November 2015 INSTITUTE FOR URBAN HEALTH FELLOWS LIBRARY City Voices: New Yorkers on Health Mental Health: Context Matters Maya Scherer, MPH | Elisa Fisher, MSW, MPH | Tongtan Chantarat, MPH, CLC Yan Li, PhD | Lindsey Realmuto, MPH | Sharon A. Abbott, PhD Dona Green, MBA, MA | Linda Weiss, PhD Mental Health: Context Matters CITY VOICES This data brief is part of a series—“City Voices: New Yorkers on Health”—developed to give a voice to the health needs of people in the city who are oftentimes invisible or unheard. “Mental Health: Context Matters” does this by highlighting informative personal experiences of primarily low-income New Yorkers in the Bronx, Brooklyn, Manhattan, and Queens. IN NEARLY HALF THE MENTAL HEALTH FOCUS GROUPS, PARTICIPANTS SAID MENTAL HEALTH WAS AMONG THE MOST PRESSING HEALTH ISSUES IN THEIR NEIGHBORHOOD. This collection of voices provides a direct glimpse inside the health issues and needs of New Yorkers to help inform the many decisions that are being made on a daily basis by community service and health care providers, as well as policy makers. For more insights and perspectives directly from New Yorkers, visit NYAM.org to download the full “City Voices: New Yorkers on Health” series of reports. NYAM.org “(There is) a tremendous amount of depression. People are dealing with all kinds of conflicts, all kinds of issues. They don’t have jobs. They don’t have insurance. They don’t have other kinds of things.” – FOCUS GROUP PARTICIPANT, QUEENS Table of Contents 1Abstract 3Overview 4Findings 13Conclusions 15 Design & Methodology 17References NYAM.org ABSTRACT This data brief is part of a series—“City Voices: New Yorkers on Health”— developed to give a voice to the health needs of people in the city who are oftentimes invisible or unheard. “Mental Health: Context Matters” does this by highlighting informative personal experiences of primarily low-income New Yorkers in the Bronx, Brooklyn, Manhattan, and Queens. Depression, anxiety and psychological distress are recognized as common conditions among residents of low-income New York City neighborhoods, yet there is insufficient information on residents’ perceptions of underlying causes, consequences, or perceived access to treatment. In 2014, a mixed-method community needs assessment was conducted including 2,875 surveys with primarily low-income New Yorkers in four boroughs; 81 focus groups; and 41 key informant interviews. Survey and focus group participants were recruited using a purposeful sampling strategy, with intentional overrepresentation from those engaged with social service programs or with identified health needs. Data focused on factors in the community that might facilitate or impede health, physical and behavioral health concerns, service utilization, and access to care. Twenty-six percent of survey respondents reported current mental health issues, including depression or anxiety. Focus group findings suggest that community members commonly attribute poor mental health to social, economic, and environmental factors, including poverty, lack of affordable housing, unemployment, immigration experiences, and aging. Mental health was also linked to physical health and was reported to impact self-care and to exacerbate other medical conditions. Focus group participants and key informants often reported that they saw significant value in the use of mental health services. However, care was often difficult to access because of long wait times, insurance restrictions, and persistent social stigma. Mental Health: Context Matters 1 The common contention, on the part of community members, that contextual factors are associated with poor mental health suggests a need to incorporate a broader determinants perspective within mental health services. Findings also indicate participants perceived a need for greater awareness and education to reduce the stigma associated with mental health issues. Current New York State programs to better integrate behavioral and supportive services with primary care, as well as New York City initiatives that more closely link mental health providers and community-based organizations, represent important efforts to potentially address these needs. NYAM.org 2 OVERVIEW Depression and psychological distress are prevalent in low-income communities. This trend is particularly notable in urban areas, where research has shown low- income residents to be more than twice as likely to be depressed as their wealthier counterparts.1 Research also shows that specific populations, such as immigrants and older adults, face unique stressors that can exacerbate mental health issues. For immigrants, these stressors stem from factors that include the loss of extended social and familial networks and exposure to urban poverty.2 Older adults, particularly those who are living in poverty,3 are vulnerable to mental health problems in part due to their increased isolation and deteriorating health.4 This report, part of a series describing findings from a comprehensive community needs assessment (CNA) conducted in four New York City (NYC) boroughs, focuses on mental health, the factors contributing to poor mental health, and access to services, as described by CNA participants. Mental Health: Context Matters 3 FINDINGS Participants reported that mental health issues—including self-perceived depression, anxiety, and stress—were among the most prevalent and worrisome health problems in their communities. Just over one-quarter (26%) of survey respondents reported currently experiencing mental health issues, including depression or anxiety, which may in part reflect the survey sampling strategy. In close to half of the focus groups, participants noted that mental health was among the most pressing health issues in their neighborhood. CNA participants connected mental health to physical health–some identified stress or depression as a risk factor of disease while others felt the physical ailments they suffered were in part responsible for mental health problems. Stress brings up the