Khe Hở Môi Và Vòm Miệng: Chẩn Đoán Và Quản Lý Điều Trị (Cleft Lip and Palate)

859
41 Cleft Palate Treatment in Developing Countries of Africa
The concept of using a fl ap of vomer mucope-
riosteum for palatal closure (Lannelongue 1872 ;
Pichler 1934 ) is thought to minimize the poten-
tial detrimental denudation of palatal bone and
yields enough tissue for a tension-free closure.
Use of vomer fl ap (single layer) (Abyholm
et al. 1981 ) and extension of primary repair of
hard palate and lip yielded the best outcome in
the Eurocleft study.
41.3
Optimal Outcome Measures
in Cleft Palate Surgery
The birth of a child with OFC into any family is
associated with huge emotional and psychologi-
cal distress to the entire family. The quality of life
in families having children with cleft defects can
be severely reduced (Kramer et al. 2007 ) .
The multifaceted nature of the challenges
attending OFC allows for a wide perspective in
outcome measures.
Early measures like assessment, commence-
ment of counselling and treatment of these
patients and their families facilitate the overall
outcome of the patients from cosmetic, speech
and psychological perspectives (Rajasuo et al.
2004 ; Okabe et al. 2004 ; Adeyemo et al. 2009 ) .
Likewise, the presence of adequate nutritional
counselling is known to reduce the risk of malnu-
trition (especially in children with cleft palate),
thereby fostering proper development (Rajasuo
et al. 2004 ) . This paves the way for receiving
optimal surgical care with minimal risk.
Where these measures are absent, the contrary
is also true with attendant depression, social avoid-
ance and feeling of guilt, which may persist into the
adolescent years of the child and adversely affect
emotional development (Okabe et al. 2004 ) .
Evaluation of treatment outcome remains an
integral part of cleft management, and a basis for
evidence-based care delivery. Treatment guide-
lines regarding the best practice are essential
requirements in contemporary clinical practice
(Mossey et al. 2003 ) . Estimating the success of
cleft management and quality improvement is
hinged on measuring surgical outcomes at clinical
audit (Asher-Mcdade et al. 1992 ) . Diversity in
surgical techniques, skill, protocol and timing as
well as resultant variation in quality of repairs inform
the essentials of auditing (Mossey et al. 2003 ) .
Many potential outcomes for comparing CLP
treatment have been reported, and these include
dentofacial growth and development, facial
appearance, mobility of the soft palate, intelligi-
ble speech, articulation and nasal air escape,
hearing, nasal breathing, adequate eustachian
tube function, improved quality of life and patient
satisfaction (Diah et al. 2007 ; Nollet et al. 2007 ) .
However, there is no agreement among the vari-
ous specialists in cleft care regarding which of
these outcome measures is most important (Al
Omar et al. 2005 ) . Berkowitz et al. ( 2005 ) and
Berkowitz ( 2006 ) strongly condemn the use of a
priority of treatment goals and strongly advocate
“differential diagnosis” which includes a cepha-
lometric skeletal analysis of the nasopharyngeal
space as well as a nasopharyngoscopic exam of
its muscular function. More diagnostic discrimi-
nation of the patients prior to selecting the treat-
ment plan will improve the number of patients
treated successfully. Obviously and rather unfor-
tunately, facilities for these assessments are not
within the reach of most developing countries.
41.4
Current Treatment Protocols
in African Practices
A proper prelude to presenting current treatment
protocols in African countries is a highlight of
the peculiarities of cleft care in African countries
in particular and developing countries in general.
These include:
Inadequate antenatal care
•
Prenatal diagnosis is not operational
•
Poor health-seeking behaviour and very high
•
drop-out rate from the hospital
Unhelpful cultural beliefs about cleft defects, e.g.
•
as a consequence of parent’s ill doings or the child
possessed with evil spirit (Oginni et al. 2010 )
The rejection of the cleft child and sometimes
•
the family (Oginni et al. 2010 )
Late presentation for care in children and
•
adults (Figs. 41.2 , 41.3 , and 41.4 ) (Agrawal
and Panda 2011 )

860
F.O. Oginni and W.L. Adeyemo
Underweight babies (Agrawal and Panda
•
2011 )
Financial constraints as most patients are from
•
the low-income group
Very minimal or non-existing government
•
support
Limited manpower and facilities for compre-
•
hensive cleft care especially orthognathic sur-
gery, orthodontics, speech pathology and
otorhinolaryngology
A review of the current practice in African
cleft teams was conducted with the aid of a struc-
tured questionnaire. Twenty-four centres from
seven countries (Nigeria, Ghana, Uganda, Kenya,
Ethiopia, South Africa and Egypt) responded to
the survey, inputting all the required details.
Findings of this survey suggest that lip repair is
undertaken routinely between the 10th and 16th
weeks of life (mean 13.7 ± 4.7 weeks). Palate
repair was done between 3rd and 18th month
(mean 12.8 ± 4.7 months).
Most centres would routinely do CLP surger-
ies in at least two stages and never apply a single-
stage technique (Fig. 41.1 ). Six centres would
apply a single-stage procedure only occasionally
and not as a routine. They applied it in patients
aged 18 months and above, those considered able
to withstand the procedure and where lip repair
would be accompanied with anterior palate repair
using vomer fl ap.
Four other centres claim that they carry out
single-stage lip and palate repair routinely. Two
of these centres carry out their procedure in chil-
dren aged 10–18 months and above. Striking
fi ndings in this survey however were two other
centres that would do complete lip and palate
repairs in one sitting at 3 months (Hodges 2010 )
and 6 months of age. Their usual techniques of
palatoplasties were reported as Von Lagenbeck
and Sommerland, respectively (Table 41.1 ).
0
2
4
6
8
10
12
14
Never
Occasionally
Routinely
In the past
No of centers
Fig. 41.1 A graphical
illustration of the frequency
of applying single-stage cleft
lip and palate repair
Table 41.1 Usual techniques of palate repair in African
centres
Technique of palatoplasty
No. of centres (%)
Von Lagenbeck
14 (58.3)
Bardach
2(8.3)
Sommerland
2 (8.3)
V-Y push back
2 (8.3)
Von Lagenbeck–Furlow
2 (8.3)
Delaire–Lagenbeck
1 (4.2)
Intravelar veloplasty–vom-
erine fl ap
1 (4.2)
Total
24 ( 99.9 )

861
41 Cleft Palate Treatment in Developing Countries of Africa
All centres however lack a long-term follow-
up result to show their outcome.
Routine single-stage cleft lip and palate repair
in the four centres identi fi ed was predicated on:
Avoidance of second surgery, thereby saving
•
time and money
Eliminating the high likelihood of a patient
•
defaulting after fi rst stage
Satisfying parents’ desire for a “once for all
•
procedure and fear of repeated operations”
One of the centres does this to keep the babies
alive and to forestall anticipated malnutrition
being speculated to have claimed the lives of
many children (Wilson and Hodges 2012 ) .
Interestingly, one centre abandoned a single-
stage lip and palate repair because of the exces-
sive haemorrhage and severe post-operative
morbidity encountered.
Surgeons that have never explored single-
stage palatoplasty unanimously avoided it
because they believe that early single-stage repair
does tamper with facial growth.
Wide defects closed in a single stage predisposes
to very extensive surgery, closure under tension and
likelihood of wound breakdown (Fig. 41.2 ).
Additionally, they judge that the chances of
post-operative respiratory embarrassment are
higher.
The results of this survey paint a picture of the
presence of extremes of scenarios and no long-
term follow-up report. We opine that the current
regular support from charity organizations and
philanthropists may help to reduce drop-out rate
and improve outcome of follow-up studies. These
Fig. 41.2 Wide palatal defect that will defy a successful
single-stage repair
Fig. 41.3 Unilateral cleft lip and palate in a 20-year-old
Nigerian male
Fig. 41.4 Isolated cleft palate in a 13-year-old female

862
F.O. Oginni and W.L. Adeyemo
fi ndings substantiate the variability and diversity
in our practices and the very urgent need for a
standardized protocol.
Our situation calls for attaining a balance with
doing as much as possible to solve existing prob-
lems, yet getting optimal short- and long-term
results.
41.5
Striking the Delicate Balance
Between Aesthetics, Speech
and Growth
The universal goal of CLP surgeries has been
clearly spelt out (American Cleft Palate-
Craniofacial Association 1993 ) . They include
a
b
Fig. 41.5 ( a , b ) Pre- and
post-operative pictures of
cleft palate repaired in one
stage in a 25-year-old
female Nigerian

863
41 Cleft Palate Treatment in Developing Countries of Africa
obtaining optimal aesthetic, speech, growth
and hearing functions. The ideal timing and
technique for palatoplasty remain an enigma.
Proponents of early palatoplasty want it for
better speech (Dorf and Curtin 1987 ) , while
the advocates of delayed palatoplasty (espe-
cially hard palate repair) want it for better
maxillofacial growth (Gillies and Kesley Fry
1921 ; Hotz and Gnoinski 1979 ) .
A fair appraisal of the existing protocols reveals
desires to achieve the universal goals in all patients
by all surgeons despite prevailing circumstances.
Doubtless, this end may have to be reached by var-
ious means; nevertheless, there is a need to strive
for safety and excellence in outcomes. Striking
a delicate balance entails meeting the immediate
demands, but more importantly, the long-term
consequence(s) of interventions must be given very
serious considerations. Measurement of treatment
outcome should be an integral part of cleft man-
agement, especially now when evidence-based
medical care and treatment guidelines regarding
the best practice are essential requirements in con-
temporary clinical practice (Mossey et al. 2003 ) .
In the absence of long-term outcomes of cur-
rent practices in most developing countries of
Africa, our practices can be scrutinized in the
light of evidences available in the literatures.
The concept of missing palate due to malnutri-
tion is a speculation; as such, there is a possibility
that the palates may have been lost to parent’s per-
ception, fear of surgery, etc. We advocate meticu-
lous search for the missing palates and an authentic
report of their whereabout. Agrawal and Panda
( 2011 ) reported palates resurfacing just before
marriage or special occasions in the family.
If indeed these patients are being lost to malnutri-
tion, an agenda that beefs up nutritional care should
serve as an appropriate stopgap protocol until the
child reaches maturity with improved health.
Furthermore, evidences from available literatures
suggest that a single-stage repair at 3 months to keep
the child alive through good nutrition may turn out
to be “solving part of the problem and creating a
new one”. While achieving our goals of early single-
stage repair (including Von Lagenbeck palatoplasty)
in these patients, available literatures suggest that we
may also end up with good speech outcome, mini-
mal scar, little or no experience of stigmatization
initially and a markedly retruded middle face and a
late onset stigmatization (Ross 1987a, b, c, d, e ) .
41.6
A Proposed Protocol
Having established that there are many protocols,
the clinics still need treatment protocol(s) that
address their speci fi c peculiar factors and yet
guided by test of professional ethics. Additionally,
this would go a long way in helping to bridge the
gap in our practices.
In formulating a protocol for the developing
countries, it is important for us to start off with the
realization that the ideals are extremely desirable
for the developing countries as for the developed:
What is proven good and proper for the developed
•
world is indeed appropriate for the developing
countries. The main goals are the psychosocial
factors, facial growth, speech and dental
alignment.
The peculiarities of the developing countries
•
as stated earlier need to be incorporated into
such protocols to make them acceptable to the
parents and adult patients.
Each case should be handled on its individual
•
merit (Berkowitz et al. 2005 ) since no two
patients are the same. Protocols should not be
rigid, but mere guides to individualizing them.
Zero tolerance to compromise in safety and
•
striving for long-term excellent outcome
should be the goal.
Giving due recognition to very simple mea-
•
sures like counselling and the involvement of
social health services (to improve motivation,
enlightenment by additional education and
accessibility) will help patients get their ques-
tions answered at any time, regardless of their
remote locations. A telephone help line is a
simple measure that may facilitate this.
As we evolve out of a huge backlog of adult
•
patients, a passionate motivation at lip repair
would go a long way to ensure patient’s return
for palate surgery in due time.
An excellent primary surgery outcome would
•
go a long way to get patients back. This will be
enhanced by the support (prepaid care) received
in most developing countries from interna-
tional non-governmental organizations.

864
F.O. Oginni and W.L. Adeyemo
Surgical techniques that entail stripping of
•
palatal mucosa in children are not desirable.
Granted that “what you do to start with
•
depends on what was handed over to you espe-
cially in training”, there is the need to retrain
the old, learn new techniques and shift ground
as occasion demands.
The protocol proposed must be considerate of
•
the patient’s safety. The attendant co-morbid-
ity must not outweigh the bene fi ts.
The big question always should be, “Considering
•
the type of defect, anticipated duration of sur-
gery, patient’s age, general health condition,
available facilities, etc., how best can this pro-
cedure be planned and carried out?”
Over and above these factors, the training
•
undergone by the cleft surgeon in fl uences to a
large extent the choice of the primary surgical
schedule (Lee and Kim 2003 ) . Nonetheless,
there is always a lot of room for modi fi cation
based on learning new skills and concepts
from well-respected colleagues.
The majority of the centres worldwide prefer
to repair the cleft lip at 3–6 months of age and
cleft palate at 6–18 months of age (Lee and Kim
2003 ) Table 41.2 . Even within the same centre,
different surgeons sometimes follow different
time schedules and techniques (Shaw et al. 1992 ) .
A situation where there are as many primary sur-
gery protocols as there are cleft centres appears
to be the rule rather than the exception.
The different time schedules in different cen-
tres are selected with speci fi c objectives, which
are mainly related to maxillofacial growth and/or
speech development.
Most of the existing and published protocols
are developed from and for the developed coun-
tries where many have a priority system favour-
ing speech.
Although they strive for good dento-maxillofacial
growth and psychosocial well-being, they are
not always 100% successful at attaining this
(Berkowitz 2006 ) .
Reiterating and re-emphasizing the develop-
ing country’s situation, there are many more fac-
tors to be considered in the surgical correction of
congenital anomalies like CLP. Factors like lack
of awareness, lack of funds, presence of domes-
tic problems, “advised late surgery”, child’s ill-
ness, lack of operative facilities in nearby
Table 41.2 Primary surgical treatment protocols in different cleft centres in major studies in the literature
Year
Author
Country
Age at lip repair
(months)
Age at palate repair
(months)
1978
Schweckendiek and Doz
Germany
–
sP 6–8, hP 12–14
1982
Takkar and Gupta
India
3–6
18–24
1983
Malek and Psuame
France
6
sP–3, hP 6 with lip repair
1990
Freedlander et al.
Britain
Neonatal
–
1992
Shaw et al.
USA
Centre A
3–4
sP 9–15, hP 9 years
Centre B
Lip + Ant hP–2
post-hP + sP 22
Centre C
>6
12
Centre D
>6
<24
Centre E
Lip + Ant hP–3
post-hP 18–22
Centre F
4–6
12
2003
Lee and Kim
Korea
2.5–3 months or <6
6–12 or 12–18
2005
Weinfeld et al.
USA
3 or 3–6
–
2005
Berkowitz et al.
USA
–
18–24
2006
Flinn et al.
USA
Centre A
3
Centre B
6
sP–6, hP–18
Centre C
3
18
2006
Noordhoff and Chen
Taiwan
3–5
11–12
2011
Agrawal and Panda
India
9–12
6–9

865
41 Cleft Palate Treatment in Developing Countries of Africa
hospitals and associated anomalies are some of
the causes of late arrival (Agrawal 2007 ; Schwarz
and Khadka 2004 ) . Similarly, patients in Uganda
did not return for cleft palate repair because they
did not seem to appreciate the importance of the
palate in speech production (Hodges and Hodges
2000 ) .
Against the backdrop of the special consider-
ations in developing countries, an ideal protocol
must be one that suits patients’ conditions with-
out compromising overall long-term functional
results in terms of speech and dento-maxillofa-
cial growth. Simultaneously, it should improve
the compliance for second surgery and not nec-
essarily eliminate it. It should not be too taxing
for children with relatively low body weight,
borderline haemoglobin concentration and other
related health challenges. It should not increase
the number of surgical procedures and create
burden for parents of low socioeconomic status.
Agrawal and Panda ( 2011 ) in line with these
objectives proposed palatoplasty at 6 months or
at presentation (if 6 months or beyond). Lip
repair follows preferably 3–6 months after the
fi rst surgery. This is similar to Malek’s protocol
in which only soft palate is repaired at 2 months
in a fi rst surgery. Thereafter, the lip and hard pal-
ate are repaired at 6 months. The authors con-
cluded that early closure of soft palate ensures
normal language development and less middle
ear complications (Malek and Psaume 1983 ) .
Although this procedure has its advantages, it
has many drawbacks as well involving the failure
to have good, facial aesthetics and dental
occlusion.
This chapter proposes a two-part protocol with
variable staging for cleft lip and palate repairs.
Part one of the protocol looks into severity of
patient’s defect, patient’s general health condi-
tion, patient or parent’s level of motivation and
access to intensive care unit. From these param-
eters, a list of absolute contraindications and rela-
tive indications are generated.
The second part re fl ects on defect type and
patient’s age at presentation. An interval of at least
3–6 months is proposed between stages of surgery.
This proposal allows options of delayed or
early lip repair. It is envisaged that the fi nal choice
will depend on parents or patient’s position and
attending surgeon’s de fi nitive decision. While it is
often believed that parents would always want lips
repaired fi rst as it addresses the bulk of stigma
experienced, Agrawal and Panda ( 2011 ) were able
to prove that this is not always true. They proposed
a protocol with the cleft lip and anterior palate
(with primary nasal correction) as a second sur-
gery, and parents were well disposed to it.
Only 1.3 % parents requested for lip repair at
6 months of age and palate repair at 1 year. Using
the drop-out rate as an index of success, there
was a 32.58 % in the conventional protocol group
(lip surgery fi rst) and 14.24 % in the modi fi ed
schedule group (palate fi rst).
Working with these patients and parents for
decades, Agrawal and Panda ( 2011 ) established
that the majority of parents in developing coun-
tries are easy to counsel. Though they are con-
cerned about the baby’s appearance, they readily
resign the decision on protocol to the treating/
managing surgeon. Years of practise have proven
that the drive for the second surgery is minimal if
cleft lip is repaired fi rst because the cleft palate is
hidden inside the mouth. Consequently, the high
drop-out rate was reported.
On the other hand, when soft palate repair is
the fi rst surgery, the drive for lip repair is main-
tained, and the compliance much better with a
lower to nil drop-out rate.
41.6.1 Proposed Protocol
Part 1 Fundamental components
A
B
C
D
Extent
of defect
Motivation Access to ICU
General
health
status
A 1 Severe
B 0 Poor
C 0 Nil
D0 Poor
A 2 Moderate B 1 Good
C 1 Inadequate
D 1 Fair
A 3 Minimal
B 2 Very
good
C 2 Adequate
D 2 Good
D 3 Very
good
Absolute contraindications
to one-stage CLP repair
Relative indications for
one-stage CLP repair
A 1
A 2 & A 3
B 0
B 1 & B 2
C 0 & C 1
C 2
D 0 & D 1
D 2 & D 3

