Educational Needs on Palliative Care for Cancer Patients in Iran: A SWOT Analysis

ABSTRACT

Background:

By acceptance of palliative care as a part of health system of each country and due to increasing prevalence of cancer, special focus on stakeholder’s educational needs is of vital importance so that palliative care services are improved and the quality of life of patients is enhanced. This study was conducted to explore the educational needs of stakeholders of palliative care for cancer patients in Iran.

Methods:

This qualitative study with 20 semi-structured interviews was conducted from August 2016 to February 2017 in Shohadaye Tajrish and Emam Khomeini Hospitals of Tehran. Participants were selected through purposive sampling and included cancer patients and their family caregivers as well as healthcare providers, experts and policy-makers. The data were analyzed through Conventional Content Analysis of Landman and Graneheim using MAXQDA10 software. Statements of each main category of the study were summarized in SWOT categorizes.

Result:

A total of 546 codes were extracted from the analysis of the interviews and four main categories and four subcategories were identified. The four main identified categories included: ”academic education planning”, “workforce education”, “public awareness”, and “patient and caregiver empowerment” that contained our subcategories as follows: “strengths”, “weaknesses”, “opportunities” and “threats” (SWOT).

Conclusion:

Meeting the educational needs of the stakeholders of palliative care requires policy-makers to identify the factors leading to strategies that are based on the use of opportunities, the removal of weaknesses, and coping with the threats to which the organization is faced.

INTRODUCTION

Cancer is the third leading cause of death in Iran.¹ The complexity of cancer treatment and its complications make the patient and his family better perceive the need for holistic care -known as palliative care.² Cancer patients and their caregivers often lack accurate information about the diagnosis, prognosis and complications of their disease or on how to adapt to their new circumstances and receive support services.³ Cancer patients need training on the management of their symptoms and the best means of coping with their disease.⁴ Over the past decades, the World Health Organization has been in favor of a palliative care approach that aims mainly to improve the quality of life in patients with life-threatening diseases such as cancer and has recommended the adoption of this particular type of care as the priority of public health systems in all countries.⁵ People’s lack of access to these services means depriving them of their rights.⁶ One of the three basic steps for establishing this approach to care is to train health care providers while also raising public awareness.⁷

Training has an essential role in the efficacy and continuation of palliative care services,⁸ and its inadequacy has been reported as a challenge to obtaining these services.⁹ Although satisfying the palliative care needs of cancer patients and their caregivers requires training on the standards of palliative care in line with the duties on each distinct field of work,¹⁰ evidence suggests that health employees’ knowledge and training is often inadequate in relation to symptom management and palliative care skills.^11,12 Nurses and physicians feel inadequately trained when they begin working in palliative care centers¹³ and then demand training on the symptom management, communication and psychological counseling.¹⁴ Public awareness about care services is another effective step in providing optimal palliative care, but despite the efforts made to raise the community’s knowledge of palliative care,¹⁵ only 20 countries in the world report a relatively good public awareness about these services.⁵ Raising awareness requires the adoption of strategies at the national level and the integration of palliative care services with national health care.¹⁶

Palliative care is a new approach in Iran and the results of studies reveals inadequate training, lack of awareness and expertise in care providers in relation to palliative services,¹⁷ the patients’ lack of knowledge,¹⁸ and a need for raising awareness at the community.¹⁹ Based on limited studies on the stakeholders’ perceptions about palliative care educational needs for cancer patients, it seems that the existing knowledge in this field is not well expounded.

Models and theories can help the researchers to identify, describe, explain, or predict.²⁰ SWOT is a simple conceptual framework used in this research. SWOT is a powerful and sometimes highly successful technique that can be applied to individuals, groups, teams, and health care organizations. This strategic planning helps the managers to decide whether the main problems to which an organization is faced revolve around a need to revise strategy, a need to improve strategy implementation, or both.²¹

Every country has different views on palliative care as a part of its health system.²² The first step seems to be to interprete the stakeholders’ perceptions in the context of the country’s healthcare system. Therefore, the present study was conducted to explore the educational needs of the stakeholders of the palliative care system for cancer patients in Iran in order to identify suitable training strategies for the system.

