24 | Community Practitioner August 2012 Volume 85 Number 8
Gillian McCorkell, Lead Nurse Research and
Development , Western Health and
Social Care Trust, Altnagelvin Area Hospital,
Glenshane Road, Londonderry
BT47 6SB, UK Northern Ireland
Catherine McCarron, Health Visitor, Western
Health and Social Care Trust,
Sylvia Blair, Community Midwife, Western
Health and Social Care Trust,
Vivien Coates, Assistant Director of Nursing
(R&D), Western Health and
Social Care Trust and Professor in Nursing
Research, Institute of Nursing
Research and School of Nursing, University of
Ulster, Western Health and
Social Care Trust, Northern Ireland.
In 1995 a cleft liaison service was developed in
a health and social care trust which comprises
primary and secondary care. The service team
includes hospital and community midwives,
health visitors and a consultant orthodontist
who had a particular interest, and experience
in the care of children born with a cleft and
often this work was in addition to their existing
roles. Anecdotal evidence indicated that the
service was of great help to parents but it had
never been formally evaluated. Therefore this
evaluation was designed to explore the needs
and views of parents who had a baby or child
with a cleft of the lip and or palate, using a
qualitative, cross sectional approach.
Following 20 parents interviews responses
were recorded, transcribed and a content
analysis completed. Three main themes emerged
relating to the parents’ emotional experiences,
their need for information and their experience
of caring for a child with a cleft.
This study has provided insight into the
service delivered by the team and reiterates the
need for retaining, maintaining and expanding
this specialist service to other localities.
Updating midwifery and health visiting staff in
terms of knowledge and expertise was implicit
to provide a responsive service to meet the
needs of the child and family.
Cleft diagnosis; Service evaluation; information;
Parental experiences of cleft lip and
A cleft of the lip and or palate is the most
frequent birth defect, the incidence quoted
as 1 in 700 live births (Cleft Lip and Palate
Association (CLAPA), 2009). In Northern
Ireland from 1981 to 2000 the incidence was
1.47 per 100 live births (Gregg et al, 2008).
Cleft means ‘split’ or ‘separation’. During early
pregnancy separate areas of the face develop
individually and then join together. If some
parts do not join properly the result is a cleft,
the type and severity of which can vary. A cleft
lip is a condition that creates an opening in the
upper lip between the mouth and nose. A cleft
palate occurs when the roof of the mouth has
not joined completely and can range from just
an opening at the back of the soft palate to a
nearly complete separation of the roof of the
mouth (Watson, 2001).
The cause of the failure of the face to fuse,
resulting in a cleft of the lip and or palate,
is not known. It may occur as ‘uniquely’
within a family or it may be the result of a
number of genetic and environmental factors
that occur together in a way that could not
have been predicted, or prevented in advance
(CLAPA, 2009). A cleft lip and, on occasions
a cleft palate, may be visualised antenatally by
ultrasound scan and if identified early allows
an opportunity to inform parents prior to
birth. However a facial cleft may also remain
undiagnosed until birth, when the full extent
of the anomaly becomes apparent at delivery
(Beaumont, 2006). New birth examination
following delivery, by the neonatal doctor
would include this check as part of the new
birth examination. If not picked up, late
diagnosed palate babies may present as failing
to thrive or be slow feeders and may have been
unable to breast feed (Jones, 2009).
A cleft lip and palate can affect a child’s
ability to feed, chew, breathe and hear and
can cause disturbances to dental facial, speech
and language development (Clinical Standards
Advisory Group, 1998). In the United Kingdom
(UK) to address the functional and appearance
related consequences of having a cleft, a long
term programme of surgery, orthodontic
treatment and speech therapy is offered by
multidisciplinary teams of specialist clinicians
(Nelson et al, 2011).