866
F.O. Oginni and W.L. Adeyemo
Advantages of proposed surgical schedule for
cleft lip and palate patients:
This proposal takes key factors that affect cleft
•
palate care in the developing economy into
consideration.
Appropriate counselling and delayed lip repair
•
are a possible cure for the “missing palate”.
Cleft palate is repaired at the most accepted
•
time schedule for palatoplasty (6–9 months)
for good speech result in patients presenting
early.
Tries to eliminate the complication of midfa-
•
cial growth disturbance, a problem that most
developing countries are not fully equipped to
address.
It advises on favourable surgical technique.
•
Speech was accorded appropriate priority in
•
children presenting late.
Although a fl exible proposal, the presence of
•
unrepaired cleft lip facilitates mouth opening
and visibility of the palate, thus allowing a
technically easier cleft palate repair.
Initial closure of soft palate helps to narrow
•
down residual palate closure over time before
it is due for closure.
During cleft lip repair, the anterior palate
•
repair is done under good vision; hence, inci-
dence of anterior palatal fi stula will be very
low.
While performing the cleft lip repair, there is
•
an opportunity to examine the palate under
GA for any abnormality.
Cleft palate fi stula if identi fi ed can be repaired
•
along with the lip repair.
Disadvantage:
Vomer fl ap technique of palatoplasty will have
•
to be learnt by the majority as it is not very
popular in the continent from our survey.
Conclusion
While no rigid modus operandi can be formu-
lated on a keenly debated issue like this, it is
obvious that the established principles for
safety and excellent short- and long-term
Age at presentation
Initial care
Cleft lip and palate surgical protocol options
Birth to 12 months
Pre-surgical
examination,
non-surgical
interventions, other
specialty assessment
[A] Paediatrician assessment, PSO, intensive nutrition build-up, etc.
Lip repair at 3 months
sP–hP repair at 12–18 months (IVV and vomer fl ap)
[B] sP repair at 6 months (IVV)
hP and lip repair 3–6 months after (vomerine fl ap for hP)
[C] sP and unilateral hP at 6 months (IVV and vomerine fl ap for hP)
lip and 2nd half of hP 3–6 months after (vomerine fl ap for hP)
*NB: sP dissection before 10 months facilitated with operating
microscope or loupes
1–5 years (speech is a
priority)
Pre-surgical
examination,
non-surgical
interventions, other
specialty assessment
[A] sP closure ± unilateral hP at presentation (IVV and vomerine
fl ap)
Second half of hP and lip 3–6 months after
[B] sP closure at presentation
hP and lip 3–6 months after
NB (vomer fl ap preferred before 2 years and IVV for soft palate.
May use Von Lagenbeck after 2 years)
6 years to adulthood
(growth disturbance
not a serious concern)
Pre-surgical
examination,
non-surgical
interventions, other
specialty assessment
[A] CL repair at presentation
Palate repair 3–6 months after (multiple or single stage)
[B] sP closure ± unilateral hP at presentation (any desirable
technique)
Lip and second half palate 3–6 months after
Complete lip and palate repair single stage if there are no
contraindications in part 1
Part 2 Age considerations

867
41 Cleft Palate Treatment in Developing Countries of Africa
outcomes are universally acceptable and there-
fore good for the developing countries regard-
less of their attending peculiarities.
Striking a delicate balance for good appear-
ance, excellent growth and speech as well as
middle ear function is predicated on appropri-
ate staging in the appropriate patient at the
appropriate time and using the appropriate
surgical technique(s).
The proposed schedule for primary surger-
ies in many children and few adults with CLP is
aimed at improving compliance for the timely
repair of palate and lip in developing countries
where the situation warrants an innovative
viewpoint because of unique existing factors.
The palatoplasty performed fi rst at 6–9
months is a universally acceptable time for the
development of good speech and hearing, and
cleft lip repair 3–6 months later should not
affect maxillofacial growth. The compliance
for second-stage surgery improves signi fi cantly
with this schedule.
References
Abyholm FE, Borchgrevink HC, Eskeland G (1981) Cleft
lip and palate in Norway. III. Surgical treatment of
CLP patients in Oslo 1954–1975. Scand J Plast
Reconstr Surg 15:15–28
Adeyemo WL, Ogunlewe MO, Desalu I et al (2009) Cleft
deformities in adults and children aged over 6 years in
Nigeria: reasons for late presentation and management
challenges. Clin Cosmet Investig Dent 1:63–69
Agrawal K (2007) Changing trends in reporting of cleft
children for primary surgery at JIPMER. Presented at
the 6th Asian Paci fi c congress of society for cleft lip,
palate & craniofacial anomalies. Goa, Sept 2007
Agrawal K, Panda K (2011) A modi fi ed surgical schedule
for primary management of cleft lip and palate in
developing countries. Cleft Palate Craniofac J 48:1–8
Al Omar I, Millett DT, Ayoub AF (2005) Methods of
assessment of cleft related facial deformity: a review.
Cleft Palate Craniofac J 42:145–156
American Cleft Palate-Craniofacial Association (1993)
Parameters for evaluation and treatment of patients
with cleft lip/palate or other craniofacial anomalies.
Cleft Palate Craniofac J 30(suppl):S1–S16
American Cleft Palate-Craniofacial Association, Cleft
Palate Foundation (2005–2006) American cleft palate-
craniofacial association 2005–2006 membership- team
directory. ACPA/CPF National Of fi ce, Chapel Hill,
pp 1–400
Asher-Mcdade C, Brattstrom V, Dahl E et al (1992) The
RPS: a six-center international study of treatment of
clefts of the lip and palate: part 4. Assessment of naso-
labial appearance. Cleft Palate Craniofac J 29:409–412
Bardach J, Kelly KM (1990) Does interference with
mucoperiosteum and palatal bone affect craniofacial
growth? An experimental study in beagles. Plast
Reconstr Surg 86:1093–1100; discussion 1101–1102
Benedict RE, Farel AM (2003) Identifying children in
need of ancillary and enabling services: a population
approach. Soc Sci Med 57:2035–2047
Berkowitz S (1985) Timing of palatal closure should not
be based on age alone. Cleft Palate J 22:132–134
Berkowitz S, Duncan R, Evans C et al (2005) Timing of
cleft palate closure should be based on the ratio of the
area of the cleft to that of the palatal segments and not
on age alone. Plast Reconstr Surg 115:1483–1499
Berkowitz S (2006) Cleft lip and palate: diagnosis and
management, 2nd edn. Springer, Heidelberg
Betz CL, Baer MT, Poulsen M et al (2004) Secondary
analysis of primary and preventive services accessed
and perceived service barriers by children with devel-
opmental disabilities and their families. Issues Compr
Pediatr Nurs 27:83–106
Bludorp P, Egyedi P (1984) The in fl uence of age at
operation for clefts on the development of the jaw.
J Maxillofac Surg 12:193–200
Bokhout B, Hofman FX, van Limbeek J et al (1997)
Incidence of dental caries in the primary dentition in chil-
dren with a cleft lip and/or palate. Caries Res 31:8–12
Buescher PA, Horton SJ, Devaney BL et al (2003)
Differences in use of health services between White
and African American children enrolled in Medicaid
in North Carolina. Matern Child Health J 7:45–52
Cassel CH, Daniels J, Meyer RE (2009) Timeliness of pri-
mary cleft lip/palate surgery. Cleft Palate Craniofac
J 46:588–597
Cassell CH, Meyer RE, Farel AM (2007) Predictors of
referral to the North Carolina Child Service
Coordination Program among infants with orofacial
clefts. Cleft Palate Craniofac J 44:45–51
St Clair PA, Smeriglio VL, Alexander CS et al (1990)
Situational and fi nancial barriers to prenatal care in a
sample of low income, inner-city women. Public
Health Rep 105:264–267
Delaire J, Precious DS, Gordeef A (1988) The advantage
of wide subperiosteal exposure in primary correction
of labial maxillary clefts. Scand J Plast Reconstr Surg
22:147
Diah E, Lo LJ, Yun C et al (2007) Cleft oronasal fi stula: a
review of treatment results and a surgical management
algorithm proposal. Chang Gung Med J 30:529–537
Dorf DS, Curtin JW (1987) Early cleft palate repair and
speech outcome. Plast Reconstr Surg 80:518–527
Fiscella K, Franks P, Doescher MP et al (2002) Disparities
in health care by race, ethnicity, and language among
the insured: fi ndings from a national sample. Med
Care 40:52–59
Flinn W, Long RE Jr, Garattini G et al (2006) A multi-
center outcomes assessment of fi ve-year-old patients

868
F.O. Oginni and W.L. Adeyemo
with unilateral cleft lip and palate. Cleft Palate
Craniofac J 43:253–258
Freedlander E, Webster MH, Lewis RB et al (1990)
Neonatal cleft lip repair in Ayrshire; a contribution to
the debate. Br J Plast Surg 43:197–202
Freide H, Moller M, Lilja J et al (1987) Facial morphol-
ogy and occlusion at the stage of early mixed dentition
in cleft lip and palate patients treated with delayed clo-
sure of the hard palate. Scand J Plast Reconstr Surg
21:65–71
Friede H, Enemark H (2001) Long term evidence for
favorable midfacial growth after delayed hard palate
repair in UCLP patients. Cleft Palate Craniofac
J 38:323–329
Friede H, Lilja J (1994) Dentofacial morphology in ado-
lescent or early adult patients with cleft lip and palate
after a treatment regimen that included vomer fl ap sur-
gery and pushback palatal repair. Scand J Plast
Reconstr Surg Hand Surg 28:113–121
Friede H, Lilja J, Johanson B (1980) Cleft lip and palate
treatment with delayed closure of the hard palate. A pre-
liminary report. Scand J Plast Reconstr Surg 14:49–53
Friede H, Enocson L, Lilja J (1988) Features of maxillary
arch and nasal cavity in infancy and their in fl uence on
deciduous occlusion in unilateral cleft lip and palate.
Scand J Plast Reconstr Surg 22:69–75
Galineir P, Salazard B, Deberail A et al (2008) Neonatal
repair of cleft lip: a decision making protocol. J Pediatr
Surg 43:662–667
Gillies HG, Kesley Fry W (1921) A new principle in the
surgical treatment of congenital cleft palate and its
mechanical counterpart. Br Med J 1(3140):335–338
Gnoinski WM, Haubensak RR (1997) Facial patterns and
long term growth in patients with complete unilateral
cleft lip and palate. In: Lee ST (ed) Transactions of the
eighth international congress on cleft palate and related
craniofacial anomalies. Stamford Press, Singapore, pp
764–768
Gosain AK, Conley SF, Santoro TD (1999) A prospective
evaluation of the prevalence of submucous cleft palate
in patients with isolated cleft lip versus controls. Plast
Reconstr Surg 103:1857–1863
Hagemann R (1941) Uber spatfolgen des operativen gau-
menspalt enverschlusses bruns beitr. Klin Chir 79:573
Hodges AM (2010) Combined early cleft lip and palate
repair in children under 10 months a series of 106 patients.
J Plastic Reconstr Aesthetic Surg 63:1813–1819
Hodges AM, Hodges SC (2000) A rural cleft project in
Uganda. Br J Plast Surg 53:7–11
Hodgkinson PD, Brown S, Duncan D et al (2005)
Management of children with cleft lip and palate: a
review describing the application of multidisciplinary
team working in this condition based upon the experi-
ences of a regional cleft lip and palate center in the
United Kingdom. Fetal Matern Med Review 16:1–27
Hotz MM, Gnoinski WM (1976) Comprehensive care of
cleft lip and palate children in Zurich University: a
preliminary report. Am J Orthod 70:481–504
Hotz MM, Gnoinski WM (1979) Effects of early max-
illary orthopedics in coordination with delayed
surgery for cleft lip and palate. J Maxillofac Surg
7:201–210
Hotz MM, Gnoinski WM, Nussbaumer H et al (1978)
Early maxillary orthopaedics in CLP cases: guidelines
for surgery. Cleft Palate J 15:405–411
Joos U (1987) The importance of muscular reconstruction
in the treatment of cleft lip and palate. Scand J Plast
Reconstr Surg 21:109–113
Jorgenson J, Shapiri SD, Odinet K (1984) Studies on
facial growth and arch size in cleft lip and palate.
J Craniofac Genet Dev Biol 4:33–38
Kramer FJ, Baethge C, Sinikovic B et al (2007) An analy-
sis of quality of life in 130 families having small chil-
dren with cleft lip/palate using the impact on family
scale. Int J Oral Maxillofac Surg 36:1146–1152
Lannelongue R (1872) Staphlorrhaphie complimentaire.
Bull Soc Chir Paris 1:45
Lee TJ, Kim ST (2003) A survey of cleft lip and palate
management taught in training programs in Korea.
Cleft Palate Craniofac J 40:80–83
Lehner B, Wiltfang J, Strobel-Schwarthoff K et al (2003)
In fl uence of early hard palate closure in unilateral and
bilateral cleft Lip and palate on maxillary transverse
growth during the fi rst four years of age. Cleft Palate
Craniofac J 40:126–130
Lilja J, Mars M, Elander A (2006) Analysis of dental arch
relationships in Swedish unilateral cleft lip and palate
subjects: 20-year longitudinal consecutive series
treated with delayed hard palate closure. Cleft Palate
Craniofac J 43:606–611
Lohmander-Agerskov A (1998) Speech outcome after
cleft palate surgery with the Goteborg regimen includ-
ing delayed hard palate closure. Scand J Plast Reconstr
Hand Surg 32:63–80
Lohmander-Agerskov A, Soderpalm E (1993) Evaluation
of speech after completed late closure of the hard pal-
ate. Folia Phoniatr Logop 45:25–30
Lohmander-Agerskov A, Willadsen E (1999) A compari-
son of long term speech results following delayed hard
palate closure concept and a conventional two stage
vomer fl ap/pushback procedure in UCLP patients.
Presented at the sixth European craniofacial congress.
Manchester, June 1999
Lohmander-Agerskov A, Friede H, Lilja J et al (1996)
Delayed closure of the hard palate: a comparison of
speech in children with open and functionally closed
residual clefts. Scand J Plast Reconstr Surg Hand Surg
30:121–127
Lynch JI, Karnell MP (2003) Cleft lip and palate: the
school-aged child. Cleft Palate Foundation, Chapel
Hill, pp 1–34
Malcolm LJ, Richard GO (2000) Orthodontic manage-
ment of cleft lip and palate patients, W&H Orthodontic
notes. 23:208–214
Malek R, Psaume J (1983) Nouvelle conception de la
chrolologie et de la technique chirurgicale du traite-
ment des fentes labio-palatines: Resultats sur 220 cas.
Ann Chir Plast Esthet 28:237–247
Malek R, Psaume J, Moesset MR (1986) A new sequence
and a new technique in complete lip and palate repair.

869
41 Cleft Palate Treatment in Developing Countries of Africa
In: Hotz MM (ed) Early treatment of cleft lip and pal-
ate. Hans Huber, Zurich
Markus AF, Smith WP, Delaire J (1993) Primary closure
of cleft palate: a functional approach. Br J Oral
Maxillofac Surg 31:71–77
Mars M, Asher-McDade C, Brattstrom V et al (1992) The
RPS. A six-center international study of treatment out-
come in patients with clefts of the lip and palate: part
3. Dental arch relationships. Cleft Palate Craniofac J
29:405–408
McHeik JN, Levard G (2006) Neonatal cleft lip repair:
psychological impact on mothers. Arch Pediatr
13(4):346–351
Melissaratou A, Friede H (2002) Dental arches and occlu-
sion in bilateral cleft lip and palate patients after two
different routines for palatal surgery. J Orofac Orthop
63:300–314
Mølsted K, Asher-McDade C, Brattstrom V et al (1992)
The RPS. A six-center international study of treatment
outcome in patients with clefts of the lip and palate:
part 2. Craniofacial form and soft tissue pro fi le. Cleft
Palate Craniofac J 29:398–404
Mossey PA, Clark JD, Gray D (2003) Preliminary investi-
gation of a modi fi ed huddart/Bodenham scoring sys-
tem for assessment of maxillary arch constriction in
unilateral cleft lip and palate subjects. Eur J Orthod
25:251–257
Murray L, Hentges F, Hill J et al (2008) The effect of cleft
lip and palate, and the timing of lip repair on mother-
infant interactions and infant development. J Child
Psychol Psychiatry 49:115–123
Mylin WK, Hagerty RF (1983) Midfacial skeletal pro fi le
in early and late closure of the hard palate. South Med
J 76:610–612
Nackashi JA, Dedlow ER, Wood-Dixon V (2002) Health
care for children with cleft lip and palate: comprehen-
sive services and infant feeding. In: Wyszynski DF
(ed) Cleft lip and palate: from origin to treatment.
Oxford University Press, New York, pp 303–318
National Institute for Health Care Management Foundation
(2007) Reducing health disparities among children:
strategies and programs for health plans. National
Institute for Health Care Management, Washington,
DC, pp 1–28
Newacheck PW, McManus M, Fox HB et al (2000) Access
to health care for children with special health care
needs. Paediatrics 105:760–766
Nollet PJPM, Kuijpers-Jagtman AM, Chatzigianni A et al
(2007) Nasolabial appearance in unilateral cleft lip,
alveolus and palate: a comparison with Eurocleft.
Cleft Palate Craniofac J 35:278–286
Noordhoff MS, Chen PK (2006) Unilateral cheiloplasty.
In: Mathes SJ (ed) Mathes plastic surgery, vol 4, 2nd
edn, Pediatric plastic surgery. Saunders Elsevier,
Philadelphia, pp 165–215
Noverraz AEM, Kuijpers-Jagtman AM, Mars M, Van’t
Hof MA et al (1993) Timing of hard palate closure and
dental arch relationship in unilateral cleft lip and pal-
ate patients: a mixed longitudinal study. Cleft Palate
Craniofac J 30:391–396
Oginni FO, Asuku ME, Oladele OA et al (2010)
Knowledge and cultural beliefs about the aetiology
and management of facial clefts in Nigeria’s major
ethnic groups. Cleft Palate Craniofac J 47:327–334
Okabe K, Nakagawa K, Yamamoto E (2004) Factors affect-
ing the occurrence of bacteremia associated with tooth
extraction. Int J Oral Maxillofac Surg 24:239–242
Peterson-Falzone SJ (1996) The relationship between
timing of cleft palate surgery and speech outcome;
what have we learned and where do we stand in the
1990’s. Semin Orthod 2:185–191
Pichler H (1934) Operationen der angeborenen lippen-
kiefer-gaumenspalten. Wien Klin Wochenschr 47:
70–72
Porter fi eld SL, McBride TD (2007) The effect of poverty
and caregiver education on perceived need and access
to health services among children with special health
care needs. Am J Public Health 97:323–329
Rajasuo A, Nyfors S, Kanervo A et al (2004) Bacteremia
after plate removal and tooth extraction. Int J Oral
Maxillofac Surg 33:356–360
Riski JE (2002) Evaluation and management of speech,
language, and articulation disorders. In: Wyszynski
DF (ed) Cleft lip and palate. Oxford University Press,
New York, pp 354–370
Robertson NRE (1986) Two stage palatal surgery: effects of
early versus delayed hard palate repair in a 11 year fol-
low-up. In: Hotz M, Gnoinski W, Perko M, Nussbaumer
H, Hof E, Haubensak R (eds) Early treatment of cleft lip
and palate. Hans Huber, Toronto, p 149
Robertson NRE, Jolleys A (1968) The effects of early
bone grafting in complete clefts of the lip and palate.
Plast Reconstr Surg 42:414
Rohrich RJ, Byrd HS (1990) Optimum timing of cleft pal-
ate closure. Speech, facial growth and hearing consid-
erations. Clin Plast Surg 17:27–36
Rohrich RJ, Rowsell AR, Johns DF et al (1996) Timing of
hard palate closure: a critical long-term analysis. Plast
Reconstr Surg 98:236–246
Rohrich RJ, Love EJ, Byrd HS et al (2000) Optimal tim-
ing of cleft palate closure. Plast Reconstr Surg
106:413–421
Ronsaville DS, Hakim RB (2000) Well child care in the
United States: racial differences in compliance with
guidelines. Am J Public Health 90:1436–1443
Rosenbach ML, Irvin C, Coulam RF (1999) Access for
low-income children: is health insurance enough?
Pediatrics 103:1167–1174
Ross RB (1987a) Treatment variables affecting growth in
cleft lip and palate. Part 2: pre-surgical orthopaedics.
Cleft Palate J 24:25–31
Ross RB (1987b) Treatment variables affecting growth in
cleft lip and palate. Part 4: repair of the cleft lip. Cleft
Palate J 24:45–53
Ross RB (1987c) Treatment variables affecting growth in
cleft lip and palate. Part 5: timing of palate repair.
Cleft Palate J 24:54–63
Ross RB (1987d) Treatment variables affecting growth in
cleft lip and palate. Part 6: techniques of palate repair.
Cleft Palate J 24:64–70

