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Article

Caregiver Characteristics of Adults with Acute Traumatic Brain Injury in the United States and Latin America

1
Department of Physical Medicine & Rehabilitation, University of Texas Southwestern Medical Center, Dallas, TX 75390, USA
2
TIRR Memorial Hermann Brain Injury Research Center, Houston, TX 77030, USA
3
Department of Physical Medicine & Rehabilitation, UT Health Sciences Center at Houston, Houston, TX 77030, USA
4
Department of Psychology, Virginia Commonwealth University, Richmond, VA 23284, USA
5
Department of Physical Medicine and Rehabilitation, Virginia Commonwealth University, Richmond, VA 23284, USA
6
Central Virginia Veterans Affairs Health Care System, Richmond, VA 23249, USA
7
Virginia Commonwealth University Health System, Richmond, VA 23284, USA
8
Sheltering Arms Institute, Richmond, VA 23233, USA
9
Department of Physical Medicine and Rehabilitation, Spaulding Rehabilitation Hospital, Boston, MA 02129, USA
10
Department of Communication Sciences and Disorders, Northeastern University, Boston, MA 02115, USA
11
Department of Physical Medicine & Rehabilitation, Rutgers-New Jersey Medical School, Newark, NJ 07101, USA
12
Kessler Foundation, East Hanover, NJ 07936, USA
13
Department of Physical Medicine & Rehabilitation, JFK Johnson Rehabilitation Institute, Hackensack Meridian Health, Edison, NJ 08820, USA
14
Baylor Scott & White Institute for Rehabilitation, Dallas, TX 75246, USA
15
BioCruces Bizkaia Health Research Institute, 48903 Barakaldo, Spain
16
IKERBASQUE, Basque Foundation for Science, 48009 Bilbao, Spain
17
Department of Cell Biology and Histology, University of the Basque Country, 48940 Leioa, Spain
*
Author to whom correspondence should be addressed.
Int. J. Environ. Res. Public Health 2022, 19(9), 5717; https://doi.org/10.3390/ijerph19095717
Submission received: 31 March 2022 / Revised: 29 April 2022 / Accepted: 5 May 2022 / Published: 7 May 2022
(This article belongs to the Special Issue Research on Informal Caregivers)

Abstract

:
Objectives: To compare characteristics of caregivers of adults with acute traumatic brain injury (TBI) in the U.S. and Latin America (Mexico and Colombia). Design: Secondary data analysis of two cohorts. Cohort 1: English-speaking caregivers of adults with TBI in the U.S. (n = 80). Cohort 2: Spanish-speaking caregivers of adults with TBI in Mexico or Colombia (n = 109). Results: Similarities between the U.S. and Latin American caregiver groups, respectively, were: predominantly women (81.3%, 81.7%, respectively); spouses/domestic partners (45%, 31.2%); and motor vehicle accident (41.5%, 48.6%) followed by fall etiologies (40%, 21.1%). Differences between U.S. and Latin American caregivers were: age (49.5 years, 41.5 years, p < 0.001); employment status ((Χ52 = 59.63, p < 0.001), full-time employment (63.7%, 25.7%), homemaker (2.5%, 31.2%), and retired (17.5%, 1.8%)); violence-related etiology (2.5%, 15.6%); and severity of depressive symptoms (M = 7.9, SD = 5.8; M = 5.8, SD = 5.7; p = 0.014). Conclusions: TBI caregivers in the U.S. were older and employed full-time or retired more often than those in Latin America. Violence-related etiology was nearly five times more common in Latin America, raising concerns for potential implications of post-traumatic stress and family adjustment after injury. Although both groups likely could use mental health support, this was particularly true of the U.S. cohort, maybe due to differential demographics, mechanisms of injury, or family and community support.

1. Introduction

Traumatic brain injury (TBI) is the leading cause of death and disability in young people worldwide [1]. In Latin America, there are 909 TBIs per 100,000 persons annually [2], whereas in the U.S. and Canada there are 1299 TBIs per 100,000 persons annually [3]. Reasons for higher mortality in low- and middle-income countries (LMICs) include lack of injury prevention regulations and higher frequency of risk factors associated with TBI (e.g., young age, poverty, and violence) [4,5,6]. Clinical care for TBI in LMICs presents unique challenges including long transit times from injury to hospital, a high proportion of motorcycle and pedestrian accidents, lack of standardized medical care, and limited rehabilitation services [3,6,7,8]. Further, access to clinical care can be further complicated in LMICs, such as many in Latin America, where 30.1% of individuals live below the poverty line [9] as compared to higher income countries, such as the U.S., where 11.4% of the population lives below the poverty line [10,11].
TBI occurs globally, affecting not only the individual who sustained the injury but also those close to them (e.g., family, partners, and friends). After moderate-to-severe injury, those in a person with TBI’s personal network often assume a role of caregiver or care partner, supporting and assisting the individuals with TBI with ongoing functional needs and activities that they themselves can no longer manage independently. Caregiver burden associated with this support is well recognized internationally, with some evidence that burden increases over time [12,13]. Many caregivers report being ill-prepared to take on a caregiver role [14,15]. Clinical care challenges translate into greater needs for care and support, which often fall to caregivers. Individuals who survive a TBI often experience cognitive (e.g., attention deficits, memory issues, language difficulties), emotional (e.g., emotional regulation difficulties, anxiety, depression), and social (e.g., inappropriate social and behavioral) symptoms, requiring ongoing support [16]. Approximately two thirds of needs and activities of individuals with TBI are provided by family or friends after hospital discharge [17]. Despite this, caregivers of adults with TBI, in both the U.S. and Latin America, often report unmet needs, including lack of resources, resulting in caregiver strain and poor health [18,19,20,21]. Caring for and supporting an individual with TBI can result in an overall reduced quality of life [22,23].
Caregivers also bring their own histories, rituals, and traditions to the caregiving role, and while caregivers provide care worldwide, cultural norms differentially impact characteristics of caregivers and their caregiving roles. For example, familism, the importance of placing family needs before individual interests, is valued significantly more in Latin America than in the U.S. [24]. In contrast to U.S. communities, some of which view caring for elders as an obligation and a role that family members struggle to assume, Latino communities often view caring for elders as an honor and a role that family members more willingly assume [25]. Despite these cultural differences, existing studies on caregiver needs and characteristics primarily focus on individuals in high-income regions (e.g., U.S), whereas caregivers in LMICs (i.e., Latin America) have not received similar attention [10].
While caregiver burden is a universally documented consequence of TBI, cross-cultural comparisons of TBI caregivers are infrequent. Insight into cultural caregiving universalities and differences would inform needed caregiver-centered education, counseling, training, and other supports. As a first step in providing this much-needed insight, our objective was to compare personal characteristics and care recipient factors between caregivers of adults admitted to inpatient rehabilitation for TBI in the United States (U.S.) and Latin America (Mexico and Colombia). To date, no research has yet to compare the characteristics of TBI caregivers across these global regions, nor to examine potential differences in their depressive symptoms. Potential differences in these variables by global region could highlight the unique characteristics and needs of TBI caregivers through a cross-cultural lens, which would better help tailor services for these medically underserved but critical group of individuals.

