Nursing Staff’s Perception of Facilitators in Providing End of Life Care to Terminally Ill Pediatric Patients in South East Iran

 

Sedigheh Iranmanesh*, Marjan Banazadeh

Razi Faculty of Nursing and Midwifery, Kerman University of Medical Science, Kerman, Iran

*Corresponding Author Email: s-iranmanesh@kmu.ac.ir, banazadeh54@yahoo.com

 

ABSTRACT:

Objective: To determine pediatric nurses ‘perceptions of intensity, frequency of occurrence and magnitude score of selected facilitators of providing pediatrics EOL care.

Method: A sample of 173 nurses working in pediatric units in 2 hospitals supervised by Kerman University of Medical Sciences was surveyed. A translated modified version of the (NSCCNR-EOLC) was used to rate the facilitators’ intensity and frequency.

Results: 173 sets of questionnaires were distributed with a drop out of 22. The 3 highest PFM (Perceived facilitator magnitude) score were: 1) providing a peaceful, dignified bedside scene for family members once the Child has died (5.75). 2) Physicians agreeing about direction of child care (5.25), and 3) Nurses offer verbal and behavioral support to each other (5). The 3 lowest PFM score were: 1) Letting the religious leader take primary care of the grieving family (1.08), and 2) Having a unit schedule that allows for continuity of care for the dying child by the same nurses (1.76). 3) Having fellow nurses take care of your other child while you get away from the unit for a few moments after your child’s death (2.19).

Conclusion: The result may indicate a long distance between what nurses believe to be facilitating and what actually happens. Therefore some efficient strategies are needed to improve the current situation. The lack of education and experience as well as some cultural and professional limitations may have contributed to this distance. Creating a reflective narrative environment in which nurses can express their feelings about death, dying, and palliative care may be an effective approach. A continuing palliative care education adding to nursing curriculum can improve the EOL care quality in the context. Since  EOL care is multidimensional, it is suggested to conduct some appropriate qualitative studies to deeply understand nurses' experiences/perceptions about facilitators of providing EOL care to terminally ill pediatric patients to develop valuable instruments in order to assess most important issues around this topic.

 

KEY TERMS: Perception, facilitators, end of life care, terminally ill children

 

 


INTRODUCTION:

Every day children around the world die, no matter what the causes or circumstances; a child’s death always results in heartache, grief, and suffering for families and communities.1In 2012, 6.6 million children died before their fifth birthday. Nearly 18 000 every day. Of these, nearly three millions were newborns in their first month of life.2

 

 

Medical and technological advances have certainly reduced neonatal and pediatric mortality rates, but they have also led to a longer survival of patients with severe and potentially lethal diseases without always succeeding in curing them. This therefore increases in absolute terms the number of pediatric patients with incurable diseases who continue to suffer from life-threatening problems.3 Caring for a child at the time of death is a significant moment,4 and remains a highly relevant issue within the international critical care community, a focus that is continuously evolving in response to health policy and concerns to improve standards of practice.5The Oncology Nursing Society (ONS)6 and the


Association of Oncology Social Work defined end of life (EOL) care as reduction of physical suffering of terminally ill patients through excellent assessment, reassessment, and management of physical symptoms and that psychosocial and spiritual care should be incorporated to support coping. According to Benini et al,3 children make very special patients, this is already true when it comes to deciding a course of treatment, but even more so when we move into the PC (Palliative Care) setting. PPC (Pediatric Palliative Care) is a relatively new and developing specialty, 7and has become a topic of increasing study and discussion in the health care arena.8 EAPC (European Association of Palliative Care),9 stated that it is important to draw a distinction between PC and terminal care: the latter refers to looking after children and their parents during a time closely related to their death (within weeks, days or hours). Terminal care is not PC, but PC includes terminal care. It has been estimated that 13.9% of all children are living with a chronic health condition10 and each year nearly 7 million children around the world could benefit from PPCworldwide.11While statistics of those who do receive care around the world are not readily available, it is widely understood that access to PPC is limited. Yet, provision of PPC around the world is scant; many countries have found ways to provide this care and those countries are both resource-rich and resource poor.1A number of specific interventions, programs and resources have been suggested to improve care for dying children. 12 Thus, it seems that identifying barriers and seeking valuable facilitators are the first steps in determining the direction to improve pediatric EOL care.