MATERIALS AND METHODS

This qualitative research was conducted from August 2016 to February 2017 using the content analysis method. Content analysis is an appropriate method for obtaining valid and reliable results from text data in order to create knowledge, new ideas, and practical guides. This method aims to present a compact and comprehensive description of a phenomenon, with descriptive concepts as the outcome of this analysis.²³ 20 participants were selected through purposive sampling, including cancer patients and their caregivers as well as healthcare providers, experts and policy-makers active in the field of cancer. The patients included in the study were definitely diagnosed with cancer by a specialist and at least six months had passed since their diagnosis; they were undergoing treatment or were in the follow-up stage of their treatment. Patients with other chronic diseases such as diabetes, hormone disorders, renal and mental diseases and those who had any constraints for performing the interventions were excluded from the study. The criteria for admitting family caregivers included direct involvement in taking care of a cancer patient for more than six months. Inclusion criteria for the admission of healthcare providers were more than one year of experience in working with cancer patients. Cancer experts and policy-makers were also among the participants of this study. The present research was carried out at the oncology departments and clinics of Imam Khomeini and Shohada-ye-Tajrish Hospitals and the Cancer Research Center, affiliated to Shahid Beheshti University of Medical Sciences as the main referral centers in the country.

Data were collected using semi-structured interviews and continued until data saturation occurred. The researcher, before the interview, explained about the purpose of the study, confidentiality of information, and recording of interviews. The time and place of interviews were also coordinated with the participants. They were asked to complete the consent form if they wished to participate in the study. Each participant agreed to have her views used and they were ensured that they remain anonymous. The interviews began with a general open-ended question such as “Please talk about when you first learnt about your disease“. “What educational needs did you have then?” (question for the patients).The interviewer, using followup questions, encouraged the patients to express their deeper experiences. Questions like “What do you mean by that?”“What did you feel then?”… …“What were your educational needs for providing care to the patients?” (question for the care providers), and “What are the educational needs of a care system developed for patients?” (question for the policy-makers).

All interviews were audiotaped and transcribed for analysis. Each interview lasted between 30 and 50 minutes on average. The process of data analysis was carried out in accordance with the recommended steps by Graneheim and Lundman.²⁴ Initial codes were extracted. The codes were then merged and classified on the basis of similarities. Finally, for main categories were extracted. Data collection and analysis, using MAXQDA 10 software, were done simultaneously.

The SWOT (Strengths, Weaknesses, Opportunities and Threats) strategic planning analysis was obtained from the results of content analyses of the interviews. Statements of each main category of the study were summarized in SWOT categorizes. Strengths and weaknesses cover internal aspects of the organization educational needs (located in hospital), whereas Opportunities and Threats cover the external environment factors (located out of hospital).

Following analysis, four criteria of Lincoln and Guba were evaluated. To validate the Credibility, the researcher had long-term engagement with the participants to check their experiences and ensure adequate interview time. To investigate the Dependability, the researcher used a combination of data collection methods (field notes) along with external observers. Conformability of the research findings was achieved through recording the participants’ words, writing them down and having them reviewed by the experts and the participants. Along with covering a wide range of participants in terms of age, occupation, and academic status, the researchers also tried to provide an comprehensive, detailed and step-by-step description of the way the research was conducted, to generalize the process for other researchers and contexts and to improve the Transferability of research for providing the ability to transfer the findings for evaluation and judgment by others.²⁵

The ethics approval for the research was obtained from Shahid Beheshti University of Medical Sciences with the code of IR.SBMU.RAM.REC.1395.70.

RESULTS

In this study, the 20 participants consisted of 7 patients with cancer (mean age of 47.58±13.81), and 2 family caregivers (mean age of 41.5±19.09), 6 health care providers and 5 experts and policy-makers (Table 1). Participants’ demographic data indicated that the majority of patients (57%) had passed one to three years after the initial diagnosis and the rest of them (42%) less than one year. The average period of care-giving to the patient was 7 months. The average of the health care providers’ professional experience was 5 years (ranging 2-8 years) and the health policy makers work experience was more than 10 years.

