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Nurses' Knowledge About Palliative Care A Cross-Sectional Survey
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Nurses’ Knowledge About Palliative Care A Cross-Sectional Survey
Mohammad Al Qadire, RN, MSN, PhD
Insufficient knowledge of palliative care among nurses is well documented and is considered one of the main obstacles to providing high-quality palliative care services. Thus, this study aims to evaluate Jordanian registered nurses’ knowledge about palliative care. A quantitative research method and a descriptive cross-sectional survey design were used. The sample consisted of 190 registered nurses working in 5 Jordanian government hospitals. Most participants were male (54%) and younger than 30 years (59%). They were working in surgical (32%), medical (28%), and critical care (22%) units. The total mean score of palliative knowledge was low at 8.3 (SD, 2.8), ranging from 0 to 15. The findings of the study demonstrate that nurses have insufficient knowledge about the essence, philosophy, and principles of palliative care. This study shows that nurses have insufficient knowledge and misconceptions about palliative care. Hence, basic education is needed for all nurses working in government hospitals. This education needs to be comprehensive to cover the basic principles of palliative care and symptom management. In addition, it should address the misconceptions identified in this study.
KEY WORDS chronic disease, end of life, Jordan, knowledge, nursing, palliative care
P alliative care services have been introduced and in- tegrated in health care systems over recent years. Pal- liative care aims to manage patients’ symptoms, reduce
their burden of pain, and improve their quality of life.1 Life- prolonging therapies have shifted once fatal diseases into chronic diseases, prolonging lives leading to specialized palliative care to becoming an important part of health care systems and teamwork.2 Nurses are a crucial component of palliative care teams.3 Overall, the need for palliative care has increased significantly.4 Although it was introduced some decades ago, in Jordan provision is still scattered and
underdeveloped.5 To set the study in context, information about Jordan, culture, and nursing profession is presented.
General Information Jordan is a small country (with an area of about 35 475 square miles) located in the center of the Middle East. It is surrounded by Syria to the north, Iraq to the east, Saudi Arabia to the southeast, and Palestine to the west. According to the Jordan National Census in 2011, Jordan’s total population is approximately 6.3 million. Jordan is di- vided into 12 cities, of which Amman is the largest, with 2 million inhabitants.6 The Jordanian population comprises 51.5% males and 94% Muslims. In addition, 6% are Chris- tians, including various denominations such as Greek Or- thodox, Roman Catholic, Greek Catholic, Armenian Orthodox, Assyrian, Maronite, and assorted Protestant churches among others.6,7 According to a US report (2006), about 33% of the Jordanian population is younger than 15 years, 62% is between 15 and 64 years, and only about 4% are older than 65 years.7 Average life expectancy for Jordanians is 78 years.8 Arabic is the official language, but English is widely understood and used in higher- education institutions, hospitals, and large companies.
Jordanian Culture ThecultureofJordanistheArabicIslamicculture,whichcom- prises people’s beliefs, rituals, and values. However, Western culture is apparent in the daily life of Jordanian people, expressed in dress, architecture, and even spoken language.7
Women usually dress modestly and even conservatively in rural areas, and revealing a women’s body is not appre- ciated. Most women wear headscarves, and some women veil their head and face. The separation between men and women is maintained everywhere in public, although there are no official regulations in this regard. The traditions, cul- ture, and Islamic beliefs govern the way people deal with each other. Men and women cannot date, socialize, or have sexual intercourse before marriage.
Women can work and earn the same amount of money for the same work as men and sometimes get extra pay- ment. Despite difficulties such as the need to obey the hus- band and to adhere to traditional mores, women practice many professions, including taxi drivers, teachers, nurses, and even ministers. Same-sex friends can hug, hold hands, and kiss each other in public; restrictions apply only to the
Mohammad Al Qadire, RN, MSN, PhD, is doctor of oncology and pal- liative care nursing, Faculty of Nursing, Al Al-Bayt University, Mafraq, Jordan.
Address correspondence to Mohammad Al Qadire, RN, MSN, PhD, Al Ghad International Collages for Health sciences Nursing Department Riyadh_Kingdom of Saudi Arabia ([email protected]).
