Palliative care clinical nurse specialists play an important role in specialist palliative care. Nurses perceive palliative care to be the most stressing facet of nursing. This is because it is emotionally draining to see a patient experience immense pain due to the inevitability of their death. Despite the view that palliative care is emotionally straining, it improves the quality of life of patients with terminal illnesses, such as cancer. This form of care also assists families of patients diagnosed with life-threatening ailments or organ failures. This is because palliative care involves early identification, and impeccable evaluation and curing of physical and emotional pain associated with chronic diseases.
Aim of the study: The purpose of this study was to assess nurses’ knowledge, attitude and practices about palliative care, determine the effect of the training program about palliative care on quality of nursing care and Identify factors affecting quality of nurses’ preparedness to practice palliative care in oncology units at King Abdullah specialized children hospital in Riyadh, Saudi Arabia
Subjects and methods: cross sectional study was used for conducting the study, A convenience sample nursing were included from five oncology units
Data collected through; demographic characteristic and PC knowledge and attitude .
Everyone is mortal; hence, death is an inevitable phenomenon that affects every person across the globe. Nurses play a critical role in the beginning and ending of individuals’ lives as they are present at birth and dying moments. Many nurses play a vital role in caring for individuals who are in their final days on the world. As such, nurses perceive palliative care to be the most stressing facet of nursing. This is because it is emotionally draining to see a patient experience immense pain due to the inevitability of their death. Despite the view that palliative care is emotionally straining, it improves the quality of life of patients with terminal illnesses, such as cancer. This form of care also assists families of patients diagnosed with life-threatening ailments or organ failures. This is because palliative care involves early identification, and impeccable evaluation and curing of physical and emotional pain associated with chronic diseases. Consequently, most nations, including Saudi Arabia, have integrated this care model into their healthcare settings to help individuals who are close to death.
Saudi Arabia has been transforming its palliative care to meet the needs of individuals suffering from terminal illness. Palliative care began in Saudi Arabia at the King Faisal Specialist Hospital and Research Centre (KFSH&RC) over two decades ago. Its popularity has grown rapidly due to an increase in the number of individuals experiencing terminal illnesses, especially cancer. The survey undertaken by the Saudi Cancer Registry discovered that the nation recorded 11,946 cases of cancer in 2008(Alshammary et al., 2014). By 2030, cancer cases in Saudi Arabia are expected to grow by 5 to 10 times. The prediction is driven by changes in the nation’s demographics, as the elderly and middle-aged will be the most affected by the chronic condition. At the same time, survival rates of cancer in Saudi Arabia and across the Eastern Mediterranean region are relatively lower than in Europe and United States (Fadhil, Lyons & Payne, 2017). This is because cancer in this region is diagnosed while in its late stage; hence, it cannot be cured. As such, palliative care becomes the only solution for most cancer patients in the Eastern Mediterranean region.
Despite the crucial role of palliative care in caring for patients with terminal illnesses in the Eastern Mediterranean region, it remains inconsistent and patchy. Several factors have contributed to this challenge, including insufficient education on palliative care among healthcare professionals especially for nurses and limited access to pain management medicines. As such, the residents of Saudi Arabia do not have sufficient access to palliative care despite the increased cases of terminal illness (Abudari et al., 2014). The outlook implies that there is a need to reform national healthcare policies to integrate this form of care into the nation’s medical systems.
It is evident that palliative care is yet to be fully felt across Saudi Arabia despite being the only quality solution to most patients suffering from terminal illnesses. The condition has been driven by ineffective policies that have limited access to opioids, which are critical to palliative care. Painkillers enhance the quality of lives of people close to death due to the absence of better alternatives. These medications help in pain management as chronic conditions come with intense agony. Therefore, there is a need for the Saudi government, through the Ministry of Health to initiate policies that will improve the quality and accessibility of palliative care.
Any terminal illness or any chronic illness leaves permanent scars on your mind, body, and soul. Those patients who suffer from such illness, they become emotionally distressed, they get panic attacks, they fear happiness and are always found in depression. The need to fight the illness is more powerful than the medicine itself. Nurses are someone who can help in the advance care programs as they are prepared to deal with situations where a patient needs to stay active to live, cope and act positively upon the treatment they are receiving. (Agarwal & Epstein, 2018).
