RESUMEN
Introduction: Informal caregiving is a critical component of the healthcare system despite numerous impacts on informal caregivers' health and well-being. Racial and gender disparities in caregiving duties and health outcomes are well documented. Place-based factors, such as neighborhood conditions and rural-urban status, are increasingly being recognized as promoting and moderating health disparities. However, the potential for place-based factors to interact with racial and gender disparities as they relate to caregiving attributes jointly and differentially is not well established. Therefore, the primary objective of this study was to jointly assess the variability in caregiver health and aspects of the caregiving experience by race/ethnicity, sex, and rural-urban status. Methods: The study is a secondary analysis of data from the 2021 and 2022 Behavioral Risk Factor Surveillance System (BRFSS) from the Centers for Disease Control and Prevention. Multivariable logistic regression or Poisson regression models assessed differences in caregiver attributes and health measures by demographic group categorized by race/ethnicity, sex, and rural-urban status. Results: Respondents from rural counties were significantly more likely to report poor or fair health (23.2% vs. 18.5%), have obesity (41.5% vs. 37.1%), and have a higher average number of comorbidities than urban caregivers. Overall, rural Black male caregivers were 43% more likely to report poor or fair health than White male caregivers (OR 1.43, 95% CI 1.21, 1.69). Urban female caregivers across all racial groups had a significantly higher likelihood of providing care to someone with Alzheimer's disease than rural White males (p < 0.001). Additionally, there were nuanced patterns of caregiving attributes across race/ethnicity*sex*rural-urban status subgroups, particularly concerning caregiving intensity and length of caregiving. Discussion: Study findings emphasize the need to develop and implement tailored approaches to mitigate caregiver burden and address the nuanced needs of a diverse population of caregivers.
Asunto(s)
Sistema de Vigilancia de Factor de Riesgo Conductual , Cuidadores , Población Rural , Humanos , Cuidadores/estadística & datos numéricos , Cuidadores/psicología , Masculino , Femenino , Estados Unidos , Persona de Mediana Edad , Adulto , Población Rural/estadística & datos numéricos , Anciano , Disparidades en el Estado de Salud , Población Urbana/estadística & datos numéricos , Características de la Residencia/estadística & datos numéricos , Etnicidad/estadística & datos numéricos , Factores SexualesRESUMEN
Introduction: Neurofibromatosis type 1 (NF1) is a rare genetic disorder, with lack of evidence of disease burden in China. We aimed to describe the economic burden, health-related quality of life (HRQL), and caregiver burden of NF1 patients in China. Methods: We conducted an online cross-sectional survey employing the China Cloud Platform for Rare Diseases, with 223 caregivers of NF1 pediatric patients (patients under 18), and 226 adult patients. Economic burden was estimated using direct and indirect costs related to NF1 in 2021, and the Work Productivity and Activity Impairment Questionnaire: General Health V2.0 (WPAI-GH). HRQL measures included EQ-5D-Y proxy version and PedsQL™ 4.0 Generic Core Scales (PedsQL GCS) proxy version for pediatric patients, and EQ-5D-5L and PedsQL™ 3.0 Neurofibromatosis Module (PedsQL NFM) for adult patients. Caregiver burden was estimated by Zarit Burden Interview (ZBI). Results: For pediatric patients, the average direct cost in 2021 was CNY 33,614 (USD 4,879), and employed caregivers' annual productivity loss was 81 days. EQ-5D-Y utility was 0.880 ± 0.13 and VAS score was 75.38 ± 20.67, with 52.6% patients reporting having problems in "pain/discomfort" and 42.9% in "anxiety/depression." PedsQL GCS total score was 68.47 ± 19.42. ZBI score demonstrated that 39.5% of caregivers had moderate-to-severe or severe burden. For adult patients, average direct cost in 2021 was CNY 24,531 (USD 3,560). Patients in employment reported an absenteeism of 8.5% and presenteeism of 21.6% according to the results of WPAI-GH. EQ-5D-5L utility was 0.843 ± 0.17 and VAS score was 72.32 ± 23.49, with more than half of patients reporting having problems in "pain/discomfort" and "anxiety/depression" dimensions. PedsQL NFM total score was 68.40 ± 15.57. Conclusion: Both pediatric and adult NF1 patients in China had a wide-ranging economic burden and low HRQL, especially in the psychological dimension. Caregivers for NF1 pediatric patients experienced considerable caregiver burden. More attention and support from policymakers and stakeholders are required to relieve NF1 patients' and caregivers' distress.
