Thank you for your interest in our project, Hearing Parental Voices: An Opinion Survey on the Use of Plastic Surgery for Children with Down Syndrome. During the months of January, February, and March, we collected surveys from parents to assess their feelings and opinions related to plastic surgery for children with Down syndrome. It was our hope to give parents an open arena to discuss this controversial subject. We feel that the insightful comments presented by parents will be a source of education for healthcare workers, educators, and other families. As such, we have posted the results of the survey on this website for all to observe. We also plan to publish a formal write-up of these results in a professional journal. We thank those parents who took the time to fill out our survey. Your efforts are greatly appreciated!
Sincerely,
Marcie Lewis
Graduate Student
Brandeis University
Survey Results
Total Respondents: 265
Ascertainment: How parents were recruited:
Demographics:
Parent: father (12.9%), mother (87.9%)
Mean birth year of parent: 1961.4 (range from 1933 – 1980, std. dev. = 8.3yrs)
Ethnic background:
| White | 91.7% |
| Hispanic | 3.4% |
| African American | 0.8% |
| Asian or Pacific Islander | 0.8% |
| Other | 1.9% |
Education of parent:
| less than 8th grade | 0% |
| 8th – 11th grade | 0.4% |
| high school graduate | 27.2% |
| associate degree | 23.8% |
| bachelor’s degree | 30.2% |
| graduate degree | 18.1% |
Household income:
| $0-19,000 | 1.5% |
| $20,000-39,000 | 17.4% |
| $40,000-59,000 | 28.7% |
| $60,000-79,000 | 16.6% |
| $80,000+ | 31.7% |
Hometown description: rural (26.4%), suburban (55.8%),
urban (17.0%)
Number of children with Down syndrome in family: 1 child
(94.0%), 2 or more children (5.3%)
Mean number of children total in family: 2.6
Mean age of child with Down syndrome: 5.9years old
Time of diagnosis:
| Before birth | 12.5% |
| At birth | 76.2% |
| During first year | 9.4% |
| After first year | 0.8% |
Amount of inclusion in school for those children who are school aged or older:
| No inclusion in school | 6.4% |
| Partial inclusion in school | 23.4% |
| Full inclusion in school | 24.2% |
| Not applicable | 46.0% |
Number of friends of child with special needs:
| All | 1.9% |
| Most | 9.4% |
| Some | 17.4% |
| Few | 20.8% |
| none | 9.4% |
Questions that assessed value and appropriateness of
various treatments for children with Down syndrome:
Has parent pursued (or planning to pursue) the following treatments
for their child?:
| Type of therapy | has pursued | has not pursued |
| Early Intervention | 97% | 3% |
| Speech/Language therapy | 97.4% | 2.3% |
| Vitamin Therapy | 40.0% | 59.6% |
| Growth Hormone therapy | 3.8% | 94.0% |
How appropriate does parent think the following goals are
for surgical intervention?:
| Purpose of the surgery | extrem. approp. | approp. | inapprop. | extrem. inapprop. |
| To alter child’s physical health | 56.2% | 31.3% | 4.2% | 7.5% |
| To alter child’s self-esteem | 4.9% | 31.7% | 41.1% | 22.3% |
| To alter social acceptance of child | 3.0% | 14.0% | 34.3% | 47.9% |
In choosing interventions for their child, does parent feel
their goals differ from that of the physician/healthcare system?:
goals differ 24.5%, goals do not differ 74.0%
Questions regarding how facial features of child play
a role in his/her life:
At the time of diagnosis, did parent feel that the facial
features of Down syndrome would affect the following aspects?
