Pediatric palliative care from nursing and PharmD perspectives

Abstract

Background:

This research aimed to survey a sample of nursing students and Doctor of Pharmacy (PharmD) students in Jordan about their knowledge of pediatric palliative care (PPC) in the context of treating terminally ill children.

Method:

A descriptive, cross-sectional, correlational design was used to fulfill the goal of this research. A convenience sample of nursing and PharmD students currently studying in Jordan University of Science and Technology in Jordan was recruited to complete a survey that contained 20 statements about issues on and around the subject of PPC.

Results:

The results showed that there was a significant difference in PPC between nurses and PharmD students. The mother’s education (t = 2.158, P = 0.032) and being a nursing or PharmD student (t = 1.969, P = 0.050) were associated with knowledge about PPC. Other listed factors such as gender, working ward, and age were not associated with knowledge of PPC.

Conclusion:

This was the first study in Jordan to survey a sample of nursing students and PharmD students in Jordan about their knowledge of PPC. The current study found that knowledge of nursing and PharmD students regarding PPC was satisfactory, depending on the scale used.

Pediatric palliative care (PPC) is defined as “a special, closely related field to adult palliative care.”¹ It aims to decrease the suffering of pediatric patients who face chronic and life-threatening illness and their families. It involves physical, psychosocial, and spiritual fields.^1–3 It requires a broad multidisciplinary approach and may include nurses, doctors, social workers, chaplains, and other therapists.^4–8

Pediatric palliative care is expanding the focus of care to include not just dying patients but also patients diagnosed with a life-limiting illness.^9–12 The congenital anomalies, injuries, and non-communicable diseases are the emerging priorities in the global child health agenda.^1,12–14 Life-threatening diseases, neonatal disorders, congenital defects, and chronic kidney disease are the major causes of child deaths in the Jordan population.⁶ According to the 2011 national life-threatening diseases register report, life-threatening diseases are the second cause of death after heart disease, with more than 41 million pediatric deaths each year, which equals 71% of global deaths.¹

The number of children who suffer from terminal diseases each year reached 21 million.⁷ These chronic diseases are causing suffering for the affected children and their families, and create a significant need for PPC services.^15–18 In Florida, Knapp et al.¹⁹ conducted a study involving 279 pediatric nurses who worked in hospital and community settings, and described the knowledge of state-employed nurses using two PPC quizzes: the knowledge about hospices quiz (KHQ), and the PPC quiz for nursing (PCQN). The results of Knapp study revealed that pediatric nurses in Florida had limited baseline knowledge of PPC. Another study in the USA evaluated the PPC knowledge of pediatric nurses. The study used both the PCQN and the knowledge of hospices questions KHQ. Nurses gave correct responses to at least half of the KHQ questions.

Regarding PCQN, at least half of the nurses responded correctly to 12 of the 20 items. Similarly, both Chen et al.²⁰ and Verri et al.²¹ examined nursing professional staff’s knowledge about palliative care that included the pediatric population. Chen et al.²⁰ explored the neonatal nurse’s beliefs and attitudes towards caring for dying neonates in Taiwan. The findings were that this service is not offered to dying neonates they and highlighted eight barriers to provide PPC such as communication deficits related to the lack of an in-service educational program, insufficient staffing, lack of policies, the lack of available counseling, personal beliefs about death, and barriers related to the understanding of the philosophy and objectives of PPC and difficulties in working with pediatric cases. The participation of future nurses and Doctors of Pharmacy (PharmDs) in PPC decision processes were recognized as keys to attaining optimal decisions.^12,13. As suggested by Veri et al.²¹ more research studies are required to understand barriers behind poor involvement of future nurses and PharmDs in PPC.

To the best of the authors’ knowledge, there are no previous studies on future nurses’ and aPharmDs’ knowlledge of PPC in Jordan. Hence, this study makes an important contribution to this area of research by highlighting the concerns that these future nurses and PharmD have about the use of PPC. This study aimed to (i) examine the knowledge of nursing and PharmD students of PPC, and (ii) determine the predictors of knowledge of PPC.

Method

Eligible respondents were recruited into the study using a cross-sectional survey. The eligibility criteria were that they should be be nursing or PharmD students studying in Jordanian universities at the time of the study. A campaign approach coupled with social media and web-based applications was executed from April 1 to June 1, 2020, to advertise and select survey respondents and gather the survey study data. The researchers employed four approaches to pick respondents that include paid Facebook advertisements, individual messages, and postings on forums focusing on nursing and PharmD students in the school site. It is worth mentioning that palliative subjects in Jordan are given as one lecture in the pediatric health course for nursing student and as a lecture for the pharmacology clinical course for fifth-year pharmacology students. This lecture is on identifying the needs of the dying patient and family, along with how to meet those needs. The lecture also discusses patients’ feelings regarding the end of life.

