Shining a Light on a “Hidden” Population: Hispanic Adolescent Women Caregivers

Elizabeth Macias¹, Joanna F. Mackie^2*

¹Birmingham Community Charter High School, Van Nuys, California, USA

²Department of Population Health Sciences, University of Central Florida, College of Medicine, Orlando, Florida, USA

Abstract

Many studies explore the experience of family caregiving from various perspectives within the adult population. However, little attention has been focused on adolescent caregivers, who are sometimes known as a “hidden” population. An adolescent caregiver is typically an individual who is younger than 19 years old and provides substantial assistance with physical tasks, mental or cognitive tasks, or other supports for a family member with some type of physical or mental health disability, short- or long-term. Similar to the adult caregiving population, adolescent caregivers tend to be female. Among studies that include adolescents, very few consider race/ethnicity and the specific cultural expectations for Hispanic adolescent women, who may face greater expectations to provide caregiving compared with other groups. This opinion piece describes some of the unique mental health vulnerabilities of adolescent Hispanic women caregivers and the social-emotional tradeoffs they must make in order to balance participation in typical adolescent responsibilities and activities and providing care for a family member. We conclude by calling for more research into these experiences to develop a better understanding of the supports that could mitigate the increased mental health risks of caregiving and ultimately support all family members in thriving.

Introduction 

In the context of family caregiving, much attention has been paid to the disproportionate share of caregiving that falls to women compared with men. However, little attention has been focused on adolescent caregivers, who are sometimes known as a “hidden” population. An adolescent or child caregiver is defined as a child “18 . . . and younger, who provide[s] significant assistance to relatives who need help due to physical limitation(s), mental illness, or other condition.”¹ Because economic strain may be placed on families by hiring a professional caregiver, many families rely on adolescent caregivers to provide necessary care for various family members. Similar to adult caregivers, adolescent caregivers tend to be young women.

The cultural beliefs of Hispanic families, in general, indicate that women should take on caregiving roles, and that young people should respect their elders. Additionally, some Hispanic families may have faith traditions that reinforce traditional gender roles, which include women as caregivers, and teaching adolescent young women to expect to take care of others as part of their cultural identity. Women may take on their role as caregivers believing it is their responsibility.^2,3 Young women are expected to accept the role of being a family caregiver due to similar cultural beliefs and expectations.⁴ This population may experience different cultural expectations around caregiving compared with other groups, making it important to understand the unique burdens and rewards within the cultural context. Many studies have addressed caregiver fatigue among adult caregivers. This work addresses the different experiences of adolescent caregivers.

Unique Vulnerabilities of Hispanic Adolescent Female Caregivers

“Hidden” populations are often hard to access given their “social or physical location, vulnerability, or otherwise hidden nature.”⁵ Such difficulty in finding adolescent caregivers can be attributed to a cultural pressure of seeking approval from elder family members, and other pressures of taking the initiative to become a caregiver due to obligation.² However, some research reports family caregivers showing elevated levels of stress,⁶ caregiving burden,⁶ depression,⁴ and anxiety.⁴ Some negative implications of caregiving can be traced back to the feelings of isolation caregivers feel because of their role. In one study, most caregivers reported a feeling of loneliness when taking care of their loved one.⁷ The isolation from society many caregivers feel may also play a role in the decrease of the caregiver’s psychological well-being. They tend to experience isolation because they are “deprived from social and leisure activities… due to caregiving responsibilities.”¹ Young Hispanic women may feel cultural pressure from their families to prioritize caregiving over social activities and/or academic responsibilities, resulting in a decrease in psychological health due to experiencing elevated levels of stress,⁶ caregiving burden,⁶ depression,⁴ anxiety,⁴ and isolation.

Caregiving for Older Relatives to Support Activities of Daily Living

Within the Hispanic community, when care recipients are unable to take on tasks such as Activities of Daily Living, they may receive care from an informal caregiver (often family) to navigate their daily tasks.¹ One common condition among older adults that may result in a need for caregiving is cardio-vascular disease (CVD). Older adults with CVD may need support carrying out basic tasks. Such dynamics are demonstrated in a study of college student caregivers who reported that they often had to assist their loved ones who were dependent on them for walking, feeding, and dressing.⁴ Additionally, managing the needs of an individual with cardiovascular disease, such as difficulty walking, feeding, and dressing⁴ tends to be physically demanding and may not be possible for older adults.⁸ Most adolescent caregivers have responsibilities and activities outside of caregiving, which may result in having to choose between fulfilling a family obligation and participating in school and peer-related activities.

In addition to mental health concerns, research attention is needed for adolescent caregivers and their general well-being. Well-being is defined as “how people feel and how they function both on a personal and social level.”⁹ The idea of burden and other mental health factors (stress,⁶ anxiety,⁴ depression⁴) are considered to be predictors of negative mental health effects among caregivers. However, little research focuses on how these predictors affect mental health specifically for adolescents, and caregivers such as Hispanic young women who are structurally minoritized via race/ethnicity, gender and age, both in society generally as well as within the family due to age and gender. There is a need for greater breadth and depth of research among adolescent caregiver populations because of the various cultural norms and expectations that shape their caregiving experiences, and the variety of caregiving needs that may exist among family members.  