| Aspect considered | thought facial features would affect | thought facial features would not affect |
| Parent/child bonding | 9.4% | 90.2% |
| Child’s self esteem | 19.2% | 80.4% |
| Social acceptance of child | 70.9% | 29.1% |
| Social development of child | 30.2% | 69.8% |
Have parent’s responses to previous question changed at a
later date:
| Parent’s view at diagnosis | view has changed | view has not changed |
| Facial features would affect one of the four aspects | 29.0% | 71.0% |
| Facial features would not affect any of the four aspects | 2.9% | 97.1% |
Does parent feel their child’s life would be changed in the
following ways if child’s disability did NOT have recognizable physical
characteristics?:
| Aspect Considered | greatly increased | increased | unaffected | decreased | greatly decreased |
| Parent/child bonding | .8% | 1.5% | 94.7% | 2.3% | 0% |
| Child’s self-esteem | 1.1% | 13.2% | 80.0% | 1.5% | .4% |
| Social acceptance | 6.8% | 47.5% | 35.1% | 8.3% | .4% |
Does parent feel that their child’s facial features provide social cues
for others, i.e. provide information that determines who to interact with
child?:
yes (83.8%), no (15.1%)
Of 83.8% who thought facial features provide social cues, they thought
providing these social cues was…:
extremely beneficial (12.4%), beneficial (69.6%), harmful (17.1%), extremely harmful (.9%)
Questions regarding feelings about plastic surgery
for their child:
Which aspects of plastic surgery would the parent consider for cosmetic
reasons?:
| Type of procedure | definit. consider | prob. consider | prob. not consider | definit. not consider |
| Adjusting eyes | 1.5% | 4.2% | 10.2% | 83.4% |
| Inserting implants | 1.5% | 3.4% | 8.7% | 85.3% |
| Reducing tongue | 1.9% | 3.4% | 12.1% | 81.1% |
Would parent consider reducing the tongue for the following health benefits?:
| Purpose | definit. consider | prob. consider | prob. not consider | definit. not consider |
| Improve breathing | 29.8% | 49.8% | 10.6% | 7.9% |
| Alleviate difficulty eating | 25.3% | 49.4% | 13.6% | 9.1% |
| Decrease respir. infections | 24.5% | 49.1% | 16.2% | 9.4% |
| Decrease drooling | 7.9% | 24.2% | 38.1% | 28.3% |
| Increase articulation/speech | 16.6% | 37.7% | 29.1% | 15.8% |
What are the parent’s concerns about the plastic surgery procedure?:
| Aspect of concern | not at all concerned | mildly concerned | moderately concerned | extremely concerned |
| Physical risk | 1.1% | 4.5% | 16.6% | 76.6% |
| Child’s reaction to surgery | 1.1% | 5.3% | 9.1% | 82.3% |
| Society’s expectation of child | 50.6% | 9.8% | 15.1% | 23.0% |
Overall, what value does the parent think plastic surgery
has for aesthetic benefits?:
extremely beneficial 1.5%, beneficial 12.5%, detrimental 36.6%, extremely detrimental 43.4%
Would parent pursue the surgery?:
yes (8.7%), no (90.6%)
Questions regarding parent’s past experiences with
this procedure:
Has physician/healthcare worker ever had discussion with parent about this procedure?
yes (10.2%), no (89.8%)
What were the parent’s feelings towards that physician/healthcare
worker during this conversation (or if a conversation has not occurred,
what would those feelings be)?:
| Previous account with doctor | extremely positive | somewhat posit. | somewhat neg. | extremely negative |
| Had discussed | 22.2% | 25.9% | 33.3% | 18.5% |
| Had not discussed
(would feel) |
5.4% | 8.6% | 28.5% | 57.5% |
Children who had cosmetic surgery in this sample:
Number of children who had undergone plastic surgery: 1.1% (3 children)
1. removal of epicanthal folds – parent felt it was greatly beneficial
2. tongue reduction – parent felt it was greatly beneficial
3. tongue reduction – parent did not comment on value of surgery
Questions regarding how cosmetic surgery would affect
a child with Down syndrome:
Does the parent agree or disagree that cosmetic surgery
would have the following effects?:
| Effect | strongly agree | agree | neutral | disagree | strongly disagree |
| Cause an identity crisis for the child | 21.9% | 30.6% | 26.8% | 15.1% | 3.0% |
| Create more social acceptance for the child | 2.6% | 18.1% | 22.3% | 35.8% | 19.6% |
| Decrease child’s bond to other children with DS | 3.0% | 14.3% | 30.6% | 38.5% | 12.1% |
| Increase the child’s self-confidence | 1.1% | 9.8% | 28.3% | 38.5% | 21.1% |
| Create unreatlist. expecat. of the child by parents | 21.9% | 29.8% | 22.3% | 16.2% | 7.9% |
| Allow the child to accomplish more academically | 0.4% | 3.8% | 12.1% | 34.7% | 47.5% |
| Create unrealist. expectat. of the child by society | 27.2% | 37.7% | 15.8% | 14.3% | 2.6% |
| Allow the child to have a better social life | 1.1% | 12.8% | 17.0% | 45.3% | 22.3% |
How does parent think the following would be affected if many children
with Down syndrome undergo plastic surgery?:
| Issue | greatly increase | increase | decrease | greatly decrease | *high # of no response |
| Acceptance of children with DS | 0.8% | 26.0% | 35.5% | 10.9% | 26.8% |
| Prejudice against children with DS | 9.1% | 35.1% | 28.3% | 0.8% | 26.8% |
Questions regarding decisions about surgery:
Who does parent feel should be involved in the decision of whether or
not to pursue the surgery?:
| Person | Should be involved in decision | Should not be involved in decision |
| Parent | 94.3% | 4.9% |
| Physician | 70.2% | 29.1% |
| Child | 89.8% | 9.4% |
Who does parent feel should make the final decision about
pursing the surgery?:
parent (55.1%), physician (1.1%), child (41.5%)
Questions regarding the offering of plastic surgery
for children with Down syndrome:
What kind of message does parent feel offering this surgery sends out?:
negative message (88.3%), positive message (8.3%)
Who does parent think this surgery should be offered to?:
| all children with Down syndrome | 25.7% |
| some children with Down syndrome | 27.9% |
| no children with Down syndrome | 44.2% |
Due to the high volume of information in parents’ answers to the open-ended
questions, those results are not posted. However, those comments are being
analyzed for themes, and discussion of those themes will appear in the
published version of these results.
Thank you for visiting our website. We hope this has been educational
for all who have read through these results.