2. Methods

2.1. Design and Participants

This was a secondary data analysis of cohorts from two studies [7,26,27]. Cohort 1 included English-speaking caregivers of adults with acute TBI in the U.S. (n = 80) recruited between November 2018 and June 2021. Cohort 2 included Spanish-speaking caregivers of adults with acute TBI in Mexico or Colombia (n = 109) recruited between July 2014 and June 2017. Support services—for both individuals with TBI and their caregivers—are highly variable, both in the U.S. and Latin America. There is tremendous variability across countries, states, regions, and managed care approaches; highly detailed data on specific services and supports received by participants were unavailable. However, it could broadly be stated that individuals with TBI from the U.S. had the opportunity to receive somewhat more comprehensive inpatient rehabilitation services (e.g., occupational therapy, neuropsychology, etc.) than those from Latin America. In both global regions, most informal caregiving after discharge relies on unpaid work of family members, and there are few, if any, formal support services or governmental designations for caregivers. In both parent studies, all participants provided informed consent, and all study procedures were approved and supervised by each participating site’s Institutional Review Board.
Cohort 1: English-speaking caregivers of adults with acute TBI in the U.S. (TBIMS).
Caregivers of individuals with TBI in the U.S. were recruited as part of a large study examining the feasibility of a problem-solving intervention from three Traumatic Brain Injury Model Systems (TBIMS) [28] Centers (in Texas and New Jersey) prior to their care recipient’s discharge from inpatient rehabilitation. Caregivers had to (a) be over 18 years old, (b) have longer than a one-year relationship with the care recipient, (c) be able to communicate fluently in English, (d) be cognitively able to make decisions and provide informed consent, and (e) not be in a legal dispute with family over the individual’s capacity to be a caregiver. Caregivers completed the survey, as part of the baseline assessment of the parent study, in person at the rehabilitation centers or remotely via telephone or electronic questionnaire.
Cohort 2: Spanish-speaking caregivers of adults with acute TBI in Mexico or Colombia (n = 109).
TBI caregivers from Latin America were recruited as part of a larger study examining TBI caregiver needs over the acute hospitalization time period and several months after discharge. Caregivers were recruited from three hospitals in Mexico City, Mexico (n = 68) and Cali (n = 21) and Neiva (n = 20), Colombia. Caregivers had to (a) be related to a person with TBI aged 18 or older via blood or marriage and/or be a close friend, (b) live in the household with the person with TBI, (c) be able to communicate orally in Spanish, and (d) be the primary caregiver providing active daily care for the person with TBI. They were excluded if they had a history of neurological conditions, serious psychiatric disorders, or current and serious alcohol or drug abuse. All caregivers completed the survey orally while the person with TBI was still in the hospital.

2.2. Measures

Upon their enrollment in both studies, caregivers provided their age, gender, relationship with the care recipient, marital status, employment status, and their care recipient’s TBI etiology. Participants also completed the Patient Health Questionnaire 9 (PHQ-9). The PHQ is a 9-item measure of depressive symptoms experienced in the past two weeks, validated in both English and Spanish [29,30]. Caregivers endorsed items on a 0–3 scale with 0 indicating that they experienced symptoms “not at all” in the past two weeks and 3 indicating they have experienced them “nearly every day.” Total scores for the PHQ range from 0–27, with scores of 0–4 indicating no depression, 5–9 indicating mild depression, 10–14 indicating moderate depression, 15–19 indicating moderately severe depression, and 20+ indicating severe depression [29].

2.3. Data Analysis

We calculated summary statistics to characterize caregivers in each cohort, including means and standard deviations for age and depressive symptoms and numbers and percentages for all other variables. We compared age and depressive symptoms between cohorts using unpaired t-tests. Categorical variables were compared using chi-square tests.

3. Results

See Table 1 for all summary and group comparison statistics. U.S. caregivers were significantly older than Latin American caregivers (d = 0.57). Employment status differed significantly, with most U.S. caregivers being employed full-time followed by retired, whereas the most common employment status for Latin American caregivers was homemaker followed by full-time and part-time employment. TBI etiologies in the two cohorts different significantly. The most common etiologies in both cohorts were motor vehicle accidents and falls, though falls occurred more frequently in the U.S. than Latin America. Violence-related etiologies were much more common in Latin America compared to the U.S. Caregivers in both samples endorsed mild depressive symptoms, but those in the U.S. endorsed significantly greater depressive symptom severity (d = 0.37).