A research assistant provided the survey documents online. The participants were required to voluntarily sign an attached online agreement form and the survey questionnaire before finishing the survey. Students who accepted signing an informed agreement could complete an online survey questionnaire. The respondents each needed roughly 8 min to complete the survey. The research assistant used an Excel format to collect online reviews and kept them in a safely guarded computer. Students who participated were informed that their responses might contribute to boosting an understanding of the utilization of online learning methods. Respondents were assured of the protection of their identifiable health data because of the stringent procedures of privacy and confidentiality in this study.

Instruments

This instrument was used to assess the nurse’s knowledge about PPC using the palliative care nursing questionnaire (PCQN) tool, which was developed by Margret et al.¹⁵ This instrument was chosen because it was used previously on nursing students and found to be appropriate for medical specialty students, as used by Dr Khraisat.¹² The instrument contained 20 items with answer choices of “true,” “false,” and “I don’t know.” The items of this questionnaire asked about the philosophy and principles of palliative care, management of pain and other symptoms, and psychosocial aspects of care. Each correct answer was awarded 1 point, whereas each incorrect or “I don’t know” answer was awarded 0 points. The internal consistency of the 20-item quiz was 0.78, indicating high internal consistency¹⁵. Nevertheless, there are three sub-scales in PCQN: (a) philosophy and PPC principles (elements 1, 9, 12, 17); (b) pain and management of symptoms (elements 2–4, 6–8, 10, 13–16, 18, 20); and (c) psychosocial and spiritual attention (elements 5, 11, 19).

Data analysis

All data collected from the participants in the questionnaire that used google forms were entered into the Statistical Package for the Social Sciences SPSS (Chicago, Illion, USA) database after coding it. The data entered were checked for accuracy, and then statistically analyzed. The means and standard deviations were used to describe the continuous measured variables and the frequencies and percentages were used to describe the categorical factors. Cronbach’s alpha test of reliability was used to assess the internal consistency of the nurses measured knowledge indicators toward the palliative care, and the Kuder–Richardson test (KR-20) was used to assess the reliability of the dichotomized future nurse’s knowledge of PPC indicators (PCQN) questionnaire. Multivariate linear regression analysis was used as a secondary analysis to assess the significant predictors for the future nurses’ and PharmD knowledge of palliative care at baseline.

Ethical consideration

Ethical approval was obtained from the Institutional Review Board (IRB, Reference# 2020145) at the Jordan University of Science and Technology. Potential research participants were informed about the anonymous and voluntary nature of the study, confidentiality of information obtained in this study, and the risks and benefits associated with consenting to participate. As informed consent was embedded in the online survey, questions would not be viewed by potential participants unless they clicked the “I agree” button, which indicated their voluntary participation.

Results

Demographic characteristics

Total of 402 nursing and PharmD students participated in the study include 242 nurses and 160 PharmDs students. Students from both genders participated in this study: 90 males (22.4%) and 312 females (77.6%). The participants were from Jordan, Egypt, Syria, Saudi Arabia, Kuwait, and Bahrain (see Table 1).

Table 1.

Frequency distribution of socio-demographic characteristics of participants (n = 402)

Variable	Frequency (%)
Gender
Male	90 (22.4)
Female	312 (77.6)
Nationality
Jordanian	325 (80.8)
Other	77 (19.2)
Age (years)	20.3 ± 2.3
Mother’s education
Primary or secondary	125 (31.1)
Diploma	55 (13.7)
Bachelor	143 (35.6)
Graduate	79 (19.7)
Father’s education
Primary or secondary	118 (29.4)
Diploma	101 (25.1)
Bachelor	134 (33.3)
Graduate	49 (12.2)
College level
Freshmen (first year)	23 (5.7)
Sophomore (second year)	30 (7.5)
Junior (third year)	78 (19.4)
Senior (fourth year)	130 (32.3)
Senior (fifth year)	105 (26.1)
Senior (sixth year)	36 (9.0)
Income (JD = 1.5 $)
Less than 400	47 (11.7)
400–600	86 (21.4)
600–800	61 (15.2)
800–1,000	85 (21.1)
More than 1,000	123 (30.6)
Specialty area
Nursing	242 (16.4)
PharmD	160 (42.9)
Area of living
City	261 (64.9)
Village	141 (35.1)
Prior experience with PPC (family member)
No	150 (37.3)
Yes	252 (62.7)
Taken PPC specialty course
No	350 (87.1)
Yes	52 (12.9)
Reasons for preventing PPC
Religious reasons	78 (19.4)
Social reasons	78 (19.4)
Scientific	50 (12.4
Others	196 (48.8)

