The Impact of COVID-19 on Mental Health and Healthcare in Youth with Chronic Physical Illness and Their Families

Abstract

The COVID-19 pandemic disproportionately impacted youth with chronic physical illness (CPI) and their caregivers. Emerging research aimed at understanding the impacts of the pandemic on this population is predominantly quantitative, lacking qualitative insights. This study used a qualitative approach to examine the experiences of COVID-19 among youth with CPI and their families, exploring how the pandemic impacted their mental health and use of mental health services. Using a constructivist paradigm and a phenomenological approach, semi-structured interviews were conducted with youth with CPI (n = 8) and their primary caregiver (n = 13) between March 2021 and May 2021. Thematic analysis was used to identify three key themes: (1) mental health impact on youth, (2) caregiver mental health declines, and (3) variability in the experiences of mental healthcare. The findings highlight the heightened depression, anxiety, and stress among youth with CPI and their caregivers, exacerbated by loneliness, uncertainty, and social restrictions, while also revealing that virtual mental healthcare was perceived as less effective than in-person care, which was valued for its human connection, privacy, and comfort. These results emphasize the need for improved, comprehensive mental healthcare and the adoption of family-centred care models to strengthen caregiver–youth relationships and better integrate physical and mental healthcare to improve health outcomes for this population.

1. Introduction

The COVID-19 pandemic has generated unprecedented social, physical, educational, and psychological disruptions on individual and societal levels, exposing and exacerbating systemic inequities and weaknesses across sectors responding to the pandemic [1]. These detrimental effects appear to disproportionately impact vulnerable populations, including youth with chronic physical illness (CPI) and their families [1]. A CPI refers to a long-term health condition that persists for one year or more, often impacting daily functioning and requiring ongoing medical management, monitoring, and treatment [2]. Common examples in pediatric populations include asthma, epilepsy, diabetes, and juvenile arthritis. The burden of school closures, social isolation, disrupted daily routines, limited access and availability to psychosocial supports, and reduced access to rehabilitation and healthcare services further complicated daily activities and created new challenges for this population during the pandemic [3]. Youth with CPI frequently experience psychosocial and emotional burdens due to their health challenges and often have reduced quality of life and poorer social, educational, and employment outcomes compared to youth without CPI [4,5]. Experiencing a CPI in childhood increases the risk of poor mental health, suicide attempts, substance misuse, and multimorbidity (co-occurring chronic physical and mental health conditions) [6,7]. Higher psychopathology scores have been identified among youth with CPI during the first wave of the pandemic [8,9,10]. Youth with respiratory or immune conditions were found to experience greater vulnerability and susceptibility to COVID-19, generating increased fear and anxiety around the virus and its health effects [11,12]. Youth with CPI also reported greater concern about COVID-19 and elevated anxiety symptoms during the pandemic compared to their peers without illness [13,14].

Additionally, Durcan et al. [13] reported elevated anxiety and depression among caregivers of youth participants with rheumatological conditions compared to caregivers of youth without. Caregivers of youth with CPI typically encounter higher stress levels due to a more demanding caregiver role, and the COVID-19 pandemic has increased caregiver distress and anxiety [15]. Various studies have reported increased feelings of stress, anxiety, and exhaustion among caregivers of youth with CPI during the pandemic, as well as disintegrated support networks, increased role overload, and caregiver burnout [15,16,17,18,19]. The deterioration of caregiver mental health is concerning as it directly impacts child mental health, hinders caregiving responsibilities, reduces empathetic care, and creates strain among family relationships [1,16]. Poor caregiver mental health is especially problematic during precarious times like the COVID-19 pandemic, where the complex care needs of youth with CPI may be intensified [1].