4. Discussion

This study compared characteristics of caregivers of adults with acute TBI in the U.S. and Latin America. Both caregiving groups tended to be predominantly women and spouses/domestic partners of the person with TBI. The mechanisms of injury in both groups tended to be motor vehicle accidents followed by falls, though violence was a more common etiology in Latin America. Caregivers in the U.S. tended to be older than those in Latin America and more often had full-time employment or were retired, whereas those in Latin America more so tended to be homemakers and also showed lower levels of depression symptoms.
The finding that caregivers were equally highly likely to be women in both samples generally suggests that traditional gender roles surrounding caregiving may be operating in both global regions with women more often assuming caregiving roles than men. This is consistent with previous research finding that across a wide range of disabilities and chronic health conditions, women are the family members who tend to take on caregiving roles [31,32]. Although this has been shown to be particularly true in Latin America given rigid gender roles and other traditional duties for women within families [33], the current study did not find that women were more likely to be caregivers in Latin America vs. the U.S. This could in part be due to the region of the U.S. where the data were collected (Texas) which also may have strong traditional gender roles. The finding that there were no global differences in marital status of the caregiver may similarly reflect comparable gender roles across the specific regions.
For both people with TBI and their caregivers, the experience of brain injury confers elevated risk for negative mental health outcomes across many populations and cultural contexts [18,34,35,36,37,38,39,40]. Among the mental health concerns that can develop, PTSD is commonly comorbid with TBI [41]. The Latin American community may be particularly vulnerable to trauma-based outcomes, given the five-times higher rates of violence as a mechanism of injury relative to the U.S, even as the posttraumatic effects of injury due to violence reverberate throughout other members of the family. There is evidence to suggest that participation in inpatient rehabilitation for TBI can mitigate negative posttraumatic outcomes, though these services are not consistently available in Latin American health care systems and rarely extend to family caregivers or others who might experience vicarious trauma [19]. Although the effects of violence-related TBI on caregivers are studied predominantly in the context of Veteran samples or military-service-related injuries [42,43], these studies suggest that caregivers are at risk for negative outcomes associated with burden and emotional functioning—and possibly secondary trauma [44,45]. Although we assessed symptoms of depression among caregivers, we did not assess symptoms of posttraumatic stress, which is especially important both among people with a history of TBI related to violence and their caregivers.
Conversely, although caregivers in both the U.S. and Latin America could benefit from mental health support for depression, this may be particularly true for U.S. caregivers. There are several potential reasons that U.S. caregivers in our study may have reported more severe depressive symptoms, including (but not limited to) factors related to symptom-reporting (e.g., stigma of depression, not wanting to be seen as “complaining”) or to cultural roles. Often learned from the family, Latinos tend to suffer without complaint (stoicism) to maintain levels of functioning. Individuals who “complain” about fulfilling social duties sometimes are regarded as weak, unable to bear suffering with courage and pride [46]. Additionally, the expectation to sacrifice oneself for the care of loved ones (marianismo) can further impact reports of depression due to the social stigma surrounding mental health issues and help-seeking behaviors [47]. For example, familism—the importance of placing family needs before individual interests—is valued to a greater degree in Latin America than in the U.S. [24]. In contrast to U.S. communities, some of which view caring for elders as an obligation and a role that family members struggle to assume, Latino communities sometimes view caring for elders as an honor and a role that family members willingly assume [25]. The heavy influence of familism has led to many Latin American caregivers, whether they currently reside in Latin America or the U.S., not even to self-identify as caregivers [48]. In Latin America, considering cultural implications that women are expected to assist the family, female caregivers may also feel more prepared for caregiving roles than men [22]. Men have reported higher caregiver burden than women, suggesting the need for caregiver interventions that are gender-informed [22]. Therefore, ongoing work is needed to identify how culture-based gender roles interact with other cultural values, such as familism, to affect caregivers’ mental health.
Caregivers in the U.S. were more frequently employed full-time in the current study, whereas Latin American caregivers were more often homemakers, unemployed, or employed part-time. This may result in more difficulty balancing life roles for U.S. caregivers. Balancing work and caregiving can be highly demanding and requires individuals to divert time, energy, and financial resources to caregiving [49]. Balancing life roles between family and work is well-discussed in the literature, as working individuals are increasingly caring for children, elders, and family members with disabilities [50]. Additionally, caregivers in the U.S. tended to be older in comparison to those from Latin America. Older caregivers are reported to have poorer health and more physical distress and to engage less often in self-care compared to younger caregivers [51,52].
Falls account for an increasing number of TBIs as the population ages [53] (70% of all TBIs in people over 65 [53]); almost half of all TBI-related hospitalizations in the U.S. are now related to falls, surpassing motor vehicle accidents [54]. Epidemiological studies in other parts of the world reflect a similar shift in the etiology of TBI toward falls in concert with an increasingly aging population [55,56], though motor vehicle accidents continue to be the most common mechanism of TBI in LMICs [57]. This is consistent with our findings that, while falls were the second most common cause of injury in both cohorts, they were far more common in the U.S. than in Latin America. This may have a significant impact on healthcare utilization as older adults are also more likely to accumulate more comorbid conditions that can have an adverse effect on their recovery from TBI and result in more prolonged hospitalizations [53]. The implications from older patients with increasing medical complexity being admitted to inpatient rehabilitation facilities and the impact this may have on other patients remain to be seen. Additionally, access to acute inpatient rehabilitation facilities varies in different parts of the world, and an increasing global aging population may prove challenging for regional health care systems [58].
Violence is a leading cause of injury among people with TBI around the world [10] and a leading cause of death in many Latin American countries, including Colombia and Mexico [13,59]. Violence was an etiological factor that affected five times as many people with TBI in the Latin American sample compared to the U.S. sample. A recent systematic scoping review of TBI as a result of violence concluded there are consistent pre-injury risk factors associated with violent injury [60], including male gender, problematic substance use, interactions with the legal system, unemployment, and—only in the U.S.—being non-White; although long-term outcomes were comparable to other mechanisms of injury, people with violence-related TBI tended to have lower levels of functional independence during the inpatient rehabilitation phase of recovery, as well as lower levels of community participation productivity one year post-injury [60]. A previous study using the TBIMS national database found that violence-related injuries tend to be associated with higher levels of disability and caregiver burden [61]. However, aside from this study and studies related to marital stability following TBI [62,63], the Bates et al. review (2016) [60] concluded that there was a notable lack of research regarding the effects of violence-related injuries on informal caregivers.

