Here are some of the research projects we are working on in DSIL. Please see the Publications page to read the original articles about each project.

 

Adults with Rare Disorders Support (AWaRDS) Study

The Adults with Rare Disorders Support project aims to improve the psychological and social support needs of people with a variety of rare diseases and disorders. This multi-part project involves surveys and focus groups and records types of information and support available from rare disease organizations. Results from the first survey were published in Orphanet Journal of Rare Diseases; you can view a brief summary of the results. A study of the challenges participants reported is now published in the Journal of Health Psychology; here is a brief summary.

Communicating without the Face

In this project, funded by the National Institutes of Health, we recorded people with facial paralysis expressing emotions. People with congenital facial paralysis used more alternative expression (i.e. increased expressivity in the body and voice) compared to people with acquired facial paralysis.  

Observers who watched the videos had difficulty recognizing happiness in people with severe facial paralysis, and rated them as less happy than those with mild facial paralysis, even though the individuals with facial paralysis felt the same level of happiness. However, people who used more alternative expression were viewed as happier, suggesting that alternative expression is a useful strategy for people with facial paralysis to improve others’ impressions.

Facial paralysis is a highly visible but unrecognizable disability. Observers immediately notice the distinctive appearance of someone with the condition but do not understand why the person looks or behaves that way. In a follow-up study, we tested whether a few paragraphs of educational information about the cause, nature, and accomodations needed for facial paralysis (focusing on the body and voice, rather than the face), could improve observers' impressions. Results offer preliminary support for the benefits of educating about a rare disability: people who read educational information formed more positive impressions of individuals with facial paralysis than those who were not given information.

Disability Self-Concept

As disability can be conceptualized as the largest minority group in the US, extending social psychological theories of ethnic identity are a novel way to understand disability. Based on Social Identity Theory, there are two main ways that minority group members (in this case, people with disabilities) manage stigma. First, some may attempt to assimilate, or “pass” as a majority group member by distancing themselves from the minority group and strive to be as normal as possible. On the other hand, some may “affirm” their disability identity by developing disability pride.

Although nearly 20% of the population has a disability, one of our studies found that only 13% of those individuals identify as people with disabilities. We found that stigma and severity of impairment were the strongest predictors of identifying as a person with a disability.

We've found that individuals with congenital mobility disabilities had higher satisfaction with life than those with acquired mobility disabilities. Disability identity and disability self-efficacy mediated this relationship, predicting greater satisfaction with life. Extending this work to a different population, we found that disability identity is also associated with lower anxiety and depression among people with multiple sclerosis. These findings suggest that healthcare practitioners should shift from attempting to “normalize” people with disabilities to developing disability self-concept. 

The Rejection-Identification Model argues that the negative impacts of stigma, such as decreased self-esteem, may be mitigated when members of the stigmatized group choose to identify with each other rather than with the majority culture. Supporting this model, we have found that disability pride protects self-esteem by mediating the relationship between stigma and self-esteem.

Adaptation in Congenital vs. Acquired Disability

Although people with congenital disabilities are often assumed to be better adapted than people with acquired disabilities, few studies have tested this, and fewer have attempted to explain the reasons behind these differences. Theories of adaptation to disability often describe stages of loss, which do not apply to people who were born with their conditions. Our research has found that people with congenital facial paralysis use more alternative expression than those with acquired facial paralysis. This project provided some of the first behavioral evidence that people with congenital disabilities are better adapted than those with acquired disabilities. 

In a second study, we examined whether disability self-concept could be the reason for differences in adaptation between people with congenital and acquired disability. As predicted, we found that people with congenital disability had higher satisfaction with life than those with acquired disability, and that disability self-concept mediated this relationship. 

This research suggests that interventions should focus on people with acquired conditions and incorporate protective factors identified among people with congenital conditions such as disability self-concept. 

Focus Groups on Living with Moebius Syndrome

We conducted focus groups of teenagers and adults with Moebius Syndrome, a rare congenital condition characterized by facial paralysis. These focus groups, funded by the Moebius Syndrome Foundation, explored the social interaction experiences and strategies of individuals with this rare condition. Five themes emerged: social engagement/disengagement; resilience/sensitivity; social support/stigma; being understood/misunderstood; and public awareness/lack of awareness of Moebius Syndrome. Participants used alternative expression such as vocal tone, gestures, and humor. The combination of being unable to express oneself with the face, having a facial difference, and having a rare disease is particularly stigmatizing.