 

Reviewing literature indicates a few studies, 6, 14, 15 that examined the views of pediatric nurses on providing EOL care for dying children. In USA, Beckstrand et al 14 conducted a study among 474 PICU (Pediatrics Intensive Care Unit) nurses to rate size and frequency of listed obstacles and supportive behaviors in caring for children at the EOL. They found that the highest perceived supportive behavior with both the largest mean intensity and the highest mean frequency was “allowing family members adequate time alone with the child after the child has died”. The 2 next high perceived supportive behaviors were “allowing parents to hold the child while life support is discontinued” and “providing a peaceful, dignified bedside scene for family members once the child has died”. In Egypt Moawad15 assessed 94 pediatric critical care nurses’ perceptions of obstacles and supportive behaviors to provide EOL care. He revealed that the most supportive behaviors that perceived by nurses were: “staff compiles all paper work to be signed by the family before they leave the unit”, “nurses scheduled so that child receives continuity of care”, and “physicians agreeing about direction of child care”. Iglesias et al, 16 determined the relative importance of helpful behaviors and obstacles that affect caring for dying patients and families in both adult and pediatric ICUs (Intensive Care Unit) as perceived by 246 critical care nurses in Spain. He revealed that the adult ICU nurses perceived “a peaceful and dignified bedside scene when the patient has die” as the most strongly helpful behavior. Nurses from pediatric ICUs scored highest that “the family have enough time to be alone with the patient after death”. Using the Survey of Oncology Nurses’ Perceptions of EOL Care, which was adapted from two previous surveys with critical care nurses 17 and emergency nurses,18 Beckstrand et al,19 identified oncology nurses’ views of barriers and assisting behaviors at EOL care. The two highest ranked assistive behaviors were the following: “allowing family members adequate time to be alone with patients after death”, “and having social work or PC staff as part of the patient care team”. The two lowest ranked assistive behaviors were the following: “having fellow nurses care for other patients while you get away from unit for few moments after a patient’s death” and “having families physically care for dying patients”.

 

Although many barriers and facilitators of providing EOL care have been identified in various studies, the majority of investigations have been conducted in Western countries. Iran, which is also called Persia, is officially known as the Islamic Republic of Iran (IRI) and is located in western Asia. Kerman also is located in Southeast of Iran with a population about 577,514 and 12th population rank in the country. The majority of population in Iran are Muslim.20Islam teaches that people have free will but that when they die, their earthly deeds will be accountable before Allah on the Day of Judgment.4In the Iranian context, death is culturally well reflected in literature potentially with Islamic and mystical spiritual beliefs including poems and stories. In Rumi’s notion21 (Jalaluddin Rumi: 1207-1273, Iranian Sufi, mystic, poet), death is in reality spiritual birth, the release of the spirit from the prison of the senses into the freedom of God, just as physical birth is the release of the baby from the prison of the womb into the freedom of the world. While childbirth causes pain and suffering to the mother, for the baby it brings liberation. According to Abedi,22 the view of death within the Iranian culture as tragic, grim and fearful, potentially imminent and a sign of ominous fate in case of young individuals. She goes on that providing care for a terminally ill patient is a family oriented service in Iran with a cultural belief that dying among loved ones and at a familiar surrounding is everybody’s desire.

 

Children EOL care is one of the issues in modern medicine for which a distinct status has not been defined in Iran yet and nurses are hoped to be the forerunners of this modern science in Iran.23In the context of Iran no study was found to assess barriers and facilitators of providing EOL care for pediatrics. This study thus conducted to explore nurses’ perceptions of intensity, frequency, and magnitude of selected facilitators to providing pediatric EOL care in pediatric units in Kerman hospitals.


