providers with regards to
psychosocial care provided to cancer patients and their family caregivers from the Gaza Strip, and
identify examples of ‘good practice’ of addressing psychosocial needs from the perspective of
patients/families and healthcare providers.

Specific Aim (4) to explore the variation in the quality of life and the need for psychosocial care
in reference to patients and their family caregivers-related characteristics

The theoretical framework

The theoretical framework that will use for this research study is the Stress-Appraisal Model. This
model use to describe and identify factors that may account for variance in the quality of life and
psychosocial needs of cancer patients’ and FCs. This model was adapted from the theoretical work
of Lazarus, 1991 and 2000 Lazarus et al, 1989 and Lazarus and Folkman 1984 for cancer patients
and their FCs. A stress appraisal model guided selection of person factors, social/family factors,
illness-related factors, appraisal factors, and quality of life, measured with psychometrically sound
instruments.

According to the theoretical model shown in Fig 1, there are a number of antecedent variables (eg,
person, social, and illness-related) and mediating variables (eg, appraisal of illness, uncertainty,
and hopelessness) that may directly or indirectly affect patients’ and family members’ quality of
life. The stress-appraisal model also specifies that there is a reciprocal relationship between the
quality of life of patients and family members.

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Figure (1): Stress-Appraisal Model

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Methodology

The study will carry out using a mixed method approach, with primary collection of cross sectional
quantitative (survey) and qualitative methods (focus groups and key informative interview) for data
collection from cancer patients and their FCs, and expert healthcare providers’. Data triangulation
will provide better understanding of the research problem and will strengthen research findings.
An ethics committee approval will be obtained prior to the initiation of the study.

Study population

The study will include three groups of participants. The first group will include patients with an
advanced cancer diagnosis (stage II, III, or IV) of one of four tumor types: breast, colorectal,
leukemia, and lung who were registered at the Cancer Registry from 2010 to 2014, which accounts
for 2751 patients (MOH, 2015). The second group will include their FCs, which will be recruited
to the study from the patients. The third group will include expert healthcare providers’ who work
at oncology centers at Shifa Hospital and the European Gaza Hospital.

Table (1) Distribution of Cancer Type in GS from 2010 to 2014

Years Nu. Breast Colorectal Lung Leukemia Total


2010 900 190 80 100 90 460
2011 989 210 100 120 105 535
2012 1181 260 120 70 75 525
2013 1355 280 160 65 90 595
2014 1430 272 150 110 104 636
Total 6124 1212 610 465 464 2751

Sampling process

Based on MOH report cancer report (2015), the total number patients with an advanced cancer
diagnosis (stage II, III, or IV) of one of four tumor types: breast, colorectal, leukemia, and lung
who were registered at the Cancer Registry from 2010 to 2014, accounts for 2751 patients. The
researcher will use the Epi-info Statistical Program to calculate the sample size which
recommended a sample of 338 of patients. The researcher increased the sample to 350 to
compensate non-respondents and to increase statistical power which will be randomly selected
from the Cancer Registry database to be included in the study. The following parameters were used
to calculate the sample; maximum acceptable percentage points of error 5%, confidence level 95%,
and estimated percentage level 50%, total population 2751. For FCs, the researcher will select
caregivers in close contact with the patient during the disease period (n=350). For health care
providers, all cancer service healthcare providers who work at cancer centers will be included in
the study in addition to Minister of Health and Head of Cancer Register Office (n= 16)

Eligibility criteria.

21
(1) Inclusion criteria for patients: Adult (age 18-80 years old), diagnosed with one of four tumor
types: leukemia, breast, colorectal, and lung, registered at the Cancer Registry of the Gaza
Strip, and mentally able to complete the study survey.
(2) Inclusion criteria for FCs: Adult (age 18-80 years old), who have been identified from one
of participating cancer patients as a designated family caregivers during the disease period,
and mentally able to complete a study survey.
(3) Inclusion criteria for expert cancer healthcare providers: Providers who are working at two
oncology centers; Al-Shifa Hospital and EGH.

(1) Exclusion criteria for patients: Patients with other types of cancer; younger than 18 years old;
not able to provide consent for their participation in the study, not able to complete the
study survey due to health problems, and not able to communicate orally for the focus
groups.

(2) Exclusion criteria for caregivers: FCs younger than 18 years old; not able to provide consent
for their participation in the study, not able to complete the study survey due to health
problems, and not able to communicate orally for the focus groups.