Palliative care is defined by the World Health Organization as an approach to improve the quality of life of patients and their families facing problems resultant from an incurable disease with limited prognosis, or a serious illness (life-threatening) through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”(WHO, 2010).
To understand this situation which is about taking care of patients with a terminal illness, one needs to have complete knowledge about palliative care. A palliative care is treated like a field in which patients with chronic illness are given special care so they don’t get de-morale and maintain their journey back to health in an effective manner. The purpose of palliative care is to provide the high intensified care which is not normally given to normal patients. Palliative care goals are much more than comfort in dying and focusing on relief from physical and psychological suffering, provide psychological and spiritual care and support family by rehabilitate the individual’s (Lugton, 2009)(Grey, Ezzat, Volker, 2019).
The need for palliative care rose when in West, such cases started to surface where terminal illness-ridden patients were able to fight back and gain supreme health, better than before. When such cases were publically acknowledged, different schools of thought began to question the way of treatment of such patients. They dug deep into the issue and found that when a patient has no will to live, or he is too depressed to simply even think about living, he or she will definitely not work on the healthy progress. Moreover, the role of such nurses came forward who were assigned themselves to such patients and took upon them themselves to provide all necessary care and protection and warmth and affection that one can need in such items. Such care showed improvement in patients and people started getting better. They felt alive again and promising improvement in their treatments was seen.
World health organizations- in it, then it must be clear that they are the ones who keep a check and balance on what is happening in the world of medicine and how an illness is affecting the human race. Chronic illnesses like Aids/ HIV, cancer, etc., are not under control as they don’t have specific medicine for them, though certain cancer types can be treated with certain medications and therapies. But on a whole, these illnesses are considered chronic due to their fatality rate all over the world. There are methods and precautionary tips that must be put forward so these illnesses can be treated (Sepúlveda, Marlin, Yoshida and Ullrich, 2002).
The palliative care programs are not like the usual programs. They need more focus and determination as it involves the patient who is fighting the deadly illness and his or her family who are on the verge of losing their loved one. The palliative program ensures that the nurses who commit to this responsibility are ready, mentally and physically; to withstand any length of time period; to provide mental satisfaction and peace to the patient and the family, respect the person and proved as much care as possible (PALLIATIVE, M., & COMMITTEE, O. H. C., 2013).
The world health organizations have declared it like an emergency that such care programs must be launched worldwide to ensure the healthy progress of such patients and for this purpose, they are willing to go to any length. This matter is now not limited to just papers but this taken a form quite a revolution in the medical world. The demand for palliative care is being demanded more than ever in Saudi Arabia. Despite it being relatively new, but its been almost two decades that work on this notion has been going on (Alshammary, Abdullah, Duraisamy & Anbar, 2014).
Now, the stress is upon the installation of such theories and plans of palliative care where the scientific nature of treatment is never compromised. The need of the time is to established such care training programs for nurses who can offer excellent care facility to terminal illness ridden patients with care because nurses are actually the multi-professional people. They can be male or female, they can be of any age or their degree can vary but they all stand on one ground and that is of care and professionalism. (Sanches, Rabin & Teixeira, 2018).
Through research, it has been proved that when palliative care was introduced in some hospitals, the results were surprisingly positive and appreciated. This gave this notion a promotion that palliative illness should be introduced all over the world. The need to launch such a framework is so high that emergency work needs to be done. The illness is increasing at a high rate and people, regardless of age are getting affected by it. The Saudi Arabian nation is not different than other nations in this regard. Due to any reason, the terminal illness of cancer is prevailing in the people and it is increasing at a dangerous rate.
Saudi Arabia is one such country where such chronic illnesses like cancer and heart attacks, are taking their toll on the people. According to the survey taken by the Saudi Cancer Registry, about 12000 cases were registered alone in the year 2008. (Alshammary et al., 2014). This shows how much need to have the hospitals and their staff ready with proper preparation to deal with such cases.
