Impact of COVID-19 Mitigation Efforts on Adults With Serious Mental Illness: A Patient-Centered Perspective (2024)

Participants

After obtaining approval from the University of Maryland and George Washington University Institutional Review Boards, we recruited 20 adult patients hospitalized on a voluntary inpatient psychiatric unit in Washington, DC, during the COVID-19 pandemic between September and November 2020. The patients on the unit are predominantly African-American, have Medicaid, and receive outpatient care through the public mental health system. The Washington, DC, region has had some of the strictest COVID-19 restrictions in the country: many nonessential businesses have been required to telework, and public libraries ceased indoor operations for extended periods (McCann, 2020). Because of the urgent need for preliminary data, we enrolled patients from an inpatient psychiatric unit as part of a purposive sampling strategy (Palinkas et al., 2015; Vindrola-Padros et al., 2020). Individuals hospitalized on inpatient psychiatric units typically have higher levels of unmet needs than those who do not require hospitalization (Ådnanes et al., 2020).

There have been few qualitative studies performed by conducting in-depth interviews on inpatient psychiatric units (Awenat et al., 2018); however, previous studies have found that patients hospitalized for acute psychiatric conditions are able to provide informed consent for research (Hickman et al., 2011). Patients were excluded if they lacked the capacity to consent for research or if their inpatient psychiatrist was concerned that a 1-hour interview on the subject matter would put them at risk for psychiatric deterioration. Given the vulnerability of the patient population, eligible participants were notified by the interviewer that enrollment in the study would not yield any preferential treatment or clinical advantages. Before providing written consent, patients were required to successfully complete a consent quiz to ensure that they understood the study procedures and potential risks and benefits. All participants were offered the option of having their interview transcript and study manuscript sent to them.

Data Collection

Minimally structured interviews were conducted in-person by a member of the research team (I. B.) who does not provide patient care on the psychiatric unit. Interviews ranged from 20 to 80 minutes. Participants were asked to describe their experiences living and obtaining health and social services during the COVID-19 pandemic. Because of the novel nature of the subject matter, the interview guide was crafted broadly to give participants the opportunity to decide what they were interested in discussing. The interviewer used prompts to help participants describe the pandemic's impact on their day-to-day activities, housing, access to food, employment, finances, transportation, childcare, mental health services, physical health services, and substance use services.

The interviews were conducted in-person on the inpatient psychiatric unit when there was a trough in new COVID-19 infections in the region. All patients on the psychiatric unit had a negative COVID-19 test before admission. During the interview, the interviewer and the interviewee both wore surgical masks and sat 6 ft apart. The interviewer also wore a face shield after a change in hospital policy.

All interviews were audio-recorded. All audio recordings were transcribed using Temi, an automated audio-to-text transcription program (Temi, 2020). The interviewer checked the transcripts for accuracy against the audio recordings before data analysis.

Data Analysis and Reporting

To develop the initial codebook, three members of the research team (I. B., N. D., and A. A.) reviewed five transcripts independently and then met to develop an initial coding structure using a thematic analysis approach (Braun and Clarke, 2006). This approach aims to bring meaning to qualitative data through the identification of summary themes and categories, and to emphasize the description of important themes over theory building (Thomas, 2006). After the initial codebook was developed, the three coders independently coded the remaining transcripts and met periodically via video conferencing to discuss newly coded transcripts. During each meeting, team members noted any new developments related to the themes and subthemes (Nowell et al., 2017). Inductive coding procedures were used to identify new themes (Fereday and Muir-Cochrane, 2006). Transcripts were reexamined iteratively in light of new and emerging themes, and differences were reconciled by consensus. Qualitative coding was tracked in Microsoft Excel.