(3) Exclusion criteria for expert healthcare providers: Providers who are directly involved in
supervision of this research study, or data collection from patients and caregivers.

Study Setting.

The research will take place in the Gaza Strip. It will involve the recruitment of cancer patients via
invitation letters from two centers; Al-Shifa Hospital and EGH.

Quantitative data collection:

Multiple instruments will be used to measure study variables (see table 1):

Patients and their FCs -related characteristics: Based on previous studies in the literature, the A-
self-administered survey used in this study will include questions related patients’ characteristics
such as age, type of cancer (breast, colorectal, lung cancer and leukemia), cancer stage, cancer
trajectory, and current treatment. Medical records were used to identify the current stage of
treatment, divided into three categories: Treatment stage, palliative stage, and disease-free status.
Family-related characteristics will include, such as gender, age, education, employment, household
income, relationships with the patient, cohabitation with the patient, and duration of care.

Psychosocial needs: The 48-item English version of the Psychosocial Need Inventory (PNI)
(Soothill et al. 2001) survey will use to assess the cancer patients’ and caregivers’ psychosocial
needs. The scale assesses six categories of needs: Informational, Practical, Supportive, Emotional
and Spiritual). In addition, cancer patients’ and FCs general views about healthcare services and
the most important factors that indicate good quality of services.

22
Quality of life: The 36-item Arabic version Short-form health and quality of life survey (SF-36)
will use to assess the cancer patients’ and caregivers’ quality of life. This instrument evaluates the
impact of the disease on adaptive functioning. The scale measure 8 basic levels of function:
physical function, physical role, bodily pain, general health, vitality, social function, emotional
role, and mental health. For more detail about QOL, the researcher also will use Functional
Assessment of Cancer Therapy General (FACT- G 4.0) survey which has 27 questions in four
domains: physical, social/family, emotional, and functional.

Cancer- and Cancer Treatment-related Symptom: The 27-item Cancer- and Cancer Treatment-
related Symptom Scale (CTSS) will use to assess the patients’ cancer- and cancer treatment-related
symptoms (Schmid-Buchi et al. 2009). The scale assesses the patients’ cancer- and cancer
treatment-related symptoms, complaints and impairments. The respondents were asked how
impaired they had felt by these symptoms in the past month. The scale consists four main factors
assessing gastrointestinal symptoms, pain and well-being, physical and social impairment and body
image.

Anxiety, Depression and Distress: Hospital Anxiety and Depression Scale (HADS) will use to
assess the cancer patients’ and caregivers’ anxiety and depression (Herrmann 1997, Zigmond &
Snaith 1983). Also, we will be used Distress-Thermometer (DT) scale will measure distress using
the original version by Roth et al. (1998).

Table (2) Variables and instruments used for quantitative research

Variables Instrument Patients’ Family


caregivers’
Psychosocial needs Psychosocial Need Inventory (PNI) √ √
Quality of life Short-form health and quality of life survey √ √
(SF-36)
Functional Assessment of Cancer Therapy √
General (FACT- G 4.0)
Symptoms Cancer- and Cancer Treatment-related √
Symptom Scale
Anxiety & Hospital Anxiety and Depression Scale √ √
Depression (HADS)
Distress Distress-Thermometer (DT) √ √

Qualitative data collection:

1- Ten focus groups will be used in this study: two groups will be included according to gender;
one group for men only (n = 8), and one for female only (n= 8). Four groups will be included
according to cancer types; each group will include specific type (n= 32). Two groups will be
included according to department; one group at EGH (n = 8), and another at Al-Shifa hospital (n=

23
8). Two groups will be included according to age; one group for young people (n = 8), and another
for older people (n= 8).

2- For FCs, the study will include two focus group (n= 16); the first group (n=8) will include
caregivers for patients treated at EGH, and the second group (n=8) will include caregivers for
patients treated at Al-Shifa hospital.

3-Key informant interviews with all specialized and trained cancer service providers (n=16) in the
two centers. The sample will include oncologist (n=4), general physician (n=6), specialist nurses
(n=4), Minster of Health (n=1) and Cancer Register Officer (n= 1)

Data entry and analysis:

For quantitative data, the Statistical Package of Social Science (SPSS) program will be used for
data entry and analyses. Frequency tables that show sample characteristics will be created and
univariate statistics (means, scores, standard deviations, percentages) also will use to describe the
sample on several socio-demographic and clinical characteristics. Furthermore, cross tabulation for
main findings and advanced statistical tests such as Chi square test to compare categorical
variables, and T test or One-way ANOVA test to compare means of numeric variables will be
performed when required to analyze survey data.