Most parents experience feelings of guilt,
anxiety, fear, and sadness as reactions to
having a baby with a cleft lip and or palate
(Rey-Bellet & Hohlfield, 2004). Parents appear
to go through similar reactions and emotions
whether they found out about their child’s
cleft antenatally or at the time of the delivery
(Nusbaum et al, 2008). A small number of in
depth qualitative studies have also highlighted
parents’ feelings of anxiety about surgery and
their perceived need for emotional support
through treatment (Nelson et al 2011).
UK cleft services
Across the UK many regions already have a
cleft lip and palate clinical nurse specialist.
This speciality service was not widely available
in Northern Ireland. However, since 1995
a cleft liaison team was developed in one
locality in the province comprising health
visitors and midwives from an acute hospital
and community. The cleft liaison team also
includes a consultant orthodontist.
Two midwives and two health visitors who
had a particular interest, skills and experience
in the care of children born with a cleft,
nominated themselves to develop the specialist
service. Further professional development
was completed at that time and updates
continue regularly to maintain and develop
their knowledge and skills. This cleft work is
done in addition to their exisisting roles and
A member of this team provides information
and counselling in the early stages following
diagnosis of cleft whether antenatally or post
delivery. The team help establish the feeding
of these babies and help the parents and
extended family involved in care to develop
the special skills and techniques required. The
aim of the service is to allow mother and baby
to stay together, facilitate earlier discharge
post partum and reduce the requirement for
readmission of the baby due to dehydration or
failure to thrive. Before the introduction of the
service cleft babies were frequently readmitted
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PROFESSIONAL AND RESEARCH: PEER REVIEWED
with conditions that could have been prevented
such as failure to gain weight resulting in a need
to introduce enteral feeding. Minor surgery
was often compromised by infections such as
oral thrush. The fact the there have been no
readmissions of these cleft babies to hospital
since the introduction of this service, suggests
that the consistent, accurate information and
support provided by the service is having a
While anecdotal evidence had indicated that
the service was of great help to parents it
had never been formally evaluated. It was
not known whether the service was effective
and efficient, and also from the families’
perspective, what support was provided and
The aim of this service evaluation was to clarify
the information and support most valued by
parents in receipt of care from the cleft liaison
nurse service and to identify areas where the
service could be improved.
Prior to the study starting, permission to
proceed with this service evaluation was
given by the relevant Research Governance
committee to ensure compliance with local
policy and NHS guidance (HQIP, 2011).
The service evaluation was designed to explore
the needs and views of parents who have a
baby or child with a cleft of the lip and or
palate, within the service locality. A qualitative
approach was adopted, using semi-structured
interviews, as it was thought that this method
would illuminate the health and social care
issues that are important to parents themselves,
rather than focusing professionally-led
interventions and outcome measures from a
Letters were sent out to 35 families, who
have had a child diagnosed with cleft lip/
palate from 2000 to 2008, by a member of the
cleft liaison team explaining the study and
inviting them to participate. The invitation
explained that the study was taking place to
investigate how well the current service was
working by listening to their views, attitudes
and feelings, of learning to cope with a baby/
child with a cleft lip and palate, and the
impact that the liaison team had on helping
them. Previously unmet needs were also
sought. The participants were assured that any
information provided would be completely
confidential and the data anonymised. For
those who self selected to participate, a date
and time suitable to the participant was then
arranged. the interviews were conducted on
an individual basis, in participants’ homes
or at the clinic by an impartial researchers,
using an interview schedule (Box 1) designed
by a steering committee (comprising key
stake holders eg, a consultant orthodontist,
speech and language therapist, and parent
representation). The interviews were recorded
with the participant’s permission and lasted no
longer than an hour. The recording ensured
that the whole interview was captured and
provided complete data for analysis. Following
transcription of the interviews verbatim, a
thematic analysis was conducted by the same
researcher who had carried out the interviews
(Braun & Clarke, 2006). Twenty interviews
were carried out with 16 mothers, one father,
and one grandmother, who were the main
carer for the child. The ages of the children
at the time of interview ranged from 12
months to eight years of age. Only two of the
interviewees had been given a diagnosis of
cleft in the antenatal period.