blood sugar rates, diabetes, so it makes diabetes sky high. (Focus group participant, Queens) I believe that there is a direct correlation for mental health because when I was diagnosed [with diabetes], I was physically drained, and I was going through a depression, and I knew nothing about what was going on with my body. I felt like I was dying. I had no energy, and I didn’t know why. So it’s really possible that [diabetes] does have an adverse effect with your mental health. (Focus group participant, Manhattan) Conditions associated with poverty Participants reported that high rates of poverty and the conditions associated with living in low-income communities substantially contributed to poor mental health. The financial struggle to feed families, difficulty finding or keeping affordable housing, poor employment prospects, and the pervasiveness of violence were cited as challenges that directly contribute to high rates of anxiety and depression within their communities. NYAM.org 4 Poor people, you know, are so stressed out with just having a roof over their heads, having food on their plates, being able to get their child in school. And, you know, there’s just so many challenges for people - for poor people to have to deal with. People being homeless. The domestic violence is just unbelievable. (Social services provider, Bronx) [There is] a tremendous amount of depression. People are dealing with all kinds of conflicts, all kinds of issues. They don’t have jobs. They don’t have insurance. They don’t have other kinds of things. (Focus group participant, Queens) Housing issues were cited as a significant source of stress for low-income New Yorkers participating in the CNA. Concerns about housing costs, stability (particularly in gentrifying neighborhoods), crowding and maintenance were repeatedly described. It may be a mental health issue, but when you start to do further evaluation and assessment you come to find they are dealing with other issues of poverty or housing, unemployment or underemployment or other issues around violence in the home or in the community. (Mental health provider, Brooklyn) It’s the psychological effects of immigrating from another country, being cramped in an apartment with people you actually don’t know and having to share intimate times. So it creates a lot of issues, especially in adolescents. (Health Service Provider, Queens) Mental Health: Context Matters 5 “We really look at our kids from a trauma lens because of the communities many of the children live in and their histories, there is a trauma component that then triggers a lot of other things. Living in a poor community you have poor quality schools, you have a lack of safety in your streets. The air quality is bad.” – SOCIAL SERVICES PROVIDER, MANHATTAN NYAM.org 6 Unemployment was also frequently mentioned as a contributor to anxiety and depression. Participants discussed the stress of losing or looking for employment, as well as the negative impact of too much idle time. The amount of economic pressure: when you lose your job then there goes the resources and increased pressure. It breaks you down. If you are a husband, there goes your manhood. Maybe there is no strong family foundation to talk to about it, no one close to tell them they are going through this, so they have to carry that. It eats them up inside; they become mentally ill, short- tempered. It goes to another level rapidly. (Focus group participant, Brooklyn) Well, for one reason a lot of people is out of work. That’s one of the main reasons [there are mental health problems] and there are a lot of people that’s on public assistance. ... They wanna earn their own way but they look and they look and you know, none of them are qualified. Even ones that are qualified can’t find work and it’s stressful … after a while, people get discouraged and they say to heck with it … they give up and that’s what causes a lot of stress. (Focus group participant, Bronx) In some neighborhoods, participants also linked mental health issues to the trauma and fear associated with living in a violent community, which they connected to their experience of poverty. People in the Bronx suffer from trauma just because of the areas that we live in. You walk down a block on a Saturday afternoon and nothing’s going on until you turn a corner and get shot. (Focus group participant, Bronx) There’s serious stress associated with having unstable housing. And also, we have tons of mold in my house, and my doctor says that a lot of my sinus problems is related to the fact that there’s like three inches of mold under the walls. (Immigrant advocate, Brooklyn) Mental Health: Context Matters 7 Children these days are exposed to all kinds of things, alcoholics, drug abusers, domestic violence from their own families or strangers so I think you go to school with all this stress and all this pressure and all these things in your head and the little things that touch you, you just like explode so that’s one of the reasons we think children are like acting this way and acting up. (Focus group participant) Conditions associated with aging Depression was commonly linked to aging. CNA participants cited social isolation among many older adults, a diminishing sense of purpose, and physical or cognitive decline as primary contributors. These conditions may be exacerbated in some older populations, such as LGBTQ and older immigrants, who may be more isolated and distrustful of the service delivery system to start. I care for my 90-year-old grandmother. She has COPD and I think she’s touching on a mental health issue which is called depression. I don’t think she is aware that she is falling into this depression, but I think her inability to get out into the community as much as she should be able to is affecting her. (Focus group participant, Bronx) You talk about depression, right? What I found for myself, I found by staying home, as I stopped working and staying home, I got very depressed. I don’t want to go nowhere, I don’t want to pick up the