1. No category

Why Do Some Parents Refuse Consent for Lumbar Puncture on Their Child? A
Qualitative Study
Hassib Narchi, Ghassan Ghatasheh, Noora Al Hassani, Layla Al Reyami and Qudsiya
Khan
Hospital Pediatrics 2012;2;93
DOI: 10.1542/hpeds.2011-0034
The online version of this article, along with updated information and services, is
located on the World Wide Web at:
http://hosppeds.aappublications.org/content/2/2/93
Hospital Pediatrics is the official journal of the American Academy of Pediatrics. A monthly
publication, it has been published continuously since 2012. Hospital Pediatrics is owned,
published, and trademarked by the American Academy of Pediatrics, 141 Northwest Point
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RESEARCH ARTICLE
Why Do Some Parents Refuse Consent
for Lumbar Puncture on Their Child?
A Qualitative Study
AUTHORS
Hassib Narchi, MD, FRCPCH1, Ghassan
Ghatasheh, MD2, Noora Al Hassani, MB BS2,
Layla Al Reyami, MB BS2, Qudsiya Khan, MB BS,
MRCPCH3
1
Department of Pediatrics, Faculty of Medicine &
Health Sciences, Al Ain, United Arab Emirates
2
Tawam Hospital, Al Ain, United Arab Emirates
3
Al Ain Hospital, Al Ain, United Arab Emirates
KEY WORDS
lumbar puncture, spinal tap, procedure, consent,
qualitative study
ABBREVIATION
LP, lumbar puncture
www.hospitalpediatrics.org
doi:10.1542/hpeds.2011-0034
Address correspondence to Hassib Narchi, MD,
FRCPCH, Department of Pediatrics, Faculty of
Medicine & Health Sciences, United Arab
Emirates University, Al Ain, PO Box 17666,
United Arab Emirates. E-mail: hassib.narchi@
uaeu.ac.ae
HOSPITAL PEDIATRICS (ISSN Numbers: Print,
0031 - 4005; Online, 1098 - 4275).
Copyright © 2012 by the American Academy of
Pediatrics
FINANCIAL DISCLOSURE: The authors have
indicated they have no financial relationships
relevant to this article to disclose.
FUNDING: This project was supported by
a research grant NP/10/06 from the Faculty
of Medicine & Health Sciences, United Arab
Emirates University.
abstract
OBJECTIVE: Qualitative analysis of the attitudes, beliefs, and perceptions of
parents who refuse consent for lumbar puncture (LP) on their child.
METHODS: We performed prospective, semistructured, face-to-face interviews
with 24 families declining consent for LP in their child (aged between 1 month
and 10 years of age), in 2 hospitals, over a 1-year period in the United Arab
Emirates. The questionnaire included open-ended questions to allow parents
to discuss their beliefs, concerns, and expectations. Content analysis of the
transcripts was performed on how parents experienced the issue: their behavior,
perceptions, and beliefs, as well as their opinions on what might have made
them consent. Identified themes resulting from that analysis were labeled and
coded before reducing them into categories and generating a Pareto chart.
RESULTS: Seven (29%) families were unfamiliar with LP indications and 3 had
the impression that LP was also therapeutic. The emerged themes were fear
of complications by 18 (75%), perception that LP was unnecessary by 5 (21%),
and distrust of the motives behind the request for consent. Fear of paralysis and
conviction that LP is unnecessary encompassed 80% of the causes for refusal.
Eleven families (46%) stated that nothing would have made them consent, and
10 (42%) would agree only if the child looked unwell or deteriorated.
CONCLUSIONS: A better understanding of parents’ perceptions, beliefs, and
fears will help develop appropriate solutions to their refusal of LP consent.
