Parkinson’s family dynamics and caregiver sense of coherence: A family‐systems approach to coping in Mexico and the United States

Abstract Objective The population of individuals with Parkinson’s disease (PD) is growing in Mexico and the United States, and there is an increasing need for family members to provide caregiving. This study examined the connections between family dynamics and coping, or sense of coherence, among PD caregivers in Mexico (n = 148) and the United States (n = 105). Methods Caregivers completed measures of family dynamics and sense of coherence across indices of comprehensibility, manageability, and meaningfulness. Results Although caregivers in Mexico and the United States had similar levels of sense of coherence and family dynamics reflecting strengths/adaptability and being overwhelmed with difficulties, caregivers in Mexico had worse disrupted communication. Family dynamics explained: 24.2% of the variance in caregiver comprehensibility in the United States and 17.5% in Mexico; 34.1% in manageability in the United States and 23.5% in Mexico; and 22.6% in meaningfulness in the United States and 22.7% in Mexico (all Ps < 0.001). In both Mexico and the United States, family strengths/adaptability uniquely predicted caregiver comprehensibility, manageability, and meaningfulness. Being overwhelmed with difficulties uniquely predicted comprehensibility in Mexico and manageability and meaningfulness in the United States. Conclusion The development of family‐systems interventions for PD caregivers to improve family strengths/adaptability and help families deal with difficulties may increase caregiver coping.


| INTRODUC TI ON
Parkinson's disease (PD) is a neurodegenerative disease characterized by motor symptoms, including tremors, limb rigidity, bradykinesia (ie, slow movement), and, later in the course of the disease, postural instability (ie, trouble balancing and falls). 1,2 Individuals with PD also experience a variety of non-motor symptoms, including cognitive, neuropsychiatric, sleep, autonomic, and olfactory dysfunction and disturbances. 1 There are over half a million individuals with PD in the United States, 3 and around 125 000 in Mexico. 4 Though PD is a disease of unknown etiology, both environmental and genetic factors are believed to play a role in its development. 5 Diagnosis of PD is complicated, as it is diagnosed based on clinical symptom clusters. 6 Therefore, individuals with PD and their caregivers may be left to manage PD-related non-motor symptoms (eg, mood, sleep, and gastrointestinal issues) alone, until the cardinal motor symptoms are present, leading to initiation of medical care. After diagnosis and beyond, the progressive nature of the disease requires caregivers to provide increasing care over time.
PD caregiving duties include providing instrumental support (eg, helping with dressing and bathing), emotional support, and informational support (eg, coordinating care and managing medications). 7 This care can be time-consuming and, as a result, PD caregivers may not be able to spend as much time with friends and family, resulting in social isolation. 8 Compared to the general population, PD caregivers have a significantly lower quality of life and mental health, [9][10][11] with spousal PD caregivers experiencing more episodes of chronic illness than non-caregiver spouses 8 and PD caregivers experiencing poor-quality sleep. 7 Numerous studies have documented negative psychological outcomes, such as anxiety and depression, as being directly associated with perceived burden of PD caregivers. 7,10,[12][13][14][15][16][17] While maintenance of caregiving responsibilities over time can lead directly to negative outcomes for PD caregivers, stress associated with caregiving can be present even at the early stages of the disease. 18 Additionally, PD caregivers may face stigma due to feelings of shame and pity surrounding the disease and its symptoms. 19 Caregivers may ultimately end up feeling burned out when their caregiving duties go beyond their resources, and this could lead to institutionalization of the individual with PD. 7,20 Therefore, it is important to identify caregiver strengths and factors influencing coping ability, so that caregivers can continue to fulfill their critical role.
Given the impact of caregiving on caregivers of individuals with PD, researchers have begun trying to identify factors that may serve as buffers for negative mental and physical health outcomes for PD caregivers. In a study of PD caregivers in Spain, coping responses were predictive of caregivers' and care recipients' psychological adjustment as well as quality of life of caregivers. 21 In addition to coping styles or responses, there is a body of literature evaluating an individual's outlook and self-efficacy regarding comprehensibility, manageability, and meaningfulness of stressful life events, also known as sense of coherence (SOC). 22 From an SOC standpoint, comprehensibility is the feeling that one's world and environment make sense or are consistent; manageability is the feeling that there are adequate resources to meet demands; and meaningfulness is the feeling that the demands are worth the time and effort. 23,24 In PD caregivers, a low SOC has been found to be one of the most important predictors of caregiver burden. 13 Similarly, in caregivers of individuals with dementia, caregivers' lower SOC predicted higher anxiety, depression, and burden. 25 SOC is also a strong predictor of health-related quality of life in a general sample of informal caregivers. 26 When considering the association of SOC with vital caregiver outcomes, it is important to consider how SOC may develop and interact in different ways cross-culturally.
Qualitative research suggests that, while PD caregivers face many challenges, family support is an important factor for the caregiving experience. 27 Since most PD caregivers are spouses or other family members, family dynamics can predict or be a buffer for important caregiver outcomes. Family dynamics describe how families conduct their lives and relationships. 28 Aspects of family dynamics that are considered particularly important for caregiver outcomes are strengths and adaptability within the family, the sense of feeling overwhelmed by difficulties, and disrupted communication. 28 Previous studies have shown that family dynamics are a good predictor of caregiver mental health and strengths in caregivers of individuals with other neurological conditions. For example, family dynamics were associated with both resilience and SOC in Argentinian dementia caregivers, with family problems predicting both resilience and SOC, empathy predicting resilience, and communication predicting SOC. 29 In other groups of caregivers of individuals with neurological conditions (ie, dementia or traumatic brain injury) across Latin America, family dynamics have predicted caregiver depression, 30,31 stress, 31 satisfaction with life, 31,32 and burden. [31][32][33] In general, healthier family dynamics are associated with stronger caregiver mental health as well as care-recipient mental health; however, one study found that family dynamics predicted many more caregiver mental health outcomes than care-recipient mental health outcomes. 30 Less is known about family dynamics among familial caregivers of individuals with PD.
Most work evaluating the mental and physical health outcomes of PD caregivers has focused on populations of caregivers in the United States and Western Europe. However, less is known about PD caregivers in Mexico and the cross-cultural differences that may impact the caregiving role and coping ability for those caregivers. There are several cultural values that may influence how PD caregivers approach and internalize their caregiving role. 34 For instance, familismo is a value within Latin American cultures that encompasses an emphasis on respecting elders, 35 relying on other family members, and being obligated to others within the family. 36 Due to familismo, a PD caregiver in a Latin American family may feel stress or guilt associated with not meeting the expectations of their family. 37 On the other hand, familismo could allow a PD caregiver within a Latin American family to perceive their role as less burdensome than someone without that cultural value. 38 In the same vein, a study of college-aged adults demonstrated that family functioning (ie, family dynamics) did not directly predict willingness to care for a family member; however, family dynamics indirectly predicted willingness to care through family values. 39 Therefore, cultural family values may contribute to the relationship between family dynamics and caregiver outcomes for PD caregivers.
Twice as many individuals will be living with PD in 2030 as there were in 2005, 40 resulting in an increasing need to examine cultural differences in the caregiving role to facilitate understanding and support for the diverse, growing number of PD caregivers. Given that healthy family dynamics have been shown to be an important element of coping in diverse samples of caregivers, the purpose of the present study was to examine the connections between family dynamics and SOC, or coping ability, of PD caregivers differentially in the United States and Mexico. The study is also the first, to our knowledge, to study these constructs in PD caregivers and cross-culturally.

