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THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
Written by Cynthia Murphy
Craniofacial-Vegan Awareness Advocate
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
Craniofacial anomalies also known as “CFAs” consist
of a physical birth defect resulting in abnormal
structures and underdevelopment affecting the
bones, muscles, and tissues of the face and skull.
Many CFAs go overlooked due to the extensive lack
of knowledge. Children and young adults with CFAs
are at high risk for bullying, social rejection, and
psychological distress, all of which are linked to
detrimental health and developmental outcomes
(Seehra et al., 2011).
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
Competency is a challenging issue in the fact that
there are very few cases involving CFAs, and they
are often ignored for more common problems
which can cause a scarcity of expertise.
The general lack of knowledge cause problematic
barriers for medical professionals in diagnosing but
even more so efficiently and adequately treating
CFAs (Bemmels et al., 2013).
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
Cynthia Murphy
Craniofacial-Vegan
Awareness Advocate
The Psychological Impact of Children
born with Craniofacial Abnormalities
PROBLEM STATEMENT
Children and young adults born with CFAs often
have concerns and social anxieties resultant from
their physical appearance which ultimately can have
a negative effect on their quality of life. CFAs are
problematic and often have multiple areas of
concern that necessitate comprehensive care and
treatment from a collaborative medical team
beginning early childhood.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
Technology and latest advances afford us with a
variety of surgical options for patients with CFAs in
obtaining reconstructive plastic surgery which is a
complicated process in itself (Geirdal et al., 2015).
Having a child with a physical birth defect often
affects the entire family, especially the parents.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
Cynthia Murphy
Craniofacial-Vegan Awareness Advocate
The Psychological Impact of Children
born with Craniofacial Abnormalities
Parents are often not prepared in raising a child
born with a CFAs. Therefore they often encounter
unique challenges and in that they passionately
seek to enhance their child’s life in any way
possible, and in some cases inadvertently making
poor decisions in selecting surgical care for their
child.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
Some of the challenges we face today in
dealing with CFAs is that there is a
prevalent lack of education and awareness
in the initial diagnosis and treatment
stages of such disorders (Mathiesen et al.,
2012).
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
PURPOSE OF THE STUDY
This qualitative study seeks in identifying
and understanding the psychological and
societal effects individuals with CFAs may
experience.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
The purpose of this study is to consider statistical
data and information with regards to the number
of individuals with CFAs who suffer from
psychological disorders resultant from either the
lack of surgical care or consequences of surgical
errors, along with a proposal for education and
treatment.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
If children and young adults with CFAs can be
afforded with the best methods of treatment
and surgical care, the chances of psychological
disorders would greatly decline. However, many
cases of CFAs can worsen after procedures such
as reconstructive plastic surgery because of
surgical errors in which other surgeons may
attempt to try and repair despite uncertainties.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
Cynthia Murphy
Craniofacial-Vegan
Awareness Advocate
Sometimes the
botched surgical
circumstances are
so severe that it is
nearly impossible to
seek to reconstruct
the damage, but yet
it is still done over
and over again.
(Bemmels et al., 2013).
The Psychological Impact of Children
born with Craniofacial Abnormalities
The focus of this study is to develop an understanding
as to the necessity for reconstructive plastic surgery for
those born with CFAs and if any psychological
repercussions exist without.
Furthermore, this study will focus on the consequences
of surgical errors resulting in psychosocial outcomes
and establish potential resolutions in efforts to
eradicate or reduce the unintended consequences of
botched reconstructive plastic surgery (Jenkinson et al.,
2015).
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
RESEARCH QUESTIONS
Five core questions need to be addressed and detailed
relating to the psychological impact of CFAs, the following
research questions were explored:
1. Most often the parents decide as to whether or not they
will elect their child born with a CFA. When considering
what is in “the child’s best interest” what does this mean
in this context and from whose perspective?
2. What type of psychosocial impact exists in regards to
those born with CFAs?
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
RESEARCH QUESTIONS
3. How can we better educate medical professionals,
parents, and society at large in efforts to properly
treat children and adults born with CFAs?
4. How does the prevalence of consequences resultant
of surgical errors affect individuals and families with
CFAs?
5. What are some resolutions in avoiding consequences
of surgical mistakes?
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
HYPOTHESIS
It is hypothesized that there is a psychosocial impact
with respects to physical appearance for individuals
with CFAs.
Additionally, it is hypothesized that individuals born
with CFAs, in comparison to a general population
sample, will have higher frequencies of depression,
social anxieties, lower social competence - all of which
can result in an adverse impact on their quality of life
(Jenkinson et al., 2015).
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
THEORETICAL PERSPECTIVE
There is considerable literature regarding the correlation
between psychosocial adjustment and stigmatization as to
CFAs, which has been primarily from a theoretical perspective
– which is supported by qualitative research through the
utilization of the following methods:
• Cross-sectional survey assessments;
• Telephonic interviews;
• Previous studies accommodated for many demographical factors;
• Document review;
• Data analysis; and
• Individual observation of children and adults with CFA's ages 12 to 61 years
of age (Masnari et al., 2013).
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
LITERATURE REVIEW
According to research, physical birth defects affect
approximately one in thirty-three children born in the
U.S., and approximately one in four adults suffer from a
psychological illness. While the rates of mental illness, in
general, are high, they are also high for those born with
CFAs.
Additionally, research has shown that CFAs are amongst
the most common birth defects and have significant
practical, aesthetic, and societal repercussions.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
While there are few cases where individuals sustain
a craniofacial birth defect later in life due to injuries
or disease, most cases of CFAs are often incurred at
birth. Pursuant to research children born with CFAs
may also suffer from a variety of medical issues
involving their vision, hearing, or speech; which can
be resultant of their CFA (Singh et al., 2015).
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
Research has established that CFAs can lead to
various psychosocial development issues entailing of
considerable social anxieties and avoidance attesting
to interfere with the quality of life. Additionally,
various studies have established that the adult
population of those born with CFAs are at risk of
developing psychosocial problems attributable to
concerns relating to their facial appearance.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
There is substantial and compelling literature on craniofacial
abnormalities and the psychological and societal reactions and
judgments. Such literature identifies a variety of subjective
challenges and obstacles individuals with CFAs experience
(Jenkinson et al., 2015).
Researchers have taken into consideration that the degree of
the psychological effects of craniofacial abnormalities may not
have a correlation as to the level of its genetic impact. However,
studies have discovered a connection between CFAs and the
increased reports and observations of behavioral issues at home
and learning difficulties at school.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
There are social stigmas and perceptions among the general
population who have no ties to CFAs. It is widely assumed that
children and young adults born with CFAs are also mentally
challenged, especially if they require advanced hearing
technology or speech therapy.
While this has proven to be true in particular circumstances
of CFAs, it is most certainly not true in all cases. In fact,
many children born with CFAs often have average
intelligence (Masnari et al., 2013).
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
Cynthia Murphy
Craniofacial-Vegan Awareness Advocate
TREACHER COLLINS SYNDROME
COCHLEAR BAHA
SURGERY
The Psychological Impact of Children
born with Craniofacial Abnormalities
RESEARCH DESIGN AND METHODS
This is a qualitative study on the subject of psychosocial
problems corresponding with adjustment as well as the
necessity and benefits of reconstructive plastic surgery for
individuals with CFAs. This study was conducted online
and via telephone through various craniofacial
communities, and twenty-five subjects were interviewed
and observed for six weeks.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
The data and information collected entails of a
combination of previous studies accommodated for many
demographical factors, interviews, survey, data analysis,
and document review. Such information was obtained
through the utilization of self-report surveys, in the
format of written questionnaires and formally organized
interviews in efforts to collect data information as to the
backgrounds, behaviors, perspectives, and philosophies
of a small to medium-sized group participants with CFAs.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
A grounded theory approach was utilized in efforts to
enable the data collected to develop into new literature
that may not have been considered before. This method
utilizes foundation and presents the scope for
imagination and creativity with the data in efforts to
guide the study. This qualitative study focuses on
elucidating personal experiences of children and adults
with CFAs explaining their experiences and feelings in
their own words.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
Additionally, individual interviews were also
conducted with medical professionals and parents of
children with CFAs. This study utilized such methods
in efforts to measure the psychosocial problems
corresponding with adjustment as well as to develop
an understanding as to the necessity for
reconstructive plastic surgery and if any psychological
repercussions exist without (Mathiesen et al., 2012).