INTRODUCTION
Although diagnostic lumbar puncture (LP) is a commonly performed procedure,
some parents fear having it performed on their child and refuse to consent. This
may result in admission of the child to hospital for empirical intravenous broadspectrum antibiotic treatment or increase the duration of hospital stay, costs of
hospitalization, and risk of resistance to antibiotics. There is also the lost opportunity to administer prophylaxis to contacts in cases of undiagnosed bacterial
meningitis, as well as the additional psychological and emotional strain on the
child and the family. The prevalence of parents’ refusal to give consent for LP and
some of their underlying reasons have only been reported in 2 studies.1,2 Because
there has never been a systematic, qualitative analysis of the underlying factors
for this refusal, no effective strategies could be offered to remedy this problem.
In our hospitals in the United Arab Emirates, as shown in previous audits, at least onethird of parents refuse to give such consent (H.N., unpublished material, 2007). We
undertook a qualitative analysis of their perspectives, beliefs, and attitudes behind
such refusal in an exploratory and hypothesis-generating exercise.3–6 The results
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would allow a detailed understanding
of families’ experiences, motives, views,
feelings, wants, needs, and concerns
regarding the giving of consent, directly
from their own perspective. The aim is
to suggest appropriate solutions and
strategies to minimize this refusal.
METHODS
This was a prospective study of children
whose parents refused to give consent
for a diagnostic LP, undertaken in the
emergency and the inpatient pediatric
departments of 2 teaching hospitals
(Tawam and Al Ain hospitals) from
October 2009 to October 2010. Previous
parental consent is always required,
and analgesia or sedation is not routinely offered. Ethical approval for the
study was granted by the Al Ain District
Human Research Ethics Committee
(Ref: 09/62).
Parents of children (between 1 month
and 10 years of age) who were offered
diagnostic LP during their admission
and who signed the informed consent
form for the interview were included.
Children who had already had a LP
within 2 weeks and parents who
did not consent to the interview were
excluded.
The clinical and laboratory data were
retrieved from the children’s medical
charts. The coinvestigators, not directly
involved with the clinical management
of the children, were trained in the
interview process and transcription
before the start of the study. To minimize potential families’ response bias,
they were interviewed 1 day after their
child’s admission. This was when their
anxiety was less, and they were less
likely to fear management bias by the
physician, should they not participate.7–11
Those who discharged their child from
the emergency department against
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VOLUME 2 • ISSUE 2
medical advice were interviewed before
their departure. After obtaining signed
informed consent, a face-to-face semistructured interview was conducted
in English, or Arabic if necessary, by
the coinvestigators (fluent in both
languages). An interpreter was also
available if needed. The duration of
the interview did not exceed 20 minutes to minimize inconvenience to
the families. The questionnaire was
designed with open-ended questions
to allow parents to openly discuss
their beliefs, concerns, and expectations. The collected information
was directly transcribed verbatim on
the questionnaire form by the trained
interviewers during the interview. No
audio or video recordings were used,
because this was not deemed acceptable by the local culture. The data
were analyzed by the principal investigator (H.N.).
The data were anonymized, and qualitative analysis involved content analysis
of the text with textual descriptions of
how parents experienced the issue,
their behavior, beliefs, opinions, and
emotions. Recurrent themes were identified, labeled, and coded to identify
differences and similarities between
them before reducing them into categories. A Pareto chart was then generated: the identified themes on the
horizontal axis, the frequency of their
occurrence in descending order (their
relative importance) as bars on the
vertical axis, with a superimposed line
showing their cumulative percentage.
This chart, a tool of quality improvement, is based on the Pareto principle
(the “80/20 rule”), stating that 20% of
the causes (or themes in this study) are
responsible for 80% of the results. This
helps prioritize the few most important
themes with the greatest cumulative
effect on the problem.12–16
www.hospitalpediatrics.org
RESULTS
From a total of 55 families who were
asked to give consent for an LP on their
child, 24 (44%) declined to give consent.
All agreed to be interviewed, including
the only one (4%) who left the emergency department despite medical
advice. All interviews were conducted in
English, and no translator was required.
The demographic data are shown in
Table 1. The indications for LP and the
details of the consent procedures are
shown in Table 2. Whereas the majority
of respondees were males, there were
no differences in responses noted by
gender.
