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1.
Sultan Qaboos Univ Med J ; 21(2): e266-e274, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-34221475

RESUMO

Objectives: The family caregivers of patients undergoing coronary artery bypass graft (CABG) surgery experience considerable physical and emotional distress. This study aimed to investigate the effect of an educational support programme on caregiver burden among the family caregivers of patients undergoing CABG surgery in Iran. Methods: This non-randomised controlled clinical trial was conducted from January to April 2017 at a cardiovascular centre in Tehran, Iran. A total of 80 family caregivers of patients undergoing CABG surgery were sequentially selected and non-randomly assigned to intervention and control groups. The control group received routine care, whereas the intervention group received additional education sessions at baseline, prior to surgery, the day after surgery and before discharge. Caregiver burden was compared at baseline and six weeks post-discharge using the Persian-language versions of the Caregiver Burden Inventory (CBI) and Katz Index of Independence in Activities of Daily Living (IADL). Results: A significant difference was observed between family caregivers in the control and intervention groups with regards to pre-post differences in mean CBI scores (+1.67 ± 19.23 versus +17.45 ± 9.83; P <0.001), with an effect size of -1.14. In addition, there was a significant increase in mean post-discharge IADL scores among CABG patients in the intervention group compared to the control group (4.42 ± 1.05 versus 3.07 ± 1.09; P <0.001). Conclusion: An educational support programme significantly reduced caregiver burden among the family members of patients undergoing CABG surgery in Iran. As such, in addition to routine care, healthcare providers should provide educational support to this population to help mitigate caregiver burden.


Assuntos
Atividades Cotidianas , Fardo do Cuidador/prevenção & controle , Cuidadores/educação , Ponte de Artéria Coronária , Família/psicologia , Adulto , Assistência ao Convalescente , Fardo do Cuidador/psicologia , Cuidadores/psicologia , Criança , Ponte de Artéria Coronária/efeitos adversos , Feminino , Humanos , Irã (Geográfico) , Masculino , Pessoa de Meia-Idade , Alta do Paciente
2.
Psico USF ; 26(2): 357-368, Apr.-June 2021. tab
Artigo em Inglês | LILACS-Express | LILACS, Index Psicologia - Periódicos | ID: biblio-1287610

RESUMO

The aim of this research was to investigate indicators of parental stress among caregivers of children with Cerebral Palsy. The study covered a total of 132 participants who responded to the following instruments: Sociodemographic Inventory, Gross Motor Function Classification System, and Parental Stress Index (PSI). Data were analyzed using descriptive statistics. The sample was composed mainly of mothers (97%); most of the children were classified under the most severe levels of motor impairment (61%). Regarding the PSI, almost half of the sample experienced high levels of parental stress (46.2%). The PSI domain with the highest percentage of caregivers with high stress was Parental Distress (60.6%). Most caregivers prioritize the needs of the child with Cerebral Palsy over their own needs more than they expected (90%). These results may support intervention strategies aimed at minimizing parental stress. (AU)


O objetivo desta pesquisa foi investigar indicadores de estresse parental entre cuidadores de crianças com paralisia cerebral. Participaram 132 cuidadores que responderam aos instrumentos: Inventário Sociodemográfico, Sistema de Classificação da Função Motora Grossa e Índice de Estresse Parental (PSI). Os dados foram analisados por meio de estatística descritiva. A amostra foi composta principalmente por mães (97%); a maioria das crianças apresentou grave comprometimento motor (61%). Em relação ao PSI, quase metade dos cuidadores apresentou altos níveis de estresse parental (46,2%). O domínio do PSI com maior percentual de cuidadores com alto estresse foi o Sofrimento Parental (60,6%). A maioria dos cuidadores prioriza as necessidades da criança com PC em detrimento das suas mais do que esperava (90%). Esses resultados podem subsidiar estratégias de intervenção com vistas a minimizar o estresse parental. (AU)


El objetivo de esta investigación fue estudiar indicadores de estrés parental entre los cuidadores de niños con Parálisis Cerebral. Participaron del estudio un total de 132 cuidadores que contestaron a los siguientes instrumentos: Inventario Sociodemográfico, Sistema de Clasificación de la Función Motora Gruesa e Índice de Estrés Parental (PSI). Los datos fueron analizados mediante estadística descriptiva. La muestra fue compuesta principalmente por madres (97%); la mayoría de los niños se clasificaron en los niveles más graves de discapacidad motora (61%). En relación al PSI, casi la mitad de los cuidadores presentó niveles elevados de estrés parental (46,2%). El dominio del PSI con mayor porcentaje de cuidadores con alto estrés fue el Sufrimiento Parental (60,6%). La mayoría de los cuidadores prioriza las necesidades del niño con parálisis cerebral en detrimento de sus propias necesidades, siendo más de lo esperado (90%). Estos resultados pueden respaldar las estrategias de intervención para minimizar el estrés parental. (AU)


