Eur J Pediatr (2011) 170:13591363

DOI 10.1007/s00431-011-1530-6

REVIEW

Clinical practice
The approach to the deaf or hard-of-hearing paediatric patient

Anika S. Smeijers & Martina H. Ens-Dokkum &

Beppie van den Bogaerde &
Anne Marie Oudesluys-Murphy

Received: 4 May 2011 / Accepted: 28 June 2011 / Published online: 16 July 2011
# The Author(s) 2011. This article is published with open access at Springerlink.com

Abstract Approximately 1 child in 1,000 is deaf or Abbreviations

severely hard of hearing from birth, and the prevalence HI Hearing impaired, including both deaf and hard-of-
rises to about 1.6 per 1,000 in adolescents. Providing hearing patients
medical care for this group of children poses special CI Cochlear implant
challenges for professionals. To allow a medical consulta- dB Decibel
tion to proceed successfully and to the satisfaction of the
patient, it is essential that physicians are aware of the
different linguistic and cultural background of these
patients. Healthcare workers should be aware of the
possible higher incidence of comorbidities, sexual abuse Introduction and background information
and (psycho)social problems, of the possible pitfalls in
obtaining informed consent and higher frequency of Approximately 1 child in 1,000 is deaf or severely hard of
medical mistakes. This review describes the communication hearing from birth, and the number rises to about 1.6 per
challenges and medical, ethical and legal issues a physician 1,000 in adolescents. The causes are hereditary in 3039%,
can experience when faced with these patients. acquired in 1930% and the cause remains unknown in 31
48% of children [7, 8].
Keywords Children . Adolescents . Deaf . Hard of hearing . This review will not focus on the different levels of
Hearing impaired . Child development . Guidelines . hearing loss. The level of hearing impairment (HI) in
Informed consent decibels (dB) in children does not always have a linear
correlation with their actual audiological functioning. Some
children with up to 80-dB measured HI can function very
A. S. Smeijers
Department of Paediatrics, Spaarne Hospital, well with spoken language, whilst others with 30- to 40-dB
Hoofddorp, the Netherlands HI can face serious communication barriers. Knowing the
amount of decibel loss will therefore not always be helpful
M. H. Ens-Dokkum
Medical Department, Kentalis School for the Deaf,
in establishing whether an individual child is mildly,
Zoetermeer, the Netherlands moderately or severely hearing impaired. This is also true
for the use of traditional or advanced hearing aids (like
B. van den Bogaerde cochlear implants); their use is not predictive for the level
Department of Deaf Studies, Utrecht University
of functioning.
of Applied Sciences,
Utrecht, the Netherlands It is important to realize that when the cochlear implant
(CI) is turned off, the child is deaf once more. Especially in
A. S. Smeijers (*) : A. M. Oudesluys-Murphy young children, this may be the case during a significant
Department of Paediatrics, Leiden University Medical Centre,
part of the day. The CI has to be taken off, for example,
Antwoordnummer 10392,
2300 WB Leiden, the Netherlands when sleeping, taking a shower, during swimming lessons
e-mail: [email protected] or contact sports. Therefore, when we speak of the levels of
1360 Eur J Pediatr (2011) 170:13591363