870
F.O. Oginni and W.L. Adeyemo
Ross RB (1987e) Treatment variables affecting growth in
cleft lip and palate. Part 7: an overview of treatment
and facial growth. Cleft Palate J 24:71
Schwarz R, Khadka SB (2004) Reasons for late presenta-
tion of cleft deformity in Nepal. Cleft Palate Craniofac
J 41:199–201
Schweckendick H (1951) Zur frage der früh-oder spätop-
erationen der angeborenen lippen-kiefer-gaumenspal-
ten (mit demonstrationen). Z Laryngol Rhinol Otol
30:51–56
Schweckendick W, Doz P (1978) Primary veloplasty:
long-term results without maxillary deformity.
A twenty fi ve year report. Cleft Palate J 15:268–274
Semb G (1991) A study of facial growth in patients with
unilateral cleft lip and palate treated by the Oslo CLP
team. Cleft Palate Craniofac J 28:1–21
Shaw WC, Asher-McDade C, Brattstrom V et al (1992)
The RPS. A six center international study of treatment
outcome in patients with clefts of the lip and palate:
part 1. Principles and study design. Cleft Palate
Craniofac J 29:393–397
Shaw WC, Semb G, Nelson P et al (2001) The Eurocleft
project 1996–2000: overview. J Craniomaxillofac Surg
29:131–437
Sitversen A, Wilcox A, Johnson GE et al (2008) Prevalence
of major anatomic variations in oral clefts. Plast
Reconstr Surg 121:587–595
Sperber GH (2002) Palatogenesis: closure of the second-
ary palate. In: Wyszynski DF (ed) Cleft lip and palate:
from origin to treatment. Oxford University Press,
New York, pp 14–24
Strauss RP (1999) The organization and delivery of cran-
iofacial health services: the state of the art. Cleft Palate
Craniofac J 36:189–195
Strauss RP (2002) Developing a cleft palate or craniofa-
cial team. In: Wyszynski DF (ed) Cleft lip and palate:
from origin to treatment. Oxford University Press,
New York, pp 293–302
Takkar KL, Gupta JL (1982) Cleft lip and palate. Indian
Pediatr 19:937–942
Wada T, Mizokawa N, Miyazaki T et al (1984) Maxillary
arch growth in different types of cleft. Cleft Palate
J 21:180–192
Weinfeld AB, Hollier LH, Spira M et al (2005)
International trends in the treatment of cleft lip and
palate. Clin Plast Surg 32:19–23
White RB (1981) Services for children with congenital
facial clefts through a state Crippled Children’s Service
Program. Cleft Palate J 18:116–121
Williams AC, Sandy JR (2003) Risk factors for poor den-
tal arch relationships in young children born with uni-
lateral cleft lip and palate. Plast Reconstr Surg
111:586–593
Wilson J, Hodges A (2012) Cleft lip and palate surgery
carried out by one team in Uganda: where have all the
palates gone? Cleft Palate Craniofac J 49:299–304,
Epub 2011 May 12
Yoshida H, Nakamura A, Michi K et al (1992)
Cephalometric analysis of maxillofacial morphology
in unoperated cleft palate patients. Cleft Palate
Craniofac J 29:419–424
Ysunza A, Pamplona MC, Quiroz J et al (2010) Maxillary
growth in patients with complete cleft lip and palate,
operated on around 4–6 months of age. Int J Pediatr
Otorhinolaryngol 74:482–485

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42
42.1
Introduction
Cleft congenital malformations are a major issue
in developing countries due to the disproportion-
ately high birth rates in poorer areas of the world.
Nearly 95 % of annual births in the world, and
94 % of all children born with clefts, are born in
developing countries (Mars et al. 2008 ) . The eti-
ology of the high cleft incidence in developing
countries remains unclear. However, it is pre-
sumed to be multifactorial, due to various envi-
ronmental and genetic factors (Mangold et al.
2011 ) . Toxin exposure during the antenatal period
is more likely in developing countries due to poor
sanitation, inadequate infrastructure, and politi-
cal instability (Hseih et al. 2011 ) . For many of the
same reasons, malnutrition is also more likely to
be an issue for a pregnant woman living in the
developing world (Pelletier et al. 2011 ) . Genetic
factors are also a major potential cause of birth
defects, because consanguineous practices are
generally more prevalent in developing rather
than in developed countries (Sandridge et al.
2010 ) .
While the incidence of clefts in developing
countries is high, the resources directed toward
treating this global health issue are not increasing
(Mars et al. 2008 ) . Consequently, the prevalence
of unrepaired clefts continues to grow, making
the need for coordinated global cleft care all the
more imperative. Over the past 10 years, global
health efforts, by both the nongovernmental
organizations and the private sector, have largely
focused on the area of infectious diseases through
the development and distribution of vaccines
and antiviral therapies (Nishtar and Jan-Llopis
2011 ) . While these areas are important, a shift is
necessary toward recognizing the major burden
of noncommunicable conditions on developing
countries. With 80 % of noncommunicable dis-
eases occurring in low- and low-middle-income
countries, these countries are burdened by the
economic implications of decreased productiv-
ity and shortened life expectancies (Livestrong
2011 ) . The realities suggest that the treatment of
noncommunicable conditions, such as clefts, can
serve as part of a larger infrastructure develop-
ment program.
The general scarcity of medical resources and
skilled healthcare practitioners in developing
countries signi fi cantly affects the ability to treat
patients with clefts (Mars et al. 2008 ) . These
Birthing and Building Nascent Cleft
Teams in Developing Countries
Emad Hussein , Hala Borno, and John van Aalst
E. Hussein , M.S., FRCS, DNB (*)
Department of Orthodontics and Pediatric Dentistry,
Faculty of Dentistry , Arab American University ,
P.O. Box 240 , Jenin , Palestine
e-mail: emadhussein@rocketmail.com
H. Borno
School of Medicine ,
University of North Carolina at Chapel Hill ,
Chapel Hill , NC , 27599 , USA
e-mail: hala_borno@med.unc.edu
J. van Aalst
Division of Plastic Surgery, Department of Surgery ,
The University of North Carolina at Chapel Hill ,
7033 Burnett Womack Building , Chapel Hill , NC ,
27599-7195 , USA
e-mail: john_vanaalst@med.unc.edu

872
E. Hussein et al.
complex conditions require multiple, timed sur-
geries that then require the attention of nonsurgi-
cal healthcare providers (Abbott et al. 2011 ) .
42.2
Understanding Context
Development initiatives, whether medical, eco-
nomic, or structural, must be aligned with the
vision of the community undergoing these
changes (Gasper 1996 ) . Therefore, prior to medi-
cal intervention in a foreign setting, healthcare
practitioners must understand local concep-
tions of health and well-being. Simply asking
the question, “What does being healthy mean in
this community?” provides the starting point to
implement interventions. Exploring a communi-
ty’s representations of healthy living is essential
to understand how the local people will approach
a foreign medical team and react to the changes
implemented.
Additionally, discovering how patients with
clefts are treated within a cultural context helps
the cleft care volunteer better understand his or
her role within the cultural context of his host
country. By extension, understanding how a cleft
condition affects a patient’s daily living has impli-
cations on the patient’s postoperative course.
42.3
Foreign Physician Roles
and Language
Physicians around the world are often not treated
with comparable respect to doctors from devel-
oped countries (Gruen et al. 2004 ) . Visiting phy-
sicians must understand both the privileges and
limitations accorded to local physicians. A visit-
ing physician should understand whether or not
the local community trusts physicians, what gen-
der dynamics affect the patient-physician rela-
tionship, and become familiar with mainstream
medical practices (Verbrugge 1985 ) .
Understanding the local language has serious
implications for treatment (Wilson et al. 2005 ) .
Precise meaning may be lost in translation, result-
ing in costly mistakes. To mistranslate a patient’s
allergies or blood type can be a lethal mistake.
Multiple other errors in medications, length of
treatment, and wound care after surgery, though
not lethal, can lead to unnecessary morbidity in a
trusting patient population. These risks demon-
strate the importance of having medical transla-
tors, or team members who speak the local
language, before any attempt is made to provide
surgical care in a foreign setting.
42.4
Considerations for the Next
Trip
42.4.1 Geography
When providing medical care in foreign settings,
it is important to consider geography and land-
scape (Blaikie 1995 ) . Foreign medical interven-
tions should be both visible and accessible to the
local community. For example, if care is provided
in a mountainous area, the team should ensure
that hospitable roads are available for patients
seeking care. Think about practicalities such as
transporting essential supplies and equipment.
Will there be problems with Customs? Will tar-
iffs need to be paid on equipment that is being
transported? How will equipment be transferred
from an airport to the local hospital? Can equip-
ment/supply safety and sterility be maintained
during transit? Relief work may have unintended
effects on the surrounding environment (Debrix
1998 ) . For example, creating a cleft care facility
may rede fi ne a town by expanding its population
dramatically. Similar considerations need to be
entertained long before the arrival of the foreign
cleft care team.
42.4.2 Timing
Cleft care is time-sensitive (Abbott et al. 2011 ) .
In an ideal system, patients with clefts begin
receiving treatment as infants (Mars et al. 2008 ) .
However, in developing countries, most patients
do not have that luxury and may simply wait for
the next set of foreign practitioners. Given the
potential complexity of cleft care, foreign provid-
ers must (at least initially) arrange a regular

873
42 Birthing and Building Nascent Cleft Teams in Developing Countries
scheduled return to provide follow-up for patients
who have undergone surgery. Local practitioners
need to become involved stepwise in this plan of
care in order to eventually perform the follow-up
independently.
Timing of the surgical trips may also have
effects on the preoperative status of patients.
Traveling to perform cleft procedures during the
winter months, when many infants will likely
suffer from seasonal upper respiratory infections,
may lead to unnecessary cancellation of cases.
Travel in the Fall or Spring seasons may avoid
these problems.
42.4.3 Preparation
Suf fi cient forethought and organization is critical
for a successful trip (Mars et al. 2008 ) . Engaging
the local community prior to arrival is crucial in
order to accomplish this goal (Murray et al.
1994 ) . Foreign medical teams can, for example,
provide protocols to local staff for preparing the
facilities they hope to work in and publicize their
arrival in the local news in order to ensure that
patients make arrangements to receive necessary
care. Forethought by foreign practitioners
includes taking precautions for their own health,
ensuring that everyone receives necessary vac-
cines and has appropriate prophylactic medicines
(Hamer and Connor 2004 ) . Preparation often
entails bureaucratic arrangements, such as obtain-
ing visas, temporary work permits, and Customs
clearance.
42.5
Interdisciplinary Care
The highly interdisciplinary nature of cleft care
makes this service unique. A team providing truly
comprehensive cleft care includes surgeons,
anesthesiologists, nurses, pediatricians, speech
and language pathologists, dentists, and ortho-
dontists. The importance of incorporating all of
these disciplines on a trip cannot be overstated.
Ideally, some of these providers will be local
practitioners, helping deepen the connection
between the foreign team and local community.
Reliance on local practitioners should grow as
the work continues.
42.6
Forming Partnerships
Developing local partnerships helps the foreign
team harness suf fi cient political support, develop
alliances with medical facilities, and engage the
community more broadly (Berke et al. 1993 ) . In
the context of political instability, partnerships
may allow foreign providers access to vulnerable
populations. Developing alliances with medical
facilities is important in order to allow exchange
of resources, decrease redundancy in services,
and enable local providers to receive training
from foreign providers.
42.7
Patient Selection
Volunteer cleft care teams should hold them-
selves to the same high standards when operating
in a developing country that they hold themselves
at home. This starts with comprehensive preop-
erative evaluations of patients who are surgical
candidates (Kitlowski 1932 ) . These evaluations
can be facilitated when local practitioners play an
active role in the screening process, making refer-
rals to local physicians for diagnostic tests as
needed. Visiting professionals must not get
caught up in the need to complete a certain num-
ber of surgeries, but must maintain high safety
standards; a cancellation for appropriate reasons
simply means that the child’s surgery can be done
at a later, safer time.
42.8
Safe Surgery
Developing a “culture of safety” is paramount to
overseas volunteer work. This starts with the
group of foreign cleft care workers, but eventu-
ally must include all of the participating local
practitioners. Protocols must be instituted to pre-
pare a facility for surgery, maintain count, and
ensure that all necessary surgical steps are taken
(Gawande 2009 ) . Checklists have become part of

874
E. Hussein et al.
standard of care in developed countries and
should be instituted on volunteer surgical trips.
Surgical care should be delivered based on estab-
lished protocols. However, providers should also
be trained to adapt protocols when it is in the best
interest of a patient (Thomson et al. 2010 ) .
Setting a reasonable caseload for the trip is
also an important safety measure. Limitations on
resources, human capital, and time can affect
safety if not properly recognized (Vincent et al.
1998 ) . Cleft teams need to recognize their limita-
tions and only operate when conditions allow for
maximal safety provisions to take place (Charles
et al. 2011 ) .
Foreign providers, and eventually the more
involved local providers, need to be able to abort
a surgical case when appropriate. Saying no in
these settings can be very challenging for both
the physician and for the patient or patient guard-
ian. Patients or patient guardians may not neces-
sarily understand why not receiving surgery is in
their best interest. Clear communication using
language that can be easily understood by fami-
lies is essential. Safety is the primary argument
for denying care in the setting where risks out-
weigh bene fi ts.
42.9
Patient Follow-Up
Patient follow-up is essential (Canady et al.
1997 ) . This care is generally the most immediate
way to involve local providers, yet must be done
with careful training during the trip in order for
them to recognize and treat potential complica-
tions following surgery. The capacity to take pic-
tures and send them globally to foreign team
members can facilitate communication about
patient problems. Complications should be ade-
quately recorded, and there should be a forum
that allows honest discussion of the complica-
tions. When foreign physicians return to the local
community, patients who have previously under-
gone surgery should be seen as part of the screen-
ing process. Eventually, local providers should
play an increasingly central role to this process of
recognizing and treating complications following
surgery.
42.10 Sustainable Cleft Care
Before traveling to a developing country to per-
form cleft care, team members should have a
vision of what sustainability in a particular loca-
tion should look like. A plan for sustainability
means that visiting physicians should teach more
than treat, training local surgeons, nurses, and
paramedical personnel the standards of cleft care
(Berke et al. 1993 ) (Fig . 42.1 ). Training local
practitioners sets the stage for the care to be part
of a local independent entity in the future.
Additionally, if local healthcare providers are
able to provide adequate care, they can continue
to train others and therefore increase the human
capital providing cleft support in the area.
Training local medical personnel also empowers
the community to be self-suf fi cient and care for
their own children.
Sustainability is also contingent upon suf fi cient
funding and supplies for the care provided. Cleft
care teams need to create continuous fund-raising
initiatives, fi nding consistent ways to support the
development of cleft care in the setting of inter-
est. Cleft care is also dependent on supplies for
multimodal therapy; therefore, seeking consistent
support from supply companies can ensure that
trips are successful. Many hospitals are able to
donate unused or excess supplies. In addition to a
steady stream of supplies, a cleft care team needs
Fig. 42.1 Nurse providing postoperative care to a child
with cleft palate in Tulkarm, Palestine, 2011

875
42 Birthing and Building Nascent Cleft Teams in Developing Countries
a base facility. A physical structure that serves as
the home of cleft care simpli fi es patient follow-
up, enables storage of equipment, and serves as a
base for potential research and education projects
in the community.
A sustainable model for cleft care involves
handing off leadership to local practitioners.
Foreign providers have to establish metrics
for recognizing local cleft team members are
fully trained to provide unsupervised surgi-
cal and medical care to the local community.
Discussing these metrics with local pro-
vider sets the stage for mutual recognition of
independence.
Access to continuing education is an essen-
tial part of forming a cleft team (Davis et al.
1999 ) . Providers, both local and foreign, need
open access to fellowships, scholarships, and
educational materials. This provision also pro-
tects the community receiving care by helping
ensure that the providers are exposed to and
hence are practicing the most modern approaches
to treatment.
Another essential factor needed to make the
cleft work sustainable is enhancing local vol-
unteerism – enabling the community to feel
engaged with the work being done by the cleft
team (Sturmer and Kampmeier 2003 ) . Local
volunteerism leads to the establishment of
local conferences, fund-raisers, and activities
around the care of cleft patients. Integrating
the cleft team into the society through local
volunteerism
will
ultimately
promote
sustainability.
42.11 Research
Foreign providers developing cleft care teams in
developing countries must be sensitive to the
ethical issues regarding the conduct of research
(Buchanan and Miller 2006 ) . While research is
an important process that drives innovation and
helps to obtain sustainable funding for the cleft
team, it can also compromise the safety and pri-
vacy of patients (Hyder et al. 2004 ) . Therefore,
researchers must work closely with the local
providers to ensure that patients are fully pro-
tected. Research must receive institutional
review board (IRB) approval from both local
and foreign institutions. Additionally, all par-
ticipants must sign a consent form and have the
freedom to leave a study at any time and to
ensure that all patients are aware of their rights
in a research setting.
Research also serves as a tool for implement-
ing primary care for cleft patients. In order to
institute preventative care, researchers around the
globe must work together, using the World Health
Organization’s method of following speci fi ed
Millennium Development Goals (Mossey et al.
2011 ) . A collaborative research approach will
improve outcomes for patients with clefts
throughout the world.
42.12 Cleft Care in the West Bank,
Palestine
In 2006, cleft practitioners from the University
of North Carolina (UNC) at Chapel Hill
Department began traveling to the West Bank
and Gaza to provide cleft care. Surgical trips
have been scheduled twice a year. While foreign
surgeons are not available, local practitioners
provide follow-up to previous patients and
schedule future patients.
Practitioners who have participated in these
trips have worked with local practitioners in
order to build a sustainable cleft team. Visiting
practitioners have trained local surgeons to per-
form cleft care. From the outset of these trips,
the decision was made not to perform any sur-
gery without the presence of a local surgeon; this
has ensured that every case is the opportunity to
further the training of local practitioners. Since
2009, local surgeons have increasingly per-
formed independent repair of cleft palates; since
2010, cleft lip surgery has been done by local
practitioners.
Local providers have been given opportunities
to participate in international conferences on cleft
care, attend educational seminars, and in the con-
duct of IRB-approved research. The Palestinian
Cleft Society, established in 2007, now with
exclusively Palestinian leadership, assists in

