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. Author manuscript; available in PMC: 2025 Mar 1.
Published in final edited form as: J Clin Psychol Med Settings. 2023 Oct 7;31(1):143–152. doi: 10.1007/s10880-023-09975-z

Community Teens’ COVID-19 Experience: Implications for Engagement Moving Forward

Colleen Stiles-Shields 1,2, Karen M Reyes 2, Nia Lennan 2, Jim Zhang 3, Joseph Archer 4, Wrenetha A Julion 5, Madeleine U Shalowitz 2,6
PMCID: PMC11174976  NIHMSID: NIHMS1991385  PMID: 37803094

Abstract

Data collected from pediatric primary care settings during the pandemic suggest an increase in internalizing symptoms and disparities in care based upon minoritized identity status(es). To inform care moving forward, the current study characterized the pandemic and related technology usage experiences of teenaged pediatric patients from communities with high hardship indexes. As part of a larger mixed-methods study, 17 teens (Mean age = 15.99 ± .99) and 10 caregivers independently voiced experiences related to the pandemic during remote focus group and interview sessions. Thematic analyses were used to assess qualitative data; descriptive analyses were used to characterize qualitative data. Despite no direct queries about the pandemic, 41% of teens and 40% of caregivers described their lived experiences during the pandemic. Two subthemes emerged within the primary theme of COVID-19: (1) Wellness/Mental Health and (2) Smartphone Use and Utility. Although distress and negative effects were voiced, questionnaire data indicated normative psychosocial functioning for both teen self-report and caregiver proxy report. Informed by the voiced experiences of teens and their caregivers from communities with high hardship indexes, methods for better assessing and managing internalizing symptoms in teen patients are presented. A multi-modal and multi-informant approach that leverages technology to garner information about teens’ experiences and deliver care may help improve the well-being of teens in communities systemically burdened with disparities.

Keywords: Patient experience, COVID-19, Pediatric primary care, Health disparities, Digital mental health

Mental health disorders are among the most common diseases of childhood (Merikangas et al., 2010), yet millions of youth do not receive mental health care (Merikangas et al., 2011; Substance Abuse and Mental Health Services Administration, 2014). Pediatric patients with one or more identities that are marginalized or systemically excluded are the most at risk for not receiving care (Whitney & Peterson, 2019). These patients may be considered as having socially complex needs, facing overlapping adversities [e.g., adverse childhood events (ACEs), pediatric conditions] and/or the experience of systemic oppression for having minoritized identities (e.g., racial, ethnic, gender, and/or sexual minority populations; Bounds et al., 2020). The COVID-19 pandemic exacerbated existing mental health disparities for such pediatric patients and their families (Rothe et al., 2021), as emphasized by the Surgeon General’s Advisory on Youth Mental Health (Murthy, 2021).

Nearly all American youth visit pediatric primary care settings annually (Bloom et al., 2011), providing an opportunity to engage pediatric patients and their families in mental health screening and connecting them to intervention services (Chakawa et al., 2020). Integrated primary care (IPC) teams mobilized quickly to provide remote care to patients at the start and throughout the COVID-19 pandemic (Lin et al., 2020; Menon & Belcher, 2021). However, telehealth data collected during the pandemic in IPC settings indicated both an increase in reports of internalizing symptoms–such as depression and anxiety–and disparities in care access based on racial and ethnic identity (Chakawa et al., 2021). As such, it is possible that pediatric patients with socially complex needs had increased mental health symptoms, but were less likely to receive care.

Use of remote delivery mechanisms [e.g., telehealth, digital mental health tools (DMH)] are likely to continue and may increase beyond the pandemic (Clipper, 2020), pioneering a way to meet the increased need to monitor and intervene on internalizing symptoms (Khanna & Carper, 2021). Therefore, identifying how these tools can better serve pediatric patients with socially complex needs at their annual primary care visits is critical to avoid exacerbating existing disparities or creating new ones (Figueroa & Aguilera, 2020; Lattie et al., 2022; Nouri et al., 2020). To that end, an understanding of patient- and caregiver-voiced concerns is strengthened using complementary quantitative and qualitative designs (Grigoropoulou & Small, 2022), particularly from those whose communities endured the greatest disparities from the pandemic and who will benefit from systems-level changes to serve pediatric patients (Crooks et al., 2022).