Asunto(s)
Carga del Cuidador , Costo de Enfermedad , Neurofibromatosis 1 , Calidad de Vida , Humanos , Calidad de Vida/psicología , China , Neurofibromatosis 1/psicología , Masculino , Femenino , Estudios Transversales , Adulto , Niño , Adolescente , Carga del Cuidador/psicología , Encuestas y Cuestionarios , Persona de Mediana Edad , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Cuidadores/economía , Adulto Joven , PreescolarRESUMEN
BACKGROUND: Children with profound intellectual disabilities are unable to do anything for themselves and require full-time care in healthcare facilities. While caring for children, secondary caregivers become overwhelmed. Coupled with little or no support, the overwhelming work affects their psychological, social and financial well-being. Mental healthcare practitioners have perspectives on conditions under which secondary caregivers work and how can they be supported. Little is known about such perspectives. OBJECTIVES: This study aims to explore and describe the perspectives of mental healthcare practitioners regarding the conditions under which secondary caregivers of children with profound intellectual disabilities work and how can they be supported. METHOD: A qualitative-exploratory-descriptive and contextual research design was adopted using a non-probability purposive sampling technique. This study was conducted in Gauteng province. Semi-structured individual interviews were performed to collect data. Content data analysis and ATLAS.ti were used to analyse the data. RESULTS: Knowledge and skills development, stress reduction, resources and motivation were themes that emerged. CONCLUSION: This study explored and described the perspectives of mental healthcare practitioners regarding the conditions under which secondary caregivers of children with profound intellectual disabilities work and how can they be supported. If implemented, perspectives can improve the holistic well-being of secondary caregivers.Contribution: This study broadened an understanding of how secondary caregivers can be supported. Future researchers can use study results to develop programmes, intervention strategies and frameworks to support secondary caregivers.
Asunto(s)
Cuidadores , Discapacidad Intelectual , Investigación Cualitativa , Humanos , Discapacidad Intelectual/psicología , Discapacidad Intelectual/enfermería , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Femenino , Masculino , Adulto , Niño , Entrevistas como Asunto/métodos , Persona de Mediana Edad , Apoyo Social , Sudáfrica , Personal de Salud/psicología , Personal de Salud/estadística & datos numéricosRESUMEN
Native Americans (Indigenous Americans) have high rates of serious illness in the United States. Informal caregivers are heavily relied on in caring for patients in low-resource settings. The needs of caregivers residing on reservations are sorely underreported. Therefore, our objective was to examine relationships between facilitators (communal mastery, cultural identity, and spirituality) and barriers (depression, anxiety, stress, and burden) with supportive care needs among adult informal caregivers in 1 reservation-based community. A cross-sectional survey was distributed in July and August 2022 as part of a larger multimethod, community-based participatory research study. We used descriptive statistics and linear regression models to examine relationships against the primary outcome, the Supportive Care Needs Assessment Tool for Indigenous People. Overall, 127 participants were included; most were female (n = 92, 72.4%), were between 30 and 49 years (n = 57, 44.9%), and had 6 months or less of caregiving experience (n = 41, 32.5%). Higher depression, anxiety, stress, and burden were significantly associated with higher Supportive Care Needs Assessment Tool for Indigenous People scores. Overall, mental health is a significant barrier that may indicate greater supportive care needs among informal caregivers, although further work is needed to differentiate symptoms and their impact on caregiving from a cultural perspective.