Limitations and Future Directions

The results of this study should be interpreted in the context of the following limitations. First, the Latin America sample was from two Latin American countries (Mexico and Colombia), and as a result the findings cannot necessarily be generalized to caregivers of other Latin American countries. Additionally, the U.S. sample included caregivers who identified as Hispanic, which makes speculation about differences related to cultural values less clear. We cannot broadly generalize cultural values to all individuals from a particular ethnic group, as “culture” does not equate with racial or ethnic group. Individuals within the broader Hispanic/Latino population—both in Latin American and in the U.S.—represent a diversity of cultures and health-related needs [64]. Additionally, Hispanic/Latino caregivers who move to or who were born in the U.S. are influenced to assimilate into the U.S. culture, especially the younger ones [48]—approximately 27% of family caregivers in the U.S. identify as Hispanic/Latinx and millennial [65]. Cultural differences between U.S. and foreign-born Latino caregivers can shape the exchanges between care recipients and caregivers uniquely [65]. Second, it is common in Latin American countries that younger people assume caregiving roles; therefore, the results may not generalize to caregivers younger than 18 years of age. Third, some of the differences found in this study between the two groups could be explained by variables not available for analyses, such as time as a caregiver, TBI severity, patient access to rehabilitation services, social support, family income, reimbursement for caregiving or other caregiver supports, and access to community resources and other support. Fourth, in this study, we only explored select sociodemographic and injury characteristics and depression symptoms. Future studies should explore other similarities and differences in mental health outcomes (e.g., burden, anxiety, stress, etc.) and psychosocial characteristics (e.g., quality of life, satisfaction with life, social support, etc.). Fifth, this was a cross-sectional study, and it is unknown whether the presence of mild symptoms of depression is the same in the two samples over time. Future longitudinal studies should be conducted looking at similarities and differences in mental health outcomes over time between these two groups. Lastly, inclusion criteria for the two cohorts were not identical, with the two most notable differences being that in the Latin American cohort, caregivers had to be residing with the care recipient and be the primary person responsible for assisting the care recipient with daily activities, whereas those in the U.S. cohort did not have to reside with the person with TBI or had to be responsible in any way for the health or well-being of the person with TBI. The relationship between residence and depression status is complex and has been found to differ as a function of White versus Black race [66], so further study is necessary to examine how residing with a care recipient affects caregivers across different cultural backgrounds. Because participant enrollment rate was not systematically tracked across all participants, it is unknown how these variables play into which caregivers decided to enroll in the study.

5. Conclusions

While need for caregiver support post-TBI is universal, caregiver characteristics are not. In Latin America, caregivers post-TBI were more varied in their primary life roles, whereas U.S. caregivers more often juggled caregiving responsibilities with full-time employment. Caregivers in the U.S. were older and employed full-time or retired more often than those in Latin America. Their care recipients were also far more likely to be injured in a fall, which may reflect an older age among individuals with TBI as well. Violence-related etiology (excepting gunshot wound) was nearly five times more common in Latin America than the U.S., raising concerns for potential implications of posttraumatic stress recovery and family adjustment after injury [67,68]. Though both groups endorsed mild depressive symptoms and could likely benefit from mental health support, caregivers in the U.S. reported more symptoms than those in Latin America. This is consistent with past research suggesting that the impact of caregiver strain on mood may differ across cultures in part due to differential demographics and mechanisms of injury. These findings generally suggest that caregivers from the U.S. may have particularly accentuated levels of depression symptoms and therefore are especially likely to benefit from evidence-based, caregiver-tailored depression treatment. Conversely, because individuals with TBI in Latin America were more likely to sustain their injury via violence, posttraumatic stress assessment and treatment may be needed for caregivers in this global region. Because caregivers in the U.S. were more likely to be employed, interventions geared toward helping caregivers manage work life and caregiving life may be helpful. Future research is needed on the development and implementation of these types of caregiver interventions in order to improve outcomes for both TBI caregivers and their care recipients.

Author Contributions

Conceptualization, S.B.J. and P.B.P.; methodology, S.B.J., P.B.P., JL. and J.C.A.-L.; formal analysis, S.B.J. and P.B.P.; investigation, S.B.J., P.B.P., J.L. and J.C.A.-L.; data curation, S.B.J., P.B.P., J.L. and J.C.A.-L.; writing—original draft preparation, S.B.J., P.B.P., D.W.K., T.M.O.-P., S.H., B.W., J.L., K.L., L.C. and J.C.A.-L.; writing—review and editing, S.B.J. and P.B.P.; visualization, S.B.J. and P.B.P.; supervision, S.B.J. and P.B.P.; project administration, S.B.J. and P.B.P. All authors have read and agreed to the published version of the manuscript.

Funding

Data collection was supported by NIDILRR (grant numbers: Kessler 90DPTB0003; NTX-TBIMS 90DPTB0013; JFK 90DPTB0014) and Grant #R21TW009746 from the Fogarty International Center of the National Institutes of Health and in part by the Department of Veterans Affairs. Additional support for coauthors was provided by NIDILRR (grant numbers: Spaulding/Harvard TBIMS: 90DPTB0011; TIRR 90DPTB0016).

Institutional Review Board Statement

The study was conducted in accordance with the Declaration of Helsinki and approved by the Institutional Review Board of each collaborating university.

Informed Consent Statement

Informed consent was obtained from all subjects involved in the study.

Data Availability Statement

Data are available from the corresponding author upon request.

Acknowledgments

This work was a collaboration of the TBI Model Systems Caregiver SIG supported by the National Institute for Disability, Independent Living, and Rehabilitation Research (NIDILRR) funding. This work was presented as an abstract and poster at the American Congress of Rehabilitation Medicine Annual Conference (virtual) in 2021.

Conflicts of Interest

The authors declare no conflict of interest.