Table 1.

Characteristics of participants

Participants	N (%)
Patients
Gender
Male	3 (15)
Female	4 (20)
Caregivers
Gender
Male	1 (5)
Female	1 (5)
Health care providers
Nurse	2 (10)
General physician	2 (10)
Psychologist	1 (5)
Social worker	1 (5)
Policy makers
Surgeon	1 (5)
Health policy maker	1 (5)
Cancer Epidemiologist	1 (5)
Nursing faculty member	1 (5)
Insurance officer	1 (5)
Total	20 (100)

After continuous analyzing and comparing 546 extracted codes, four main categories and four subcategories were identified. The main categories included” academic education planning”, “workforce training”, “public awareness” and “patient and caregiver empowerment” and four subcategories as follows: “strengths”, “weaknesses”, “opportunities” and “threats” (Table 2).

Table 2.

Summary of the statements of the SWOT analysis based on four categories

Main category
Academic education planning	Strengths	Weaknesses
	The presence of students of medicine and nursing and related disciplines in healthcare centers	The lack of standard educational content in universities
	Healthcare managers’ further prioritization of educational programs	The lack of familiarity in students of medicine and nursing and related disciplines with the basic principles of palliative care
	The high capacity of universities and healthcare centers for research	The limited number of studies on the educational needs of the stakeholders of palliative care
		The scarcity of academic conferences and rounds held at healthcare centers with the involvement of relevant disciplines
	Opportunities	Threats
	The emphasis placed by authorities at the Ministry of Health on the development of a palliative care program	The lack of a systematic palliative care curriculum in different disciplines
	The presence of several science associations and publications in the field of cancer	The shortage of palliative care experts for training the target groups
	The availability of international models, including WHO models	The lack of a practical education program for the students of different cancer-related disciplines
	The availability of NGOs for supporting education programs on palliative care
	The availability of IT systems for setting up virtual classes
	The appropriate infrastructures in place and the capacity of universities and schools
Workforce Training	Strengths	Weaknesses
	The presence of different disciplines in healthcare centers	The lack of interdisciplinary team management in healthcare centers
	The motivation in nurses, social workers, psychologists and experts of different disciplines for providing effective care	The shortage of nurses, social workers, psychologists and experts of different disciplines who are familiar with palliative care
Workforce Training	Strengths	Weaknesses
		The lack of ongoing educational programs for workers active in cancer-related fields
		The disparity between the patients’ information needs and the services provided
		Medical teams’ insufficient attention to the patients’ customs, beliefs and culture
		Medical personnel’s inadequate communication skills
	Opportunities	Threats
	The presence of GPs and nurses in the private sector for entering the palliative care system	any threats
	Using international education opportunities for training people on palliative care
Public Awareness	Strengths	Weaknesses
	The potentials of universities and healthcare centers for raising public awareness	People’s lack of familiarity with the concept of palliative care
	The availability of reliable sources of information at healthcare centers	The stigma of cancer
	Opportunities	Threats
	People’s increased knowledge about the variety of advanced care services available	The contradictory health information available
	People’s desire to receive information from reliable information	The overload of health messages
	Community’s general tendency to make plans for the future	Poor access to the internet and educational resources
	The involvement of public and private organizations and NGOs in raising public awareness
	The numerous sources of information available, such as the internet and distant learning tools
Patient and Caregiver Empowerment	Strengths	Weaknesses
	The scarcity of patient education programs	The lack of guidelines for providing patient education
	Patients’ desire to be independent in the care they receive	The discontinuity in patient education
	Patients’ and caregivers’ desire to learn the details of home care	The lack of specific educational programs for caregivers
	People’s empathy for learning and teaching
	The knowledge of nurses and other healthcare personnel about the principles of patient education
	Opportunities	Threats
	Teaching self-care to patients and their caregivers	Receiving wrong information about the disease from different sources
	The presence of community volunteers to teach self-care	The absence of means of communication with the relevant healthcare centers

Academic Education Planning

Given the importance of academic education for training a workforce with expertise in palliative care, the participants noted the need for education planning in the higher education system for enhancing the knowledge and expertise of healthcare providers in this field.