The purpose of the current study was to characterize the pandemic and related technology usage experiences of teenaged pediatric patients from communities with high hardship indexes (Lange-Maia et al., 2018), using a multi-method and multi-informant approach. Teens (ages 12–17) were selected as the focus of this study, as they are (1) a high-risk group for the onset of comorbid psychological symptoms and disorders (Merikangas et al., 2010), with risks exacerbated during the pandemic (Murthy, 2021); (2) likely engaging with digital tools autonomously and/or with limited caregiver input; and (3) unlikely to have access to DMH developed in research settings (Psihogios et al., 2022). The initial purpose of this line of inquiry was to better understand the use of smartphones and views toward DMH by pediatric patients with socially complex needs (Bounds et al., 2020); however, participants repeatedly initiated conversations about the impacts of the pandemic and subsequent technology use, underscoring the relevance of these findings to teens and their caregivers and, thus, becoming the focus of this study.

Methods

Participants

In compliance with the University Institutional Review Board approval, informed assent/consent was obtained from all participants via teleconsent and e-consenting procedures (López et al., 2018). Teen participants with Spanish-speaking guardians had parental consent conducted in Spanish by a qualified bilingual speaker (second author). Recruitment efforts were focused within pediatric primary care clinics and school-based health centers serving communities in Chicago, Illinois, USA, which experience some of the highest disparities and hardship indexes in the city (Lange-Maia et al., 2018). Participants meeting the following criteria were eligible for inclusion: (1) either a teen between 12 and 17 years of age or a parent/guardian of a child 12–17 years of age; (2) residents of a Chicago West or South Side Community (i.e., verified through zip code as being members of communities with identified high hardship indexes; Lange-Maia et al., 2018); (3) have access to and used a smartphone within the previous week; (4) able to speak and read in English; and (5) not actively suicidal or meeting criteria for a psychiatric disorder that would make participation inappropriate or dangerous (e.g., active psychosis). Participants were compensated for their time with a $15 gift card.

Procedure

As part of a larger mixed-methods study (Stiles-Shields et al., 2022), focus groups and interviews were conducted using a HIPAA-compliant Zoom account. Participants were provided secure, password-protected links to join the appropriate session. Focus group sessions were 45–60 min in length and had no more than five participants at a time. Teen sessions were conducted separately from parent/caregiver sessions. To support confidentiality, participants were asked to use only their first names during the focus groups and could also elect to complete an individual interview in lieu of focus group participation. Participants could also opt to not turn their camera on, if preferred. Sessions were led by research staff who identify as Black, Indigenous, and People of Color (BIPOC) or mixed race and who were supervised by a licensed psychologist. All groups were asked a standard set of questions (see Supplementary Materials), adapted from a previous study assessing technology use in homeless youth (Adkins et al., 2017). All focus group sessions were audio recorded for transcription and data analyses.

Measures

All self-report assessments were administered and managed via the REDCap (Research Electronic Data Capture) electronic data capture tools (Harris et al., 2009). Of note, demographic and treatment history and data from the Media and Technology Usage and Attitudes Scale (MTUAS), both described below, have been previously presented for this sample (Stiles-Shields et al., 2022).

Demographics and Treatment History

Participants were asked to report demographic characteristics (e.g., age, gender, race) about themselves and, for caregiver participants, about their teen. Participants were also queried about previous psychiatric and/or medical diagnoses and their subsequent treatment history, as well as their five most used health and wellness apps.

