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Abstract

Objective:

This survey examined the experiences of individuals receiving treatment in a large public mental health system during the early months of the COVID-19 pandemic.

Methods:

The survey, conducted between May and June 2020, assessed four domains: impacts on mental health, experiences with telehealth, access to care and resources, and sources and adequacy of support. Descriptive analyses were conducted.

Results:

Of 4,046 respondents, 70% reported increases in their anxiety and stress because of the pandemic. A majority (55%) reported experiencing challenges related to the social determinants of health and functional needs. Most respondents reported that their care went undisrupted, with 92% using telehealth and 90% reporting feeling adequately supported.

Conclusions:

The pandemic substantially affected individuals with mental illness, particularly with regard to mental health related to the social determinants of health and functional needs. However, respondents felt that their mental health care was maintained and that they were adequately supported.

HIGHLIGHTS

Individuals with mental illness were substantially affected by the COVID-19 pandemic, including by facing increases in stress and anxiety as well as challenges related to social determinants of health.
Despite adverse impacts, individuals with mental illness felt that they were receiving adequate support from both formal and informal sources during the pandemic.
The COVID-19 pandemic has caused widespread morbidity, mortality, and marked disruptions in nearly every area of daily life. Social distancing and stay-at-home provisions have required people to limit their in-person interactions. Many patients and providers have been ill or have known someone who died of COVID-19 (1). Economic distress from job loss, business closures, and growing economic inequality has caused considerable stress (2).
New York State (NYS) was an early national hot spot for COVID-19. Governor Cuomo declared a state of emergency in response to the virus on March 7, 2020 (3). The March 22 executive order, “New York State on PAUSE,” closed most nonessential services in NYS; required all nonessential employees to work remotely; and encouraged essential employees, including clinicians, to work remotely to the extent possible (4). Outpatient providers quickly adapted to deliver more telehealth and fewer in-person services (5).
Changes in daily life throughout the pandemic, including disruptions in health care service delivery, have posed particular challenges for individuals with mental illness. Certain mental illnesses are associated with an increased risk of COVID-19 exposure, morbidity, and mortality (6). Research conducted early in the pandemic predicted increases in substance use (7)—especially alcohol use (8)—loneliness, isolation, and domestic abuse (9). People with mental illness are often already economically and socially marginalized and are at disproportionately higher risk for substance use disorders (10) and suicide (11). It is critical to understand the particular impact of the COVID-19 pandemic on the health and well-being of individuals with mental illness, how these individuals have coped with stress, and their use of and satisfaction with mental health services.
Previously published research has focused on the mental health impacts of COVID-19 on the general population (12, 13) and among frontline health workers in particular (14). Riehm and colleagues (15) found higher odds of mental distress in the general population in April and May 2020 compared with March 2020, just prior to the pandemic. Within populations with mental illness, much research has been done on experiences with telehealth (16). A study published early in the pandemic surveyed individuals with mental illness on their anticipated stressors related to the pandemic, finding marked concerns related to the potential worsening of their mental illness, accessing mental health care, and experiencing adverse social determinants of health (17). The current study aimed to expand the size and scope of this research and investigate the experiences of individuals with mental illness during the pandemic in the first epicenter of COVID-19 in the United States.
To better understand the lived experiences of people early in the pandemic, the NYS Office of Mental Health (OMH) conducted a survey to assess the impact of the COVID-19 pandemic on the lives of OMH service recipients and their family members. OMH sought to determine the extent to which service recipients responded to changes in mode and frequency of service delivery, the impact of the pandemic on various social determinants of health (e.g., food security, financial stability, safe housing) and functional needs (e.g., toiletries and clean clothes), and the sources of support respondents leveraged to cope with the pandemic.