876
E. Hussein et al.
overseeing the care of Palestinian children with
clefts throughout Palestine (Fig. 42.2 ).
In order to make cleft care in Palestine, and
throughout the world, sustainable and glob-
ally collaborative, this nascent cleft care team
has partnered with both nongovernmental and
governmental organizations like the Palestinian
Ministry of Health, the Smile Train, Operation
Smile, and ReSurge.
References
Abbott MM, Kokorowski PJ, Meara JG (2011) Timeliness
of surgical care in children with special health care
needs: delayed palate repair for publicly insured and
minority children with cleft palate. J Pediatr Surg
46(7):1319–1324
Berke PR, Kartez J, Wenger D (1993) Recovery after
disaster: achieving sustainable development, mitiga-
tion and equity. Disaster 17(2):93–109
Blaikie P (1995) Changing environments or changing
views? A political ecology for developing countries.
Geography 80(3):203–214
Buchanan DR, Miller FG (2006) A public health perspec-
tive on research ethics. J Med Ethics 32(12):729–733
Canady JW, Means ME, Wayne I, Thompson SA, Richman
LC (1997) Continuity of care: university of Iowa cleft
lip/palate interdisciplinary team. Cleft Palate Craniofac
J 34(5):443–446
Charles K, McKee L, McCann S (2011) A quest for
patient-safe culture: contextual in fl uences on patient
safety performance. J Health Serv Res Policy 16(1):
57–64
Davis D, O’Brien MAT, Freemantle N (1999) Impact of
formal continuing medical education – do confer-
ences, workshops, rounds, and other traditional con-
tinuing education activities change physician behavior
or health care outcomes? J Am Med Assoc 282(9):
867–874
Debrix F (1998) Deterritorialised territories, borderless
borders: the new geography of international medical
assistance. Third World Q 19(5):827–846
Gasper D (1996) Culture and development ethics: needs,
women’s rights, and western theories. Dev Change
27(4):627–661
Gawande A (2009) The checklist manifesto: how to get
things right. Metropolitan Books, New York
Gruen RL, Pearson SD, Brennan TA (2004) Physician-
citizens-public roles and professional obligations.
J Am Med Assoc 291(1):94–98
Hamer DH, Connor BA (2004) Travel health knowledge,
attitudes and practices among United States travelers.
J Travel Med 11(1):23–26
Hseih CJ, Hseih WS, Su YN, Liao HF, Jeng SF, Taso FM,
Hwang YH, Wu KY, Chen CY, Guo YL, Chen PC
(2011) The Taiwan birth panel study: a prospective
cohort study for environmentally-related child health.
BMC Res Notes 4:291
Hyder AA, Wali SA, Khan AN, Teoh NB, Kass NE,
Dawson L (2004) Ethical review of health research: a
perspective from developing country researchers.
J Med Ethics 30:68–72
Kitlowski EA (1932) The pre-operative and post- operative
care of congenital clefts of the lip and palate. Ann
Surg 95(5):659–666
Mangold E, Ludwig KU, Nothen MM (2011) Breakthroughs
in the genetics of orofacial clefting. Trends Mol Med
0(0):1–9
Mars M, Sell D, Habel A (2008) Management of cleft lip
and palate in the developing world. GBR, Chichester
Mossey PA, Shaw WC, Munger RG, Murray JC, Murthy J,
Little J (2011) Global oral health inequalities: challenges
in the prevention and management of orofacial clefts
and potential solutions. Adv Dent Res 23(2):247–258
Murray SA, Tapson J, Turnbull L, McCallum J, Little A
(1994) Listening to local voices: adapting rapid
appraisal to assess health and social needs in general
practice. Br Med J 308:698
National Action Plan for Cancer Survivorship: Advancing
Public Health Strategies. Livestrong. Apr 2004. http://

NationalActionPlan.pdf
Nishtar S, Jan-Llopis E (2011) A global coordinating plat-
form for noncommunicable diseases. J Health Commun
2:201–205
Pelletier DL, Menon P, Ngo T, Frongillo EA, Frongillo D
(2011) The nutrition policy process: the role of strate-
gic capacity in advancing national nutrition agendas.
Food Nutr Bull 32(2):S59–S69
Fig. 42.2 2009 Annual
Palestinian Cleft Society
Meeting banner (Ramallah,
Palestine). The title of the
conference was “Dental and
Orthodontic Needs of
Children with Clefts”

877
42 Birthing and Building Nascent Cleft Teams in Developing Countries
Sandridge AL, Takeddin J, Al-Kaabi E, Frances Y (2010)
Consanguinity in Qatar: knowledge, attitude, and
practice in a population born between 1946–1991.
J Biosoc Sci 42(1):59–82
Sturmer S, Kampmeier C (2003) Active citizenship: the role
of community identi fi cation in community volunteerism
and local participation. Belgium Psychol 43(1):103–122
Thomson MJ, Seshadri S, Swami S, Strandvik GF,
Neales K (2010) The pitfalls of protocols – a case of
postpartum splenic artery aneurysm rupture. Br Med J
Case Rep. doi: 10.1136/bcr.02.2010.2743
Verbrugge LM (1985) Gender and health: an update on
hypotheses and evidence. J Health Soc Behav 26(11):
156–182
Vincent C, Taylor-Adamns S, Stanhope N (1998)
Framework for analyzing risk and safety in clinical
medicine. Br Med J 316:1154
Wilson E, Chen AH, Grumbach K, Wang F, Fernandez A
(2005) Effects of limited English pro fi ciency and phy-
sician language on health care comprehension. J Gen
Intern Med 20(9):800–806

879
S. Berkowitz (ed.), Cleft Lip and Palate,
DOI 10.1007/978-3-642-30770-6_43, © Springer-Verlag Berlin Heidelberg 2013
43
43.1
Parameters of Care
Interdisciplinary or team care is de fi ned in the
parameters document of the American Cleft
Palate-Craniofacial Association (ACPA) as:
The staff of the interdisciplinary team may
•
include individuals from the following areas
of professional practice: anesthesiology, audi-
ology, diagnostic medical imaging/radiology,
genetic counseling, genetics/dysmorphology,
neurology, neurosurgery, nursing, ophthalmol-
ogy, oral and maxillofacial surgery, orthodon-
tics, otolaryngology, pediatrics, pediatric
dentistry, physical anthropology, plastic sur-
gery, prosthodontics, psychiatry, psychology,
social work, and speech-language pathology.
The principal role of the interdisciplinary team
•
is to provide integrated case management to
assure quality and continuity of patient care
and longitudinal follow-up.
(Of fi cial publication of the American Cleft
Palate-Craniofacial Association 2009 )
Team care is generally accepted around the
world as the best way to care for patients with
clefts and other craniofacial anomalies.
43.2
Obstacles to Team Care
in the Developing World
Ninety percent of the world’s population has
access to only 10 % of world health resources.
This leads to many barriers being present to pro-
viding interdisciplinary team care to children
with clefts in developing countries. One of these
confronted by groups traveling to the developing
world to deliver care is overwhelming numbers
of patients with clefts needing surgery. In addi-
tion, when care is provided by a foreign group
who is not part of the native population, there is
usually limited time available to see follow-up
patients. Regular follow-up speech therapy and
orthodontic care is often unavailable and dif fi cult
to provide in a single 1- or 2-week visit. Travel
for patients for follow-up on return visits may be
dif fi cult, and they may not show up.
43.3
Team Care in the Developing
World: Making It Happen
How can we begin to provide patients who are
born with clefts in developing countries the same
interdisciplinary team care we give to our patients
with clefts in the developed world? There are
basically two ways to develop team care in places
around the world where it does not exist. One is
to travel with an interdisciplinary team to a devel-
oping country to provide care for patients with
clefts and go to the same place over a long period
of time. The trip should have a strong educational
Challenges in Cleft Care
in Underdeveloped Countries
Isaac L. Wornom III
I. L. Wornom III , M.D., FACS
Richmond Plastic Surgeons ,
Clinical Associate Professor of Surgery,
Virginia Commonwealth University , 5899 Bremo Road,
Suite 205 , Richmond , VA , 23226 , USA
e-mail: wornom@richmondplasticsurgeons.com

880
I.L. Wornom III
component as part of its mission and be commit-
ted to working with local providers whenever
possible to deliver care. Dr. Hussein and his coau-
thors give a good description of how they have
accomplished that in Palestine in this chapter.
The second way is to bring providers from devel-
oping countries to the developed world to learn
interdisciplinary team care for patients with clefts
and help them take that care back to their home.
An example of this is the visiting scholar pro-
gram of the American Cleft Palate-Craniofacial
Association.
43.3.1 Mission Trips
Anyone contemplating a trip to foreign country
to provide cleft care should have a strong umbrella
organization for mission planning and coordina-
tion. There are many excellent groups around the
developed world who serve this role. The group
should have good government and medical con-
nections within the country which is the focus of
the trip. The umbrella organization should check
the credentials of the team; organize logistics of
transportation, housing, and food; arrange for
interpreters if needed; publicize the team in the
country prior to arrival; and keep longitudinal
patient medical records. It should also help iden-
tify local health-care providers who can work
with the visiting team to learn interdisciplinary
team care over an extended period of time so
knowledge of team care can grow in the host
country.
The most important thing for a successful
introduction of team care into an area by a mis-
sion trip group is a commitment to return to the
same place at least yearly for a long period of
time. Dr. Hussein and his coauthors clearly model
that in what they have done in Palestine. This
commitment allows follow-up of patients over a
long period of time, keeping of longitudinal
records, accomplishing sequenced reconstruc-
tions, introduction of speech therapy and orth-
odontic care as a component of treatment, and
evaluation of outcomes. In addition, whenever
possible, education of local providers can be car-
ried out year after year until they can provide the
care on their own without the team having to
come. This should be the end goal.
Surgical safety is extremely important. World
Health Organization surgical checklist guidelines
should be followed in the operating room (Of fi cial
Publication of the World Health Organization
2011 ) . Guidelines for the Care of Children in the
Less Developed World which was published in
2011 gives detailed recommendations regarding
anesthetic and surgical equipment and procedures
to follow for maximizing patient safety on mis-
sion trips (Schneider et al. 2011 ) . Participants on
mission trips should practice within their spe-
cialty. The developed world is not the place to do
something you do not normally do in your home
country. All trip personnel should be appropri-
ately licensed and board eligible or certi fi ed in
their specialty. Virtually all umbrella organiza-
tions and ACPA and PSEF position papers sup-
port these ideas.
Patil et al. from Nagpur, Maharashtra, India,
published “Changing patterns in demography of
cleft lip-cleft palate deformities in a developing
country: the smile train effect-what lies ahead?”
in Plastic and Reconstructive Surgery in January
of 2011 . This was a retrospective study of a three-
decade experience combined with a survey on
awareness of cleft deformities of patients treated
by the authors compared with patients treated ini-
tially by camp surgeons. In this study, there was a
marked decrease in numbers of patients with cleft
lip and cleft lip-cleft palate treated at their estab-
lished unit during this time period, but the num-
ber of patients with isolated cleft palate stayed
the same. The age of patients reporting for palate
repair was 16 months in their patients and
41 months in patients treated initially in a camp
setting. The patients operated initially in camp
settings did not have the same awareness of the
need to follow a time line treatment protocol or
awareness of their deformity and need for fol-
low-up as those operated on initially by the
authors. They speculate that camp surgeons oper-
ate preferentially on cleft lip and not on cleft pal-
ate. They conclude that the Smile Train project
has helped cleft care in India, but counseling and
improved team care should be the focus of the
future.

881
43 Challenges in Cleft Care in Underdeveloped Countries
Perhaps, the best example of how returning to
the same place for a long period of time can lead
to the development of interdisciplinary team care
is the work done in Sri Lanka by Michael Mars
and his group. They recently published a book on
their experience returning to the same place for
25 years. Their work demonstrates how consis-
tently returning to the same place can lead to
superb outcome evaluation and education of local
providers to provide interdisciplinary team care.
Management of Cleft Lip and Palate in the
Developing World by Mars, Sell, and Habal should
be read by anyone contemplating such endeavors.
43.3.2 Bringing Providers
to the Developed World
The ACPA Visiting Scholar Program is an excel-
lent example of how an individual from a devel-
oping country with the knowledge and potential
to bring interdisciplinary team care for cleft and
craniofacial patients to that country can be nur-
tured and encouraged. Each year, one individual
spends 6 weeks in North America visiting cleft
and craniofacial teams and attends the ACPA
annual meeting. The individual then returns to
their home country and uses the knowledge they
have gained to establish or improve interdisci-
plinary team care. This program has been in place
now for 15 years, and numerous examples exist
of how these people have brought team care back
to their home countries.
Dr. Peter Donkor, an oral and maxillofacial
surgeon from Ghana who was the ACPA visiting
scholar in 2005, demonstrates the effect this type
of program can have. Over the past 6 years, he
has established a multidisciplinary team at his
institution in Kumasi, Ghana. He also helped
found the Pan African Association of Cleft Lip
and Palate of which he is now president. Finally,
he began a collaboration with Dr. Michael
Cunningham of Seattle, Washington, who was
his visiting scholar sponsor promoting team care
for cleft lip and palate throughout Africa by
bringing teams from throughout Africa to Kumasi
and Seattle for training.
43.4
Summary
There are two ways to foster team care for patients
with cleft lip and palate in the developing world.
One is to travel with an interdisciplinary team to a
developing country to provide care for patients
with clefts and go to the same place over a long
period of time with a focus on educating local pro-
viders and empowering them. The second is to
bring providers from developing countries to the
developed world to learn interdisciplinary team
care for patients with clefts and help them take that
care back to their home. Both have roles to play in
the future. Those who provide this type of care
need to focus on both going forward if team care is
going to become a part of cleft care in the develop-
ing world. This should be the goal going forward.
References
Mars M, Sell D, Habal A (2008) Management of cleft lip
and palate in the developing world. Wiley, West
Sussex
Of fi cial Publication of the American cleft palate-cranio-
facial association (2009) Parameters for evaluation
and treatment of patients with cleft lip/cleft palate or
other craniofacial anomalies.
org/teamcare/Parameters%20Rev.2009/pdf . Accessed
28 Nov 2011
Of fi cial Publication of the World Health organization
(2011) Surgical safety checklist ( fi rst edition). http://

resources/SSSL_checklist_ fi nalJun08.pdf. Accessed
06 Nov 2011
Patil SB, Kale SM, Khare N et al (2011) Changing pat-
terns in demography of cleft lip- cleft palate deformi-
ties in a developing country: the smile train effect-what
lies ahead. Plast Reconstr Surg 127:327–332
Schneider WJ, Politis GD, Gosain AK et al (2011)
Volunteers in plastic surgery guidelines for providing
surgical care for children in the less developed world.
Plast Reconstr Surg 127:2477–2486

Part XV
Psychological/Team Function

885
S. Berkowitz (ed.), Cleft Lip and Palate,
DOI 10.1007/978-3-642-30770-6_44, © Springer-Verlag Berlin Heidelberg 2013
44
44.1
Introduction
44.1.1 History of Team Care
Multidisciplinary medical team care emerged as
a new form of practice when medical and surgi-
cal teams were created to treat the injured in the
United States during World War II. Craniofacial
team care, however, predates the war. The
Lancaster Cleft Palate Clinic was instituted in
1938 by Dr. Herbert K. Cooper, an orthodontist
in Lancaster, Pennsylvania, to treat patients using
the team approach. By 1943, Dr. Orvin Reidel
suggested a permanent organization to “encour-
age by every appropriate method and device the
improvement of scienti fi c clinical services to
persons suffering from cleft palate and associ-
ated deformities in order that they may achieve a
more adequate physical, emotional, social, edu-
cational, and vocational adjustment; and…we
believe that these interests and desires may be
satis fi ed by a closer and more purposeful associ-
ation of persons now interested in and serving
those patients in a variety of ways…,” thus creat-
ing the fi rst national organization devoted to
craniofacial team care and research, now known
as the American Cleft Palate-Craniofacial
Association (ACPA) (Berlin 1969 ) . The concept
of team care further advanced in the greater med-
ical community when in 1949, Dr. Martin
Cherkasky established a home-health program at
Monte fi ore Hospital in New York with the goal
of “salvag(ing) a human being, and this by indi-
vidualizing her care and by coordinating all the
facilities of the hospital and community in their
joint fi ght for health against disease” (Cherkasky
1949 ) . During this period, craniofacial teams
were being created around the country. By 1958,
Dr. George Silver’s Family Health Maintenance
Demonstration Project (also at Monte fi ore
Hospital) utilized teams of physicians, nurses,
and social workers for family health care. This
program would represent a signi fi cant in fl uence
in the development of present-day ambulatory
care programs, especially modern health team
care (Sidel 2006 ) . The concept of focusing on the
“whole patient” through interdisciplinary team
care was further re fi ned in the 1960s through
President Johnson’s “Great Society” and “War
on Poverty” through which community health
centers were formed to provide the poor and
underserved with basic health care. The most
direct event leading to the proliferation of mod-
ern medical team care occurred in 1970 when
Sidney Gar fi eld of Kaiser Permanente pioneered
the concept of “managed care,” touting improved
ef fi ciency in the health-care system by increasing
Examining the Team Process:
Developing and Sustaining Effective
Craniofacial Team Care
Lynn M. Fox and Patricia Ann Stone
L. M. Fox , M.A., Med (*)
Department of Dental Ecology , University of North
Carolina School of Dentistry ,
Campus Box 7450 , Chapel Hill , NC 27599-7450 , USA
e-mail: lynn_fox@dentistry.unc.edu
P. A. Stone , M.A., CCC-SLP
Department of Plastic and Reconstructive Surgery ,
Akron Children’s Hospital , One Perkins Square , Akron ,
OH 44308-1062 , USA
e-mail: pstone@chmca.org

886
L.M. Fox and P.A. Stone
collaboration between health-care providers to
align patient needs and provider skills. The focus
was placed on the “well patient” and coordinated
preventative care rather than focusing on the sick
patient (Baldwin 2007 ) .
44.1.2 Current Parameters
of Team Care
As team care developed in health care and par-
ticularly in craniofacial care, the team approach
was soon established as the most effective care
delivery model, providing ef fi cient care by a large
number of medical specialists who evaluate com-
plex patients relatively quickly and are able to
create a plan of treatment comprehensively
addressing patient needs. As opposed to the tradi-
tional medical model that seeks to identify and
cure disease, the craniofacial team model focuses
on all aspects of the patient’s life affected by the
craniofacial difference. Not only is the repair of
the physical difference (cleft palate or skeletal
malocclusion or any other craniofacial anomaly)
addressed, but the team also addresses the other
aspects of the patient’s social, emotional,
fi nancial, educational, and physical well-being.
Moreover, the physical issues are addressed
only as the team, including the patient and fam-
ily, identi fi es those issues causing dif fi culties.
Recent studies have also shown that hospital-
based multidisciplinary clinics considerably
reduce Medicaid costs in medically complex
children (Casey et al. 2011 ) . Interdisciplinary
team care is more challenging in health care
than in other fi elds because each patient has dif-
ferent medical needs and represents a new set of
problems which must be solved in a relatively
short period of time versus teams in business or
pure science fi elds (e.g., computer science) that
can spend months or longer to solve complex
but fi xed problems (Kuziemsky et al. 2009 ) .
Team care is simply more ef fi cient for complex
patient care.
Today, there are more than 250 cleft palate/
craniofacial teams in the United States and
Canada, and teams continue to proliferate across
the globe. The ACPA has de fi ned a cleft palate or
craniofacial team as “comprised of experienced
and quali fi ed professionals from medical, surgi-
cal, dental, and allied health disciplines working
in an interdisciplinary and coordinated system.
The purpose and goal of teams is to ensure that
care is provided in a coordinated and consistent
manner with the proper sequencing of evalua-
tions and treatments within the framework of the
patient’s overall developmental, medical, and
psychological needs.” The association further
de fi nes cleft palate and/or craniofacial teams as
including at least a speech-language pathologist,
a surgeon, an orthodontist, and a patient care
coordinator who are all appropriately trained. All
teams must also have access to psychology, social
work, psychiatry, audiology, genetics, general
and pediatric dentistry, otolaryngology, and pedi-
atrics/primary care. To be designated a craniofa-
cial team (i.e., a team that also addresses the
needs of patients who require intracranial sur-
gery), the team’s surgeon must be trained in cran-
io-maxillofacial surgery, and the team must
include a psychologist who completes neurode-
velopmental and cognitive assessments. The
craniofacial team must also have an established
referral pathway to neurosurgeons, ophthalmolo-
gists, radiologists, and geneticists (American
Cleft Palate-Craniofacial Association Commis-
sion on Approval of Teams 2010 ) .
Craniofacial and other medical/professional
teams can be categorized into three types of
teams: multidisciplinary, transdisciplinary, and
interdisciplinary. Within multidisciplinary teams,
individuals keep their own scopes of practice
sacred. Communication between team members
is generally formal and may occur through writ-
ten correspondence or a formal face-to-face or
video conference. Individual team members tend
to work independently with the ultimate goal of
combining separate specialists’ fi ndings into a list
of recommendations. The transdisciplinary team
model is characterized by fl uid professional
boundaries and unconventional roles that cross
professions. Communication between team mem-
bers is more often informal and almost always
face-to-face. Interdisciplinary teams are more of a
cross between the multidisciplinary and transdis-
ciplinary models. On interdisciplinary teams,
there is an overlapping of professional roles where
team members develop a working knowledge of