Psychosocial Characteristics

COVID-19 Exposure and Family Impact Scale

The COVID-19 Exposure and Family Impact Scale (CEFIS; Kazak et al., 2021) and CEFIS, Adolescent and Young Adult Version (CEFIS-AYA; Schwartz et al., 2022) are brief self-report measures assessing the impact of the COVID-19 pandemic on families of youth and adolescents and young adults (AYA) with health conditions. The CEFIS and CEFIS-AYA both yield (1) an Exposure score; (2) an Impact score [positively valenced scores (i.e., > 2.5) indicate more Impact, negatively valenced scores (< 2.5) indicate less Impact]; (3) a Distress score; and (4) an open-ended question to detail information not captured by the previous items. Higher scores indicate more intensity of a given domain. The CEFIS and CEFIS-AYA Exposure (α = .68, α = .84), Impact (α = .95, α = .71), and family-level Distress subscales (α = .62) demonstrated acceptable reliability for the current sample.

Kessler Psychological Distress Scale

The Kessler Psychological Distress Scale (K10), a 10-item self-report questionnaire measuring distress (Kessler et al., 2003), was administered to caregiver participants only. Higher scores indicate a higher likelihood of a psychological disorder. The K10 demonstrated acceptable reliability for the current sample (α = .94).

Patient-Reported Outcomes Measurement Information System

The Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric self-report and parent proxy forms were administered to assess Anxiety and Depressive Symptoms (Irwin et al., 2010), Global Health (Forrest et al., 2016), and Physical and Psychological Stress Experiences (Bevans et al., 2018). The PROMIS measures yielded T-Scores, with a score of 50 being the mean and higher or lower scores indicating more or less of the assessed domain (e.g., anxiety). The PROMIS measures demonstrated acceptable reliability for the pediatric (αs = .75) and caregiver reports (αs = .87–.96).

Technology Usage

Media and Technology Usage and Attitudes Scale

The Media and Technology Usage and Attitudes Scale (MTUAS), a self-report measure assessing media and technology use (Rosen et al., 2013), was administered to all participants. The usage subscales (44 items) include smartphone usage, general social media usage, internet searching, emailing, media sharing, text messaging, video gaming, online friendships, Facebook/online friendships, phone calling, and TV viewing. The attitudes subscales (16 items) include positive attitudes toward technology, anxiety about being without technology or dependence on technology, negative attitudes toward technology, and preference for task switching. The MTUAS usage and attitudes subscales demonstrated acceptable reliability for the teen (αs = .60–.90) and caregiver reports (αs = .67–.98). The MTUAS data for this sample have been previously reported elsewhere (Stiles-Shields et al., 2022), but is included in the current study to provide context about the sample’s self-reported technology use.

Data Analysis

The primary mixed-methods study generated a tremendous amount of data (Stiles-Shields et al., 2022), with insights into the lived experiences and mHealth preferences of teens from high hardship communities (Lange-Maia et al., 2018). Specifically, qualitative data from teens and caregivers included themes of (1) health and wellness concerns, (2) barriers, (3) use of smartphones, (4) impacts of smartphones, (5) opinions/suggestions for mHealth, and (6) COVID-19 Impacts (Stiles-Shields et al., 2022). The current study includes the full sample of originally included participants and focused on pandemic-related experiences and the use of technology within the pandemic. While the primary study was conducted during the pandemic (early 2021), the experiences of study participants were not directly queried during the focus groups. Therefore, the qualitative data reported below were the result of statements that teen and caregiver participants wished to independently share. COVID-19-related data were prevalent enough to emerge as an independent theme through the thematic analysis conducted for the primary study and described immediately below.

Qualitative data from the focus group and interview sessions were analyzed using a thematic analysis (Braun & Clarke, 2006). Coding followed an inductive methodology such that the data drove coding, as opposed to theory (Patton, 1990). The first through fifth authors worked as coders, with each session initially coded by two independent coders. Candidate themes were then created via group consensus. Upon the completion of data collection, group consensus was used to create final themes and subthemes. Quantitative data from the self-report questionnaires were examined via descriptive analyses and correlations were used to explore associations between CEFIS and CEFIS-AYA subscales.

Results

Participants

A total of eight focus groups and seven individual interviews were completed, with the number and type of session determined by participant availability and preference. The sample consisted of 17 teens (82.4% cisgender female) and 10 caregivers (90% cisgender female). Eight parent–child dyads participated, with the remaining sample members participating independently (i.e., a teen participating without their caregiver also participating or vice versa). Table 1 displays the demographic characteristics.

