Abstract
BackgroundMany individuals who have 9/11-related physical and mental health symptoms do not use or are unaware of 9/11-related health care services despite extensive education and outreach efforts by the World Trade Center (WTC) Health Registry (the Registry) and various other organizations. This study sought to evaluate Registry enrollees’ perceptions of the relationship between physical and mental health outcomes and 9/11, as well as utilization of and barriers to 9/11-related health care services.MethodsSix focus groups were conducted in January 2010 with diverse subgroups of enrollees, who were likely eligible for 9/11-related treatment services. The 48 participants were of differing race/ethnicities, ages, and boroughs of residence. Qualitative analysis of focus group transcripts was conducted using open coding and the identification of recurring themes.ResultsParticipants described a variety of physical and mental symptoms and conditions, yet their knowledge and utilization of 9/11 health care services were low. Participants highlighted numerous barriers to accessing 9/11 services, including programmatic barriers (lack of program visibility and accessibility), personal barriers such as stigmatization and unfamiliarity with 9/11-related health problems and services, and a lack of referrals from their primary care providers. Moreover, many participants were reluctant to connect their symptoms to the events of 9/11 due to lack of knowledge, the amount of time that had elapsed since 9/11, and the attribution of current health symptoms to the aging process.ConclusionsKnowledge of the barriers to 9/11-related health care has led to improvements in the Registry’s ability to refer eligible enrollees to appropriate treatment programs. These findings highlight areas for consideration in the implementation of the new federal WTC Health Program, now funded under the James Zadroga 9/11 Health and Compensation Act (PL 111-347), which includes provisions for outreach and education.
Highlights
Many individuals who have 9/11-related physical and mental health symptoms do not use or are unaware of 9/11-related health care services despite extensive education and outreach efforts by the World Trade Center (WTC) Health Registry and various other organizations
Many survivors encountered barriers to mental health treatment, including stigma associated with mental illness, lack of knowledge about services, inadequate finances or time, beliefs that others are in greater need of services or that individuals can care for themselves, mistrust of mental health professionals, and fear of discussing the attacks [5,11]
Participants were recruited from enrollees in the Registry who were aged 18 years and older, were not professional rescue and recovery workers, and who resided in New York City (NYC) at the time of the focus groups
Summary
Many individuals who have 9/11-related physical and mental health symptoms do not use or are unaware of 9/11-related health care services despite extensive education and outreach efforts by the World Trade Center (WTC) Health Registry (the Registry) and various other organizations. This study sought to evaluate Registry enrollees’ perceptions of the relationship between physical and mental health outcomes and 9/11, as well as utilization of and barriers to 9/11-related health care services. The WTC Health Registry (the Registry) is a cohort study which tracks the physical and mental health of over 71,000 enrollees exposed to the WTC disaster [1]. Five to six years after 9/11, new post-disaster asthma incidence was 10.2% and nearly one-fourth (23.8%) of enrollees without a diagnosis of PTSD prior to 9/11 screened positive for symptoms of probable PTSD [1]. After the 9/11 disaster, numerous programs that provided physical and mental health services were available to different groups during different time periods [12]
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