Asunto(s)
Cuidadores , Humanos , Estudios Transversales , Femenino , Masculino , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Persona de Mediana Edad , Adulto , Encuestas y Cuestionarios , Anciano , Apoyo Social , Evaluación de Necesidades , Investigación Participativa Basada en la ComunidadRESUMEN
BACKGROUND: Poor child feces management contributes to enteropathogen exposure and, consequently, is associated with diarrheal disease and negative impacts on child growth. Despite high latrine coverage, only 37% of Indian households safely dispose of their child's feces into a latrine or have the child use the latrine, with the lowest rate in the state of Odisha at 12%. We evaluated a behavior change and hardware intervention designed to improve caregiver safe disposal of child feces and child latrine use. METHODS: We conducted a cluster-randomized controlled trial among 74 villages in rural Odisha, India. Eligible villages previously participated in a water and sanitation infrastructure program. Following a baseline survey, half the villages were assigned to intervention and half to control. Caregivers of children < 5 years old from households with a latrine were eligible to participate. The intervention included five behavior change activities. Hardware was provided at the first activity, based on child age, to aid safe disposal and latrine training (wash basin and bucket with lid for children < 7 months old; latrine training mat platform with removable tray for children 7 to 48 months old). The primary outcome was caregiver reported 'safe disposal' as defined by the WHO/UNICEF Joint Monitoring Programme (JMP) which encompasses two behaviors: caregiver disposal of child's feces into a latrine and child latrine use. Safe disposal was measured four to six months after intervention delivery (endline). RESULTS: Endline analysis included 665 intervention caregivers (840 children) and 634 control caregivers (785 children). Prevalence of JMP-defined safe disposal was 1.16 times greater in the intervention arm compared to control (77.7% vs. 65.9%; prevalence ratio [PR] 1.16, 95% CI 1.04-1.29), with higher prevalence of caregiver safe disposal (18.6% vs. 13.6%; PR 1.46, 95% CI 1.12-1.92) but no significant difference in child latrine use (59.0% vs. 52.2%; PR 1.06, 95% CI 0.95-1.18). When restricted to children < 3 years old, JMP-defined safe disposal was 1.42 times greater (67.5% vs. 46.7%; PR 1.42 95% CI 1.21-1.67) with higher prevalence of both caregiver safe disposal (34.6% vs. 25.7%; PR 1.44, 95% CI 1.11-1.86) and child latrine use (32.9% vs. 20.9%; PR 1.41, 95% CI 1.08-1.83). CONCLUSIONS: The intervention increased JMP-defined safe disposal, with substantial improvements in both caregiver safe disposal and child latrine use among children < 3 years old. While future research is needed to demonstrate sustainability of these effects, our results suggest a potentially scalable intervention for improving child feces disposal and reducing disease. TRIAL REGISTRATION: This trial was retrospectively registered at ISRCTN15831099 on 18/02/2020, which was approximately two months after the first participant was recruited for the baseline survey on 02/12/2019.
Asunto(s)
Heces , Población Rural , Cuartos de Baño , Humanos , India , Preescolar , Lactante , Cuartos de Baño/estadística & datos numéricos , Femenino , Masculino , Población Rural/estadística & datos numéricos , Cuidadores/educación , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Análisis por Conglomerados , Saneamiento/normas , AdultoRESUMEN
BACKGROUND: Caring for a child with autism spectrum disorder (ASD) is a challenging and stressful task, especially in countries with limited resources. Additional research is necessary, considering the increasing prevalence of children with ASD, to gain increased knowledge of the complex difficulties faced by caregivers of ASD children and to offer insights into the coping strategies and support networks that parents utilise. OBJECTIVES: The objective of this study was to explore and describe the experiences and coping mechanisms of caregivers of children with ASD in Dr Kenneth Kaunda district, North West province, South Africa. METHOD: Qualitative explorative, contextual and descriptive design with purposive sampling technique and semi-structured interviews were conducted. Data were analysed following the six steps of reflexive thematic analysis. RESULTS: Two themes were identified: Caregivers' experiences in raising a child with autism, and caregivers' coping in raising a child with autism. CONCLUSION: The research established caregivers' experiences and coping mechanisms in raising a child with ASD and the effects on different aspects of their lives including emotional, social and financial aspects, which contribute negatively to their holistic well-being. These impediments warrant the establishment of emotional support groups, empowerment of caregivers and awareness-raising through campaigns to educate the family and the community on the diverse challenges.Contribution: The findings of this study contribute to a deeper understanding of the multifaceted challenges faced by caregivers of children with ASD and provide insights into the support systems and coping mechanisms employed by these caregivers within the socio-ecological context.
Asunto(s)
Adaptación Psicológica , Trastorno del Espectro Autista , Cuidadores , Investigación Cualitativa , Humanos , Trastorno del Espectro Autista/psicología , Trastorno del Espectro Autista/enfermería , Trastorno del Espectro Autista/complicaciones , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Sudáfrica , Femenino , Masculino , Adulto , Niño , Persona de Mediana Edad , Entrevistas como Asunto/métodos , PreescolarRESUMEN
OBJECTIVES: To examine the association between caregiver-perceived cultural sensitivity of health care providers and child health status in the United States. METHODS: We analyzed National Survey of Children's Health data (n = 145,226) from 2016-2020. Using logistic regression, we determined odds of reporting a better health status by level of caregiver-perceived provider cultural sensitivity while controlling for potential confounders. RESULTS: Children with providers perceived as more culturally sensitive by their caregivers had 2.38 times the odds (95% confidence interval: 1.73, 3.28) of enjoying a better caregiver-assessed health status compared with children whose providers were perceived as less culturally sensitive. Caregivers of BIPOC children in our sample were 1.99 times more likely (95% CI: 1.89, 2.10) to report their provider as only sometimes or never culturally sensitive. CONCLUSIONS: Cultural sensitivity of health care providers, as perceived by caregivers, was associated with caregiver-assessed child health status in our study. This association remained significant when controlling for various sociodemographic variables. Our findings highlight the need for more research around the potential positive impact that improving provider cultural sensitivity could have on the health of children who are Black, Indigenous, or other People of Color (BIPOC).