References

  1. Bruns, J., Jr.; Hauser, W.A. The epidemiology of traumatic brain injury: A review. Epilepsia 2003, 44 (Suppl. 10), 2–10. [Google Scholar] [CrossRef] [PubMed]
  2. Dewan, M.C.; Rattani, A.; Gupta, S.; Baticulon, R.E.; Hung, Y.-C.; Punchak, M.; Agrawal, A.; Adeleye, A.O.; Shrime, M.G.; Rubiano, A.M.; et al. Estimating the global incidence of traumatic brain injury. J. Neurosurg. 2019, 130, 1080–1097. [Google Scholar] [CrossRef] [PubMed] [Green Version]
  3. Collaborators, M.C.T. Predicting outcome after traumatic brain injury: Practical prognostic models based on large cohort of international patients. BMJ 2008, 336, 425–429. [Google Scholar] [CrossRef] [PubMed] [Green Version]
  4. Puvanachandra, P.; Hyder, A.A. Traumatic brain injury in Latin America and the Caribbean: A call for research. Salud Publica Mex. 2008, 50 (Suppl. 1), S3–S5. [Google Scholar] [CrossRef] [PubMed] [Green Version]
  5. Puvanachandra, P.; Hyder, A.A. The burden of traumatic brain injury in asia: A call for research. Pak. J. Neurol. Sci. 2009, 4, 27–32. [Google Scholar]
  6. Hyder, A.A.; Wunderlich, C.A.; Puvanachandra, P.; Gururaj, G.; Kobusingye, O.C. The impact of traumatic brain injuries: A global perspective. NeuroRehabilitation 2007, 22, 341–353. [Google Scholar] [CrossRef] [Green Version]
  7. Cariello, A.N.; Perrin, P.B.; Rodríguez-Agudelo, Y.; Olivera Plaza, S.L.; Quijano-Martinez, M.C.; Arango-Lasprilla, J.C. A Multi-Site Study of Traumatic Brain Injury in Mexico and Colombia: Longitudinal Mediational and Cross-Lagged Models of Family Dynamics, Coping, and Health-Related Quality of Life. Int. J. Environ. Res. Public Health 2020, 17, 6045. [Google Scholar] [CrossRef]
  8. Hofman, K.; Primack, A.; Keusch, G.; Hrynkow, S. Addressing the growing burden of trauma and injury in low- and middle-income countries. Am. J. Public Health 2005, 95, 13–17. [Google Scholar] [CrossRef]
  9. ECLAC: The Region Has Underestimated Inequality. Published 28 November 2019. Available online: https://www.cepal.org/en/pressreleases/eclac-region-has-underestimated-inequality (accessed on 3 December 2021).
  10. Bonow, R.H.; Barber, J.; Temkin, N.R.; Videtta, W.; Rondina, C.; Petroni, G.; Lujan, S.; Alanis, V.; La Fuente, G.; Lavadenz, A.; et al. The Outcome of Severe Traumatic Brain Injury in Latin America. World Neurosurg. 2018, 111, e82–e90. [Google Scholar] [CrossRef]
  11. Shrider, E.A.; Kollar, M.; Chen, F.; Semega, J. Income and Poverty in the United States: 2020. 14 September 2021. Available online: https://www.census.gov/library/publications/2021/demo/p60-273.html (accessed on 3 December 2021).
  12. Brooks, N.; Campsie, L.; Symington, C.; Beattie, A.; McKinlay, W. The effects of severe head injury on patient and relative within seven years of injury. J. Head Trauma Rehabil. 1987, 2, 1–13. [Google Scholar] [CrossRef]
  13. Vos, T.; Lim, S.S.; Abbafati, C.; Abbas, K.M.; Abbasi, M.; Abbasifard, M.; Abbasi-Kangevari, M.; Abbastabar, H.; Abd-Allah, F.; Abdelalim, A.; et al. Global burden of 369 diseases and injuries in 204 countries and territories, 1990–2019: A systematic analysis for the Global Burden of Disease Study 2019. Lancet 2020, 396, 1204–1222. [Google Scholar] [CrossRef]
  14. Ponsford, J.; Olver, J.; Ponsford, M.; Nelms, R. Long-term adjustment of families following traumatic brain injury where comprehensive rehabilitation has been provided. Brain Inj. 2003, 17, 453–468. [Google Scholar] [CrossRef] [PubMed]
  15. Hajek, A.; König, H.H. Impact of informal caregiving on loneliness and satisfaction with leisure-time activities. Findings of a population-based longitudinal study in germany. Aging Ment. Health 2019, 23, 1539–1545. [Google Scholar] [CrossRef] [PubMed]
  16. Belanger, H.G.; Silva, M.A.; Donnell, A.J.; McKenzie-Hartman, T.; Lamberty, G.J.; Vanderploeg, R.D. Utility of the Neurobehavioral Symptom Inventory As an Outcome Measure: A VA TBI Model Systems Study. J. Head Trauma Rehabil. 2017, 32, 46–54. [Google Scholar] [CrossRef] [PubMed]
  17. Lieshout, K.; Oates, J.; Baker, A.; Unsworth, C.A.; Cameron, I.D.; Schmidt, J.; Lannin, N.A. Burden and Preparedness amongst Informal Caregivers of Adults with Moderate to Severe Traumatic Brain Injury. Int. J. Environ. Res. Public Health 2020, 17, 6386. [Google Scholar] [CrossRef] [PubMed]
  18. Gulin, S.L.; Perrin, P.B.; Stevens, L.F.; Villaseñor-Cabrera, T.J.; Jiménez-Maldonado, M.; Martínez-Cortes, M.L.; Arango-Lasprilla, J.C. Health-related quality of life and mental health outcomes in Mexican TBI caregivers. Fam. Syst. Health 2014, 32, 53–66. [Google Scholar] [CrossRef] [PubMed]
  19. Arango-Lasprilla, J.C.; Quijano, M.C.; Aponte, M.; Cuervo, M.T.; Nicholls, E.; Rogers, H.L.; Kreutzer, J. Family needs in caregivers of individuals with traumatic brain injury from Colombia, South America. Brain Inj. 2010, 24, 1017–1026. [Google Scholar] [CrossRef]