phone. (Older adult focus group participant, Manhattan) LGBT older people have experienced so many forms of discrimination that it really has for many of them affected their trust in systems. And so you have people who are much more in need of services and much less likely to avail themselves of those services. (Service provider, Manhattan) NYAM.org 8 Conditions associated with immigration Participants who were born outside of the United States repeatedly described stress and depression related to immigration. In addition to the inherent difficulty of leaving one’s home country, participants discussed frustrating professional and financial setbacks, feelings of isolation—in part due to limited English language skills—and stress associated with the immigration process. Immigration is a big headache. You have to deal with immigration issues, your life is full of stress, and this leads to depression. “When will the papers come, when am I going to go to India, when will I have kids?” If you have kids there is no one else to take care of them. Your elderly parents don’t want to come here. If there is no one home, you cannot go to work. You pay your babysitter ten dollars; when you go to work you get ten dollars. (Focus group participant, Queens) Engagement in care Participants recognized the value of obtaining mental health care, although their perception of the availability of resources and services varied and existing services were often perceived as poorly matched to need. Several reported that available options failed to provide the appropriate level or type of care, others were frustrated by the lack of competency with respect to language, culture or other special needs, and still others by lack of integration. Mental health services ... I’m just glad they’re there, but I wish there were more. There’s always a wait list. (Health care provider, Manhattan) We’re still separating medical and behavioral health. And for our population, you can’t have one without the other. And so, getting, even within the hospital, within the hospital system–getting the behavioral and the medical–there’s literally sometimes doors that are not crossed. And that’s a crying shame. (Housing advocate, Manhattan) Mental Health: Context Matters 9 “From day one in the United States there is mental pressure. There is depression and frustration because my experiences, qualifications and education from back home is not compatible with the demands here. There is no job satisfaction. We aspire to do well in this country but the realization of not being able to is frustrating.” – FOCUS GROUP PARTICIPANT, QUEENS 10 NYAM.org In addition to provider-related barriers to seeking mental health care, participants discussed personal barriers. They reported that many people are unable to admit to or recognize their own needs, particularly if they came from cultures or communities that did not readily acknowledge mental health issues and/or the value of mental health services. Stigma also arose as a major barrier to accessing mental health services, particularly among minority populations. Participants explained how mental health problems were associated with labels like “crazy” and were rarely discussed openly. Perceptions of stigma resulted in resistance to seeking mental health services, which was viewed by many as problematic. I think there’s a lot of stigma across the board about getting services. Some things that we hear are even the parents who understand that there are young people that could really benefit from getting treatment and services, it’s like, “Let’s just keep it in the family. We’ll go ahead and we’ll find a place and just don’t let anyone else know.” (Social service provider, Manhattan) Mental health still has a huge stigma with the Latino community and with the Asian community as well. It’s starting to change a little, but it’s always been–if you’re labeled mentally ill or disabled, it’s equated to incapacitated. So there is a huge stigma that mental illness equals crazy. (Focus group participant, Manhattan) People don’t tell because they fear that they will be ridiculed and talked about. We should encourage people to get help or the problem will get worse. (Focus group participant, Queens) Mental Health: Context Matters 11 “There aren’t a ton of good psychologists or psychiatrists or social workers–maybe some more social workers–but not psychologists or psychiatrists that speak Spanish and can do talk therapy in Spanish.” – IMMIGRANT RIGHTS ADVOCATE, QUEENS NYAM.org 12 CONCLUSION According to CNA participants, mental health conditions—including self-perceived depression, anxiety, and stress—are prevalent and problematic within low-income New York City communities. Participants often attributed poor mental health to the social conditions associated with poverty, such as financial insecurity, costly and substandard housing, exposure to violence, and unemployment. They also reported that specific populations, including immigrants and older adults, face unique challenges that contribute to high levels of stress, anxiety and depression. For immigrants, mental health outcomes were related to the challenges inherent in the experience of immigration, including professional and financial setbacks and the difficulty of dealing with the U.S. immigration system. Among older adults, social isolation and the physical and cognitive decline associated with aging were important contributors to poor mental health. Participants felt that those struggling with mental health conditions would benefit from treatment, although they noted several barriers to care, including limited availability of adequate services, an inability to recognize the need for help, and a general lack of trust in providers. Stigma around mental health was also commonly identified as a barrier to seeking treatment. Participants explained that many fear they will be labeled “crazy” if they seek counseling or are diagnosed with a mental health condition. They described a need for greater awareness and education related to