This LGBTQ+ Community Health Needs Survey is a health needs assessment survey of lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ+) adults ages 18+ who were residents of or high school/university/college/technical school students in Nassau and Suffolk Counties on Long Island, New York. The survey examines the health needs and health care experiences of LGBTQ+ residents and students so that resources can be committed for the greatest possible improvement in their well-being.
This survey will serve as a tool toward reaching four basic goals:
- To improve the health status in the Long Island LGBTQ+ community, increase their life spans, and elevate their overall quality of life. A healthy community is not only one where its members suffer little from physical and mental illness, but also one where its residents enjoy a high quality of life.
- To reduce health disparities in the LGBTQ+ community. Based on knowledge garnered from the survey, interventions can be developed to combat some of the factors and conditions that lead to negative health outcomes.
- To increase accessibility to preventive services. More accessible preventive services will be beneficial in accomplishing the first goal (improving health status, increasing life spans, and elevating the quality of life) while also lowering the costs associated with caring for late-stage disease.
- To provide a basis for improved provider training on the treatment of LGBTQ+ patients in a personalized, affirming, and culturally competent manner.
This LGBTQ+ health needs assessment survey is the result of joint efforts by Stony Brook Medicine (SBM), Professional Research Consultants, Inc. (PRC), and over 30 partners. PRC is a nationally recognized health care consulting firm that has carried out community health needs assessments in hundreds of communities across the United States since 1994.
Demographics
Survey respondents well represented the Long Island LGBTQ+ community along many demographic factors: county of residence, gender, sexual identity, age, income, race and ethnicity.
1,150 completed and validated surveys were received. The key demographic characteristics of the LGBTQ+ sample are shown in the table below. By asking these questions, we were able to attain important insight into issues that should be addressed in efforts to improve LGBTQ+ health, reduce disparities, and build a more sensitive and informed healthcare workforce.
Respondents provided diverse answers when asked to describe their sexual orientation and gender identity in their own words.
Definitions of commonly used LGBTQ+ terms
Thank[s] for this survey. Keep doing this! Doctors and medical [personnel] need to understand that assumptions made regarding a patient's sexual orientation or gender identity are harmful. When care is taken, we feel truly seen by the people in our lives who we trust to oversee our health. That means everything.
Health Status
The survey uncovered details about unique aspects of LGBTQ+ health and life on Long Island and the differences that exist between the regional LGBTQ+ subgroups.
Key Findings
Standout disparities for state and national data
I have been treated badly as a combination of being assigned female, being LBGTAQ+, and being a plus sized individual. This juncture of circumstances makes seeking care exceptionally difficult.
Behavioral Health
“Behavioral Health” means the promotion of mental health, resilience and well-being; the treatment of mental and substance use disorders and support of those who are in recovery, along with their families and communities. (CDC/SAMHSA)
Key Findings Respondents reported profound mental health concerns
Standout disparities for state and national data
LGBTQ+ people are not inherently prone to mental and behavioral health concerns because of their sexual orientation or gender identity, but they are at higher risk because of how they are mistreated and stigmatized in society. [The Trevor Project]
For information on excessive drinking and illicit drug use, see Health-Related Behaviors section.
Long Island Close-Up
I need affordable mental health counseling that my parents wouldn't know about.
Health-Related Behaviors
The survey respondents were asked about their health-related behaviors including their weight status, physical activity, tobacco use, substance use and sexual health.
Key Findings
Long Island Close-Up
Excessive drinking includes heavy and/or binge drinkers:
HEAVY DRINKERS Those reporting 2+ alcoholic drinks per day (for those who identify as male or as gender non-conforming) or reporting 1+ alcoholic drink per day (for those identifying as female) in the month preceding the survey.
BINGE DRINKERS Those reporting 5+ alcoholic drinks on any single occasion (for those who identify as male or as gender non-conforming) or reporting 4+ alcoholic drinks on any single occasion (for those identifying as female) in the month preceding the survey.
A few years ago I asked my (former) primary care provider about the possibility of starting PrEP. He did not know what it was, googled it in front of me in the room after I told him what it was for, and then was dismissive and told me it was probably unnecessary.
Access to Care
Access to health care emerged as a pressing problem. Factors relating to access to care include such things as insurance, transportation barriers, and fear of disrespectful or non-affirming treatment.