Parents’ knowledge, understanding,
and beliefs are shown in Table 3. Seven
families (29%) had no previous knowledge of the indications for LP, and 3
had the impression that LP was also
therapeutic. When asked about the
TABLE 1 Demographic Data of Families
Refusing LP Consent
No. of families
Consent refused by
Father alone
Mother alone
Both
Interviewee
Father alone
Mother alone
Both
Other
Father
Median age (range), y
Employed
Education
Primary
Secondary
University
Mother
Median age (range), y
Employed
Education
Primary
Secondary
University
Child’s median age (range), mo
24
3
5
16
17
3
3
1
30 (22–60)
19
4
14
4
26 (18–39)
4
3
14
5
2 (1–38)
Values given are numbers unless stated otherwise.
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TABLE 2 Lumbar Puncture: Results From Documented Consent Process and Parental
One family stated:
Recall During the Interview
Indications for LP (alone or in combination)
Fever
Convulsions
Fever with convulsions
Sick-looking
Drowsiness, lethargy
Irritability
Consent for LP was requested in
Emergency department
Pediatric ward
Consent was requested by
Resident
Specialist
Attending physician
A more senior doctor involved in seeking consent
No. of attempts to obtain each consent, median (range)
Time in minutes spent to obtain each consent, median (range)
Advantages of consenting for LP were explained to family
Disadvantages of refusing consent were explained to family
Family was told that LP is the only reliable way to diagnose or exclude meningitis
Family was informed that LP carries no risks
Parents were offered to be present during the procedure
Other alternatives were offered
15 (62)
4 (16)
4 (16)
3 (12)
2 (8)
2 (8)
11 (46)
13 (54)
4 (16)
17 (71)
3 (12)
10 (42)
3 (1–6)
12 (5–60)
21 (87)
6 (25)
17 (71)
5 (21)
1 (4)
11 (46)
Values given in number (%) unless stated otherwise.
reasons for not consenting, 18 (75%)
said that it was because of fear of
complications from the procedure: 14
(58%) feared paralysis, 4 feared pain
(16%), and 1 feared scoliosis. The total
exceeds 18, because some families
cited >1 cause. Illustrative comments
made are as follows:
“I was scared that inserting the needle in his back could cause damage
to the spinal cord.”
“My child is very young and putting
a needle in his back could hurt him
and injure his nerves.”
“We were afraid that the procedure
would leave him with a deformed
and twisted back (scoliosis) as he
is very young and his spine has not
fully grown yet.”
“The brain is very sensitive to injury;
putting a needle in the back, which
is connected to the brain nervous
system may lead to development
delay and epilepsy.”
Five families (21%) also felt that the
procedure was unnecessary, as stated
below:
“My son had no signs of meningitis
and the whole family felt that LP
was not necessary.”
“My daughter was not sick, she only
had a cold with fever when she had
the convulsion and was not looking
sick.”
“I felt that it would have been better to observe my son first, do some
tests for infection and discuss
LP only if there was evidence of
meningitis.”
“All my 3 other children had a cold
like my daughter, she was not sick,
and we all felt that she also only
had a cold.”
“My 2 other children also had
febrile convulsions when they were
young and did not require LP.”
“If the doctors truly believe that LP is
very safe and is done routinely, why
do they then ask us to sign a consent
form? If this is to protect themselves,
it must be because they know that
complications may occur sometimes
without telling us about them.”
Another family said:
“Why have we been asked for consent if the LP was so important for
the diagnosis and carried no significant risks? We would not have
objected if we were not explicitly
asked for consent.”
The main themes that emerged included:
fear of complications such as (1) paralysis, (2) pain, (3) the perception that
LP was unnecessary, and (4) distrust
of the motives behind the request for
consent (see Fig 1). Three categories
summarized these themes: fear, unconvinced, and distrust.
Eleven families (46%) stated that nothing would have made them change
their mind to consent to LP. Ten (42%)
would have changed their minds if the
child looked unwell or if the condition
deteriorated, 1 family if they were convinced that the child had something
other than a cold, 1 if they knew somebody who had had a LP and had no
complications, and 1 if the physician
requesting consent was more convincing. Some of their comments included:
“Nothing at all would have made us
change our mind to give consent.”