  20. Gan, C.; Gargaro, J.; Brandys, C.; Gerber, G.; Boschen, K. Family caregivers’ support needs after brain injury: A synthesis of perspectives from caregivers, programs, and researchers. NeuroRehabilitation 2010, 27, 5–18. [Google Scholar] [CrossRef]
  21. Rotondi, A.J.; Sinkule, J.; Balzer, K.; Harris, J.; Moldovan, R. A Qualitative Needs Assessment of Persons Who Have Experienced Traumatic Brain Injury and Their Primary Family Caregivers. J. Head Trauma Rehabil. 2007, 22, 14–25. [Google Scholar] [CrossRef]
  22. Pugh, M.; Perrin, P.B.; Arango-Lasprilla, J.C. Predicting caregiver burden over the first 4 months after acute traumatic brain injury in Latin America: A multi-country study. Brain Inj. 2021, 35, 769–777. [Google Scholar] [CrossRef]
  23. Arango-Lasprilla, J.; Nicholls, E.; Cabrera, T.V.; Drew, A.; Jimenez-Maldonado, M.; Martinez-Cortes, M. Health-related quality of life in caregivers of individuals with traumatic brain injury from Guadalajara, Mexico. J. Rehabil. Med. 2011, 43, 983–986. [Google Scholar] [CrossRef] [Green Version]
  24. Knight, G.P.; Mazza, G.L.; Carlo, G. Trajectories of familism values and the prosocial tendencies of Mexican American adolescents. Dev. Psychol. 2018, 54, 378–384. [Google Scholar] [CrossRef] [PubMed]
  25. National Hispanic Council on Aging. 2017 Status of Hispanic Older Adults: Insights from the Field—Caregivers Edition; National Hispanic Council on Aging: Washington, DC, USA, 2017; Available online: https://diverseelders.org/resource/2017-status-of-hispanic-older-adults-insights-from-the-field-caregivers-edition/ (accessed on 6 May 2022).
  26. Juengst, S.B.; Silva, V.; Goldin, Y.; Cicerone, K.; Lengenfelder, J.; Chiaravalloti, N.; Driver, S.; Mellick, D.; Dart, G.; Kew, C.L.; et al. Care partner problem solving training (CP-PST) for care partners of adults with traumatic brain injury during inpatient rehabilitation: Study protocol for a multisite, randomized, single-blind clinical feasibility trial. Contemp. Clin. Trials 2019, 80, 9–15. [Google Scholar] [CrossRef] [PubMed]
  27. McKee, G.B.; Perrin, P.B.; Agudelo, Y.R.; Plaza, S.L.O.; Quijano-Martinez, M.C.; Ohayagha, C.; Kuzu, D.; Cariello, A.N.; Arango-Lasprilla, J.C. Relationship Satisfaction and Depression after Traumatic Brain Injury: An Actor-Partner Interdependence Model of Patients and Caregivers in Mexico and Colombia. Am. J. Phys. Med. Rehabil. 2020, 99, 1032–1038. [Google Scholar] [CrossRef] [PubMed]
  28. Dijkers, M.P.; Harrison-Felix, C.; Marwitz, J.H. The Traumatic Brain Injury Model Systems: History and Contributions to Clinical Service and Research. J. Head Trauma Rehabil. 2010, 25, 81–91. [Google Scholar] [CrossRef] [PubMed]
  29. Kroenke, K.; Spitzer, R.L.; Williams, J.B. The PHQ-9: Validity of a brief depression severity measure. J. Gen. Intern. Med. 2001, 16, 606–613. [Google Scholar] [CrossRef] [PubMed]
  30. Wulsin, L.; Somoza, E.; Heck, J. The Feasibility of Using the Spanish PHQ-9 to Screen for Depression in Primary Care in Honduras. Prim. Care Companion J. Clin. Psychiatry 2002, 4, 191–195. [Google Scholar] [CrossRef] [PubMed]
  31. Perrin, P.B.; Panyavin, I.; Morlett, A.; Aguayo, A.; Macias, M.A.; Rabago, B.; Arango, J.A. Disproportionate Burden of Care: Gender Differences in Mental Health, Health-Related Quality of Life, and Social Support in Mexican Multiple Sclerosis Caregivers. Behav. Neurol. 2015, 2015, 283958. [Google Scholar] [CrossRef] [Green Version]
  32. De Paula, T.; Lagana, K.; Gonzalez-Ramirez, L. Mexican Americans. In Culture & Nursing Care: A Pocket Guide; University of California San Francisco Nursing Press: San Francisco, CA, USA, 1996; pp. 203–221. [Google Scholar]
  33. Galanti, G.A. The Hispanic family and male-female relationships: An overview. J. Transcult. Nurs. 2003, 14, 180–185. [Google Scholar] [CrossRef]
  34. Baker, A.; Barker, S.; Sampson, A.; Martin, C. Caregiver outcomes and interventions: A systematic scoping review of the traumatic brain injury and spinal cord injury literature. Clin. Rehabil. 2017, 31, 45–60. [Google Scholar] [CrossRef]
  35. Griffin, J.M.; Lee, M.K.; Bangerter, L.R.; Van Houtven, C.H.; Friedemann-Sánchez, G.; Phelan, S.M.; Carlson, K.F.; Meis, L.A. Burden and mental health among caregivers of veterans with traumatic brain injury/polytrauma. Am. J. Orthopsychiatry 2017, 87, 139–148. [Google Scholar] [CrossRef] [PubMed]
  36. Jorge, R.E.; Arciniegas, D.B. Mood Disorders After TBI. Psychiatr. Clin. N. Am. 2014, 37, 13–29. [Google Scholar] [CrossRef] [PubMed] [Green Version]
  37. Nonterah, C.W.; Jensen, B.J.; Perrin, P.; Stevens, L.F.; Cabrera, T.V.; Jiménez-Maldonado, M.; Arango-Lasprilla, J.C. The influence of TBI impairments on family caregiver mental health in Mexico. Brain Inj. 2013, 27, 1287–1293. [Google Scholar] [CrossRef]
  38. Phelan, S.M.; Griffin, J.M.; Hellerstedt, W.L.; Sayer, N.A.; Jensen, A.C.; Burgess, D.J.; van Ryn, M. Perceived stigma, strain, and mental health among caregivers of veterans with traumatic brain injury. Disabil. Health J. 2011, 4, 177–184. [Google Scholar] [CrossRef] [PubMed]