Assuntos
Humanos , Masculino , Feminino , Lactente , Pré-Escolar , Criança , Adulto , Estresse Psicológico/psicologia , Paralisia Cerebral/psicologia , Fardo do Cuidador/psicologia , Fatores Socioeconômicos , Estudos Transversais , Cuidadores/psicologia
3.
J Alzheimers Dis ; 81(4): 1567-1578, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34057080

RESUMO

BACKGROUND: Dementia is commonly accompanied by neurobehavioral symptoms; however, the relationship between such symptoms and health-related outcomes is unclear. OBJECTIVE: To investigate the impact of specific neurobehavioral symptoms in dementia on healthcare resource use (HCRU), patient quality of life (QoL), and caregiver burden. METHODS: Data were taken from the 2015/16 Adelphi Real World Dementia Disease Specific Programme™, a point-in-time survey of physicians and their consulting dementia patients. Multiple regression analyses were used to examine associations between patient symptom groups and health-related outcomes. RESULTS: Each patient symptom group of interest (patients with agitation/aggression and related symptoms [AARS] with psychosis, patients with AARS without psychosis, and patients with other behavioral symptoms) had a positive association with HCRU variables (i.e., HCRU was greater), a negative association with proxy measures of patient QoL (i.e., QoL was decreased), and a positive association with caregiver burden (i.e., burden was greater) compared with patients with no behavioral symptoms (control group). The magnitude of effect was generally greatest in patients with AARS with psychosis. Regression analysis covariates that were found to be most often significantly related to the outcomes were dementia severity and the patients' living situation (i.e., whether they were in nursing homes or living in the community). CONCLUSION: Combinations of behavioral symptoms, particularly involving AARS plus psychosis, may have a detrimental impact on health-related outcomes such as HCRU, patient QoL, and caregiver burden in dementia. Our results have implications for intervention development in patients who report clusters of symptoms and caregivers, and for identifying at-risk individuals.


Assuntos
Fardo do Cuidador/psicologia , Cuidadores/psicologia , Demência/terapia , Recursos em Saúde , Aceitação pelo Paciente de Cuidados de Saúde , Qualidade de Vida/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Agressão/psicologia , Atenção à Saúde , Demência/psicologia , Europa (Continente) , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estados Unidos
4.
J Clin Neurosci ; 88: 83-87, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33992209

RESUMO

The objective of this study is to describe the caregiver burden, as well as the financial burden among caregivers after inpatient and outpatient neurosurgical patients. In this single center, observational study, adult patients undergoing elective inpatient or outpatient neurosurgery (supratentorial tumor resection or lumbar microdiscectomy) and his/her caregiver were recruited for the study. Bakas Caregiving Outcome Scale (BCOS) was used to assess caregiver burden and data was collected from preoperative period until post-operative day (POD) 30. Cost burden was assessed by a cost diary from day of surgery till POD 7. Forty-eight patient-caregiver pairs (21 inpatient craniotomies, 7 outpatient craniotomies, and 20 outpatient microdiscectomies) completed the study. BCOS values were in the negative impact range (<60) on POD1 in craniotomy group and improved to positive impact range (>60) after POD3. Median BCOS score remained at 60 in outpatient microdiscectomy. 56% of caregiver had at least 1 day of loss of income and 20% lost income throughout first 8 days. Median Cost (in Canadian dollars) associated with caregiving ranged from C$57 to C$250 amongst different groups. We concluded that caring for patients after craniotomy is psychologically demanding which leads to an increase in caregiver burden. In addition, there is a cost burden for the care givers in the form of missed workdays and additional direct expenses. Further studies are needed to recognize this problem and address the burden among the caregivers in the neurosurgical population.


Assuntos
Fardo do Cuidador/economia , Fardo do Cuidador/psicologia , Efeitos Psicossociais da Doença , Craniotomia , Discotomia , Adulto , Idoso , Canadá , Cuidadores , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neurocirurgia , Inquéritos e Questionários
5.
Sch Psychol ; 36(5): 358-366, 2021 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-33856853

RESUMO

The current COVID-19 pandemic is presenting challenges for families (Cluver et al., The Lancet, 2020), which may be exacerbated for caregivers of children with developmental disabilities (DDs; Center on the Developing Child, Stress, hope, and the role of science: Responding to the coronavirus pandemic, 2020). The purpose of this study was to explore caregiver burden and psychological distress among caregivers of children with DD as compared to caregivers of typically developing children across the United States as a result of COVID-19. Between 2 weeks and 1 month following COVID-19-related school closures, a total of 460 caregivers from across the U.S. completed an online survey via Qualtrics; recruitment and initial survey completion occurred simultaneously. Of the total sample of eligible participants (N = 407), 225 were the primary caregiver of a child with autism spectrum disorder (ASD)/attention-deficit/hyperactivity disorder (ADHD) and 182 were the primary caregiver of a child without ASD/ADHD. Participants across groups indicated varying levels of exposure to COVID-19 and an impact of COVID-19 at the community and individual or family levels. However, caregivers of children with ASD/ADHD reported significantly higher levels of burden, depression, anxiety, and stress. Overall, findings are consistent with anecdotal and preliminary reports that all caregivers are experiencing COVID-19-related challenges, with caregivers of children with ASD/ADHD experiencing even greater challenges, particularly with regard to burden and psychological distress. (PsycInfo Database Record (c) 2021 APA, all rights reserved).