HI, this is defined by the ability of the child to use or interfere with their ability to learn a language. Sign
understand spoken language. languages have complex grammatical structures which
The volume and quality of research in deaf healthcare allow access to information in a natural way and expression
facilities has not kept up with research on hearing of opinions, desires and abstract thoughts [1].
people. There are probably two main reasons for this. Most HI children have hearing parents who are not
First, a lot of research resources are used to explore the accustomed to sign language. The quality of the sign input
possibilities of improving (spoken) language skills and to these children is therefore highly variable, and there is
audiologic status. Most of these studies are (in)directly often less or insufficient interaction. Deaf children's access
funded by the hearing aid industry, which is not directly to spoken language is also limited, and the relative
interested in observational studies not involving their language deprivation can cause the vocabulary of (young)
hearing aid equipment. Second, there are few researchers HI children to be slightly delayed, but apart from this, their
qualified to do this work, in particular, when requiring language development should be comparable to their
sign language fluency and acceptance within the deaf hearing peers [5, 10]. This means that if a HI child shows
community/deaf culture [13]. Although some experts signs of a language delay or impairment, one should try to
expect that the challenges in providing health care for HI find the cause of this delay, considering also other possible
patients involve more than communication, cultural and causes than just a lack of language input. If no other causes
psychological challenges, we decided to exclude topics on can be found, the language input to the child should be
which no scientific evidence is available. improved.
People who are deaf from an early age often develop low
literacy skills. One of the reasons is the alphabetical
What is special about this group? writing system (letters). When sounds of a language
(phonemes) cannot be heard, it is necessary to memorize
HI children are faced with communicative, medical and for a given concept which combinations of letters are used
psychological challenges. It is important for the paediatri- and in which order. Another reason is that deaf people
cian to be aware of these issues and to be familiar with cannot use vocalization when reading. This means that they
some of the required communication strategies. However, are only able to read fluently those words that they have
the amount of information available on the special needs of read before and of which they have memorized the
this group is limited and not well known by hearing character construction. In medical consultation, a lot of
professionals. In this paper, we will give advice on how to infrequent and unfamiliar words are usually used. This is
communicate with HI children based on current available why writing down medical information for HI parents or
information and expert opinion. patients may be ineffective. If the main language used in
the home is a sign language, then a sign language
interpreter should be present during the consultation.
Deaf culture When somebody becomes HI at a later age and has been
able to develop normal literacy skills, it can be useful to ask
The deaf community constitutes a social and linguistic a speech-to-text interpreter to assist the consultation. This is
minority within the majority hearing culture [9, 11, 12]. A because writing down information by the physician him/
consequence is that problems may arise in communication herself is time-consuming, resulting in less information
with the majority hearing population due to cultural and being given and longer consultation time.
linguistic barriers. These communication problems are
comparable to those described in the interaction between Lack of knowledge about the human body and health
healthcare workers and patients from an ethnic minority and medical issues
group [14]. For example, deaf patients may be less assertive
or show inappropriate assertiveness when visiting a doctor. Education of HI children focuses primarily on their
language development, to the disadvantage of general
knowledge. Due to the HI, incidental learning is reduced,
Developmental issues particular to HI children which leads amongst other things to having less knowledge
and adolescents about their own body, health and feelings. They have little
information about what can happen during a visit to the
Language development and sign language doctor or during hospitalisation or what is relevant for the
doctor to know.
Generally, people born deaf or severely HI before the age of Doctors are used to giving information to suit the
5 years (prelingual phase) face environmental barriers that presumed (cognitive) capacities of patients and their
Eur J Pediatr (2011) 170:13591363 1361

parents. For instance, the lack of general and medical Studies show that untrained (family) interpreters leave
knowledge in adolescents is associated with limited out or misinterpret up to half the questions asked by the
cognitive abilities; therefore, a limited amount of simplified physician [4]. Consequently, there is a higher risk of
information is given. This also often happens when treating medical mistakes with potentially serious clinical conse-
intelligent and educated deaf children or parents. These quences. Importantly, sensitive or embarrassing problems
patients regularly report getting either incomprehensible are more likely to be avoided. These studies have been
information (the start level of information is too high) or done within speaking populations where the family
only limited information from their doctor (the start level of interpreters are native speakers of both languages. As
information is good but does not go deeply enough into the the signing skills of hearing parents are often limited, it
problem later). is probable that parents translating for their child deliver
even less quality than mentioned in the studies above.
Psychological aspects Although parents and the child or adolescent may not
agree, it is the decision of the physician or healthcare
Deaf people experience significantly more medical and worker to decide at what age and in which situations it is
psychological problems than hearing people [2] and often acceptable for parents to translate and when to bring in a
report a lower quality of life on social domains [3, 15]. Deaf professional interpreter.
children, even with a minor HI, often miss information
during play and are a target for bullying. Another issue is Physical examination and invasive diagnostic procedures
that the prevalence of sexual abuse is two to three times
higher amongst HI people than amongst their hearing peers. Even very young children receive information when a
This is possibly a result of communication barriers and lower medical intervention is about to take place. For example,
social skills [6]. When examining HI patients, it is important they are told by their parents that they will get a
to be aware of the possibility of psychological and or vaccination. They might not know what a vaccination is,
emotional problems and the high prevalence of sexual abuse. but they have already developed enough language skills to
understand that you will get means that something is
going to happen to them. This event can be either pleasant
What diagnostic issues are special for these children or unpleasant, but the child is, in a way, prepared. In HI
and adolescents? children, communication is often minimalised. This can
lead to insecurity, and when these events structurally occur,
Comorbidity it can also cause HI children to be less assertive than their
hearing peers or to a misdirected assertiveness. They are
Depending on the aetiology of the HI, these children have a taught that it is normal that things just happen without prior
higher chance of comorbidity. Especially when the cause is notice and without being able to influence events. There-
syndromic or acquired, the hearing loss may not be the only fore, it is important for the physician to always introduce
disability present. Patient delay in seeking medical help due actions, even when the child is still young.
to communication and cultural barriers or due to the lack of When a professional (sign) interpreter is present, the
health or medical knowledge may lead to extra morbidity. doctor must discuss with the patient whether or not the
interpreter will be present during physical examination. If
History taking not, a thorough explanation is mandatory prior to the
planned examination.
Paediatricians usually obtain some information directly After operations, it is often deemed unnecessary to provide
from the child as soon as he or she is able to communicate. the child with hearing aids immediately on waking. Usually,
When direct communication is complex, it is important to this is because children sleep without a hearing aid at home.
be aware of the possible loss of information. It can be However, there is a great difference between waking up at
useful to ask for the presence of a mediator such as a sign home and waking up in a hospital after surgery. It is a stressful
or speech-to-text interpreter or a healthcare worker who is and uncommon situation in which the child needs all his or her
trained in communication with patients who are HI. senses to understand the situation and therefore needs the
The parents of older HI adolescents and even young hearing aids directly after the procedure.
adults are often present at consultations because of the In most European countries, speech-to-text and sign
communication barriers. Parents often translate signs for interpreters are trained in assisting communication during
their child. Although it is much easier to communicate medical procedures. This way, the doctor can concentrate
whilst parents are present, it is also important to maintain fully on the procedure whilst the interpreter supports the
the normal rules of privacy. communication.
1362 Eur J Pediatr (2011) 170:13591363