We report the data using qualitative descriptors and numbers to illustrate the frequency of responses. As this study aims to provide an early understanding of the availability and quality of mental health and social services, we believe that numbers provide a helpful way to understand the diversity of experiences and opinions across this group and to highlight potential patterns (Maxwell, 2010). However, even if an experience has only been reported by a small number of participants, it does not mean that it is not important. Alternatively, if an experience is commonly reported by the study participants, it does not infer that similar frequencies would be seen in any group of individuals outside the participants of this study (Pyett, 2003).

Participant Demographics

The participants in the study ranged from 21 to 71 years of age (Table ​(Table1).1). The majority (75%) of participants self-identified as non-Hispanic Black. Fifty-five percent reported being disabled or retired, and 35% reported being unemployed. Seven participants reported experiencing homelessness; all experienced homelessness before the pandemic. Five participants reported not having a personal device.

The majority (13) of participants had at least one established outpatient mental health provider before hospitalization, typically through community mental health clinics. The remaining seven reported not being connected with a care team. Four reported a recent lapse in mental health care due to a lack of provider availability, lack of insurance, lack of identification, moving from another region in the country, and/or dropping out of treatment. The remaining three reported not receiving or not seeking recent outpatient mental health treatment.

Attitudes Toward Social Distancing Policies

The participants had three main reactions to physical distancing policies: no impact or improvement, sadness, and frustration, with some noting a combination of sadness and frustration.

Five participants described pandemic-related distancing policies as not affecting their lives in any way or potentially improving their lives. Those unaffected by physical distancing policies either already spent most of their time at home or were able to continue their regular activities with the addition of a mask. The one participant who described being positively impacted by physical distancing policies noted fewer opportunities to use substances.

Eight participants described sadness related to not seeing friends or loved ones. One participant reported losing touch with family members for multiple months due to library closures and losing their regular access to the internet. Eight described sadness related to not having meaningful daily activities, including going to mental health care appointments, support group meetings, stores, restaurants, gyms, and church services.

“You can't do anything. It's affecting me going out and getting fresh air. Cause I'm sick. I'm not sick sick but you know what I mean? I try to call my friends here and there, but to get my mind to stop racing, you can't do anything. You're stuck in the house and you're just stuck.”

“I would go [to my mental health clinic] twice a week and sometimes three times…I liked getting dressed and I liked walking up there. I liked walking home. It was a routine. And, now that it's at home, you can be in your underwear and no one would know. It's just not the same thing. I like having things to do during the day.”

Six participants reported frustration with increased difficulty accessing essential government services during the pandemic, including benefit offices and the courts. Four reported being unable to access an essential form of identification, which prevented them from receiving other necessary services, including housing, health insurance, outpatient mental health treatment, or unemployment assistance. The cessation of in-person operations at the social security office also impeded one participant's ability to apply for disability and another's termination of benefits appeal.

“I know that it is hard to balance lives with the economy and moving on, but how are people going to live if they cannot get the resources that they need? People are going to start failing in other ways. They need to open government offices up. They need to start putting Plexiglass up and letting services resume… I can't see my kids because the supervised visitation center is closed because of COVID. Why can't I do supervised visits with a mask on? Why is the court closed, but we can all go to restaurants?”

Four participants reported frustration with the health care system for limiting their access to care, including reduced numbers of beds at substance use and eating disorder treatment facilities and no longer being able to self-present to freestanding psychiatric hospitals for inpatient admission due to the facility's inability to rapidly test for COVID-19. Another four participants reported frustration related to a decrease in quality and volume of homeless housing during the pandemic. Two participants reported previously staying at homeless shelters that closed as a result of COVID-19 outbreaks and inability to comply with physical distancing requirements.

“All these places that homeless people and people in drug recovery depend on are closed. People in drug recovery cannot find a place to go. [The rehab unit] has been packed. There are no beds. More people are going into [rehab] because there are no other services available and they are there for longer because there is nowhere for them to go. Homeless people are really affected. There are more people on the street and there is no place to shower. Beds in shelters get booked up quick.”