887
44 Examining the Team Process: Developing and Sustaining Effective Craniofacial Team Care
other professions as they relate to their own
examinations and combine all team members’
results to help develop a cohesive plan for patient
care. Communication can be either formal or
informal between team members. This model
encourages contributions from all specialists
on the team and promotes cross-disciplinary
problem-solving.
Of the three basic team models, the interdisci-
plinary team model is the most common type in
craniofacial team care and is seen as improving
patient care outcomes and job satisfaction for
team members (Ellingson 2002 ) . Practical appli-
cation of the interdisciplinary model, however,
has the potential to invoke tension, defensiveness,
or “turf” issues due to overlapping professional
roles. Craniofacial teams require that many pro-
fessionals work together in a climate where all
team members are perceived as equals with an
equal say in the determination of patient care.
This process requires excellent communication,
trust, respect, and a willingness to compromise
on the part of all. Issues inevitably arise when so
many complex patient care issues are involved.
Since team members meet together for a rela-
tively short period of time each week, these issues
may be unaddressed, compromising team func-
tioning and ultimately the quality of patient care.
Therefore, the development of a successful team
requires careful team formation, development of
a team mission, balancing the composition of the
team, and consistent team leadership. Sustaining
successful teams entails ongoing attention to the
team process through the development and main-
tenance of effective decision-making skills, col-
laboration skills, communication skills, clearly
de fi ned team roles, mutual trust and respect, team
goals, con fl ict management skills, an awareness
of the in fl uence of values, and a strong code of
ethics.
44.2
Establishment of Teams
44.2.1 Team Formation
Every year, new craniofacial teams form around
the world to help meet the needs of children and
adults af fl icted with cleft lip and palate and/or
other craniofacial conditions. Regardless of
where or how a given team is created, all teams
tend to follow four classical stages of team devel-
opment: forming, storming, norming, and per-
forming. These stages were fi rst outlined by
psychologist Bruce Tuckman in 1965 (Tuckman
1965 ) .
The forming stage occurs when a team is fi rst
conceptualized and created. The mission, size,
and membership criteria must be set. This stage
provides the essential foundation for future suc-
cess of the team.
In order to reach the point where the decision-
making process can be established, the storming
stage must occur. This stage involves bids for
power or in fl uence and tends to include emotional
arguments that continue until the necessary
ground rules for decision making are agreed
upon. While this stage can be uncomfortable for
team members, it is necessary for continued team
maturation. This is the stage where the team lead-
er’s ability to handle con fl ict becomes crucial.
Once the team has agreed upon how to make
decisions, the norming stage begins where team
rules and processes are decided. The unwritten
norms of acceptable team member behavior are
another product of this stage. These norms will
guide the team in how to work as a coordinated
unit.
The performing stage, the fi nal stage origi-
nally delineated by Tuckman, is where the team
begins a collaborative working relationship. This
point of team development is the fi rst time the
team actually functions as a truly collaborative
unit to address the goals for which the team was
developed in the fi rst place: care of the craniofa-
cial patient. The accomplishments that the team
enjoys during this phase tend to unite the team
more closely, reinforcing the team identity
(Cardona and Miller 2000 ) .
Teams are constantly evolving as evidenced
by the fact that rather than remaining at the per-
forming stage, healthy teams eventually transi-
tion to a new forming stage where they tackle
increasingly challenging tasks. Affection and
trust increase as team members have the opportu-
nity to recognize and value the other members’
efforts and capabilities. A new storming stage
follows as the team assumes new goals, which in

888
L.M. Fox and P.A. Stone
turn leads to an improved norming stage. This
trend culminates in an improved performing
stage and continual maturation of the team.
However, a sudden and radical change in team
membership may alter the team’s identity enough
to set the team’s formation back to less fully
developed levels.
In 1977, Tuckman added a fi fth stage of team
development called the “adjourning” stage where
the team completes its task and disassembles
(Tuckman and Jensen 1977 ) . Most craniofacial
teams do not reach the adjourning stage since the
needs for their service continue until a patient
becomes an adult and new babies continue to be
born with cleft palate and other craniofacial
anomalies. Budget cuts, the establishment of too
many teams serving one small geographic area,
and fl uctuations in health-care funding are exam-
ples of situations that can necessitate the
“adjourning” of a craniofacial team. Occasionally,
teams are meant to be temporary as in the exam-
ple of craniofacial teams from more developed
countries that travel to countries lacking cranio-
facial team care (or who are in the midst of politi-
cal strife or natural disaster), with the express
goal of helping to establish indigenous teams
(Strauss et al. 2011 ) .
44.2.2 Team Mission
One of the fi rst steps in establishing any team is
the development of a strong team mission state-
ment that provides the entire team with a uni fi ed
goal. This statement should be generated and
agreed upon by the entire team to ensure every-
one’s commitment. The team mission should
not be a static document or concept and should
be revisited over time to be re fi ned or replaced
with a more appropriate vision as the needs and
purposes of the team develop and mature.
A dynamic team mission statement should provide
the basis for maintaining high ethical standards.
Craniofacial team missions should incorporate
all aspects of the team’s functions and typically
include patient care, research, public service,
education, etc. For example, the mission state-
ment for the University of North Carolina
Craniofacial team in Chapel Hill, North Carolina,
is “to provide optimal care for patients with cleft
lip, cleft palate and other craniofacial anomalies
through an interdisciplinary team-oriented
approach and to stimulate biological, behavioral
and clinical research that will ultimately lead to
an improved quality of life for our patients”
(University of North Carolina Craniofacial
Team website 2011 ) . Similarly, the mission
statement for the Akron Craniofacial Team in
Akron, Ohio, is as follows: “to optimize the care
of individuals affected with cleft lip and palate
and other craniofacial anomalies, through edu-
cation, research and the promotion of interdisci-
plinary team care. We strive to do this in a
congenial atmosphere which fosters trust and
con fi dence” (Lehman J, 2011, personal commu-
nication). Such mission statements provide a
uniting purpose for the team.
44.2.3 Team Composition
Team size and diversity have also been identi fi ed
as areas with signi fi cant effects on team devel-
opment. Typically, teams of less than fi ve people
may not possess enough different perspectives,
while teams of more than 25 members may
encourage the formation of subgroups and so
have dif fi culty collaborating (Katzenbach and
Smith 1994 ) . Diversity of team members has
been shown to provide a foundation for more
complex and complete collaboration (Bolman
and Deal 1992 ) . Too much diversity may ham-
per common understanding and shared interests,
while too little diversity may encourage
“inbreeding,” “group think,” and “lack of com-
plementary skills” (Cardona and Miller 2000 ) .
As the team comes together, the members work
toward becoming acquainted with each other
and developing complementary technical, prob-
lem-solving, and interpersonal skills. These
skills develop further over time. During this
stage, members often experience feelings of
insecurity and anxiety until they de fi ne and
agree upon their mutual expectations regarding
team functioning and members’ expectations
(Cardona and Miller 2000 ) .

889
44 Examining the Team Process: Developing and Sustaining Effective Craniofacial Team Care
The ACPA requires that cleft palate and/or
craniofacial teams have speci fi c disciplines
involved in team care as previously stated. Yet
given health-care models, one also must include
health administrators, lawyers, and insurance
companies. In addition, teams may have more
than one person representing each discipline. The
large size and diverse composition of many cran-
iofacial teams can pose challenges to developing
a high performing team.
44.2.4 Team Leadership
The role of team leader is pivotal. While many
roles are somewhat fl uid with the degree of
impact fl uctuating over time and situation, the
team leader remains a constant presence, keeping
the team on the path set forth in its mission.
Teams vary regarding the amount of in fl uence
and effectiveness held by its leader. The outlook
of the team is generally shaped by its leader and
is generally established early in the leader’s ten-
ure along with the expression of clear expecta-
tions for attendance, guidelines for constructive
discussion, con fi dentiality, task completion, and
equality of members’ contributions (Katzenbach
and Smith 1994 ) . Once the team expectations are
communicated, it is the team members’ duty to
follow the rules and the team leader’s responsi-
bility to enforce them.
The team leader also has the responsibility of
eliminating situations that represent barriers to
the team’s performance. On the organizational
level, institutional managers may not have expe-
rience with or knowledge of the medical team
approach. For this reason, they may not provide
adequate or appropriate support to the team. In
this situation, the team leader would need to
advocate for the team to insure appropriate
resources are provided. On the team level, an
absence of clearly established rules, roles, or pro-
cedures can adversely affect team performance,
sometimes leading to interdisciplinary rivalry.
In healthy team functioning, team decisions
are based on the input of all team members. In
order to help promote equality of team members,
some teams rotate their team leaders so as to
grant equal status to all professional groups
(Horwitz 1970 ; Strauss and Broder 1985 ; Strauss
1999 ) . In less functional teams, the team leader
(often a physician) may make decisions without
careful consideration of other members’ input,
thereby reinforcing a skewed balance of power
and limiting team outcomes (Mason and Riski
1982 ) .
Most leaders have a preferred style of team
leadership, of which there are several. Teams that
were created by one or two dynamic individuals
sometimes tend toward an authoritative model of
leadership whereby the founder guides the team
toward speci fi c goals. This model may generate
dedication to the team as a bene fi t of having such
a dynamic leader. This “authoritative” style of
leadership often encourages positive outcomes
and attitudes and is most likely to keep the team
on track toward the basic mission (Goleman
2000 ) . The team leader also must clarify the
team’s goals and must establish effective proce-
dures to resolve problems in order to maintain a
functional team (Baldwin 2007 ) . Care must be
taken, however, that an “authoritative” style does
not devolve into an “authoritarian” style.
With in the af fi liative style of team leadership,
the team leader places people and interpersonal
relationships before all other goals. This style
promotes closer bonds between team members
and encourages a familial dynamic. It may also
help patients’ families feel more welcomed as
members of a cohesive team. While this type of
leader can help bring the team together and mini-
mize divisiveness, the team risks losing sight of
its mission unless the leader provides guidance
toward the team’s basic goals and mission.
The “coaching” style focuses on improving
the skills of individual team members and mov-
ing the team toward excellence. While this repre-
sents a positive leadership model, the main focus
for craniofacial care needs to be improving
patient and family care.
Many teams function under a “democratic”
style of leadership which Goleman suggests
“builds buy-in or consensus” (Goleman 2000 ) . In
the case of a craniofacial team where the team
members are from different professions and the
decisions are quite complex, consensus is not

890
L.M. Fox and P.A. Stone
always possible. Lack of consensus may lead to
stagnation in team development, maturation, and
modernization.
Leadership needs vary as teams grow and
develop. In the early stages of development, most
teams will have one or two de fi ned leaders. At
this point, directive leadership is required as most
team members are inexperienced and therefore
hesitant to get involved. Research has shown that
teams without a formal leader perform worse
than those with a de fi ned leader (Farkas and Hill
2001 ) . The leader’s role at this stage is to help
create a structure for the team, establish team
norms, clarify tasks, provide vision, and chal-
lenge the team toward maximal performance
(Heinemann and Zeiss 2002 ) .
Once the roles of the team are established, the
team leader’s primary role changes to a consul-
tant and source of inspiration for continued team
growth. The leader also must continue to provide
and arrange for the necessary internal and exter-
nal support to keep the team functioning
ef fi ciently and effectively (Heinemann and Zeiss
2002 ) .
44.3
Team Process
44.3.1 Decision Making
While the contributions and talents of the team
members and the team leader are important to
effective team functioning, the processes that the
team members employ to interact with one
another and to achieve team goals are equally
predictive of team success (Marks et al. 2001 ) .
One of the most essential elements of the team
process is the manner in which decisions are
made. The goal of medical team decision making
is to optimize patient outcomes in all aspects of
patient care. Unfortunately, teams tend to focus
on immediate solutions to problems, omitting the
crucial steps of critical thinking and careful delib-
eration. This omission is compounded by groups’
tendency to pursue the fi rst suggestion proposed
rather than continue to explore alternative solu-
tions. Even when teams subsequently identify
superior alternate solutions, they tend to support
the fi rst suggestion, especially if the “opinion
leaders” in the group have endorsed it (Maier
1967 ) . Consequently, the solutions recommended
by the team are likely to be simplistic and may
not be optimal (Farkas and Hill 2001 ) .
Establishing a clearly de fi ned method for
making decisions can encourage teams to incor-
porate this important step. Before embarking on a
discussion about a problem, the team must distin-
guish between the symptoms and the core of the
problem. Patient care decisions must be explored
from various surgical, speech, dental, social, and
psychological perspectives. Once the problem is
de fi ned, the team must prioritize the issues
involved. When dealing with medically complex
patients, prioritization of medical problems is
essential to comprehensive care. Similarly, iden-
tifying problems in craniofacial team functioning
may be a complex process with numerous profes-
sional and interpersonal nuances. The team must
carefully select an action plan with deadlines to
avoid rehashing the problems without advancing
to resolution.
Once the problem is identi fi ed, the team is
ready to discuss possible solutions or treatment
options. Here, the key is to provide an environ-
ment where team members feel comfortable
sharing ideas without concern for criticism or
repercussions. No idea should be dismissed
without careful consideration. Even discussion
of seemingly outlandish solutions may prompt
creative solutions that may not have emerged
otherwise.
When various possible solutions have been
presented, the team must identify the most prom-
ising solutions in order to develop a team consen-
sus. When consensus cannot be reached, teams
must balance consensus with personal feelings
and outcomes (Eisenhardt et al. 1997 ) . Con fl ict
will likely occur during this process. It is the
responsibility of team members and especially
their leader to direct the team toward positive
resolution.
When all team members are involved in devel-
oping and fi ne-tuning the solution, commitment
to that decision is more likely than when one
team member conceives the solution and con-
vinces the rest of the team to support it. However,

891
44 Examining the Team Process: Developing and Sustaining Effective Craniofacial Team Care
theoretical commitment is not suf fi cient to solve
a problem. The team must specify the “who,
what, where, and when” of the action plan and
monitor it to its completion (Farkas and Hill
2001 ) . The purpose of this process is to ensure an
action plan endorsed by team members at the
conclusion of the discussion.
The challenge of monitoring action plans
regarding patient care is that many of the recom-
mendations may involve outside providers who
may or may not complete the plans as conceived
by the team. Another issue is that the patient may
not follow through with recommended interven-
tions between team visits. The challenge for
action plans related to the team’s internal func-
tioning (such as those improving team ef fi ciency)
is that patient care always comes fi rst, limiting
the opportunities to complete the action plan.
Since improved team process can lead to more
accurate and in-depth decision making, it is
patient care that is ultimately impacted.
44.3.2 Team Roles
The roles that team members tend to assume also
affect the team process. When team members’
professional roles are clearly de fi ned, patients’
and team members’ mutual trust and respect are
fostered. Professional/formal roles for each mem-
ber are typically de fi ned by an individual’s clini-
cal expertise during the early stages of team
development. The expectations for these formal
roles include the successful completion of their
discipline-speci fi c responsibilities.
In addition to professional roles, there are
informal roles that individuals tend to assume
which often depend on personality, life experi-
ence, and institutional constraints. These infor-
mal roles include positive roles related to
completing tasks and managing personal/social
situations and negative roles that actually hinder
team functioning (Benne and Sheats 1948 ) . Most
teams will have members who ful fi ll many of
these roles. People tend to drift in and out of dif-
ferent roles depending on their own personalities,
their position on the team (depending on the level
of equality among team members), and the
situation at hand. It is important that team mem-
bers take on the positive team roles to ensure
effective team process.
Task-focused roles include the “initiator/con-
tributor” who proposes original ideas and differ-
ent ways of approaching group problems,
procedures, or goals. This person tends to initiate
discussions and move the team into new areas of
exploration. The “information seeker” requests
clari fi cation of comments in terms of their accu-
racy, seeks information relevant to the problem,
and determines missing information that is
needed before moving forward. The “information
giver” provides factual information to the group
and is seen as an authority. The “opinion seeker”
seeks clari fi cation of the values, attitudes, and
opinions of group members and ensures different
perspectives are provided. The “opinion giver”
expresses his or her own opinions and beliefs
about the subject being discussed. The “elabora-
tor” takes other people’s initial ideas and builds
on them with examples, relevant facts, and data
while considering their consequences. The “co-
coordinator” identi fi es and explains the relation-
ships between ideas. The “orienter” reviews and
clari fi es the group’s position and summarizes
what has been accomplished, explains where the
group has digressed, and suggests how to refocus
on the goal. The “evaluator/critic” evaluates pro-
posals to assess the reasonableness, factuality,
and manageability of a proposal. The “energizer”
challenges and stimulates the group to take fur-
ther action. The “procedural technician” facili-
tates group discussion by supplying logistical
planning such as meeting location and required
supplies. The “recorder” records information
from team meetings to provide documentation of
team meetings.
Personal and/or social roles include the
“encourager” who praises, agrees with, and
accepts contributions of others. The “harmo-
nizer” mediates the differences between other
members, attempts to reconcile disagreements,
and relieves tension in con fl ict situations. The
“compromiser” offers to change his or her posi-
tion for the good of the group. The “gatekeeper/
expediter” encourages or facilitates the participa-
tion of others. The “standard setter” sets limits on

892
L.M. Fox and P.A. Stone
acceptable individual behavior within the group.
The “observer” provides feedback to the group
regarding team functioning. The “follower” con-
tributes little to group discussion and accepts
whatever other team members’ decision.
Dysfunctional or blocking roles include the
“aggressor” who belittles and insults team mem-
bers or their proposals. The “blocker” opposes
every idea or opinion without making his or her
own suggestions. The “recognition seeker” uses
group meetings to draw attention to himself or
herself through boasting about personal achieve-
ment. The “self-confessor” uses the audience
opportunity to express personal feelings unre-
lated to the team. The “disrupter” distracts other
people by telling jokes, playing pranks, or even
reading unrelated material as a way to evade
work. The “dominator” attempts to control the
conversation and dictate team members’ activi-
ties to manipulate the group or certain members
of the group. The “help seeker” attempts elicit a
“sympathy” response from other group members
through expressions of insecurity, personal con-
fusion, or excessive self-deprecation. The “spe-
cial interest pleader” speaks for a speci fi c small
group, usually cloaking his or her own prejudices
or biases in the stereotype which best fi ts his or
her individual needs.
In general, most of the task-focused and per-
sonal/social team roles are necessary to team
functioning and in fact enhance team perfor-
mance. The dysfunctional/blocking roles, while
familiar to many situations, actually detract from
team performance. Redirection of team members
who assume these roles is essential to establish-
ing the foundations for a successful team. How
people interact and relate to one another will
determine how successful the team will be at
achieving its mission (Benne and Sheats 1948 ) .
44.3.3 Development of Team
Collaboration Skills
The quality of the interaction between team
members within their formal and informal roles
is directly related to each of the team members’
collaboration skills. The Joint Commission on
Accreditation
of
Healthcare
Organizations
(JCAHO) requires that teams produce “jointly
created and implemented treatment plans”
(JCAHO 1996 ) . Multidisciplinary teams (where
each medical professional independently evalu-
ates the patient and then each of the individual
professionals reports results within his or her own
specialty) do not always accomplish this goal.
Rather, team members may feel that team meet-
ing is not an effective use of their time. More suc-
cessful team collaboration occurs when the lines
between team disciplines are blurred (as in inter-
disciplinary and transdisciplinary teams) and the
focus of team discussion is transferred from
the individual specialist’s recommendations to
the needs of the patient in reference to the
patient’s quality of life (Bokhour 2006 ) .
In order to attain this goal and effectively
function in such a wide arena of care with so
many variables affecting patient outcomes, team
members must establish a number of skills
speci fi c to team collaboration. The taxonomy of
collaboration has many elements. The most uni-
fying element of any craniofacial team is the care
of a core set patients and hopefully a strong desire
to provide state of the art care. Unity, however, is
not achieved by a common cause alone. Strong
collaboration skills, working together rather than
side by side, are necessary to ensure that cranio-
facial team outcomes surpass what each individ-
ual team member could accomplish working
alone. True collaboration requires time, commit-
ment to a common goal, and communication.
44.3.4 Communication
An essential element of collaboration and the
team process is communication. The vitality of a
team can be measured by the degree to which it
develops an ef fi cient way to internally commu-
nicate important information, a high level of
enthusiasm and energy, a shared “event-driven”
history, personal commitment, and impressive
performance results (Katzenbach and Smith
1994 ) . Research has shown that effective team
communication leads to enhanced patient and
family satisfaction, reduced length of hospital