Asunto(s)
Cuidadores , Salud Infantil , Competencia Cultural , Personal de Salud , Estado de Salud , Humanos , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Femenino , Masculino , Estados Unidos , Niño , Preescolar , Personal de Salud/psicología , Personal de Salud/estadística & datos numéricos , Encuestas Epidemiológicas , Adolescente , Lactante , AdultoRESUMEN
BACKGROUND: Lead, a potent neurotoxin, causes irreversible damage to the nervous system, and low- and middle-income countries face huge health and economic productivity losses due to childhood lead exposure. In Bangladesh, informal Used Lead Acid Battery (ULAB) recycling sites are an important source of lead pollution. Little is known about lead awareness among communities exposed to ULAB recycling. Therefore, this study aims to assess knowledge, attitudes, and practices related to lead pollution among caregivers of young children and adolescents living adjacent to informal ULAB sites. METHODS: A cross-sectional study was conducted among 732 mothers of young children and adolescents in 4 districts of Bangladesh (survey and observation). Simple and multiple linear regression was conducted to describe patterns and predictors of lead-related knowledge and practices. RESULTS: 60% of respondents had heard the name 'lead' ("shisha"). The mean knowledge score was low (19 out of 44). Residents of high-risk districts, male respondents, and those with more than 5 years of schooling were significantly more likely to have higher knowledge scores than others. In terms of attitude, 52% of respondents perceived lead to be risky for human health but 43% thought lead pollution was controllable. Observation of households for lead exposure revealed that 63% of children and adolescents play or pass by ULAB sites, 29% ate non-food items, 41% of households had visible paint chips on the walls, 59% households used polished turmeric and 15% used lead-soldered cans to store foods. Among protective practices, 70% reported cleaning floors, 84% consumed iron-rich foods, and 48% consumed calcium-rich foods. CONCLUSIONS: The population had a high potential for lead exposure. Their knowledge about lead was limited, and risk perception was moderate. To reduce lead exposure and increase knowledge and awareness among the at-risk population, it is crucial to take measures such as mass awareness campaigns through media and schools. It is important to strengthen the implementation of existing policies, such as policies on leaded gasoline, paints, and lead-acid batteries, that can address the sources of lead exposure for the community.
Asunto(s)
Conocimientos, Actitudes y Práctica en Salud , Plomo , Reciclaje , Humanos , Bangladesh , Estudios Transversales , Femenino , Adolescente , Masculino , Plomo/análisis , Adulto , Cuidadores/estadística & datos numéricos , Cuidadores/psicología , Niño , Exposición a Riesgos Ambientales/efectos adversos , Intoxicación por Plomo/epidemiología , Adulto Joven , Persona de Mediana EdadRESUMEN
BACKGROUND: Little is known about rates of COVID-19 vaccine uptake among youth with bipolar spectrum disorders (BSD). As such, the aim of this study is to assess rates and predictors of COVID-19 vaccine uptake among youth with BSD and their caregivers in the United States. METHODS: Youth and their main caregiver were recruited from a large pragmatic study cohort. Youth who were aged 8-22 at the time of this data collection, had a bipolar-spectrum disorder diagnosis, had overweight or obesity, and were treated with a second-generation antipsychotic were invited to participate in an online survey and interview assessing the impact of the COVID-19 pandemic. RESULTS: A total of 453 surveys and 341 interviews were completed 07/2021-05/2022 by youth and their caregivers. Sixty-seven percent of caregivers and 63 % of youth reported receiving the COVID-19 vaccine. Vaccine uptake rates among youth and caregivers were highly correlated. Predictors of vaccine uptake among youth were older age and living in the Northeast Region of the United States. Predictors of caregiver vaccine uptake were male sex, higher annual household income and not having to quarantine due to COVID-19. LIMITATIONS: The sample was small and not a full representation of a population with bipolar-spectrum disorders therefore, the results may not be generalizable. The study design and statistical method do not allow for causal inferences to be made. CONCLUSIONS: These findings may aid in targeting interventions to maximize COVID-19 and other vaccine uptake in youth with bipolar disorders and their families.
