Challenges on the Provision of Palliative Care Services of Cancer Patient in Palestine:

A Mixed-Methods Study

1
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 notably 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). The 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 the 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

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

2
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

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

3
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 the 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.

4
Project objectives

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

provision of 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 fulfill this purpose, several aims were set-up including

the following:

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

regarding palliative care;

2) To identify and address palliative care needs experiencing from cancer patients’;

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

Strip;

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

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

model’ of bringing into introducing stage; and

5) 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 to 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 a

practical environment?

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The 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 the

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

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 Professor Dr. Alexander Molasiotis and his research interests regarding cancer

7
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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 Figure 1.1 Overview of the Study

Aim: To address the challenges or barriers associated with the provision of palliative care services in the Gaza Strip and to draw upon these findings
to develop policy recommendations

To assess healthcare providers To identify and address palliative To assess the readiness and To explore the perspectives of the
(nurses and physicians) care needs experiencing from availability of Palliative Care Ministry of Health policy makers
Objectives knowledge, attitudes, and cancer patients' services in the oncology with regards to challenges on the
perception regarding palliative department at Gaza Hospitals provision of palliative care
care services and identifying examples
of ‘good model’ of bringing into
introducing stage

Survey Phase One Interviews (FG)

Methods (Stage 1) (Stage 2)
-------------------------------
Sequential Explanatory Mixed Methods Design

Phase Two Interviews (Key

------------------- informant)

Outputs

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Definition and Development of the Concept of Palliative Care

England witnessed in the 1960s a meaningful distribution pertaining to 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 the 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 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 European Association for Palliative care (EAPC) describes palliative care as comprehensive

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

10
psychologically and existentially, in particular when looking after the 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 specialties. (National Board of Health, 2011). In the UK, palliative treatment

was green-lighted as a sub-specialty 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 world. The European guidelines (Radbruch and Payne

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 an inseparable

part of palliative care since it includes at least two members of healthcare (Xyrichis and Lowton

2008). The main job for the 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

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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, the 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 organization and the use of resources in the hospital, but there is only

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

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). The life-threatening patients vary 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).

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 government 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 were 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

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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 neighbor-------------- that is under a palliative care strategy which

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

Cancer and the Palestinian Health Care System

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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 2.2 million (PCBs 2013); recent reports indicate that

the GS is among the most densely populated areas on earth. The report of the Palestinian Ministry

of Health (MOH) indicates that there is an increasing trend of oncology-related diseases among

Gazan people.

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 was 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, a high

indirect cost in loss of productivity, and a lot of societal stress.

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The latest cancer report shows the total number of registered cancer cases during 2009-2014 was

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% of 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 an incidence rate of 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; its provide Primary Health

Care (PHC), secondary and tertiary services almost for the whole population. It purchases advanced

medical services by 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 the 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

healthcare human resources and inadequate staffing, an inappropriate infrastructure of oncology

buildings and deficiencies in necessary equipment and supplies. Services are limited to some

16
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 are 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 health 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

17
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 a greater cost, using inappropriate substitute

medications, and by seeking treatment abroad. All 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.

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 a 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 the perception of an individual to their life, values, objectives,

standards, and interests in the framework of culture (WHO, 1997).

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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, a 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

19
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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Research Methodology:

1. Study Design

A 2‐phase sequential mixed‐methods design with a quantitative phase followed by a qualitative

phase will be undertaken to answer the research questions. Stage one which is included two phases;

phase (1): will be involved in a cross‐sectional survey. In this phase, a pilot-tested instrument will

be developed for this research will be administered to a population sample of cancer patients and

healthcare providers to explore palliative care needs from cancer patients’ perspectives and to

assess healthcare providers knowledge, attitudes, and perception regarding palliative care. Phase

(2) will be involved a focus group interviews which will focus on perspectives of healthcare

providers to the current challenges or barriers on the provision of palliative care services and

suggested solution for overcoming these barriers. This second phase will have the main objective

which is to identify opinion on the issues involved in providing PC services to this population of

cancer patients. Stage two of the study was concerned with the perspective of experts. This second

phase will be involved in the collection of qualitative data from an expert panel of health service

providers to provide recommendation and opinion of overcoming barriers.

Choice of Mixed Methods Design

The overall objectives of the study could best be achieved by adopting a dual focus which

comprehensively considered the perspectives and experiences of both patients, healthcare

providers, and policymakers. In this respect, the study needed to acquire information that was both

circumstantial and experiential and situated both at the level of service users and service providers.