Significant disruptions to chronic disease care also occurred during the pandemic, including delayed or cancelled consultations, reduced prevention practices, medication renewal disruptions, and delays in access to essential medical supplies, undermining care quality and delivery [20,21,22,23,24]. Concurrently, fear and anxiety around contracting COVID-19 led some individuals with CPI to avoid seeking medical care, increasing the risk of medical complications [21,22,23,24,25]. Mental health services were also disrupted, including decreased access to preventive services, staff shortages, breakdowns in care continuity and comprehensiveness, and disruptions to counselling, psychotherapy, and harm reduction and emergency interventions [26,27,28,29,30]. Reduced access to healthcare services immensely impacted caregivers and youth with CPI, who access healthcare services more frequently compared to their healthy peers and needed additional support during the pandemic [6,31,32,33,34,35,36]. The provision of primary and mental health services made a rapid shift from in-person consultations to virtual and telehealth services. While some studies describe virtual healthcare services as convenient, comfortable, accessible, and affordable [37,38,39], others highlight issues including greater distractions and interruptions, technological issues, inability to access services due to the absence of internet or devices, privacy concerns, and lack of emotional and human connection [40,41,42].

While there exists emerging research aimed at understanding the impacts of the COVID-19 pandemic on caregivers and youth with CPI, there are gaps in the literature. Available research is primarily quantitative, and while it contributes substantial knowledge on the change in average patterns in this population, it lacks depth in capturing the unique perspectives, stories, feelings, and beliefs of youth with CPI and their families. Qualitative data are needed to generate a nuanced depiction of the impact of COVID-19 and its related countermeasures in order to contextualize existing quantitative data. Additionally, there is a scarcity of research on mental healthcare provision and experiences during the pandemic among youth and their caregivers with CPI. Understanding the experiences of mental healthcare from their perspective can help improve the delivery and efficiency of healthcare services in the future for this population. Third, there is limited understanding of how COVID-19 experiences differ between youth with CPI and their caregivers. This knowledge is essential to address the mental health needs of both groups and inform models of family-centred care that are responsive to the priorities, needs, and values of families. To address these gaps, this study used a qualitative approach to examine perceptions and experiences of COVID-19 among youth with CPI and their families, exploring how the pandemic and its related countermeasures impacted their mental health and use of mental health services. Importantly, these experiences are situated within the broader sociopolitical and healthcare context of the third wave of the COVID-19 pandemic in Canada (February 2021–June 2021) [43], a period marked by ongoing lockdowns, reduced in-person healthcare access, and considerable uncertainty for families navigating chronic illness management. Variability in provincial policy responses and public health messaging further shaped the degree of disruption experienced, contributing to inconsistent access to essential supports and intensifying psychological, social, and caregiving burdens already experienced by families of youth with CPI. As such, anchoring the experiences of youth and caregivers within this specific temporal and geographic context is critical to accurately interpret and reflect the true lived experiences of this population during this precarious time.

2. Materials and Methods

2.1. Participants and Recruitment

Participants are from the Multimorbidity in Children and Youth Across the Life-course (MY LIFE) study, an ongoing longitudinal study of youth with CPI and their primary caregiver, which has been described previously [44,45]. Families were recruited from outpatient clinics at a pediatric hospital in Canada, from August 2017 to November 2019 [45]. Youth were eligible to participate if they were aged 2–16 years at enrollment, diagnosed by a health professional with a CPI, and had a caregiver who could communicate in English [45]. Families that were in active follow-up (188 families; 71.4%) were invited to participate in a COVID-19 mixed-methods sub-study. In total, 161 (85.6%) consented to participate in the sub-study and 147 (78.2%) completed quantitative data collection; 13 families (13 caregivers and 8 youth) additionally participated in the qualitative component [45]. All participants provided informed consent. This study was approved by the University of Waterloo Human Research Ethics Board (#31010) and Hamilton Integrated Research Ethics Board (#2797).

Quantitative findings from the COVID-19 sub-study have been published [4,34]. For this qualitative investigation, families were purposively sampled (by child age, sex, and CPI) among those participating in the sub-study who agreed to be contacted about a qualitative interview. Interested caregivers and youth aged ≥ 13 years were invited to partake in a virtual interview (i.e., by phone or video meeting) with the study coordinator. MY LIFE data from the Mini International Neuropsychiatric Interview for Children and Adolescents (MINI-KID) was used to identify mental health conditions present among youth participants. The MINI-KID is a structured diagnostic interview used to assess mental health conditions in children and adolescents [46]. The MINI-KID is aligned with the Diagnostic and Statistical Manual of Mental Disorders, 5th edition, and the International Statistical Classification of Diseases and Related Health Problems, 10th revision.

