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
BACKGROUND AND OBJECTIVE: Research has documented the stigma that individuals with degenerative neurological diseases experience, but caregivers also experience stigma by association (i.e., affiliate stigma). In order to shed light on the stigma of caregivers of people with degenerative neurological diseases, the current study aimed to explore cross-cultural differences in the prevalence of Parkinson's disease (PD) caregiver affiliate stigma, as well as the relationship between PD symptoms and caregiver affiliate stigma. Applications for Alzheimer's disease are discussed. METHODS: Survey data were collected in PD clinics at public, academic medical centers. Informal caregivers of an individual with PD from the US (n = 105) and from Mexico (n = 148) participated in the study. Caregivers completed a questionnaire that included the MDS Unified PD Rating Scale to describe the symptoms of the individual with PD, as well as the Affiliate Stigma Scale and demographic information. RESULTS: A series of multiple regressions was run to examine whether PD symptoms were associated with affiliate stigma and if these differed by country. These regressions suggested that different patterns of PD symptoms predicted affiliate stigma in each country. Stigma was higher in the US compared to Mexico, and the relationship between bowel/bladder symptoms and affiliate stigma was significantly stronger in the US. CONCLUSION: Symptoms of individuals with neurodegenerative diseases are related to affiliate stigma experienced by caregivers, and these relationships may differ cross-culturally. Negative public attitudes concerning bowl and bladder issues and the physical symptoms that accompany PD remain a source of stigma for caregivers and families, particularly in the US. Interventions for caregivers of individuals with neurodegenerative diseases should include strategies for coping with stigma concerning bladder and bowel problems, as well as other physical and mental health issues.
Assuntos
Cuidadores/psicologia , Comparação Transcultural , Doença de Parkinson/psicologia , Estigma Social , Doença de Alzheimer/psicologia , Feminino , Humanos , Masculino , México , Pessoa de Meia-Idade , Inquéritos e Questionários/estatística & dados numéricos , Estados UnidosRESUMO
AIM: Neuropsychological normative data for Latin America have been recently published, and for Colombia, in particular, but longitudinal neuropsychological outcomes after stroke have not yet been examined in this global region. The purpose of the current study was to compare functioning of individuals with stroke in Colombia, South America during the first year post-stroke to healthy controls across neuropsychological assessments of memory, language, and visuoperceptual impairments. METHOD: A sample of 50 individuals with stroke (mean age = 51.58) and 50 matched healthy controls (mean age = 51.54) from Colombia were included in this study. Because of a lack of access to health services, individuals with stroke did not receive any inpatient or outpatient cognitive or behavioral rehabilitation. Participants were assessed on 10 visuoperceptual, language, and memory tasks at 3, 6, and 12 months. RESULTS: Trajectories of neuropsychological performance were significantly worse among individuals with stroke than healthy controls across every index. Further, hierarchical linear models suggested that although both individuals with stroke and controls generally improved over time on these assessments, the improvements among individuals with stroke were often of no greater magnitude than the improvements seen in controls, suggesting extremely low levels of rehabilitation gains in Colombia. Only three of the 10 neuropsychological assessments did a significant time*group interaction occur, suggesting greater gains for the stroke group than controls. CONCLUSION: These findings suggest profound disparities in post-stroke cognitive functioning in Colombia compared to other more developed global region and underscore the importance of comprehensive cognitive rehabilitation services for individuals with stroke in Colombia and other similar global regions. Implications for rehabilitation Because this study found only negligible cognitive improvements beyond practice effects over the first year after stroke in Colombia among individuals without access to acute rehabilitation, it is imperative that comprehensive cognitive rehabilitation services be implemented immediately during the acute rehabilitation period. Memory, language, and visuoperceptual training strategies can be implemented for people with stroke in underserved global regions as part of the standard of care for stroke rehabilitation. Cognitive rehabilitation strategies should be adapted into Spanish and pilot tested in Latin America to ensure cultural equivalence. Culturally competent cognitive rehabilitation strategies should be tailored based on varied educational and literacy levels.
Assuntos
Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral , Colômbia , Humanos , Idioma , Memória , Pessoa de Meia-Idade , Testes Neuropsicológicos , Acidente Vascular Cerebral/complicaçõesRESUMO
BACKGROUND: Previous literature has shown disparities between developing and developed regions in executive functioning, attention, and processing speed performance following stroke. Research on post-stroke longitudinal outcomes in Latin America specifically is almost nonexistent. OBJECTIVES: To assess spontaneous recovery among individuals with stroke in the absence of cognitive rehabilitation services in Colombia, South America during the first year post-stroke by comparing their functioning to that of healthy controls across executive functioning, attention, and processing speed at 3, 6, and 12 months. DESIGN: Cohort. SETTING: Stroke rehabilitation center at the regional hospital. PARTICIPANTS: A sample of 50 individuals with stroke and 50 matched healthy controls from Colombia were included in this study. Consistent with the healthcare resources in this region, participants did not receive any inpatient or outpatient cognitive rehabilitation. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Executive functioning, attention, and processing speed. RESULTS: Hierarchical linear models suggested improvements over time for both individuals with stroke and controls, but trajectories of neuropsychological performance were significantly lower for individuals with stroke. Only on one of nine outcomes was there a significant time*group interaction, suggesting greater gains for the stroke group than controls. CONCLUSIONS: These data suggest extremely minor spontaneous recovery among individuals with stroke in Colombia relative to practice effects in controls, and that apparent improvements in executive functioning after stroke were likely just due to practice effects. These findings underscore the bleak outcomes in cognitive functioning after stroke that occur in regions without cognitive rehabilitation.