Additionally, in order that a comprehensive exploration could be undertaken, the study required

the collection of both quantitative and qualitative data. No single research method or design could

be found which would comprehensively address all the study's research questions, consequently, a

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mixed methods approach was chosen on the basis that each method functions as a tool that is

calibrated to answer specific research questions, but not others.

The mixed-method approach used for this research will provide an opportunity to study a multitude

of variables associated with palliative care, from both a patients and healthcare providers

perspective that would otherwise be overlooked using a more traditional methodological approach

(Mertens 2014). Caracelli and Greene (1993) describe a category of mixed methods research as

conducting analyses separately, and then engaging in the integration of findings during the

interpretation phase of the research: this study is an example of this methodological approach, in

that quantitative and qualitative data from this study will be analyzed and reported separately, but

the results from each were considered together in the discussion of the study findings.

Each method used in this study was chosen based on its ability to address the research objectives

and aspects of the study. Consequently, confining the study to only one method would have

severely curtailed its ability to comprehensively address all the questions. The use of a mixed

methods approach is a unique contribution of this study in the context of previous research in this

area. By using mixed methods, the analysis can contribute to an increasingly dimensional picture

of the challenges on the provision of palliative care to cancer patients.

The Mixed Methods Design of the Current Study

As previously outlined, this study proceeded in two phases. Phase One was concerned with the

cancer patients and healthcare providers collected data from a survey (Stage One) and interviews

with healthcare providers (Stage Two). This phase employed a sequential explanatory mixed

methods design. Phase Two of the study was concerned with the perspective of experts (head of

oncology departments and stakeholders). This second phase will be utilized a Delphi design and

will be involved in the collection of both qualitative and quantitative data from an expert panel of

22
health service providers. The following section will provide an overview of the design for each

phase.

Phase One: Sequential Explanatory Mixed Methods Design

A cross‐sectional survey will be used in this phase of the study to identify palliative care needs for

cancer patient’s perspectives and to assess healthcare providers knowledge, attitudes, and

perception regarding palliative care. Survey research is the most dominant form of research in

social sciences, as it provides for the efficient collection of data over broad populations (Dillman

2011). The instrument developed for this research was an attitude scale, as this is one established

method of asking participants about value, beliefs, and opinions (Ajzen 2002).

Instrument development

The development of instrument used in this research will base upon (Rogers 1995) Diffusion of

innovation theory. As reported in the literature review, there were several themes identified the

potentially present both facilitators and barriers to palliative care provision at cancer settings-thus,

the literature informed the content, and the theoretical framework the structure of the instrument.

Utilizing surveys to study diffusion theory has become increasingly popular, and this is because

previously the individual was usually unit of analysis, yet a number of studies have been conducted

in which individual's perception of their organization is the unit of analysis (Wildemuth 1992).

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Study population

The study will include three groups of participants. The first group will include adult cancer

patients who were registered at the Cancer Registry between 2012 and 2016, which accounts for

7767 patients (MOH, 2016).

Table (1) Distribution of new cancer patients in the GS between 2015-2016

Years Male Female Total

2012 507 724 1231
2013 929 775 1704
2014 721 781 1502
2015 734 894 1628
2016 744 958 1702
Total 3635 4132 7767

The second group will include healthcare providers’ (nurses and physicians) who are working at

oncology centers at Shifa Hospital and the European Gaza Hospital, which accounts for 153

providers (Table 2). The third group will include specialized cancer service providers and

policymakers who are working at Palestinian Ministry of Health which account 17 persons.

Table (2) Distribution of healthcare providers working at oncology centers

Healthcare providers
Settings Nurses Physicians Total
Hospital Inpatients Outpatient
European Gaza 33 8 10 51
Al-Shifa 60 20 22 102
Total 93 28 32 153

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Sampling process

To determine the adequate sample size; acceptable level of significance, a power of the study,

expected effect size, underlying event rate in the population, and standard deviation in the

population must be defined clearly (Kirby, Gebski et al. 2002). However, power analysis formulas

used when the quantitative study is experimental (Lipsey, 1990). In this study, the researcher will

be used sampling error formulas for identifying the appropriate size for the sample (Fowler, 1988)

because the quantitative design is based on survey.

The sample size for the quantitative strand was calculated based on the total population of cancer

patients who were registered at the Cancer Registry of Ministry of Health from 2012 to 2016 was

approximately 7767 patients (MOH, 2016). The margin of error was set at five percent with a

confidence level of 95 percent. Therefore, the sample size calculation revealed that the sample

required should be at least 338 participants. The researcher increased the sample to 350 to

compensate non-respondents and to increase statistical power that will be randomly selected from

the Cancer Registry database to be included in the study.