Similarly, while keeping the current notion of palliative care under consideration, Saudi Arabia is in dire need to pace up the preparations of its nurses in this regard. Since Saudi Arabia is one of the largest Muslim countries in the world, the number of people residing here is definitely high as well. this also raises a lot of different elements in the treatment of such illness which hare termed terminal like cancer etc. proper palliative care units are not in progression as such but the demand is increasing day by day, therefore, government is taking notice of such issues and ordering the hospitals to speed up their work on the palliative care problems. (Alsirafy, Hassan, Alshahri, 2008).
Palliative care in Saudi Arabia has grown significantly in the recent past (Alshammary, Anbar, Duraisamy, & Abdullah, 2014). However, its growth has been characterized by several challenges. Alshammary, Anbar, Duraisamy, and Abdullah (2014) reviewed these challenges and determined ways of addressing them. One of the ways of solving this problem is through education. Nurses, physicians, and other health professionals should be educated to equip them with knowledge of basic palliative care (p. 60). They should also be educated on opioid use. The researchers noted that there is a need for implementation of education and policy amendments to ensure that there intensive training of physicians regarding opioid use and palliative care (p. 60). Anstey, Powell, Coles, Hale, and Gould (2016) reported that the challenges that lead to the need for educating nurses are poor communication between medical staff and nursing home, inadequate clinical leadership, and limited access to medical care. In their study, Anstey, Powell, Coles, Hale, and Gould (2016), they aimed to identify education interventions that would be of help in enhancing end-of-life care. It was found that education can significantly improve end-of-life-care in nursing homes. The education interventions that are most effective are scenario-based learning, workshops, and didactic sessions. The content of these interventions should be designed to improve palliative care, increase the confidence of healthcare professionals, and develop positive attitudes towards end-of-life care. According to Spilsbury, Hanratty, and McCaughan (2015), as cited by Anstey, Powell, Coles, Hale, and Gould (2016), nursing home staff receive poor education. However, they have the potential to improve health service and promote better outcomes.
Ayed, Sayej, Harazneh, Fashafsheh, and Eqtait (2015) assessed the attitude and knowledge of nurses towards palliative care. They argued that nurses are the first contacts of patients. Their baseline knowledge and belief should be established to facilitate the initiation of relevant educational programs. Fabrigar, Petty, Smith, and Crites (2006), as cited by Ayed, Sayej, Harazneh, Fashafsheh, and (Eqtait, 2015) noted that assessment of the knowledge of nurses is essential because it determines their attitude and behavioral consistency. In their study (Ayed, Sayej, Harazneh, Fashafsheh, and Eqtait (2015) found that 20.8% of nurses have good knowledge of palliative care. Physicians were found to be more knowledgeable than other health care providers (p. 98). In terms of attitudes, the study found that 56.2% of nurses have a moderate attitude of palliative care. In a different study, it was found that medical and surgical nurses had a significant difference in their attitude towards palliative care (Abu-SaadHuijer, Dimassi, and Abboud, 2007 as cited by Ayed, Sayej, Harazneh, Fashafsheh, &Eqtait (2015). The researchers concluded that nurses lack knowledge of palliative care, thus the need for the development of palliative care education services.
Balicas (2018) conducted a study to determine the effect of palliative care nursing education on the knowledge of nurses regarding palliative care. The study revealed that a brief education on palliative nursing hand significant effects on the improvement of nurses’ knowledge. A similar study revealed that education also has a significant effect on the confidence of nurses. The skills of nurses also improve when and education intervention is implemented.
According to Bodine (2016), staff in the emergency department for palliative care lack knowledge on how to handle terminally ill patients who make frequent visits to this department. With the aim of finding a solution to this problem, Bodine (2016) compared two education interventions to determine their impact on nurses. The study found that nurses who are equipped with end-of-life knowledge are efficient in handling terminally ill patients.
According to Kawaguchi, Mirza, Nissim, and Ridley (2016), palliative care is provided by internal medicine residents to hospitalized patients. However, the competencies and skills of the residents regarding palliative care are not sufficient to enable them to offer services effectively. The researchers argued that the learning priorities, attitudes, and beliefs of the staff should be understood to determine their experience with palliative care.
The researchers found that internal medicine residents have a clear understanding of palliative care. However, they face several challenges that call for the need for further learning. They should be educated on when and how palliative care should be initiated, the importance of palliative care, and how to improve their communication skills. The study also revealed that the efficiency of the staff could be improved by putting more emphasis on case-based teaching.