  39. Rogers, J.M.; Read, C.A. Psychiatric comorbidity following traumatic brain injury. Brain Inj. 2007, 21, 1321–1333. [Google Scholar] [CrossRef]
  40. Yeh, T.-C.; Chien, W.-C.; Chung, C.-H.; Liang, C.-S.; Chang, H.-A.; Kao, Y.-C.; Yeh, H.-W.; Yang, Y.-J.; Tzeng, N.-S. Psychiatric Disorders After Traumatic Brain Injury: A Nationwide Population-Based Cohort Study and the Effects of Rehabilitation Therapies. Arch. Phys. Med. Rehabil. 2020, 101, 822–831. [Google Scholar] [CrossRef]
  41. Tanev, K.S.; Pentel, K.Z.; Kredlow, M.A.; Charney, M.E. PTSD and TBI co-morbidity: Scope, clinical presentation and treatment options. Brain Inj. 2014, 28, 261–270. [Google Scholar] [CrossRef]
  42. Brickell, T.A.; Lippa, S.M.; French, L.M.; Gartner, R.L.; Driscoll, A.E.; Wright, M.M.; Lange, R.T. Service needs and health outcomes among caregivers of service members and veterans following TBI. Rehabil. Psychol. 2019, 64, 72–86. [Google Scholar] [CrossRef]
  43. Malec, J.F.; Van Houtven, C.; Tanielian, T.; Atizado, A.; Dorn, M.C. Impact of TBI on caregivers of veterans with TBI: Burden and interventions. Brain Inj. 2017, 31, 1235–1245. [Google Scholar] [CrossRef]
  44. Bride, B.E.; Figley, C.R. Secondary Trauma and Military Veteran Caregivers. Smith Coll. Stud. Soc. Work 2009, 79, 314–329. [Google Scholar] [CrossRef]
  45. Ben Arzi, Z.S.N. Secondary traumatization among wives of PTSD and post-concussion casualties: Distress, caregiver burden and psychological separation. Brain Inj. 2000, 14, 725–736. [Google Scholar] [CrossRef] [PubMed]
  46. Hollingshead, N.A.; Ashburn-Nardo, L.; Stewart, J.C.; Hirsh, A.T. The Pain Experience of Hispanic Americans: A Critical Literature Review and Conceptual Model. J. Pain 2016, 17, 513–528. [Google Scholar] [CrossRef] [PubMed] [Green Version]
  47. Washburn, M.; Brewer, K.; Gearing, R.; Leal, R.; Yu, M.; Torres, L. Latinos’ Conceptualization of Depression, Diabetes, and Mental Health–Related Stigma. J. Racial Ethn. Health Dispar. 2021, 10, 1–11. [Google Scholar] [CrossRef]
  48. Cruz, Y.; Le, O. Why We Must Support Hispanic/Latinx Caregivers. Generations Today. Available online: http://generations.asaging.org/why-we-must-support-hispaniclatinx-caregiversJuly-August2021 (accessed on 3 December 2021).
  49. Li, A.; Shaffer, J.; Bagger, J. The psychological well-being of disability caregivers: Examining the roles of family strain, family-to-work conflict, and perceived supervisor support. J. Occup. Health Psychol. 2015, 20, 40–49. [Google Scholar] [CrossRef] [PubMed] [Green Version]
  50. Chapman, N.J.; Ingersoll-Dayton, B.; Neal, M.B. Balancing the multiple roles of work and caregiving for children, adults, and elders. In Job Stress in a Changing Workforce: Investigating Gender, Diversity, and Family Issues; American Psychological Association: Washington, DC, USA, 1994; pp. 283–300. [Google Scholar] [CrossRef]
  51. Anderson, L.A.; Edwards, V.J.; Pearson, W.S.; Talley, R.C.; McGuire, L.C.; Andresen, E.M. Adult Caregivers in the United States: Characteristics and Differences in Well-being, by Caregiver Age and Caregiving Status. Prev. Chronic Dis. 2013, 10, E135. [Google Scholar] [CrossRef] [PubMed]
  52. Sabo, K.; Chin, E. Self-care needs and practices for the older adult caregiver: An integrative review. Geriatr. Nurs. 2021, 42, 570–581. [Google Scholar] [CrossRef] [PubMed]
  53. Cusimano, M.D.; Saarela, O.; Hart, K.; Zhang, S.; McFaull, S.R. A population-based study of fall-related traumatic brain injury identified in older adults in hospital emergency departments. Neurosurg. Focus 2020, 49, E20. [Google Scholar] [CrossRef]
  54. Centers for Disease Control and Prevention. Surveillance Report of Traumatic Brain Injury-Related Hospitalizations and Deaths by Age Group, Sex, and Mechanism of Injury—United States, 2016 and 2017. Published Online 2021. Available online: https://www.cdc.gov/traumaticbraininjury/pdf/TBI-surveillance-report-2016-2017-508.pdf (accessed on 6 May 2022).
  55. Kureshi, N.; Erdogan, M.; Thibault-Halman, G.; Fenerty, L.; Green, R.S.; Clarke, D.B. Long-Term Trends in the Epidemiology of Major Traumatic Brain Injury. J. Community Health 2021, 46, 1197–1203. [Google Scholar] [CrossRef]
  56. Brazinova, A.; Rehorcikova, V.; Taylor, M.; Buckova, V.; Majdan, M.; Psota, M.; Peeters, W.; Feigin, V.L.; Theadom, A.; Holkovic, L.; et al. Epidemiology of Traumatic Brain Injury in Europe: A Living Systematic Review. J. Neurotrauma 2021, 38, 1411–1440. [Google Scholar] [CrossRef] [Green Version]
  57. Karthigeyan, M.; Gupta, S.K.; Salunke, P.; Dhandapani, S.; Wankhede, L.S.; Kumar, A.; Singh, A.; Sahoo, S.K.; Tripathi, M.; Gendle, C.; et al. Head injury care in a low- and middle-income country tertiary trauma center: Epidemiology, systemic lacunae, and possible leads. Acta Neurochir. 2021, 163, 2919–2930. [Google Scholar] [CrossRef]
  58. Ageing. Available online: https://www.who.int/health-topics/ageing (accessed on 16 December 2021).