Key Findings
Long Island Close-Up
When a provider was dismissive of my experiences, it made me less likely to disclose truthfully to future providers.
Social Determinants of Health
Social determinants of health are the conditions in the environments where people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks. (CDC)
Key Findings
Long Island Close-Up
Being gay is hard enough. Not having enough people in the field of different backgrounds and being gay makes it even harder. There needs to be more people of color in social work, and psychology. More people of the [LGBTQ+] community.
LGBTQ+ Priority Issues
Respondents were presented with 12 health or social issues and asked how important each is for LGBTQ+ people in their own community. Responses were given on a 10-point scale, where 1 is “not at all important” and 10 is “extremely important.”
Transgender Healthcare
"Trans healthcare" is specialized care for transgender and non-binary people. It includes hormone therapy, behavioral health support, gender confirmation surgeries and other supportive services.
All respondents were read the description of “transgender healthcare” and were given the opportunity to respond to the subsequent questions or skip them as not applicable. In all, 206 agreed to answer the questions presented in this section, 70.4% of whom identify as transgender and 29.6% of whom do not.
Key Findings
Having a transgender friendly provider who is educated on transgender healthcare is essential. Down to the words they use for their patients and asking for pronouns, preferred names, and generally knowledgeable about transgender people.
The survey instrument is based largely on the Centers for Disease Control and Prevention (CDC) Behavioral Risk Factor Surveillance System (BRFSS), as well as various other validated and widely used public health surveys. In many ways, it is similar in content to Community Health Needs Assessments of the general Suffolk County population conducted by Stony Brook Medicine in 2014 and 2018. However, it is different from previous surveys in that it is an online survey only and includes additional topics related to the particular needs of LGBTQ+ populations.
To customize this for the LGBTQ+ population, Stony Brook Medicine reviewed other national and international surveys related to the LGBTQ+ population and consulted with community partners to identify questions that should be added. Stony Brook Medicine then conducted focus groups of members of the LGBTQ+ community and incorporated their comments/findings into the final survey instrument. These focus groups were diverse in representation of LGBTQ+ identities, age, geography, race and ethnicity, and were conducted in English and Spanish. Therefore, the final survey contains standard questions on a variety of health conditions and related experiences, as well as customized elements that address particular needs of the LGBTQ+ population.
Sample Approach and Design
The study design for this research effort is exploratory and cross-sectional, consisting of an anonymous, online survey among a convenience (snowball) sample of Nassau and Suffolk County residents and students age 18+ who identify as LGBTQ+ (or questioning or closeted) concerning their individual health-related experiences, behaviors, and needs. The survey was available to respondents in both English and Spanish.
To qualify, potential respondents were required to indicate agreement with a consent statement and answer a series of questions to verify that they met all inclusion criteria. The consent section (initial page/screen of the survey) included information about participation, benefits, risks, confidentiality, contact address, age, and confirmation of not having already completed the survey. Once a respondent entered the survey, they were asked to indicate age, place of residence or school attendance, and whether they identify as an LGBTQ+ person (or identify as straight but have sexual contact with members of the same gender). If answers to any of these questions reveal that they did not meet inclusion criteria, the survey was terminated.
Survey respondents were recruited though widespread distribution of survey information and instructions to access the survey online. Since “snowball” sampling was used, those receiving the information and the survey link were encouraged to forward it to others whom they believe might be interested/eligible. Outreach included the following:
- A link to the survey on the Stony Brook Medicine website. This was available for the entire time that the survey was open. A microsite was maintained with survey information, including links to social media and a link to the survey itself. Both the survey and microsite were provided in English and Spanish.
- Promotion and distribution by more than 30 community partners. These partners distributed survey information (including a detailed FAQ), along with the survey link, to their mailing lists. Partners also posted paper fliers containing QR codes and relevant web addresses at their facilities and sent messages to their followers on social media. Stony Brook additionally provided publicity via digital signage in its University and Hospital facilities.
- Promotion through social media, including Facebook, Instagram, TikTok, Facebook Dating App Network, Grindr, and Snapchat. Print media ads appeared in local newspapers in both English and Spanish. Advertisements containing a link to the survey information and the survey itself were placed for the full time period that the survey was open.
- Stony Brook and its partners launched a comprehensive public relations effort in June 2021 for the duration of Pride Month which provided press in radio, print, and television outlets in both English and Spanish. Coverage was primarily regional with some national attention.