According to Khader, Jarrah, and Alasad (2010), the previous educational background, experiential characteristics, and background of nurses play a significant role in their attitudes towards the provision of care for the dying patients. It is essential for nurses to be knowledgeable because they spend most of their time taking care of dying patients and their families. Provision of end of life care evokes undesirable attitudes and emotions for caregivers and nurses, including fear, sadness, stress, and anxiety. Nurses can have either a positive or negative reflection of these feelings towards death and die, which can have significant effects on the quality of care. With an increase in cancer patients, nurses will have high exposure to death and dying, given that cancer is a chronic disease that is considered as a leading cause of death. It is surprising to find that nurses lack skills and knowledge on how to be effective in the provision of care during the end stages of life (Khader, Jarrah&Alasad 2010). The reason why nurses are inefficient is that they have to struggle with anxiety and personal negative thoughts regarding death and to die. Their professional experience with death and dying also affects the quality of care. In their study, Khader, Jarrah, and Alasad (2010) found that nurses have negative attitudes towards the provision of care to dying patients. In this regard, they need to be adequately prepared to deal with issues affecting them in the workplace, which can only be achieved through the implementation of educational intervention programs.
Several factors affect the quality of preparedness to practice palliative care among nurses. Lack of sufficient knowledge is one of these factors. According to Khraisat, Hamdan, &Ghazzaw (2017), a nursing student in Saudi Arabia lack knowledge of the principles and philosophy of palliative care. Besides this, they have several misconceptions regarding palliative care. Some of the nurses believe that efficiency in palliative care can be achieved through emotional detachment. It is from this perspective that the need for trained and knowledgeable nurses becomes inevitable.
Malone, Anderson, and Croxon (2016) conducted a study to explore how new graduate nurses and students are ready to deal with death and dying. Their study revealed that education strategies are essential in the improvement of the skills of nurses in the provision of end of life care. Graduate nurses were found to have anxiety on death, which affected their care for dying patients. University education fails to prepare nurses effectively on palliative care (Malone, Anderson, &Croxon, 2016). As a result, graduate nurses lack knowledge on how to communicate effectively with patients and their families when experiencing the end of life issues. The best intervention that can aid in equipping nurses with these skills is the simulation.
According to Mani (2016), explored the experiences of ICU nurses on end of life care. There are several obstacles that hinder ICU nurses from being effective in the provision of care. There are no guidelines that focus on how critical care should be provided. The rationale behind this is that critical care policy does not explicitly support palliative care or non-technical care. Mani (2016) found that there is a need to develop a protocol, standardized procedures, and education for end of life care. Lack of standardized procedures makes nurses use their experiences when providing care, which has an adverse effect on the quality of care. When palliative care education is provided, nurses’ confidence can increase, which can enhance the provision of support to dying patients. Mani (2016) also reported that lack of experience and knowledge hinders efficiency in the provision of end of life care. The problem is common among nurses who spend most of their time with dying patients. In this regard, the researcher argues that effective training, preparedness, and education should be provided to nurses. Nurses tend to be frustrated by poor prognosis and aggressive medical management that is of no benefit. They may also face emotional distress, which can affect their ability to provide optimum care. The other problem faces by nurses is the failure to be involved in the decision-making process besides the fact that they are the ones who are mostly in contact with dying patients. They are also responsible for handling the patients of dying persons. It is from this perspective that Mani (2016) suggested that both nurses and physicians should be involved in making decisions.
The relationship between nurses and patients is adversely affected by miscommunication between medical staff and nurses. The problem can be solved by developing effective teamwork. Through teamwork, the satisfaction of nurses can be improved. Their ability to cope with emotional distress can be improved. The rationale behind this is that teamwork creates a feeling of safety and security.
According to Wu Chen (2010), as cited by Mani (2016), the ICU environment can adversely affect patients’ satisfaction and quality of life. The reason behind this is that nurses are required to carry out many tasks in crowded situations.