Table 1.

Demographic and psychosocial characteristics, n (%)

Teen (n = 17) Caregiver (n = 10)
Age, M (SD, range) 15.88 (.99; 14–17) 41.00 (7.96; 28–54)
Cisgender male 3 (17.6%) 1 (9%)
Cisgender female 14 (82.4%) 10 (91%)
Race, n (%)
 American Indian or Alaska Native 1 (5.95) –
 Black or African American 14 (82.4%) 7 (63.6%)
 Native Hawaiian or Pacific Islander 1 (5.9%) 2 (18.2%)
 White – 2 (18.2%)
 Prefer not to answer 1 (5.9%) –
Ethnicity, n (%)
 Hispanic/Latinx 4 (23.5%) 1 (9.1%)
 Non-Hispanic/Latinx 12 (70.6%) 9 (81.8%)
 Prefer not to answer 1 (5.9%) –
Sexual orientation, n (%)
 Heterosexual/straight 13 (76.5%) 9 (81.8%)
 Bisexual or pansexual 4 (23.5%) 1 (9.1%)
Highest level of education, n (%)
 Some high school 17 (100%) –
 High school degree – 1 (9.1%)
 Some college – 4 (36.4%)
 College degree – 2 (18.2%)
 Business or technical school degree – 1 (9.1%)
 Attended graduate or professional school – 1 (9.1%)
 Graduate or professional school degree – 1 (9.1%)
Employment status, n (%)
 Employed, full time – 7 (63.6%)
 Employed, part time 5 (29.4%) 2 (18.2%)
 Not working, looking for work – 1 (9.1%)
 Student, part time – 2 (18.2%)
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M mean, SD standard deviation

Behavioral Health History and Wellness App Use

Table 2 displays the diagnostic and treatment history reported by caregivers (family history, teen history) and teens (self-reported history). While not directly queried about app use for managing their medical conditions (e.g., asthma), teens reported using the following apps for health management and wellness (apps are listed as they were described by teens): Adidas, Apple Health, Chess, Fitbit, Fitness on Apple Watch, GetFit, Google Fit, Lose It, MapMyFitness, MyChart, Pacer, and Planet Fitness. Caregivers reported personal use of the following apps: DaFit, Flat Tummy, Health App, MyFitness, and WalkFit. To manage mental health, teens reported using Headspace, Shine, and a drawing app (i.e., for distraction). Caregivers did not report the use of any mental health-focused apps.

Table 2.

Diagnostic and treatment history, n (%)

Teen (n = 17) Caregiver (n = 10)
Family medical history
 Allergies (food)/(seasonal, dust, pet) NA 1 (10.0%)/6 (60.0%)
 Asthma NA 2 (20.0%)
 Diabetes NA 2 (20.0%)
 Overweight/obesity NA 3 (30.0%)
 Sickle cell disease NA 1 (10.0%)
Teen medical history
 Allergies (food)/(seasonal, dust, pet) 3 (17.6%) 1 (10.0%)/3 (30.0%)
 Asthma 5 (29.4%) 3 (30.0%)
 Overweight/obesity 1 (5.9%) –
 Sickle cell disease – 1 (10.0%)
 Prefer not to answer 5 (29.4%) –
Medical treatment associated with teen diagnoses
 Prescribed medication 3 (17.6%) 4 (40.0%)
 Emergency room visit 1 (5.9%) 1 (10.0%)
 Hospitalization – 1 (10.0%)
Family psychiatric history
 Anxiety disorder NA 3 (30.0%)
 ADHD NA 2 (20.0%)
 Depressive disorder NA 3 (30.0%)
 Prefer not to answer NA 1 (10.0%)
Teen psychiatric history
 Anxiety disorder 2 (11.8%) 1 (10.0%)
 ADHD 2 (11.8%) 1 (10.0%)
 Depressive disorder 2 (11.8%) –
 Prefer not to answer 7 (41.2%) 2 (20.0%)
Teen psychiatric treatment history
 Medication 1 (5.9%) –
 Therapy (psychologist, social worker) 6 (35.3%) 3 (30.0%)
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NA not assessed