- Direct community outreach conducted by Stony Brook and its partners at Pride events in June 2021; meetings with community stakeholders; and networking and outreach with social media influencers, gay bars, and other community stakeholders.
The information accompanying the survey link explained the significance of the survey and assured potential respondents of anonymity and confidentiality in survey participation. To ensure privacy, the survey did not collect personally identifiable information on individual respondents or their computers (such as IP address), other than what respondents voluntarily provided in the survey questionnaire and what was necessary for administering the survey.
Throughout the survey, other than a few questions to determine eligibility, participants were free to skip any question or end the survey at any time. Respondents were given an option to opt out of sections that might be sensitive or triggering. Contact information for local resources were also provided for more sensitive topics.
In all, a total of 1,150 completed and validated surveys were received during the fielding period between June 1, 2021, and September 30, 2021. Once the fielding period was completed, the surveys were reviewed; any surveys exhibiting inconsistent or implausible response patterns were removed from the analysis.
- Anu Annam, artist and advocate
- Cornell Cooperative Extension of Suffolk County
- Donna B. Riley, Ph.D, LCSW-R
- Gina Caggiano, owner, BTW Bar & Grill, Oceanside
- Economic Opportunity Council of Suffolk (EOC)
- Edie Windsor Healthcare Center
- Entertainer and advocate Annie Manildoo
- Entertainer and advocate Bella Noche
- Entertainer and advocate WorshipHer
- Family & Children’s Association (FCA)
- The Freedman Center for Clinical Social Work
- Grove Hotel and Ice Palace Resort, Fire Island
- OLA of Eastern Long Island
- Pamela Linden, LMSW, Phd, Stony Brook University School of Health Professions
- Planned Parenthood Hudson Peconic
- Long Island Crisis Center – PFY
- Long Island Council of Student Personnel Administrators (LICSPA)
- Sister Mary Beth Moore, Corazon De Maria
- NuBar, Farmingdale
- Patchogue Arts Council
- Ricardo Rodriguez, Millennium Homes
- Riverhead Anti Bias Task Force
- SEPA Mujer
- Southold Anti-Bias Task Force
- Stony Brook Medicine
- Stony Brook Medicine AIDS Center
- Stony Brook Medicine LGBTQ* Committee
- Stony Brook Southampton Hospital
- Stony Brook University Department of Pediatrics
- Stony Brook University Director of Planning & Staff Development/Office of Student Affairs
- Stony Brook University LGBTQ* Services Team
- Stony Brook University School of Health Technology and Management - Center for Community Engagement and Leadership Development
- Sister Margaret Smyth, North Fork Spanish Apostolate
- Stony Brook Medicine Department of Obstetrics, Gynecology and Reproductive Medicine
- Stony Brook University - LGBTQ+ undergraduate and graduate students
- Suffolk County Department of Health
- Suffolk County Legislator – Robert Calarco, Presiding Officer (former)
- Suffolk County Office of Minority Health
- Suffolk County Human Rights Commission – Rosalind Perdomo-Ayala, Chairperson
- Sun River Health
- Transgender Resource Center of Long Island
- Victims Information Bureau of Suffolk (VIBS)
- Women’s Diversity Network
- Youth Enrichment Services
- Nassau and Suffolk community members
Resources
For information on affirming care available through Stony Brook Medicine, visit our SBM LGBTQ* Services page.
DASH Diagnostic, Assessment and Stablization Hub (DASH) offers 24 hour, 7 days a week, community crisis care program with a Mobile Crisis Team for Suffolk residents who struggle with mental health and substance abuse disorders. You can access DASH Services by calling the 24/7 hotline at (631) 952-3333.
If you struggle with self-harm or suicidal thoughts, visit thetrevorproject.org/get-help-now. You can contact the Trevor Project by texting START to 678678 or you can call:
If you would like more information about HIV prevention and treatment services, go to
https://www.stonybrookmedicine.edu/HIV/services/medical.
For information about Stony Brook's PrEP services, please go to http://www.stonybrookmedicine.edu/PrEP.
If you or a loved one are experiencing intimate partner or domestic violence:
The National Human Trafficking Hotline is at (888) 373-7888, or you can text "HELP" or "INFO" to 233733 or visit https://humantraffickinghotline.org
The Sex Workers Project is at https://sexworkersproject.org/resources/