Strengths: The participants considered the presence of students in nursing, medicine and various other fields as the strength of the health care providing organization: “The presence of nursing, medical and even psychology students in teaching hospitals is good for training the patients and it benefits both the patient and the medical center” (Women, nurse, 5y experience).

Since research has a major role in meeting the educational needs of the health care system, the participants considered it a strength for improving academic education in the field of palliative care. “Becoming an efficient educational and competent expert is not possible without scientific research. The high capacity of healthcare centers and universities for research can help meet the existing educational needs” (Man, physician, 8year experience).

Weaknesses: The participants noted the absence of a standard educational content for palliative care at universities and the lack of familiarity with the basic principles of palliative care in the students of nursing and medical and related disciplines. “We need specific cancer-related content in universities. At least in undergraduate courses, it is necessary to have a standard educational content in related disciplines”. (Women, Faculty member, 18year experience)

Participants also noted the shortage of studies in this area as a weakness: “The research activities of academics are highly important in improving education in this care system; yet, we have deficiencies in this area” (Cancer epidemiologist, 25year experience).

Opportunities: The emphasis of the authorities at the Ministry of Health on the importance and precedence of palliative care and the presence of multiple cancer associations and research centers were discussed by the participants as opportunities for academic education. A cancer policy-maker said: “Currently, discussions are under way between policy-makers and the ministry about launching a palliative care system, and important conferences are being held. The capacity of cancer associations and research centers and related schools and universities can be utilized and these centers should receive further support”. (Man, 30year experience)

The increasing advances in technology and universities’ increased access to them and the use of modern educational methods play a major role in advancing education.

Threats: The lack of approved palliative care curricula in different cancer-related disciplines was regarded as one of the most important threats in academic education. “I believe that cancer should be included in educational curricula and taught as a non-communicable disease.I think that it should be included in the curricula, but more comprehensively in the form of a specialized discipline such as an MSc or a PhD or as a complementary course”(A Ministry of Health policymaker, 25year experience). Since patient health care services are provided in different palliative care settings and given the lack of a structure for providing palliative and supportive care in Iran, one of the threats to academic education planning was discussed as the failure to offera practical educational program to the students of cancer-related disciplines.

Workforce Training

The participants emphasized the importance of providing human resources training in palliative care as an ongoing and multidisciplinary educational program in order to create and strengthen the various skills needed for providing these services and regarded such training as one of the most important educational needs in this field.

Strengths: The presence of different disciplines across medical centers and fostering motivation in nurses, social workers, psychologists and nutritionists to learn how to provide effective services are some of the strengths of informal workforce training. “The nature of cancer is such that people involved with patients are usually motivated and willing to provide services” (Women, social worker, 7 year experience).

Weaknesses: The participants discussed the shortage of workforce familiar with palliative care in the healthcare system as a weakness in this area. The participants also discussed the lack of multidisciplinary team management in healthcare centers and the absence of ongoing training programs for cancer-related disciplines. “The complex nature of cancer necessitates a comprehensive care team for cancer. The care team should see all the aspects of the patient and the disease, not just the disease, but also its psychological and social dimensions and the coordination between them” (Man, cancer policy-maker, 18year experience). The disparity between the patients’ educational needs and the services provided, the inadequate attention of medical teams to the patients’ beliefs, culture and tradition and the medical personnel’s poor communication skills were identified as the weaknesses of informal workforce training. A psychologist noted: “Patients come from different cultural backgrounds and the workforce lacks the necessary skills and understanding for communicating with these patients and their families”. (Women, 5 year experience).

Opportunities: The availability of private-sector GPs and nurses for entering the palliative care system and the access to international palliative care training are considered as the opportunities for workforce training. A policymaker discussed the support given by nurses and physicians to this system: “Using the capacity of nurses and GPs and their entry into the palliative care system are the key factors in the development of palliative care training and these forces are a major contribution to meeting the community’s care needs”. (Man, 12 year experience)

Training human resources is possible through different methods. A physician with 8 years of experience in cancer field said: “Undoubtedly, this newly-emerged care system needs to take advantage of international training in this field in order to meet its training needs. Inviting experts from abroad to train the workforce in Iran followed by the local training of a larger workforce are essential to the development of a palliative care system in the country”.

