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.
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.
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.
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.
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)
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 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 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 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 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).
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.
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