This research was not granted any kind of financial support.
The author has no conflicts of interest to disclose.
DOI: 10.1097/NJH.0000000000000017
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interaction of men and women.9 It is normal to initiate con- versation with a woman in a work environment or chat, but any form of physical contact is prohibited. In health care settings, male nurses or doctors can take care of female pa- tients. However, some women or men prefer to be treated by a health care professional of the same gender. It is com- mon practice that a woman is chaperoned when treated by a male health care worker.
Decisions are usually negotiated within the family, mainly by the father and mother. There is an assumption that decisions should not be taken in the absence of the head of the family.10 The modern Jordanian family shares these decisions, but in some geographical areas, the older male member is dominant, and some other relatives can contribute to the decision. The family is the single unit of the Jordanian community. It has its own rules that can pe- nalize or motivate its members. For example, if a member went against the rules, this might result in that member’s social ostracism. With the advent of globalization, these tra- ditions are on the wane, but it can still be seen in rural areas.
Nursing in Jordan Professional nursing began more than 50 years ago. The nursing profession has started to gain community respect, and it is now widely known and appreciated. Jordan cur- rently supplies most of the Arab Gulf countries with a nursing workforce. According to the Jordan Nurses and Midwives Council, there are 18 874 registered nurses and midwives, 53% of whom are males.11 The Jordan Nurses and Midwives Council provides continuous education for nurses to maintain and extend their knowledge, besides skills such as acute care, cancer care, and life support courses.11 In 2003, the Jordanian Nursing Council (JNC) was established, and its members are from academic and clinical areas. The JNC aimed to enhance the efforts to sup- port nursing as a profession and to improve education and nursing research.12 The JNC set the strategic plan for the nursing profession and standardized nursing care in Jordan as far as possible.12
LITERATURE REVIEW
According to the World Health Organization public health strategy, educating and training are required for safe prac- tice and integrating palliative care into health care sys- tems.13 Unfortunately, insufficient knowledge among nurses and other health care providers is well documented and is considered one of the main obstacles to providing high-quality palliative care services.4 For instance, a study conducted in Lebanon to evaluate nurses’ knowledge, atti- tudes, and practice found that those nurses without a clin- ical background (eg, teachers, and this may be because they have long theoretical experience) have better knowl- edge of palliative care than clinical nurses.4 In addition, a
considerable number of nurses erroneously believed that the main goal of palliative care is to prolong patients’ lives and that palliative care could make patients feel hopeless and depressed.4 This study recruited a large number of nurses (956) to reply to a specially developed question- naire; however, the study instrument was not empirically tested for reliability or validity.
Another study that was conducted in India estimated the level of nurses’ knowledge about palliative care (n = 363); the nurses participating in this study worked in different hospitals.3 The results of the study indicated that nurses had poor knowledge of palliative care principles (mean to- tal score was 7.16 of 20 [SD, 2.69]), with the worst scores on psychiatric, dyspnea, and gastrointestinal problems sub- scales, respectively.3 The lack of adequate knowledge about palliative care is not limited to developing countries. A large-scale survey in the United States examined nurses’ (n = 567) knowledge and competency regarding end-of- life care.14 Most of the nurses in the study had received no formal education on end-of-life care; they also had poor knowledge of 21 of 23 items presented in the study instru- ment. This study recommended providing nurses with teaching on palliative and end-of-life care to enhance the quality of the provided care and improve nurses’ knowl- edge.14 Furthermore, studies show that nurses working in nursing homes and pediatric and critical care units also lack the knowledge required to provide palliative care ser- vices.15-17 Two of these studies15,16 used the Palliative Care Quiz for Nursing (PCQN) to evaluate knowledge, which is a validated measure of nurses’ knowledge regarding palli- ative care.18 Both studies reported that nurses had insuffi- cient knowledge regarding the principles and practice of palliative care.15,16
This review of literature documents that registered nurses have a low level of knowledge about palliative care. In Jordan, palliative care is not well integrated within the health care system5 and is based on the efforts of individ- uals rather than health care policy. As no previous study has explored this phenomenon in Jordan, this study aimed to evaluate registered nurses’ knowledge of palliative care.