In their study, Martin and Barkley (2016) emphasized the important role played by nurses in relieving pain and suffering in the dying process. However, they are faced with several challenges, including cultural diversity, competence, and values. The factors that affect end-of-life pain include; faith, religion, spirituality, misconceptions about hospice care, negative attitudes, distrust, racial discrimination, lack of aggressive, disease-oriented treatment, and others. As noted by Martin and Barkley (2016), cultural groups can feel that end-of-life care is against some cultural values, which can affect the quality of care. Nurses and other healthcare providers should, therefore, be educated on how to encourage patients and their families to accept the end of life care.
Issues such as cultural beliefs affect the self-report of pain. For instance, Martin and Barkley (2016), reported that Asian Americans are less likely to report pain as compared to other cultures in the United States. The belief of Asian Americans is that they should always be brave regardless of the severity of pain. Being brave helps them to be role models and to improve their faith in life after death. In this regard, people from this culture rarely express pain, which can lead to healthcare providers assuming that they are not in pain. As a result, nurses should be educated on how to deal with people from various cultures by understanding their beliefs as well as their way of life. They should also be informed about how culture affects decision making among patients and their families. The rationale behind this is that there are some families that view autonomy as being a burden, such as Black Americans and Mexican Americans, and their views deserve respect.
Due to these cases, ruling medical party in Saudi Arabia has encouraged its medical authorities to launch such programs where chronic illness related nurses must be trained according to the requirement of the treatment programs because even when medicines are being provided, even when treatments are happening, nothing can match the treatment that one gets from the words and care of another person.
That is why the stress is upon the launch of such care programs and training of nurses is considered a must since they are always available in the hospital. They are more close to patients than doctors and they are able to treat patients with more care and affection than doctors. Therefore, nurses are expected to get accomplished with such compassion that this training would be easy for them and they can actually put them heart in it. So they can play a vital role in the development of such a technique that provides the healthiest attributes to the sick person. (Murray, Kendall, Boyd, sheikh, 2005).
Providing a healthy environment whether at home or hospital is considered very essential. And it is always expected that nurses will play heir essential role. It must be mention here that nurses are always ready to provide all kinds of affirmative response when they are busy in treating a patient.
Materials and Methods
The study design is descriptive cross-sectional design that is used to answer the research questions.
The study was conducted in King Abdullah specialize children hospital (KASCH) in National Guard Health Affairs (NGHA) in Riyadh. KASCH is well recognized as a distinguished healthcare provider. It has six directorates of nursing services including outpatient, pediatric, oncology, transplant, surgical, pediatric emergency, pediatric ICU. Oncology covered by one directory.
Sample Size and Technique
The total nurses’ population in KASCH is 1334 nurses. The study will be conducted on adult oncology, which includes 166 nurses distributed on five units. All nurses who meet inclusion criteria will be invited to participate in the study.
· All inpatients staff nurses, nurse coordinators, nurse managers and clinical resource nurses who are working in adult oncology in KASCH in Riyadh.
· Saudi and non-Saudi nurses with graduate, post graduate or diploma degree.
· Having experience of less than a year and up to more than ten years.
· Nurse residents, interns, outpatient nurses are excluded from the study.
Data Collection Tools
Data collection was conducted using online self-administered structured questionnaire which developed by the researcher; the tool of data collection was consists of two parts:
· The first part concerned with socio-demographic data for nurses such as age, gender, qualification, and years of experience…. etc.
· The second part concerned with knowledge of nurses regarding using Palliative Care Quiz for Nurses (PCQN) which created by Ross et al. (1996), at the University of Ottawa, Canada (Ref 1)
· The third part concerned with attitude of nurses regarding using Palliative
The pilot study was carried out to evaluate the validity and reliability of the questionnaire in order to detect any ambiguity in the tool, clarity of the items, as well as to determine the time consumed for data collection. Necessary modifications were carried out and develop the final form of the tool. Cronbach’s alpha coefficient was used to measure the reliability of the items.
Validity and Reliability
· Informed consents was obtained from all participants for agreement about participation.
· Participants privacy and confidentiality will be assured, no identifiers will be collected and all data will be kept in a secure place within NGHA premises both hard and soft copies
· The participants had the data collection tool that contained an explanation of the study, its purpose, and the required instructions was given to participants.
· Participation was voluntary and participants have the right to refuse participating in the study.
· All answers will be maintained confidential and for the purpose of the current study only
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