893
44 Examining the Team Process: Developing and Sustaining Effective Craniofacial Team Care
stay, reduced costs, and improved diagnostic and
prognostic abilities of health-care workers versus
professionals working independently (Suter, 2009 ).
The Joint Commission on Accreditation of
Healthcare Organizations (JCAHO) established a
goal in 2004 to improve the effectiveness of com-
munication among caregivers in its National
Patient Safety Goals (Eldridge and Revere 1995 ) .
A requirement was added in 2006 that health-care
organizations implement a standardized approach
for
communication
between
professionals
(Eldridge and Revere 1996 ) . In 2007, it released
a statement that communication failures were
the main cause of patient harm in 65% of cases
(Revere and Eldridge 2007 ) . Singh et al. reported
that 70% of teamwork failures stemmed from
communication breakdowns and “handoff”
errors (Singh et al. 2007 ) .
The team meeting is the forum for most inter-
nal team communication. Many teams meet as a
group in a round-table format on a regular basis
(usually weekly or monthly, depending on the
volume of patients at a particular center) to dis-
cuss evaluation results and plan patient care.
Other teams, however, communicate electroni-
cally. In some cases, each team member will sim-
ply send their written evaluation to a team leader
who collates the information into a “team” report.
Written communication lacks important nonver-
bal cues, sometimes resulting in misunderstand-
ing which can lead to a lack of openness,
undermined trust, and compromised partner-
ships. Without the bene fi t of team discussion,
true team collaboration cannot occur and patient
care suffers.
During group discussions, dialogue should be
open but managed. Managing effective commu-
nication during team meeting involves a series of
steps including obtaining information, de fi ning
the problem, applying necessary criteria, discuss-
ing alternative and assessing all options, and
developing a patient care plan or solution.
Addressing each of these steps increases the
probability that the team is communicating
pro fi ciently. Assigning a speci fi c facilitator to
ensure that each member of the team is attending
to all of these steps can increase the amount of
ownership and responsibility each member feels
for the team decision (Cardona et al. 2000). The
importance of this facilitator is reinforced by
research that shows that groups tend to elect the
fi rst solution that is supported by the “opinion
leaders” of the group, even when technically
superior solutions are later presented (Maier
1967 ) . As a result, the “opinion leaders” of a
team may wait to endorse any solution until all of
the solutions have been proposed in order to avoid
compromising the decision-making process.
A speci fi c behavior that hampers communica-
tion on a craniofacial team is the use of discipline-
speci fi c jargon during discussions with other
team members and especially with patient fami-
lies. Using vocabulary that is not shared by others
hinders their comprehension and ability to incor-
porate the information into the team discussion.
This can deter communication and represents a
barrier to the inclusion of the patient and patient
family as members of the team (Strauss and Ellis
1996 ) . The patient’s family plays an important
role on the team, and communication issues affect
their ability to fully contribute to, comprehend,
and comply with the team goals and recommen-
dations. The mode of communication between
the patient, family, and the rest of the team is
multifaceted. The patient and/or family typically
communicates with each team member face-to-
face during the patient’s evaluation and have the
opportunity to voice their agreement or concerns
about potential patient recommendations.
On some teams, the patient and family may
physically meet with the entire team to discuss
recommendations. In this case, the patient/family
has a second opportunity to weigh in on the plan
for the patient, especially important since new
recommendations often emerge through the team
meeting. With tightening of hospital and clinic
budgets, however, fewer teams are able to com-
mit to the time required to meet with the family a
second time. In an attempt to provide an opportu-
nity for the patient/family to provide some feed-
back, some teams have a representative from the
team meet with the family after team meeting.
Unfortunately, team meeting days tend to be quite
long for the patients and families, and a second
meeting with the team often adds 1–2 more hours
to their visit.

894
L.M. Fox and P.A. Stone
Whether or not the family meets with the team
a second time for fi nal recommendations, the
family will typically receive a written summary
of the team’s recommendations. This document
must serve as both a medical document of the
plan of care for the patient and a formal commu-
nication of fi nal recommendations between the
team and the family. The choice of vocabulary
(e.g., avoidance of medical jargon) and appropri-
ate reading level are key to establishing effective
communication with the family and other profes-
sionals involved with the patient’s care. Poor
communication often leads to poor patient fol-
low-through with team recommendations.
One way to encourage open communication
between the team and the patient/family is to
establish a parent advisory council. These coun-
cils often contribute invaluable information from
the parent perspective regarding the delivery sys-
tem of the team (team visits), communication or
lack of communication from the team, compre-
hension of the material the team provides to the
parents, cost, time, and overall opinions of care
delivery.
44.3.5 Mutual Trust and Respect
Mutual trust is the basic foundation of any rela-
tionship, no less so on a craniofacial team. Trust
among team members is essential as it creates a
safe environment in which every member feels
free to contribute to the team discussion, thus
improving team collaboration. In order for a
craniofacial team to function adequately, inter-
disciplinary team equality and mutual respect
must be established and actively maintained, as
professional hierarchies and dominance that
typically occur in medicine may suppress com-
munication and result in submissive behavior
from members of subordinate disciplines
(Strauss and Broder 1985 ) .
The length and stability of a team’s relation-
ship over time also creates the opportunity for
individual rapport and mutual understanding to
develop. This situation can be both positive and
negative, however, in that long-standing teams
may stagnate and resist change to their established
approach to patient care and team functioning.
Incorporating new and young professionals on
craniofacial teams is crucial for longevity and
continuity of care; however, the new profession-
als may feel intimidated and may not immediately
be accepted. They may have “new” innovative
ideas that may threaten the “this is the way we
have always done it” philosophy. Seasoned pro-
fessionals may also feel threatened and feel their
position is in jeopardy. As stated above, the team
needs to enhance mutual understanding and
enable appreciation for each member’s profes-
sional skills. Parity or equality is the ideal for
each team to achieve. Equal participation and
involvement ensures that each team member con-
tributes to team decisions. Lack of participation
may mean that strategic objectives are not owned,
resulting in a risk of low morale and sti fl ed
innovation.
To develop respect among team members,
each member must be assured of his or her own
competence and that of each member of the team.
The norms and standards of practice of other
professions on the team should also be consid-
ered. Both of these elements require education.
Interdisciplinary meetings such as the ACPA
annual meeting provide each discipline with indi-
vidual educational opportunities in their own spe-
cialty as well as in other team disciplines. Training
medical students in team care skills is another
means of instilling respect for team care. The
Canadian Interprofessional Health Collaborative
created the Interprofessional Education program
(IPE) to train health-care students for future
interprofessional teams. Students taught in this
approach demonstrated respect and positive atti-
tudes toward their colleagues and worked toward
improving patient outcomes (Bridges et al.
2011 ) . A well-functioning team possesses at least
a basic knowledge of the breadth of its specialties
and the skills necessary for collaborative practice
(Bridges et al. 2011 ) .
Once trust and respect are established, levels
of team participation should be assessed. While
team members’ contributions should be as bal-
anced as possible, several factors besides profes-
sional status affect the degree of engagement for
each team member. Linguistic styles of team
members, for example, may vary in regard to lev-
els of directness, conversational turn-taking, rate

895
44 Examining the Team Process: Developing and Sustaining Effective Craniofacial Team Care
and tone of conversation, loudness, humor, etc.
Cultural differences on the team may affect
degree of eye contact, willingness to disagree
with a perceived superior, or ability to interpret
meanings of culture-speci fi c idioms. Gender dif-
ferences also play a role. Women tend to wait for
acknowledgement prior to speaking, provide an
opening for others to comment between their
statements, and allow for longer pauses in the
conversation before commenting. These tenden-
cies may reduce the amount of women’s partici-
pation in team meetings, resulting in the
impression that women wield less authority on
the team (Tannen 1995 ) . Since, as previously
mentioned, the recommendations that are offered
repeatedly are the most likely to be implemented,
team members whose participation is limited for
any reason are at a disadvantage (Farkas and Hill
2001 ) . These examples of participatory imbal-
ance can lead to a loss of mutual trust and respect,
missed opportunities for new ideas, frustration,
and eventual loss of commitment to the team.
The development of protocols has been shown
to be bene fi cial to de fi ne each member’s roles,
expectations, and responsibilities (Vargervik
et al. 2009 ) . The ultimate goal of these protocols
is to clarify and help ensure that all aspects of
patient care are addressed. Another bene fi t is the
potential prevention of con fl ict on the team with
such issues a “turf-wars” over which professional
handles each aspect of care. When institutions
have multiple surgical specialties represented on
their teams, issues may arise as to which surgeon
will perform speci fi c procedures. Another exam-
ple would be an overlap of services when regis-
tered nurses and speech-language pathologists
both address feeding concerns. Protocols help
de fi ne the aspects of patient care for which each
discipline is responsible. These protocols or
patient care maps help streamline the patient
referral process and improve the consistency and
quality of patient care (Wall 1998).
44.3.6 Creation of Team Goals
Every team needs goals which are not only
measurable but also are attainable, results-
focused, and which serve to foster teamwork
and collaboration (Katzenbach and Smith 1994 ) .
A strong team mission should lend itself to the
creation of measurable team goals. The goals of
craniofacial teams should always be centered on
the ultimate outcome of improved patient care.
Striving for the best care of the patient, how-
ever, does not mean that all goals must directly
involve the patient. Improved team functioning
translates to improved patient care. Therefore,
craniofacial team goals should also address
internal team functioning as a precursor to
improved patient care. Short-term goals should
include a focus on small improvements that can
be swiftly attained to provide for more frequent
positive reinforcement for the team as a whole
(Katzenbach and Smith 1994 ) . With more posi-
tive team experiences, team members are more
likely to show increased commitment to the
team. As the team evaluates what works and
what does not work when interacting with each
other, teamwork skills will be developed and
honed more rapidly. Working on goals that do
not have high stakes associated with them (such
as those that do not directly involve patient care)
allows for the team to establish and develop the
skills for collaboration in a less emotionally
charged atmosphere. Building upon these short-
term, low-status goals, teams should develop
higher impact goals to improve patient care.
Developing goals is a process that is unique to
each craniofacial team. Goals should focus on
team functioning and patient care outcomes.
Many teams focus solely on the patient care
aspect of team care and do not directly address or
monitor how the team functions when developing
goals. As Nichols, DeFriese, and Malone state in
Team Performance in Health Care , “Such beliefs
devalue team process and result in unreasonable
limits on the amount of time organizations permit
teams to grow, develop, improve, and become
collaborative working units. During periods of
downsizing and cost containment, teams often
fail to take the time to develop their process activ-
ities. This can result in inef fi ciency and reduced
productivity of the team” (Nichols et al. 2002 ) .
Finally, each craniofacial team must examine
the expectations, rules, and regulations of the
organization in which it functions. If the cranio-
facial team is independent, it must establish its

896
L.M. Fox and P.A. Stone
own organizational expectations. If not indepen-
dent, teams may face differing expectations,
rules, and regulations from different interdisci-
plinary units participating on the team and from
the institutions in which they operate. There are
also insurance company constraints with which
to contend. Each state and/or county has regula-
tory demands and restrictions. It is imperative
that the team investigates its fi nancial support
and services. Each of these areas must be
addressed in order to develop a cohesive team
that is primed to deliver ef fi cient and effective
patient care.
44.3.7 Managing Con fl ict
Functional con fl icts are natural when people
work together, and without these differences,
teams can become complacent, eventually under-
mining team collaboration. Amason describes
“cognitive” or “c-type con fl ict” versus “affec-
tive” or “a-type con fl ict” as a difference of focus.
With cognitive con fl ict, the focus is on issue-
related differences of opinion. With affective
con fl ict, however, the focus shifts to disagree-
ments which involve attacks on the person rather
than the issue. Without c-type con fl ict, the team’s
decisions represent the decisions of the most
vocal or the most in fl uential members, undermin-
ing team effectiveness and diminishing the qual-
ity of the team’s decisions (Amason et al. 1995 ) .
This situation leads to less than optimal patient
care and poor outcomes, although as Strauss
states, “con fl ict within a team and its delibera-
tions may be natural, inevitable, and productive”
(Strauss 1996). Productive con fl ict occurs when
diverse perspectives are discussed and an opti-
mized solution is developed. This solution repre-
sents a synthesis of ideas rather than a single
person’s standpoint. The absence of con fl ict may
also be detrimental to team performance. The
downfall of a team begins with inattention to
team outcomes, poor accountability, lack of com-
mitment, and the avoidance of con fl ict, all culmi-
nating in an absence of trust (Lencioni 2002 ) .
One of the most dif fi cult and essential roles of the
team leader is to manage con fl ict on the team to
ensure that it is productive. Without a strong
leader, healthy con fl ict, while inevitable and actu-
ally necessary, can deteriorate into personal
attacks which have damaging effects on the team.
Therefore, the team leader must encourage an
environment where team members feel safe and
supported so they are unafraid of taking part in
constructive con fl ict to optimize patient care
(Farkas and Hill 2001 ) .
In order for a team to function optimally, team
members must value individual team members’
differences. This permits open discussion and
examination of potential underlying assumptions
without personal attack. When con fl ict becomes
personal, con fl ict becomes negative and may call
into question personal motives or even team
members’ professional competence. Avoiding
con fl ict, however, often encourages “groupthink”
where team members do not communicate their
professional criticisms or concerns (Farkas and
Hill 2001 ) . This situation does not allow for
diverse viewpoints to be heard and limits the
scope of team discussion, ultimately affecting the
quality of the team’s decisions. On the other
hand, well-managed encouragement of construc-
tive con fl ict increases the likelihood of producing
the best possible patient care plan (Margolis and
Fiorelli 1984 ) . Engaging in affable and profes-
sional group discussion on an equal basis
increases the degree of team member understand-
ing, commitment, and ownership of team deci-
sions (Amason et al. 1995 ) . Without strong
“buy-in” regarding team decisions and/or patient
recommendations, the team is at greater risk for
individual members to subvert patient care plans
for their own purposes, causing damage to team
morale and potentially calling into question the
merits of the team recommendations. Another
possible outcome of suppressing con fl ict within
teams could be future retaliation (conscious or
subconscious) between team members (Farkas
and Hill 2001 ) .
Although cognitive con fl ict can have positive
effects on care, affective con fl ict can cause dys-
function. Affective con fl ict disrupts a group from
accomplishing its goals, and disagreements in a
team can quickly turn into personal dislikes
(Townsley 2011 ) . It typically results in less

897
44 Examining the Team Process: Developing and Sustaining Effective Craniofacial Team Care
individual productivity and creates a cycle of
negativity. This limits the creativity and growth of
the team because the resulting combative environ-
ment deters members from making suggestions
that differ from the status quo in order to avoid an
escalation of the con fl ict (Phillips 2011 ) .
Identifying the conduct and patterns that lead
to dysfunction is the fi rst step toward solving the
problems. Multiple con fl ict management theo-
ries and management styles are available. The
Thomas-Kilmann Con fl ict Mode Instrument
is an example of an instrument that identi fi es
which style team members tend to use during
con fl ict situations to determine levels of asser-
tiveness and cooperativeness. Responding to
con fl ict with competition is considered asser-
tive and uncooperative, accommodation is
unassertive and cooperative, avoidance is unas-
sertive and uncooperative, collaboration is
assertive and cooperative, and compromise is
moderately assertive and moderately coopera-
tive (Thomas and Kilmann 1974 ) . A balance
between assertiveness and compromise sets the
stage for positive con fl ict.
Once the different styles of con fl ict resolution
are understood, the best approach to a given situ-
ation can be generated. The Interest-Based
Relational (IBR) Approach is a method that
respects individual differences while avoiding
becoming too fi xed on a speci fi c position. The
IBR Approach suggests that a moderator set forth
the ground rules to promote respect for all team
members by:
Separating the people from the problems to
•
preserve relationships
Engaging in active listening
•
Attending to body language
•
Dissecting the con fl ict in objective terms
•
Exploring possible solutions together with a
•
“win-win” attitude
Monitoring the group response to change,
•
involving all members in the ongoing
resolution
Addressing individual responses to address
•
negativity and ensure advancement toward the
solution (Mind Tools 2011 )
Involving all the members in every step helps
each team member “own” the resolution to the
con fl ict. If negotiations fail, the team may have to
rely on an outside mediator to help facilitate com-
munication and balance (Townsley 2011 ) .
44.3.8 Team Values and Ethics
The impact of values and ethics on the team
process also must be considered. Values are
based on an individual’s principles and priori-
ties which are shaped by cultural mores and per-
sonal life experiences. Ethics are based on
society’s moral codes of conduct regarding right
and wrong individual or group behavior within
that society. When making decisions in the cran-
iofacial team environment, the line between val-
ues and ethics is often blurred, making it dif fi cult
to identify the levels of in fl uence of each of
these forces. These dilemmas frequently occur
in craniofacial centers when a team investigates
how outside interests are impacting overall care.
The team is obliged to consider a patient’s fam-
ily circumstances, fi nances, impact on family
employment, insurance regulations, hospital
requirements, and costs when recommending
patient care.
For example, the speech-language pathologist
on a craniofacial team recommends a secondary
palatal surgery to correct a velopharyngeal
incompetence (hypernasality), since his or her
core value is to normalize speech. The primary
goal for most surgeons on a craniofacial team is
for aesthetics and functionality, so the surgeon
also supports the surgical recommendation. The
team’s psychologist and social worker, however,
recommend delaying surgery for psychosocial
reasons such as excessive family stress and
patient developmental delays that preclude the
ability to perform the necessary postoperative
instructions. Each of the team members in this
situation comes to the table with a certain values
focus (i.e., surgery will improve the patient’s
functionality and quality of speech vs. surgery
will magnify the pressure on an already strained
family unit). The team’s ethical dilemma is to
weigh each of these tenets to determine the best
course of action for the patient’s and family’s
overall quality of life.

898
L.M. Fox and P.A. Stone
Another situation that occurs with multifac-
eted and long-term patient care is when a patient
does not have the resources to fund the care rec-
ommended by the team. After exhausting
resources to assist the family, the team must
struggle with how to provide the best possible
care within the limits of the fi nancial and/or social
situation even if the intervention is not the “gold
standard” or the most recently developed tech-
nique. This situation is often encountered when
more recently developed tests or techniques are
not yet covered by insurance companies.
A team may also be faced with a situation
where they must decide whether or not to repair
the palate of a child who is severely neurologi-
cally impaired. They must decide if the risk of
surgery and the demands on the patient during
the recovery process are warranted for a child
who may never functionally communicate. With
potentially con fl icting values among team mem-
bers (including the family), the team must evalu-
ate the ethical implications of the situation to
determine the most appropriate treatment plan.
Values/ethical dilemmas are challenging for
craniofacial teams because each member hails
from a unique professional and personal back-
ground. These diverse histories include speci fi c
ethical backgrounds leading to unique sets of val-
ues. Medical professionals, including those on
craniofacial teams, deal with a common set of
ethical issues such as truth telling, consent, capac-
ity, con fi dentiality, con fl ict of interest, resource
allocation, and research ethics on a daily basis
(McKneally and Singer 2001 ) . The team as a
whole must realize that individual values and
beliefs may not be congruent with those of other
team members or those of the patients and must
learn to discriminate between values and ethics.
Encouraging education and discussions involving
values and ethics enhances the ability of the team
to collaboratively deal with challenges which will
ultimately result in better team care of patients.
An example of an individual ethics training
exercise is the Self-Assessment Guide which
recommends that each team member actively
engage in an ethical dialogue by privately
answering a series of questions about a speci fi c
case (Doucet et al. 2001 ) . The goal of this exercise
is not to build character or instill virtue but to
enhance the team’s ability to effectively care for
patients in a humanistic and holistic manner.
The questions encourage the participant to iden-
tify his or her own position, compare individual
values with professional objectives and obliga-
tions, relate personal positions to personal val-
ues and decide how to communicate these values
to the team, weigh team members’ recommen-
dations and determine whether to alter those
recommendations, identify strategies for listen-
ing to and speaking with team members with
whom communication is dif fi cult, and differen-
tiate between a team member’s position and
personality (Doucet et al. 2001 ) .
Preferably, craniofacial teams should partici-
pate in medical ethics training conducted on a
multidisciplinary basis to avoid professional
compartmentalization and to create a better
understanding of the complementary roles of dif-
ferent professionals on the team (English 2004).
This shared educational experience helps estab-
lish mutual respect, commitment, and involve-
ment among craniofacial team members. Team
ethics training is best taught in the clinic setting
using case-based conferences that merge practi-
cal application with theoretical considerations.
All members of the team should be vested and
interested in an actual case to facilitate a useful
discussion. To create a meaningful and active
learning experience, each team member must
“take a stand” and defend his or her position
(McKneally and Singer 2001 ) .
Ethics discussions should also be part of the
standard team process. For health-care teams to
address ethical issues, each profession must
understand the ethical principles of their own dis-
cipline and acknowledge those of others. The
in fl uence of personal values must also be exam-
ined. Team members must acknowledge that each
has underlying values that are brought to the table
regardless of the fact that they are unspoken.
Only then can ethical deliberation be facilitated.
The team should develop a list of common cares
and concerns that represent the team values
(which should be evident in the team mission
statement). This list should be developed through
team discussion and mutual understanding.

