Demographic characteristics of the 48 participants are described in Table . Half were male and 47.9% were age 45 to 64 years. The largest proportion (35.4%) of participants was white, 31% were Hispanic or Latino, and 25% were Asian. Almost half (47.9%) had a college or postgraduate degree. Similar percentages of participants had an annual household income of less than $25,000 (29.2%) and over $100,000 (27.1%). Most participants (79.2%) lived in Manhattan on 9/11.
All codes were reviewed to identify repeated patterns of meaning and categorized into one of four themes: symptoms (physical symptoms and mental symptoms), barriers to care (logistical barriers, evidence, provider relationships, provider dismissal of symptoms, and stigma), not connecting symptoms to 9/11 (aging, 9/11 symptom attribution, and time since 9/11), and program knowledge and utilization (attitudes, knowledge, utilization, sources of information, and WTC EHC). Sample quotations by theme are provided in Table .
Focus group themes and sample quotes
Members of all six groups reported a variety of respiratory symptoms and conditions, including asthma, bronchitis, pneumonia, chronic and persistent cough, lung problems, congestion, and dyspnea. Many reported sinus and throat problems such as infections, allergies, congestion, throat irritation, acid reflux, and laryngitis. Physical symptoms and diseases described less frequently included tinnitus, gastrointestinal disorders, dermatologic conditions, chronic diseases, and cancer.
Many participants reported recurrent physical symptoms that have worsened over time. As mentioned by one participant, “I used to be very healthy, but just getting worse and worse now…in the past, when I had [a] cough, [it] just took one or two weeks to get well. However, recently I have been coughing for six months…” (M). A few reported receiving medical treatment through primary care physicians or outpatient specialists; others reported more serious conditions requiring hospitalization, inpatient treatment, or surgery. Some indicated that the source of their physical ailments had yet to be identified or appropriately treated. Additionally, more than one person reported that their condition(s) interfered with work, “I have pretty bad asthma from 9/11-I’m a [musician], which requires breath” (PA).
Participants described symptoms of anxiety, depression, stress, sleep disturbances, and other conditions affecting their short and long term mental health. Anxiety symptoms included fear of heights, reluctance to fly, other phobias, paranoia, and panic attacks. Participants also mentioned having sleep problems, restlessness, nightmares, and insomnia. One person stated, “Mentally, it destroyed my world, and I had serious posttraumatic stress and depression, for, up until only a year ago, then I started to feel okay again” (RR). Members of the Spanish language group were the most forthcoming when discussing mental health symptoms, openly describing episodes of general anxiety, nervousness, fear, and depression, for example, “I have anxiety. A lot of anxiety since that time, since that September [and] depression.” Some focus group members reported use of psychiatric and sleep medications and mental health hotlines, counseling, or therapy. Conversely, others expressed fears and reservations about medication usage and mental health services.
Barriers to care
Focus group participants faced logistical barriers to care at 9/11 programs, including difficulties with the accessibility and availability of programs and financial concerns. Accessibility issues included trouble contacting programs and concerns regarding the location of various 9/11 programs. A few participants reported that they had to call programs multiple times before getting a live person or were transferred back and forth when they were able to speak with someone. Several participants stated that they did not wish to attend clinics or programs that were situated far from their homes. Others expressed concern that they would be charged for their visit or would have to go through numerous steps or screenings in order to make an appointment. Availability issues included the lack of extended clinic hours and conflicting personal obligations, which also impacted financial concerns. As stated by one of the Spanish language participants, “I was offered help like a year after the event. They asked me to go to a psychologist, but I am the only one supporting my family---the lack of time, I just couldn’t. If you stop going to your work, you can get fired…that’s precisely why I couldn’t go to psychological therapy.”
Several participants reported that they did not seek care from a 9/11 program because they valued their relationship with their current provider and did not think a provider with specialized training on 9/11 was necessary. Some were not sure if 9/11 specialty physicians were more qualified than their regular providers and worried that receiving care at a large program would feel impersonal. One individual explained, “I’d like to have a relationship with a doctor, and the guy that I see, my doctor is great. He was working downtown, and he went through it as well” (LM). Additionally, many participants expressed concerns about the quality of health care providers at 9/11 programs and whether or not these providers had been specially trained to identify and provide care for 9/11-related health issues.
Some participants described feelings of apprehension regarding contacting or utilizing a 9/11 mental health program. A few participants expressed concerns regarding the stigma that may be associated with contacting or attending a 9/11 program for a mental health care need. Moreover, several participants used pejorative terms when discussing mental illness and mental health care. More than one individual stated that they did not feel they required mental health services, as they were “not legitimately crazy”.
Not connecting symptoms to 9/11
Participants expressed reluctance to consider the possible connection between their health issues and the 9/11 disaster. Some attributed their health issues to aging, not readily seeing possible connections between their symptoms and 9/11 because they are, in fact “getting older”, as stated by this participant, “…I wasn’t sure if it was because of old age or something from September 11th” (RR). Others questioned the ability to say that current health issues are related to the events of 9/11 and not something else. One participant wondered, “And if tomorrow I die of something, not just run over by a bus, but something, I don’t see how they could figure out whether my death is related to 9/11 or is not related to 9/11” (LM). Additionally, some posited that recent social or economic events may have affected the mental health of New Yorkers. Participants displayed apprehension about discovering health problems that may have resulted from their disaster exposure, explained best by this volunteer, “Probably a little of it is that I don’t want to go and find out that anything is wrong. A fear kind of thing…I would rather just be blissfully ignorant.” Finally, many participants indicated that their current providers often dismissed the possibility that exposure to the WTC disaster was the source of their health problems.
Program knowledge and utilization
Throughout the course of the focus groups, participants discussed their knowledge of 9/11 health care programs and either their own personal experiences with these programs or those of someone close to them. Overall, knowledge of 9/11 programs was limited, with participants often displaying difficulty distinguishing one program from another. One person stated, “It’s very hard to separate health registry, Red Cross, New York City 9/11 fund. There was so much stuff [information] coming down…” (RR).
While several participants indicated they had friends or family members who received free medications or counseling, few were able to identify the source of these services. When asked if they had ever heard of the EHC, most everyone was familiar with the hospitals where the EHC clinics were located, but either did not know that these hospitals had a 9/11 program or believed that the programs had ended several years ago. Although some participants did not feel they needed care at the time of the focus group, they thought it was important to have a program to go to where the providers were 9/11 specialists. Additionally, participants brought up concerns about being able to “prove” that a condition is related to 9/11, worrying that they could be turned away from one of the programs because their condition is not 9/11-related. One person asked, “…how do they judge whether the illness you want treatment for is because of 9/11?” (NA).
Although the discussions were similar across the six groups, several differences are worth highlighting. As previously mentioned, Spanish speakers were the most forthcoming when discussing mental health issues, as were the younger members of the other groups. Participants in the new adult and Mandarin groups were the most skeptical about the ability to ascribe present health conditions to exposure to the WTC disaster. Lower Manhattan residents spoke about their relationships with their current providers more than any other group. While new adults had the highest level of familiarity with 9/11 health care services, members of the Mandarin and lower Manhattan groups were most likely to have known someone that sought care for a 9/11 condition.