2.2. Design

This study utilized a constructivist paradigm and a phenomenological approach to understand the lived experiences of people living in the COVID-19 pandemic [47,48]. Participants completed semi-structured interviews between March 2021 and May 2021. Open-ended questions were designed to encourage elaboration, discussion, and broad exploration into various social and health system-related factors beyond those considered in the interview guide. The interviews asked participants to reflect on their current situation, both in relation to their mental health during the COVID-19 pandemic and their perceptions of the services they received, as well as any challenges faced accessing/using services. Interviews took approximately one hour, were recorded, and transcribed verbatim. See Appendix A for the caregiver interview guide and Appendix B for the youth interview guide.

2.3. Analysis

Thematic analysis was utilized to identify, analyze, and interpret patterns within the data and is consistent with a phenomenological approach [49]. The analysis and coding were conducted manually by RP. The transcripts were first reviewed several times to ensure familiarity with the data. Then, an initial coding phase took place, in which codes were generated based on research questions and the existing literature. Codes were reviewed and sorted by similarity into categories and collated into themes. Themes were reviewed and revised iteratively, and names and descriptions were then assigned to characterize the different facets within each theme. Finally, interpretation and reporting involved identifying quotes best illustrating identified themes relevant to our research aim. A qualitative design rooted in phenomenology was selected to address the lack of research exploring the experiences of youth with CPI and their families during the COVID-19 pandemic, prioritizing depth of experience over theoretical generalization. No predefined analytical framework was applied; instead, codes were shaped by the relevant literature on experience while remaining inductively grounded in the data, allowing participant narratives to guide the development of themes without constraint.

2.4. Research Team and Reflexivity

Interviews were conducted by the study coordinator (PhD candidate; a female researcher), who is a part of the MY LIFE study team and has established rapport with participants including a thorough understanding of the varied experiences faced by families the study. Author RP (a female undergraduate student in public health with previous qualitative research experience) conducted the analysis, working independently to manually code and analyze all transcribed interviews. Author CB (PhD; a female postdoctoral fellow with expertise in child health research) guided the methodological approach, reviewed all themes, and edited the manuscript in collaboration with RP. Author SBM supported the investigation, providing input on the interview guide, approach to analysis, and interpretation of the data. Author JY provided input to the study design and to the interpretation of data. The principal investigator, MAF (PhD; a male associate professor and research chair), has substantial expertise in youth mental health and multimorbidity, and worked in collaboration with RP and CB to draft, edit, and review the manuscript. All authors engaged in reflexivity throughout the research process, acknowledging their perspectives, biases, and assumptions, ultimately leading to nuanced interpretations of the data.

3. Results

Participants (n = 21) included the primary caregiver (n = 13) and youth with a CPI (n = 8). Youth age ranged from 13 to 18 years, with a mean age of 14.9 (SD = 2.1), and caregivers ranged in age from 36 to 55 years, with a mean age of 43.9 (SD = 6.1). Most youth participants were female (69.2%), and all primary caregivers were female (92.3% mothers and 7.7% grandmothers). There was heterogeneity in the clinical profiles of youth, including those with rheumatological, respiratory, metabolic, hematological, neurological, and dermatological conditions. Mental health conditions present among youth participants included mood (major depression), anxiety (separation, generalized, social anxiety, phobia), and behaviour (attention-deficit hyperactivity disorder, oppositional defiant, conduct).

Three overarching themes were identified from the analysis: (1) mental health impact on youth, (2) caregiver mental health declines, and (3) variability in the experiences of mental healthcare. All themes and subthemes are situated within the context of COVID-19 and its countermeasures and are summarized in Figure 1. The figure conveys the central thematic domains that emerged most prominently from the data, capturing the complex, intersecting emotional, psychological, and care-related challenges experienced by youth with CPI and their caregivers during the pandemic. Rather than presenting a linear sequence of causes and outcomes, the figure reflects a more authentic representation of how participants made meaning of their experiences within the context of COVID-19 and its countermeasures.