For health care providers, all cancer service healthcare provider who working at cancer centers at

both hospitals will be included in the study153 providers (Table 2). In addition, all specialized

cancer service providers and policymakers will be included which account 17 persons; Deputy

Minister of Health in Gaza (n=1), and Head of Cancer Register Office (n=1), oncologists (n= 8),

specialized nurses (n=7).

25
Eligibility criteria.

(1) Inclusion criteria for patients: Adult aged at least 18 years, diagnosed with cancer,

registered at the Cancer Registry of the Gaza Strip, treated at one of both hospitals, and

mentally able to complete the study survey.

(2) Inclusion criteria for healthcare providers: Providers who are working at two oncology

centers; Al-Shifa Hospital and EGH.

(1) Exclusion criteria for patients: Patients 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.

(3) Exclusion criteria for healthcare providers: Providers who are directly involved in the

supervision of this research study, or data collection from patients.

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):

1- Healthcare providers related instruments:

a) Healthcare providers related characteristics: The questionnaire apart from the socio-

demographic profile of respondents had sections about the definition of palliative care, its

philosophy, communication issues, non-pain symptoms of palliative care, medication use

26
 in palliative care, and context of an application. All questions or statements were close

ended with three options (Yes, No, and Don't Know). Hard copies of the questionnaires

were distributed to the healthcare providers through daily work in the hospital and those

completed and returned within the time frame of one week will be used for data analysis.

b) KAP questionnaire: It includes six sections: general information on specialty area (5

questions); perceptions and knowledge (10 questions) measured by yes and no; attitudes

(15 questions), practices and perceptions of practices (12 questions), and needs assessment

for palliative care services (8 questions). Each section was measured using a 5-item Likert

scale ranging from strongly agree (5) to strongly disagree (0). (Abu-Saad Huijer and

Dimassi 2007). The study instrument (questionnaire) was adapted from one used in a

previous study.

2- Patients related instruments:

a) Patients 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, 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.

Qualitative data collection:

1- Four focus group interviews will be used in this study, each with 8 participants. Two groups will

be conducted in each hospital; one group of nurses and one of the physicians. A purposive sample

of 32 healthcare providers will be recruited for gaining a highly rich-information and this sampling

method is the common in qualitative research (Cohen, Manion et al. 2002). The participants will

27
be consisted of mixed groups of junior and senior providers. A semi-structured interview will be

conducted to gain information from the providers. An interview guide will be developed after

collecting and analyzing the quantitative data of the study and after reviewing the literature on the

provision of palliative care. The interview will be covered theme related to provider perception of

palliative care and the challenges on the provision of palliative care, and their suggestions for

integrating palliative care in the health system. Focus group interview will be conducted by the

researcher, with eight study participants in each focus group. Moderator will be assisted in this

study; she will present in each focus group to help in an arrangement, invited the participants to be

more exciting and to record any non-verbal cues of the participants. To provide a quiet, suitable

and appropriate environment of participants, continuous education hall will be booking in each

hospital. Each session will be lasted approximately 45 minutes. Basic demographic and clinical

data of the participants will be also obtained. The interviews will be audiotaped and transcribed

verbatim by the researcher and moderator.

2-Key informant interviews with all specialized and trained providers (n=17); Deputy Minister of

Health in Gaza (n=1), and Head of Cancer Register Office (n=1), oncologists (n= 8), specialized

nurses (n=7). Key informant interviews will be conducted after preliminary analysis of both

quantitative and focus group analysis to obtain informed opinions on ways in which palliative care

can be integrated and how we can mitigate the obstacles arise.

28
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

Transcripts of focus group and key informant interviews will be analyzed using NVivo 10 software,

based on the thematic analysis (Braun, Clarke et al. 2014). The researcher will be obtained 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 PolyU, under the auspices

of the supervising mentor, Professor Dr. Molasiotis.

Ethical and Administrative Considerations

Ethical clearance will be obtained from the research ethics committee at the Hong Kong

Polytechnic University (PolyU XXXXXXXXXX), and an administrative agreement will be

obtained from the Palestinian Ministry of Health-Gaza. Prior to giving verbal consent, every

participant will be informed of their right to anonymity and confidentiality. They will be informed

that they could withdraw from the research process at any time. Participants will be provided with

29
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. Finally,

participants will be received feedback on completion of the study.

30
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