METHODS
Aim This study aimed to evaluate Jordanian registered nurses’ knowledge about palliative care. A quantitative research method and a descriptive cross-sectional survey design were used.
Sample The sample consisted of 190 registered nurses (response rate was 63%) working in Jordanian government hospi- tals. The required sample size depended critically on the
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percentage of correct answers to the PCQN. For a per- centage between 40% and 80%, knowing that the number of nurses working in these hospitals is around 600, com- plete data from 175 to 229 to participants were needed to estimate nurses’ knowledge about palliative care. From http://www.raosoft.com/samplesize.html, this would allow the percentage of correct answers to be estimated with a 95%marginof error of at most T5%.However,the researcher distributed 300 questionnaires to allow for recruiting an adequate number of participants within the precalculated sample size range. As a result, a total of 190 registered nurses participated in the study, an adequate sample size.
Settings Five government hospitals were invited to participate in the study. Four are located in the northern area of the country and one in the capital city Amman. All are large city hospi- tals (tertiary care setting). Bed capacity ranged from 85 to 200. It is estimated that some 600 registered nurses are working in these hospitals.
Instruments The PCQN was used to measure participants’ knowledge of palliative care.18 It comprises 20 questions, the re- sponses being true, false, or don’t know. The PCQN’s internal consistency of 0.78 is considered high.18 Minor modifications were made to make the questionnaire un- derstandable for nurses. For example, the words ‘‘bowel regimen’’ in item 8 were explained by adding the following 2 words ‘‘laxative treatment,’’ and in item 16, the drug name ‘‘Demerol’’ was replaced by the commonly used name in Jordan ‘‘Pethidine.’’ However, these changes are expected to have no effect on the PCQN’s validity and reliability. The tool was provided for nurses in its English version since nursing is taught using the English language. In addition, information on participants’ demographics such as age, gender, education level, area of experience, years of expe- rience, and whether they have received palliative educa- tion or not in the last 5 years was collected.
Procedure The researcher obtained ethical approval of the university and settings research ethics committees. Then, 300 ques- tionnaires (190 were returned completed) were sent to the 5 government hospitals and distributed to available nurses. However, additional copies were left in the depart- ments for other nurses who are on nights or off duty. A brief introduction to the questionnaires and written information about the study background, purpose, and what is required from nurses were attached to the questionnaires. The infor- mation sheet included the researcher’s contact details to re- ceive any inquiries regarding the PCQN. All completed questionnaires were gathered in the head nurses’ offices in each department and were collected by the researcher.
Data Analysis Data were entered into the Statistical Package for the Social Sciences (version 17; SPSS Inc, Chicago, IL). Descriptive and inferential statistics were conducted.19 Descriptive sta- tistics such as percentages and frequencies were used to describe the sample characteristics and their responses on the PCQN.20 The Mann-Whitney U test was used to compare the PCQN score distribution between 2-group variables (ie, hadreceivedpalliativecareeducationornot),andtheKruskal- Wallis test was used to compare the PCQN score distribution
TABLE 1 Demographic and Professional Characteristics of Participants
Characteristics Frequency (%)
Age, y
G30 111 (59)
30-39 59 (31)
40-50 16 (8)
Q50 4 (2)
Gender
Male 103 (54)
Female 87 (46)
Education level
Diploma 37 (20)
Bachelor 139 (73)
Master 14 (7)
Clinical unit
Medical units 54 (28)
Surgical units 60 (32)
Critical care units 42 (22)
Pediatric and maternity units 19 (10)
Emergency units 15 (8)
Clinical experience, y
G5 75 (39)
5-10 70 (37)
910 45 (24)
Whether received palliative care education
Yes 49 (26)
No 141 (64)
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between variables that have more than 2 groups (ie, age, education level, year, and area of clinical experience).21
RESULTS
Sample Characteristics The sample consisted of 190 conveniently sampled regis- tered nurses working in 5 government hospitals in Jordan, and these nurses had similar characteristics to the larger Jordanian nurses’ population. Most were male (54%) and younger than 30 years (59%) (Table 1). One hundred
thirty-nine (73%) had a bachelor degree as the highest ed- ucation level, and 75 (39%) had less than 5 years’ clinical experience. The majority of participants were working in surgical (32%), medical (28%), and critical care (22%) units. Furthermore, 142 nurses (64%) reported having received no education about palliative care.
