The document summarizes a study on the quality of life of children living with oro-facial clefts such as cleft lip and/or cleft palate. Through interviews with parents, researchers identified two main problem categories impacting children's quality of life after surgery: insufficient functional well-being including difficulties eating, speaking, and dental problems, and insufficient socio-emotional well-being resulting in anxiety, shame, lack of peer interaction and unhappiness with their appearance. The study concludes that multidisciplinary support programs are needed to help children cope with daily life challenges posed by their condition.

1. Kalvin Smith
Dental Hygiene Theory I
State Fair Community College
April 1, 2019
Living with Oro-Facial Clefts

2. Prevalence and Problems
• Oro-facial clefts, such as cleft lip and/or cleft palate are one of the most
widespread birth defects.
• “The prevalence of oral clefts is about 9.92 per 10,000 live births. In Iran, the
incidence of oral cleft is reported to be about 1.0 per 1,000 live births” (Zeraatkar
et al, 2019).
• In addition to the physical defect, oro-facial clefts are associated with a large
number of problems, such as “speech disorder, hearing deficit, chronic ear
infection (serious otitis media), dental and palatal deformities, and psychosocial
problems” (Zeraatkar et al, 2019).

3. Studying Quality of Life
• The purpose of the study conducted in this article was to determine the quality of
life in children who have had cleft lip and palate (CLP) surgery.
• “The study was performed using the qualitative content analysis method. In the
beginning, semi-structured, in-depth interviews as well as field notes were used as
the strategy for data collection” (Zeraatkar et al, 2019).
• Researchers involved with the study interviewed the parents of eighteen 4-6 year-
olds to determine if the children experienced any struggles that would influence
their quality of life. Each struggle was organized by category and sub-category.

4. Insufficient Functional Well-Being
• The caregivers’ experiences indicated that the children lacked functional well-
being. They have impairments in their everyday functions. “This concept, which
was frequently observed in our results, contained three more related sub-
categories, including difficulty eating, difficulty speaking and dento-facial
problems” (Zeraatkar et al, 2019).
Operated cleft region showing
irregular, missing, and hypoplastic
teeth

5. Difficulty Eating
• “Among the congenital deformities that most frequently influence the chewing
function, the most prevalent is the CLP” (Zeraatkar et al, 2019).
• Based on the parents’ experiences, the children faced three major problems with
eating, which included “difficulty in incising foods with anterior teeth, difficulty in
chewing hard foods with posterior teeth, and regurgitating food and liquid from the
nose” (Zeraatkar et al, 2019).
• Medium cooked meats are one of the essential foods which these affected children are
denied due to the inability to chew comfortably
• Parents noted that because of difficulty with chewing hard foods, their children have a
tendency to eat soft foods. They also noted that their children do not like to drink in
public for fear of embarrassment due to regurgitating.

6. Difficulty Speaking
• “Another serious problem in these children is
difficulty in speaking that could be described with
hypernasal and unintelligible voice, which invariably
results in a fear of speaking and communicating”
(Zeraatkar et al, 2019).
• Parents found that speech problems lead to their
children feeling teased and isolated.
• “Speech therapy is a common treatment required
for CP patients. Lack of clarity in their speech might
discourage them from having communication with
others” (Zeraatkar et al, 2019).

7. Dento-Facial Problems
• “Alveolar clefts affect the number of teeth in the arch. One or more teeth might be
missing in these children” (Zeraatkar et al, 2019).
• “Furthermore, due to previous surgeries and missing tooth, dental crowding is
inevitable. Orthodontic treatment for these children is necessary prior to alveolar
bone grafting” (Zeraatkar et al, 2019).

8. Insufficient Socio-Emotional
Well-Being
• The second problem category
determined by the researchers was
insufficient socio-emotional well-
being. Children with oro-facial clefts
have been noted to suffer from shame,
anxiety, insufficient peer interaction,
and dissatisfaction with their
appearance.

9. Anxiety & Shame
• Anxiety one of the most common feelings among these children. They feel constant
stress and pressure.
• “This anxiety is defined as feeling worried or anxious about appearance, being
worried about what other people think about them and being teased, bullied or
called names by other children” (Zeraatkar et al, 2019).
• Disfiguration in facial appearance is one of the many distressing issues for these
children. Even with multiple surgical revisions, they still see the differences
between themselves and others, which leads to feeling ashamed.

10. Insufficient Peer Interaction &
Dissatisfaction with Appearance
• “Based on caregivers’ opinions, physical and facial deformity leads to lack of social
interactions and thus, causing social isolation” (Zeraatkar et al, 2019).
• Most of the participants believed that their children were not willing to play with
their peers. Facial differences and linguistic difficulties cause them to be mocked by
others; hence, they cannot develop good relationship with others
• Most of the parents in this study mentioned that their children are unhappy with
their physical appearance, even after surgery. To some extent, the parents believe
this self-consciousness has made their children depressed.

11. Quality of Life for Patients with Oro-Facial
Clefts
• After surgical repairment, the quality of life for patients with oro-facial clefts, such
as cleft lip and/or cleft palate does increase.
• However, children with these clefts still struggle with insufficient functional and
socio-emotional well-being.
• “Multidisciplinary interventional strategies, such as psychological aids are required
to improve their diurnal life in every respect and should be considered from the
early stages of treatment, or even early stages of diagnosis” (Zeraatkar et al, 2019).
• These supportive programs should be continued until a sufficient level of coping
with daily conditions are achieved in later part of their lives.

12. Reference
Zeraatkar, M., Ajami, S., Nadjmi, N., Faghihi, S. A., & Golkari, A. (2019). A qualitative
study of children's quality of life in the context of living with cleft lip and
palate. Pediatric health, medicine and therapeutics, 10, 13-20.
doi:10.2147/PHMT.S173070

13. Let’s Play a Game!
• https://create.kahoot.it/share/oral-facial-clefts/fe119d2e-fbc0-4401-8877-
d76d08b5171e