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
PARTICIPANTS
The qualitative research design utilized a partially
structured interview process with children and adults
with CFA's ages 12 to 61 years old, but also included
parents and medical professionals. Interviews were
conducted via telephone and online chat in a one-on-
one setting and were recorded for more enhanced
analysis purposes. Every interview conducted lasted
approximately thirty minutes to one hour.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
All of these interviews have been included
in the data analysis; however, personal
information will remain confidential, and
there will be no direct quotations included
from these interviews.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
INDEPENDENT AND DEPENDENT VARIABLES
Evaluation measures involve the Quality of Life
Questionnaire (TAPQOL), Perceived Stigmatization
Questionnaire, Child Behavior Checklist (CBCL), and
health-related quality of life (HRQOL). The
independent variables in this study will include
individual child characteristics which are a direct
result of the CFAs and variables which represent the
psychosocial development.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
Such CFA variables consist of; hearing capability, speech
quality, and physical attractiveness. Child psychosocial
variables consist of; social skills, self-concept,
externalizing behavioral issues, and, internalizing
behavioral issues. While children with CFAs have not been
identified to suffer from low self-perspective or
psychological illness, however, it has been determined
that they do exhibit patterns of increased societal reserve
and self-consciousness concerning their physical
appearance (Masnari et al., 2013).
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
DATA ANALYSIS
In this qualitative study, descriptive measurements were
used in efforts to obtain an understanding of the data
gathered from the surveys and interviews. Evaluation
questionnaire tools and individual interviews were
conducted and analyzed in efforts to determine if
psychosocial adjustment problems were existent.
Additionally, the cross-sectional study measured
psychosocial adjustment and the HRQOL in children with
CFAs and identified prospective conjectures of adjustment.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
Findings have effects for the design of a potential
correlational research study in efforts to examine the
consequences of prolonged surgical intervention,
establish qualitative analyses – which aim to understand
parental perceptions concerning reconstructive
craniofacial surgery for their children with CFAs, and
studies of the manner in which surgical decisions are
made and negotiated for, more specifically for children
with CFAs and the reasoning on why (Mathiesen et al.,
2012).
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
The data collected will be concluded along with the
results of the completed questionnaires and interviews –
all of which will be sent to a third-party contractor for a
second opinion evaluation in efforts to avoid results
based on research bias. The researchers will be
accountable for implementing the results rendered by the
third-party contractor in efforts to create a detailed
analysis of findings and a retrospective chart assessment
to examine the comprehensive set of dynamics as to the
psychosocial impact of CFAs.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
Results will be used towards future research studies,
employing a correlational research study in efforts to
obtain a comprehensive view of the psychosocial impact
through the lifetime at each stage of development,
affording opportunity for the results to be more
applicable for clinical practice purposes. Additionally,
such results from this study can serve as a substance to
further inform and guide future research on the topic of
the psychosocial impact of CFAs (Jenkinson et al., 2015).
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
ANTICIPATED RESULTS
As a consequence, it is anticipated that individuals with
CFAs are at risk for psychosocial difficulties with untreated
craniofacial abnormalities due to the lack of medically
necessary surgical care or by the reasoning of distress
resultant from surgical related errors and complications.
Should this anticipation be correct, individuals with CFAs
left untreated, commonly results in an adverse impact on;
physical appearance, hearing, speech, as well as physical
and psychological wellbeing.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
For example, a female subject born with a CFA and
in her late 20s, was interviewed, and she reported
that her condition up until recently was left
untreated, and she struggles tremendously in her
speech capabilities, stating that she regularly has
problems in simply interacting with others,
especially young males (Bemmels et al., 2013).
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
CONCLUSION
It has been determined that children with CFAs often have
been regarded as retaining usual self-perspective. However,
they often experience psychosocial problems corresponding
with adjustment.
Psychosocial adjustment problems are identified by the
development of psychological and/or behavioral symptoms
such as; withdrawal, societal anxieties, depression, physical
aggression, employment issues, academic difficulties, social
conflicts or behavioral issues at home and school (Knight et
al., 2015).
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
There have been a number of psychological risk
factors in CFAs identified that could possibly damage
a child's psychological adjustment, most often
attributable to parental overprotectiveness or guilt,
consequently stigmatizing societal reactions to CFAs
and particular neuropsychological circumstances
notwithstanding that many children born with CFAs
seemingly retain common psychosocial
development.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
The risk of developing learning impairments and
disruptive behavioral disorders in this particular
population group is greater than anticipated which
implies that children born with CFAs would
considerably benefit from psychological evaluation
and treatment (Masnari et al., 2013).
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
It is of great significance that parents retain awareness as
to the effect of CFAs and how they can have a negative
effect on their child’s quality of life. Parents who lack
education and awareness of CFAs often have
communication issues from and with medical
professionals. Therefore many parents lack the ability to
provide their child with the best medical care possible.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
Professional and parent education
training is essential for parents to have a
better understanding and position in
caring and handling for their child born
with a CFA (Mathiesen et al., 2012).
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
CONCLUSION
The results of this qualitative study have produced more
questions than answers; There is an essential need for
further empirical research and studies to be conducted
on this subject matter for a clearer understanding and
better resolution strategies. Such studies will allow us to
understand the risks faced by those born with CFAs, early
intervention and surgical treatment in efforts to lessen if
not eradicate the possibility of psychosocial difficulties.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
Being born with a craniofacial abnormality is a
challenge and source of terrible emotional anguish
that most cannot even remotely begin to identify
with. People are a part of our everyday lives, going
in and going out, and that will never change. We
identify with others through social interaction,
personal connection.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
Our physical attributes are without a doubt our
identities and what we all first take notice of when
first meeting someone. We currently live in a day of
age where physical appearance has become such a
necessity of everyday life especially for many
individuals who may lack education and/or
understanding as to the harmful effects of societal
judgment and bullying (Rose et al., 2013).
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
Regardless of the subjective feelings on this topic,
reality is that many individuals with CFAs identify
with others through the visualization of their faces.
CFA subjects have often stated that they were forced
in coming to terms with their physical disability and
that they are inevitably and precisely what they see
in the mirror, which is what others on the outside
see too.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
The Psychological Impact of Children
born with Craniofacial Abnormalities
Thus, many individuals born with CFAs take drastic
measures in hiding from society and social isolation
through the means of numerous reconstructive surgeries
in efforts to repair their facial disfigurement.
The number of individuals born with and who have
experienced suffering from the traumatizing terrors of
outside judgment, bullying and self-judgement are very
high (Romero-Maroto et al., 2015).
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
Cynthia Murphy
Craniofacial-Vegan Awareness
Advocate
The Psychological Impact of Children
born with Craniofacial Abnormalities
Without proper treatment consisting of craniofacial surgical
intervention and psychological treatment, it is likely
something that will follow them for the rest of their natural
lives.
While surgical intervention is often the most desirable
approach to treating individuals with CFAs, however, it is
essential for parents to make wise and medically necessary
surgical decisions during childhood years, leaving them the
choice to elect in making surgical decisions based on their
own merits once adulthood is reached (Mathiesen et al.,
2012).
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
TREACHER COLLINS SYNDROME
Psychological Impact of Craniofacial Anomalies:
An Annotated Bibliography
Singh, V. P., & Moss, T. P. (December 01, 2015). Psychological
impact of visible differences in patients with congenital
craniofacial anomalies. Progress in Orthodontics, 16, 1, 1-9.
The authors, researchers at the Department of Orthodontics
and Dentofacial Orthopedics and Department of Health
Psychology, conducted a study measuring the social and
psychological effects of facial and dental appearance in
patients suffering from craniofacial abnormalities in contrast
to the general population. Patients born with craniofacial
abnormalities often have appearance-related concerns and
are at risk for psychosocial difficulties.