Knowledge About Palliative Care The study instrument (PCQN) has 20 items to be answered by nurses. For each completed questionnaire, the total score was calculated (sum of the number of correctly an- swered items). This score can theoretically range from
TABLE 2 Descriptive Results of Nurses Responses on the PCQN
Item
Nurses’ Answers Correct Wrong
Frequency (%)
1. Palliative care is appropriate only in situations where there is evidence of a downward trajectory or deterioration. (False [F])
73 (38) 117 (62)
2. Morphine is the standard used to compare the analgesic effect of other opioids. (True [T]) 109 (57) 81 (43)
3. The extent of the disease determines the method of pain treatment. (F) 33 (17) 157 (83)
4. Adjuvant therapies are important m managing pain. (T) 119 (63) 71 (37)
5. It is crucial for family members to remain at the bedside until death occurs. (F) 73 (38) 117 (62)
6. During the last days of life, drowsiness associated with electrolyte imbalance may decrease the need for sedation. (T)
83 (44) 107 (56)
7. Drug addiction is a major problem when morphine is used on a long-term basis for the management of pain. (F)
55 (29) 135 (71)
8. Individuals who are taking opioids should also follow a bowel regimen (laxative treatment). (T) 107 (56) 83 (44)
9. The provision of palliative care requires emotional detachment. (F) 62 (33) 128 (67)
10. During the terminal stages of an illness, drugs that can cause respiratory depression are appropriate for the treatment of severe dyspnea. (T)
84 (44) 106 (56)
11. Men generally reconcile their grief more quickly than do women. (F) 63 (33) 127 (67)
12. The philosophy of palliative care is compatible with that of aggressive treatment. (T) 63 (33) 127 (67)
13. The use of placebos is appropriate in the treatment of some types of pain. (F) 55 (29) 135 (71)
14. High-dose codeine causes more nausea and vomiting than morphine. (T) 106 (56) 84 (44)
15. Suffering and physical pain are identical. (F) 74 (39) 116 (61)
16. Demerol (Pethidine) is not an effective analgesic for the control of chronic pain. (T) 89 (47) 101 (53)
17. The accumulation of losses makes burnout inevitable for those who work in palliative care. (F) 53 (28) 137 (72)
18. Manifestations of chronic pain are different from those of acute pain. (T) 138 (73) 52 (27.4)
19. The loss of a distant relationship is easier to resolve than the loss of one that is close or intimate. (F)
54 (28) 136 (72)
20. Pain threshold is lowered by fatigue or anxiety. (T) 83 (44) 107 (56)
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0 (minimum score) to 20 (maximum score). However, the PCQN has 3 subscales (theoretical categories), and the mean score was calculated for each of these by summing the scores of each item belonging to the subscale and divid- ing this by the number of items.
The total mean score was low at 8.3 (SD, 2.8), ranging from 0 to 15. However, the mean score was not distributed normally, as kurtosis was 0.69 and skewness was j0.45,21
and the Shapiro-Wilk test was significant (W = 0.968, P G .001).
The number of correctly answered statements ranged from (17%, on statement 3) to 138 (73%, on statement 18). Table 2 details nurses’ answers on the PCQN. The statements with the most correct answers were items 18 (73%), 4 (63%), 2 (57%), and 8 and 14 (56%). All of these statements belong to the pain and symptom man- agement conceptual category. However, although nurses’ performance on these selected items was good, overall performances on the other items in this category were not good.