3.1. Theme 1: Mental Health Impact on Youth

Youth with CPI expressed the negative impact that the COVID-19 pandemic on their mental health and well-being. They described that the lack of social interaction, school closures, precarious living conditions, and uncertainties during the pandemic created an environment in which they felt they could not flourish, ultimately increasing feelings of stress, anxiety, and depression, and contributing to negative behavioural changes. This theme is conveyed from the youth’s perspective during the COVID-19 pandemic, and it should be noted that their descriptions were less verbose and detailed than those of their primary caregiver.

3.1.1. Social Isolation

The social distancing measures, lockdowns, and stay-at-home orders implemented to reduce transmission of COVID-19 had a dramatic negative impact on socialization among youth participants, creating intense feelings of boredom, loneliness, and a lack of connection to others:

“I would definitely say the worst part for me is the social isolation part of it all because I’m a very social person and rely on a lot of relationships and seeing people and that sort of thing, so it’s been hard for me. Even though you can do Zoom and Facetime and whatnot, it’s not the same as seeing and doing things with people.” (Youth)

3.1.2. Worsening Mental Health and Negative Behavioural Changes

COVID-19 significantly worsened youth mental health; youth reported increased depression due to loneliness, social restrictions, and feelings of sadness and hopelessness:

“COVID-19 has changed a lot, I don’t have any motivation to do anything now and I’m really depressed.” (Youth)

Other youth struggled more with anxiety or stress due to the uncertainties of the pandemic or fear of contracting COVID-19, noting that individuals may be asymptomatic or not follow proper public health guidelines to protect against the virus. In addition, some youth discussed how COVID-19 further exacerbated mental health issues that they were experiencing prior to the pandemic:

“I mean, in general, just with my mental health, being diabetic, there are days where it starts to get to me and definitely being cooped up in the house doesn’t help.” (Youth)

Along with mental health declines, a few youth experienced negative behavioural changes, causing them to feel increasingly angry, frustrated, and hostile:

“I am a bit angrier and more hostile since the pandemic.” (Youth)

3.1.3. Disengaged with Online Schooling

The rapid shift from in-person to online learning had a negative impact on youth, with youth reporting difficulties paying attention during virtual class, learning new material, and interacting with teachers and classmates online:

“I think the hardest part of COVID-19 is school closing because it’s hard to stay focused and motivated at home and there’s so many distractions.” (Youth)

Overall, youth found online school strenuous and disengaging, leaving them unmotivated to complete work and wishing in-person school returned as soon as possible:

“I miss school.” (Youth)

3.2. Theme 2: Caregiver Mental Health Declines

Caregivers described experiences of extreme stress placed on their families during the pandemic, resulting in increased caregiver roles and caregiver burnout that negatively impacted their mental health. It should be noted that this theme is presented from the caregiver’s perspective.

3.2.1. Fear, Uncertainty, and Anxiety

Caregivers experienced intense anxiety due to uncertainties about COVID-19 risks, confusion over public health guidelines, and a lack of clear information about the virus. For those caring for youth with CPI, this fear was compounded by the heightened vulnerability of their child, leading to constant worry about potential exposure to COVID-19. The fear of unknowingly bringing the virus home created an ongoing emotional burden, making even routine activities a source of distress:

“I get anxious when shopping, I just feel like my heart is racing when I’m in the stores and I have a lot of fear. Even though I know I’m social distancing in the store, I sanitize, it just makes you very uncomfortable.” (Caregiver)

The uncertainty surrounding COVID-19 countermeasures—such as social distancing, mask mandates, and capacity restrictions—left caregivers overwhelmed as they struggled to navigate daily life. Beyond their own concerns, caregivers faced the challenge of explaining these ever-changing restrictions to their children, particularly when others in the community did not adhere to public health guidelines. This lack of consistency created confusion for children, especially those with a CPI, as they grappled with why their own precautions were stricter than those of their peers. Caregivers faced the difficult task of enforcing safety measures while trying to protect their child from unnecessary fear and distress:

