“Worries about other people’s reaction are one of the most frequently expressed concerns of parents of children with facial differences. These concerns are also an important factor in the decision for plastic surgery,” says Ornella Masnari, a psychologist and PhD student at University Children’s Hospital in Zurich, Switzerland. Regrettably, up to now, there has been little research in this field. Therefore, Masnari and her colleagues thought, “Let’s do our own study.”
Masnari described this so called “stigma study”and its findings in the 2012 Nevus Outreach Conference in Texas. She talked about the culture we live in, which emphasizes the importance of beauty and overall physical attractiveness. Facial appearance, in particular, exerts a strong impact on social interactions, she pointed out. We often judge one another on the basis of our appearance. But what exactly is the first person experience of stigmatization? What is the frequency of these experiences? And how do stigma experiences affect psychological adjustment and quality of life?
To find out, Masnari and her colleagues collected data from 88 families recruited at the University Children’s Hospital in Zurich, Switzerland and the University Medical Hospital in Freiburg, Germany. The children included in this study were nine months through 16 years old and had a visible facial differences, including burn scars, port-wine stains, infantile haemangioma, and congenital melanocytic nevi (CMN). Masnari handed a questionnaire to all parents and, additionally, conducted one-to-one interviews with 31 children aged seven through 16 years.
The findings of this study are published in the Journal of Plastic, Reconstructive and Aesthetic Surgery (Epub, July 6, 2012) and in the Journal of Pediatric Psychology (in press, 2012). The first publication focuses primarily on the frequency of reported stigma experiences in children and teens with facial differences, while the second publication addresses more directly the psychological adjustment and health-related quality of life of these children.
Masnari learned that most children and teens noticed people staring at them, or appearing startled when they saw them for the first time. They also reported instances of embarrassment, as well as pity. About a quarter of children and teens reported hostile behavior: They said people had called them names, made fun of them, or bullied them in some way.
Notably, children in this study reported significantly more stigma experiences than a control group of children without facial differences, who were matched to study participants for age, gender, and socio-economic status. Negative responses were reported most often in individuals with facial differences that covered more than 25 percent of their face.
Quality of Life
The concept of health-related quality of life assesses the well being and functioning in everyday life, including physical, psychological, and social domains. Parents of preschool children reported a good health-related quality of life for their children. But parents of children ages seven to 16 years reported several impairments, including poorer physical and psychological well being than was usually reported by parents of children without a visible difference. Notably, further analyses demonstrated that perceived stigmatization was the best predictor of reported quality of life, with children and teens, who experience high levels of stigmatization having the greatest risk of impaired quality of life.
The Good News
“Social support, however, was normal in both self-reports and parent-reports,” Masnari says. “This supports the observation that although facial difference may cause some difficulties in social encounters, it does not prevent children from having close friendships.
“Also, although some children and teens may experience some difficulties, many of them are doing very good. Individuals can develop effective ways of coping with stigma experiences. The psychosocial impact of looking different can be minimal for many.”
These findings suggest that appropriate psychosocial support may be crucial to enhancing quality of life — especially in older children and those with large facial differences. For example, psychologists can offer cognitive behavioral therapy as well as social skills training, which may hugely benefit children and teens.
“Professional support can also help in making the decision about plastic and reconstructive surgery. While surgery may reduce some hurtful experiences, however, a complete resolution of facial differences is unlikely,” Masnari says. “For this reason, medical care should be accompanied by easy access to ongoing psychological assistance to enhance a child’s overall quality of life.”
To enhance the support of individuals with facial differences and their families, Masnari and her colleagues are designing an online platform, with useful information for affected people. They want to give families the opportunity to connect online or in person with other families. They also plan several campaigns to raise awareness and prevent stigmatization of people with visible differences.
- Masnari, O. et al. (in press). “Stigmatization Predicts Psychological Adjustment and Quality of Life in Children and Adolescents with a Facial Difference.” Journal of Pediatric Psychology.
- Masnari, O. et al. (Epub, July 6, 2012). “Self- and parent-perceived stigmatization in children and adolescents with congenital or acquired facial differences.” Journal of Plastic, Reconstructive & Aesthetic Surgery.