 

METHOD:

Design:

This is a cross-sectional, descriptive study that examined pediatric nurses’ perceptions of the intensity and the frequency of selected facilitators’ occurrence in caring for dying children. Approval of the study was received by Kerman University of Medical Sciences.

 

 

Table 1- Iran’s indicators

World population rank 20                             17th

World area rank                                           18th

Population77,352,373

Religious

89% shia Muslim

10% Suni Muslim

1% Christian, Zoroastrian, Bahai and Jewish

Child mortality rate 40

1–59 months                                             5.2 /1000 live births

Male                                                          52.6%

Female                                                       47.7%

Rural area                                                   60%

Urban communities                                    40%

 

Cause of death in children under 5 2

Congenital and chromosomal                     23.4

Un-intentional accidents                             20.5

Respiratory diseases                                    9.8

Infection and parasitic diseases                   8

Cardiovascular diseases                               5.6

Under 15 cancer rate 41                                1500-2000 annually

 

 

There was also an approval from the heads of two hospitals (Shahid Bahonar and Afzalipour) supervised by Kerman University of Medical Sciences, prior to the collection of data.

 

Sample:

The sample consists of convenient staff nurses working in pediatric units including: pediatric general units, pediatric oncology units, pediatric intensive care units, and pediatric emergency unit in 2 hospitals supervised by Kerman University of Medical Sciences. All nurses working in the aforementioned units were surveyed. Staff nurses who were considered eligible for the study had experienced at least 6 months working in these units and provided care for dying children. They were willing to participate in the study.

 

Instrument

To determine pediatric nurses ‘perceptions of intensity, frequency of occurrence and magnitude score of selected facilitators in providing EOL to children a translated modified version of the National Survey of critical Care Nurses’  Regarding  End-of-Life  Care (NSCCNR-EOLC) was used. This questionnaire was developed, pretested, and administered in 1998 24 and revised in 2005 so the final version of questionnaire consists of 56 items including: 29 obstacle items, 24 supportive behaviors and 3 open ended questions.17 Separate responses are required for intensity and frequency. Facilitators’ intensity and frequency are rated on 6-point Likert-type scale. For this study the six intensity and frequency alternatives in the original article were grouped together in a single category, and six levels were reduced to 4 levels respectively including: 0=not a facilitator, 1=little facilitator, 2= moderate facilitator, 3=large facilitator and 0=never happens, 1=rarely happens, 2=sometimes happens, 3=always happens. The items are ranked from highest to lowest based on their mean scores to determine which items are perceived to be the most intense supportive behaviors and which items are perceived to occur most often. To determine which facilitator items were perceived as the most intense and the most frequently occurring, the mean intensity score (MIS) of each item was multiplied by the item’s mean frequency score (MFS) to achieve an overall perceived facilitators magnitude (PFM) score. The possible perceived magnitude score for each item ranged from 0 to 25 and for the following study 0 to 9. For the current study, barriers items and  3open ended questions were omitted and just supportive behaviors items which were defined as the facilitators were applied. Based on nurses' comments, 2 items including: 1) nurses offer words of support to each other and, 2) nurses offer supportive physical touch to each other, were merged together. They suggested that based on Islamic rules, male nurses are not allowed to use supportive physical touch for their female colleagues. These two deleted items were replaced by one item as “offering verbal and behavioral support by nurses to each other”. The validity of scale was assessed through a content validity. Ten faculty members at the Nursing and Midwifery School reviewed the content of the scales from cultural and religious perspectives. According to their suggestion, in the context talking about death with children is not accepted culturally and religiously, so the item “talking with the child about his/her feelings and thoughts about dying” was replaced by the item “talking with the parents about his/her feelings and thoughts about dying”. Therefore the total facilitators’ items were 24 items. These experts were also asked to independently rate each item in terms of its relevance, clarity, and simplicity on a 4-point scale. For translation of the questionnaire from English into Farsi, the standard forward–backward procedure was applied. Translation of the items was performed by two professional translators (S.I. and M.A.F.) who are nurse educators. Afterward they were back translated into English and after a careful cultural adaptation, the final versions were provided. The Translated questionnaire went through pilot testing. Suggestions by nurses (N=20) were combined into the final questionnaire versions.