For qualitative data, open coding thematic analysis methods will be used to analyze the transcripts
of the focus group and key informant interviews. The researcher would obtain the main findings
from the transcripts of the interviews. Then, categorization of related ideas, and comparison and
integration between the quantitative and the qualitative findings will be done to create rich items
for discussion. Data analyses will be performed at the University of Basel, under the auspices of
the supervising mentor, Dr. Katapodi.

Ethical and Administrative Considerations


An ethical approval, according to the Helsinki Guidelines and an administrative approval will be
obtained from Institute of Nursing Science-Basel University and from the MOH—Gaza to conduct
the study. Every participant will be provided with a full explanatory form attached to the
questionnaire including the purpose of the study, assurance about the confidentiality of the
information, the instructions how to respond to the questionnaire, and a statement indicating that
the participation is voluntary. Honesty will be maintained during reporting and analysis of the data
with respect to confidentiality and respecting of results.

24
4.1 Timetable and milestones of Research Project

This study was initiated proposed in November 2016. The research proposal will be submitted to
and defended in the front of the Institute of Nursing Science (INS)-Basel University in March 2017.
At its development, the research proposal will describe the entire process and will provide
information and preliminary designs of the data collection and data analysis methods and tools.
Upon the approval, the researcher will develop the required tools depending on the PNI
questionnaire as starting point. The researcher under supervision Prof. Dr. Katapodi will consult a
group of 20 experts at the arbitration stage before the finalization of the tool. The arbitration will
last for 10 weeks including of tools in the light of reviewers and the academic supervisor’s
feedback.

In June 2017, a peer will ask to propose Arabic translation of the tool. In July 2017, the researcher
will apply translation-back translation method and consulted a second peer to ensure language
appropriateness. In doing so, the researcher will test the questions with five other individuals who
are not familiar with the English language. The purpose was to ensure Arabic- Arabic easiness and
appropriateness. In December 2017, the tool will be ready to go for data collection. However, the
researcher will delay the data collection and will pursue further reading of the relevant literature.

In March 2017, the researcher will construct expert data collectors and will carry out the
requirement training prior to piloting and field work. Actual data collection will start on 20 March
2018. Initial analysis of quantitative data will do between August and September 2018 prior to the
last stage of data collection and validation will talk place in November 2018 (Qualitative data
collection stage). Compiling results and reporting will start before and in parallel to qualitative data
collection.

The researcher will extract findings, create descriptive tables and perform inferential statistical
analysis, and then will explain findings through linking them to relevant pieces of the literature.
The first drafted ‘dissertation’ will be enrich and edit by supervisor Prof. Dr. Katapodi. The final
draft foe defense will be hand on 30 April, 2019.

25
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Abdel-Razeq, H., et al. (2015). "Cancer care in Jordan." Hematol Oncol Stem Cell Ther 8(2): 64-70.

Cancer is the second leading cause of death in Jordan after cardiovascular diseases. Due to
increase in life expectancy and prolonged exposure to risk factors, cancer mortality and morbidity
are expected to increase as the young population ages. This increase will constitute a challenging
burden on healthcare systems in Jordan and many other neighboring countries. Planning is key to
managing the expected rise in the demand for cancer care, and this will require public health
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Health Organization's Public Health Strategy for Palliative Care as a framework for analyzing
barriers to palliative care integration. RESULTS: We identified key barriers to palliative care
integration across three World Health Organization domains: (1) education domain: lack of
adequate education/training and perception of palliative care as end-of-life care; (2)
implementation domain: inadequate size of palliative medicine-trained workforce, challenge of
identifying patients appropriate for palliative care referral, and need for culture change across
settings; (3) policy domain: fragmented healthcare system, need for greater funding for research,
lack of adequate reimbursement for palliative care, and regulatory barriers. CONCLUSION: We
describe the key policy and educational opportunities in the United States to address and
potentially overcome the barriers to greater integration of palliative care into the healthcare of
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29
accessed information on services and health care systems. A total of 69 services were located; two
country members have a history of relatively sustained development of hospice and palliative
care, but provision across the Middle East Cancer Consortium region is highly variable at a local
level. Considerable barriers to service development were identified in a region already struggling
with many military and political conflicts. Key problems are a lack of secure funds and government
support, inadequate professional training programs, opioid phobia in professionals and the public,
and a lack of awareness and understanding of palliative care needs at public, government, and
professional levels. Key areas for further attention were increasing national and international
professional training and public education programs, improving opioid legislation and health care
policies, negotiating for secure government or health insurance funding provision, raising
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OBJECTIVE: According to the World Health Organization (WHO), palliative care (PC) should be
available to everyone suffering from life-threatening diseases and should be started early on in
the illness trajectory. However, PC is often initiated much later and is restricted to cancer patients.
There is a need for more knowledge about how early PC can be implemented in clinical practice.
The purpose of our study was to document the best evidence on methods for early identification
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pulmonary disease (COPD) populations, and to identify preconditions for early integration of
general PC in hospitals and outcomes for patients and relatives. METHOD: A comprehensive
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methods. A number of interacting disease-, staff-, user-, and organization-specific barriers need
to be overcome in order to implement early integration of PC in clinical practice. Early integration
of PC may lead to better symptom management, prolonged survival, and better quality of life.
SIGNIFICANCE OF RESULTS: No methods can be recommended for routine clinical practice without
further validation. There is an urgent need to develop and evaluate methods based on the holistic
assessment of symptoms or needs. The barriers to early integration of PC are most extensive with