Asunto(s)
Trastorno Bipolar , Vacunas contra la COVID-19 , COVID-19 , Cuidadores , Humanos , Masculino , Femenino , Adolescente , Cuidadores/estadística & datos numéricos , COVID-19/prevención & control , Niño , Estados Unidos , Adulto Joven , SARS-CoV-2 , Adulto , Vacunación/estadística & datos numéricos , Encuestas y CuestionariosRESUMEN
BACKGROUND: Psychosocial assessment is a core component of the multidisciplinary evaluation for left ventricular assist device (LVAD) implantation. The degree to which psychosocial conditions are considered a contraindication to LVAD implantation continues to be debated. This systematic review examines modifiable psychosocial factors as predictors of outcomes in patients undergoing LVAD implantation. METHODS: We conducted a systematic review following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guideline. The search resulted in 2509 articles. After deduplication, abstract and full-text review, 20 relevant articles were identified. RESULTS: Included studies evaluated socioeconomic status (n = 6), caregiver characteristics (n = 6), non-adherence (n = 6), substance use (n = 13), and psychiatric disorder (n = 8). The most commonly measured outcomes were all-cause death, readmission rate, and adverse events. Studies varied widely in definition of each psychosocial factor and selected outcomes. No psychosocial factor was consistently associated with a specific outcome in all studies. Socioeconomic status was generally not associated with outcomes. Non-adherence, psychiatric disorder, and substance use were associated with higher risks of mortality, adverse events, and/or readmission. Findings on caregiver characteristics were mixed. CONCLUSION: Of the psychosocial factors studied, non-adherence, psychiatric disorder, and substance use were the most consistently associated with an increased risk of mortality, readmission, and/or adverse events. Heterogeneity in research methodology and study quality across studies precludes firm conclusions regarding the impact of psychosocial factors on long-term patient outcomes. The results of this review reveal a need for adequately powered studies that use uniform definitions of psychosocial factors to clarify relationships between these factors and outcomes after LVAD implantation.
Asunto(s)
Corazón Auxiliar , Trastornos Mentales , Humanos , Corazón Auxiliar/estadística & datos numéricos , Trastornos Mentales/epidemiología , Cuidadores/estadística & datos numéricos , Cuidadores/psicología , Insuficiencia Cardíaca/terapia , Trastornos Relacionados con Sustancias , Evaluación de Resultado en la Atención de SaludRESUMEN
OBJECTIVE: To explore caregivers' perspectives on complementary feeding in rural and urban areas of Central Java, Indonesia. DESIGN: A qualitative comparative study using in-depth interviews. We applied thematic analysis to identify themes and subthemes and presented representative quotes. SETTING: Rural and urban villages in Central Java Province, Indonesia. PARTICIPANTS: 46 mothers and grandmothers of 6- to 23-month-old children. FINDINGS: We identified five themes: 1) timing of food introduction, 2) types of complementary foods, 3) meal preparations, 4) complementary food benefits, and 5) expectations toward complementary foods. While caregivers in urban areas had more favourable perceptions of complementary feeding, some misperceptions existed regarding complementary feeding in both areas. These misconceptions included the age of complementary food introduction, the delay in introducing animal-source foods, and the emphasis on any food the child preferred as long as they ate rather than on healthy food choices. KEY CONCLUSIONS: There were similarities and differences in complementary feeding perspectives between caregivers in rural and urban areas. Therefore, policymakers and public health workers should design interventions to enhance complementary feeding practices by addressing the contextual issues in specific settings.
Asunto(s)
Cuidadores , Fenómenos Fisiológicos Nutricionales del Lactante , Investigación Cualitativa , Población Rural , Población Urbana , Humanos , Indonesia , Población Rural/estadística & datos numéricos , Femenino , Población Urbana/estadística & datos numéricos , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Lactante , Adulto , Masculino , Percepción , Persona de Mediana Edad , Conducta Alimentaria/psicología , Conocimientos, Actitudes y Práctica en Salud , Entrevistas como Asunto/métodosRESUMEN
BACKGROUND: Research suggests a bidirectional relationship between food insecurity and stress, but few studies have examined associations of food insecurity with stress and other indicators of cardiometabolic health, including depression, diet quality, and body weight, among lower-income women in the U.S. METHODS: This cross-sectional study analyzed data from lower-income women caregivers living in North Carolina (n = 100): 42% Black/African American, 25% Hispanic/Latina, and 33% White women. Multivariable linear regression models were used to determine associations of food insecurity status with perceived stress, depressive symptoms, diet quality, and body mass index (BMI). Multivariable logistic regression models were used to determine associations of food insecurity with clinical depression and BMI ≥ 30 kg/m2. Associations were examined with and without adjustment for perceived stress. RESULTS: Forty-two percent of the sample were experiencing food insecurity. Compared to food secure caregivers, food-insecure caregivers had significantly higher perceived stress (ß: +7.51; 95%CI: 4.19, 10.84) and depressive symptoms (ß: +3.55; 95%CI: 0.54, 6.56) and lower diet quality (ß: -9.10; 95%CI: -15.81, -2.40). Associations with BMI outcomes were not statistically significant. CONCLUSION: Findings support removing stigma in nutrition assistance programs and clinical interactions, motivate future longitudinal studies, and inform the development of destigmatizing interventions for health promotion or disease prevention.