mental health to reduce the stigma associated with mental health issues. Participants reported that there is a need for increased accessibility of care as well as culturally competent and linguistically appropriate mental health services. Citing a link between social conditions and mental health, several recommended a more integrated and comprehensive approach to health care and to supportive services that address not only mental and physical health, but also the underlying social factors that contribute to well-being. Several initiatives are underway at both the city and state level that seek to better integrate behavioral and physical health care, and to support communities in Mental Health: Context Matters 13 preventing and treating behavioral health needs. These initiatives include Advanced Primary Care and Patient Centered Medical Home models, Health Homes, behavioral and physical health managed care plans, Delivery System Reform Incentive Payment (DSRIP) Program projects, and the NYS Prevention Agenda. At the City level, ThriveNYC, a comprehensive roadmap for promoting mental health in NYC is being released in November 2015. These state and citywide efforts represent promising advances toward mental health services that are more responsive to community needs, more accessible, and may reduce stigma-related barriers by lowering the threshold to services and normalizing treatment. In addition, addressing the structural causes of poverty and the conditions associated will also be an essential component of efforts to reduce mental health disparities faced by low-income New Yorkers. This collection of voices provides a direct glimpse inside the health issues and needs of New Yorkers to help inform the many decisions that are being made on a daily basis by community service and health care providers, as well as policy makers. For more insights and perspectives directly from New Yorkers, visit NYAM.org to download the full “City Voices: New Yorkers on Health” series of reports. NYAM.org 14 DESIGN & METHODOLOGY In 2014, a mixed-method community needs assessment (CNA) was conducted, including 2,875 surveys with primarily low-income New Yorkers in four boroughs, 81 focus groups, and 41 key informant interviews. Participants were recruited using a purposeful sampling strategy, with intentional overrepresentation from those engaged with social service programs or with identified health needs, including needs related to mental and behavioral health. Data focused on factors in the community that might facilitate or impede health, physical and behavioral health concerns, service utilization, and access to care.1 The themes discussed in this report reflect the most salient mental health concerns described by CNA participants in response to questions focusing on physical and mental health, as well as community needs more generally. The views presented in this publication are those of the authors and not necessarily those of The New York Academy of Medicine, or its Trustees, Officers or Staff. Mental Health: Context Matters 15 Acknowledgements We are sincerely grateful to focus group participants for their time and for sharing their personal experiences. We would also like to thank the key informants, health care providers, and other partners who were involved in participant recruitment and provided insights on mental health. We would like to particularly express our gratitude to those organizations that provided venues for the focus groups. Authors Maya Scherer, MPH Project Director, Center for Evaluation and Applied Research, The New York Academy of Medicine Elisa Fisher, MSW, MPH Program Manager, Center for Health Innovation,The New York Academy of Medicine Tongtan Chantarat, MPH, CLC Senior Research Analyst, Center for Evaluation and Applied Research, The New York Academy of Medicine Yan Li, PhD Research Scientist, Center for Health Innovation, The New York Academy of Medicine Lindsey Realmuto, MPH Project Director, Center for Evaluation and Applied Research, The New York Academy of Medicine Sharon A. Abbott, PhD Assistant Director of Strategic Program Development, Division of Corporate Planning Services NYC Health and Hospitals Corporation Dona Green, MBA, MA Chief Operating Officer, Queens Hospital Center for the NYC Health and Hospitals Corporation Linda Weiss, PhD Director, Center for Evaluation and Applied Research, The New York Academy of Medicine NYAM.org 16 References 1 Galea, S, Ahern, J, Nandi, A, Tracy, M., Beard, J, & Vlahov, D. Urban neighborhood poverty and the incidence of depression in a population-based cohort study. Annals of Epidemiology. 2007; 17(3): 171-179. 2 Pumariega, AJ, Rothe, E & Pumariega, JB. Mental health of immigrants and refugees. Community Mental Health Journal. 2005; 41(5): 581-97. 3 Everson-Rose, SA, Skarupski, KA, Barnes, LL, Beck, T, Evans, DA, & de Leon, CFM. Neighborhood socioeconomic conditions are associated with psychosocial functioning in older black and white adults. Health & Place. (2011); 17(3): 793-800. 4 Heikkinen RL, Kauppinen M. Depressive symptoms in late life: a 10-year follow-up. Arch Gerontol Geriatr. (2004); 38(3): 239-50. Mental Health: Context Matters 17 About the Academy The New York Academy of Medicine advances solutions that promote the health and well-being of people in cities worldwide. Established in 1847, The New York Academy of Medicine continues to address the health challenges facing New York City and the world’s rapidly growing urban populations. We accomplish this through our Institute for Urban Health, home of interdisciplinary research, evaluation, policy and program initiatives; our world class historical medical library and its public programming in history, the humanities and the arts; and our Fellows program, a network of more than 2,000 experts elected by their peers from across the professions affecting health. Our current priorities are INSTITUTE FOR URBAN HEALTH healthy aging, disease prevention, and eliminating health disparities. 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