Assuntos
Transtorno do Deficit de Atenção com Hiperatividade/enfermagem , Transtorno do Espectro Autista/enfermagem , COVID-19 , Fardo do Cuidador/psicologia , Cuidadores/psicologia , Deficiências do Desenvolvimento/enfermagem , Família/psicologia , Angústia Psicológica , Adolescente , Adulto , Idoso , Criança , Feminino , Inquéritos Epidemiológicos , Humanos , Masculino , Pessoa de Meia-Idade , Estados Unidos , Adulto Jovem
6.
J Child Neurol ; 36(9): 760-767, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-33829918

RESUMO

Because of the COVID-19 pandemic, in-person services for individuals with neurodevelopmental disabilities were disrupted globally, resulting in a transition to remote delivery of services and therapies. For individuals with neurogenetic conditions, reliance on nonclinical caregivers to facilitate all therapies and care was unprecedented. The study aimed to (1) describe caregivers' reported impact on their dependent's services, therapies, medical needs, and impact on themselves as a result of the COVID-19 pandemic and (2) assess the relationship between the extent of disruption of services and the degree of self-reported caregiver burden. Two online questionnaires were completed by caregivers participating in Simons Searchlight in April and May 2020. Surveys were completed by caregivers of children or dependent adults with neurodevelopmental genetic conditions in Simons Searchlight. Caregivers reported that the impact of the COVID-19 pandemic moderately or severely disrupted services, therapies, or medical supports. The majority of caregivers were responsible for providing some aspect of therapy. Caregivers reported "feeling stressed but able to deal with problems as they arise," and reported lower anxiety at follow-up. Caregivers reported that telehealth services were not meeting the needs of those with complex medical needs. Future surveys will assess if and how medical systems, educational programs, therapists, and caregivers adapt to the challenges arising during the COVID-19 pandemic.


Assuntos
COVID-19/psicologia , Fardo do Cuidador/psicologia , Cuidadores/psicologia , Pesquisas sobre Serviços de Saúde/métodos , Acesso aos Serviços de Saúde/estatística & dados numéricos , Transtornos do Neurodesenvolvimento/terapia , Adolescente , Adulto , Cuidadores/estatística & dados numéricos , Criança , Pré-Escolar , Feminino , Pesquisas sobre Serviços de Saúde/estatística & dados numéricos , Humanos , Masculino , Determinação de Necessidades de Cuidados de Saúde , Pandemias , SARS-CoV-2 , Inquéritos e Questionários
7.
Eur J Oncol Nurs ; 52: 101933, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33799022

RESUMO

PURPOSE: Cancer caregivers experience health challenges related to their caregiving role, and self-efficacy can contribute to health outcomes through behavioral, environmental, and personal factors. The purpose of this integrative review was to examine self-efficacy in caregivers of adults diagnosed with cancer, including its association with health factors. METHOD: A systematic search of PubMed, CINAHL, and PsychInfo yielded 560 articles. Following duplicate removal, 232 articles were screened for inclusion criteria with 71 articles remaining for final review. RESULTS: Studies were generally quantitative (n = 67), with predominantly female (n = 55), White (n = 36) caregivers, between the ages of 45-60 (n = 48). Self-efficacy was significantly associated with quality of life, caregiver function, social support, hope, depression, anxiety, and burden as a predictor, mediator, and outcome. Physical health and social determinants of health (social support and financial well-being) were addressed among fewer studies than mental and emotional health outcomes. CONCLUSIONS: Addressing self-efficacy in diverse populations and within physical, mental, and social health contexts will enhance understanding of how self-efficacy impacts caregivers of adults diagnosed with cancer. Nurses and other health care professionals can then effectively address supportive needs of caregivers in the personal, behavioral, and environmental domains.