Findings and discussion
The following themes were identified:
Emotional experiences of having a child with a
cleft; the information needs of parents; service
related experiences of parents with a child with
1. Was the Cleft diagnosed during your pregnancy?
l At what stage of your pregnancy was the cleft diagnosed?
l What were your thoughts at this time?
l Who did you discuss these thoughts with?
2. Do you recall meeting a member of the Cleft Team?
l How soon after the cleft was diagnosed did you speak to someone from the Cleft Team?
l If you can remember can you tell me about the information received?
l Was the information useful?
l In what way?
3. While in hospital do you remember how many visits from the specialised cleft nurse/
consultant did you receive?
l Was the information received informative?
l Was the nurse/consultant supportive?
l In what way?
4. What type of Cleft did your baby have?
l Was the practical advice sufficient re feeding system selected?
l On leaving hospital would you say you were confident in feeding your baby?
5. On leaving hospital:
(a) Were you aware of support services and where to get support?
(b) Were you given a follow up appointment for the consultant orthodontist?
(c) Did you meet a member of the Community Cleft Team?
6. When was your first visit at home by a member of the Cleft Team?
7. In what ways did the Community Cleft Nurse provide support and information?
8. Was advice given re support group? (Cleft Lip and Palate Association (CLAPA))
9. What advice did you get from your surgeon in Belfast, in preparation for surgery?
10. What practical advice prior to surgery did you receive and from whom?
11. Did you think the Cleft Nurse was important in helping you deal with your baby’s cleft
lip or palate?
12. What kind of support did you appreciate most/least?
13. Were there other ways you could have been supported by the Cleft Team?
14. Did you source information from anywhere else? Was it useful?
Box 1- Interview Schedule
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PROFESSIONAL AND RESEARCH: PEER REVIEWED
Emotional experiences of having a child
with a cleft
The birth of an infant with a facial cleft can
be an emotionally traumatic time initiating
feelings and reactions in the parents in response
to the facial appearance (Beaumont, 2006).
Regardless of the timing of the diagnosis,
parents mostly used ‘shock’ as a response to
describe their initial reaction to news of the
cleft: ‘I was in just complete shock’ (Interview 6,
diagnosed at 23 weeks antenatally); ‘Complete
and utter shock. I found it very hard to take
in and very hard to cope with’ (Interview 10,
diagnosed at birth).
On initial diagnosis, some looked for a cause
for their child’s cleft:
‘Yeah, well my first thought was that I had done
something wrong maybe during the pregnancy.
Why did she have this because it’s not in either
family at all anywhere?’ (Interview 2, diagnosed
‘I was almost resentful that I would eat healthy
and I don’t smoke and I don’t drink and why was
this happening to me?’ (Interview 6, diagnosed
at 23 weeks antenatally).
This is echoed by Nusbaum et al (2008)
who highlighted that participants searched
for possible explanations as to the cause of the
cleft and often ended up blaming themselves.
Rey–Bell and Honlfeld (2004) evaluated the
specialised counselling received by parents after
the prenatal diagnosis of an oral facial cleft and
documented common parental reactions at the
time of diagnosis included guilt, anxiety, fear
Need for reassurance
Participants reported a need for psychological
support and reassurance.
‘They just reassured you, they made you feel that
although he had a need at the time, he was still
normal and everything was still healthy and that
it was just a short term problem’ (Interview 5,
diagnosed at birth). ‘I remember at the time
that I had my son you think ‘I’m the only one
that has a child like this’. They were reassuring.
Very reassuring’ (Interview 18, diagnosed at 24
In the absence of a psychologist, the cleft
liaison team role has a strong counselling
element, since parents go through an
adjustment process following diagnosis not
unlike that of bereavement for the loss of an
anticipated ‘perfect child’ (Martin & Bannister,
2004). The findings indicate that the cleft
service provided, in and out of hospital,
comfort and support helps alleviate fears.