Methods

OMH serves over 700,000 individuals per year across the 23 psychiatric centers it operates and the more than 4,500 locally operated programs it regulates and licenses. The OMH Office of Consumer Affairs, in collaboration with the OMH Institute for Program and Policy Innovation, developed the COVID-19 Impact Survey for Recipients of Services and Families in April 2020 (the survey announcement and instrument are available as an online supplement to this report) (18). The survey sampled individuals who obtained mental health services from programs operated, funded, or licensed by OMH. These individuals included children, adolescents, and adults. Respondents were surveyed on topic areas important for identifying actionable input from the population served and their families. These topic areas included the impact of the pandemic on the mental health and well-being of respondents, respondents’ experiences with telehealth, respondents’ access to care and resources, and sources and adequacy of support. Survey items related to demographic characteristics, social determinants of health, and functional needs were based on standardized annual assessments conducted by OMH.
OMH disseminated the survey through consumer advocacy Listservs, trade organizations, peer communities, regional field offices, county mental health authorities, and social media. Responses were collected via the SurveyMonkey platform. Survey data were collected between May 8, 2020, and June 22, 2020. Descriptive statistics on the response data were performed by using SAS, version 9.2. The OMH Institutional Review Board determined that this survey was not human subjects research.

Results

In total, 4,046 recipients of OMH mental health services responded to the survey. Most respondents were female (51%), non-Latinx White (51%), and age 55 or older (37%) (Table 1). Respondents identified marked impacts of COVID-19 on their personal mental health and well-being: 70% of respondents reported some increase in stress or anxiety, and 21% reported greater alcohol or substance use during the early months of the pandemic. Over half of respondents (55%) experienced at least one COVID-19–related challenge involving adverse social determinants of health and challenges with functional needs, including food insecurity (33%), difficulty accessing transportation (32%), employment barriers (32%), and loss of income or employment benefits (31%). Of those respondents who cited experiencing at least one challenge, 50% (N=1,109) reported experiencing two or more.
TABLE 1. Characteristics of individuals with mental illness in New York State (N=4,046), May and June 2020a
CharacteristicN%
Demographic characteristics
Age (years)  
 ≤2442811
 25–3454413
 35–4469217
 45–5487921
 ≥551,47837
Gender  
 Female2,05451
 Male1,78144
 Transgender or gender nonbinary662
Race-ethnicity  
 Non-Hispanic White2,06351
 Non-Hispanic Black93923
 Hispanic70617
 Non-Hispanic Asian or Asian American1253
 Other1053
Regionb  
 Upstate New York1,68942
 Downstate New York2,33358
Mental health impacts
Anxiety/stress symptoms  
 No impact1,12530
 Slight/moderate increase2,08155
 Substantial increase56315
Alcohol and drug use (N=1,643)  
 Decrease1237
 No change1,17972
 Increase34121
Social determinants/barriers (N=4,046)  
 No barriers1,80745
 Experienced barriers2,23955
  Food security74133
  Transportation71432
  Employment71132
  Income/employment benefits69231
  Toiletries/clean clothes67330
  Education44720
  Housing stability33515
Access to care
COVID-19 testing (N=2,671)  
 No barriers1,85169
 Experienced barriers82031
  Lacking knowledge of testing location41551
  Waitlists/transportation33441
 Other719
Personal protective equipment (N=3,637)  
 No barriers2,48868
 Experienced barriers1,14932
  Limited supplies47742
  Cost968
  Other/unspecified65357
General medical health care (N=3,558)  
 Not disrupted/easier to access2,67975
 Significantly disrupted/harder to access87925
Access to medications (N=3,511)  
 No barriers2,88682
 Experienced barriers62518
Use of telehealth (N=3,927)  
 Yes3,60592
 No3228
Comfort with telehealth (N=3,461)  
 Very uncomfortable1926
 Uncomfortable2056
 Neutral64118
 Comfortable1,45942
 Very comfortable96428
Barriers to telehealth (N=263)  
 Not offered telehealth services16061
 No computer5119
 No phone187
 Not enough minutes/data156
 Multiple barriers197
Support
Receiving adequate support (N=3,792)  
 Yes3,40990
 No38310
Sources of support (N=3,408)  
 Providers3,17493
 Family2,16464
 Friends1,56346
 Peer support95228
Use of technology for support (N=3,645)  
 Yes1,93253
 No1,71347
a
Discrepancy in N totals is due to missing/not reported data.
b
Upstate New York includes Western New York, Central New York, and Hudson River regions. Downstate New York includes New York City and Long Island.
Access to personal protective equipment (PPE) and COVID-19 testing were a concern during the early months of the pandemic. Of respondents who reported challenges accessing PPE (32%), more cited limited supplies as the prohibitive factor than those who cited cost. Among those who encountered COVID-19 testing barriers (31%), the most cited barrier was a lack of information regarding testing locations. Access to general medical health care was significantly disrupted for 25% of respondents. While 92% of respondents reported using telehealth, fewer respondents (70% of telehealth users) reported feeling comfortable doing so. Among respondents who reported barriers to using telehealth, 61% reported not being offered telehealth as the main reason.
Despite adverse effects on respondents’ mental health and well-being, as well as considerable disruptions in general medical health care, a large majority of respondents (90%) reported receiving adequate support during the early months of the pandemic. Respondents indicated that a majority of this support came from providers (93%) and family (64%). Just over half of respondents (53%) reported using technology for support. Peers were the least likely to be reported as sources of support (28%).