COVID-19 Impacts

On the CEFIS, Caregiver-reported family Distress (5.80 ± 2.50) was positively correlated with COVID Exposure (r = .84, p = .003) and COVID Impact (r = .85, p = .007). Caregivers reported an average Exposure score of 8.40 ± 3.24, which is in line with the average number of COVID-19-related events reported by the caregiver sample for initial validation of the measure (i.e., M = 8.71; Kazak et al., 2021), and the average Impact score was positively valenced (i.e., < 2.5; less impact) at 2.29 ± .71. For teen participants, there was no evidence to suggest associations among the CEFIS subscales (ps > .05). Teens reported an average Exposure score of 6.79 ± 3.24, which is lower than the average number of COVID-19-related events reported by the AYA sample for initial validation of the measure (i.e., M = 9.08; Schwartz et al., 2022). The average Impact score was positively valenced (i.e., < 2.5; less impact) at 2.36 ± .54. Teen participants reported moderate Distress on a 1–10 scale, scoring on average 4.88 ± 2.36.

Despite no direct queries about the pandemic, 41% of teen and 40% of caregiver participants independently and repeatedly described the pandemic when asked about their lived experience with health and wellness, smartphone use, and mHealth uses. Within the primary theme of COVID-19 Impacts that resulted from thematic analysis, two subthemes emerged: Wellness/Mental Health and Smartphone Use and Utility.

Wellness/Mental Health

Negative Effects

Nearly half of the caregiver participants (40%; n = 4) and one teen participant (5.9%) directly stated that the pandemic has negatively impacted the wellness and/or mental health of the teens in their respective communities. In discussing the mental health concerns of their community teens, a 14-year-old stated: “Maybe depression, especially with COVID. These sudden things that are happening that we’re experiencing in the world. I think that it can get overwhelming and sometimes makes us feel lonely.” Caregiver concerns included (1) impacts of social distancing [e.g., “I know with so much going on with COVID and stuff, their mental health is taking a hit. They’re not being outside and they’re not being as active. They’re not being as social.” (Caregiver of a 17 year old)]; (2) noting that the pandemic has compounded existing stressors: “Stress and depressed—with this COVID thing going on and like she say, all the killin’—it’s stressful on the teens, not just everybody—including me. …I’m just ready for all this to be over with ‘cause it is—it’s stressful” (Caregiver of a 16 year old); and (3) frustration and concern about the uncertainties that the pandemic has raised for their teens:

When I say fear, I mean it’s like people fear what they don’t understand. Right now, …no one understands what’s going on. …She’s the type of person who likes to know this, this, this, and so I can do this, this, this. To be in the situation where she doesn’t know, she doesn’t know if the schools is gonna open back up for high school. She doesn’t know if she’s gonna have to get a COVID test. She doesn’t know. I think that’s what I mean when I say fear, that unknown of not knowing and not understanding what’s going on (Caregiver of a 17 year old).

Finally, caregivers noted that the stressors are likely tied to the onset of mental health conditions for their teens [e.g., “I’m sure COVID and the isolation has a lot to do with it. Yeah, we’re definitely seeing an up rise in teens with depression. And anxiety, they’re doing anxiety as well.” (Caregiver of a 15 year old)].

Promisingly, self-reported quantitative data did not strongly echo the voiced negative effects of the pandemic on teens’ behavioral health status. Indeed, teen and caregiver responses on the PROMIS measures fell within the normative range for teens’ Pediatric Global Health (teens = 42.81 ± 8.38; caregiver = 51.25 ± 8.50), Physical Stress Experiences (teens = 58.96 ± 8.05; caregiver = 53.30 ± 11.68), Psychological Stress Experiences (teens = 58.44 ± 7.95; caregiver = 50.09 ± 11.43), Pediatric Anxiety (teens = 49.60 ± 9.76; caregiver = 43.23 ± 10.77), and Pediatric Depressive Symptoms (teens = 51.52 ± 11.82; caregiver = 44.42 ± 9.66). Caregiver personal psychological distress was moderate, with an average K10 score of 17.30 (SD = 8.33).