Psychological Impact of Craniofacial Anomalies:
An Annotated Bibliography
Singh, V. P., & Moss, T. P. (December 01, 2015). Psychological
impact of visible differences in patients with congenital
craniofacial anomalies. Progress in Orthodontics, 16, 1, 1-9.
Facial appearance is considered as a significant need for
healthy psychosocial development. There is a lack of
qualitative research in the craniofacial field as it is rather
contradictory and suffers various gaps for scientific reasons.
These consist of contradiction in psychoanalysis scales and
constructs used and the lack of legitimacy and reliability in
many of the measurements.
Psychological Impact of Craniofacial Anomalies:
An Annotated Bibliography
Singh, V. P., & Moss, T. P. (December 01, 2015). Psychological
impact of visible differences in patients with congenital
craniofacial anomalies. Progress in Orthodontics, 16, 1, 1-9.
Researchers emphasized the need to move from a ‘medical
model’ towards a ‘social science model.' Craniofacial
abnormalities are facial disfigurements incurred at birth and
can range in severity, however; research has established that
craniofacial conditions can lead to various psychosocial
development issues entailing of considerable social anxieties
and avoidance - all of which can result in an adverse impact
on their quality of life.
Psychological Impact of Craniofacial Anomalies:
An Annotated Bibliography
Singh, V. P., & Moss, T. P. (December 01, 2015). Psychological
impact of visible differences in patients with congenital
craniofacial anomalies. Progress in Orthodontics, 16, 1, 1-9.
There are a variety of potential issues in
the patient group of craniofacial
abnormalities which are further
complicated by an increased occurrence of
malocclusion and dental anomalies.
Psychological Impact of Craniofacial Anomalies:
An Annotated Bibliography
Singh, V. P., & Moss, T. P. (December 01, 2015). Psychological
impact of visible differences in patients with congenital
craniofacial anomalies. Progress in Orthodontics, 16, 1, 1-9.
The best treatment method is multifaceted, which involves
team collaboration and support from various specialties.
Throughout nearly all segments of treatment, dental services
are necessary from an early age to late adult life. It is
imperative for patients suffering from craniofacial
abnormalities to have decent facial and dental appearance as
it can have a constructive role on their self-esteem and
psychological behavior.
Psychological Impact of Craniofacial Anomalies:
An Annotated Bibliography
Romero-Maroto, M., Santos-Puerta, N., González, O. M. J., &
Peñacoba-Puente, C. (August 01, 2015). The Impact of Dental
Appearance and Anxiety on Self-Esteem in Adult Orthodontic
Patients. Orthodontics & Craniofacial Research, 18, 3, 143-
155.
The authors, researchers from the Department of Orthodontics,
Department of Psychology and Rey Juan Carlos University from
Alcorcón, Madrid, Spain, conducted a study in efforts to evaluate the
connection concerning different measurements as to the effects of
dental appearance and self-esteem in adult patients undergoing
orthodontic treatment.
Psychological Impact of Craniofacial Anomalies:
An Annotated Bibliography
Romero-Maroto, M., Santos-Puerta, N., González, O. M. J., &
Peñacoba-Puente, C. (August 01, 2015). The Impact of Dental
Appearance and Anxiety on Self-Esteem in Adult Orthodontic
Patients. Orthodontics & Craniofacial Research, 18, 3, 143-155.
The study had particularly emphasized the potential intervening role
of anxiety and depression by conducting measurements as to the
effect of dental appearance utilizing the Psychosocial Impact of
Dental Aesthetics Questionnaire (PIDAQ). The PIDAQ provides
exceptionally useful statistical information on aspects of oral health
and oral health-related quality of life (OHRQoL). OHRQoL is a
multifaceted construct that measures and documents the practical
and psychosocial results of oral disorders.
Psychological Impact of Craniofacial Anomalies:
An Annotated Bibliography
Romero-Maroto, M., Santos-Puerta, N., González, O. M. J., &
Peñacoba-Puente, C. (August 01, 2015). The Impact of Dental
Appearance and Anxiety on Self-Esteem in Adult Orthodontic
Patients. Orthodontics & Craniofacial Research, 18, 3, 143-155.
A total of 85 adult patients were individually assigned to one of
the two groups (experimental and control). Both groups
established that self-esteem correlated with a number of
negative outcomes with all measurements of dental appearance
outcomes, not including the positive dental self-esteem
measurement, which showed statistically significant positive
correlations.
Psychological Impact of Craniofacial Anomalies:
An Annotated Bibliography
Romero-Maroto, M., Santos-Puerta, N., González, O. M. J., &
Peñacoba-Puente, C. (August 01, 2015). The Impact of Dental
Appearance and Anxiety on Self-Esteem in Adult Orthodontic
Patients. Orthodontics & Craniofacial Research, 18, 3, 143-155.
Anxiety was positively correlated with patients' psychological
impact, social influence, and appearance concerns while no
statistically significant correlations were shown among dental self-
esteem. However, in patients undergoing orthodontic treatment,
anxiety was found to play an intervening role amongst dental
impact measurements and self-esteem, whereas the control group
found anxiety to play an intervening role concerning the
psychological impact and self-esteem.
Psychological Impact of Craniofacial Anomalies:
An Annotated Bibliography
Romero-Maroto, M., Santos-Puerta, N., González, O. M. J., &
Peñacoba-Puente, C. (August 01, 2015). The Impact of Dental
Appearance and Anxiety on Self-Esteem in Adult Orthodontic
Patients. Orthodontics & Craniofacial Research, 18, 3, 143-155.
Anxiety serves as an essential role in the outcomes of
perceived dental treatment effect on self-esteem in adult
patients’ undergoing orthodontic treatment. Such results
have proved as significant practical results for the objective of
bio-psycho-social intervention programs that study cognitive
and affective factors as a vital segment of orthodontic
treatment in adults.
Psychological Impact of Craniofacial Anomalies:
An Annotated Bibliography
Jenkinson, E., Williamson, H., Byron-Daniel, J., & Moss, T. P.
(October 16, 2015). Systematic Review: Psychosocial Interventions
for Children and Young People with Visible Differences Resulting
from Appearance Altering Conditions, Injury, or Treatment Effects.
Journal of Pediatric Psychology, 40, 10, 1017-1033.
The authors, researchers from the Centre of Appearance Research,
University of the West of England, conducted a study in efforts to
assess the efficiencies of psychosocial interventions for children
and adolescents with discernible facial differences with respects to
improving self-confidence, social functioning, psychological health,
and behavioral results analytically.
Psychological Impact of Craniofacial Anomalies:
An Annotated Bibliography
Jenkinson, E., Williamson, H., Byron-Daniel, J., & Moss, T. P. (October 16,
2015). Systematic Review: Psychosocial Interventions for Children and
Young People with Visible Differences Resulting from Appearance
Altering Conditions, Injury, or Treatment Effects. Journal of Pediatric
Psychology, 40, 10, 1017-1033.
Studies involved multiple appropriate databases and electronic sources,
meeting pre-specified appraisal and eligibility criteria, evaluated using
methods that aim to minimize bias.
The studies conducted utilized the Preferred Reporting Items for
Systematic Reviews and Meta-Analyses checklist (PRISMA), a validated,
evidence-based applied reporting and conducted instrument utilized as
a basis for reporting systematic assessments of research, and in
particular assessments of interventions.
Psychological Impact of Craniofacial Anomalies:
An Annotated Bibliography
Jenkinson, E., Williamson, H., Byron-Daniel, J., & Moss, T. P.
(October 16, 2015). Systematic Review: Psychosocial
Interventions for Children and Young People with Visible
Differences Resulting from Appearance Altering Conditions,
Injury, or Treatment Effects. Journal of Pediatric Psychology,
40, 10, 1017-1033.
Empirical research studies assessed the effectiveness of a
residential social camps programs, social interaction skills
training (SIST), behavioral therapy (BT), cognitive behavioral
therapy (CBT), and physician-based assessment and
counseling for exercise.