 

Reliability and content validity for (NSCCNR-EOLC) has been checked in previous research.17 The authors found an acceptable validity and reliability for the instrument. In Iran, no study was found that assessed the reliability and validity of this scale; therefore, the validity and reliability of scale was rechecked. According to their comments, to reassess the reliability of translated scale, an α coefficient of internal consistency (n=20) was computed. The α coefficient for the scale was 0.91. Therefore, the translated scale presented acceptable reliability. The questionnaire obtained an acceptable validity (CVI =0.92) for barriers section and for facilitators section (CVI =0.89). 

Data Collection and Analysis:

Accompanied by a letter including some information about the aim of the study, the questionnaires were handed out by the second author to all the convenient staff nurses including registered nurses (RNs) and auxiliary nurses (ANs) working in the mentioned pediatric units during the two months (November/December 2013). Iranians RNs must complete a 4-year bachelor’s degree at a university and then pass a national licensing examination and ANs complete a 3-year vocational training program, which does not require a high school diploma.25 Some oral information about the study was also given by the second author. Participation in the study was voluntary and anonymous. 173sets of questionnaires were distributed with a drop out of 22. Finally 151 nurses (response rate 87.2%) were included in the study. Data from the questionnaires were analyzed using Statistical Package for Social Scientists (SPSS). Descriptive statistics were computed for the study Variables.

 

RESULTS:

Participants:

The sample consisted of 151participants. A descriptive analysis of background information (Table 2) revealed that the participants’ age ranged from 20–65 years with mean age of 32.7 years (SD = 6.12). They were mainly female (98.7%) and married (80.1). Most of the participants had a Bachelor of Science in nursing degree (82.1) and stated that they receive no education about EOL care (77.5%). Approximately half of participants (54.3) were working in non ICUs including; pediatric general units, pediatric oncology units, pediatric emergency unit. Rest of them (45.7) was working in PICU. The participants reported that they had experience in nursing for a range of 0.5 to 31 years, with a mean of 8.7 years (SD = 6.63). All the participants experienced caring for dying children. More than half of them (62.9) cared for less than 10 dying children during their professional career. The age of less than half of the dying pediatric (42.4) ranged between 2- 5 years. Reported Weekly employment hours ranged from less than 30 hours to more than 40 hours. 46% of the participants worked more than 40 hours weekly. 25.8% of participants experienced caring for a dying family member. The mean years of participants’ experiences of caring for a dying member of family were 0.9. All respondents were Muslim and Shia. The majority of participants (97.4%) stated that they always experienced the existence of God in their daily living. Most of them (72.2%) claimed that they performed Religious activities daily. (Table2)

 

Descriptive Findings:

Mean scores were computed for the intensity (MIS) and frequency (MFS) for each item individually. Items were ranked according to their mean scores to determine which ones were perceived as the most intense facilitator as well as the most frequent facilitator. As in previous uses of the original instrument, to determine which facilitator items were perceived as both the most intense and the most frequently occurring, the MIS of each item was multiplied by it MFS to achieve an overall perceived magnitude score for each facilitator item (perceived facilitator magnitude, PFM). These perceived magnitude scores were ranked from highest to lowest score. Emphasis was given to the overall magnitude scores to answer the research questions (Table 3).