Additional Support

In response to the pandemic, teens noted increased support from caregivers and school personnel and expressed openness to adults checking in about their mental health. For example, one teen countered the experience of a co-participant who described feelings of pressure and aggression from parents prior to and throughout the pandemic:

I feel that my home is my safe haven. I feel that before the pandemic, my parents, they gave freedom, but it seemed like they gave me more freedom now. It seem like my parents now are buying more snacks and junk food and all that. I noticed before the pandemic they weren’t doin’ all that. I feel that they buy that so I won’t have to say, “Oh, well, I need to go to the store to go get this and go get that.” It seem like they just make sure that they have everything that I need, everything that I want already at my hand. I just feel so safe bein’ at home. Maybe I shouldn’t feel that way, but that’s how I really feel. When I’m at home, I just feel so comfortable and relaxed. I feel like this is the best that I could ever be. (Teen, 14)

Similar to the parents of the teen mentioned above, youth reported that teachers also worked to improve the well-being of community teens in response to the pandemic. A 14 year old noted that her primary teacher “was mainly focused on the ones that was really stressed, that was just so mad because of the pandemic, we had to stop going to school. She was really putting a lotta emphasis on helping the ones that really did not know how to cope with being at home.” Teens also described teachers sending surveys to check in on their well-being, with follow-up resources based on how they responded. For example, a 15 year old stated: “Yeah, we get the surveys too, they tend to ask a lot. …They wanted to know how everybody felt, what everybody was going through since we were not around them. They just tried to be there a lot more knowing that we was virtual.” For the teens who did not note extra support, there appeared to be an openness to adults–including pediatricians–checking in on mental health concerns:

Well, I haven’t gone to the doctor’s because of COVID. It’s been a while. Before COVID, I didn’t feel, like, the need for those questions, but with COVID and these things suddenly happening, I did start feeling a bit, you know, down. And I would have liked for someone to ask me if I was okay, especially if it came from a doctor that I trust. (Teen, 14)

In response to pandemic-related stressors, teens voiced an increased openness toward screening and support from trusted adults, including parents, teachers, and pediatricians.

Smartphone Use and Utility

Increased smartphone use was voiced by all teen and caregiver participants via qualitative report. MTUAS responses, which assessed current use, indicated average smartphone usage of “Several Times a Day” for both teens (7.56 ± 1.38; a score of seven ties to the Likert scale response of “Several Times a Day”) and caregivers (7.76 ± 2.41). Additionally, average MTUAS usage responses indicated participants engaged in text messaging “Once an Hour” (teens: 8.47 ± 1.29; caregivers: 8.10 ± 1.89) and social media engagement “Several Times a Day” for teens (7.00 ± 1.99) and “Several Times a Week” for caregivers (5.34 ± 2.44). Remote education/eLearning was noted as a key contributor to loosening and/or removing household norms around smartphone usage. For example:

Since the COVID, my mom and dad let me use my phone more because I have to do my assignments virtual and then also, I have to look up a lot of things online because it’s not like I’m in school, I can use the library and whatever. So basically some of the things that I was doing at school, I have to do all of it at home. We also have a home computer, but a lotta times when I’m in my room I just use my smartphone. (Teen, 14)

Caregivers also noted that remote education often required their teen to use a smartphone during the week. While caregivers voiced multiple concerns over increased smartphone use, they also expressed appreciation that this smartphone use sometimes connected their children to clear information about the pandemic. A caregiver of a 14-year-old stated: “Yeah, my daughter’s usin’ [an app] through the school—through the virtual. Yeah. It’s a mandatory class… It’s really like a general health class, and it’s educating them and also, it gave them the breakdown of the three vaccinations of COVID and just it details—it basically was tryin’ to educate the children so that they’ll really understand what COVID-19 really mean.”