Attitudes Toward Mental Health Treatment During the Pandemic

Four participants reported continuing with one or more in-person outpatient mental health providers during the pandemic. These participants reported wearing masks and complying with social distancing requirements at their appointments.

Eleven participants reported that one or more of their established mental health providers transitioned exclusively to telemedicine during the pandemic. None of these participants reported receiving telemedicine before the pandemic. Of the 11 who reported a transition to telemedicine, 5 reported being able to transition to telemental health care without any significant difficulty.

“They were shut down, so I would call my therapist, my psychiatrist, and talk to her over the phone. And then if I needed a refill, she would call into the pharmacy, put in a refill for me to go pick up the prescription. It's the same that it always is, just that we would only communicate on phone.”

The other six reported significant difficulty with telemental health (Table ​(Table2).2). Two reported not having cell phones and thus not being able to connect with their providers. The other four described difficulty engaging with their providers. They described telemental health services as poorer quality (shorter appointments, less comprehensive assessments), less personal, and less productive due to more frequent distractions, including intrusions from family members and push notifications on cell phone devices. Some mental health clinics experienced changes in staffing, and two participants found it more difficult to create relationships with new providers through telemedicine. Although not identified as a major issue, three participants expressed difficulty finding a private place at their homes or jobs to participate in their telemedicine visits.

Of the nine that had their outpatient mental health appointments via telehealth (excluding the two participants who could no longer access mental health care due to lack of a personal device), only three reported receiving their care through video conferencing. The other six reported phone appointments without a video component. One participant described using a telephone because they could not correctly set up the video conferencing software. The other five said video conferencing had not been offered. All six reported having video conferencing capabilities (e.g., smartphones or computers). Of note, many study participants reported video conferencing with their non–mental health providers (e.g., primary care physician) without technological difficulties during the pandemic.

Care and Social Service Coordination

A majority of participants described being able to navigate the new health and social service systems that have rapidly arisen during the pandemic; some did this independently (using their skills to navigate new/existing challenges), and others had support from family and/or providers. A proportion of participants did not experience any pandemic challenges that required navigation; their disability checks are automatically deposited in their bank account, their Supplemental Nutritional Assistance Program benefits automatically load on to a card, and their mental health clinic continued in-person operations. Most participants reported no difficulty shopping online, filling out applications online, or scheduling appointments online. One participant described reaching out to their local councilmember to find out what services were available for seniors during the pandemic, and they were provided with a gamut.

Many described health and social service providers quickly adapting services to meet the needs of their clients. Those who rely on soup kitchens described operations seamlessly moving outside without any service gaps. Those who sought services through the municipality's department of health services described short wait times on the phone and receiving in-person support. A number of participants reported that their health care providers implemented new care coordination strategies to bridge potential gaps caused by the pandemic, including weekly phone calls, medication delivery, and mask delivery.

However, five participants described significant difficulty obtaining health care and other necessary services during the pandemic and not having any or sufficient assistance from care providers or family members to bridge this gap (Table ​(Table3).3). Four of these participants reported experiencing homelessness and not having a cell phone. Before the pandemic, this group described either showing up in-person to social service agencies to complete applications or using library computers. One participant described walking into mental health clinics for medication refills. Although these participants all reported struggling to meet their needs before the pandemic, they all described increased difficulty as a result of the pandemic. In addition, four of the five participants reported not having a necessary form of identification and needing new social services that require identification.

Seven participants reported experiencing homelessness. All were working with the housing office to obtain long-term housing and reported frustration with how long the process was taking. Their struggle to obtain stable housing began before the pandemic, but many voiced an intensified need for housing as a result of COVID. They described the difficulties of being homeless during a pandemic as the patchwork of formal and informal services that support individuals experiencing homelessness has eroded. All of these participants identified the mayor's most important task to improve lives during the second surge of the pandemic as housing the homeless. Two homeless participants spent 2 weeks in quarantine hotels; they spoke highly of their experiences and wished a similar program could be established for long-term housing. Four participants noted that one positive impact of the pandemic has been the suspension of city bus riding fees, which has made it easier to obtain resources.