“I’m an adult and I can clearly understand the restrictions and understand more complex things and it’s very hard for her because she’s six… And it’s hard with some of the measures because she cannot help her eczema, and she can’t stop washing her hands and sanitizing because that’s what we have to do, so, she’s totally stuck in this endless loop.” (Caregiver)

3.2.2. Concerns About Physical and Mental Health of Youth

Youth with CPI were especially vulnerable during the pandemic, causing caregivers to become increasingly worried over how COVID-19 may impact their child. Of serious concern was how COVID-19 may exacerbate their CPI or create additional health challenges:

“I would say that asthma has made her miss a lot more school, because you know, whenever her asthma flares up, I’m not going to send her because I don’t want her to get COVID while she has uncontrolled asthma.” (Caregiver)

Caregivers also observed how pandemic-related stress affected their children, causing stress-induced flare-ups of certain conditions in some youth:

“I personally think the anxiety is something else that’s really impacted her, … she’s having like physical responses to her anxiety. So, she’ll spike a fever and have a sore stomach and it starts with, well ‘I’m having an asthma issue’, not even an asthma attack, an asthma flare-up, but then, from there, it’s like, well, now I feel sick to my stomach and now I’ve got this now… it’s just like all anxiety, manifesting in her body because she is worried. She said what if it’s COVID? What if I get you sick? What if? What if?” (Caregiver)

Some caregivers reported that their child experienced heightened anxiety involved with going out in public, while others dealt more with separation anxiety from family members. Depression was also a common area of concern for caregivers. As is consistent with data from youth interviews, caregivers noted depression symptoms increased among youth due to social restrictions, loneliness, and missing out on major milestones in life:

“[youth participant] himself has been more depressed and withdrawn during COVID-19, because he can’t go anywhere, he can’t see anyone.” (Caregiver)

Along with noticeable changes in youth mental health, most caregivers identified changes in youth behaviours or personalities that were also identified by youth participants themselves. Nearly all caregivers reported that their child had been experiencing more outbursts or more hostile, antisocial behaviour than usual:

“The isolation with [youth participant] has been a huge challenge…Especially her behaviour has gotten much worse, outbursts, angrier, because she just doesn’t know how to process it all.” (Caregiver)

Negative coping mechanisms to deal with the stress of the pandemic were also observed, with youth not knowing how to handle their emotions and cope with the pandemic:

“He’s not good with coping mechanisms because he’s been getting into drugs, he smokes marijuana and vapes and uses a marijuana vape sometimes.” (Caregiver)

3.2.3. Lack of Socialization

Like youth participants, caregivers felt the brunt of COVID-19 social restrictions and social distancing measures. Social interactions often serve as a critical coping mechanism, providing caregivers with a sense of normalcy, emotional support, and an opportunity to share experiences with others who understand their challenges. The loss of these in-person connections stripped caregivers of a vital outlet for discussing their child’s condition, seeking advice, and finding relief from the ongoing emotional strain of caregiving. Without these social supports, many caregivers felt increasingly isolated, exacerbating the stress and anxiety already present in managing their child’s health during an uncertain time:

“It’s that whole social aspect, you know, we can talk, we can see each other virtually, but it’s not the same. So, I would say the hardest part of COVID-19 generally and on my mental health is just the lack of in-person socialization.” (Caregiver)

3.2.4. Increased Stress and Caregiver Role

Caregivers reported experiencing extreme stress during the pandemic due to disrupted daily routines, uncertainties about the long-term impacts of COVID-19, and increased caregiving roles. Even before the pandemic, these caregivers faced significant emotional and physical demands, managing complex medical needs, frequent healthcare appointments, and the ongoing anxiety of their child’s condition—placing them at greater risk of burnout. The pandemic intensified these stressors by disrupting essential medical care, increasing social isolation, and eliminating external support systems, forcing caregivers to take on even greater roles with little relief.

