Cross‐cultural differences in Parkinson's disease caregiving and burden between the United States and Mexico

Abstract Introduction Given the rapidly aging population in both the United States and Mexico, rates of Parkinson's disease (PD) are likely to rise in both countries, suggesting that the number of individuals providing informal care will also increase, and the healthcare system will have to consider the burden this places upon caregivers. Therefore, the purpose of the current study was to examine differences in PD caregiving and burden between the United States and Mexico. Methods Data were collected from PD caregivers in the Parkinson's Clinic at the Hospital Civil Fray Antonio Alcalde in Guadalajara, Mexico (N = 148) and the Parkinson's and Movement Disorders Center at Virginia Commonwealth University in Richmond, Virginia (N = 105) regarding caregiver demographics and self‐reported burden. Results Despite considerably more time spent in caregiving duties, higher rates in unemployment or underemployment, and lower education levels, Mexican PD caregivers reported significantly less personal strain and role strain than did their United States counterparts. Even after controlling for these and other demographic differences between the two sites, the differences in caregiver burden remained. Conclusions Latino cultural values in Mexico encouraging the importance of caring for family members with PD and respecting elders may promote caregiving and even make it a point of cultural pride, helping to overcome potential negative effects on caregivers seen in the United States. The scientific and medical communities should view caregiving as a culturally embedded and potentially positive role, rather than predominantly as burdensome as frequently conceptualized in Western or Eurocentric cultures.


| INTRODUC TI ON
Parkinson's disease (PD) is a neurodegenerative illness affecting 1-2 individuals per 1,000 of the population (Tysnes & Storstein, 2017), or about 1% of those in the 65-69 age range and 1% to 3% of those aged 80 and above (Nussbaum & Ellis, 2003). Prevalence rates in Mexico for those aged 65 and older are similar at approximately 3.14 individuals with PD per 1,000 (Rodriguez-Violante, Velásquez-Pérez, & Cervantes-Arriaga, 2019). As increased age is the principal risk factor for developing PD and the exacerbation of PD symptoms (Hindle, 2010), the rising growth of the aging population in Latin America (Wong & Palloni, 2009)  Parkinson's disease is associated with gradual progression of physical symptoms (Shulman et al., 2016) and cognitive dysfunction (Petrou et al., 2015). Although PD is classified primarily as a movement disorder with motor symptoms typified by bradykinesia, resting tremor, and rigidity (Tysnes & Storstein, 2017), the neurodegeneration of specific regions of the brain involved in PD also leads to substantial neurobehavioral symptoms (Mandir & Vaughan, 2000).
As symptoms become more severe, the individual's ability to function independently lessens, often resulting in a loss of autonomy and necessitating increasing reliance on assistance from a caregiver (Shulman et al., 2008). Provision of this care may eventually entail loss of outside employment, sacrifice of social engagement, and a reduction in self-care for the care provider (Bhimani, 2014).
Over time, responsibilities of caregiving have been associated with a negative psychological state, termed caregiver burden (Mosley et al., 2017). A number of studies have identified associations between motor symptoms and caregiver burden (Lau & Au, 2011), but increasing attention has recently been given to the nonmotor symptoms of PD, which have also been associated with caregiver burden (Mosley et al., 2017). Research has suggested that caregiver burden is a particularly important construct among Mexican PD caregivers and has been linked directly with family dynamics and caregiver health-related quality of life (Trapp et al., 2019).
To date, very little research has examined PD in regions outside of North America and Europe. The majority of research conducted outside of these regions has focused on data derived from medical records or drug consumption data (Pringsheim, Jette, Frolkis, & Steeves, 2014). This is problematic for low-to middle-income countries, as these estimates inherently exclude individuals who are unable to obtain medical care or prescription drugs to treat PD (de Rijk et al., 1997). Further, these studies have also not considered the unique culturally determined treatment practices and varying access to care for PD throughout the world (Chiò, Magnani, & Schiffer, 1998). As such, there is a critical need to examine PD caregiving in diverse regions of the world, such as Latin America.
Given the rapidly aging population in both the United States (Marras et al., 2018) and Mexico (Cantu-Martinez et al., 2014), rates of PD are likely to rise in both countries, suggesting that the number of individuals providing informal care will also increase. Therefore, the purpose of the current study was to examine differences in PD caregiving and burden between the United States and Mexico. We hypothesized that there would be significant mean differences in (a) caregiver characteristics and (b) caregiver burden between the United States and Mexico. Furthermore, with more access to specialized PD treatments in the United States, it was hypothesized that caregivers at the United States site would report lower levels of burden than caregivers at the Mexico site. Alternatively, there was a possibility that with predominant cultural values such as familismo and marianismo, caregivers at the Mexico site would report lower levels of caregiver burden.