Assuntos
Cuidadores/psicologia , Neoplasias/psicologia , Autoeficácia , Adulto , Fardo do Cuidador/psicologia , Humanos , Avaliação de Resultados em Cuidados de Saúde , Relações Profissional-Família
9.
Eur J Med Genet ; 64(7): 104230, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-33910094

RESUMO

In the last decade, the number of children and youth with special health care needs (CYSHCN) is increased as a result of the improvement of neonatal and pediatric assistance. The aim of our study was to describe the burden of care of the families caring a CYSHCN in our country, evaluating their living condition in order to explore socio-economic characteristics, health problems, needs and their adaptation processes trying to reach a balance between the needs of the disabled child and those of the other family members. We administered a questionnaire to the parents of CYSHCN during a routine clinical evaluation. From the analyses of questionnaires obtained, parents were the main caregiver of the children and 43,8% of them reported that they were not getting enough support. Burden of care fell on parents and indeed compilers reported an average level of stress of 3,2 (0-5) and more important, the main reported sources of stress were the concern about the future and health of their children. From the analyses of our population emerged unsatisfied needs of these families and their necessity to be effectively supported and integrated into the social fabric of the community. Social supporting is essential to help managing family stress and is evident the needed of these parents for interventions to directly target caregiver needs through the provision of tailored services, such as respite care opportunity, peer support, financial aid and medical home technologies to improve their quality of life.


Assuntos
Fardo do Cuidador/epidemiologia , Doenças Genéticas Inatas/psicologia , Doenças Raras/psicologia , Adulto , Fardo do Cuidador/psicologia , Criança , Feminino , Humanos , Itália , Masculino , Pessoa de Meia-Idade , Pais/psicologia , Apoio Social
10.
PLoS One ; 16(3): e0248739, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33765021

RESUMO

OBJECTIVES: Prader-Willi syndrome (PWS) is a rare genetic disorder characterized by maladaptive behaviors, amongst which hyperphagia is a life-long concern for individuals with PWS and their caregivers. The current study examined the contribution of hyperphagia and other factors to caregiver burden across lifespan, in 204 caregivers of individuals with PWS living in the US, using the Zarit Burden Interview (ZBI) and the hyperphagia questionnaire (HQ-CT). RESULTS: We found a strong relationship between ZBI and HQ-CT especially in individuals with PWS older than 4 y and showed that HQ-CT scores of individuals with PWS is positively correlated with ZBI scores of their caregivers. The weight status of individuals with PWS was not associated with HQ-CT and ZBI scores, except for obese individuals who had significantly higher HQ-CT scores when compared to normal weight PWS individuals. We looked at PWS symptoms and care-related issues that impacted individuals and caregivers the most. We found that care-related tasks had the biggest negative impact on caregivers of children aged 0-4 y, whereas anxiety, temper tantrums, and oppositional behaviors of older individuals with PWS had the biggest impact on their caregivers concomitant with their high caregiver burden. Finally, we assessed the variability of HQ-CT and ZBI over 6 months in a subgroup of 83 participants. Overall, neither measure differed between 6 months and baseline. Most individual's absolute HQ-CT score changes were between 0-2 units, whereas absolute ZBI score changes were between 0-6 points. Changes in the caregiver's or individual's life had little or no effect on HQ-CT and ZBI scores. CONCLUSIONS: This study demonstrates a relationship between hyperphagia and caregiver burden and sheds light on predominant symptoms in children and adolescents that likely underly PWS caregiver burden. The stability and relationship between HQ-CT and ZBI support ZBI as an additional outcome measure in PWS clinical trials.


Assuntos
Transtornos de Ansiedade/psicologia , Fardo do Cuidador/psicologia , Cuidadores/psicologia , Hiperfagia/psicologia , Síndrome de Prader-Willi/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Estados Unidos/epidemiologia , Adulto Jovem
11.
Neuropsychopharmacol Rep ; 41(2): 242-247, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33764671

RESUMO

AIMS: The purpose of this study was to retrospectively investigate care difficulties experienced by caregivers of people with schizophrenia during COVID-19 pandemic lockdowns in Japan (April 7-May 25, 2020) and examine associations between these care difficulties during lockdowns and daily caregiver burden. METHODS: Data were collected from 132 participants of the LINE Schizophrenia Family Association using an online survey. RESULTS: Caregivers were mostly concerned about who would care for people with schizophrenia if caregivers become infected with COVID-19. A significant association was found between higher daily caregiver burden and more difficult care experiences during COVID-19 pandemic lockdowns (B = 0.58, 95% confidence interval, 0.40-0.75, P < .01, adjusted R-squared = .34). CONCLUSIONS: Further studies and supports for caregivers of people with schizophrenia are needed.


Assuntos
COVID-19/prevenção & controle , Fardo do Cuidador/psicologia , Cuidadores/psicologia , Controle de Doenças Transmissíveis , Política Pública , Esquizofrenia/enfermagem , Estudos Transversais , Feminino , Humanos , Japão , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , SARS-CoV-2
12.
J Gerontol Soc Work ; 64(6): 656-675, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-33724169

RESUMO

COVID-19 has had an enormous impact on older people around the world. As family caregivers provide a good portion of the care for older people, their lives have been drastically altered by COVID-19 too. Our study is an in-depth exploration of the greatest concerns of family caregivers in the United States during COVID-19, as well as their perspectives on the benefits of caregiving during this global pandemic. We conducted in-depth interviews with a diverse sample of 52 family caregivers in the United States between May and September of 2020 over video conferencing using a semi-structured interview guide. Thematic analysis was conducted to ascertain our participants' perceptions. Caregiver's concerns were organized into six main themes, including social isolation, decline in mental health, decline in physical and cognitive functioning, keeping their family members safe from COVID-19, lack of caregiving support, and caregiving stress. The themes related to the benefits of caregiving during COVID-19 included: enjoyed the slower pace, increased time to spend together, deepened relationships, recognizing the resilience of family members, and caregiving innovations. Our in-depth study helps social workers understand the nature of caregiving stress during COVID-19, as well as the positive aspects of caregiving, even during a global pandemic.


