Psychosocial Factors

Our noses and mouths are involved in so much more than we think

Cleft lip + palate not only affects how we look, but it also affects function.

Where?

Eating, breathing, hearing, speaking, the list goes on.

Considering these are things we do every day, and some of them are necessary for survival, the life of a cleft lip + palate patient can get complicated.

And unfortunately, experiencing these issues can lead to tremendous psychosocial issues for a child and even adults.

Since much of a cleft lip + palate patient’s life is focused on mending the physical issues, psychological issues tend to be neglected. In my opinion, treatment should only be considered a success if the patient is physically and psychologically strong.

Not only are the surgeries confusing and a lot for a child to endure but also the social effects from being seen as different at school and at home are difficult for children to go through.

Studies have shown that even though cleft lip + palate does not have a major psychological impact as the child becomes an adult, the child still has psychological issues including behavioral issues, dissatisfaction with facial appearance, and symptoms of anxiety and depression.¹

Negative responses from outsiders regarding appearance or speech can adversely affect self-image. Issues with the nose and teeth are specifically the areas of concern when it comes to body image for these patients.²

In a study by Khargekar et al.³ that evaluated the psychological factors associated with cleft lip + palate patients, it was found that:

1. Most patients are aware of the problem after 6 years of age.
2. Patients felt they are specially treated by parents when compared to siblings.
3. Patients are teased by siblings.
4. Parents of patients with clefts are more tolerant of misbehavior in their child.
5. Being teased in school and having difficulty in communication hindered social interactions>>this resulted in cleft patients not being comfortable with new people, having a loss of confidence in job interviews, and difficulties in marriage due to lower self-esteem.
6. Patients are not satisfied with the treatment outcome.
7. Unrealistic expectations from surgery result in dissatisfied patients.

It is no surprise that attractive people are seen as brighter, having more positive social behavior, and receive more positive treatment than their less attractive counterparts.⁴ It was even proven in a study! In some ways, it is not even the fault of the observer…I was taught in an art class I took in college that the human eye needs to see a certain level of facial symmetry, and if one thing is just a little bit off, we, as humans, do a double-take and may consider the asymmetry as unattractive. For most cleft lip + palate patients, symmetry is just not something we can ever attain.

And the worst part is…

We know we aren’t symmetrical. We know people will do double-takes. And that is hard. That makes us want to put our heads down. That makes us want to make sure we are smiling all the time in an effort to not draw attention to the scars on our faces. That makes us scared to talk in front of a large group of people. And that makes it hard for us to make friends.

What can be done to help?

1. Social workers need to be part of the craniofacial team.
   
   • • It is never too early for the patient to speak to someone about how he or she is feeling and about any difficulties, psychologically, the patient is going through.

    

2. Continued speech therapy is an integral part of treatment for the cleft patient.
   
   • • It seems as though many patients undergo early speech therapy but do not continue while getting older. Continued speech therapy and secondary speech evaluations are very important and can help build the patient’s self-image and self-confidence.

    

3. Positive reinforcement from parents is essential.
   
   • • I cannot emphasize enough how important it is for parents to constantly remind their children they are smart before they are beautiful. Intelligence, bravery, and accomplishments should be portrayed as more important qualities rather than drawing attention to physical characteristics.

    

4. Realistic expectations from surgeries need to be discussed.¹
   
   • Many patients are given the assumption that the surgeries will correct any physical malformations they have. As a result, too much emphasis is placed on these surgeries, and unrealistic expectations are a result. Doctors need to make sure patients understand what the outcomes of the surgeries will be.

My experience

My earliest memory of feeling different is from 1st grade, when I had a nose surgery, and I went to school with bandages on my face. I remember my teacher giving me special attention and letting me sit on her lap during story time. While this was a nice gesture, I have since taken the idea with me that I can get things in life by letting people feel sorry for me. My parents have even admitted to me that they give me special treatment because of what I have been through. At the time, it was nice to know I was being treated special, but I wish I was just treated like everyone else.

The most common comment I’ve heard from people towards me is that I look sad when I’m not smiling, and people are constantly asking me if I’m upset about something. That is one of the most frustrating things for me because at rest, my face just looks different because it’s asymmetrical. People view that as sad. I find myself feeling the pressure from other people to constantly be smiling just so it doesn’t draw attention to the differences in my face.

I’ve also been bullied my whole life for the asymmetry in my nose and the way my voice sounds. These experiences have seriously affected my life. I didn’t have any true friends until high school, and I still struggle making friends today. Every time I see a picture of myself, I first look at my nose, and I hate photos that are taken straight on. I also despise hearing my voice in a video recording, and I lack self-confidence on the phone.

I’m now 29 years old and remember vividly all the times I have been made fun of. These experiences stay with us as adults and shape us into the people we become.

It does get better, but it is impossible to forget my past.

It is so important to follow the guidelines listed above that stem from my personal experiences. I hope I can help other children understand that their minds will always be more important than their physical qualities, and I hope they can gain a positive self-image in that way.

The support from my family and friends has meant more to me than they could ever imagine. They make me feel like it’s okay to be me, regardless of what I look like or sound like.

 

¹Hunt, Orlagh & Burden, Donald & Hepper, Peter & Johnston, Chris 2005. The psychosocial effects of cleft lip and palate: A systematic review. European journal of orthodontics 27. 274-85
²Tyl J, Dytrych Z, Helclová H, Scüller V, Matĕjcĕk Z, Beránková A 1990. Psychic and social stress of children with cleft lip and palate. Ceskoslovenska Pediatrie 45: 532–536 
³Nitin Khargekar, Naveen Khargekar, Vandana Khargekar, Surabhi Rajan 2016. Cleft Lip and Palate- A Psychology Insight. Science Journal of Clinical Medicine. Special Issue: Clinical Conspectus on Cleft Deformities. 5(4-1):37-40
⁴Dion, K., Berscheid, E., & Walster, E. 1972. What is beautiful is good. Journal of Personality and Social Psychology. 24(3):285-290.