Discussion

Individuals receiving care in a large public mental health system experienced considerable adverse effects on their mental health and well-being during the spring 2020 COVID-19 surge. These impacts could lead to increased adverse outcomes, including increases in use of acute mental health services as well as self-harm, suicide attempts, deaths by suicide, and accidental overdoses. As communities reopen, more people may be seeking outpatient mental health care, posing challenges for clinics about where to focus their efforts. While evidence from previous crises shows that mental distress decreases as the crisis dissipates, with a majority abating a year after the crisis ended (19), providers and policy makers should be prepared to monitor these trends and respond as needed.
A substantial number of individuals experienced disrupted access to services and care. This finding is not surprising given the extent of the lockdown implemented to manage the pandemic. Efforts to preserve access to care via telehealth appeared to have a marked impact. A majority of respondents indicated that they did not experience barriers in accessing COVID-19 PPE, testing, or health care services, although approximately one-third of the sample experienced barriers. Notably, a majority of respondents reported experiencing COVID-19–related adverse social determinants of health and functional needs challenges, including food insecurity, lack of access to transportation, employment barriers, and loss of income or employment benefits. This finding is concerning given that this population includes many individuals at high risk for poor health outcomes related to the impacts of these social determinants.
Despite these barriers, respondents overwhelmingly felt supported by both formal and informal supports. Much of the support came from providers and family members, underscoring the critical role of informal support for mental health service recipients. Educational material for friends and family of care recipients could serve as resources about where to access care and how best to support loved ones experiencing mental illness. It is notable that fewer respondents reported peers as a source of support, given how extensive the peer services system is in NYS. This finding should be investigated further.
One potential limitation of these data was that the survey was conducted in the early months of the pandemic, and the experiences of individuals with mental illness have changed as the pandemic has progressed. However, these data provide a window into the early phases of a pandemic that can help to understand its immediate impact. Moreover, the number of respondents captured in the survey makes it one of the largest surveys of a public mental health system since the pandemic began. A second potential limitation was the survey distribution method. Because the survey was primarily distributed online, the survey response rate could not be determined; furthermore, there may have been a selection bias, insofar as respondents with Internet access would have been more likely to have had the means to respond to the survey. That said, substantial efforts were made to reach participants without Internet access: OMH conducted outreach to service providers statewide to encourage providers to complete the survey with their patients. Furthermore, the demographic characteristics of the sample were largely consistent with the characteristics of the population receiving services from the NYS public mental health system. Statewide, 52% of OMH service recipients are female, 51% non-Hispanic White, 25% non-Hispanic Black, 22% Hispanic, and 71% between the ages of 21 and 64. Thus, we are confident that the results presented are representative of the population OMH serves as a whole. Last, in retrospect, it would have been beneficial to ask about respondents’ experiences with race and racism during the COVID-19 pandemic and their interplay with the national reckoning with structural racism. It will be critical to assess experiences with racism moving forward.
These data provide important insights into the experiences of individuals with mental illness and the impact of COVID-19 on this population. Further research will analyze disparities in responses on the basis of demographic characteristics.

Conclusions

This survey, one of the largest conducted to date on this population, demonstrated how individuals with mental illness were affected during the early months of the COVID-19 pandemic. The most evident impacts were the reported increases in anxiety and stress as well as challenges related to adverse social determinants of health and functional needs. Accessing PPE and COVID-19 testing were challenging for many respondents at the beginning of the pandemic. Mental health care continued through telehealth, and most respondents felt comfortable with these services. The vast majority of respondents felt adequately supported during the early months of the pandemic. Moving forward, it will be critical to examine differences in these responses on the basis of demographic characteristics, with a particular focus on possible disparities by race-ethnicity, gender, age, and region.