Assuntos
COVID-19/epidemiologia , Cuidadores/psicologia , Família/psicologia , Idoso , Idoso de 80 Anos ou mais , Fardo do Cuidador/psicologia , Cognição , Efeitos Psicossociais da Doença , Feminino , Nível de Saúde , Humanos , Entrevistas como Assunto , Masculino , Saúde Mental , Pessoa de Meia-Idade , Pandemias , Pesquisa Qualitativa , SARS-CoV-2 , Segurança , Isolamento Social/psicologia , Estresse Psicológico , Estados Unidos/epidemiologia , Comunicação por Videoconferência
13.
PLoS One ; 16(3): e0247143, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33647035

RESUMO

There is increasing evidence that subjective caregiver burden is an important determinant of clinically significant anxiety in family carers. This meta-analysis aims to synthesise this evidence and investigate the relationship between subjective caregiver burden and anxiety symptoms in informal caregivers. We searched PubMed, CINAHL and PsycINFO up to January 2020. Combined estimates were obtained using a random-effects model. After screening of 4,312 articles, 74 studies (with 75 independent samples) were included. There was a large, positive association between subjective caregiver burden and anxiety symptoms (r = 0.51; 95% CI = 0.47, 0.54; I2 = 0.0%). No differences were found in subgroup analyses by type of study design (cross-sectional vs. longitudinal), sampling, control of confounders or care-recipient characteristics. Subjective caregiver burden is an important risk factor for anxiety in informal caregivers. Targeting subjective caregiver burden could be beneficial in preventing clinically significant anxiety for the increasing number of family carers worldwide.


Assuntos
Ansiedade/prevenção & controle , Fardo do Cuidador/psicologia , Cuidadores/psicologia , Adaptação Psicológica , Ansiedade/psicologia , Transtornos de Ansiedade/psicologia , Depressão/psicologia , Transtorno Depressivo/psicologia , Humanos , Qualidade de Vida/psicologia , Fatores de Risco
14.
JAMA Netw Open ; 4(2): e2036676, 2021 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-33570574

RESUMO

Importance: Caregiver strain has been shown to be associated with adverse effects on caregivers' health, particularly among those with cardiovascular disease. Less is known about the association of caregiver strain with health behaviors among caregivers with diabetes, a disease that requires a high degree of self-care. Objective: To examine the association between caregiver strain and diabetes self-care among caregivers with diabetes. Design, Setting, and Participants: This cohort study was conducted between July 13, 2018, and June 25, 2020, using data on 795 US caregivers aged 45 years or older with self-reported diabetes from the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study, which comprised 30 239 Black and White adults 45 years or older throughout the US enrolled from January 2003 to October 2007. Exposures: Caregiver strain, assessed by self-report in response to the question, "How much of a mental or emotional strain is it to provide this care?" Response options were no strain, some strain, or a lot of (high) strain. Main Outcomes and Measures: Diabetes self-care, which was assessed across 4 domains (Mediterranean diet adherence, physical activity, smoking status, and medication adherence), and a composite self-care score summing performance across these domains. The association between caregiver strain and diabetes self-care was examined with multivariable Poisson regression adjusting for demographic, clinical, physical and mental functioning, and caregiving covariates. Results: Among the 795 caregivers with diabetes included in the study, the mean (SD) age was 63.7 (8.6) years, 469 (59.0%) were women, and 452 (56.9%) were Black individuals. Overall, 146 caregivers (18.4%) reported high caregiver strain. In unadjusted models, high caregiver strain was associated with less physical activity (prevalence ratio [PR], 0.66; 95% CI, 0.45-0.97), low medication adherence (PR, 0.80; 95% CI, 0.68-0.94), and worse self-care (PR, 0.65; 95% CI, 0.44-0.98). In adjusted models, the association between some and high caregiving strain with low medication adherence remained significant (adjusted PR: some strain, 0.88 [95% CI, 0.78-0.99]; high strain, 0.83 [95% CI, 0.69-0.99]). Conclusions and Relevance: In this cohort study of US adult caregivers with diabetes, a high level of strain was associated with low medication adherence. Increased awareness of the prevalence of caregiver strain and potential ramifications on caregivers' self-care appears to be warranted among health care professionals and caregivers.