Parents’ information needs
The cleft liaison team assist in the transition
between hospital and home by visiting the
postnatal ward prior to discharge, continuing
the important requirement of consistent and
accurate information, to reduce parental
anxiety as much as possible. With time,
parents’ initial feelings usually become less
acute, as the parents become accustomed to
the diagnosis and begin caring for their child
(Beaumont, 2006). The results of this study
are consistent with those reported by Maris
(2000) suggesting that despite initial negative
reactions parents are able to reorganise their
thoughts and feelings and develop acceptance
of their infant with a facial cleft, because of
the support provided by the Cleft Service.
‘Went through everything in such detail that I
felt so comforted by it. I knew then that it wasn’t
something so major or whatever’ (Interview 6,
diagnosed at 23 weeks antenatal).
The team provide leaflets and paper
‘That picture booklet of other people that had
cleft babies, what they looked like, just even
after the operation, looking at their wee arms in
splints - after that, nothing was a shock to me.
It was absolutely brilliant. I was so prepared for
what was ahead of me’ (Interview 6, diagnosed
at 23 weeks antenatal).
It could be argued that the written material
acts as an aide memoir. However, it appears
from the study results that practical, hands-on
advice, is more useful than the written
Cleft babies are slow to feed, and can be very
‘colicky’. The team gave the parents support
with feeding and winding techniques, and
assist with the management of Haberman
feeders which are specially designed for babies
with impaired sucking. ‘I think I was scared in
case I would have choked her, you know. But they
had told me “no you won’t choke her.” They told
me about the slow, medium.. different types of
flow. It was very good’ (Interview 8, diagnosed
at birth). ‘They would have went through with
me how to hold the teat and how to clean it out
and you know the fact that sometimes you might
get a choking, the baby might choke and what
to do and you know, just all of that was great’
(Interview 5, diagnosed at birth). The results
of this study are similar to an investigation by
Young (2001) that examined what information
parents feel they need and desire when being
informed after delivery that their newborn
has a cleft. The results showed that parents
wanted information about feeding methods
and home management. This is reiterated in
another study that concluded one of the major
issues for parents seemed to be problems with
feeding (Johansson & Ringsberg, 2004).
Practical advice regarding surgery
Surgery usually starts with lip repair at three months.
Allowing three months before the first surgery gives
the mother time to recover after childbirth, get to
know her baby and adjust to the appearance of the
cleft (Coy et al, 2002).The surgery takes place at the
regional centre, which is located about 75 miles
from the locality of this study. Whilst the surgeon
explains what the surgery will entail, what he was
going to do, how long it will take and that it may
be necessary to have more than one operation,
the practical advice given by the team pertaining
to living away from home, in the hospital was also
reported as very valuable support.
‘And she was able to tell me what was going to be
there and that there was microwaves there, that there
was a kitchen that you could use, shower room and
things like that, that I would never even have known.
So I was so prepared on even what to take with
me because when you’re so far away from home’
(Interview 6, diagnosed at 23 weeks antenatal).
‘What to take with me for him like button down
things so as you’re not pulling (the clothes) over
his head. She said look they may put splints on his
arms to stop him rubbing his face. She went through
everything’ (Interview 4, diagnosed at birth).
The findings of Johansson & Ringsburg (2004)
indicated that parents expressed anxiety about
the anaesthetic, the risk of infections and the
expectations of the surgery. As the regional
tertiary centre is over 75 miles away and at times,
not easily accessible to parents, these topics have
also been addressed by the local support that the
cleft liaison team provide pre and post surgery.
