Nursing Staff’s Perception of Barriers in Providing End-of-Life Care to Terminally Ill Pediatric Patients in Southeast Iran

Nursing Manuscript
Nursing Staff’s Perception of Barriers in
Providing End-of-Life Care to Terminally Ill
Pediatric Patients in Southeast Iran
Sedigheh Iranmanesh, PhD, MSc 1
, Marjan Banazadeh, MSc 1
,
and Mansoure Azizzadeh Forozy, MSc2
Abstract
Objective: To determine pediatric nurses’ perceptions of intensity, frequency occurrence, and magnitude score of selected
barriers in providing pediatric end-of-life (EOL) care. Method: A translated modified version of National Survey of critical care
Nurses’ s Regarding End-of-Life Care questionnaire was used to assess 151 nurses’ perceptions of intensity and frequency occur-
rence of barriers in caring for dying children. Results: The highest/lowest perceived barriers magnitude scores were ‘‘families not
accepting poor child prognosis’’ (5.04) and ‘‘continuing to provide advanced treatment to dying child because of financial benefits
to the hospital’’ (2.19). conclusion: More high perceived barriers by nurses were family-related issues. One of the possible causes
of such deficiencies was lack of palliative care (PC) education/PC units in Iran. Thus, developing EOL/PC education may enhance
nurses’ knowledge/skill to face EOL care challenges.
Keywords
nurses’ perception, barriers, end-of-life care, terminally ill children, Southeast Iran
Introduction
The idea that a child may die is simply unimaginable to most
people, yet children die daily.1 According to Morgan,2 when
a child dies, this cycle seems unnatural, causing loss of human
potential, and dreams quickly shatter.2 Children represent
health and hope, and their death calls into question the under-
standing of life. 3 Unfortunately, annually about 50 000 children
die in the United States. 4 Of these, over half die during the first
year of life. 5 A child’s chronic illness may progress to the point
of becoming a terminal illness that deemed to be incurable, ulti-
mately leading to death. 1 Unlike adult populations, who more
frequently die at home or in hospice-type settings, more than
half of the children with acute and chronic illnesses die in inpa-
tient hospital settings. 6 So providing comprehensive and com-
passionate end-of-life (EOL) care for these children within a
family-centered and developmentally appropriate context is
necessary. 7 End-of-life care is an important method of care for
infants and children with terminal illness through the preven-
tion or alleviation of physical, emotional, social, and spiritual
suffering. 8 Unfortunately, the transition to EOL care is often
late and abrupt in pediatrics 9 and seems inherently unnatural
in the mind of many parents and doctors, who often struggle
to accept that nothing more can be done for a child.10 Pediatric
palliative care (PPC) is a relatively new and developing speci-
alty,11 which begins when an illness is diagnosed and continues
regardless of whether or not a child receives treatment directed
at the disease. 12 Health care professionals face numerous obsta-
cles and challenges while providing care to this unique popula-
tion of clients and their families, 2 which differ from those cited
for adults. 13 Although interdisciplinary care is essential for
EOL care quality, nurses play the key role of child-family
advocate. 1
Reviewing literature indicated a few studies13-15 that exam-
ined the views of pediatric nurses on providing pediatric EOL
care. 14 In Western countries including United States, Beck-
strand et al14 using modified version of National Survey of
critical Nurses’ Perceptions Regarding End-of-Life Care ques-
tionnaire asked 474 pediatric intensive care unit (PICU) nurses
to rate size and frequency of listed obstacles and supportive
behaviors in providing pediatric EOL care. They found that the
item ‘‘language barriers’’ was the highest perceived obstacle
with both the highest mean intensity and frequency scores. 14
In Spain, Iglesias et al16 used the samequestionnaire to deter-
mine the relative importance of helpful behaviors and obstacles
1 Razi faculty of Nursing and Midwifery, Kerman, Iran
2 Neuroscience Research Center, Institute of Neuropharmacology, Kerman
University of Medical Sciences, Kerman, Iran
Corresponding Author:
Marjan Banazadeh, MSc, Razi faculty of Nursing and Midwifery, Kerman,
86618 Iran.
Email: [e-mail]
American Journal of Hospice
& Palliative Medicine®
1-9
ª The Author(s) 2014
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DOI: 10.1177/1049909114556878
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that affect EOL care for pediatric patients and their families in
PICUs as perceived by nurses. Nurses viewed ‘‘evasive physi-
cians’’ and ‘‘families are not accepting of a poor prognosis’’ as
obstacles. 16 In California, Davies et al13 also conducted a study
using a self-report questionnaire to explore the barriers to pal-
liative care (PC) experienced by pediatric health professionals
(117 nurses and 81 doctors). Approximately one half of the
respondents reported ‘‘uncertain prognosis,’’ ‘‘family not ready
to acknowledge incurable condition,’’ and ‘‘language barriers’’
as frequently or almost always occurring barriers. 13 In Egypt,
Moawad 15 using the NSCCNR-EOLC questionnaire assessed
94 PICU and NICU nurses’ perceptions of obstacles and sup-
portive behaviors in providing EOL care. He revealed that the
most perceived obstacle by nurses was ‘‘child having pain that
is difficult to control or alleviate.’’15
To our knowledge, in the context of Iran, no study has been
conducted to assess barriers in providing pediatric EOL care.
This study, thus, conducted to assess nurses’ perceptions of
intensity, frequency, and magnitude score of selected barriers
in providing pediatric EOL care in pediatric units in Kerman
hospitals.