| Participants
Data were collected from PD caregivers in the Parkinson's Clinic  Table 1 for caregiver and care recipient demographic characteristics.

| Demographic information
Participants provided data regarding their age, sex, romantic relationship status, relationship to individual with PD, number of individuals who assist in providing care, months providing care, hours per week of care, and current occupation. They also reported on the age, sex, and months since PD diagnosis of the care recipient.

| Caregiver Burden
Caregiver burden was assessed with the 12-item Zarit Burden Inventory (ZBI) (Bedard et al., 2001). Participants select a response from 0 (Never) to 4 (Nearly Always) on a Likert-type scale, with higher scores corresponding to higher caregiver burden. Scores from each item are combined to create a total score ranging from 0 to 48. The ZBI (full version) has been validated for PD caregivers (Martinez-Martin et al., 2007) and also for Spanish speakers (Marin, 1996). The ZBI has two subscales which were used in the current study: Personal Strain (level of personal stress due to caregiving) and Role Strain (level of stress due to overload or role conflict). The scale for both samples in the current study showed good internal consistency (Mexico α = .86; United States α = .91).

| Procedure
Institutional Review Boards at Virginia Commonwealth University and Hospital Civil Fray Antonio Alcalde reviewed and approved the current study's research protocol. Research assistants used written and verbal advertising to recruit participants while they were in waiting rooms or after clinician referral post a medical appointment.
Informed consent was obtained from each participant prior to study enrollment. Eligible participants in the United States completed all study measures using pencil and paper, but due to the likely higher rate of illiteracy at the Mexico site, the study measures were administered orally by study staff.

| Data analyses
Potential demographic and burden differences between sites were analyzed using analyses of variance (ANOVAs), chi-square tests, and analyses of covariance (ANCOVAs) as appropriate.

| Demographic differences
Caregivers at the United States site were significantly older than caregivers at the Mexico site, F(1, 251) = 87.133, p < .001. There was a similar gender distribution for caregivers between sites, χ 2 (1) = 1.892, p = .169, with two-thirds to three-quarters of caregivers at both sites being female. There were significant differences in caregivers' romantic relationship status between sites, χ 2

| Caregiver burden differences
Results indicated that there were significant differences in personal To ensure these differences in caregiver burden were not due to the significant differences in caregiver and care recipient demographic variables between sites, two ANCOVAs were conducted, controlling for all variables shown to differ significantly by site.
Results indicated that the significant difference in personal strain

