Youth Caregivers: Before, During, and After the Pandemic

Abstract

The estimated 5.4 million children in the United States providing unpaid care, support, and assistance to their family members and other individuals are called “youth caregivers.” Before the COVID-19 pandemic, youth caregivers existed on the fringes of American society, without recognition in state or federal policy. They experience higher levels of social isolation, depression, anxiety, and absenteeism from school in comparison to their non-caregiving peers. The pandemic has only served to widened the disparities they face. This article presents recommendations for research, policy, and practice to build a more equitable “Post-COVID-19” society for youth caregivers.

Key Words:

Youth caregivers, COVID-19 pandemic, caregiving, marginalization, policy

Children with unpaid caregiving responsibilities for family members or other individuals close to them, such as friends, romantic partners, or neighbors, are a growing yet understudied phenomenon in the United States. These children younger than age 18 provide care to family or other people as a result of disability, chronic illness, injury sustained during military service, mental illness, substance abuse, old age, or other health conditions requiring assistance. They may help with household tasks such as cooking or cleaning, administer medicine, provide intimate care like bathing or dressing, emotional care (e.g., talking, reading, or sitting with the cared-for person), financial assistance (e.g., paying bills or working to bring money into the home), look after siblings, and translate language.

Prior to the COVID-19 pandemic, there were an estimated 5.4 million children and adolescents with caring roles in the United States (Armstrong-Carter et al., 2021). As at least 34 million Americans have already contracted COVID-19, the emergence of long-COVID and its long-lasting residual illness may create what Pomeroy (2021) calls a “tsunami of disability.”

Furthermore, the author of this article has previously warned that a new generation of children with caring roles will materialize as a result of family members now disabled due to long-COVID (Lewis, 2021). Before the pandemic struck, this group of children was already marginalized due to the hidden nature of unpaid care in the private sphere of the home, the lack of legal recognition, and the scarcity of dedicated formal support services. The pandemic amplified prevailing inequalities in the United States, as evidenced by the disproportionate rates of Black and Hispanic/Latinx infection, hospitalization, and deaths from COVID-19, high unemployment rates of workers of color and women, and increased discrimination against Asian Americans (Kantamneni, 2020).

While dedicated research on children with caring roles during the COVID-19 pandemic is quite limited, this article surmises that the impact will be felt by these children for decades to come. It lays out the precarious state of children with caregiving responsibilities in pre-pandemic times and in the current, second year of the pandemic, and provides a clarion call for research, policy, and practice looking toward a so-called “Post COVID-19” world.

Before the COVID-19 Pandemic

For past 30 years, the awareness of children engaged in familial caring roles has been growing to varying degrees in the United Kingdom and to a lesser extent in Europe. In Canada, some countries throughout Europe, and Australia, these children are often referred to as “young carers.” In the United States, there is not one accepted term for young caring and such children may be called “young caregivers,” caregiving youth,” or “youth caregivers” (Lewis, 2018).

Some definitions consider young people as old as 25 to be “young caregivers” (D’Amen, Socci, and Santini, 2021). This lack of a common terminology further exemplifies the hidden nature of young caring in the United States (Kavanaugh, Kalipeni, and Stamatopoulos, 2016). This article uses the term “youth caregivers” to bring attention to its present focus on children younger than the legal age of 18.

A commonly accepted definition of young caring proposes that young carers are:

“children and young persons under 18 who provide or intend to provide care, assistance, or support to another family member. They carry out, often on a regular basis, significant, or substantial caring tasks and assume a level of responsibility which would usually be associated with an adult” (Becker, 2000, p. 378).

Youth caregivers remain a particularly hidden group of vulnerable children in the United States. The Leu et al. (2021) cross-country classification scale on the recognition of young carers has placed the United States at level 5, “Emerging,” which indicates that there is a growing public or specialist awareness and recognition of young carers, a small but growing research base, yet no specific services or interventions for these caregivers.

The number of youth caregivers in the United States is assumed to be a gross underestimate: the first and only national study on youth caregivers was conducted in 2005, and found there were at least 1.3 to 1.4 million children ages 8 to 18 who held a caring role in their family (Hunt, Levine, and Naiditch, 2005). While more recent research from AARP and the National Alliance for Caregiving (2020) involving adult family caregivers estimates there are more than 5.4 million youth caregivers in the United States, it is best to assume that figures of youth caregivers are much higher, particularly as the AARP and National Alliance for Caregiving survey was fielded prior to the pandemic.

