RESUMO
BACKGROUND: Parkinson's disease (PD) caregivers, particularly in Latin America, may experience high levels of affiliate stigma due to their association with a person having a disability. The most common measure used of this construct in the literature, the Affiliate Stigma Scale, was validated using non-standard and questionable methods. OBJECTIVE: The purpose of this study was to investigate the factor structure and psychometric properties of the Spanish version of the Affiliate Stigma Scale with PD caregivers in Mexico using more widely accepted psychometric approaches including confirmatory and exploratory factor analyses (CFAs, EFAs). METHODS: A sample of 148 PD caregivers from Mexico completed this measure, as well as indices of caregiver burden and anxiety. RESULTS: Initial CFAs revealed that the data did not fit either the originally proposed one-factor or three-factor structures. An EFA was then conducted which was unable to discern any factor structure. Upon instituting a stepwise removal alpha-if-item-deleted process, a 5-item Affiliate Stigma Scale Spanish Short Form was retained with an adequate Cronbach's alpha, good convergent validity, and a Short Form CFA generally indicating adequate fit. CONCLUSIONS: The new Spanish Affiliate Stigma Scale Short Form holds promise for more appropriately measuring affiliate stigma likely in general but particularly in Spanish and among PD caregivers. The Short Form can assist not only in assessing levels of caregiver affiliate stigma, but in creating novel interventions to help support caregivers and decrease stigma.
Assuntos
Cuidadores , Doença de Parkinson , Humanos , Psicometria , México , Estigma Social , Inquéritos e Questionários , Reprodutibilidade dos TestesRESUMO
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.
Assuntos
Doença de Parkinson , Idoso , Cuidadores , Efeitos Psicossociais da Doença , Comparação Transcultural , Humanos , México , Estados UnidosRESUMO
Informal caregivers are critical in the care of individuals with Parkinson's disease (PD) and spend substantial time providing care, which may be associated with negative caregiver outcomes such as burden and mental health issues. Although research in the United States and Europe has generally supported these relations, there is very limited research on PD caregiving in Latin America. The current study examined the following connections in a sample of PD caregivers from the United States (N = 105) and Mexico (N = 148): (a) PD-related impairments (motor and nonmotor symptoms) and caregiver burden, (b) caregiver burden and caregiver mental health, and (c) PD-related impairments and mental health through caregiver burden. Study results uncovered significant relations among PD-related impairments, caregiver burden, and caregiver mental health. Further, caregiver burden fully mediated the relation between PD-related impairments and caregiver mental health at both study sites. Findings highlight a number of important intervention targets for caregivers and families, including caregiver burden and mental health.