30
regard to CHF and COPD. Professional training and education are recommended to facilitate early
implementation of PC. The evidence about outcome is sparse and mostly relates to cancer
populations receiving specialized PC.

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The 22 countries of WHO's Eastern Mediterranean Region are experiencing an increase in the
burden of non-communicable diseases (NCDs), including cancer. Of the six WHO regions, the
Eastern Mediterranean Region is projected to have the greatest increase in cancer incidence in
the next 15 years. Furthermore, most cancers are diagnosed at a late stage, resulting in a lower
cancer survival rate than in the European Region and the Region of the Americas. With increasing
numbers of deaths from cancer, palliative care should be available to relieve suffering in patients
with advanced disease and at the end of life. However, in the Eastern Mediterranean Region, the
palliative care available is variable and inconsistent. Several barriers exist to the development and
expansion of palliative care delivery in this region, including the absence of palliative care in
national policies, little partnership working, insufficient palliative care education for health-care
professionals and volunteers, poor public awareness, and gaps in access to essential pain-relief
medicines. In this Review, we explore data and evidence from published literature, WHO meeting
reports, cancer control mission reports, and the WHO global NCD country capacity survey to
identify the status of palliative care in the Eastern Mediterranean Region, including the challenges
and opportunities for development.

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31
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Kaye, E. C., et al. (2015). "Pediatric palliative care in the community." CA Cancer J Clin 65(4): 316-333.

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LeBlanc, T. W., et al. (2017). "Early Palliative Care for Patients with Hematologic Malignancies: Is It Really
so Difficult to Achieve?" Current Hematologic Malignancy Reports 12(4): 300-308.

Lutz, S. J. C. p. i. c. (2011). "The history of hospice and palliative care." 35(6): 304-309.

Mokdad, A. H., et al. (2014). "The state of health in the Arab world, 1990–2010: an analysis of the burden
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Northouse, L., et al. (2012). "Psychosocial care for family caregivers of patients with cancer." 30(11): 1227-
1234.

Palliative Care Australia (2003). "Palliative care service provision in Australia: a planning guide."

Palliative Care Australia (2005). "A guide to palliative care service development: A population based
approach."

Radbruch, L. and S. J. E. j. o. p. c. Payne (2009). "White paper on standards and norms for hospice and
palliative care in Europe: part 1." 16(6): 278-289.

Radbruch, L. and S. J. E. j. o. p. c. Payne (2010). "White Paper on standards and norms for hospice and
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Sachedina, A. (2005). "End-of-life: the Islamic view." Lancet 366(9487): 774-779.

32
Sarhill, N., et al. (2001). "The terminally ill Muslim: death and dying from the Muslim perspective." Am J
Hosp Palliat Care 18(4): 251-255.

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Silbermann, M., et al. (2012). "Palliative cancer care in Middle Eastern countries: accomplishments and
challenges." Ann Oncol 23 Suppl 3: 15-28.