Theoretical subscales of the instrument include philos- ophy and principles of palliative care (items 1, 9, 12, 17), pain and symptom management (items 2-4, 6-8, 10, 13-16, 18, 20), and psychosocial and spiritual care (items 5, 11, 19). The total mean score for the pain and symptom manage- ment category (13 statements) was low at 5.6 (SD, 2.1) of a maximum score of 13. The mean scores on the other 2 conceptual categories were even lower: 0.8 (SD, 0.7) of 3 (maximum score) on psychological and spiritual care (3 statements) and 1.1 (SD, 0.8) on the philosophy and principles of palliative care (4 statements). Table 2 shows that a high percentage of nurses correctly answered state- ments 18 (73%) and 4 (63%), whereas all other 17 state-
ments were answered correctly by fewer than 57%. Eleven statements (1, 3, 5, 7, 9, 11, 12, 13, 15, 17, and 19) were answered correctly by fewer than 40%.
Nurses believed that the extent of a disease could deter- mine the method of pain management (statement 3, false) and that placebo is effective in treating pain (statement 13, false). Nurses (71%) thought that the use of morphine would result in patients’ addiction. On the spiritual level, most nurses (67%) agreed that men are able to hide their grief and emotions better than women. One hundred sev- enteen nurses were not able to differentiate between suf- fering and physical pain, and 62% of nurses did not know the basic principle of palliative care (statement 1). In Table 3, the top 7 misconceptions about palliative care among par- ticipants are presented. It is clear that nurses’ most common misconceptions are not limited to 1 aspect of palliative care but are related to the 3 conceptual categories: principle and philosophy of palliative care, pain and symptom manage- ment, and psychological and spiritual care. This indicates the rudimentary level of knowledge about palliative care among the nurses who participated in this study.
Comparisons of PCQN Scores Between Groups The distribution of PCQN scores in regard to age group, education level, years, and area of experience was tested using the Kruskal-Wallis test. Kruskal-Wallis tests show that there were no significant impacts (P 9 .05) for age group, education level, years, and area of clinical experience on thelevelof nurses’ knowledge (Table 4). The Mann-Whitney test was used to examine if there was a difference in the distribution of PCQN scores between nurses who had or had not received palliative care education. The results show no significant difference in PCQN score in regard
TABLE 3 Misconceptions About Palliative Care Statement Conceptual Category
3. The extent of the disease determines the method of pain treatment. (False [F])
Pain and symptom management
17. The accumulation of losses makes burnout inevitable for those who work in palliative care. (F)
Philosophy and principles of palliative care
19. The loss of a distant relationship is easier to resolve than the loss of one that is close or intimate. (F)
Psychological and spiritual care
13. The use of placebos is appropriate in the treatment of some types of pain. (F)
Pain and symptom management
7. Drug addiction is a major problem when morphine is used on a long-term basis for the management of pain. (F)
Pain and symptom management
9. The provision of palliative care requires emotional detachment. (F)
Philosophy and principles of palliative care
12. The philosophy of palliative care is compatible with that of aggressive treatment. (True)
Philosophy and principles of palliative care
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to previous palliative care education (U = 3402, z = j0.158, P = .875).
DISCUSSION
This is the first survey carried out in Jordan to estimate nurses’ knowledge about palliative care. The findings of the study demonstrate that nurses have insufficient knowl- edge about the essence, philosophy, and principles of palliativecare.Theirknowledgewas severelycompromised, as evidenced by the very low average PCQN score (mean, 8.3[SD,2.8]);previousstudiesreportedhighermeans.15,16,22,23
In addition, the best percentages of correct answers were low (11 items were answered correctly by G40% of nurses). The results also show that nurses participating in the study held a considerable number of misconceptions about pal- liative care. For example, they believed that the use of pla-
cebo is effective in pain management; they associated the severity and extent of disease with the selection of the pain treatment method, and they believed that emotional de- tachment is a prerequisite for the provision of palliative care services.