“I might have given consent if my son
looked very sick or if his condition
became worse while in hospital.”
“We might have agreed for LP if our
other children did not have a cold
as our daughter may not have the
same condition.”
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TABLE 3 Parents’ Knowledge, Understanding, and Beliefs Regarding LP
Had no previous knowledge on why LP is done
Knew specifically that LP involved laboratory studies to diagnose meningitis
Knew that LP allows the diagnosis of convulsions or infections
Knew that bacterial meningitis could result in 1 or more of the following complications
Death
Paralysis or spasticity
Deafness
Blindness
Convulsions or epilepsy
Developmental delay
Knew that the procedure involved inserting a needle in the back
Heard of the risks of LP from 1 or more of the following
Relatives
Friends
Other doctors
Televised program
Knew somebody who had a LP before
A relative
A family friend
Knew of 1 or more complication occurring after LP in that individual, such as
Paralysis or spasticity
Severe pain
Spinal deformity, scoliosis
Delayed walking or abnormal gait
Understand the advantages of doing a LP
Diagnosing or ruling out meningitis
Normal CSF results would result in decreases hospital stay and alleviate the need
for antibiotic therapy
Understand the disadvantages of not doing a LP
Believe that the risks of performing LP outweigh the risk of not diagnosing meningitis
Prefer seeking the opinion of a relative before deciding to consent or not
Prefer to have a more senior doctor involved in requesting consent
7 (29)
11 (46)
6 (25)
18 (75)
12 (50)
5 (21)
5 (21)
5 (21)
5 (21)
4 (16)
16 (66)
8 (33)
13 (54)
8 (33)
2 (8)
1 (4)
12 (50)
11 (46)
1 (4)
9 (37)
2 (8)
4 (16)
3 (12)
4 (16)
13 (54)
13 (54)
4 (16)
11 (46)
15 (62)
14 (58)
7 (29)
The issue of informed consent for procedures, in general, is not unique to our
environment. It is a universal theme, some
aspects of which continue to be debated
in the United States. Some studies have
identified a lack of uniform practice for
this consent in hospitals,17 and others
have tried to define a scope for implied
consent in the emergency department
setting.18 Providing a universal consent form for procedures in critically ill
adults has also been suggested.19 The
specific issue of consent for LP in adult
patients has also generated a debate.20
More directly relevant to our discussion,
informed parental consent for LP in their
child has also been an ongoing subject of
discussion for the past 2 decades in the
North American literature.21–23 Because
there are also similar reports from Asian
countries, the universal nature of this
problem is obvious.1,2 It is clear, therefore,
that, although this study was performed
in the United Arab Emirates, it is also relevant to other settings.
Values are given in number (%) unless stated otherwise. CSF, cerebrospinal fluid.
“The doctor who informed me that LP
was needed was not convincing when
explaining why it was needed”
These themes were summarized in
2 categories: fear and unconvinced.
“I think that I might have given consent if I personally knew somebody
who had LP in the past and did not
develop any complications.”
Obtaining consent for a procedure
involves an interaction between parents’
beliefs, perception or understanding of
their child’s illness, and doctors’ skills
at convincing them of the necessity
of the procedure. A balance must be
struck between the robustness of the
indication and the advantages versus
the risks of performing that procedure
or not. Exploration of the beliefs, fears,
concerns, and expectations of parents
refusing to consent to LP directly provided us with their personal perspective on this process, which should help
us develop strategies and solutions to
tackle this problem.
The main themes that emerged and
that might make the parents consent
to LP included the following: (1) fear
that their child was sick or worsening, (2) a physician who was more
convincing regarding that LP is truly
necessary because meningitis is suspected, (3) a physician addressing
their unfounded beliefs, such as their
child did not have a cold, as well as (4)
knowledge of somebody who did not
have a complication after LP (see Fig 2).