Acknowledgments

The authors thank Riti Pritam, M.A., M.R.P., and Shuo Chen, M.P.H., for their contributions to the analysis of the survey data. Dr. Lewis-Fernández owns stock in Vistagen Therapeutics.

Supplementary Material

File (appi.ps.202100328.ds001.pdf)

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Information & Authors

Information

Published In

Go to Psychiatric Services
Go to Psychiatric Services
Psychiatric Services
Pages: 674 - 678
PubMed: 34587787

History

Received: 3 June 2021
Revision received: 30 July 2021
Accepted: 20 August 2021
Published online: 30 September 2021
Published in print: June 2022

Keywords

  1. Coronavirus/COVID-19
  2. Public health
  3. Patient perceptions

Authors

Details

Ian T. Rodgers, M.P.H. [email protected]
New York State Psychiatric Institute, New York City (Rodgers, Anderson, Cohen, Ehntholt, Smith, Dixon, Lewis-Fernández); New York State Office of Mental Health, Albany (Samaranayake, Feeney, Leckman-Westin, Marinovic, Saake); Nathan S. Kline Institute for Psychiatric Research, Orangeburg, New York (Capobianco, Lekas). Benjamin G. Druss, M.D., M.P.H., served as decision editor during the peer review of this report.
Dhanushki Samaranayake, Ph.D.
New York State Psychiatric Institute, New York City (Rodgers, Anderson, Cohen, Ehntholt, Smith, Dixon, Lewis-Fernández); New York State Office of Mental Health, Albany (Samaranayake, Feeney, Leckman-Westin, Marinovic, Saake); Nathan S. Kline Institute for Psychiatric Research, Orangeburg, New York (Capobianco, Lekas). Benjamin G. Druss, M.D., M.P.H., served as decision editor during the peer review of this report.
Adrienne Anderson, M.P.H.
New York State Psychiatric Institute, New York City (Rodgers, Anderson, Cohen, Ehntholt, Smith, Dixon, Lewis-Fernández); New York State Office of Mental Health, Albany (Samaranayake, Feeney, Leckman-Westin, Marinovic, Saake); Nathan S. Kline Institute for Psychiatric Research, Orangeburg, New York (Capobianco, Lekas). Benjamin G. Druss, M.D., M.P.H., served as decision editor during the peer review of this report.
Linda Capobianco, M.A.
New York State Psychiatric Institute, New York City (Rodgers, Anderson, Cohen, Ehntholt, Smith, Dixon, Lewis-Fernández); New York State Office of Mental Health, Albany (Samaranayake, Feeney, Leckman-Westin, Marinovic, Saake); Nathan S. Kline Institute for Psychiatric Research, Orangeburg, New York (Capobianco, Lekas). Benjamin G. Druss, M.D., M.P.H., served as decision editor during the peer review of this report.
Dana E. Cohen, M.P.A.
New York State Psychiatric Institute, New York City (Rodgers, Anderson, Cohen, Ehntholt, Smith, Dixon, Lewis-Fernández); New York State Office of Mental Health, Albany (Samaranayake, Feeney, Leckman-Westin, Marinovic, Saake); Nathan S. Kline Institute for Psychiatric Research, Orangeburg, New York (Capobianco, Lekas). Benjamin G. Druss, M.D., M.P.H., served as decision editor during the peer review of this report.
Amy Ehntholt, Sc.D.
New York State Psychiatric Institute, New York City (Rodgers, Anderson, Cohen, Ehntholt, Smith, Dixon, Lewis-Fernández); New York State Office of Mental Health, Albany (Samaranayake, Feeney, Leckman-Westin, Marinovic, Saake); Nathan S. Kline Institute for Psychiatric Research, Orangeburg, New York (Capobianco, Lekas). Benjamin G. Druss, M.D., M.P.H., served as decision editor during the peer review of this report.
Suzanne Feeney, M.B.A.