 

Table 2- Participants’ Background

Variable

n

 %

Age (years)

20–30

61

40.4

31–40

79

52.3

41-50

9

6

51-60

2

1.3

Gender

Male

2

98.7

Female

149

1.3

Marriage status

Married

121

80.1

Single

29

19.2

others (divorced, widow)

1

0.7

Education

Auxiliary nursing

20

13.2

Bachelor of Science  

124

82.1

Master of Science and higher 

7

4.6

Ward

PICU

69

45.7

Pediatric oncology

43

28.5

Pediatric general

28

18.5

Pediatric emergency

11

7.3

Years of nursing experience

0.5-10

111

73.5

11–20

28

18.5

21–30

11

7.3

31-40

1

0.7

Work hours per week

<30hours per week   

20

13.2

30-40hours per week       

61

40.4

>40 hours per week      

70

46.4

Dying children care experience

Yes

151

100

No

0

0

Number of dying children cared for

< 10   

95

62.9

10-30

31

20.5

> 30   

25

19.6

Dying children age range cared for

First year     

22

14.6

2-5 years old   

64

64.2

6-12 years old     

20

13.2

13-18years old 

30

20.5

All the ages  

14

9.3

Family and closed friends’ death experience

Yes

54

35.8

No

97

64.2

Dying family member care experience

Yes

 39

25.8

No

112

74.2

Experience duration of caring for a dying family member (year)

1–5

33

21.9

6–10

1

1.51

10-15

5

2.39

EOL care educational program

Yes

34

22.5

No

117

77.5

Religious

Shia

151

100

Intrinsic religiosity

Always

147

97.4

Sometimes

4

2.6

Never

0

0

Extrinsic religiosity

Daily

109

72.2

A few times per week

22

14.6

A few times per month

15

9.9

A few times per year

5

3.3

Never

0

0

 

 


Table3 - Facilitators of providing EOL Care in pediatric units: Frequency, intensity and PFM (Perceived Facilitator Magnitude) score.

Ranked by PFM score.

PFM

intensity

frequency

Facilitators

Rank

SD

Mean

Rank

SD

Mean

 

5.75

1

0.68

2.39

1

0.79

2.23

1: Providing a peaceful, dignified bedside scene for family members once the child has died.

5.25

2

0.83

2.26

2

0.80

2.17

2: Physicians agreeing about direction of child care

5

3

0.79

2.25

3

0.80

2.11

3: Nurses offer verbal and behavioral support to each other.

4.84

5

1.82

2.13

5

0.89

2.01

4: Nurse drawing on previous experience with the critical illness or death of a family member.

4.62

4

0.81

2.15

6

0.89

1.99

5: Teaching families how to act around the  dying child such as saying to them, ‘She can still hear it is okay to talk to her’’.

4.50

8

0.86

2.05

4

0.88

2.03

6: After the child’s death, having support staff compile all of the necessary paperwork for you which must be signed by the family before they leave the unit.

4.10

7

0.85

2.07

8

0.89

1.86

7: Talking with the child’s parents about their feelings and thoughts about dying.

4.03

14

0.96

1.98

9

0.95

1.82

8: Having unlicensed personnel available to help care for dying child.

3.88

15

0.93

1.98

11

0.99

1.70

9: Family members accept that child is dying

3.79

6

0.88

2.07

7

0.88

1.98

10: Family members having adequate time to be alone with the child after his/ her death.

3.77

10

0.84

2.05

10

0.90

1.72

11: Nurse having enough time to prepare the family for child’s death.

3.72

11

0.91

2.03

12

0.94

1.67

12: Family members show gratitude to nurse for care provided to child who has died.

3.59

9

0.85

2.05

13

0.93

1.65

13: Having 1 family member be the designated contact person for all other family members regarding child information.

3.29

17

0.97

1.93

17

1.07

1.45

14: Having the physician meet in person with the family after the child’s death to offer support and validate that all possible care was done.

3.16

23

0.94

1.75

15

0.89

1.56

15: Physicians who put hope in real tangible terms by saying to the family that, for example,  only 1 of 100 children in this child’s condition will completely recover

3.13

22

0.95

1.78

14

0.82

1.58

16: Allowing family unlimited access to the dying child even if it conflicts with nursing care at times.