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DISCUSSION
www.hospitalpediatrics.org
The main reasons behind parents’
refusal to consent to LP in this study
included fear of complications, their
distrust of the physician’s motives behind
seeking consent, and their perception that LP was unnecessary. Fear of
paralysis or severe pain has also been
found in other studies.1,2
Parental perception that LP is unnecessary and their distrust of the physician’s
motives behind seeking consent must
also be addressed. Distrust of the physician’s motives is illustrated by the 2 families who wondered why it was necessary
to ask for consent if the procedure
carried no risks and was so important for the diagnosis. They also specifically stated that they would not have
objected if they had not been explicitly
asked for consent. The way physicians
approach the issue of LP with parents
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HOSPITAL Pediatrics ®
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that it is an issue, because all interviews were undertaken in English.
Although most parents wish to be
present when invasive procedures
are performed on their child,25–27 not
offering them that option was not
found to be a cause for refusal of the
procedure. Similarly, offering parents
alternative options when consent was
declined was not found to be an issue.
Although pain was reported to be a
reason for refusal by only 4 families,
none reported that pain prevention
measures would have made them
change their minds.
FIGURE 1 Pareto chart. Reasons for parental refusal of consent to LP.
is, therefore, an important determinant
of their acceptance. Explaining the very
low risks of the procedure must be mentioned, but, more importantly, the risks of
not performing it must also be stressed.23
Other potential causes of refusal to
give consent were given less emphasis
by parents. Although the language
barrier makes obtaining informed consent more difficult,24 we do not believe
FIGURE 2 Pareto chart. What might have made parents consent to LP?
Our study has some potential limitations. Although we found no significant
difference in the perceptions or concerns between parents who refused
consent in the emergency department
and those who refused after admission, it remains possible that other
unexplored reasons might still exist.
All interviews were in English, which is
the second language for most families.
However, we feel that the parents’ perspective was adequately expressed to
the interviewers who were also fluent
in Arabic. Although unlikely, it remains
possible, however, that this might not
have fully reflected some of the families’ opinions as it would have, if the
interview had been conducted in their
mother tongue. There is also the possibility of recall bias by parents when
the interview occurred on the day
after the request for consent, because
they may have forgotten some of their
beliefs and feelings when interviewed.
However, we feel that this is very
unlikely, because their thoughts and
concerns had been present for quite
some time and were unlikely, therefore,
to have significantly changed over that
very short time frame. It might also be
argued that all families should have
been interviewed shortly after consent
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was sought. However, it is known that
the timing of an approach to parents’
consent for research can be crucial,
because their judgment and capacity
might be clouded by the child’s acute
condition. Pressure can also be unwittingly placed on them through a wish to
please the physician or to ensure that
their child has priority in treatment. It
is advised, therefore, that parents be
given time to consider information so
that their decision is made away from
the clinically acute situation.9 It is also
recommended that they should not
be made to feel that they have a duty
to participate and should be free to
withdraw from the research project
without fear that medical care of their
child might be jeopardized.10,11 We also
analyzed whether cultural aspects
in this society might have influenced
the results. Although the United Arab
Emirates is a male-dominated society,
both parents together made the decision to refuse consent in 66% of the
cases. In addition, 12% of refusals were
made by the father alone (considered to
be the decision maker in this society),
but we could not capture whether
the mother agreed with this decision.
Interestingly, most of the remaining
refusals (21%) were made by the
mother alone (considered the principal caregiver in this society), when the
father was not present. Unfor tunately,
our data do not allow a detailed analysis of the degree of discordance in the
decision-making by the 2 parents which
could shed some light on this cultural
aspect in this particular society.
A better understanding of parents’
perceptions, beliefs, and fears will
help develop appropriate solutions to
their refusal of LP consent. Because it
addresses such a universal issue, this
VOLUME 2 • ISSUE 2
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Why Do Some Parents Refuse Consent for Lumbar Puncture on Their Child? A
Qualitative Study
Hassib Narchi, Ghassan Ghatasheh, Noora Al Hassani, Layla Al Reyami and Qudsiya
Khan
Hospital Pediatrics 2012;2;93
DOI: 10.1542/hpeds.2011-0034
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Services
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