The sparse existing research on youth caregivers in the United States establishes that youth caregivers are at risk for multiple negative health, educational, and social outcomes (Kavanaugh et al., 2016). Mental health problems such as depression and anxiety are commonly reported among youth caregivers; furthermore, research in the United Kingdom and other European countries have indicated that adolescent carers may also engage in self-harm due to their caring role (Lewis, 2018; Lewis et al., 2021). Compared to their non-caring peers, youth caregivers face numerous challenges in school: chronic absenteeism, tardiness, and difficulty finding time to study or complete homework because of caregiving responsibilities (Siskowski, 2006).

Youth caregivers also report positive emotions in relation to caregiving, such as love, attachment and bonding to their care recipient, and they also may gain skills in time management, budgeting, and assertiveness that can prove useful in future employment and higher education (Joseph et al., 2020; O’Dell et al., 2010).

Reflective of their marginalized status in American society, youth caregivers face inequity and discrimination as a result of entrenched racism, sexism, and ableism. Previous research has shown that youth caregivers are more likely to live in low income families or in absolute poverty, and Black and Brown youth caregivers are at particularly high-risk for social exclusion (Hunt, Levine, and Naiditch, 2005). While youth caregivers occupy a place on the fringes of society, certain groups of youth caregivers are especially marginalized: those identifying as LGBTQ+, Black, Latinx, Asian, or indigenous, those in immigrant, undocumented, or refugee families, those for whom English is a second language, religious minorities, and those who are also disabled. Latinx and Black children are twice as likely to be youth caregivers as are White children (AARP and National Alliance for Caregiving, 2020).

Some youth caregivers may face stigma and discrimination in association with their care recipient’s condition. This can be seen in families where there is a presence of mental health problems, substance abuse, visible disabilities, or family members affected by HIV/AIDS. The ongoing opioid epidemic has created first-time youth caregivers who find themselves caring for siblings as a result of their parent(s)’ opioid addiction and in kinship care arrangements with their grandparents (Brundage and Levine, 2019). In families with a stigmatized condition, young caring can be especially hidden from the view of teachers, school workers, and medical professionals, out of a fear of social service involvement. Concern for child welfare and neglect have been raised in the discourse on the appropriateness of young caring, especially in relation to disabled or substance addicted mothers (Olsen and Parker, 1997).

The paucity of widespread, dedicated formal support programs and interventions for youth caregivers in the United States further deepens the fragile position they occupy. The country’s premier nonprofit organization for youth caregiving, the American Association of Caregiving Youth (AACY), was founded in 1998 by Dr. Connie Siskowski, in Boca Raton, Florida. Much of the nation’s research and supportive intervention agenda for youth caregivers has been set by AACY through its Caregiving Youth Project in the Palm Beach County school district, its Caregiving Youth Institute and Caregiving Youth Research Collaborative—a collection of youth caregiving–focused researchers across the United States.

Other organizations offer disease-specific support to young people, such as support groups for Alzheimer’s disease, Huntington’s disease, and siblings of disabled children—typically without mentioning the “youth caregiver” label. Online self-help forums have been created in the last decade, and the Caregiver Space is an example of a prominent Facebook group for younger age caregivers. Despite these promising initiatives, supportive programs for youth caregivers on a national scale remain inconsistent and modest.

During the COVID-19 Pandemic

Youth caregivers were on precarious ground prior to the pandemic, and it has only served to exacerbate existing inequalities. Among children and adolescents, researchers have found that mental health problems have increased as a result of school shutdowns and social isolation (Loades et al., 2020). Fitzpatrick, Carson, and Weisz (2020) note that with 35 percent of children receiving mental health support through school, school closures likely meant a lack of such support. Students facing food insecurity rely upon schools for free or reduced school meals; as the pandemic continued into Fall 2020, school districts struggled to deliver meals to students in need (Ferren, 2021).