Assuntos
Fardo do Cuidador/epidemiologia , Cuidadores/estatística & dados numéricos , Diabetes Mellitus/terapia , Exercício Físico , Comportamentos Relacionados com a Saúde , Hipoglicemiantes/uso terapêutico , Adesão à Medicação/estatística & dados numéricos , Autocuidado/estatística & dados numéricos , Afro-Americanos , Idoso , Fardo do Cuidador/psicologia , Cuidadores/psicologia , Dieta Mediterrânea/estatística & dados numéricos , Grupo com Ancestrais do Continente Europeu , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Fumar/epidemiologia , Estados Unidos/epidemiologia
15.
J Am Geriatr Soc ; 69(5): 1221-1230, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33590479

RESUMO

BACKGROUND/OBJECTIVES: As home becomes the most common place of death in the United States, information about caregiver support and place of death is critical to improve patient and caregiver experiences at end of life. We seek to examine (1) the association between family care availability and place of death; and (2) caregiving intensity associated with place of death. DESIGN: 2017 National Health and Aging Trends Study and National Study of Caregiving; nationally representative cross-sectional study of deceased older adults and last-month-of-life (LML) caregivers. SETTING: United States; all places of deaths. PARTICIPANTS: Three-hundred and seventy-five decedents and 267 LML caregivers. MEASUREMENTS: Place of death (home, hospital, and nursing or hospice facility), family care availability (spouse/partner, household size, number of daughters and sons), caregiving intensity (hours of help provided at LML and a binary indicator for high care-related emotional difficulty). RESULTS: 38.9% of older adults died at home, followed by hospital (33.1%), and nursing or hospice facility (28.0%). In an adjusted multinomial logistic regression, decedents with larger household size (odds ratio [OR]: 0.441; 95% confidence interval [CI]: 0.269-0.724) and more daughters (OR: 0.743 [95% CI: 0.575-0.958]) had lower odds of dying in nursing or hospice facility relative to dying at home. For older adults who died at home, caregivers provided 209.8 h of help at LML. In contrast, when death occurred in nursing or hospice facility, caregivers provided 91.6 fewer hours of help, adjusted for decedent and caregiver characteristics. Dying in hospital was associated with higher odds of caregiver emotional difficulty relative to home deaths (OR: 4.093 [95% CI: 1.623-10.323]). CONCLUSIONS: Household size and number of daughters are important determinants of place of death. Despite dying at home being associated with more hours of direct caregiving; caregiver emotional strain was experienced as higher for hospital deaths. Better support services for end-of-life caregivers might improve patient and caregiver experiences for home and hospital deaths.


Assuntos
Cuidadores/estatística & dados numéricos , Serviços de Assistência Domiciliar/estatística & dados numéricos , Hospitais para Doentes Terminais/estatística & dados numéricos , Hospitais/estatística & dados numéricos , Assistência Terminal/estatística & dados numéricos , Crianças Adultas/psicologia , Crianças Adultas/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Fardo do Cuidador/epidemiologia , Fardo do Cuidador/psicologia , Cuidadores/psicologia , Estudos Transversais , Características da Família , Feminino , Humanos , Masculino , Razão de Chances , Assistência Terminal/psicologia , Estados Unidos/epidemiologia
16.
Res Dev Disabil ; 112: 103890, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-33607484

RESUMO

BACKGROUND: Caring for children with cerebral palsy (CP) for many aspects of their lives may affect caregiver's psychological health. Emergence of COVID-19 put added pressure on caregivers. AIMS: The aim of this study was to investigate the psychological health of Iranian caregivers of children with CP and associated risks during a lockdown period. METHODS: Using online snowball sampling, 160 caregivers of children with CP participated in this web-based cross-sectional study. The Hospital Anxiety and Depression Scale (HADS), Perceived Stress Scale (PSS-4), Caregiver Difficulties Scale (CDS), and a demographic questionnaire were administered. Hierarchical multiple linear regression analysis was applied to identify risk factors related to caregiver psychological health. OUTCOMES AND RESULTS: Mental health problems were prevalent; (depression = 45.0% and anxiety = 40.6%). Significant correlations were found between CDS and HADS-Anxiety (r = 0.472, P < 0.001), HADS-depression (r = 0.513, P < 0.001), and perceived stress (PSS) related to COVID-19 (r = 0.425, P < 0.001). After controlling for demographic and clinical variables, burden (CDS) was found to significantly predict caregiver anxiety, depression and stress. Furthermore, several demographic characteristics (being married, low educational level and low income) were significantly related to high HADS Anxiety scores. For depression, only having a physical problem was significantly related to HADS among demographic variables. No significant correlations were found between PSS-4 and demographic variables. CONCLUSIONS AND IMPLICATIONS: During COVID-19 outbreak, the mental health of caregivers of children with CP is affected by multiple factors such as burden of care and demographic characteristics. Due to the importance of well-being among caregivers of disabled children, a comprehensive plan including psychological consultation, remote education, or in-person handouts for the self-care or handling of the children and adequate distance support may enable better mental health for these caregivers.