| D ISCUSS I ON
The current study examined differences in caregiver burden In Mexico, for example, individuals may be more likely to live in multigenerational homes, which may promote caregiving of parents.
In addition, marianismo and familismo may promote caregiving among women and other family members in Latin America. Given that marianismo encompasses a sense of responsibility to one's family and submissiveness to a woman's male spouse (Hubbell, 1993), it has been postulated that marianismo contributes to the sense of Similarly, the concept of familismo (familism) may influence roles, obligations, and expectations within families in Latin America (Zea, Quezada, & Belgrave, 1994). Familismo also emphasizes the importance of caring for one's family and their needs over one's own needs, as well as a respect for older individuals in the family (Ruiz & Ransford, 2012). Latino informal caregivers are less likely to institutionalize the individual they provide care for (Dilworth-Anderson, Williams, & Gibson, 2002) and are less likely to use formal support services (Dilworth-Anderson et al., 2002;Pinquart & Sörensen, 2005). Familismo may also be associated with positive outcomes in the caregiving context. For example, higher levels of familismo were associated with lower burden among one sample of Latino caregivers (Coon et al., 2004). When compared to individuals of other racial/ethnic groups, Latino informal caregivers have less desire to stop providing care and are more satisfied in their role as a caregiver (Phillips, de Ardon, Komnenich, Killeen, & Rusinak, 2000). Further, familismo may be a protective factor as other family members may be more likely to support the primary caregiver.
Caregivers from the Mexico site reported spending significantly more hours providing care each week than those from the United States site. This tendency seems to hold true in general, as a review of racial/ethnic differences after traumatic brain injury also found that Hispanic caregivers spent more time caregiving than White caregivers (Gary, Arango-Lasprilla, & Stevens, 2009 (Mickens et al., 2018), nearly 40 hr less than caregivers from the current sample. A more thorough investigation of caregiving activities among PD caregivers in Mexico may serve to explain the number of hours spent caregiving. The majority of studies on PD caregivers have found no (Martinez-Martin et al., 2008;Martínez-Martín et al., 2007;Shin, Lee, Youn, Kim, & Cho, 2012) or only weak associations (Kim et al., 2007;Razali, Ahmad, Rahman, Midin, & Sidi, 2011;Tew, Naismith, Pereira, & Lewis, 2013) between the amount of hours spent providing care and caregiver burden.
There are several potential reasons why caregivers in the United States sample reported greater levels of burden, despite caregivers in Mexico being at significant disadvantage across a number of demographic indices. At least one study has found that burden is greater among spousal caregivers (Viwattanakulvanid et al., 2014), which may partially explain the differences in caregiver burden, as over 90% of caregivers at the United States site were spouses while only 51.4% of caregivers at the Mexico site were spouses. However, the differences in burden in the current study still remained even when controlling for caregiver relationship to patient. It is also possible that caregivers in Mexico experienced lower burden as a result of providing care in the context of cultural factors such as marianismo, familismo, and respeto (respect). These cultural values encourage the importance of caring for the family as well as respecting elders (Neary & Mahoney, 2005), which may promote caregiving and even make it a point of cultural pride. As such, individuals at the Mexico site may view the opportunity to care for their loved one as meaningful and gratifying instead of burdensome.

| Limitations and future studies
This study was conducted in only two urban PD outpatient clinics.
As such, it may not be generalizable to PD caregivers in rural or suburban areas. As individuals in the later stages of PD are more likely to be institutionalized and caregiver burden is likely to be highest im- Finally, while the current study examined cross-cultural differences in caregivers' demographic characteristics and a previous article (Smith et al., 2019) examined the contributions of these demographics to burden, future studies would benefit from examining the relationships between the demographics and burden across the two countries in advanced statistical models (e.g., invariance models of caregiving characteristics and burden). Cultural values and/ or norms might have contributed to the site differences in caregiver demographics and burden found in the current study, and variables reflecting the role of culture were not included; by extension, cultural variables were not examined in invariance models that might differentially explain relations between demographics in burden between the United States and Mexico. If cross-national differences underscore the importance of culture, future studies could include additional statistical analyses with cultural value variables as covariates of or explanations for possible differences.

| CON CLUS ION
The results of the current study found that though there were significant differences in demographic variables for both caregivers and care recipients between the United States and Mexico sites, these demographic variables did not account for the differences in reported PD caregiver burden. Despite considerably more time spent in caregiving duties, higher rates in unemployment or underemployment, and lower education levels, Mexican PD caregivers reported significantly less personal strain and role strain than did their United States counterparts. The scientific and medical communities should view caregiving as a culturally embedded and potentially positive role, rather than predominantly as burdensome as frequently conceptualized in Western or Eurocentric cultures.

ACK N OWLED G M ENT
The authors would like to thank the participants who made this study possible.

CO N FLI C T S O F I NTE R E S T S
The authors have no conflicts of interests to declare.

AUTH O R CO NTR I B UTI O N
ERS, PBP, SKL, and TV involved in study design. ERS, SKL, and TV collected the data. ERS and PBP drafted the manuscript. ERS, PBP, and CMT statistically analyzed. PBP, CMT, SKL, and TV edited the manuscript.

PEER R E V I E W
The peer review history for this article is available at https://publo ns.com/publo n/10.1002/brb3.1753.

DATA AVA I L A B I L I T Y S TAT E M E N T
Data from this study are available by request from the corresponding author.