Threats: Participants’ statements did not lead to the identification of any threats in this category.

Public Awareness

Public awareness about palliative care and the communication of information to the community are important indicators in the study of palliative care systems. This category refers to the public awareness about the social rights of cancer patients, introduction to institutions and organizations associated with cancer and the communication of information and public education about the early detection of different types of cancer.

Strengths: The potentials of universities and healthcare centers for raising public awareness and the valid information sources available in these centers were extracted as the strengths of this category. A physician commented: “Universities are reputable organizations that provide palliative care education at the community level”. (Man, 8 year experience)

Weaknesses: The weaknesses identified by the participants included people’s lack of familiarity with the concept of palliative care and the stigma of cancer. “Not many people know about the services offered by the health care system, and since they have wrong ideas about cancer, they think cancer care is merely about end-of-life services” (Women, nurse, 3 year experience).

Opportunity: The participants noted increased public knowledge about advanced care, people’s desire for reputable sources of information and the community’s willingness for future planning. A caregiver said: “People follow healthy living standards nowadays and like to plan for their future, so their knowledge has improved by the wealth of information available about advanced medical care; they also seek reliable sources”. A physician discussed the involvement of public and private organizations and institutions and NGOs in raising public awareness as an opportunity: “Healthy living can be promoted through public education with the participation of public and private organizations and institutions and NGOs, such as municipalities, universities and charities”. (man. 5 year experience)

Various sources of information exist that can be considered as opportunities for raising community awareness about care services, including the internet and distant learning programs.

Threats: The participants noted the health system’s poor capacity for providing health-related education: “It is obviously not only hospitals and universities that are responsible for educating people and meeting the public information needs” (a social worker). In certain cases, too much information can lead to public anxiety. The participants discussed the overload of health messages in the community: “The multiplicity of information has led to information overload and people don’t know ifit is necessary or not to know about it” (a physician). In addition to this information overload, the participants also discussed the importance of receiving accurate information of top-notch quality: “Receiving a mixture of correct and incorrect information and the quality of this information can confuse the information users” (Women, caregiver, 28years old).

The participants noted the health system’s poor capacity for providing health-related education. In certain cases, too much information can lead to public anxiety. They discussed the overload of health messages in the community. In addition to this information overload, the participants also discussed the importance of receiving accurate information of top-notch quality. “Receiving a mixture of correct and incorrect information and the quality of this information can confuse information users”(Women, patient, 38 years old).

Patient and Caregiver Empowerment

One of the educational needs discussed by the stakeholders was the involvement of not only the patients, but also the caregivers as the most important sources of care for the patient; according to the participants, attention to the educational needs of the patients and their families and its continuation is one of the factors affecting their empowerment.

Strengths: The participants noted the desire that patients and caregivers have for being autonomous in care and having access to home care. “I like to rely less on my relatives for taking care of myself. For example, I do not need them that much for dressing my wounds after the surgery and knowing the side-effects of the medications.I like manage everything by myself when I go home” (Man, patient, 55 years old). The nurses’ knowledge of the principles of patient training was also proposed as a strength.

Weakness: The participants noted the lack of an educational content designed specifically based on the type of diagnosis made and the absence of educational guidelines in healthcare centers as weaknesses. “The theoretical teachings about the disease were general. It is good for the nurses to have access to the same sources so that they can train each patient according to his/her disease and based on a specific standards”(Women, nurse, 8year experience). The lack of patient education programs, especially at the onset of the disease, and the discontinuity of the education programs offered were some of the concerns discussed by the patients and caregivers. “I needed a lot of training, especially at the beginning of my treatment. When we accept the treatment conditions, the patient and his family then need instructional classes, but we didn’t receive such extensive education back then” (Man, patient, 48 years old)