It is important to be fully aware that magnetic resonance 4. Make sure you have informed consent of both the child
imaging (MRI) is not permitted when a CI is in place. If it and the parents, as necessary.
should be absolutely necessary, the magnet has to be 5. After operations, provide the child with hearing aids
removed surgically before a MRI scan may be performed. immediately on waking.

What treatment issues are particular to these children

Recommendations for outpatient services
and adolescents?
1. Indicate clearly on the file that the patient is deaf so that
In most European countries, the rules state that adolescents
the practice assistant or nurse (and possible substitutes)
between 12 and 14 (or 16) years of age have to give
is immediately aware of this.
informed consent, together with their parents, before an
2. Offer the possibility to make appointments and to ask
invasive procedure or proposed treatment is undertaken.
for repeat prescriptions by e-mail.
Adolescents between 16 and 18 years old are often allowed
3. Double the consultation time for deaf and hard-of-hearing
and expected to make these decisions themselves. As long
patients to be sure that there is enough time to make the
as the child is still (partially) dependent on the parents for
reason for the visit clear and for providing information.
communication, it is difficult to be sure whether full
informed consent is given by the child or only by the
parents. Therefore, it is always necessary to communicate
with the child (alone) and check whether he or she really Communication recommendations
understands all the information. When necessary, an
interpreter should assist. 1. Children and adults who use hearing aids or cochlear
implants have problems extracting sounds from their
surrounding, so make sure the consultation room is quiet.
Practical conclusion 2. Sit opposite the HI to enable your patient to follow
your mouthing whilst you speak.
To ensure a successful consultation, it is essential that 3. Discuss with the patient whether or not the interpreter
physicians are aware of the different linguistic and cultural will be present during physical examination. If not,
backgrounds of their HI patients so that they can take this thoroughly explain in advance the examination that you
into account. It can also be useful to have some knowledge plan to do.
about possible comorbidity (e.g. syndromes). Due to
communication barriers, it is easy to forget to give young
children the necessary information. Even though HI
adolescents may have communication needs different from Conflicts of interest This paper was not sponsored. All authors
report no conflict of interests.
their hearing peers, they have the same privacy needs. It is
up to the physician or healthcare worker to decide at what
age and in which situations it is acceptable for parents to Practical (local) information Italy: www.robertowirthfund.net
translate and when to bring in a professional interpreter. Netherlands: www.gezondecommunicatie.info
Also, in order to obtain informed consent, it may be United Kingdom: www.signhealth.org.uk
To our knowledge, other European countries do not have a central
necessary to have a sign or speech-to-text interpreter information point for healthcare workers who are faced with HI clients.
present.

Open Access This article is distributed under the terms of the

General recommendations Creative Commons Attribution Noncommercial License which per-
mits any noncommercial use, distribution, and reproduction in any
1. Discuss with your HI patient which method of medium, provided the original author(s) and source are credited.
communication will be used and how communication
can be improved.
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