Psychological Impact of Craniofacial Anomalies:
An Annotated Bibliography
Jenkinson, E., Williamson, H., Byron-Daniel, J., & Moss, T. P.
(October 16, 2015). Systematic Review: Psychosocial Interventions
for Children and Young People with Visible Differences Resulting
from Appearance Altering Conditions, Injury, or Treatment Effects.
Journal of Pediatric Psychology, 40, 10, 1017-1033.
According to the American Camp Association residential camps
help promote social interaction and self-efficacy among young
adults who have special needs. SIST studies are conducted in
efforts to assess the degree of social phobia and social anxiety as a
result of disfigurement. BT and CBT are both scientifically
established forms of psychotherapy that are effectual for various
disorders and problems.
Psychological Impact of Craniofacial Anomalies:
An Annotated Bibliography
Jenkinson, E., Williamson, H., Byron-Daniel, J., & Moss, T. P.
(October 16, 2015). Systematic Review: Psychosocial Interventions
for Children and Young People with Visible Differences Resulting
from Appearance Altering Conditions, Injury, or Treatment Effects.
Journal of Pediatric Psychology, 40, 10, 1017-1033.
The reports in the studies retained a high and unclear risk of bias.
Studies on residential social camps programs studies and
physician-based assessment and counseling for exercise showed
very little to no effect post-intervention with respects to self-
confidence, social functioning, and psychological health. The five
research studies assessing the effectiveness of SIST, CBT, and BT
provided very limited support as to their level of efficiency.
Psychological Impact of Craniofacial Anomalies:
An Annotated Bibliography
Jenkinson, E., Williamson, H., Byron-Daniel, J., & Moss, T. P.
(October 16, 2015). Systematic Review: Psychosocial Interventions
for Children and Young People with Visible Differences Resulting
from Appearance Altering Conditions, Injury, or Treatment Effects.
Journal of Pediatric Psychology, 40, 10, 1017-1033.
In closing, the study is inconclusive and requires further research
before strong conclusions can be established. Supporting and
adequate evidence is necessary as any erroneous or misleading
contextual factors may lead to incorrect conclusions. Further
meticulous research utilizing proper conclusive measures in efforts
to assess the efficiency of interventions for children and young
adults with discernible facial differences is required.
Psychological Impact of Craniofacial Anomalies:
An Annotated Bibliography
Bemmels, H., Biesecker, B., Schmidt, J. L., Krokosky, A., Guidotti, R., &
Sutton, E. J. (January 01, 2013). Psychological and Social Factors in
Undergoing Reconstructive Surgery Among Individuals with Craniofacial
Conditions: An Exploratory Study. The Cleft Palate-Craniofacial Journal:
Official Publication of the American Cleft Palate-Craniofacial Association,
50, 2, 158-67.
The authors, researchers from the Department of Educational Psychology,
University of Minnesota, Minneapolis, Minnesota; conducted a study on
reconstructive plastic surgery and its’ effectiveness in improving
psychological health for children suffering from craniofacial anomalies.
Very few studies have investigated the difficulties of reconstructive plastic
surgery beyond the physical uncertainties and risks consisting of: negative
treatment outcomes, brain damage, infection, and sometimes even
death.
Psychological Impact of Craniofacial Anomalies:
An Annotated Bibliography
Bemmels, H., Biesecker, B., Schmidt, J. L., Krokosky, A., Guidotti, R.,
& Sutton, E. J. (January 01, 2013). Psychological and Social Factors
in Undergoing Reconstructive Surgery Among Individuals with
Craniofacial Conditions: An Exploratory Study. The Cleft Palate-
Craniofacial Journal: Official Publication of the American Cleft
Palate-Craniofacial Association, 50, 2, 158-67.
The objective of this subjective study is to recognize the social and
psychological inferences that such interventions can have for
patients suffering from craniofacial anomalies. The study involved
a total of 38 individuals with various craniofacial disorders
between the ages of 12 to 61.
Psychological Impact of Craniofacial Anomalies:
An Annotated Bibliography
Bemmels, H., Biesecker, B., Schmidt, J. L., Krokosky, A., Guidotti, R., &
Sutton, E. J. (January 01, 2013). Psychological and Social Factors in
Undergoing Reconstructive Surgery Among Individuals with Craniofacial
Conditions: An Exploratory Study. The Cleft Palate-Craniofacial Journal:
Official Publication of the American Cleft Palate-Craniofacial
Association, 50, 2, 158-67.
All patient participants were selectively considered before recruitment
in this study. The variety of patient participant viewpoints and
experiences reveal the complication of reconstructive plastic surgery.
Craniofacial surgeon teams involved in patient care play a vital role in
advising patients as well as their parents on the subject of current
treatment options and alternatives.
Psychological Impact of Craniofacial Anomalies:
An Annotated Bibliography
Bemmels, H., Biesecker, B., Schmidt, J. L., Krokosky, A., Guidotti,
R., & Sutton, E. J. (January 01, 2013). Psychological and Social
Factors in Undergoing Reconstructive Surgery Among Individuals
with Craniofacial Conditions: An Exploratory Study. The Cleft
Palate-Craniofacial Journal: Official Publication of the American
Cleft Palate-Craniofacial Association, 50, 2, 158-67.
The social and psychological repercussions of reconstructive
plastic surgery should be precisely communicated in efforts to
help families consider the uncertainties and risks as to the
benefits of reconstructive plastic surgery in an informative and
expressive manner.
REFERENCES
Knight, J., Cassell, C. H., Meyer, R. E., & Strauss, R. P. (May 01,
2015). Academic Outcomes of Children With Isolated Orofacial
Clefts Compared With Children Without a Major Birth Defect. The
Cleft Palate-Craniofacial Journal, 52, 3, 259-268.
Geirdal, A. Ø., Saltnes, S. S., Storhaug, K., Åsten, P., Nordgarden,
H., & Jensen, J. L. (April 01, 2015). Living with orofacial conditions:
psychological distress and quality of life in adults affected with
Treacher Collins syndrome, cherubism, or oligodontia/ectodermal
dysplasia—a comparative study. Quality of Life Research : an
International Journal of Quality of Life Aspects of Treatment, Care
and Rehabilitation - Official Journal of the International Society of
Quality of Life Research, 24, 4, 927-935.
REFERENCES
Raquel Gonçalves Vieira-Andrade, & Saul Martins de Paiva and Leandro
Silva Marques. (2015). Impact of Malocclusions on Quality of Life from
Childhood to Adulthood. InT
Seehra, J., Newton, J. T., & DiBiase, A. T. (January 01, 2011). Bullying in
school children - its relationship to dental appearance and psychosocial
implications: an update for GDPs. British Dental Journal, 210, 9, 411-5.
Masnari, O., Schiestl, C., Rössler, J., Gütlein, S. K., Neuhaus, K., Weibel, L.,
Meuli, M., ... Landolt, M. A. (January 01, 2013). Stigmatization predicts
psychological adjustment and quality of life in children and adolescents
with a facial difference. Journal of Pediatric Psychology, 38, 2, 162-72.
Mathiesen, A. M., Frost, C. J., Dent, K. M., & Feldkamp, M. L. (December
01, 2012). Parental Needs among Children with Birth Defects: Defining a
Parent-to-Parent Support Network. Journal of Genetic Counseling, 21, 6,
862-872.
THE PSYCHOLOGICAL IMPACT OF CHILDREN
BORN WITH CRANIOFACIAL ABNORMALITIES
Thank you for reading this
report!
Connect with us online at:
assuaged.com or via Facebook!