Opportunity: The participants noted the role of volunteers in empowering the patients and their families: “Volunteers from charity institutions provide different services to cancer patients and their families” (Man, physician, 5year experience). Training is very important to palliative care. A cancer policy-maker noted the importance of home care training and said: “Home care provides the greatest chance for patient training, especially when accompanied by outpatient support services offered in specialized departments”. Given the importance of home care and the care needs of cancer patients and their families, this group’s desire for home care offers a good opportunity for the empowerment of patients and their families. A caregiver commented: “Treatment is a long term process for the cancer patient who happens to be in great need of training, too. It is best to offer this training at the patient’s home”. (Women, 55years old)

Threats: The participants noted the lack of access to reliable information as a threat. One of the patients said: “Now that a few months have gone by since I was diagnosed with the disease, I find that I have gathered a lot of information about my disease from people and different websites and some have not even been correct”(women, patient, 32y). Despite the availability of various means of gathering information, the participants were more inclined to receive 100% accurate information from the healthcare centers they visited rather than from elsewhere: “I’ll be discharged from the hospital after getting my supply of medications, but I worry about the problems I might face at home and I wondered who should answer my questions. It would be really good if I could contact the hospital ward and the nurses” (Women, a patient, 45y).

DISCUSSION

The present study was conducted to explain the educational needs of the stakeholders of the palliative care system for cancer patients in Iran. The educational needs of stakeholders in a health care system are the basis of all educational planning in palliative care. Accordingly, these needs in the nascent palliative care system of Iran must be understood, analyzed and reviewed. The results of the study led to the identification of “academic educational planning”, “workforce education”, “raising public awareness”, and “patient and caregiver empowerment” as the educational needs of palliative care in Iran. At the first glance, these needs are considered as something general which is common in all palliative care systems around the world although their analysis as advantages and deficiencies, and threats and opportunities, demonstrated the obvious differences between Iran and other countries in managing these needs, which consequently leads to different micro- and macro-educational planning in palliative care system of the country.

The high capacity of medical universities and departments for education and research, and the presence of multi educational cancer therapy centers in the country²⁶ with their instructors and students of cancer-related disciplines and healthcare personnel were considered the strengths in this study. In this regard, the Ministry of Health authorities’ emphasis on establishing a palliative care plan regarding international models is suggested. In contrast, participants referred to the lack of a palliative care curriculum, lack of an appropriate educational content, lack of familiarity with basic principles of palliative care in students of cancer-related disciplines and healthcare personnel, and also lack of public awareness about these services as deficiencies and threats.

One of the most important infrastructures is the awareness and support of the policy-makers at the macro-level planning. In recent years, due to the increase in cancer rate in Iran, the development of a national supportive and palliative care program for cancer has become the priority of the Ministry of Health’s agenda. In addition, the fourth step in the national healthcare system reform plan is reform in the medical education provided by this ministry.²⁷ Therefore, according to the recommendations of the minister of health regarding reforms in the medical education system and using international models,²⁸ this opportunity can best be used to develop national strategies for palliative care education to train different groups including students of cancer-related disciplines, healthcare providers and the community. In some countries, palliative care has been accepted by health ministry as an academic major and discipline,²⁹ and designing disciplines related to palliative care in nursing at the MS level and professional training courses along with clinical experiences are especially recommended.³⁰ Domestic studies have revealed healthcare providers’ inadequate knowledge of palliative care and its underlying philosophy, inadequate knowledge of symptom management and the means of providing care and also the limited number of active groups in this field in Iran.^17,31 Another study regarded the inadequate training given to healthcare providers, especially the physicians and the nurses, as an educational barrier in the provision of palliative care services.^14,32 As for public education, in order to improve the community’s knowledge of palliative care services, while conducting researches on people’s level of knowledge and effective ways to increase it, it is recommended that some guidelines should be designed to introduce the concept of palliative care to the community. Moreover, the integration of palliative care services into the healthcare system and the development of national strategies in relation to these services can also help increase public awareness to a great extent.¹⁵