Despite increased use of smartphones during the pandemic, teens rated, on average, that they neither agree nor disagree about having positive (MTUAS M = 3.77 ± .71) or negative attitudes toward technology (3.10 ± .81). Teens noted that the pandemic necessitated their use of technology to connect beyond schoolwork [e.g., “Before the pandemic I guess that I wasn’t really using a smartphone. It seemed like I was with my friends—I was actually with my friends. Now with the COVID, it’s like how we talk to one another” (teen, 14)]. However, teens did not endorse feelings of dependency on technology (MTUAS 3.35 ± 1.02).

Discussion

As part of a larger mixed-methods investigation, the current study presented the unsolicited voiced experiences and technology use of teens during the COVID-19 pandemic. While early 2021 was situated in the midst of the pandemic for many American teens, other relevant societal experiences, such as the recognition of multiple injustices and subsequent advocacy (e.g., Black Lives Matter movement) were also ongoing. The sample that provided data within these contexts was comprised of teens and caregivers of teens from communities facing high behavioral health disparities (Lange-Maia et al., 2018); and most of the participants identified with a minoritized identity. The participants described impacts of the pandemic on teens’ mental health and wellness, as well as increased uses of smartphones and technology by both teens and their caregivers. Participants provided relevant teen and family medical and mental health histories and voiced impacts from the COVID-19 pandemic. Even so, the average responses on measures of distress and broader health outcomes for teens were in the normative range. Further, the number of COVID-19-related experiences was in line with previously reported rates of exposures for AYA and their families (Kazak et al., 2021; Schwartz et al., 2022).

The mixed-methods nature of the current study promoted the ability to detect nuances in the experience of teens during the pandemic. For example, average reports on quantitative measures were in the normative range, yet qualitative feedback allowed teens and caregivers to voice their experiences with the pandemic in ways that were not represented in the self-report measures. Further, the primary objective of the larger research study was not focused on teens’ experiences during the pandemic (Stiles-Shields et al., 2022); and yet, the emergence of this theme in the data underscored the importance of this topic to the teens and their caregivers. Recent research findings have echoed the long-standing need for research to provide safe and supportive spaces that serve minoritized pediatric patients and promote opportunities to voice their needs (Crooks et al., 2022; Galán et al., 2021). Doing so requires recognizing that many of these pediatric patients experience the world with socially complex needs and intersectional identities (e.g., identifying as Black, young, queer, and female), impacting individuals and communities within relevant historical and current contexts (Crooks et al., 2021; Stern et al., 2021). To understand the mechanisms driving pediatric health disparities and to directly and systemically address inequities in access and care (Valrie et al., 2020), mixed-methods approaches and flexibility in focus that responds to the voiced needs and wants of families of pediatric patients are imperative.

The current findings also have implications for integrated primary care (IPC) and broader pediatric psychology and Family Medicine settings and their ability to target pediatric health disparities (Shahidullah et al., 2023). The differences between quantitative and qualitative reports indicate that teen patients’ mental health or distress in the contexts of multiple experiences in recent years (e.g., pandemic, social justice/Black Lives Matter movements) might not be reflected by scores on commonly administered questionnaires (e.g., administration of the Patient Health Questionnaire 2 or 9 at primary care appointments; Anand et al., 2021). As such, alternative mechanisms for garnering information on their well-being are warranted. Fortunately, teen participants voiced an increased openness to trusted adults in their lives checking in about how they are feeling, specifically noting caregivers, teachers, and pediatricians among this group. Further, they valued receiving resources through digital communication (e.g., school portal). As such, multiple recommendations may be made to better assess and manage internalizing symptoms (Chakawa et al., 2021). First, providers should make open-ended inquiries about how teen pediatric patients are feeling emotionally during medical appointments, regardless of scores on self-report questionnaires. Second, providers can garner multi-informant input about teen mental health to improve care (Navarro et al., 2020). Indeed, this recommendation supports a higher likelihood of identifying teens in need of services through the use of multi-generational approaches and collaborations with community sectors (McCabe et al., 2020). Additionally, the increased use and comfort with technology described in the current study might support the use of computerized adaptive tests, such as the Kiddie-Computerized Adaptive Tests (K-CAT), which yield a report informed by both pediatric and caregiver proxy reports (Gibbons et al., 2019). Implementation of such measures may support multi-informant reports whether caregivers attend medical appointments or not (i.e., can be completed remotely, asynchronously; Bounds et al., 2022). Third, providers can develop and disseminate mental health psychoeducation and resources via electronic communication. Indeed, caregivers noted and appreciated that their teens received credible health information via electronic communications from their schools during the pandemic. However, given recent phenomena such as “zoom fatigue,” families should be queried frequently about whether they would prefer resources and communications electronically vs. other mechanisms (e.g., phone call, printed pamphlet, face to face). Finally, providers can advocate for thorough and consistent assessments of systemic barriers to care to inform impactful changes in medical settings (see calls to action by McCabe et al., 2020; Mulchan et al., 2021; Shahidullah et al., 2023).