BACKGROUND: In larger parts of the Middle East palliative care is still misunderstood among
health professionals, cancer patients and the public at large. One reason to that is because the
term does not obviously communicate the intent of this clinical discipline, which is lending better
quality of life while combating cancer. Further, culture, tradition and religion have contributed to
this misgiving and confusion especially at the terminal stage of the disease. METHODS: The Middle
East Cancer Consortium jointly with the American Society of Clinical Oncology, the American
Oncology Nursing Society, the San Diego Hospice Center for Palliative Medicine and the Children's
Hospital & Clinics of Minnesota initiated a series of training courses and workshops in the Middle
East to provide updated training to physicians, nurses, social workers and psychologists from
throughout the region with basic concepts of palliative care and pain managements in adults and
children cancers. RESULTS: During the past 6 years hundreds of professionals took part in these
educational and training activities, thereby creating the core of trained caregivers who start to
make the change in their individual countries. CONCLUSIONS: The outcome of consecutive training
activities can overcome geopolitical instabilities, and yield a genuine change in approach of both
regulators, medical administrators, medical staff and the public; as to the important contribution
of palliative care services to the welfare of the patient and his/her family.

Singer, P. A. and K. W. J. B. P. c. Bowman (2002). "Quality end-of-life care: a global perspective." 1(1): 4.

Soto-Perez-de-Celis, E., et al. (2017). "End-of-Life Care in Latin America." J Glob Oncol 3(3): 261-270.

Cancer has become a global pandemic with disproportionately higher mortality rates in low- and
middle- income countries, where a large fraction of patients present in advanced stages and in
need of end-of-life care. Globally, the number of adults needing end-of-life care is greater than 19
million, and up to 78% of these patients are living in low- and middle- income countries. In the
Americas alone, more than one million people are in need of end-of-life care, placing an enormous
burden on local health systems, which are often unprepared to meet the challenge presented by
this complex patient population. In Latin America, cancer care is characterized by the presence of
vast inequalities between and within countries, and the provision of end-of-life care is no
exception. Disparities in access to advanced care planning, with a lack of provision of adequate
palliative care and pain medication, are common in the region. These shortcomings are related in
large part to inadequate or inappropriate legislation, lack of comprehensive national palliative
care plans, insufficient infrastructure, lack of opportunities for clinical training, unreliable
reporting of data, and cultural barriers. This report reviews the current status of end-of-life care

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in Latin America, focusing on identifying existing deficiencies and providing a framework for
improvement.

Stjernsward, J., et al. (2007). "The public health strategy for palliative care." J Pain Symptom Manage 33(5):
486-493.

Surbone, A., et al. (2010). "Psychosocial care for patients and their families is integral to supportive care
in cancer: MASCC position statement." 18(2): 255.

Van Beek, K., et al. (2013). "Comparison of legislation, regulations and national health strategies for
palliative care in seven European countries (Results from the Europall Research Group): a descriptive
study." 13(1): 275.

van der Steen, J. T., et al. (2014). "White paper defining optimal palliative care in older people with
dementia: a Delphi study and recommendations from the European Association for Palliative Care." 28(3):
197-209.

World Health Organisation (2013). "Definition of Palliative Care."

World Health Organization (2002). National cancer control programmes: policies and managerial
guidelines, World Health Organization.

World Health Organization (2017). Definition of Palliative Care. Geneva; 2002.

World Health Organization (2018). "Cancer. PRESS RELEASE N° 263."

Xyrichis, A. and K. J. I. j. o. n. s. Lowton (2008). "What fosters or prevents interprofessional teamworking


in primary and community care? A literature review." 45(1): 140-153.

Zeinah, G. F., et al. (2013). "Middle East experience in palliative care." Am J Hosp Palliat Care 30(1): 94-99.

Palliative Care (PC) is still a relatively new concept in the Middle East (ME). It was first introduced
in Saudi Arabia in 1992 and only recently in countries such as Qatar, Bahrain, and the UAE.
Although the majority of Middle-Eastern countries, including Palestine, Iraq, Oman and Lebanon
are in the capacity building phase, others such as Saudi and Jordan already have localized
provision. In the absence of any of the ME countries approaching integration with the mainstream
service providers, Saudi Arabia and Jordan are currently setting examples of achievement in the
field. There are still countries with little or no known Palliative Care activity (Yemen and Syria).
Political issues, scarcity of resources, and lack of education and awareness seem to be the common
factors restricting the progress of this field in most countries. In order to improve the suboptimal
PC services in the ME, emphasis should be directed toward providing formal education to

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professionals and raising awareness of the public. It is also necessary to put all differences aside
and develop cross-border collaborations, whether through third party organizations such as the
Middle East Cancer Consortium (MECC) or otherwise. This review compiles the available literature
on the history and progress of the field of PC in most ME countries, while pointing out the major
obstacles encountered by the active parties of each country.

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