Parkinson’s Disease (PD) is a common progressive neurodegenerative disorder that leads to both physical and cognitive impairment over time. Eventually, these impairments may include the loss of autonomy, and the individual may require the assistance of an informal caregiver. Informal caregivers are critical in the care of individuals with PD and spend substantial time providing care, which may be associated with negative caregiver outcomes such as burden, mental health issues, as well as poor family dynamics. Although research in the United States and Europe has generally supported these relations, there is very limited research on PD caregiving in Latin America. Given the rapidly aging population of Latin America, research suggests that the prevalence of PD is likely to increase substantially. Although cultural values such as familism may encourage informal caregiving in Latin America, very little is known about either PD patient or caregiver experiences in the region and how they may differ from those in the United States and Europe. As such, the current study built upon Pearlin’s caregiving stress process model to examine how PD-related impairments, caregiver burden and mental health, and family dynamics may differ between the United States and Mexico and to examine connections among the following variables in a sample of PD caregivers from the United States and Mexico: (a) PD-related impairments (motor and non-motor symptoms) and caregiver burden, (b) caregiver burden and caregiver mental health, (c) PD-related impairments and mental health through caregiver burden, and (d) family dynamics which may moderate these relations. The current study consisted of caregivers of individuals with PD (total N = 253) from the United States (N = 105) and Mexico (N = 148). A series of t-tests and mediational models were conducted to determine the connections among PD-related impairments, caregiver burden and mental health, and family dynamics. Results suggested that caregivers from the United States site experienced higher levels of caregiver burden, although there were no significant differences in caregiver mental health. Further, caregiver burden fully mediated the relation between PD-related impairments and caregiver mental health at both study sites, although family dynamics did not moderate these mediational models as hypothesized. Despite the importance of cultural values such as familism in Latin America, family dynamics explained more variance in the model at the United States site than at the Mexico site. Exploratory analyses found that caregivers from the Mexico site more frequently reported suicidal and self-injurious thoughts but did not find a significant disparity in self-reported gender of the caregiver. Overall, the current study identified significant relations among PD-related impairments, caregiver burden and mental health, and family dynamics among caregivers of individuals with PD from the United States and Mexico. Findings from the current study highlight a number of important interventions for caregivers and families, including caregiver burden and mental health, as well as family dynamics.

<p><strong>Purpose: </strong>Previous work demonstrates a link between poor child sleep and increased caregiver mental health symptoms. In particular, children with NGS are known to experience severe and persistent sleep difficulties. Few studies have examined the association between child sleep disturbances and caregiver internalizing symptoms across families affected by neurogenic syndromes. More specifically, no study has examined how sleep disturbances in children diagnosed with NGS impact caregiver internalizing symptoms severity across development (from infancy to school-age children), using a longitudinal framework and multilevel analyses<em>. </em>Thus, the current study aims to test the effect of child sleep duration on caregiver mental health changes over the course of development (child age, from infancy to school-age children) in a mixed cohort of families affected by neurogenetic syndromes and a sub-group of neurotypical children. <strong>Method: </strong>A total of 193 caregivers were recruited, via web-based support groups, syndrome research registries, and social networks, as part of a broader longitudinal study, the Early Phenotype Study. To measure child sleep duration and caregiver internalizing symptoms, parents completed the Brief Infant Sleep Questionnaire and the Depression, Anxiety, and Stress Scale, respectively, at each time point yielding a total of 718 observations. Separate multilevel models were conducted for caregiver depression, anxiety, and stress in relation to child sleep duration at the between- and the within-person level with child age as a moderator. <strong>Results: </strong>Results of the present study revealed a between-person main effect of child sleep duration on caregiver symptoms of depression and a within-person effect of child sleep duration on stress symptoms in caregivers. The moderating effect of child age was not statistically significant across models. <strong>Conclusions: </strong>Overall, findings of the current study support previous literature and suggest child sleep duration may provide us with information on who may be at greater risk of exhibiting greater symptoms of depression, drawing the importance of focusing on improving child sleep duration as a way to reduce caregiver mental health challenges. </p>

Submitted by Noeme Timbo (noeme.timbo@metodista.br) on 2017-01-24T17:24:35Z No. of bitstreams: 1 SamantaPLatanza.pdf: 1242599 bytes, checksum: 2083be454ea94334bdc863e263244707 (MD5) / Made available in DSpace on 2017-01-24T17:24:35Z (GMT). No. of bitstreams: 1 SamantaPLatanza.pdf: 1242599 bytes, checksum: 2083be454ea94334bdc863e263244707 (MD5) Previous issue date: 2016-09-19 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES / The illness of one family member has an effect on the whole family system and requires adaptation. It changes the routine, habits and customs of the family, especially for the one person who takes the role of the caregiver. Hence this study aims to describe the socio-cultural data of the care takers of psychiatric patients, as well as investigate the psychological dynamic, adaptive efficiency, quality of the sectors of human adaptation and perception of caregivers in relation to routine care. Method: This is a qualitative, exploratory and descriptive study, which investigates 25 participants, who are caregivers of psychiatric patients. The instruments used are the Adaptive Operational Diagnostic Self-Report Scale (EDAO-AR) and the Interview Script. The results showed that the caregiver's profile has as main characteristic the degree of kinship with the patient, mothers or spouses are predominant, primarily because they are women. Regarding the adaptive efficiency, it was identified that all caregivers have "Adaption Ineffectiveness" ranging from mild, moderate and severe. The caregiver's perceptions of difficulties and needs were identified as related to physical, mental and social overload and a range of feelings and expectations aroused in the relationship of care. Finally, it was found that the act of being a psychiatric patient, family caregiver brings on many changes in their life and at such context, it is understood that it is extremely important to identify the needs of caregivers to ease the burdens that affect and denouncing ineffective adaptation. / O adoecimento de um dos membros da família produz alterações em todo o sistema familiar e requer a necessidade de adaptação, pois modifica a rotina, hábitos e costumes, principalmente do familiar que assume o papel de cuidador. Neste sentido, este estudo teve por objetivos descrever dados socioculturais de pessoas que exercem a função de cuidadores familiares de pacientes psiquiátricos, investigar a dinâmica psicológica, a eficácia adaptativa, a qualidade dos setores da adaptação humana e a percepção destes cuidadores em relação à rotina de cuidados. Método: tratou-se de um estudo qualitativo, exploratório e descritivo, onde foram investigados 25 participantes, cuidadores familiares de paciente psiquiátrico. Foram empregados como instrumentos a Escala Diagnóstica Adaptativa Operacionalizada de Autorrelato (EDAO-AR) e o Roteiro de Entrevista. Os resultados identificaram que o perfil do cuidador tem como características principais o grau de parentesco em predomínio de mãe ou cônjuge, e por serem mulheres. Com relação à eficácia adaptativa, identificou-se que todos os cuidadores apresentaram “adaptação Ineficaz” que variou entre leve, moderada e severa e, nas percepções do cuidador foram identificadas necessidades e dificuldades relacionadas à sobrecarga física, psíquica e social e a uma gama de sentimentos e expectativas despertados na relação do cuidar. Por fim, identificou-se que o ato de ser cuidador familiar de paciente psiquiátrico acarreta em muitas mudanças de vida e ante tal contexto, entendeu-se que é de suma importância identificar as necessidades dos cuidadores para amenizar as sobrecargas que os acometem e que denunciam a adaptação ineficaz.