3.08

16

0.92

1.98

16

1.06

1.46

17: Having an ethics committee member routinely attended unit rounds so they are involved from the beginning should an ethical situation arise later.

3.00

20

0.87

1.87

18

0.91

1.43

18: Family physically helping to care for the dying child.

2.71

19

1.06

1.88

19

1.11

1.23

19: Having a support person outside the work setting who will listen to you after the death of your child.

2.63

13

0.9

2.0

20

1.05

1.21

20: Letting the social worker take primary care of the family.

2.31

24

1.08

1.70

21

1.10

1.07

21: Unit designed so family has a place to grieve in private.

2.19

21

1.22

1.86

22

1.08

1.05

22: Having fellow nurses take care of your other child (children) while you get away from the unit for a few moments after the death of your child.

1.76

12

0.95

2.01

23

0.72

0.86

23: Having a unit schedule that allows continuity of care for the dying child by the same nurses.

1.08

18

1.22

1.92

24

0.79

0.61

24: Letting the religious leader take primary care of the grieving family.

 

 


The most frequent occurring facilitators:

The item’s mean frequency score (MFS) on a scale of 0 (never happens) to 3 (always happens) ranged from 0.61 to 2.23. The 3 items perceived as the most intense facilitators to providing EOL care were: 1)providing a peaceful, dignified bedside scene for family members once the child has died (2.23), 2)physicians agreeing about direction of child care (2.17), and3) nurses offer verbal and behavioral support to each other(2.11).

 

The most intense facilitators:

The items’ mean intensity score (MIS) on a scale of 0 (not a facilitator) to 3 (a large facilitator), ranged from 1.08 to 2.39. The 3 items perceived as the most intense facilitators to providing EOL care were: 1)providing a peaceful, dignified bedside scene for family members once the Child has died (2.39),2) physicians agreeing about direction of child care (2.26), and3)nurses offer verbal and behavioral support to each other (2.25).

The least frequent occurring facilitators:

The 3 items perceived as the least frequent occurring facilitators to providing EOL care including: 1) letting the religious leader take primary care of the grieving family (0.61), 2) having a unit schedule that allows for continuity of care for the dying child by the same nurses (0.86), and 3) having fellow nurses take care of your other child (children) while you get away from the unit for a few moments after the death of your child (1.05).

 

The least intense facilitators:

The 3 items perceived as the most intense facilitators to providing EOL care including: 1)unit designed so family has a place to grieve in private. (1.70), 2) physicians who put hope in real tangible terms by saying to the family that, for example, only 1 of 100 children in this child’s condition will completely recover (1.75), and 3) allowing family unlimited access to the dying child even if it conflicts with nursing care at times. (1.78) (Table3).

Perceived facilitators magnitude:

The PFM scores ranged from 1.08 to 5.75 (Table 3, Figure 3).The top facilitator that received highest PFM score (5.75) was “providing a peaceful, dignified bedside scene for family members once the child has died”. The 2 next items with the highest PFM scores were:1) physicians agreeing about direction of child care (5.25), and 2) nurses offer verbal and behavioral support to each other (5). The 3 highest PFM score items also achieved the highest MIS and the highest MFS respectively. The 2items with the lowest PFM scores were: 1) letting the religious leader take primary care of the grieving family (108), and 2)having a unit schedule that allows for continuity of care for the dying child by the same nurses (1.76).


 

Figure1 - Facilitators of providing pediatrics end of life care ranked by MFS

Figure2 - Facilitators of providing pediatrics end of life care ranked by MIS

Figure3 - Facilitators of providing pediatrics end of life care ranked by PFM

 

 


DISCUSSION:

Based on the results (table3, figure 1and 2), all the facilitators had higher MIS than the MFS. This finding may be elucidates the discrepancy between what nurses believe to be facilitating and what actually happens. It might be due to inappropriate environmental and organizational conditions such as lack of nurses' autonomy, inadequate knowledge and education regarding EOL care, lack of interdisciplinary work and palliative care team, staffing and heavy work load, low level of participation in decision-making, and lack of powerful supportive work conditions.