Asunto(s)
Cuidadores , Depresión , Dieta , Inseguridad Alimentaria , Estrés Psicológico , Humanos , Femenino , North Carolina/epidemiología , Depresión/epidemiología , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Estudios Transversales , Persona de Mediana Edad , Adulto , Pobreza , Índice de Masa CorporalRESUMEN
Caregivers provide support to persons who might otherwise require placement in long-term care facilities. Approximately one in five U.S. adults provides care to family members or friends who have a chronic health condition or disability. Promoting the well-being of this large segment of the population is a public health priority as recognized by the 2022 National Strategy to Support Family Caregivers. Although negative associations between caregiving and caregiver health are known, changes in the health status of caregivers over time are not. Data from the 2015-2016 and 2021-2022 Behavioral Risk Factor Surveillance System were analyzed to compare changes in the prevalence of 19 health indicators among cross-sectional samples of caregivers and noncaregivers at different time points. Caregivers experienced improvements in prevalence of four health indicators, whereas six worsened. Some health indicators, such as cigarette smoking, improved for both caregivers and noncaregivers, although smoking prevalence remained higher for caregivers (16.6% versus 11.7%). Prevalence of lifetime depression increased for both groups and remained higher among caregivers (25.6%) than among noncaregivers (18.6%). During 2021-2022, age-adjusted estimates for caregivers were unfavorable for 13 of the 19 health indicators when compared with noncaregivers. Strategies for supporting caregivers are available, and integrating these with existing programs to address mental health and chronic diseases among this population might improve caregiver well-being. For example, many community organizations support caregivers by offering interventions designed to relieve caregiver strain, including skills training, support groups, and care coordination.
Asunto(s)
Sistema de Vigilancia de Factor de Riesgo Conductual , Cuidadores , Humanos , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Estados Unidos/epidemiología , Masculino , Persona de Mediana Edad , Femenino , Adulto , Anciano , Adulto Joven , Indicadores de Salud , Adolescente , Estudios Transversales , Estado de Salud , PredicciónRESUMEN
INTRODUCTION: Supporting patient self-care and the contribution of their caregivers is crucial in chronic illness care. Inflammatory bowel disease (IBD) is a chronic condition whose prevalence is expected to double, especially in Western countries. IBD symptoms can negatively impact patients' well-being, causing high anxiety, depression, stress and reduced quality of life. These symptoms also affect the health of family members and friends, who often take on caregiving roles during exacerbations. Knowledge about self-care in IBD (IBD-SELF) is limited, and few studies have explored this context. This paper outlines a research protocol for a multicentre longitudinal study to investigate patient self-care and caregiver contributions to IBD-SELF. METHODS AND ANALYSIS: A sample of 250 consecutive patients diagnosed with IBD and their caregivers will be recruited from 9 dedicated IBD units in northern, central and southern Italy during outpatient visits. Data collection will occur at baseline, 6 and 12 months after enrolment. Multivariable regressions, path analyses and structural equation models will identify predictors (eg, health literacy, caregiver burden and depression) and outcomes (use of healthcare services, disease severity and quality of life) of self-care and caregiver contributions. Dyadic analyses will control for the interdependence of dyad members. ETHICS AND DISSEMINATION: Ethical approval was obtained from the Territorial Ethics Committee (Lazio 3) N. 0023486/23 and registered on ClinicalTrials.gov (Identifier number: NCT06015789). This study will enhance our understanding of the self-care process in the patient-caregiver dyad in IBD, aiding the design of future educational interventions and promoting greater patient and caregiver involvement in the care pathway. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov: NCT06015789.