Assuntos
Ansiedade/epidemiologia , COVID-19 , Fardo do Cuidador/epidemiologia , Paralisia Cerebral , Depressão/epidemiologia , Pais/psicologia , Estresse Psicológico/epidemiologia , Adolescente , Adulto , Ansiedade/psicologia , Fardo do Cuidador/psicologia , Criança , Pré-Escolar , Estudos Transversais , Depressão/psicologia , Escolaridade , Feminino , Nível de Saúde , Humanos , Renda , Internet , Irã (Geográfico)/epidemiologia , Masculino , Estado Civil , Saúde Mental , Prevalência , Fatores de Risco , SARS-CoV-2 , Estresse Psicológico/psicologia , Inquéritos e Questionários
17.
Eur J Oncol Nurs ; 50: 101882, 2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-33421929

RESUMO

PURPOSE: The purpose of this cross-sectional study was to determine the caregiving burden, depression and anxiety of family caregivers of Turkish patients with cancer and the affecting factors. METHODS: This cross-sectional study was conducted between January-May 2018 with one hundred and fifty-eight caregivers and one hundred and fifty-eight patients with cancer who were treated at a university hospital in Edirne, Turkey. Data were collected with a questionnaire form, Zarit Burden Interview (ZBI) Scale and the Hospital Anxiety Depression Scale (HADS). RESULTS: This study found that 51.3% of the patients with cancer were male, 70.3% of the caregivers were female and more than half of them (57.0%) were the spouses of the patients. The mean ZBI score of the caregivers was 24.62 ± 14.19. There was a positive relationship between the ZBI scores and HADS scores of family caregivers (p < 0.05). As the caregiving burden of caregivers increased, their anxiety and depression levels were increased too. It was found that as the caregiving duration of family caregivers increased, the caregiving burden increased, and caregivers' anxiety depression scores got worse (p < 0.05). In the multivariate analysis, the duration of caregiving per day/hours, ECOG score and the age of the caregiver independently affected the caregiving burden (p < 0.05). As the functional status of the patient with cancer got worse, caregiving burden increased. Caregiving burden was found to be higher in those who were younger, female and giving care for longer times per day (p < 0.05). CONCLUSION: This study found that as the caregiving burden and caregivers' daily patient care duration increased, the level of anxiety and depression increased too. Caregivers of patients with cancer should take appropriate psychological intervention to decrease their distress. In addition, we thought that healthcare professionals must consider the factors affecting the caregiving burden which affect the patient care directly.


Assuntos
Ansiedade/psicologia , Fardo do Cuidador/psicologia , Cuidadores/psicologia , Depressão/psicologia , Neoplasias/psicologia , Adulto , Idoso , Estudos Transversais , Família , Saúde da Família , Feminino , Humanos , Modelos Lineares , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Fatores de Tempo , Turquia
18.
Qual Life Res ; 30(5): 1347-1354, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-33447957

RESUMO

PURPOSE: The study aimed to determine the caregiver burden and coping strategies in caregivers of familial Mediterranean fever (FMF) patients in relation to illness severity, therapy and health-related quality of life (HRQoL). METHODS: The study included 171 paediatric FMF patients and their caregivers (parents). The caregivers were asked to complete a socio-demographic form, the Zarit caregiver burden interview (ZCBI) and the Brief COPE. The patients and their caregivers were asked to complete the KINDer Lebensqualitätsfragebogen questionnaire (self-report and proxy report, respectively) for assessing HRQoL. The patients were categorised according to their disease activity (mild, moderate or severe) and the presence or absence of anti-IL-1 therapy. RESULTS: The mean ZCBI score of the caregivers was 44.7 ± 13.5. ZCBI and COPE scores did not differ significantly between the caregivers of FMF patients receiving and not receiving anti-IL-1 therapy. However, dysfunctional COPE (p = 0.039) and ZCBI (p = 0.021) scores showed a significant difference between the caregivers in relation to patient's disease severity. ZCBI scores were positively correlated with dysfunctional coping (p = 0.01). Self-reported HRQoL disease module scores were lower for the patients who received anti-IL-1 therapy than for those did not (p = 0.009). Proxy-reported (p < 0.001) and self-reported (p = 0.043) HRQoL disease module scores were lower for the patients with severe disease activity. CONCLUSIONS: As the caregiver burden increases, parents tend to use a dysfunctional coping strategy. Good control of disease activity with administration of medical therapy can reduce the disease severity, thereby decrease the caregiver burden, and secondly help to reduce the usage of dysfunctional coping in caregivers.