Knowledge of PPC among the students

Knowledge among nursing and PharmD students was good (M = 14., SD = 10.3). The knowledge section was included statment that student were required to respond to them according to the ethics there were taught in the school or their life. Many students responded to the following statement correctly “Palliative and end of life services should provide only pain and comfort measures (N = 340, 85%) and if a dying child on a morphine drip experiences hallucinations and irritability, the best management would be to change to another drug (N = 335, 83%). Many students responded correctly the following statement “Taking a photograph of a child after death is an acceptable practice despite the culture or religious background (N = 337, 84%) and PPC order is required for children admitted to hospice programs (N = 222, 55%). See Table 2.

Table 2.

Response toward PPC from PharmD and nursing students (N = 402)

Items	False	(%)	I do not Know	(%)	True	(%)
PPC requires that a patient is actively dying	26	6	60	14.9	316	79
A patient who has a PPC order should be excluded from receiving acute treatment in the form of vasopressors or mechanical ventilation	103	26	68	16.9	231	57
Even if a child is actively dying, hope should never be discarded	53	13	92	22.9	257	64
Parents or guardians should have a voice in determining the PPC options for their child	34	8	95	23.6	273	68
A hospital-wide PPC team would be acceptable to me in providing family and staff support services in the pediatric unit or the PICU.	202	50	113	28.1	87	22
An ethical dilemma that arises with acute therapeutic care is whether to treat a secondary problem such as an infection when death is imminent	139	35	106	26.4	157	39
Withholding feedings is ethically acceptable for a dying child, even if the child does not have a PPC order	167	42	112	27.9	123	31
Withdrawing support is considered the same as withholding support for a dying child.	71	18	69	17.2	262	65
It is easier to care for a dying child when parents and family are not present at the bedside.	201	50	90	22.4	111	28
A most important nursing function for the dying child is to be “present” for the family.	41	10	90	22.4	271	67
Blood product transfusions are acceptable PPC options	51	13	117	29.1	234	58
Palliative and end-of-life services should provide only pain and comfort measures	29	7	33	8.2	340	85
Children who are actively dying should not be readmitted to the hospital for respiratory or nutritional support	104	26	102	25.4	196	49
A PPC order is required for children admitted to hospice programs	112	28	68	16.9	222	55
If inadequate pain control is determined in a dying child and there are no signs of toxicity, the dose of narcotic should be increased by 50%	109	27	89	22.1	204	51
Taking a photograph of a child after death is an acceptable practice despite the culture or religious background	17	4	48	11.9	337	84
Inadequate pain control hastens death in multiple ways, including increasing physiological stress, decreasing immune competency, and increasing the risk of pneumonia and thromboembolism.	290	72	65	16.2	47	12
If a dying child on a morphine drip experiences hallucinations and irritability, the best management would be to change to another drug such as hydromorphone	28	7	39	9.7	335	83
Research has supported the fact that loss of a child results in an increase in divorce and separation of the parents	170	42	100	24.9	132	33
Obtaining training in PPC will support my ability to provide EOL care for children.	33	8	83	20.6	286	71

Differences between Nursing and PharmD students

A t-test was used to compare knowledge toward PPC between nursing and PharmD students. For nurse, the PPC knowldge score were (M = 12.3, SD = 10.71887) and for PharmD PPC knowledge score was (M = 14.6, SD = 9.21544). The results showed that there was a significant difference in palliative care knowledge between nurses and PharmD students (t = 1.969, P = 0.050).

Multiple regression analysis

A multiple regression test was used to predict knowledge about PPC among nursing and PharmD students according to their demographic variables (age, gender, education level, work experience, and job role). Table 3 summarizes the outcomes of the multiple regression tests. None of the listed factors were associated with knowledge of PPC (P value > 0.05) except mother’s education (t = 2.158, P = 0.032).

Table 3.