TREACHER COLLINS SYNDROME

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The Psychological Impact of Children born with Craniofacial Abnormalities

  • 1. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES Written by Cynthia Murphy Craniofacial-Vegan Awareness Advocate TREACHER COLLINS SYNDROME
  • 2. The Psychological Impact of Children born with Craniofacial Abnormalities Craniofacial anomalies also known as “CFAs” consist of a physical birth defect resulting in abnormal structures and underdevelopment affecting the bones, muscles, and tissues of the face and skull. Many CFAs go overlooked due to the extensive lack of knowledge. Children and young adults with CFAs are at high risk for bullying, social rejection, and psychological distress, all of which are linked to detrimental health and developmental outcomes (Seehra et al., 2011). THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 3. The Psychological Impact of Children born with Craniofacial Abnormalities Competency is a challenging issue in the fact that there are very few cases involving CFAs, and they are often ignored for more common problems which can cause a scarcity of expertise. The general lack of knowledge cause problematic barriers for medical professionals in diagnosing but even more so efficiently and adequately treating CFAs (Bemmels et al., 2013). THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 5. The Psychological Impact of Children born with Craniofacial Abnormalities PROBLEM STATEMENT Children and young adults born with CFAs often have concerns and social anxieties resultant from their physical appearance which ultimately can have a negative effect on their quality of life. CFAs are problematic and often have multiple areas of concern that necessitate comprehensive care and treatment from a collaborative medical team beginning early childhood. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 6. The Psychological Impact of Children born with Craniofacial Abnormalities Technology and latest advances afford us with a variety of surgical options for patients with CFAs in obtaining reconstructive plastic surgery which is a complicated process in itself (Geirdal et al., 2015). Having a child with a physical birth defect often affects the entire family, especially the parents. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 8. The Psychological Impact of Children born with Craniofacial Abnormalities Parents are often not prepared in raising a child born with a CFAs. Therefore they often encounter unique challenges and in that they passionately seek to enhance their child’s life in any way possible, and in some cases inadvertently making poor decisions in selecting surgical care for their child. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 9. The Psychological Impact of Children born with Craniofacial Abnormalities Some of the challenges we face today in dealing with CFAs is that there is a prevalent lack of education and awareness in the initial diagnosis and treatment stages of such disorders (Mathiesen et al., 2012). THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 10. The Psychological Impact of Children born with Craniofacial Abnormalities PURPOSE OF THE STUDY This qualitative study seeks in identifying and understanding the psychological and societal effects individuals with CFAs may experience. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 11. The Psychological Impact of Children born with Craniofacial Abnormalities The purpose of this study is to consider statistical data and information with regards to the number of individuals with CFAs who suffer from psychological disorders resultant from either the lack of surgical care or consequences of surgical errors, along with a proposal for education and treatment. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 12. The Psychological Impact of Children born with Craniofacial Abnormalities If children and young adults with CFAs can be afforded with the best methods of treatment and surgical care, the chances of psychological disorders would greatly decline. However, many cases of CFAs can worsen after procedures such as reconstructive plastic surgery because of surgical errors in which other surgeons may attempt to try and repair despite uncertainties. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 13. Cynthia Murphy Craniofacial-Vegan Awareness Advocate Sometimes the botched surgical circumstances are so severe that it is nearly impossible to seek to reconstruct the damage, but yet it is still done over and over again. (Bemmels et al., 2013).
  • 14. The Psychological Impact of Children born with Craniofacial Abnormalities The focus of this study is to develop an understanding as to the necessity for reconstructive plastic surgery for those born with CFAs and if any psychological repercussions exist without. Furthermore, this study will focus on the consequences of surgical errors resulting in psychosocial outcomes and establish potential resolutions in efforts to eradicate or reduce the unintended consequences of botched reconstructive plastic surgery (Jenkinson et al., 2015). THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 15. The Psychological Impact of Children born with Craniofacial Abnormalities RESEARCH QUESTIONS Five core questions need to be addressed and detailed relating to the psychological impact of CFAs, the following research questions were explored: 1. Most often the parents decide as to whether or not they will elect their child born with a CFA. When considering what is in “the child’s best interest” what does this mean in this context and from whose perspective? 2. What type of psychosocial impact exists in regards to those born with CFAs? THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 16. The Psychological Impact of Children born with Craniofacial Abnormalities RESEARCH QUESTIONS 3. How can we better educate medical professionals, parents, and society at large in efforts to properly treat children and adults born with CFAs? 4. How does the prevalence of consequences resultant of surgical errors affect individuals and families with CFAs? 5. What are some resolutions in avoiding consequences of surgical mistakes? THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 17. The Psychological Impact of Children born with Craniofacial Abnormalities HYPOTHESIS It is hypothesized that there is a psychosocial impact with respects to physical appearance for individuals with CFAs. Additionally, it is hypothesized that individuals born with CFAs, in comparison to a general population sample, will have higher frequencies of depression, social anxieties, lower social competence - all of which can result in an adverse impact on their quality of life (Jenkinson et al., 2015). THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 18. The Psychological Impact of Children born with Craniofacial Abnormalities THEORETICAL PERSPECTIVE There is considerable literature regarding the correlation between psychosocial adjustment and stigmatization as to CFAs, which has been primarily from a theoretical perspective – which is supported by qualitative research through the utilization of the following methods: • Cross-sectional survey assessments; • Telephonic interviews; • Previous studies accommodated for many demographical factors; • Document review; • Data analysis; and • Individual observation of children and adults with CFA's ages 12 to 61 years of age (Masnari et al., 2013). THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 19. The Psychological Impact of Children born with Craniofacial Abnormalities LITERATURE REVIEW According to research, physical birth defects affect approximately one in thirty-three children born in the U.S., and approximately one in four adults suffer from a psychological illness. While the rates of mental illness, in general, are high, they are also high for those born with CFAs. Additionally, research has shown that CFAs are amongst the most common birth defects and have significant practical, aesthetic, and societal repercussions. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 20. The Psychological Impact of Children born with Craniofacial Abnormalities While there are few cases where individuals sustain a craniofacial birth defect later in life due to injuries or disease, most cases of CFAs are often incurred at birth. Pursuant to research children born with CFAs may also suffer from a variety of medical issues involving their vision, hearing, or speech; which can be resultant of their CFA (Singh et al., 2015). THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 21. The Psychological Impact of Children born with Craniofacial Abnormalities Research has established that CFAs can lead to various psychosocial development issues entailing of considerable social anxieties and avoidance attesting to interfere with the quality of life. Additionally, various studies have established that the adult population of those born with CFAs are at risk of developing psychosocial problems attributable to concerns relating to their facial appearance. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 22. The Psychological Impact of Children born with Craniofacial Abnormalities There is substantial and compelling literature on craniofacial abnormalities and the psychological and societal reactions and judgments. Such literature identifies a variety of subjective challenges and obstacles individuals with CFAs experience (Jenkinson et al., 2015). Researchers have taken into consideration that the degree of the psychological effects of craniofacial abnormalities may not have a correlation as to the level of its genetic impact. However, studies have discovered a connection between CFAs and the increased reports and observations of behavioral issues at home and learning difficulties at school. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 23. The Psychological Impact of Children born with Craniofacial Abnormalities There are social stigmas and perceptions among the general population who have no ties to CFAs. It is widely assumed that children and young adults born with CFAs are also mentally challenged, especially if they require advanced hearing technology or speech therapy. While this has proven to be true in particular circumstances of CFAs, it is most certainly not true in all cases. In fact, many children born with CFAs often have average intelligence (Masnari et al., 2013). THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 24. Cynthia Murphy Craniofacial-Vegan Awareness Advocate TREACHER COLLINS SYNDROME COCHLEAR BAHA SURGERY
  • 25. The Psychological Impact of Children born with Craniofacial Abnormalities RESEARCH DESIGN AND METHODS This is a qualitative study on the subject of psychosocial problems corresponding with adjustment as well as the necessity and benefits of reconstructive plastic surgery for individuals with CFAs. This study was conducted online and via telephone through various craniofacial communities, and twenty-five subjects were interviewed and observed for six weeks. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 26. The Psychological Impact of Children born with Craniofacial Abnormalities The data and information collected entails of a combination of previous studies accommodated for many demographical factors, interviews, survey, data analysis, and document review. Such information was obtained through the utilization of self-report surveys, in the format of written questionnaires and formally organized interviews in efforts to collect data information as to the backgrounds, behaviors, perspectives, and philosophies of a small to medium-sized group participants with CFAs. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 27. The Psychological Impact of Children born with Craniofacial Abnormalities A grounded theory approach was utilized in efforts to enable the data collected to develop into new literature that may not have been considered before. This method utilizes foundation and presents the scope for imagination and creativity with the data in efforts to guide the study. This qualitative study focuses on elucidating personal experiences of children and adults with CFAs explaining their experiences and feelings in their own words. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 28. The Psychological Impact of Children born with Craniofacial Abnormalities Additionally, individual interviews were also conducted with medical professionals and parents of children with CFAs. This study utilized such methods in efforts to measure the psychosocial problems corresponding with adjustment as well as to develop an understanding as to the necessity for reconstructive plastic surgery and if any psychological repercussions exist without (Mathiesen et al., 2012). THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 29. The Psychological Impact of Children born with Craniofacial Abnormalities PARTICIPANTS The qualitative research design utilized a partially structured interview process with children and adults with CFA's ages 12 to 61 years old, but also included parents and medical professionals. Interviews were conducted via telephone and online chat in a one-on- one setting and were recorded for more enhanced analysis purposes. Every interview conducted lasted approximately thirty minutes to one hour. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 30. The Psychological Impact of Children born with Craniofacial Abnormalities All of these interviews have been included in the data analysis; however, personal information will remain confidential, and there will be no direct quotations included from these interviews. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 31. The Psychological Impact of Children born with Craniofacial Abnormalities INDEPENDENT AND DEPENDENT VARIABLES Evaluation measures involve the Quality of Life Questionnaire (TAPQOL), Perceived Stigmatization Questionnaire, Child Behavior Checklist (CBCL), and health-related quality of life (HRQOL). The independent variables in this study will include individual child characteristics which are a direct result of the CFAs and variables which represent the psychosocial development. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 32. The Psychological Impact of Children born with Craniofacial Abnormalities Such CFA variables consist of; hearing capability, speech quality, and physical attractiveness. Child psychosocial variables consist of; social skills, self-concept, externalizing behavioral issues, and, internalizing behavioral issues. While children with CFAs have not been identified to suffer from low self-perspective or psychological illness, however, it has been determined that they do exhibit patterns of increased societal reserve and self-consciousness concerning their physical appearance (Masnari et al., 2013). THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 33. The Psychological Impact of Children born with Craniofacial Abnormalities DATA ANALYSIS In this qualitative study, descriptive measurements were used in efforts to obtain an understanding of the data gathered from the surveys and interviews. Evaluation questionnaire tools and individual interviews were conducted and analyzed in efforts to determine if psychosocial adjustment problems were existent. Additionally, the cross-sectional study measured psychosocial adjustment and the HRQOL in children with CFAs and identified prospective conjectures of adjustment. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 34. The Psychological Impact of Children born with Craniofacial Abnormalities Findings have effects for the design of a potential correlational research study in efforts to examine the consequences of prolonged surgical intervention, establish qualitative analyses – which aim to understand parental perceptions concerning reconstructive craniofacial surgery for their children with CFAs, and studies of the manner in which surgical decisions are made and negotiated for, more specifically for children with CFAs and the reasoning on why (Mathiesen et al., 2012). THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 35. The Psychological Impact of Children born with Craniofacial Abnormalities The data collected will be concluded along with the results of the completed questionnaires and interviews – all of which will be sent to a third-party contractor for a second opinion evaluation in efforts to avoid results based on research bias. The researchers will be accountable for implementing the results rendered by the third-party contractor in efforts to create a detailed analysis of findings and a retrospective chart assessment to examine the comprehensive set of dynamics as to the psychosocial impact of CFAs. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 36. The Psychological Impact of Children born with Craniofacial Abnormalities Results will be used towards future research studies, employing a correlational research study in efforts to obtain a comprehensive view of the psychosocial impact through the lifetime at each stage of development, affording opportunity for the results to be more applicable for clinical practice purposes. Additionally, such results from this study can serve as a substance to further inform and guide future research on the topic of the psychosocial impact of CFAs (Jenkinson et al., 2015). THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 37. The Psychological Impact of Children born with Craniofacial Abnormalities ANTICIPATED RESULTS As a consequence, it is anticipated that individuals with CFAs are at risk for psychosocial difficulties with untreated craniofacial abnormalities due to the lack of medically necessary surgical care or by the reasoning of distress resultant from surgical related errors and complications. Should this anticipation be correct, individuals with CFAs left untreated, commonly results in an adverse impact on; physical appearance, hearing, speech, as well as physical and psychological wellbeing. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 38. The Psychological Impact of Children born with Craniofacial Abnormalities For example, a female subject born with a CFA and in her late 20s, was interviewed, and she reported that her condition up until recently was left untreated, and she struggles tremendously in her speech capabilities, stating that she regularly has problems in simply interacting with others, especially young males (Bemmels et al., 2013). THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 39. The Psychological Impact of Children born with Craniofacial Abnormalities CONCLUSION It has been determined that children with CFAs often have been regarded as retaining usual self-perspective. However, they often experience psychosocial problems corresponding with adjustment. Psychosocial adjustment problems are identified by the development of psychological and/or behavioral symptoms such as; withdrawal, societal anxieties, depression, physical aggression, employment issues, academic difficulties, social conflicts or behavioral issues at home and school (Knight et al., 2015). THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 40. The Psychological Impact of Children born with Craniofacial Abnormalities There have been a number of psychological risk factors in CFAs identified that could possibly damage a child's psychological adjustment, most often attributable to parental overprotectiveness or guilt, consequently stigmatizing societal reactions to CFAs and particular neuropsychological circumstances notwithstanding that many children born with CFAs seemingly retain common psychosocial development. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 41. The Psychological Impact of Children born with Craniofacial Abnormalities The risk of developing learning impairments and disruptive behavioral disorders in this particular population group is greater than anticipated which implies that children born with CFAs would considerably benefit from psychological evaluation and treatment (Masnari et al., 2013). THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 42. The Psychological Impact of Children born with Craniofacial Abnormalities It is of great significance that parents retain awareness as to the effect of CFAs and how they can have a negative effect on their child’s quality of life. Parents who lack education and awareness of CFAs often have communication issues from and with medical professionals. Therefore many parents lack the ability to provide their child with the best medical care possible. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 43. The Psychological Impact of Children born with Craniofacial Abnormalities Professional and parent education training is essential for parents to have a better understanding and position in caring and handling for their child born with a CFA (Mathiesen et al., 2012). THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 44. The Psychological Impact of Children born with Craniofacial Abnormalities CONCLUSION The results of this qualitative study have produced more questions than answers; There is an essential need for further empirical research and studies to be conducted on this subject matter for a clearer understanding and better resolution strategies. Such studies will allow us to understand the risks faced by those born with CFAs, early intervention and surgical treatment in efforts to lessen if not eradicate the possibility of psychosocial difficulties. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 45. The Psychological Impact of Children born with Craniofacial Abnormalities Being born with a craniofacial abnormality is a challenge and source of terrible emotional anguish that most cannot even remotely begin to identify with. People are a part of our everyday lives, going in and going out, and that will never change. We identify with others through social interaction, personal connection. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 46. The Psychological Impact of Children born with Craniofacial Abnormalities Our physical attributes are without a doubt our identities and what we all first take notice of when first meeting someone. We currently live in a day of age where physical appearance has become such a necessity of everyday life especially for many individuals who may lack education and/or understanding as to the harmful effects of societal judgment and bullying (Rose et al., 2013). THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 47. The Psychological Impact of Children born with Craniofacial Abnormalities Regardless of the subjective feelings on this topic, reality is that many individuals with CFAs identify with others through the visualization of their faces. CFA subjects have often stated that they were forced in coming to terms with their physical disability and that they are inevitably and precisely what they see in the mirror, which is what others on the outside see too. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 48. The Psychological Impact of Children born with Craniofacial Abnormalities Thus, many individuals born with CFAs take drastic measures in hiding from society and social isolation through the means of numerous reconstructive surgeries in efforts to repair their facial disfigurement. The number of individuals born with and who have experienced suffering from the traumatizing terrors of outside judgment, bullying and self-judgement are very high (Romero-Maroto et al., 2015). THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 50. The Psychological Impact of Children born with Craniofacial Abnormalities Without proper treatment consisting of craniofacial surgical intervention and psychological treatment, it is likely something that will follow them for the rest of their natural lives. While surgical intervention is often the most desirable approach to treating individuals with CFAs, however, it is essential for parents to make wise and medically necessary surgical decisions during childhood years, leaving them the choice to elect in making surgical decisions based on their own merits once adulthood is reached (Mathiesen et al., 2012). THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES TREACHER COLLINS SYNDROME
  • 51. Psychological Impact of Craniofacial Anomalies: An Annotated Bibliography Singh, V. P., & Moss, T. P. (December 01, 2015). Psychological impact of visible differences in patients with congenital craniofacial anomalies. Progress in Orthodontics, 16, 1, 1-9. The authors, researchers at the Department of Orthodontics and Dentofacial Orthopedics and Department of Health Psychology, conducted a study measuring the social and psychological effects of facial and dental appearance in patients suffering from craniofacial abnormalities in contrast to the general population. Patients born with craniofacial abnormalities often have appearance-related concerns and are at risk for psychosocial difficulties.