Context
Death in different cultures has become inextricably linked in
the particular ceremonies and customs, which originated in
inconsolable affections and feelings that has been painful expe-
rience. 17 Therefore, it seems necessary to mention the context
in this study. Iran, officially the Islamic Republic of Iran, is a
diverse country consisting of people with many ethnic back-
grounds cemented by the Persian culture. The main language
spoken is Farsi or Persian. 18 Persian literature, which is heavily
informed and influenced by Islamic and mystical spiritual
beliefs, is fraught with poems and stories that portray death
as a glorious incident that takes people from one stage of their
material/mortal existence through to the realm of divine
immortality. 19,20 In the most celebrated and the great mystical
Persian poems, Masnavi, Rumi narrates that death is the time of
release from this cage of the body; the time when the bird of the
soul flies free. The body, like a mother, is pregnant with the
spirit-child: death is the labor of birth. All the spirits who have
passed over are waiting to see how that proud spirit shall be
born.21 Health care in Iran is based on the following 3 pillars:
the public-governmental system, the private sector, and non-
governmental organizations 22 (NGOs). According to Mehr-
dad,23 health care and public health services are provided
through a nation-wide network consisting of a referral system,
starting at primary care centers in the periphery going through
secondary-level hospitals in the provincial capital and tertiary
hospitals in major cities, which is. managed by Ministry of
Health and Medical Education (Figure 1). He goes on that there
are many NGOs active in health issues in Iran. Non-
governmental organizations are mainly active in special fields
like breast cancer, diabetes, thalassemia, and children with can-
cer (MAHAK), which are run by charitable foundations. This
organization was founded in 1991. It is funded entirely by
donations and has supported 11 505 children over the past 17
years. 23 Iranian children are cared for within the primary health
care (PHC) system up to the age of 6 years. 24
According to Lankarani, 25 the expansion of medical educa-
tion despite suffering from an 8-year imposed war, as well as
facing a 29-year lasting sanction has fulfilled all the health and
medical sciences needs in higher education (as it is indicated in
Table 1). In line with many developing countries, 33 PHC ser-
vices in Iran do not offer any kind of palliative and EOL care
to patients and their families. Although providing specific care
services is highly recommended within the second and third
levels of the PHC system in the country,34 PC has not been
accepted by the Ministry of Health and Medical Education,
as well as by the administrative and political health authorities.
However, outpatient palliative department (OPD) has been
newly established (since 3 years) in 2 large cities (Tehran and
Isfahan), and one of the cities (Isfahan) also has a PC unit. 35
Palliative care and PPC education is neither included as spe-
cific clinical education nor as a specific academic course in the
Iranian nursing educational curriculum. The BSc nurses’ curri-
culum contains only 2 to 4 hours of theoretical education about
death and caring for a dead body. Recently, just 1 credit unit
about PC was added to MSc of critical care nursing curriculum.
Method
Design
This is a cross-sectional, descriptive study that examined pedia-
tric nurses’ perceptions of intensity and frequency occurrence
of selected barriers in caring for dying children. Approval of
the study was received by Kerman Medical University (KMU).
There was also an approval from the heads of 2 hospitals super-
vised by KMU, prior to the collection of data.
Sample
The sample consists of staff nurses working in pediatric units
including pediatric general units, pediatric oncology units, PICU,
and pediatric emergency units in 2 hospitals (Shahidbahonar andUniversity ofProvinceSchoolsTeaching hospitalsDistrict generalhospitalDistrict’s healthnetworkDistrict healthcenterUrban health centerHealth postRural health centerHealth houseMinistry of Health andMedical Education
Figure 1. Health system network in Iran. 23
2 American Journal of Hospice & Palliative Medicine®
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Afzalipour) supervised by KMU. Afzalipour is a general hos-
pital with 462 active beds and Shahidbahonar is a trauma hos-
pital with 367 active beds. These hospitals located in an area
called Kerman in the center of Kerman Province in Southeast
Iran, which provides medical services for the whole province.
All nurses working in the aforementioned units were surveyed.
Staff nurses who were considered eligible for the study had at
least six-months working experience in these units and pro-
vided care to dying children.
Background Information
First, a demographic questionnaire consisting of 17 questions
that was assumed to influence pediatric nurses’ perceptions
Table 1. Health Indicators in Iran.
Indicators Rate Indicators Rate
Population 26 77 352 373 Life expectancy, average (years) 27 71.4
World population rank 17th Total health care spending in 2013. 28 US$50 billion
World area rank 18th Local health services accessibility 27 Urban 100%, Rural 86%
Religion, % World health care system rank 28 45 th
Shia Muslim 89 Health houses/inhabitants 1 /1200
Suni Muslim 10 Health Houses/inhabitants 1/1200
Christian, Zoroastrian, Bahai, and Jewish 1 Rural Health Centers/inhabitants 29 1/7000
Mortality rate/1000 live births Health care coverage 27 73% of total population
Infants 18.9 Medical schools 30 52
Under 5 years 22 Medical students 1 million
Cause of death in children under 5 years, % 31 Professor of medicine 20 000
Prematurity 23 Hospital beds 120 000
Congenital anomalies 19 Village clinics 20 000
Other disease 15 Doctors 100 000
Acute respiratory infections 13 Nurses 120 000
Birth asphyxia 11
Injuries 7
Neonatal sepsis 4
Diarrhea 4
Under 5 years cancer rate annualy 32 1500-200001234567895.044.974.964.94.864.684.334.264.24.124.074.033.943.933.673.653.53.413.393.373.233.242.962.942.872.732.522.512.252.19PBM
Figure 2. Barriers of providing end-of-life care to terminally ill children ranked by PBM.
Iranmanesh et al 3
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