Beyond health concerns, caregivers reported stressful living environments, loss of employment, and increased demands due to work and school closures, creating no separation from their work and home life:

“I used to drive back and forth to my office. That would be sort of my transition between my workplace and my home. So, it’s like, I was leaving work at work, and then going into my home. Well, now, my home is my work, and there’s no downtime between me going downstairs and making dinner for the kids, so it’s like I just turned off one work call and now I popped down and I’m on as mom.” (Caregiver)

As the months went on, the cumulative stress of these overlapping responsibilities led to exhaustion, burnout, and emotional instability. Many caregivers described the challenge of maintaining emotional resilience for their children amidst the pandemic, expressing struggles in sustaining their composure and optimism for the future:

“It’s difficult to keep strong, you know, as a parent for a child when you can’t really keep it together yourself.” (Caregiver)

3.3. Theme 3: Variability in the Experiences of Mental Healthcare

The shift from in-person to virtual mental healthcare created both challenges and benefits for youth. Both youth and caregivers found virtual healthcare convenient, accessible, and supportive, but struggled with the lack of face-to-face interaction, technical difficulties, and privacy concerns that arose due to the virtual format.

3.3.1. Mental Healthcare Was Supportive

Youth expressed feeling supported and that their mental healthcare needs were taken care of during the pandemic. All youth were connected with either a psychiatrist, psychologist, therapist, counsellor, or social worker during the first year of the pandemic and reported feeling that no other mental health resources were missing to improve their care:

“I have lots of support everywhere for my mental health, it’s super good.” (Youth)

3.3.2. Virtual Mental Healthcare Lacks Human Connection and Simplicity

Although youth were able to consistently meet with a mental health professional, not all youth or caregivers felt that the virtual experience was as effective as in-person mental healthcare. Of major concern about virtual mental healthcare was privacy concerns, with youth expressing that joining virtual appointments at home was uncomfortable, as they did not want their family overhearing their personal conversations. Further, some youth and caregivers reported technical difficulties that interrupted their sessions, ultimately disrupting the quality of care the child received.

Lack of human connection and in-person interaction was another major barrier to effective virtual mental healthcare, making it difficult for youth to feel comfortable and fully express their emotions. This overarching feeling of emotional detachment and irregularity impacted the ability for youth to benefit from their virtual appointments, ultimately creating additional stress in their lives:

“I feel crazy because I am just talking to the computer, like hey what’s up, how are you doing?” (Youth)

“I don’t know that online therapy is going to help until she can have some more human connection and, and more of a, I hate the word normal, but more of a normal way of being again.” (Caregiver)

3.3.3. Virtual Physical Healthcare, but In-Person Mental Healthcare

While both caregivers and youth expressed similar negative experiences with virtual mental healthcare, many indicated that continuing with virtual physical healthcare appointments may be more beneficial and accessible:

“I don’t mind doing phone calls, especially if it’s about diabetes and things, I don’t mind talking over the phone for doctor’s appointments and things at all.” (Youth)

Youth discussed how in-person physical healthcare appointments can create intense feelings of anxiety and concern about receiving bad news about their health, while virtual physical healthcare appointments allowed for a more relaxed environment, helping them feel more at ease when meeting with their healthcare provider. Furthermore, caregivers emphasized the time-saving advantage of virtual physical healthcare appointments, noting a lack of commute and reduced waiting time for appointments. In contrast, wanting to return to in-person mental healthcare was significantly expressed by youth and caregivers:

“It just feels like, for counseling and stuff, I can get more out of it in person than over the phone.” (Youth)

“I feel that 100% her therapy would be much more effective in person.” (Caregiver)

4. Discussion

This qualitative study examined youth with CPI and caregiver perceptions and experiences during the COVID-19 pandemic. The findings contextualize the increases in depression, anxiety, and stress among youth with CPI and their caregivers and illustrate how the mental health impacts of youth and caregivers were exacerbated by feelings of loneliness and uncertainty associated with the pandemic and related countermeasures. The shift to online school and social restrictions removed support and coping mechanisms for both youth and their caregivers, which augmented feelings of distress and isolation. Furthermore, the results provide insights into the experiences with healthcare during the pandemic, showing that virtual mental healthcare, while accessible, was perceived as less effective than in-person care, lacking human connection, privacy, and comfort. Conversely, virtual physical healthcare services were viewed positively, having important implications for the future delivery of these services for youth with CPI.