| Participants
At specialty PD clinics at major public universities in both the  Table 1.

| Procedure
Following protocol approval from both institutions' institutional review boards, caregivers from PD clinics in Mexico and the United States were recruited through various means, including: direct contact, phone, email, flyers, and word of mouth. Informal caregivers who accompanied patients to medical appointments at the clinics were also provided information about the study. After providing informed consent, caregivers completed self-report questionnaires in the clinics (often while the individual with PD was being seen for appointments) assessing family dynamics, caregiver SOC, and demographic information.

| Correlation matrix
A correlation matrix was generated to examine the bivariate relationships among the three types of family dynamics and the three types of caregiver SOC, differentially by site ( Table 2). The correlation matrix suggested that family dynamics and caregiver SOC were strongly positively correlated at both sites, and all family dynamics were positively correlated with all forms of SOC, without noticeable magnitude differences by site.

| Site comparisons
A series of analyses of variance (ANOVAs) compared overall levels of family dynamics and caregiver SOC by site (     Notably, the Strengths and Adaptability subscale was the single largest unique predictor of PD caregiver SOC for both sites.

| CLINIC AL IMPLIC ATIONS
Results from the current study suggest that family dynamics play an

| Limitations and future directions
Although this study is among the first to investigate associations be- Researchers interested in investigating the causal nature of these associations could utilize longitudinal cross-lagged panel designs in order to more appropriately measure and test for causal links between family dynamics and SOC. Lastly, as discussed above, the measure of family dynamics used in the current study (SCORE- 15) has not been validated for use in Spanish-speaking populations and may not fully capture cultural norms in communication and other aspects of healthy family relationships. Future research would benefit from more closely investigating cross-cultural differences in family dynamics and their differential impact on caregiver mental and physical health, as well as on broader family outcomes.

| CON CLUS ION
The current study investigated the associations between aspects of

CO N FLI C T S O F I NTE R E S T
The authors report no conflicts of interest.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data used to support the findings of this study are available from the corresponding author upon request.