  • 52. Psychological Impact of Craniofacial Anomalies: An Annotated Bibliography Singh, V. P., & Moss, T. P. (December 01, 2015). Psychological impact of visible differences in patients with congenital craniofacial anomalies. Progress in Orthodontics, 16, 1, 1-9. Facial appearance is considered as a significant need for healthy psychosocial development. There is a lack of qualitative research in the craniofacial field as it is rather contradictory and suffers various gaps for scientific reasons. These consist of contradiction in psychoanalysis scales and constructs used and the lack of legitimacy and reliability in many of the measurements.
  • 53. Psychological Impact of Craniofacial Anomalies: An Annotated Bibliography Singh, V. P., & Moss, T. P. (December 01, 2015). Psychological impact of visible differences in patients with congenital craniofacial anomalies. Progress in Orthodontics, 16, 1, 1-9. Researchers emphasized the need to move from a ‘medical model’ towards a ‘social science model.' Craniofacial abnormalities are facial disfigurements incurred at birth and can range in severity, however; research has established that craniofacial conditions can lead to various psychosocial development issues entailing of considerable social anxieties and avoidance - all of which can result in an adverse impact on their quality of life.
  • 54. Psychological Impact of Craniofacial Anomalies: An Annotated Bibliography Singh, V. P., & Moss, T. P. (December 01, 2015). Psychological impact of visible differences in patients with congenital craniofacial anomalies. Progress in Orthodontics, 16, 1, 1-9. There are a variety of potential issues in the patient group of craniofacial abnormalities which are further complicated by an increased occurrence of malocclusion and dental anomalies.
  • 55. Psychological Impact of Craniofacial Anomalies: An Annotated Bibliography Singh, V. P., & Moss, T. P. (December 01, 2015). Psychological impact of visible differences in patients with congenital craniofacial anomalies. Progress in Orthodontics, 16, 1, 1-9. The best treatment method is multifaceted, which involves team collaboration and support from various specialties. Throughout nearly all segments of treatment, dental services are necessary from an early age to late adult life. It is imperative for patients suffering from craniofacial abnormalities to have decent facial and dental appearance as it can have a constructive role on their self-esteem and psychological behavior.
  • 56. Psychological Impact of Craniofacial Anomalies: An Annotated Bibliography Romero-Maroto, M., Santos-Puerta, N., González, O. M. J., & Peñacoba-Puente, C. (August 01, 2015). The Impact of Dental Appearance and Anxiety on Self-Esteem in Adult Orthodontic Patients. Orthodontics & Craniofacial Research, 18, 3, 143- 155. The authors, researchers from the Department of Orthodontics, Department of Psychology and Rey Juan Carlos University from Alcorcón, Madrid, Spain, conducted a study in efforts to evaluate the connection concerning different measurements as to the effects of dental appearance and self-esteem in adult patients undergoing orthodontic treatment.
  • 57. Psychological Impact of Craniofacial Anomalies: An Annotated Bibliography Romero-Maroto, M., Santos-Puerta, N., González, O. M. J., & Peñacoba-Puente, C. (August 01, 2015). The Impact of Dental Appearance and Anxiety on Self-Esteem in Adult Orthodontic Patients. Orthodontics & Craniofacial Research, 18, 3, 143-155. The study had particularly emphasized the potential intervening role of anxiety and depression by conducting measurements as to the effect of dental appearance utilizing the Psychosocial Impact of Dental Aesthetics Questionnaire (PIDAQ). The PIDAQ provides exceptionally useful statistical information on aspects of oral health and oral health-related quality of life (OHRQoL). OHRQoL is a multifaceted construct that measures and documents the practical and psychosocial results of oral disorders.
  • 58. Psychological Impact of Craniofacial Anomalies: An Annotated Bibliography Romero-Maroto, M., Santos-Puerta, N., González, O. M. J., & Peñacoba-Puente, C. (August 01, 2015). The Impact of Dental Appearance and Anxiety on Self-Esteem in Adult Orthodontic Patients. Orthodontics & Craniofacial Research, 18, 3, 143-155. A total of 85 adult patients were individually assigned to one of the two groups (experimental and control). Both groups established that self-esteem correlated with a number of negative outcomes with all measurements of dental appearance outcomes, not including the positive dental self-esteem measurement, which showed statistically significant positive correlations.
  • 59. Psychological Impact of Craniofacial Anomalies: An Annotated Bibliography Romero-Maroto, M., Santos-Puerta, N., González, O. M. J., & Peñacoba-Puente, C. (August 01, 2015). The Impact of Dental Appearance and Anxiety on Self-Esteem in Adult Orthodontic Patients. Orthodontics & Craniofacial Research, 18, 3, 143-155. Anxiety was positively correlated with patients' psychological impact, social influence, and appearance concerns while no statistically significant correlations were shown among dental self- esteem. However, in patients undergoing orthodontic treatment, anxiety was found to play an intervening role amongst dental impact measurements and self-esteem, whereas the control group found anxiety to play an intervening role concerning the psychological impact and self-esteem.
  • 60. Psychological Impact of Craniofacial Anomalies: An Annotated Bibliography Romero-Maroto, M., Santos-Puerta, N., González, O. M. J., & Peñacoba-Puente, C. (August 01, 2015). The Impact of Dental Appearance and Anxiety on Self-Esteem in Adult Orthodontic Patients. Orthodontics & Craniofacial Research, 18, 3, 143-155. Anxiety serves as an essential role in the outcomes of perceived dental treatment effect on self-esteem in adult patients’ undergoing orthodontic treatment. Such results have proved as significant practical results for the objective of bio-psycho-social intervention programs that study cognitive and affective factors as a vital segment of orthodontic treatment in adults.
  • 61. Psychological Impact of Craniofacial Anomalies: An Annotated Bibliography Jenkinson, E., Williamson, H., Byron-Daniel, J., & Moss, T. P. (October 16, 2015). Systematic Review: Psychosocial Interventions for Children and Young People with Visible Differences Resulting from Appearance Altering Conditions, Injury, or Treatment Effects. Journal of Pediatric Psychology, 40, 10, 1017-1033. The authors, researchers from the Centre of Appearance Research, University of the West of England, conducted a study in efforts to assess the efficiencies of psychosocial interventions for children and adolescents with discernible facial differences with respects to improving self-confidence, social functioning, psychological health, and behavioral results analytically.
  • 62. Psychological Impact of Craniofacial Anomalies: An Annotated Bibliography Jenkinson, E., Williamson, H., Byron-Daniel, J., & Moss, T. P. (October 16, 2015). Systematic Review: Psychosocial Interventions for Children and Young People with Visible Differences Resulting from Appearance Altering Conditions, Injury, or Treatment Effects. Journal of Pediatric Psychology, 40, 10, 1017-1033. Studies involved multiple appropriate databases and electronic sources, meeting pre-specified appraisal and eligibility criteria, evaluated using methods that aim to minimize bias. The studies conducted utilized the Preferred Reporting Items for Systematic Reviews and Meta-Analyses checklist (PRISMA), a validated, evidence-based applied reporting and conducted instrument utilized as a basis for reporting systematic assessments of research, and in particular assessments of interventions.