Policy Implications

In March 2020, Medicare and many state Medicaid programs began reimbursing mental health providers for audio-only mental health appointments at the same rate as in-person visits. Although this policy may have expanded access to telemental health to individuals without smart phones or other personal devices with cameras, it may have also hindered the dissemination of audio-visual telemental health care (Center for Medicare and Medicaid Services, 2020). Policymakers should consider how to encourage providers to adopt video telemedicine technologies while also considering strategies to expand digital technologies to low-income Americans.

A valid form of identification is a prerequisite for obtaining a job, housing, or benefits. The Social Security Administration and the Department of Motor Vehicles have both significantly reduced in-person operations (Social Security Administration, 2020; Washington D.C. Department of Motor Vehicles, 2020). New strategies need to be adopted to reduce barriers to obtaining identification while mitigating the spread of COVID-19. These may include phone appointments or use of drive-thru or walk-up windows.

Housing is a critical component of mental health management (O'Campo et al., 2016). With travel restrictions in place, hotel rooms are often empty (Krishnan et al., 2020). The pandemic has also prompted many people to move out of high-cost living in cities, leading to high apartment vacancy rates (Warnock, 2020). The pandemic is presenting cities with unique opportunities to reimagine low-income housing and identify permanent housing for individuals with SMI. States and local municipalities may be able to buy vacant hotels and convert them into long-term homeless housing (Bolstad, 2020).

This study highlights that internet and (especially smart) cell phone access is an essential requirement for accessing health care and other social services and should thus be considered a human right (Howell and West, 2016). The federal Lifeline program, a program administered by the Federal Communications Commission to help low-income Americans obtain free or low-cost cell phones, is an absolutely critical public service (Lifeline Program for Low-Income Consumers, 2012). Although a number of study participants reported obtaining cell phones through this program, others reported losing government-provided phones or not being able to obtain them due to lack of stable address or identification. Additional efforts must be made to expand this program and ensure that outreach efforts are successful at identifying those with greatest need. Efforts must also be made to expand public Wi-Fi via outdoor hotspots.

Limitations

This is a single-site study with a small sample size, and the findings are not generalizable. In addition, the research team was not able to use any data collection methods to triangulate the findings (Nowell et al., 2017). This study was designed to rapidly generate preliminary evidence that can be used to design larger-scale inquiries into service gaps that have occurred for individuals with SMI during the COVID-19 pandemic (Vindrola-Padros et al., 2020). This study encourages more targeted research on the impact of pandemics on individuals with SMI; important issues include the effectiveness of audio-only telemental health, navigating the transition from inpatient psychiatry to outpatient telemental health, and cellphone ownership, internet access, and identification among individuals with SMI.

A few participants had active psychosis, had disorganized thought processes, or were poor historians. For them, the prompts were used to guide them back to describing how the COVID-19 pandemic has impacted their ability to receive mental health and other social services. Although the questions were not always fully answered or addressed, all of these participants shared important aspects of their experiences during the pandemic.

Lastly, we did not validate any of the information provided by study participants by checking their medical records or speaking with people who know them closely, such as their friends, families, or health care providers. It is possible that study participants minimized hardships they have endured and barriers in obtaining services during the pandemic because of lack of trust with the interviewer, feeling that the interviewer could not provide any assistance, or disorganized thoughts (Bixo et al., 2019).

Dr Chen is supported by a grant from the National Institute on Minority Health and Health Disparities (R01MD011523). She is also supported by 1R01AG062315-01A1 from the National Institute of Aging.

This study has not previously been submitted to any journals.

This study went through rigorous institutional review board approval processes at the University of Maryland College Park and George Washington University. All participants signed written informed consent after being determined to have capacity to consent to participate by an attending psychiatrist and passing a consent quiz.

The authors declare no conflict of interest.

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