Asunto(s)
Cuidadores , Enfermedades Inflamatorias del Intestino , Calidad de Vida , Autocuidado , Humanos , Autocuidado/psicología , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Calidad de Vida/psicología , Estudios Longitudinales , Enfermedades Inflamatorias del Intestino/psicología , Enfermedades Inflamatorias del Intestino/terapia , Depresión/epidemiología , Depresión/psicología , Masculino , Femenino , Italia/epidemiología , Ansiedad/epidemiología , Ansiedad/psicología , Índice de Severidad de la Enfermedad , Adulto , Proyectos de Investigación , Estudios Observacionales como AsuntoRESUMEN
Background and Objectives: Caregiving for geriatric patients is essential for ensuring the well-being and quality of life of older adults. Family caregivers play a crucial role, but they often face a significant burden that can lead to adverse mental health outcomes, including depression. This study aimed to estimate the prevalence of depression among caregivers of geriatric patients in Jeddah, Saudi Arabia, and to analyze its association with caregiver burden and various socio-demographic and caregiving parameters. Methods: A cross-sectional study was conducted in Jeddah, Saudi Arabia, between January and March 2024. Adult caregivers of geriatric patients were recruited through various social media platforms. Data were collected via an electronic questionnaire that included demographic information, caregiving parameters, the Patient Health Questionnaire-9 (PHQ-9) for depression screening, and the Zarit Burden Interview (ZBI-12) for caregiver burden assessment. Data were analyzed using descriptive statistics, chi-square tests, and multivariate logistic regression. Results: Of the 269 participants, the average age was 32 years, and the gender distribution was nearly balanced. The prevalence of depression (PHQ-9 score ≥ 10) among caregivers was 45.4% (95% CI: 39.3, 51.5%). Significant factors associated with higher depression scores included younger age, female gender, single status, being a student, low income, and caregiving burden. In the multivariate analysis, female gender (OR 2.50, 95% CI 1.30-4.80) and caregiving burden (mild-to-moderate burden: OR 6.18, 95% CI 2.94-13.00; high burden: OR 22.75, 95% CI 8.75-59.13) were independent predictors of depression. Conclusions: The study highlights the high prevalence of depression among caregivers of geriatric patients in Jeddah and underscores the significant impact of caregiving burden on mental health. These findings emphasize the need for targeted interventions, such as mental health support, respite care programs, and culturally sensitive educational training, to mitigate caregiver burden and enhance the well-being of caregivers.
Asunto(s)
Cuidadores , Depresión , Humanos , Arabia Saudita/epidemiología , Estudios Transversales , Masculino , Femenino , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Depresión/epidemiología , Depresión/psicología , Adulto , Prevalencia , Persona de Mediana Edad , Anciano , Encuestas y Cuestionarios , Calidad de Vida/psicologíaRESUMEN
BACKGROUND: The caregiving scholarship widely acknowledges informal caregivers' contributions to maintaining older adults' health and well-being. However, informal caregivers encounter economic, physical, social, financial and psychological challenges when caring for older adults. The caregiving literature has shown variations in caregiving intensity and motivation between rural and urban informal caregivers of older adults. This situation is likely to result in rural-urban disparities in caregiver burden. However, the literature on predictors of caregiver burden is more focused on demographic, socio-economic, caregiving and health-related factors with very little attention to geographical dynamics. For this reason, the effects of demographic, socio-economic, caregiving, and health-related factors on the variations in caregiver burden between rural and urban informal caregivers of older adults are yet to be known in the sub-Saharan African context, including Ghana. Notably, the impact of geographical location on caregiver burden is mainly missing in the informal caregiving literature in Ghana. Situated within the stress process model, we determine the association between geographical location and caregiver burden among informal caregivers of older adults in Ghana. METHODS: This study employed data from a large cross-sectional survey on informal caregiving, health, and healthcare among caregivers of older adults aged 50 years or above (N = 1,853) in Ghana. We selected the World Health Organization Impact of Caregiving Scale to measure caregiver burden. Generalized multivariable linear regression models were employed to determine the association between geographical location and caregiver burden among informal caregivers of older adults. We reported beta values and standard errors with significance levels of 0.05 or less. RESULTS: The results showed that rural informal caregivers of older adults significantly have a decreased caregiver burden compared to urban informal caregivers (ß = -1.64; SE = 0.41). Also, participants across all the self-rated health categories (poor/very poor: ß = 12.63; SE = 1.65; fair: ß = 9.56; SE = 1.07; good: ß = 11.00; SE = 0.61, very good: ß = 7.03; SE = 0.49) have a significantly increased caregiver burden for the full sample and for both rural (poor/very poor: ß = 13.88; SE = 2.4; fair: ß = 6.11; SE = 1.62; good: ß = 9.97; SE = 0.96, very good: ß = 6.06; SE = 0.71) and urban (poor/very poor: ß = 11.86; SE = 2.25; fair: ß = 12.33; SE = 1.42; good: ß = 11.80; SE = 0.79, very good: ß = 7.90; SE = 0.67) participants. This study further revealed that participants with no financial support needs reported a decreased caregiver burden compared to those with financial support needs for the full sample (ß = -2.92, p-value < 0.01) and for both rural (ß = -3.20; p-value < 0.01) and urban (ß =-2.70; p-value < 0.01) participants. CONCLUSION: The findings from this study underscore geographical location differences in caregiver burden among informal caregivers of older adults in Ghana. Given these findings, the need to consider geographical location variations in providing welfare and health support programs to lessen caregiver burden among informal caregivers of older adults is welcomed. In line with the stress process model, such welfare and health programs should consider background, context, and stressor factors that contribute to variations in caregiver burden between rural and urban informal caregivers of older adults in Ghana and other sub-Saharan African countries.