  • 63. Psychological Impact of Craniofacial Anomalies: An Annotated Bibliography Jenkinson, E., Williamson, H., Byron-Daniel, J., & Moss, T. P. (October 16, 2015). Systematic Review: Psychosocial Interventions for Children and Young People with Visible Differences Resulting from Appearance Altering Conditions, Injury, or Treatment Effects. Journal of Pediatric Psychology, 40, 10, 1017-1033. Empirical research studies assessed the effectiveness of a residential social camps programs, social interaction skills training (SIST), behavioral therapy (BT), cognitive behavioral therapy (CBT), and physician-based assessment and counseling for exercise.
  • 64. Psychological Impact of Craniofacial Anomalies: An Annotated Bibliography Jenkinson, E., Williamson, H., Byron-Daniel, J., & Moss, T. P. (October 16, 2015). Systematic Review: Psychosocial Interventions for Children and Young People with Visible Differences Resulting from Appearance Altering Conditions, Injury, or Treatment Effects. Journal of Pediatric Psychology, 40, 10, 1017-1033. According to the American Camp Association residential camps help promote social interaction and self-efficacy among young adults who have special needs. SIST studies are conducted in efforts to assess the degree of social phobia and social anxiety as a result of disfigurement. BT and CBT are both scientifically established forms of psychotherapy that are effectual for various disorders and problems.
  • 65. Psychological Impact of Craniofacial Anomalies: An Annotated Bibliography Jenkinson, E., Williamson, H., Byron-Daniel, J., & Moss, T. P. (October 16, 2015). Systematic Review: Psychosocial Interventions for Children and Young People with Visible Differences Resulting from Appearance Altering Conditions, Injury, or Treatment Effects. Journal of Pediatric Psychology, 40, 10, 1017-1033. The reports in the studies retained a high and unclear risk of bias. Studies on residential social camps programs studies and physician-based assessment and counseling for exercise showed very little to no effect post-intervention with respects to self- confidence, social functioning, and psychological health. The five research studies assessing the effectiveness of SIST, CBT, and BT provided very limited support as to their level of efficiency.
  • 66. Psychological Impact of Craniofacial Anomalies: An Annotated Bibliography Jenkinson, E., Williamson, H., Byron-Daniel, J., & Moss, T. P. (October 16, 2015). Systematic Review: Psychosocial Interventions for Children and Young People with Visible Differences Resulting from Appearance Altering Conditions, Injury, or Treatment Effects. Journal of Pediatric Psychology, 40, 10, 1017-1033. In closing, the study is inconclusive and requires further research before strong conclusions can be established. Supporting and adequate evidence is necessary as any erroneous or misleading contextual factors may lead to incorrect conclusions. Further meticulous research utilizing proper conclusive measures in efforts to assess the efficiency of interventions for children and young adults with discernible facial differences is required.
  • 67. Psychological Impact of Craniofacial Anomalies: An Annotated Bibliography Bemmels, H., Biesecker, B., Schmidt, J. L., Krokosky, A., Guidotti, R., & Sutton, E. J. (January 01, 2013). Psychological and Social Factors in Undergoing Reconstructive Surgery Among Individuals with Craniofacial Conditions: An Exploratory Study. The Cleft Palate-Craniofacial Journal: Official Publication of the American Cleft Palate-Craniofacial Association, 50, 2, 158-67. The authors, researchers from the Department of Educational Psychology, University of Minnesota, Minneapolis, Minnesota; conducted a study on reconstructive plastic surgery and its’ effectiveness in improving psychological health for children suffering from craniofacial anomalies. Very few studies have investigated the difficulties of reconstructive plastic surgery beyond the physical uncertainties and risks consisting of: negative treatment outcomes, brain damage, infection, and sometimes even death.
  • 68. Psychological Impact of Craniofacial Anomalies: An Annotated Bibliography Bemmels, H., Biesecker, B., Schmidt, J. L., Krokosky, A., Guidotti, R., & Sutton, E. J. (January 01, 2013). Psychological and Social Factors in Undergoing Reconstructive Surgery Among Individuals with Craniofacial Conditions: An Exploratory Study. The Cleft Palate- Craniofacial Journal: Official Publication of the American Cleft Palate-Craniofacial Association, 50, 2, 158-67. The objective of this subjective study is to recognize the social and psychological inferences that such interventions can have for patients suffering from craniofacial anomalies. The study involved a total of 38 individuals with various craniofacial disorders between the ages of 12 to 61.
  • 69. Psychological Impact of Craniofacial Anomalies: An Annotated Bibliography Bemmels, H., Biesecker, B., Schmidt, J. L., Krokosky, A., Guidotti, R., & Sutton, E. J. (January 01, 2013). Psychological and Social Factors in Undergoing Reconstructive Surgery Among Individuals with Craniofacial Conditions: An Exploratory Study. The Cleft Palate-Craniofacial Journal: Official Publication of the American Cleft Palate-Craniofacial Association, 50, 2, 158-67. All patient participants were selectively considered before recruitment in this study. The variety of patient participant viewpoints and experiences reveal the complication of reconstructive plastic surgery. Craniofacial surgeon teams involved in patient care play a vital role in advising patients as well as their parents on the subject of current treatment options and alternatives.
  • 70. Psychological Impact of Craniofacial Anomalies: An Annotated Bibliography Bemmels, H., Biesecker, B., Schmidt, J. L., Krokosky, A., Guidotti, R., & Sutton, E. J. (January 01, 2013). Psychological and Social Factors in Undergoing Reconstructive Surgery Among Individuals with Craniofacial Conditions: An Exploratory Study. The Cleft Palate-Craniofacial Journal: Official Publication of the American Cleft Palate-Craniofacial Association, 50, 2, 158-67. The social and psychological repercussions of reconstructive plastic surgery should be precisely communicated in efforts to help families consider the uncertainties and risks as to the benefits of reconstructive plastic surgery in an informative and expressive manner.
  • 71. REFERENCES Knight, J., Cassell, C. H., Meyer, R. E., & Strauss, R. P. (May 01, 2015). Academic Outcomes of Children With Isolated Orofacial Clefts Compared With Children Without a Major Birth Defect. The Cleft Palate-Craniofacial Journal, 52, 3, 259-268. Geirdal, A. Ø., Saltnes, S. S., Storhaug, K., Åsten, P., Nordgarden, H., & Jensen, J. L. (April 01, 2015). Living with orofacial conditions: psychological distress and quality of life in adults affected with Treacher Collins syndrome, cherubism, or oligodontia/ectodermal dysplasia—a comparative study. Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation - Official Journal of the International Society of Quality of Life Research, 24, 4, 927-935.
  • 72. REFERENCES Raquel Gonçalves Vieira-Andrade, & Saul Martins de Paiva and Leandro Silva Marques. (2015). Impact of Malocclusions on Quality of Life from Childhood to Adulthood. InT Seehra, J., Newton, J. T., & DiBiase, A. T. (January 01, 2011). Bullying in school children - its relationship to dental appearance and psychosocial implications: an update for GDPs. British Dental Journal, 210, 9, 411-5. Masnari, O., Schiestl, C., Rössler, J., Gütlein, S. K., Neuhaus, K., Weibel, L., Meuli, M., ... Landolt, M. A. (January 01, 2013). Stigmatization predicts psychological adjustment and quality of life in children and adolescents with a facial difference. Journal of Pediatric Psychology, 38, 2, 162-72. Mathiesen, A. M., Frost, C. J., Dent, K. M., & Feldkamp, M. L. (December 01, 2012). Parental Needs among Children with Birth Defects: Defining a Parent-to-Parent Support Network. Journal of Genetic Counseling, 21, 6, 862-872.
  • 73. THE PSYCHOLOGICAL IMPACT OF CHILDREN BORN WITH CRANIOFACIAL ABNORMALITIES Thank you for reading this report! Connect with us online at: assuaged.com or via Facebook! TREACHER COLLINS SYNDROME