899
44 Examining the Team Process: Developing and Sustaining Effective Craniofacial Team Care
In summary, the impact of values and ethics
on team care is a constantly evolving. Issues
involving ethics and values are inevitable in cran-
iofacial team care. Team ethics training leads to
improved
communication
and
connections
between team members and most importantly,
improved patient care.
44.4
Assessment and Improvement
of the Team Process
In the long term, teams are not measured by team
members’ interpersonal skills, communication
skills, or the clarity of team roles, but rather they
are evaluated and shaped by their performance
(Katzenbach and Smith 1994 ) . The ACPA has
declared that team members are responsible for
creating a plan of care that is “effective, ef fi cient,
and
obtainable”
(American
Cleft
Palate-
Craniofacial Association 1993 ) . The elements to
a successful team include: joining a team by
mutual choice, encouraging diversity, leading by
example versus by commands, reinforcing a
team’s identity through shared experiences,
encouraging creativity and reducing tension
through humor and play, and holding periodic
gatherings, meetings, and retreats to renew spirits
and reinforce values (Bolman and Deal 1992 ) . As
teams go about the delivery of care on a daily,
weekly, and/or monthly basis, they should be tak-
ing time to investigate their team functioning and
outcomes. Positive team performance requires
team members with collaboration skills which
must be learned through observation, direct
teaching, and “guided practice” (Cardona and
Miller 2000 ) . Research has shown that team
members bene fi t from direct teaching of team
process, effective communication, active listen-
ing, and con fl ict resolution (Farkas and Hill
2001 ) . The lack of systematic and continuous
evaluation of team collaboration may weaken
team outcomes. In order to improve team perfor-
mance and thus patient care, teams must continu-
ously develop and examine their processes.
Several avenues exist for examining team
process. Team performance may be assessed
internally through regularly scheduled meetings
focused on examining the team’s positive and
negative aspects. A different perspective can be
gained through feedback from an external con-
sultant who can delineate the team’s strengths
and weaknesses and assist the team in creating a
plan for improvement. Alternatively, teams can
use quantitative instruments such as question-
naires to assess team members’ perceptions of
current team functioning and generate ideas for
improvement. These questionnaires may be
generated by the team or one of the many pub-
lished instruments may be utilized. The ques-
tionnaire should be applied to each aspect of the
craniofacial team’s functioning including the
mission statement, team composition, team
visit, team meeting, team reports, patient fol-
low-up, research, marketing, and fi nances.
These instruments vary in their degree of focus
on one or more of the parameters of team per-
formance and in their length and time commit-
ment. Most of these measures help pinpoint
teams’ strengths and weaknesses, some assist in
the development of action responses to the areas
of weakness, and some assess the subsequent
impact of those responses.
Regardless of the type of team setting for
which any measure was created, there are univer-
sal parameters of team functioning that can be
measured by common instruments. These instru-
ments measure aspects of team structure, team
context, and degree of interdependence. However,
team productivity and the organization in which
the team functions often are not included (Brallier
and Tsukuda 2002 ) .
Most of these measures were developed for
speci fi c types of teams, some medical and some
business, but none were developed speci fi cally
for craniofacial teams. To meet this need, the
UNC Craniofacial Team Peer Review question-
naire was developed at the University of North
Carolina-Chapel Hill to measure and address
craniofacial team functioning (see Appendix ).
Since its inception in 2008, this survey has been
piloted in several craniofacial centers in the
United States and abroad in order to re fi ne the
process and increase its universality. Pilot teams
reported measurable positive outcomes from
this process.

900
L.M. Fox and P.A. Stone
Once a team assessment has been performed,
a summary of the information should be gath-
ered, analyzed, and shared honestly with the
team. Both the strengths and weaknesses of the
team should be discussed, and goals for
improvement should be developed. A follow-
up retreat is an excellent venue to address con-
cerns and develop a plan for remediation.
Retreats provide a distraction-free environment
in which the only concern is the task at hand.
During a retreat, a speci fi c agenda should be
created and distributed to maintain focus.
Participants should be coached to be “active
listeners” by restating, rephrasing, or summa-
rizing what the speaker has stated to ensure
complete
understanding.
“Brainstorming”
activities may be used to encourage ideas and
allow for gathering all members’ viewpoints.
These activities should be chosen based on the
group dynamics and the objectives of the
gathering.
As a result of the brainstorming session, the
team next explores options together to come to a
common decision and to make a list of possible
solutions. When a solution has been determined,
a group leader must then monitor the group
behavior in response to change. Some people are
threatened by change whereas others are willing
to take risks and are more apt to change (Wall and
Proyect 1998 ) . Leaders may use the plan- do-check-
act (PDCA) cycle to demonstrate to the team that
changes will be tried and evaluated for effective-
ness or fl aws prior to implementation. This pro-
cess may reduce anxiety related to change
(Arveson 1998).
During the evaluation phase of the proposed
changes, the team should be invited to give
feedback. The team leader should periodically
remind the group that change is a process and
not a single event. Once possible solutions are
identi fi ed, individual or small group responsi-
bilities with a time line for completion should
be assigned. Each member should be involved
in the resolution phase. It is important to verify
that team members are satis fi ed with the pro-
cess and are still working toward a solution
(Wall and Proyect 1998 ) . A monthly or quarterly
meeting may be warranted in order to carry out
teamwork training which may include lectures,
videos, role playing, and case-based training.
44.5
Summary and Conclusions
Craniofacial teams represent a complex, contin-
ually evolving challenge from their inception
that requires constant attention to both internal
and external processes. The importance of the
external team processes of patient satisfaction,
patient outcomes, research, funding, and the
team’s reputation has been clearly established.
These processes involve the output of the team.
Most teams are required to attend to these areas
because their home institutions (hospital, clinic,
university) demand some type of formal or
informal accounting of these areas as a measure
of the team’s productivity or to comply with
JCAHO standards.
In order to sustain ef fi cient and effective
teams, craniofacial teams must establish a strong
team foundation through attention to the inter-
nal team process to allow for complete team for-
mation, create a compelling team mission,
ensure the appropriate team composition, and
secure appropriate team leadership. The team
must continue to develop and progress in order
to maintain and improve upon team functioning.
This can be accomplished by direct focus on and
training in the elements of team process which
include decision making, identifying team roles,
developing collaboration skills, improving com-
munication skills, fostering mutual respect, cre-
ating team goals, managing con fl ict, and
evaluating values and ethics. These actions
require skills that must be constantly evaluated
and often require direct instruction for team
members.
Monitoring the team process and providing
team skills training promote improved team func-
tioning and, subsequently, improved patient out-
comes. It takes a team to deliver comprehensive
craniofacial care, but it also takes work to keep a
team functioning well.

901
44 Examining the Team Process: Developing and Sustaining Effective Craniofacial Team Care
44.6
Appendix
44.6.1 UNC Craniofacial Team Peer
Review and Self-Assessment
Please rate each question as : Never (1),
Occasionally (2), Sometimes (3), Most of the
Time (4), or Always (5)
Please include comments whenever possible
*Denotes questions adapted from ACPA
Standards of Approval of Cleft Palate and
Craniofacial Teams
** Denotes questions adapted from ACPA
Standards of Approval speci fi c to Craniofacial
Teams
44.6.1.1 Criterion One: Mission (Insert
Team’s Mission Statement)
Do you feel that this mission continues to describe
the purpose of our team?
Do you feel that this mission describes your
purpose as a member of the team?
Do you feel that this mission should be
updated?
Levels of Support
Do you feel supported in this mission by the
craniofacial center staff?
Do you feel supported in this mission by other
team members?
Do you feel supported in this mission by the
team director?
Do you feel supported in this mission by your
department?
Do you feel supported in this mission by our
institution?
44.6.1.2 Criterion Two:
Team Composition
*Does our team’s patient care coordinator
facilitate the operation of the team?
*Are the roles and responsibilities of the
coordinator clearly identi fi ed?
*Does our team include a speech-language
pathologist, a surgeon, and an orthodontist?
*Are all of our team members quali fi ed
by virtue of their education, experience, and
credentials to provide appropriate care?
*Have each of our team members maintained
current knowledge for best practice in their
fi elds?
*Does our team have access to professionals
in psychology, social work, psychiatry, audiol-
ogy, genetics, general and pediatric dentistry,
otolaryngology, and pediatrics/primary care?
**Does our team include a surgeon trained in
cranio-maxillofacial surgery?
**Does our team have access to a psycholo-
gist who does neurodevelopmental and cognitive
assessment?
**Does our team have access to a neurosur-
geon,
ophthalmologist,
radiologist,
and
geneticist?
44.6.1.3 Criterion Three: Patient Care
During Craniofacial Team Visit
Is our current system of referral to the craniofa-
cial team adequate (from within our institution
and outside referrals)?
Are the appropriate documents available to
you when you need them for the patient’s visit?
Do you feel our team receives all the neces-
sary background information on new patients?
*Does our coordinator ensure the provision of
coordinated care for patients and families/
caregivers?
*Does our coordinator assist patients and fam-
ilies/caregivers with understanding, coordinating,
and implementing treatment plans?
Is clinic fl ow ef fi cient?
Are we ensuring that all patients are seeing all
the specialists they need at each team visit?
*Are we providing team care and interven-
tions in a sequence that addresses the patient’s
overall developmental, medical, and psychologi-
cal needs?
Is the current way of scheduling patients to
specialists
on
team
days
ef fi cient
and
adequate?
Are you able to see your patients during your
assigned window of time on team mornings?
Are you affected by “bottlenecking” of patients
on team mornings?
Do you feel we schedule the appropriate num-
ber of patients on team mornings?

902
L.M. Fox and P.A. Stone
Is our physical setup for patient evaluation
optimal?
Should we consider having multiple special-
ists see patients at one time?
Are we ef fi cient with our direct patient care
time?
Do you feel you have enough time with each
patient on team visit mornings?
Do you feel there are redundancies across
specialties?
Do you feel we have adequate quality control
of our patient services?
Do we provide adequate continuity of care
between patient visits?
*Are we evaluating our patients at regular
intervals
and
in
keeping
with
team
recommendations?
*Are we encouraging patient and family/care-
giver participation in treatment decisions?
*Are we assisting patients/families/caregivers
with locating resources for fi nancial assistance
necessary to meet the needs of each patient?
*Does our team demonstrate sensitivity and
fl exibility of care to accommodate linguistic, cul-
tural, and ethnic diversity among patients and
their families/caregivers (including interpreters
for verbal and written communication)?
*Does our team treat patients and families/
caregivers in a nondiscriminatory manner?
* Is our team providing assessments for cogni-
tive development and learning disabilities at
appropriate time intervals?
Levels of Support for Our Team Visit Process
Do you feel supported on team clinic days by
the craniofacial center staff?
Do you feel supported on team clinic days by
other team members?
Do you feel supported on team clinic days
by the team director?
Do you feel supported on team clinic days by
your department?
Do you feel supported on team clinic days by
our institution?
Overall Evaluation of Our Team Visit Process
What is the best aspect of our team visit
process?
Which area of improvement do you feel is
most needed for our team visit process?
44.6.1.4 Criterion Four: Team Meeting
Do you feel our members show a strong commit-
ment to team care?
*Does our team meet regularly with at least
our core team members?
*Is our mechanism for achieving consensus
among team members effective?
Are you able to consistently attend team meet-
ing for the entire meeting?
Do you feel we have all the necessary special-
ists in attendance at team meetings for each
patient?
Do you feel that the way surgeries are pres-
ently assigned works well?
Are we ef fi cient in our team meeting
presentations?
Does our current team structure function well?
Do we have suf fi cient information at team
meeting regarding the patient’s history and fol-
low-through with past recommendations?
Is our team leader structure functioning well?
Does our team identify all of the relevant
medical, social, and psychological information
when de fi ning a problem?
Does our team spend suf fi cient time to explore
all the treatment options?
Does our team explore enough different
options when discussing treatment?
Does our team tend to propose the same solu-
tion for a majority of its patients?
Does our team spend suf fi cient time project-
ing the likely outcomes of treatment options?
Does our team assign the appropriate
priority to the various factors in fl uencing
decisions?
Does our team tend to bias treatment plans
based on the in fl uence of one individual or
function?
Levels of Support for Our Team Meeting
Do you feel supported for team meeting by
our center staff?
Do you feel supported for team meeting by
other team members?

903
44 Examining the Team Process: Developing and Sustaining Effective Craniofacial Team Care
Do you feel supported for team meeting by the
team director?
Do you feel supported for team meeting by
your department?
Do you feel supported for team meeting by the
school of dentistry?
Overall Evaluation of Our Team Meeting
What is the best aspect of our team meeting?
Which area of improvement do you feel is
most needed for our team meeting?
44.6.1.5 Criterion Five: Team Reports
*Does our team maintain central and shared
records?
Are we suf fi ciently integrating our individual
fi ndings into cohesive recommendations?
Do you feel our reports are readable to patients
and professionals?
Do
you
feel
we
should
prioritize
recommendations?
Do we communicate effectively with our
families?
Do you feel our reports are accurate?
*Do our reports include the recommended
treatment plan and alternatives, bene fi ts, and risk
factors?
**Are the results of neurodevelopmental and
cognitive assessments included in our team report?
**Are the participation of neurosurgery, oph-
thalmology, radiology, and genetics included in
our team report as appropriate?
Levels of Support for Our Team Report
Do you feel supported on team reports by the
craniofacial center staff?
Do you feel supported on team reports by
other team members?
Do you feel supported on team reports by the
team director?
Do you feel supported on team reports by your
department?
Do you feel supported on team reports by our
institution?
Overall Evaluation of Our Team Report
Process
What is the best aspect of our team report
process?
Which area of improvement do you feel is
most needed for our team report process?
44.6.1.6 Criterion Six: Patient Care and
Service Beyond the Team Visit
*Is our process for referring patients to outside
agencies adequate?
Do we adequately follow up with patients?
Do we have enough coordination of interde-
partmental appointments between team visits?
Do you feel patients are “falling between the
cracks” for follow-up appointments?
*Do we have an adequate system for obtain-
ing outside records of these follow-ups?
*Do we have an ef fi cient system for sending
information to outside agencies?
*Do we have an adequate system for obtain-
ing informed consent?
*Is our team’s process for documenting treat-
ment outcomes adequate?
*Is our team conducting periodic retrospective
or prospective studies to evaluate treatment
outcomes?
*Is our team’s quality management system
adequate?
Levels of Support for Patient Care Outside the
Team Visit
Do you feel supported on patient care that
occurs outside team visit by the craniofacial cen-
ter staff?
Do you feel supported on patient care that
occurs outside team visit by other team
members?
Do you feel supported on patient care that
occurs outside team visit by the team director?
Do you feel supported on patient care that
occurs outside team visit by your department?
Do you feel supported on patient care that
occurs outside team visit by our institution?
Overall Evaluation of Our Patient Care That
Occurs Outside Team Visits
What is the best aspect of our patient care
that occurs outside team visit?
Which area of improvement do you feel is
most needed for our patient care that occurs out-
side team visit?

904
L.M. Fox and P.A. Stone
44.6.1.7 Criterion Seven: Research
Do you feel that we are completing enough
research through our team?
Do you feel that all patients be in some clini-
cal trial?
Do you feel that we need a database for clini-
cal research?
Levels of Support for Research
Do you feel supported for research by the
craniofacial center staff?
Do you feel supported for research by other
team members?
Do you feel supported for research by the team
director?
Do you feel supported for research by your
department?
Do you feel supported for research by our
institution?
Overall Evaluation of Craniofacial Team
Research
What is the best aspect of our ongoing
research?
Which area of improvement do you feel is
most needed for our research?
44.6.1.8 Criterion Eight: Financial Health
Do you feel we are adequately funded?
Do we care for our unfunded patients well?
Do you feel we need to research other funding
avenues?
Do you feel we should be increasing fund-
raising or lobbying?
Levels of Support for Funding
Do you feel supported for funding by the cran-
iofacial center staff?
Do you feel supported for funding by other
team members?
Do you feel supported for funding by the team
director?
Do you feel supported for funding by your
department?
Do you feel supported for funding by our
institution?
Overall Evaluation of Funding
What is the best aspect of our current
funding?
Which area of improvement do you feel is
most needed for our current funding?
44.6.1.9 Criterion Nine: Preparing
for the Future: Public Relations/
Awareness/“Exposure”
Do you feel our team needs to increase its public
recognition?
Local?
Regional?
National?
International? Internet?
Levels of Support for Public Relations
Do you feel supported for public relations by
the craniofacial center staff?
Do you feel supported for public relations by
other team members?
Do you feel supported for public relations
by the team director?
Do you feel supported for public relations by
your department?
Do you feel supported for public relations by
our institution?
Overall Evaluation of Public Relations
What is the best aspect of our team’s public
relations?
Which area of improvement do you feel is
most needed for our team’s public relations?
References
Amason A, Thompson K, Hochwarter W et al (1995)
Con fl ict – an important dimension in successful
management teams. Organ Dyn 24:20–35
American Cleft Palate-Craniofacial Association (1993)
Parameters for the evaluation and treatment of patients
with cleft lip/palate or other craniofacial anomalies.
Cleft Palate Craniofac J 30(Suppl):1
American
Cleft
Palate-Craniofacial
Association
Commission on Approval of Teams (2010) Standards
for approval of cleft palate and craniofacial teams.

pdf . Accessed 11 June 2011
Arveson, P (1998) The Deming cycle.
ancedscorecard.org/TheDemingCycle/tabid/112/
Default.aspx. Accessed 20 Sept 2011
Baldwin D (2007) Some historical notes on interdisci-
plinary and interprofessional education and practice
in health care in the USA. J Interprof Care 21:
23–37
Benne K, Sheats P (1948) Functional roles of group mem-
bers. J Soc Issues 4:41–49
Berlin A (1969) A history of the American Cleft Palate
Association in the 1969 international congress on cleft
palate congress guide, Houston, 14–17 Apr 1969
Bokhour B (2006) Communication in interdisciplinary
team meetings: what are we talking about? J Interprof
Care 20:349–363