  59. Cruz, J.M. State and criminal violence in Latin America. Crime Law Soc. Chang. 2016, 66, 375–396. [Google Scholar] [CrossRef]
  60. Bates, A.; Matthews, S.; Simpson, G.; Bates, L. Brain Injury as the Result of Violence: A Systematic Scoping Review. J. Soc. Work. Disabil. Rehabil. 2016, 15, 305–331. [Google Scholar] [CrossRef] [PubMed]
  61. Hanks, R.A.; Wood, D.L.; Millis, S.; Harrison-Felix, C.; Pierce, C.A.; Rosenthal, M.; Bushnik, T.; High, W.M.; Kreutzer, J. Violent traumatic brain injury: Occurrence, patient characteristics, and risk factors from the traumatic brain injury model systems project. Arch. Phys. Med. Rehabil. 2003, 84, 249–254. [Google Scholar] [CrossRef] [PubMed]
  62. Arango-Lasprilla, J.C.; Ketchum, J.M.; Dezfulian, T.; Kreutzer, J.S.; O’Neil-Pirozzi, T.M.; Hammond, F.; Jha, A. Predictors of marital stability 2 years following traumatic brain injury. Brain Inj. 2008, 22, 565–574. [Google Scholar] [CrossRef] [PubMed]
  63. Kreutzer, J.S.; Marwitz, J.H.; Hsu, N.; Williams, K.; Riddick, A. Marital stability after brain injury: An investigation and analysis. NeuroRehabilitation 2007, 22, 53–59. [Google Scholar] [CrossRef] [PubMed]
  64. Barrera, M.; Castro, F.G.; Strycker, L.A.; Toobert, D.J. Cultural adaptations of behavioral health interventions: A progress report. J. Consult. Clin. Psychol. 2013, 81, 196–205. [Google Scholar] [CrossRef] [PubMed]
  65. Flinn, B. Millennials: The emerging generation of family caregivers. Innov. Aging 2018, 2 (Suppl. 1), 240. [Google Scholar] [CrossRef]
  66. Siegler, I.C.; Brummett, B.H.; Williams, R.B.; Haney, T.L.; Dilworth-Anderson, P. Caregiving, residence, race, and depressive symptoms. Aging Ment. Health 2010, 14, 771–778. [Google Scholar] [CrossRef] [Green Version]
  67. Cariello, A.N.; Perrin, P.B.; Agudelo, Y.R.; Plaza, S.L.O.; Quijano-Martínez, M.C.; Trujillo, M.A.; Arango-Lasprilla, J.C. Predictors of longitudinal depression trajectories after traumatic brain injury in Latin America: A multi-site study. NeuroRehabilitation 2020, 46, 205–212. [Google Scholar] [CrossRef]
  68. Bown, D.; Belli, A.; Qureshi, K.; Davies, D.; Toman, E.; Upthegrove, R. Post-traumatic stress disorder and self-reported outcomes after traumatic brain injury in victims of assault. PLoS ONE 2019, 14, e0211684. [Google Scholar] [CrossRef]
Table 1. Participant Characteristics.
Table 1. Participant Characteristics.
CharacteristicU.S. Caregivers (English)
n = 80
Latin American Caregiver (Spanish)
n = 109
Statistical Comparison
Age, mean (SD)49.5 (14.0)41.5 (13.9)t187 = 3.90, p < 0.001 *
Gender (English)/Sex (Spanish), n (%) Χ12 = 0.0049, p = 0.94
Men/Male15 (18.8)20 (18.3)
Women/Female65 (81.3)89 (81.7)
Role-type of Caregiver, n (%) Χ42 = 10.48, p = 0.03 *
Spouse/partner36 (45.0)34 (31.2)
Parent 18 (22.5)29 (26.6)
Child19 (23.8)21 (19.3)
Sibling2 (2.5)14 (12.8)
Other relationship4 (5.1)11 (10.1)
Injury Mechanism for TBI Survivor, n (%) Χ52 = 14.98, p = 0.01 *
Motor vehicle accident33 (41.5)53 (48.6)
Fall32 (40.0)23 (21.1)
Pedestrian or bicycle accident6 (7.5)10 (9.2)
Violence2 (2.5)17 (15.6)
Gunshot wound2 (2.5)2 (1.8)
Other/Unknown5 (6.3)4 (3.7)
Marital status, n (%) Χ32 = 6.96,
Single12 (15.0)19 (17.4)p = 0.07
Married/Domestic Partner56 (70.0)60 (55.1)
Divorced/Separated11 (13.8)21 (19.3)
Other1 (1.3)9 (7.5)
Current employment status, n (%) Χ52 = 59.63, p < 0.001 *
Full-time51 (63.7)28 (25.7)
Part-time8 (10.0)22 (20.2)
Homemaker2 (2.5)34 (31.2)
Unemployed3 (3.8)18 (16.5)
Student2 (2.5)5 (4.6)
Pension/retired14 (17.5)2 (1.8)
Depression (PHQ)7.9 (5.8)5.78 (5.74)t186 = 2.48, p = 0.014 *
Note. * = p < 0.05.
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Juengst, S.B.; Perrin, P.B.; Klyce, D.W.; O’Neil-Pirozzi, T.M.; Herrera, S.; Wright, B.; Lengenfelder, J.; Lercher, K.; Callender, L.; Arango-Lasprilla, J.C. Caregiver Characteristics of Adults with Acute Traumatic Brain Injury in the United States and Latin America. Int. J. Environ. Res. Public Health 2022, 19, 5717. https://doi.org/10.3390/ijerph19095717

AMA Style

Juengst SB, Perrin PB, Klyce DW, O’Neil-Pirozzi TM, Herrera S, Wright B, Lengenfelder J, Lercher K, Callender L, Arango-Lasprilla JC. Caregiver Characteristics of Adults with Acute Traumatic Brain Injury in the United States and Latin America. International Journal of Environmental Research and Public Health. 2022; 19(9):5717. https://doi.org/10.3390/ijerph19095717

Chicago/Turabian Style

Juengst, Shannon B., Paul B. Perrin, Daniel W. Klyce, Therese M. O’Neil-Pirozzi, Susan Herrera, Brittany Wright, Jean Lengenfelder, Kirk Lercher, Librada Callender, and Juan Carlos Arango-Lasprilla. 2022. "Caregiver Characteristics of Adults with Acute Traumatic Brain Injury in the United States and Latin America" International Journal of Environmental Research and Public Health 19, no. 9: 5717. https://doi.org/10.3390/ijerph19095717

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