 

The nursing professions are always involved with the subject of autonomy because most of them are employed and subordinated to the authority of organizations.26 They tried to have more autonomy and educational quality while the medical association struggled to keep large numbers of nurses and subordinated role for nursing.27 In the context this fact is more highlighted. Iranmanesh et al, 28reported that participant Nurses in Southeast of Iran had moderate level of autonomy. In the Iranian context the level of nurses’ professional autonomy seems to be low.29

 

Insufficient participants’ knowledge in the field of PC could also be another reason for discrepancy between what nurses believe to be facilitating and what actually occurs. Based on the results, only 22.5% of the participants were educated about EOL care. According to Iranmanesh et al,30 which assessed nurses’ knowledge about PC in the same context, nurses had insufficient knowledge about PC. PC education is neither included as specific clinical education nor as a specific academic course in the Iranian nursing educational curriculum.

 

The BSC nurses’ curriculum contains only 2–4 hours of theoretical education about death and caring for a dead body. Recently, just 1 credit unit about PC is added to MSc of critical care nursing curriculum. Furthermore According to Iranmanesh et al, 30 in spite of the high prevalence of death and life-threatening disease in this part of the country, there is no specific PC unit to focus on patients ‘care at the EOL, so patients who need special PC and those who need routine nursing care are in the same wards (ICUs and oncology wards). PC has not been accepted by Ministry of Health and medical education, as well as by the administrative and political health authorities. Anyhow, palliative OPD has been newly established (from 3 years ago) in two large cities (Tehran and Isfahan) and one of the cities (Isfahan) has also a PC unit. Therefore such deficiencies affect the nurses’ ability and competency to change the existing situation in order to provide an appropriate EOL care. 

 

The highest PFM score was “providing a peaceful, dignified bedside scene for family members once the child has died”. This result is in agreement with previous studies14 - 18, 31. This item is an element within a nurse’s control. Providing support to families around the time of death may positively affect long term bereavement outcomes and remains a valuable memory for them for years.14 According to Palliative Care Australia, 32Every culture has customs and beliefs that may shape the way parents wish their child to be treated or influence how parents manage the care of their children. Bauer et al, 33 stated that all the religions strive for a peaceful experience at the EOL. They go on that praying for and being with the dying child at the time of death is highly valued across these cultures, so the PC professionals should plan for the care of the family and community along with that of the child to assure “good death” and dignity with minimal suffering. In 2009 Iran’s Ministry of Health recognized and required administration of clinical governance programs in the whole country’s hospitals. According to this program respecting the patient and his/her family is one of the fundamental in providing high quality care. In all part of hospitals written boards containing veneration of clients and their family indicates this fact. Therefore nurses are highly required providing a peaceful and dignified environment for patients and families as well. “Having physicians agreeing about direction of child care” ranked as the second highest PFM score. Earlier studies found the similar result.14 -18, 31Having physicians agreeing about direction of child care avoid the nurse being caught in the middle of disagreeing, which allows himor her to spend more time on patient care.18 In line with existing literature, collaboration among physicians should be the basis to providing quality of EOL care. 34, 35 The advantages of collaboration are twofold: first, communication and sharing among experts allow treatment to proceed in the same direction leading to integrated care, and second, the consistency of information facilitates parental decision making.36

 

The third high PFM score was “nurses offer verbal and behavioral support to each other”. Comparing to similar studies15, 17, 18 this item achieved significantly a high PFM score. This finding could be relevant with the innate characteristic and temperament of people in this part of country which are warm, kind and supportive. Over ally Iranian are very emotional, compassionate and sympathetic. On the other hand, nursing workload and lack of psychological support services for nurses in the context is very obvious. So nurses’ verbal and behavioral supporting of each other seems necessary to eliminate their stress emerged in their work settings.