Youth with CPI experienced heightened anxiety, stress, and depression during the pandemic, which is consistent with current findings [13,14]. For example, youth participants reported experiences of elevated anxiety and stress arising from concerns about COVID-19 infection and exacerbation of their CPI, worries about a family member becoming ill from COVID-19, and a generalized fear of COVID-19. Increased depression among youth was attributed to social restrictions, which impeded their ability to interact with their peers, engage in physical activities, and attend in-person school, thereby exacerbating feelings of social isolation and loneliness. The significant declines in mental health reported by youth in this study support findings of previous quantitative studies [9,12,50,51,52,53] and provide further insight into this phenomenon. Taken together, these observations highlight the need for more comprehensive mental health and social service supports to help youth cope with fear, uncertainty, and adversities surrounding emerging disease outbreaks such as COVID-19.

Negative behavioural changes, including increased outbursts and anger, were expressed by youth and echoed by caregivers, providing new insight into the influence of the pandemic on youth moods and behaviours. Youth expressed feeling increasingly frustrated, angry, and hostile due to the implementation of COVID-19 countermeasures, which restricted their ability to socialize with others. While youth demonstrated a level of self-awareness by recognizing changes in their mood and behaviour, they demonstrated difficulties with self-regulation and utilizing coping mechanisms to deal with intense feelings of frustration, which is consistent with prior research [54,55]. In addition, the importance of social interaction was highlighted in this study, with all youth reporting significant negative impacts of social restrictions on their mental health. This finding may result from a perceived sense of loss among youth who, in the context of their CPI [56,57,58], maintain a relatively high level of functioning or minimal impairment. For these youth, the shutdown of organized sports, recreational facilities, and other social outlets due to the pandemic removed opportunities for physical activity and peer interaction [59,60]. This may have intensified feelings of loneliness and boredom, thereby potentially elevating levels of depression among youth and diminishing their drive and motivation in various aspects of life.

Youth described online schooling as arduous, emphasizing their desire for in-person interactions and noting that the online platform made it increasingly difficult to stay engaged and efficiently learn new material. Extant evidence has indicated that online learning environments can reduce social interactions among youth [61,62], and negatively impact youth mental health [1,61,63,64,65], which was further uncovered in this study. Considerations for future pandemics requiring lockdowns should focus on flexibility in education and recreation, recognizing the limitations of online learning and adapting educational approaches to include hybrid models or alternative learning pathways to help accommodate diverse needs. With more comprehensive modes of school delivery during a pandemic, youth with CPI can feel better supported and connected to their peers, helping alleviate stressors caused by social restrictions and enhance youth mental health and ability to learn educational material.

Our observed decline in caregiver mental health builds on existing evidence that caregivers of youth with CPI experienced increased caregiver distress and anxiety during the pandemic due to a more demanding caregiver role [15]. Our analyses showed that work and school closures created stressful living environments for caregivers, balancing working from home, helping their child with online school, fostering their emotional well-being, and maintaining personal resilience amidst their manifold tasks. This added role overload, combined with caregivers’ already heavy burdens, resulted in caregiver burnout and exhaustion, which was further exacerbated by concerns about the health of their child and an overall fear of COVID-19. Feelings of social isolation coupled with increased caregiver burnout point to significant concern for the mental health and well-being of caregivers of youth with CPI during the pandemic. The deterioration of caregiver mental health is concerning—it can hinder caregiving responsibilities and result in poorer caregiver and child health outcomes [1,16]. Our findings highlight the need for caregivers to have access to comprehensive mental health resources and supports to prevent caregiver burnout, reduce burden, and promote positive health outcomes for the whole family.

Although previous quantitative findings have reported that caregivers underestimate psychological and psychosocial distress in youth with CPI during the pandemic [1], caregivers appeared to observe changes in the mental health of their children that were consistent with youth-reported mental health concerns. Therefore, while clinical measures of caregiver- and youth-reported distress may be misaligned, agreement may emerge in a discussion of the qualitative nature of their perceptions of distress, which is coherent with family-centred care. Models of family-centred care are crucial to support the physical and mental health of youth with CPI and their families, helping better integrate physical and mental health services and inform better coordination of care, resource allocation planning, and versatile and resilient mental health services. A discussion of the quality and context of distress is consistent with family-centred care and may be a useful starting point to achieve agreement between youth and caregivers.