New York State Psychiatric Institute, New York City (Rodgers, Anderson, Cohen, Ehntholt, Smith, Dixon, Lewis-Fernández); New York State Office of Mental Health, Albany (Samaranayake, Feeney, Leckman-Westin, Marinovic, Saake); Nathan S. Kline Institute for Psychiatric Research, Orangeburg, New York (Capobianco, Lekas). Benjamin G. Druss, M.D., M.P.H., served as decision editor during the peer review of this report.
Emily Leckman-Westin, Ph.D.
New York State Psychiatric Institute, New York City (Rodgers, Anderson, Cohen, Ehntholt, Smith, Dixon, Lewis-Fernández); New York State Office of Mental Health, Albany (Samaranayake, Feeney, Leckman-Westin, Marinovic, Saake); Nathan S. Kline Institute for Psychiatric Research, Orangeburg, New York (Capobianco, Lekas). Benjamin G. Druss, M.D., M.P.H., served as decision editor during the peer review of this report.
Sonia Marinovic, B.A.
New York State Psychiatric Institute, New York City (Rodgers, Anderson, Cohen, Ehntholt, Smith, Dixon, Lewis-Fernández); New York State Office of Mental Health, Albany (Samaranayake, Feeney, Leckman-Westin, Marinovic, Saake); Nathan S. Kline Institute for Psychiatric Research, Orangeburg, New York (Capobianco, Lekas). Benjamin G. Druss, M.D., M.P.H., served as decision editor during the peer review of this report.
Thomas E. Smith, M.D.
New York State Psychiatric Institute, New York City (Rodgers, Anderson, Cohen, Ehntholt, Smith, Dixon, Lewis-Fernández); New York State Office of Mental Health, Albany (Samaranayake, Feeney, Leckman-Westin, Marinovic, Saake); Nathan S. Kline Institute for Psychiatric Research, Orangeburg, New York (Capobianco, Lekas). Benjamin G. Druss, M.D., M.P.H., served as decision editor during the peer review of this report.
Lisa B. Dixon, M.D., M.P.H.
New York State Psychiatric Institute, New York City (Rodgers, Anderson, Cohen, Ehntholt, Smith, Dixon, Lewis-Fernández); New York State Office of Mental Health, Albany (Samaranayake, Feeney, Leckman-Westin, Marinovic, Saake); Nathan S. Kline Institute for Psychiatric Research, Orangeburg, New York (Capobianco, Lekas). Benjamin G. Druss, M.D., M.P.H., served as decision editor during the peer review of this report.
Helen-Maria Lekas, Ph.D.
New York State Psychiatric Institute, New York City (Rodgers, Anderson, Cohen, Ehntholt, Smith, Dixon, Lewis-Fernández); New York State Office of Mental Health, Albany (Samaranayake, Feeney, Leckman-Westin, Marinovic, Saake); Nathan S. Kline Institute for Psychiatric Research, Orangeburg, New York (Capobianco, Lekas). Benjamin G. Druss, M.D., M.P.H., served as decision editor during the peer review of this report.
Roberto Lewis-Fernández, M.D.
New York State Psychiatric Institute, New York City (Rodgers, Anderson, Cohen, Ehntholt, Smith, Dixon, Lewis-Fernández); New York State Office of Mental Health, Albany (Samaranayake, Feeney, Leckman-Westin, Marinovic, Saake); Nathan S. Kline Institute for Psychiatric Research, Orangeburg, New York (Capobianco, Lekas). Benjamin G. Druss, M.D., M.P.H., served as decision editor during the peer review of this report.
Amanda Saake, M.S.W.
New York State Psychiatric Institute, New York City (Rodgers, Anderson, Cohen, Ehntholt, Smith, Dixon, Lewis-Fernández); New York State Office of Mental Health, Albany (Samaranayake, Feeney, Leckman-Westin, Marinovic, Saake); Nathan S. Kline Institute for Psychiatric Research, Orangeburg, New York (Capobianco, Lekas). Benjamin G. Druss, M.D., M.P.H., served as decision editor during the peer review of this report.

Notes

Send correspondence to Mr. Rodgers ([email protected]).

Funding Information

The other authors report no financial relationships with commercial interests.

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