 

“Letting the religious leader take primary care of the grieving family”, comparing with the other studies14 -17, 31 achieved the first lowest PFM score. It also gained the lowest mean frequency which reveals lack of this support strongly. Unlike most Western countries where chaplain works as a team members in interdisciplinary teams and take an important role to address spirituality in healthcare system.37In Iran’s healthcare system as a Muslim country appropriate access to spiritual care and chaplains in EOL care providing spiritual support for dying patients and their families is not available. According to Bennett, 4part of what makes people human is the need to find meaning and purpose in death through spirituality, faith, religion and cultural values and attention to people’s needs should be the approach of all healthcare professionals. This is especially vital during the vulnerable period of EOL during childhood.38While some children and teens perceive positive outcomes such as improved comfort and health related to their spirituality, they sometimes struggle to find meaning and purpose in their lives.39Lack of chaplains in EOL plus staff shortages certainly increases the workload for nurses and causes them to simultaneously deal with patients whose lives are being maintained and those whose lives are ending, therefore they may feel too much burden to bear these situations alone. 12

 

“Having a unit schedule that allows for continuity of care for the dying child by the same nurses” was the second lowest PFM score which is in disagreement with the moderate rank of this item in prior studies15 – 17, 31.The acquired moderate intensity rank (12) of this facilitator is reflected in our participants’ desire to access this help despite its lowest frequency rank (23)which represents unavailability of this item in our context. Probably this finding is consistent with significant nursing staff shortage as well as lack of specific pc units in the context as mentioned before. Iranian nurses particularly those works in critical care units and oncology wards, are overworked because of the nursing shortage in the healthcare system. 25 According to Morgan, 8it is overwhelming to have a patient who is actively dying and have several other patients to care for at the same time therefore such a patient assignment will easily leave the nurse feeling overwhelmed and highly stressed.

 

CONCLUSION:

The study finding revealed that the items’ MIS was higher than their MFS which indicates nurses’ deep understanding of these assistive factors dimensions as well as their tendency to access such helps in spite of their low frequency. Of the ten high PFM score facilitators related to family, nurses, physician and organizational issues, more than half (6) were the items which were in nurses’ control. The result may indicate a long distance between what nurses believe to be facilitating and what actually happens. Therefore some efficient strategies are needed to improve the current situation. The lack of education and experience as well as some cultural and professional limitations may have contributed to this distance. Creating a reflective narrative environment in which nurses can express their own feelings about death, dying, and PC seems to be as an effective approach to identify the influential factors on their interaction with people who are dying. A continuing PC education may need to be added to the nursing curriculum in order to improve the quality of care at the EOL. 

 

In the organizational context, mainly nurse managers are also responsible for creating an environment that is supportive and enables nurses to improve their quality of terminal care. Since  EOL care is multidimensional, it is suggested to conduct some appropriate qualitative studies to deeply understand nurses' experiences/perceptions about facilitators of providing EOL care to terminally ill pediatric patients to develop valuable instruments in order to assess most important issues around this topic.

ABBREVIATIONS:

NSCCNR-EOLC:  National Survey of Critical Care  Nurses’  Regarding End-of-Life Care

EOL:  End Of Life

PC: Palliative Care

PPC: Pediatric Palliative Care

ICU: Intensive Care Unit

PICU: Pediatric Intensive Care Unit

NICU: Neonatal Intensive Care Unit

PFM: Perceived Facilitators Magnitude

MFS: Mean Frequency Score

MIS: Mean Intensity Score

ACT: Association for Children with Life-Threatening or Terminal

Conditions and Their Families

ONS: Oncology Nursing Society

EAPC: European Association of Palliative Care

CHI: Children’s Hospice International

 

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Received on 06.07.2014          Modified on 25.08.2014

Accepted on 06.09.2014          © A&V Publication all right reserved

Asian J. Nur. Edu. and Research 4(4): Oct.- Dec., 2014; Page 394-402