905
44 Examining the Team Process: Developing and Sustaining Effective Craniofacial Team Care
Bolman L, Deal T (1992) What makes a team work?
Organ Dyn 21:34–44
Brallier S, Tsukuda R (2002) Organizational and team
structure. In: Heinemann G, Zeiss A (eds) Team
performance in health care: assessment and develop-
ment. Kluwer Academic/Plenum, New York
Bridges D, Davidson R, Odegard PS et al (2011)
Interprofessional collaboration: three best practice
models of interprofessional education. Med Educ
Online. doi: 10.3402/meo.v16i0.6035
Cardona P, Miller P (2000) The art of creating and sustain-
ing winning teams. Technical Note of the International
Graduate School of Management University of Navarra.
Harvard Business School Publishing, Cambridge
Casey P, Lyle R, Bird T et al (2011) Effect of hospital-
based comprehensive care clinic on health costs for
Medicaid-insured medically complex children. Arch
Pediatr Adolesc Med 165:392–398
Cherkasky M (1949) The Monte fi ore hospital home care
program. Am J Public Health Nations Health 39:
163–166
Consensus Statement by Teachers of Medical Ethics and
law in UK Medical Schools (1998) Teaching medical
ethics and law within medical education: a model for
the UK core curriculum. J Med Ethics 24:188–192
Doucet H, Larouche J, Melchin K et al (2001) Ethical
deliberation in multiprofessional health care teams.
University of Ottawa Press, Canada
Eisenhardt K, Kahwajy J, Bourgeois L (1997) How man-
agement teams can have a good fi ght. Harv Bus Rev
75:77–85
Eldridge N, Revere A (1995) JCAHO national patient
safety goals for 2005.
TIPS/Docs/TIPS_JanFeb05.pdf . Accessed 11 Oct
2011
Eldridge N, Revere A (1996) JCAHO national patient
safety goals for 2006.
TIPS/Docs/TIPS_JanFeb06.pdf . Accessed 11 Oct 2011
Ellingson L (2002) Communication, collaboration, and
teamwork among health care professionals. Commun
Res Trends 21:3–21
Farkas M, Hill L (2001) A note on team process. President
and fellows of Harvard College, Boston
Goleman D (2000) Leadership that gets results. Harv Bus
Rev 78:78–90
Heinemann G, Zeiss A (eds) (2002) Team performance in
health care: assessment and development. Kluwer
Academic/Plenum, New York
Horwitz J (1970) Team practice and the specialist: an
introduction to interdisciplinary teamwork. Charles
Thomas, Spring fi eld
Joint Commission on Accreditation for Healthcare
Organizations (1996) 1996 Accreditation manual for
hospitals: standards, vol 1. JCAHO, Oakbrook Terrace
Katzenbach J, Smith D (1994) The wisdom of teams.
Harper Business, New York
Kuziemsky C, Borycki E, Purkis M et al (2009) An interdis-
ciplinary team communication framework and its appli-
cation to healthcare ‘e-teams’ systems design. BMC
Med Inform Decis Mak. doi: 10.1186/1472-6947-9-43
Lencioni P (2002) The fi ve dysfunctions of a team: a lead-
ership fable. Jossey-Bass, San Francisco
Maier N (1967) Assets and liabilities in group problem
solving: the need for an integrative function. Psychol
Rev 74:239–248
Margolis H, Fiorelli J (1984) An applied approach to
facilitating interdisciplinary teamwork. J Rehabil 50:
13–17
Marks M, Mathieu J, Zaccaro S (2001) A temporally
based framework and taxonomy of team process. Acad
Manage Rev 26:356–376
Mason R, Riski J (1982) The team approach to orofacial
management. Ann Plast Surg 8:71–78
McKneally M, Singer P (2001) Bioethics for clinicians:
teaching bioethics in the clinical setting. CMAJ 164:
1163–1167
Mind Tools.com (2011) Con fl ict resolution-resolving
con fl ict rationally and effectively.
tools.com/pages/article/newLDR_81.htm .
Accessed
19 Sept 2011
Nichols L, DeFriese A, Malone A (2002) Team process.
In: Heinemann G, Zeiss A (eds) Team performance in
health care: assessment and development. Kluwer
Academic/Plenum, New York
Phillips C (2011) Managing team con fl icts.
chumans.com/human-systems-resources/managing-
team-con fl ict.html . Accessed 20 Sept 2011
Revere A, Eldridge N (2007) JCAHO national patient
safety goals for 2007.
TIPS/Docs/TIPS_JanFeb07.pdf . Accessed 11 Oct 2011
Sidel V (2006) Social medicine at Monte fi ore: a personal
view. Soc Med 1:99–103
Singh H, Thomas E, Petersen L et al (2007) Medical
errors involving trainees: a study of closed malpractice
claims from 5 insurers. Arch Intern Med 167:
2030–2036
Strauss R (1999) The organization and delivery of cranio-
facial health services: the state of the art. Cleft Palate
Craniofac J 36:189–195
Strauss R, Broder H (1985) Interdisciplinary team care of
cleft lip and palate: social and psychological aspects.
Clin Plast Surg 12:543–551
Strauss R, Ellis J (1996) Comprehensive team manage-
ment. In: Turvey T, Vig K, Fonseca R (eds) Facial
clefts and craniosynostosis principles and manage-
ment. W B Saunders, Philadelphia
Strauss R, van Aalst J, Fox L et al (2011) Flood, disaster,
and turmoil: social issues in cleft and craniofacial care
and crisis relief. Cleft Palate Craniofac J 48:750–756
Suter E, Arndt J, Arthur N et al (2009) Role understanding
and effective communication as core competencies for
collaborative practice. J Interprof Care 23:41–51
Tannen D (1995) The power of talk: who gets heard and
why. Harv Bus Rev 73:138–148
Thomas K, Kilmann R (1974) Thomas-Kilmann con fl ict
mode instrument pro fi le and interpretive report.
Consulting Psychologists Press, Palo Alto
Townsley C (2011) Resolving con fl ict in work teams.

cles/con fl icts.htm . Accessed 20 Sept 2011

906
L.M. Fox and P.A. Stone
Tuckman BW (1965) Developmental sequence in small
groups. Psychol Bull 63:384–399
Tuckman B, Jensen M (1977) Stages of small-group
development
revisited.
Group
Organ
Manag
2:419–427
University of North Carolina Craniofacial Team Website
(2011)
cial/mission.cfm . Accessed 22 Sept 2011
Vargervik K, Oberoi S, Hoffman W (2009) Team care for
the patient with cleft: UCSF protocols and outcomes.
J Craniof Surg 20:1668–1671
Wall D, Proyect M (1998) Critical pathway development
guide: a team-oriented approach for developing criti-
cal pathways. Precept Press, Chicago

907
S. Berkowitz (ed.), Cleft Lip and Palate,
DOI 10.1007/978-3-642-30770-6_45, © Springer-Verlag Berlin Heidelberg 2013
45
45.1
Introduction
A cleft of the lip and/or the palate and its treatment
can pose challenges in many domains of life,
including several areas of psychological and
social functioning. To date, research explor-
ing the psychosocial rami fi cations of clefting
has produced complex and contrasting results.
A recent literature review by Stock and Rumsey
( 2011 ) highlighted some emerging areas of con-
sensus, alongside a number of methodological
challenges for researchers in the fi eld. Using a
lifespan perspective, this chapter summarises
current knowledge and outlines the potential of
these fi ndings to inform appropriate psychosocial
support and interventions for patients with cleft
and their families.
45.2
What Are the Challenges?
45.2.1 Infancy (0–3 Years)
In countries with well-developed healthcare
resources, the majority of clefts are now diagnosed
antenatally, using 2D or 3D scanning techniques.
The availability and accuracy of these scans can
vary, however, and some clefts are still not diag-
nosed until after birth. A cleft in the palate is par-
ticularly dif fi cult to detect and, if a thorough
postnatal examination is not carried out, may remain
undiagnosed for some time (Slator et al. 2009 ) .
For most parents, the ‘diagnostic event’ is an
emotionally demanding experience, which can
invoke a simultaneous mix of shock, despair, guilt
and grief (Vanz and Ribeiro 2011 ) . Non-specialist
healthcare professionals (HPs) are usually the fi rst
point of contact for parents, but often lack the
speci fi c knowledge and skills needed to support the
family appropriately (Knapke et al. 2010 ) . The
most common concerns expressed by parents are:
‘what caused the cleft – why has this happened to
us?’ and ‘what are the future prospects for our child
– will she/he be alright?’ (see Williams et al. 2012 ) .
Parents may also be concerned about the possibil-
ity of having another child with a cleft (Stock and
Rumsey, in preparation). The answers to these
questions are complex and inconclusive, and par-
ents can be frustrated by the inability of HPs to pro-
vide them de fi nitive answers, either to these
questions or in relation to the type and length of the
treatment that will be required (Nelson et al. 2012 ) .
The quality of information received by parents, and
Living with a Cleft: Psychological
Challenges, Support
and Intervention
Nichola Rumsey and Nicola Marie Stock
N. Rumsey (*)
Department of Psychology , Centre for Appearance
Research, University of the West of England ,
Frenchay Campus, Coldharbour Lane ,
Bristol BS16 1QY , UK
e-mail: nichola.rumsey@uwe.ac.uk
N. M. Stock
Department of Psychology, Faculty of Health and Life
Sciences , Centre for Appearance Research,
University of the West of England ,
Frenchay Campus, Coldharbour Lane ,
Bristol BS16 1QY , UK

908
N. Rumsey and N.M. Stock
the manner in which this information is delivered,
appears to have a signi fi cant impact on the distress
experienced and the ability of parents to cope
(Chuacharoen et al. 2009 ; Vanz and Ribeiro 2011 ) .
Although a high level of overall satisfaction with
early healthcare is frequently reported (Nelson
et al. 2012 ) , many parents would like more oppor-
tunities to talk to HPs in order to have their anxiet-
ies allayed (Hodgkinson et al. 2005 ) .
Issues associated with feeding are also partic-
ularly concerning for parents. As infants with
cleft can have dif fi culty attaching and sucking
(Reid et al. 2006 ) , attempts to breastfeed can be
frustrating. Mothers have reported that feeding
dif fi culties can affect their feelings of compe-
tency and interfere with the intimate mother-
infant bond during the fi rst few days after birth
(Stock et al. 2011 ) .
The experience of these fi rst crucial weeks can
impact signi fi cantly on longer term parental well-
being. For example, Despars and colleagues
( 2011 ) reported that mothers of infants with a
cleft frequently have less secure representations
of their relationship with their child, have higher
maternal emotional involvement and have more
posttraumatic stress symptoms than controls.
However, it is important to view these fi ndings in
context. The factors likely to mediate the psycho-
social impact on the family and the affected child
in the fi rst few years include socioeconomic
resources (Waylen and Stewart-Brown 2009 ) ,
family attachment history, parental coping styles
and strategies (Hodgkinson et al. 2005 ) , mental
well-being (Pope et al. 2005 ) , beliefs about cau-
sation and responsibility (Nelson et al. 2009 ) ,
child temperament and child co-morbidity
(Hodgkinson et al. 2005 ) . Parents have also
reported encountering negative reactions to their
child’s cleft from friends, family members, HPs
and members of the public. This can result in
considerable distress, leading parents to conceal
the cleft in different ways and, in some cases, to
become socially withdrawn (Nelson et al. 2012 ) .
The way in which the family perceives the cleft
and the emphasis the family places on appear-
ance may also be important factors in their own
and their child’s adjustment (Bellew 2012 ) .
Much of the research relating to the early
years has focused on mother-infant attachment,
re fl ecting an underlying assumption that this pro-
cess would be negatively affected by the presence
of a cleft lip and/or feeding dif fi culties. In reality,
recent studies have found no overall differences
in the rates of attachment security between moth-
ers and infants with cleft compared with unaf-
fected controls (Collett and Speltz 2007 ) .
However, infants with a cleft have been found to
have higher rates of secure attachment early on,
with those with the most objectively severe
impairments in facial attractiveness demonstrat-
ing the highest rates. Collett and Speltz ( 2006 )
concluded that infants with a cleft may be per-
ceived by their mothers to be particularly vulner-
able, heightening maternal responsiveness and
resulting in stronger attachment characteristics.
Other factors, including the quality of the care
provided, experiences of feeding and parental
well-being, have also been shown to be contribu-
tory factors to the development of attachment
security (see Cassidy and Shaver 2010 ) . Less sat-
isfactory mother-infant relationships have been
associated with inadequate nutritional intake
(Hodgkinson et al. 2005 ) , potential de fi cits in
language development (Wermke et al. 2011 ) and
poor cognitive functioning at 18 months (Murray
et al. 2008 ) .
45.2.2 Childhood (4–11 Years)
Early childhood is a key period in terms of social
and educational experiences. It is often the fi rst
phase of life in which a child will be expected to
integrate with their peers in the world beyond the
family environment. Having a visible difference
may represent an immediate challenge, as other
children may be curious, may be unsure of how
to behave or may make unhelpful comments
(Rumsey 2002 ) . Similarly, children with hearing
or speech complications may be more dif fi cult to
understand, provoking a higher risk of rejection
by their peers. How the child experiences and
copes with these challenges is likely to impact on
the development of their self-worth and personal
sense of agency (Hearst et al. 2008 ) .
A considerable body of research has identi fi ed
children with a cleft to be more socially inhibited
than their peers. Reports of gaze avoidance (Slifer

909
45 Living with a Cleft: Psychological Challenges, Support and Intervention
et al. 2006 ) , social anxiety (Murray et al. 2010 ) ,
withdrawn-depressed behaviour (Pinquart and
Shen 2010 ) and internalising problems (Pope and
Snyder 2005 ) are common amongst children with
a cleft. It may be that while many of these chil-
dren have adequate conversational skills, they are
less responsive and less assertive than their peers
(Frederickson et al. 2006 ) . Teasing and bullying,
if present, is likely to peak around the age of
7 years. Increased levels of perceived peer harass-
ment are associated with increased dissatisfac-
tion with appearance (Billaud Feragen and Borge
2010 ) and patterns of learned helplessness (Hearst
et al. 2008 ) .
Although children with a cleft score similarly
to their peers in terms of overall quality of life
(Sagheri et al. 2009 ; Wehby and Cassell 2010 ) ,
children with palatal involvement have been
reported to have lower health status and lower
health-related quality of life (Damiano et al.
2006 ) . This may be related to increased problems
with speech (Damiano et al. 2006 ) and social
relationships (Kramer et al. 2009 ) in this group.
The possibility of cognitive delay in children
born with a cleft is currently a topic of debate. The
majority of research to date has found cognitive
development to be within the normal range (Collett
and Speltz 2007 ) ; however, Richman and col-
leagues ( 2005 ) noted an elevated incidence of
learning disabilities amongst children with cleft,
identifying speci fi c weaknesses in relation to
visual memory and reading ability. Verbal intelli-
gence may be related to poor maternal sensitivity
during infancy (Hentges et al. 2011 ) , while low
academic achievement may be attributed to hear-
ing and communication dif fi culties (Hearst et al.
2008 ) . Due to a lack of knowledge and skill, teach-
ers may interpret these dif fi culties as behavioural
problems in the child (Stock et al. 2011 ) .
45.2.3 Adolescence (12–17 Years)
It is understood that adolescence can be a particu-
larly dif fi cult time for young people with a cleft,
as differences in appearance and/or speech may
affect their ability to ‘blend in’ and be perceived
as ‘normal’, a central facet of well-being in ado-
lescence (Liossi 2003 ) .
Overall, research has found little evidence of
impaired psychosocial adjustment in adolescents
with a cleft (e.g. Berger and Dalton 2009 ; Locker
et al. 2005 ) . However, a number of studies have
identi fi ed variables which may moderate adjust-
ment for this age group, all of which relate to
social experiences, speech dif fi culties and dissat-
isfaction with appearance (e.g. Berger and Dalton
2011; Bilboul et al. 2006 ) . Perceived teasing and
bullying appear to be particularly in fl uential,
impacting on self-con fi dence (Noor and Musa
2007 ) , subjective ratings of appearance and emo-
tional distress (Billaud Feragen et al. 2010 ) . The
extent to which the young person feels in control
of their treatment may also affect psychological
adjustment. Young people may have unrealistic
expectations of aesthetic change following sur-
gery (Cadogan and Bennun 2011 ) or may dis-
agree with parents or HPs about the point at which
to end surgical or orthodontic treatment (Collett
and Speltz 2007 ) . In addition, various changes to
facial aesthetics during these years may impact
on adjustment (Cadogan and Bennun 2011 ) .
45.2.4 Adults (18+ Years)
The transition into adulthood usually signi fi es the
end of the care pathway, and the majority of
patients lose touch with the services that have
been a regular part of their lives until this point.
On average, young adults with a cleft report
lower quality of life than their peers, except in the
domain of family relationships (Collett and Speltz
2007 ) . It is possible that delays in the emancipa-
tion process from the family unit may contribute
to observations that adults with cleft appear to be
less likely to marry, or marry later in life (Danino
et al. 2005 ) , and are more likely to be childless or
wait longer to raise a family (Yttri et al. 2011 ) .
There is also the additional concern that future
generations may be affected due to the genetic
element involved in cleft (Williams et al. 2012).
A recent retrospective population-based study by
Persson ( 2012 ) was also strongly suggestive of
negative long-term consequences of a cleft on
physical development and educational achieve-
ment. Most males in resource-rich countries have
a preference for being tall and muscular

910
N. Rumsey and N.M. Stock
(Tiggemann et al. 2008 ) . If men are dissatis fi ed
with their bodies through being unable to match
up to current stereotypes related to height and
muscularity, there are associated psychological
risks, including lower self-esteem, social anxiety
and depression. De fi cits in educational achieve-
ments were also apparent in all groups. Lower
overall grade point averages and, more speci fi cally,
lower scores in maths and languages were most
marked for those with cleft palate only (CPO).
Many adults report being dissatis fi ed with sur-
gical outcomes and express a desire for further
corrective treatment, which is often related to
poorer health-related quality of life outcomes and
long-term well-being (Oosterkamp et al. 2007 ;
Sinko et al. 2005 ) . Research has also found large
discrepancies in ratings of aesthetic satisfaction
between the patients themselves, HPs and unin-
volved judges (e.g. Foo et al. 2011 ) .
45.3
Individual Differences
in Adjustment
The literature has demonstrated that a cleft and
its treatment present a number of challenges.
While some experience a range of transitory or
longer term dif fi culties, others thrive. Differences
in adjustment are not well explained by the objec-
tive severity or the visibility of a cleft (Appearance
Research Collaboration 2009 ) . Understanding
the multifaceted nature of adjustment and identi-
fying those who may be vulnerable are key to the
provision of effective psychological intervention.
If we are to move forwards, a number of missing
links in our understanding of cleft need to be
addressed, and a number of key methodological
concerns need to be resolved.
45.4
Missing Links in Understanding
Psychological Adjustment
The majority of research to date has focussed on
children and teenagers. This is understandable, as
these populations are more easily accessed by
researchers and clinicians during regular treatment
visits. Our knowledge of longer term outcomes is
more limited as research involving people who are
geographically dispersed and no longer receiving
regular treatment is challenging. There may be psy-
chological and social challenges that have not been
recognised or provided for by cleft teams. In addi-
tion, very little research has been conducted with
older adults with a cleft. Although research has
shown the importance of physical appearance to
decline with age, body dissatisfaction has been
found to be stable across much of the adult lifespan
(Tiggemann 2004 ) . The additional impact of a cleft
on this phenomenon and its wider consequences
are not yet known.
The surprisingly high rate of impaired cogni-
tive functioning in individuals with a cleft and the
emergence of evidence of negative long-term
outcomes have driven researchers to examine the
intricacies of the interrelationships between the
development of the face and brain – speci fi cally,
the implications of these relationships for the
brain structure and function for those born with a
cleft. Underlying differences in brain structure
may mediate de fi cits in reading ability and lan-
guage development, as well as aspects of behav-
iour and social functioning. Findings from the
Nopoulos group based in Iowa are suggestive of
anomalies in brain development which are asso-
ciated with physical, behavioural, cognitive and
academic outcomes in children and adults born
with a cleft (e.g. Richman et al. 2011 ) . These and
other studies suggest that additional input and
support may be necessary to achieve optimal
educational outcomes and that particular atten-
tion should be paid to signs of developmental
delay in those with CPO (Persson 2012 ) .
A number of ‘hard-to-reach’ groups have thus
far been severely under-represented in cleft
research. There is a heavy bias towards the experi-
ences of mothers of children with a cleft, with few
attempts to involve fathers in research. The impor-
tance of the role of the father in normative devel-
opmental processes (Lamb 2010 ) and in overall
familial adjustment should not be overlooked.
Researchers should also document the effects on
siblings, grandparents and the family unit as a
whole. More attention should be devoted to under-
standing the family’s needs at different stages of
the affected child’s development (Nelson et al.