Widespread disruptions to physical and mental healthcare services were of particular concern for youth with CPI. Some youth were able to consistently meet with a mental health professional and feel supported during the beginning of the pandemic; however, both youth and caregivers felt that virtual mental healthcare was insufficient compared to in-person services. As is consistent with current findings [40,41,42], major complaints about experiences during virtual mental healthcare appointments included technological issues, privacy concerns, and lack of emotional and human connection. The disconnect observed between access and effectiveness in youth experiences with virtual mental healthcare emphasizes the importance of in-person mental healthcare and the need for more comprehensive ways of delivering mental healthcare services to this population. The experiences and attitudes of youth with CPI and their caregivers about virtual mental healthcare are concerning, as they point to fragmentations in care and the potential of putting an already at-risk group at greater risk for further mental health complications and deterioration. These findings underscore that for youth with CPI, in-person mental healthcare is not merely preferable but often essential. The nuanced clinical needs, heightened emotional sensitivity, and complex psychosocial stressors faced by this population require therapeutic environments where trust, nonverbal communication, and relational safety can be fully established—conditions that are difficult to replicate virtually. Finally, youth and caregivers felt that virtual physical healthcare services were beneficial and would be open to continuing with this format post-pandemic. Youth expressed that virtual physical healthcare appointments seemed to alleviate the stress and fear of the doctor’s office, allowing youth to feel more secure discussing their concerns with a health professional. Caregivers also reported virtual physical healthcare appointments as extremely convenient and time efficient, allowing youth to promptly connect with a health professional and reduce the preparation and travel time for in-person appointments.

5. Limitations

There are some limitations to this study. First, the use of virtual interviews limited the potential for nonverbal communication, which could have provided additional valuable information and insights into how participants felt. Second, because constructivist qualitative research does not seek to be generalizable, these results may not apply to other populations of youth and caregivers. Third, no comparison group of youth without CPI was included, limiting the ability of the study to directly contrast the experiences of youth with CPI to those without CPI during the pandemic. Finally, it is unknown whether the perceptions, attitudes, and experiences of youth with CPI and their caregivers during the COVID-19 pandemic have changed since the time of the interviews. Participants may have adapted to lifestyle changes created by COVID-19 and adjusted to virtual healthcare services.

6. Conclusions

Youth with CPI reported increased feelings of depression, anxiety, and stress, as well as negative behavioural changes. Caregivers reported elevated fear, uncertainty, anxiety, stress, and concern about the mental and physical health of their child. Further, youth and caregivers reported that virtual mental healthcare was insufficient in providing the same quality of care that in-person services provided pre-pandemic. However, they both expressed beneficial experiences with virtual physical healthcare, providing important implications for delivering physical healthcare services post-pandemic. Efforts to improve the effectiveness, versatility, and comprehensiveness of mental healthcare for youth with CPI are needed, ultimately helping prevent further exacerbation of mental health issues and reducing the burden of future global health crises on youth with CPI and their families. As such, the reinstatement and sustained delivery of accessible, face-to-face mental healthcare should be considered a core component of post-pandemic recovery planning. Healthcare systems and policymakers must prioritize embedding in-person mental health services within pediatric, school-based, and multidisciplinary care settings to ensure timely, coordinated, and responsive support for this vulnerable population. Incorporating models of family-centred care for caregivers and youth with CPI can further foster open communication, collaboration, and information sharing, helping strengthen caregiver and youth relationships and better integrating physical and mental healthcare that is responsive to families’ unique dynamics, priorities, and values. Future research should investigate how the COVID-19 pandemic shaped the mental health trajectories and care experiences of youth with CPI and their families, with particular emphasis on assessing the adequacy, accessibility, and equity of virtual mental healthcare delivery across larger, more diverse samples of youth with CPI and their caregivers.