The results of this study were partially consistent with previous studiesinregardtolow knowledgelevel,3,4,15,16,24,25
but there are some aspects that were different, which might be associated with the status of palliative care in Jordan. In this study, nurses’ level of knowledge was lower than reported from other parts of the world.15,16,22 In addition, nurses were not familiar with the concept, and misconcep- tions related to pain management, principles, and philoso- phy of palliative care were prevalent. This can be explained by the fact that, in Jordan, structured palliative care service programs are not available. Palliative care services are lim- ited to some geographical areas in the capital city, Amman, provided by nonprofit organizations but not the government as represented by the Ministry of Health.5 Therefore, all ac- tivities related to palliative care (including education courses) and palliative care itself remain poorly organized and dependent on individual effort. Further research to examine the availability, adequacy, distribution, and need for palliative care in Jordan is strongly recommended.
Another explanation for this low level of knowledge could be the lack of education content about palliative care in nursing curricula. Previous studies have reported insufficient and inadequate education about palliative care in nursing schools.26,27 For instance, a study con- ducted in the United States found that students’ knowledge of end-of-life care tended to increase as they progressed toward the end of their study program.28 However, it was still considered to be limited and not adequate to enable them to provide high standards of care once they gradu- ated from nursing school.28 In Jordan, this assumption needs to be tested by a further study to evaluate student nurses’ knowledge and whether they receive palliative care education.
This study highlighted the fact that nurses in the selected government hospitals lacked the basic level of knowledge about palliative care. This, without doubt, would be re- flected in the care provided in general and palliative care in particular. A recent literature survey showed that better knowledge about palliative care is associated with a more positive attitude by nurses and with communication skills, empathy, and pain management.29 Most of the previous studies agree that education in palliative care is essential to improve nurses’ knowledge and practice.15,29-32
This survey targeted nurses who are working in 5 gov- ernment hospitals, the only source of treatment for most people; because all hospitals under the Ministry of Health apply similar policies and standards of care, the results of this study are alarming and point to the urgent need for a comprehensive palliative care services program. Moreover,
TABLE 4 Comparisons of PCQN Scores and Demographic Variables
Registered Nurse Variable n
Kruskal- Wallis H df P
Age, y 0.76 3 .860
G30 111
30-39 59
40-50 16
Q50 4
Education level 1.54 2 .463
Diploma 37
Bachelor 139
Master 14
Years of experience 3.31 2 .191
G5 75
5-10 70
910 45
Area of experience 0.79 4 .940
Medical units 54
Surgical units 60
Critical care units 42
Pediatric and maternity units
19
Emergency units 15
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palliative care services should be provided in all health care settings, not only within specialized centers or units.33
Thus, not only specialized nurses but also general nurses, student nurses, and other health care providers will be in contact with patients who are in need of palliative care.33 This strengthens the need for palliative care courses for nurses and other health care workers in Jordan, to improve nurses’ knowledge and therefore palliative care practice.
Finally, there was no significant difference in the mean score of PCQN in regard to previous palliative care educa- tion. This may be because of the small number of nurses who had received such education (49 of 190). This was consistent with 1 study16 but contradicts other reports.15
However, studies into the effects of education courses on palliative care for nurses and other health care providers have reported significant positive effects.15,29-32
There are a number of limitations to this study that in- clude the following. First, the sample was recruited on the basis of convenience sampling; hence, the participants who completed the survey might not entirely reflect the knowledge of those who did not. This reduces the possibil- ity of generalizing the implications of the study. Second, this study was limited to 5 hospitals located in northern cit- ies and the capital, which limits the external validity of the findings. However, government hospitals in Jordan use similar policies and standards of care; hence, findings may well be applicable to all government hospitals (the government’s health care sector is responsible for provid- ing the majority of health care services in Jordan and is available throughout the country). Finally, using the English version of the questionnaire could hinder nurses’ understanding of some items; although all words thought to be open to misinterpretation were replaced by easier and more commonly used words, an Arabic version of the questionnaire is recommended for future work in the field.
CONCLUSION
This study has shown that Jordanian nurses working in government hospitals have insufficient knowledge of pal- liative care. Basic education is needed for all nurses work- ing in government hospitals. This education needs to be comprehensive to cover the basic principles of palliative care and symptom management. In addition, it should ad- dress the misconceptions identified in this study.
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