The current findings should be considered in light of specific limitations. First, the semi-structured focus group questions were based on previous work with marginalized youth and technology (Adkins et al., 2017). An advisory board of community teens and caregivers would ideally have helped to construct the structured questions used in the focus groups to best reflect their perspectives, interests, and needs from the outset. Second, the participants were recruited remotely from the West and South Side Communities of Chicago within the context of the pandemic. It is unclear how their experiences generalize to their peers (e.g., novel factors such as “zoom fatigue” are poorly understood in terms of recruitment). Third, while the guardian consent process for teen participants was designed to complete informed consent in both English and Spanish, caregiver participation was limited to English speaking caregivers. This is a strong limitation of a study aimed at promoting the voices and experiences of teens and their caregivers from marginalized communities and populations. Future research must include methodologies that support linguistic diversity and accessibility to avoid perpetuating exclusionary research practices that overwhelmingly exclude non-English-speaking participants from pediatric research (Chen et al., 2023). Fourth, medical and psychiatric history data were collected via self-report; it is unclear how these data might differ from a medical chart review. Finally, in regards to generalizability: (1) this is a small sample size, which might not reflect the larger population of teens from communities with high hardship indexes; (2) this sample identified primarily as female; and (3) most participants completed their quantitative data questionnaires prior to the focus groups. Given discrepancies between the quantitative and qualitative reports, it is unclear if questionnaire responses would have been influenced by focus group participation.

The current mixed-methods study identified teen and caregiver-reported experiences pertinent to the pandemic, including wellness/mental health and smartphone use and utility. Within the context of previously identified increases in pediatric internalizing disorders and systemic burdens disproportionately impacting minoritized patients in IPC settings (Chakawa et al., 2021), the current findings offer a framework for better assessing and managing internalizing symptoms in teen patients. A multi-modal and multi-informant approach that leverages the use of technology to garner information about teens’ experiences and deliver care may help improve the well-being of teens in marginalized communities. Future research should continue to amplify and support the voiced experiences and needs of teens and their caregivers to inform how pediatric psychologists in IPC settings and beyond can address pediatric mental health disparities.

Supplementary Material

Supplementary Interview Questions

Acknowledgements

The authors thank Rush’s Pediatric Primary Care and Community-Based Practices, comprising the School-Based Health Centers (SBHCs) and the Adolescent Family Center (AFC), Rush Education and Career Hub (REACH), and our Westside Community partners, without whom this research would not have been possible.

Funding

Research reported in this publication was supported in part by fellowships from the Cohn Family Foundation and the National Institute of Mental Health of the National Institutes of Health (K08 MH125069). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Footnotes

Conflict of interest Colleen Stiles-Shields, Karen M. Reyes, Nia Lennan, Jim Zhang, Joseph Archer, Wrenetha A. Julion, and Madeleine U. Shalowitz have no financial or other conflicts of interest to report.

Ethical Approval All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent Informed consent was obtained from all individual participants included in the study.

Supplementary Information The online version contains supplementary material available at https://doi.org/10.1007/s10880-023-09975-z.

Publisher's Disclaimer: Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

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Supplementary Materials

Supplementary Interview Questions
NIHMS1991385-supplement-Supplementary_Interview_Questions.docx (23.9KB, docx)

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