For some youth caregivers, school closures meant the end of their only source of formal support services. In pre-pandemic times, the classroom could provide a reprieve from the caring role at home. But school closures necessitated by the pandemic meant youth caregivers lost this critical break from caregiving, instead finding themselves with their care recipient 24/7. Disabled children who attended special educational classes or dedicated schools found their learning support transition from classroom to home lacking, instead their support needs were shifted onto the family in the home (Clifford and Palisano, 2021). Youth caregivers stood in the gap and assisted with their disabled siblings.

Financial pressures caused hundreds of nursing homes around the country to close, sending older adults back into the family home (American Health Care Association, 2020). Youth caregivers were the safety net for many families, and as overworked, stressed parents managed the pressures of working from home, youth caregivers faced their own set of pressures, providing care for siblings, grandparents, and other family members in need. Carers Trust (2020) in the United Kingdom found that 11 percent of young carers reported an increase of thirty hours or more weekly in time spent caring in the home during the pandemic. Some 30 percent of young carers reported that they provided care for more people during the pandemic than they had previously (Carers Trust, 2020). Virtual and remote learning holds benefits for some children, but youth caregivers were forced to continue their caring role while juggling virtual learning, leaving them exhausted and under immense strain.

Black and Brown children tended to fare worse during the COVID-19 pandemic (Gabrielli and Lund, 2020). Padilla and Thomson (2021) reported that more than one in four Latino and Black households with children experienced three or more economic- or health-associated hardships during the pandemic. Housing insecurity is one such enduring hardship, with four in ten Latino and Black households with children reporting that they doubt their ability to make their next housing payment (Chen and Guzman, 2021).

Students of color are more likely to lack the technology (e.g., high-speed internet, computers) necessary for remote learning (Ferren, 2021). It is also critical to consider the experience of LGBTQ+ youth caregivers during the pandemic. Paceley et al. (2020) found that queer and trans youth felt isolated from other queer sources of support and affirmation that had been provided in school. Greater incidents of depression, anxiety, and self-harm were reported, as well as increased gender dysphoria (Paceley et al., 2020). While dedicated research has not yet been conducted with LGBTQ+ youth caregivers during the pandemic, this article suggests that LGBTQ+ youth caregivers likely suffered similar distressing experiences during the pandemic, but worsened because of the strain of their caring role.

Dvorsky, Breaux, and Becker (2020) posit that some children and adolescents may emerge from the COVID-19 pandemic having adapted positively to school closures, at-home working, and prolonged social distancing measures. They emphasize resiliency originating from protective factors such as close relationships to peers and adults, effectiveness in schools and organizations, and self-belief (Dvorsky et al., 2020). In ideal scenarios, youth caregivers have these adaptive systems already in place. However, the social isolation, fragmented formal sources of support, and disrupted school and home environments common to the experience of youth caregivers does not foreshadow wholly positive outcomes in the post-COVID world. Furthermore, as Padilla and Thomson (2021) noted, Black and Latino children are more likely to face multiple stressors over a longer period of time, decreasing their ability to be resilient in the face of traumatic events—such as the COVID-19 pandemic.

After the COVID-19 Pandemic

As U.S. society attempts to shift to a “Post-COVID” framework, public health concerns such as the rise of new COVID-19 variants, vaccine hesitancy, and disparity in access will hamper a smooth transition (Acholonu, 2021; Khubchandani et al., 2021; Williams et al., 2021). The pandemic has widened the chasm of systemic inequities already experienced by vulnerable children (youth caregivers as one example), rather than serving as the “great equalizer” some claimed the pandemic might be (Galasso, 2020; Mein, 2020; Sonu, Marvin, and Moore, 2021). This article issues a dire warning that unless research, policy, and practice work jointly to make great strides to protect youth caregivers, millions of children and adolescents will face psychosocial, educational, and health setbacks with reverberating effects across generations.

Research

To more accurately capture the current numbers of youth caregiving in the United States, a new, national study on youth caregiving in which children and adolescents are asked about their contributions in the familial home directly—rather than a survey answered by their adult parent or guardian—must be conducted. Previous research with young carers in the United Kingdom has established that parents, guardians, and other family tend to underestimate the amount of caregiving performed by a child in the home (Dearden and Becker, 2004).

In addition to large-scale, quantitative surveys, qualitative research with particularly hidden groups of youth caregivers (e.g., those identifying as LGBTQ+, Black, Brown, indigenous, and other ethnic minorities, undocumented children, and disabled youth caregivers) should be used to better understand the nuances and diversity of the young caring experience in American society.