Cleft Service related experiences
The cleft liaison service was able to provide
information to the parents about future care and
treatment. The parents of babies with cleft lip
and or palate must cope with many problems
and health related issues and they are in need
of specialist professional support. ‘Visits are, not
rushed unlike hospital appointments – time to listen
and chat over a cup of tea’ (Interview 7, diagnosed
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PROFESSIONAL AND RESEARCH: PEER REVIEWED
l A cleft lip and palate can affect a child’s facial appearance as well as the ability to
feed, chew, breathe and hear and can cause disturbances to dental facial, speech and
l Most parents experience feelings of guilt, anxiety, fear, and sadness as reactions to
having a baby with a cleft lip and or palate
l This study was designed to explore the needs and views of parents who have a baby or
child with a cleft of the lip and or palate
l The parents of babies with cleft lip and or palate must cope with many problems and
health related issues and they are in need of specialist professional support.
at birth). ‘Great support; one to one - invaluable’
(Interview 18, diagnosed at 24 weeks antenatal).
As oral facial clefts are immediately apparent
at birth Byrnes et al (2003) suggest that access
to professionals who are trained to provide
parents with difficult information about their
children’s health as well as professionals with
expertise in management of clefts should be
immediately available. The standard endorsed
by the Clinical Standards Audit Group (1999)
also recommends that a member of the cleft
team should visit all parents with a baby
born with a facial cleft within 12 hours of
birth. The service provided in this locality is
flexible, and not just on a Monday to Friday
basis. The team build a strong supportive
relationship and provide a continuity of
care.‘Building self-esteem as well as seeing to the
baby’ (Interview 14, diagnosed at birth).
This finding is in contrast to the Byrnes
et al (2003) study which found parents of
children with a cleft diagnosis are dissatisfied
with aspects of cleft care and want informed
health professionals to show increased caring
and confidence. The cleft service evaluation
demonstrates that communication of realistic,
relevant and appropriate information to parents
is possible and is a basic but fundamental
requirement in an often traumatic and
emotional period. The quality of the service and
the dedication of the staff were most eloquently
described by a mother diagnosed in the antenatal
period. ‘The cleft team that I got to know have my
appreciation for life, without them I would have
been lost, I feel lucky to have had so much support,
everyone was fantastic and still is’ (Interview 6,
diagnosed at 23 weeks antenatal).
Implications for practice
The use of patient interviews has provided insight
into individual parents’ experiences that numbers
from quantitative data alone could not have
produced. It is important to evaluate services, to
provide evidence to justify their existence, identify
priorities for service development and learn about
the patient/client experience.
This study demonstrates what the service users need
to know, when they need to know it and how that
information is best conveyed. The support given
by the liaison service, to the parents and babies
has been valued by the users. This work is carried
out in addition to the teams’ usual responsibilities.
Recognition of the time spent over and above the
normal duties of the cleft team has been recognised
by service managers, especially if the midwife or
health visitor is working beyond contracted hours.
Release from busy wards and community settings
to carry out other specialist duties will always be
difficult, but has been facilitated as far as possible
with the support of colleagues. The study provides
additional supportive evidence for a business case
that there needs to be provision to sustain and
maintain the service on a more permanent basis.
The possibility of having the role incorporated
into job plans could be a solution, not only for the
sustainability of the service, but also in the future
commissioning of services.
Other acute care nurses, midwives and community
clinical colleagues need to be kept updated and
abreast of changes, to allow for times when members
of the team are not available. Delayed parental
contact at what is often a critical and traumatic
time for distressed parents is unacceptable within
the clinical governance framework. Professionals
with expertise in management of clefts need to be
immediately available to speak to parents and carers
at this time. Continuing professional development,
to keep the team up to date with latest advances and
knowledge in the care of cleft lip and palate, will
ensure that the team continue to provide accurate
and up to date information.
Many parents felt they could not have coped
with their child with a cleft without the benefit
of this specialist service. This study provides
the evidence to support the need for securing
recurring funding and expanding this to other
areas. In addition colleagues with a more general
role need updating in this aspect of care.
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