The art of coping with a craniofacial difference: helping others through "Positive Exposure".

Finding ways to cope with social stigmatization is an important aspect of achieving adaptation for people living with visible genetic differences. This study describes the way individuals with craniofacial differences use an innovative photography and video experience with Positive Exposure (PE), a non-profit organization based in New York City, as a way to cope with their conditions. Thirty-five individuals between 12 and 61 years of age participated in this study. We administered surveys comprised of open-ended qualitative questions and quantitative measures designed to assess self-esteem, perceived stigma, and hopefulness. Data for this analysis was generated from the written questionnaires and interview transcripts. Most participants reported high levels of self-esteem and hopefulness, suggesting that they were relatively well adapted to their condition. Almost all participants described experiences of stigmatization throughout their lives. However, participants demonstrated their ability to implement a variety of coping strategies to manage stigma. "Helping others" emerged as a prominent strategy among participants, aiding in the often lifelong process of adapting to their genetic difference. PE was described as an avenue through which participants could reach out to individuals and society at large, helping them adapt further to their condition. "Helping others" may also benefit individuals with craniofacial differences who do not consider themselves to be well adapted to their condition. Health care providers can collaborate with PE, advocacy groups and other community or support groups to identify additional ways individuals with craniofacial differences can help themselves by reaching out to others.

Asthma among homeless children in New York City: an update.

Homeless children in New York City had an extremely high asthma prevalence-40%-in a cross-sectional study at 3 shelters (n=740) during 1998 to 1999. We used the same protocol to summarize subsequent data through December 2002. Asthma prevalence was 33% (n=1636); only 15% of the children previously diagnosed were taking an asthma controller medication. Emergency department use was 59%. These data were used to support a class action lawsuit that was resolved in favor of homeless children with asthma in New York City.

Asthma among homeless children: undercounting and undertreating the underserved.

BACKGROUND: In the United States, children of color, children who live in urban medically underserved communities, and children whose families have limited economic resources have excessively high rates of asthma. The identification of high-risk subgroups of underserved children is crucial for understanding the determinants and scope of the childhood asthma epidemic and for developing successful interventions. OBJECTIVE: To determine the population prevalence of asthma among homeless children. DESIGN: Cross-sectional study. SETTING: Three family shelters in New York City. PARTICIPANTS: A total of 740 children whose families entered 3 family shelters from June 30, 1998, to September 18, 1999. MAIN OUTCOME MEASURES: Prior physician asthma diagnosis, current asthma symptoms using National Asthma Education and Prevention Program symptom criteria, current medications, and emergency department use in the past year. RESULTS: Of the children, 26.9% had a prior physician diagnosis of asthma. In addition, 12.9% of the children without a prior physician diagnosis of asthma reported symptoms consistent with moderate or severe persistent asthma. Overall, 39.8% of homeless children in New York City are likely to have asthma. Few children with persistent asthma received any anti-inflammatory treatment. Almost 50% (48.6%) of children with severe persistent asthma had at least 1 emergency department visit in the past year; 24.8% of children with symptoms of mild intermittent asthma had at least 1 visit. CONCLUSIONS: The prevalence of asthma among a random sample of homeless children in New York City is likely to be 39.8%-more than 6 times the national rate for children. Asthma in homeless children is also likely to be severe and substantially undertreated.

Through the viewfinder: Positive Exposure a year later.

Positive Exposure, a non-profit organization founded and directed by former fashion photographer Rick Guidotti and co-directed by psychiatrist Dr. Diane McLean, uses photography and video interviews to explore the lived experiences of people affected with genetic conditions. Positive Exposure challenges pervasive social biases and stereotypes about genetic variation and strives to broaden and enrich societal perceptions of human beauty and spirit. Presented here are the open-ended personal reflections completed by four individuals with craniofacial differences recruited from a support group, Inner Faces. These four case studies aim to relay the professional photo-shoot experiences of people who may be challenged by the stigma associated with craniofacial differences. Questions addressed issues of perceived self-esteem, stigma, hopefulness, and photography experiences. These personal reflections were gathered 1 year following participation in a Positive Exposure photo-shoot. Participants described the ways in which the photo-shoot has been a lasting and life-promoting experience. In addition, these individuals emphasize the integral and enduring role the photographer, Rick Guidotti, played in their personal awakening. Positive Exposure provided these individuals with renewed identification of both inner and outer sources of beauty. These four case studies suggest that Positive Exposure may serve as a sustainable intervention to bolster self-esteem and self-image. Published 2006 Wiley-Liss, Inc.