Predictors of knowledge of PPC among nursing and PharmD students

Model	Unstandardized coefficients		Standardized coefficients	t	P value
	B	Std. Error	Beta
(Constant)	69.365	9.234		7.512	0.000
Age	−0.191	0.346	−0.037	−0.553	0.581
Gender	2.560	1.364	0.104	1.877	0.061
Research	−2.733	1.964	−0.079	−1.391	0.165
PPC	2.032	1.241	0.096	1.638	0.102
Prevent	−0.688	0.477	−0.081	−1.443	0.150
Income	0.287	0.438	0.039	0.655	0.513
Living	0.937	1.226	0.044	0.764	0.445
Nationality	1.069	1.461	0.043	0.732	0.465
Year	−0.551	0.663	−0.061	−0.831	0.407
Father education	0.295	0.626	0.030	0.472	0.638
Mother education	1.264	0.586	0.139	2.158	0.032

Dependent variable: palliative care knowledge.

Discussion

The nursing and PharmD are the main two fundemental components in PPC group as well they play a vital role in practice and improving the PPC.¹⁶ Future nurses and PharmDs can play a major role to facilitate decisions taken by terminally ill children and families by communicating, educating, advocating, and collaborating with terminally ill children, families, and other health-care providers.¹² Thus, studies were focused on assessing nursing and other health professions knowledge in a different situation and contexts like nursing students which are considered the future health professionals.^17–21 Yet, few studies evaluated the ratings of end- of-life knowledge/beliefs among nursing student and other medical professions such as PharmD.^18,22,23 The authors in this study created a descriptive cross-sectional survey that was issued to 402 nursing and PharmD students.

Our study found that knowledge of nursing students and PharmD students regarding PPC was satisfactory according to the scale used. In contrast, Conner et al., found that students had poor knowledge about PPC concepts, death meaning, and dying care, and this required urgent education to improve their knowledge and affect their attitude. A literature review conducted by Gillan found insufficient end-of-life content in nursing books and deficient palliative care content in undergraduate nursing curricula. Furthermore, there is poor knowledge among nursing students regarding palliative principles and philosophy. These areas that required enrichment include concept that defining PPC concept and objective, essence of palliative care, and the philosophical underpinnings of palliative are not covered within the curriculum. Notably, the study also revealed poor knowledge of the psychosocial and spiritual care dimensions of palliative care.¹⁴ Studies have reported that there is insufficient information regarding nursing students in spirituality in relation to health and spiritual nursing care in palliative care that includes PPC.²⁴ Similarly, in previous studies by Karkada et al. and Yousef et al.^8,9 it was revealed that nursing students have insufficient knowledge of palliative care. Knowledge of future health providers such as nursing students in developing countries toward palliative care has been explored in a few studies, but no study has explored PharmD knowledge regarding PPC.

Our study showed that there a significant difference in knowledge of palliative care between nursing and PharmD students (t = 1.969, P = 0.050). The PharmD students had a higher knowledge score of PPC. This difference may relate to greater exposure of PharmD students to end-of-life patients or having more training during their program. There are no previous studies that compared knowledge of PPC between nursing and PharmD students. However, there are many studies that compared knowledge between nurses and physicians.

Our study found that no demographic factors were associated with knowledge of PPC (P value > 0.05) except mother education (t = 2.158, P = 0.032). In contrast, Cui et al.²⁴ found three factors affected knowledge regarding palliative care: Past education (t = 2.32, P = 0.021), past training regarding death education (t = 4.02, P < 0.001), and the size of the hospital (t = −5.49, P < 0.001). In contrast to our study, a study conducted on nursing students found that a significant relationship between the knowledge and age of the student of nursing (χ² = 18.52, P < 0.01).⁸ Other studies also found that senior nursing students had significantly higher scores compared to those of sophomore students, indicating that nursing education and experience contribute to greater generalist knowledge about palliative care.²⁴ This difference may be attributed to the integration of palliative care concepts into the course on fundamentals of nursing that is taught for sophomore students during the first years. However, The information regarding this concept was partially discussed.

Implication for practice

The results of this study support the urgent need for nursing and PharmD educators to integrate content on palliative and end-of-life care into standard nursing curricula using the PPC core course; this will have positive learning outcomes even if there is some overlap in the content. This education needs to be comprehensive, covering the basic principles of PPC and symptom management, and it should be distributed throughout the different of pediatric care courses within different contexts and specialties.

Conclusion

In summary, this was the first study in Jordan to survey a sample of nursing students and PharmD students in Jordan about their knowledge of PPC. The current study found that knowledge of nursing and PharmD students regarding PPC was satisfactory according to the scale used. The results showed that there was a significant difference in knowledge of PPC between nurses and PharmD students. Mother’s education was a predictor of knowledge toward PPC. As mother’s education increased, students exhibited more knowledge toward PPC. The results of this study provide useful explanations for the challenges of executing PPC in clinical activities while helping the ill and their relatives through death.