“Academic education planning” was one of the main categories of this study in line with the WHO perspective, which regards academic education of specialists and students in the palliative care system as one of the main components of the public health model. The stakeholders interviewed in this study referred to the importance of a separate palliative care curriculum, an educational content associated with cancer-related disciplines and research as the academic needs of the palliative care system. Palliative care education is currently considered important and is essentially integrated into the curriculum of medical students at a global level.³³ In line with the present findings, various studies have also argued that this course is necessary to be offered, especially in nursing, and that the lack of an appropriate educational content in this field is considered as an educational challenge.^17,31,34 Research is also a key indicator in the assessment of palliative care systems. In recent years, the number of articles published on palliative care in Iran has been increasing, which has led to effective progress in identifying the barriers to palliative care education as a result.³¹

The participants also noted the shortage of trained professionals and “workforce education” as a separate category in this study. One of the unique features of palliative care is multidisciplinary approach and team-based working.³⁵ The lack of specialized and team management in healthcare centers was noted by the participants as a weakness. In line with present findings, other studies have also reported poor teamwork in providing palliative care services.¹⁷ A measure taken in Iran in response to this need involves the development of an interdisciplinary palliative care curriculum that includes the situation analysis and needs-assessment of cancer patients and professional employees.³⁶

Raising public awareness on palliative care has been one of the recommendations of the WHO. The lack of public awareness and public attention to information sources was particularly important to the stakeholders and is regarded as raising public awareness category. Although the public attitude toward palliative and end-of-life care is complex and vague,³⁷ changing the attitude toward palliative care is essential in enhancing the existing knowledge and achieving the care goals as well as enabling the community’s participation in palliative and end-of-life care.³⁸ As discussed in this study and similar studies, cancer and its related services remind the patients and even nursing personnel of death and end-of-life services. Also, poor understanding of healthcare providers, patient and their families’ wrong ideas about this concept were reported as an educational barrier in proposing such services.^18,39 Itis possible to overcome this barrier by offering reliable education, based on beneficiaries’ needs and also organizing the available educational resources.

The final category extracted in this study was “patient and caregiver empowerment” Educating the patients and caregivers mostly results in their empowerment, which is important when this education begins from the time of admission and continues after discharge. According to the interviewed patients, family members are the most qualified people to play the role of caregivers and many patients prefer to receive certain care services at home if possible. In line with the result of the present study, in another research, the patients’ willingness to be provided with care by their family members at home was considered as an opportunity although taking full advantage of this opportunity requires special training, and these countries are definitely more advanced in the provision of home care services.⁴⁰ Disruption in educational services was a deficiency, noted out by the participants of this study. This finding is consistent with those of similar studies conducted in Iran and other communities^41,42 regarding the lack of ongoing educational programs offered by relevant healthcare organizations for the empowerment of chronic patients and their caregivers. Considering the willingness projected by the patients and families examined in this study to be independent in the care they receive and give, the first step to take is to train healthcare providers, especially volunteer forces, on the principles of care and education so that they can later train their patients from the time of their admission to their discharge; these efforts can better succeed if the success stories of other countries in the establishment of home care services are also utilized.

The current study is one of the few researchers that deal with exploring educational needs of palliative care stakeholders in Iran. Palliative care is a new discipline in Iran and understanding the mentioned needs would be the basis for further research in this field; however, obtaining extensive information about these needs may require a quantitative needs-assessment. It is noteworthy that the current study is qualitative and has been conducted on a small number of participants, thus being of narrow generalizability. Future studies are recommended to separately assess the educational needs of healthcare providers and the students of different medical disciplines at various levels and to also identify the factors contributing to the public knowledge, awareness and attitude about palliative care.

CONCLUSION

While teaching the palliative care approach to patients, their families, the healthcare personnel and the community that improves the quality of life in cancer patients, governments face numerous challenges; however, considering the fact that in the current century, palliative care appears to be an essential part of the health system in any country, offering specialized and general education, proposing proper educational models in universities and training healthcare personnel need to be considered by policy-makers as priorities in developing a healthcare system, in order to meet the educational needs of the stakeholders of palliative care, integrate the palliative care into healthcare system, and raise awareness of the community by using public media, community volunteers, schools and public centers.