Conclusion  

An unpublished study conducted at a public high school in Los Angeles County examined the mental health of adolescent caregivers, specifically female Hispanic adolescents, when caring for family members with CVD. Findings suggested that such individuals experienced elevated levels of stress, depression, anxiety, and caregiving burden. Interviews revealed that these caregivers often had to commit significant amounts of time to provide adequate care to their loved ones. For example, one participant shared an experience in which she had to take time away from her sport to provide adequate care for her grandmother. As a result of caregiving responsibilities, participants did not have time to fulfill their social and academic commitments. Because of the additional caretaking burden on their time, participants described struggling to fulfill their social and academic obligations. Anxiety about caregiving burdens arose when participants felt overwhelmed by their caregiving responsibilities. Participants also wondered if they were doing “enough,” reflecting some of the pressure of cultural expectations reinforced by their parents. However, consistent with the caregiving literature, participants painted a complex picture of the caregiving experience. While they described increasing levels of stress, many participants also described caregiving as a way of giving back to their loved ones who had previously cared for them.

These preliminary results indicate a need for further research to explore how adolescent caregivers experience caregiving expectations in ways that are different from or similar to adult family caregivers and identify some of the unique needs of adolescents in terms of their social and emotional development during a critical time in their lives. For example, how can adolescent caregivers’ social and emotional needs be met in their environments, including school? How are adolescent Hispanic women caregivers similar and different to other caregiving populations? What are the unique needs of male adolescent caregivers? What are the academic supports that would facilitate adolescents in providing caregiving in a way that is rewarding and builds self-efficacy while avoiding some of the negative consequences of caregiving? How do adults who were previously adolescent caregivers describe their experience? What are the implications of care recipients’ social connectedness, or lack thereof, on the caregiving that they need? Adolescent caregivers may benefit from a variety of potential supports to offset the increased stress, so that they and their family and loved ones may have a caregiving experience that is as positive as possible for everyone.

Given that female Hispanic adolescents are considered a “hidden” population,¹ researching and addressing this group can allow for more effective mental health resources. Future research looking into caregiving and the Hispanic community can inform improved mental health services and resources that include the unique needs of Hispanic adolescent women. According to the Centers for Disease and Control (CDC), caregiving is an emerging public health issue, so “caregivers need recognition and support to do the vital work of caring for older adults and people with disabilities or chronic health conditions.”¹⁰ Future studies will enhance the current caregiving literature by including the unique cultural contexts of specific populations. When “hidden” populations become more visible to the research community, our knowledge base and potential to support all families will expand. Additional research will help inform support for all caregivers so that families can ultimately thrive.

Acknowledgement

The authors gratefully acknowledge the support of the AP Research Program at Birmingham Community Charter High School, and lead teacher Ms. Lindsay Humphrey.

Conflict of Interest

The authors have no conflict of interest to declare.

Funding

This work was not funded by any source internal or external to the authors’ institutions.

References

1. Diaz N, Siskowski C, Connors L. Latino Young Caregivers in the United States: Who are they and what are the Academic Implications of this Role? Child & Youth Care Forum. 2007; 36(4): 131-140. https://doi.org/10.1007/s10566-007-9040-4
2. Haley WE, Roth DL, Howard G, et al. Caregiving Strain and Estimated Risk for Stroke and Coronary Heart Disease Among Spouse Caregivers. Stroke. 2010; 41(2): 331-336. https://doi.org/10.1161/STROKEAHA.109.568279
3. McCullagh E, Brigstocke G, Donaldson N, et al. Determinants of caregiving burden and quality of life in caregivers of stroke patients. Stroke. 2005; 36(10): 2181-2186. https://doi.org/10.1161/01.STR.0000181755.23914.53
4. Greene J, Cohen D, Siskowski C, et al. The Relationship Between Family Caregiving and the Mental Health of Emerging Young Adult Caregivers. Journal of Behavioral Health Services & Research. 2017; 44(4): 551-563. https://doi.org/10.1007/s11414-016-9526-7
5. Ellard-Gray A, Jeffrey NK, Choubak M, et al. Finding the Hidden Participant: Solutions for Recruiting Hidden, Hard-to-Reach, and Vulnerable Populations. International Journal of Qualitative Methods. 2015; 14(5): 1609406915621420. https://doi.org/10.1177/1609406915621420
6. Sultan S, Fatima S, Kanwal F. The Extent of Burden and Wellbeing Among Caregivers of Cardiac Patients: Perceived Social Support as Mediator. Pakistan Heart Journal. 2018; 51(1): 25-29. https://pkheartjournal.com/index.php/journal/article/view/519/511
7. Laura Carrillo-Cervantes A, Arturo Medina-Fernández I, Carreño-Moreno S, et al. Loneliness, Anxiety, Depression, and Adoption of the Role of Caregiver of Older Adults with Chronic Diseases during COVID-19. 2022; 22(3): 1-17. https://doi.org/10.5294/aqui.2022.22.3.4
8. Schulz R, Sherwood PR. Physical and Mental Health Effects of Family Caregiving. The American Journal of Nursing. 2008; 108(9 Suppl): 23-27. https://doi.org/10.1097/01.NAJ.0000336406.45248.4c
9. Jarden A, Roache A. What Is Wellbeing? International Journal of Environmental Research and Public Health. 2023; 20(6): 5006. https://doi.org/10.3390/ijerph20065006
10. Division of Population Health & Division of National Center for Chronic Disease Prevention and Health Promotion. (2022, September 1). Supporting Caregivers | CDC. https://www.cdc.gov/aging/publications/features/supporting-caregivers.htm
11. Galvan T, Gudiño OG. Impact of Youth Problem Type on Specific Dimensions of Caregiver Strain in Latino Families. Child & Youth Care Forum. 2020; 49(5): 759-767. https://doi.org/10.1007/s10566-020-09554-5