Assuntos
Fardo do Cuidador/psicologia , Febre Familiar do Mediterrâneo/terapia , Qualidade de Vida/psicologia , Índice de Gravidade de Doença , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Inquéritos e Questionários
19.
Nihon Koshu Eisei Zasshi ; 68(2): 131-143, 2021 Feb 26.
Artigo em Japonês | MEDLINE | ID: mdl-33390506

RESUMO

Objectives The purpose of this study was to understand the experience of grown-up children with parents suffering from mental illness during their elementary, junior high, and high school years, and the consultation situations at their schools.Methods A web-based questionnaire survey was conducted on 240 grown-up children who had participated in groups for children with parents suffering from mental illness. The analysis was a simple tabulation and compared the consultation history inside and outside the school environment, according to the respondent's age. Free-response descriptions were categorized according to the content.Results A total of 120 respondents answered, ranging in age from 20 to over 50 years, with the majority being women (85.8%). Their mothers were the most likely parent to suffer from a mental illness (67.5%), and their estimated age at illness onset was before entering elementary school (73.1%). During their elementary, junior high, and high school years, 57.8-61.5% of the respondents provided emotional care, and 29.7-32.1% did household chores. When they were in elementary school, most recognized adult fights (62.4%) and experienced attacks by parents (51.4%). Signs that others could have noticed included the fact that parents did not visit the school or talk to teachers, being bullied, forgetfulness, absenteeism, arriving late for school, and academic deterioration. Nearly half of the respondents (43.2-55.0%) hid their challenges during their elementary, junior high, and high school years. They were aware of teachers' prejudice towards mental illness, discriminatory behavior, and lack of consideration for privacy. At the same time, many respondents wanted teachers to be concerned about their circumstances and listen to their stories. More than half of the respondents (62.7-80.7%) did not approach school staff, who did not notice their problems. When they were high school students, they had an inadequate consultation environment or were unprepared to consult. The easiest person to approach was the teacher in charge.Conclusion Children with parents suffering from a mental illness were those most in need of support, while being the least connected to sources of support. Schools need to support children to become aware of their problems at home, and teachers need to pay more attention to their students, and listen to them carefully, including to what they may not say.


Assuntos
Fardo do Cuidador/psicologia , Transtornos Mentais/psicologia , Relações Pais-Filho , Pais/psicologia , Encaminhamento e Consulta , Professores Escolares , Instituições Acadêmicas , Estudantes/psicologia , Absenteísmo , Adulto , Grupo com Ancestrais do Continente Asiático , Feminino , Humanos , Japão , Masculino , Pessoa de Meia-Idade , Encaminhamento e Consulta/ética , Apoio Social , Inquéritos e Questionários , Adulto Jovem
20.
Nihon Koshu Eisei Zasshi ; 68(3): 157-166, 2021 Mar 30.
Artigo em Japonês | MEDLINE | ID: mdl-33390508

RESUMO

Objectives Research suggests that Japan has a substantial number of young carers, that is, children who provide care to their family members. However, little is known about the effects of their caring roles on their life satisfaction and health status. Therefore, the objective of the present study was to investigate the relationship between caring roles, life satisfaction, and subjective health status among high school students, as well as to discuss the effects of caring roles on young carers' life satisfaction and subjective health status.Methods We conducted a questionnaire survey on 6,160 high school students from 10 prefectural schools in Osaka prefecture, Japan. The questionnaire included questions relating to family members and students' caring roles, with one question regarding life satisfaction, one question regarding self-rated health status, and seven questions regarding subjective health symptoms. Principal component analysis was applied to responses to the seven questions regarding subjective health symptoms. Then, the relationship between caring roles, life satisfaction, and subjective health status was analyzed, with adjustment for potential confounding factors.Results A total of 5,246 valid questionnaires were collected; however, our analysis was limited to 4,509 valid questionnaires that included all the required information. It was found that 47 (1.0%) students provided care for infant siblings without disability, illness, or other special needs (Young Carers A), and 233 (5.2%) provided care for family members with disabilities, illnesses, or other special needs (Young Carers B). The remaining 4,229 (93.8%) students (those who did not provide care to their family members) formed the control group. Logistic regression analysis indicated a significant relationship between caring roles and life satisfaction (P<0.001). The odds ratios for dissatisfaction among Young Carers A and B were 2.742 and 1.546, respectively, which were statistically significant (P<0.001 and P=0.003, respectively). Although no significant relationship was found between self-rated health status and caring roles (P=0.109), the principal component score for subjective health symptoms in multiple regression analysis revealed a significant relationship with caring roles (P<0.001). Compared with the control group, the partial regression coefficients among Young Carers A and B were 0.362 and 0.330, respectively, which were also statistically significant (P=0.012 and P<0.001, respectively).Conclusion Our results suggest that excessive caring burden may have adverse effects on young carers' life satisfaction and subjective health status.


Assuntos
Fardo do Cuidador/psicologia , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Família , Nível de Saúde , Satisfação Pessoal , Psicologia do Adolescente , Instituições Acadêmicas , Estudantes/psicologia , Estudantes/estatística & dados numéricos , Adolescente , Fatores Etários , Feminino , Humanos , Japão , Masculino , Inquéritos e Questionários
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