Policy

In the urgency to create safe reopening of schools, federal and state dollars must be invested in COVID-safe procedures and infrastructure, such as ventilation in schools, to protect youth caregivers and the vulnerable family members they care for. Both the Department of Education and local school districts should maintain a commitment to closing the digital divide: schools require an adequate number of laptops commensurate to the number of students, both state governments and private communication companies can work together to ensure students have Wi-Fi access at home via Wi-Fi hot-spots, and schools should put technology support in place should problems arise.

In a post-COVID society, the United States will continue to fall behind countries deemed more advanced in young carer policy and awareness (e.g., the United Kingdom) if policy change is not prioritized in the federal legislative agenda (Leu et al., 2021). President Biden’s nearly $2 trillion historic proposal to sustain jobs and infrastructure includes $400 billion to support home- and community-based care services, however, children and adolescents with unpaid familial caregiving responsibilities are not explicitly mentioned (Graham, 2021). The call to support the “care economy” shows promising impacts to uplifting disabled adults, Black and Brown care workers, and undocumented immigrants (Foster and Newman, 2021). Such policies may trickle down to improve the circumstances of youth caregivers via the enrichment of their families. Nevertheless, without unequivocal recognition of youth caregivers in new policy initiatives, the chance for youth caregivers to remain at risk for continued marginalization and discrimination in life after COVID-19 is too significant to bear.

Practice

Supportive interventions for youth caregivers should take into account the rapidly changing world and remain responsive. U.S. society cannot solely rely upon in-person support services in a post-COVID world, rather the advances made in technology (and lessons learned) during the pandemic can be viewed as opportunities to widen access to youth caregivers in rural areas or those without any contact to formal services.

One example of an innovative, online primary prevention intervention is the ME-WE mobile app, designed by a cross-national European team to provide an online support mechanism for young carers (Casu et al., 2021). The ME-WE mobile app is a multilingual product that aims to deliver psychoeducational, psychotherapeutic, and social support for young carers at a distance via educational resources, professional and peer support (Casu et al., 2021). While the ME-WE mobile app is designed for use in European member states and in the United Kingdom, it provides an example of the type of far-reaching formal support for youth caregivers that could be offered through the use of technology and good practice.

Another possible pathway for supportive intervention could be nationwide replication of the AACY Caregiving Youth Project, in which youth caregiver support staff are placed in schools to help identify and offer formal services to youth caregivers. The Caregiving Youth Project provides home visits from a social worker and during school breaks children attend camps, picnics, and other fun activities. The use of nonprofit, charitable organizations to provide direct interventions with youth caregivers has been modeled with evidenced success in the United Kingdom, Australia, and in limited occurrences in Europe (Joseph et al., 2020).

There is a strong likelihood that the COVID-19 pandemic has created first-time youth caregivers, and long-COVID will continue to do so for years to come. When children are absent from the classroom as a result of needing to quarantine from COVID-19 contact, schools should ask children directly about their potential to perform caregiving tasks in the home, as a way of identifying youth caregivers.

Conclusion

Before the advent of the COVID-19 pandemic, millions of youth caregivers in the United States provided invaluable contributions to the lives of their disabled or ill family members and friends without recognition or support. The social isolation, mental health difficulties, and detrimental effects to their education and social life common in the youth caring experience seem to only have worsened during the COVID-19 pandemic. Any existing inequities have also deepened, heightening the vulnerability of children and adolescents with caregiving responsibilities. However, the long-standing advocacy efforts of disability and care work activists are increasingly receiving attention as society seeks to better understand how to build a more equitable world post-COVID. The current, ongoing call to support care infrastructure as a matter of policy and practice presents a potentially historic watershed moment for youth caregivers.

An inclusive and fair society—particularly one supported by the life-sustaining unpaid work of children—must center youth caregivers in its progress forward or it will fail to protect its most vulnerable, overlooked, and marginalized citizens.

Feylyn Lewis, PhD, is a research fellow in the School of Education and Social Work at the University of Sussex in Brighton, U.K. She’s a native of Nashville, Tennessee, and has cared for her disabled mother since she was 11, an experience that led her to research the lives of young caregivers in the United States, U.K., and Europe.

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