Asunto(s)
Carga del Cuidador , Cuidadores , Población Rural , Población Urbana , Humanos , Ghana , Masculino , Femenino , Persona de Mediana Edad , Población Rural/estadística & datos numéricos , Población Urbana/estadística & datos numéricos , Anciano , Estudios Transversales , Carga del Cuidador/psicología , Cuidadores/psicología , Cuidadores/economía , Cuidadores/estadística & datos numéricos , Factores Socioeconómicos , Estado de SaludRESUMEN
OBJECTIVE: Hospitalized children are a potentially underimmunized population. We sought to determine the proportion of patients admitted to our pediatric medicine inpatient units who are underimmunized or unimmunized and to identify barriers to immunization faced by families of children admitted to hospital. METHODS: We conducted a prospective study of children aged 2 months to 18 years admitted to our pediatric medicine inpatient units between July 2021 and October 2022. Immunization and demographic data were collected from electronic medical charts. Immunization status of each child was categorized as up-to-date if they had received all eligible vaccine doses in accordance with the provincial immunization schedule. Caregivers completed a survey on barriers to immunizations; results were compared between caregivers of children whose vaccines were up-to-date and those who were not. RESULTS: Hospitalized children were missing more doses of the preschool vaccines than the general population based on published provincial data. Only 142 of 244 (58.2%) of study patients were up-to-date on all their immunizations. Caregivers of children whose immunizations were not up-to-date reported significantly more barriers to vaccination in all survey categories: access to shots, concerns about shots, and importance of shots. CONCLUSIONS: There is a disparity in immunization status between children admitted to hospital in a Canadian setting compared with national targets and community immunization rates. Caregivers of underimmunized hospitalized children cited significantly more barriers to immunization when compared with hospitalized children who are up-to-date. Pursuing a hospital-based immunization strategy could lead to improved immunization status for hospitalized children.
Asunto(s)
Niño Hospitalizado , Humanos , Preescolar , Lactante , Niño , Masculino , Estudios Prospectivos , Femenino , Niño Hospitalizado/estadística & datos numéricos , Adolescente , Cuidadores/estadística & datos numéricos , Vacunación/estadística & datos numéricos , Inmunización/estadística & datos numéricos , Esquemas de Inmunización , Hospitalización/estadística & datos numéricos , Canadá , Accesibilidad a los Servicios de Salud/estadística & datos numéricosRESUMEN
BACKGROUND: Seasonal malaria chemoprevention (SMC) is a World Health Organization-recommended intervention for the prevention of malaria among children at high risk in areas with seasonal transmission. During the coronavirus disease 2019 (COVID-19) pandemic, SMC drug distribution was rapidly adapted to reduce contact and mitigate the risk of transmission between communities and community distributors, with caregivers administering doses. To address the challenges and find local solutions to improve administration and adherence, the role model approach was designed, implemented and evaluated in selected communities of Burkina Faso, Chad and Togo. This paper describes the results of this evaluation. METHODS: Focus group discussions were held with primary caregivers in all three countries to understand their perceptions of the approach's acceptability and feasibility. In Burkina Faso and Togo, household surveys assessed the characteristics of caregivers reached by role model activities. Key indicators on SMC coverage and adherence allowed for an assessment of caregiver engagement outcomes related to participation in activities. Statistical associations between participation in study's activities and caregiver beliefs related to SMC had been tested. RESULTS: The majority of caregivers believed the approach to have a positive effect on drug administration, with most adopting the promoted strategies. Greater involvement of fathers in drug administration and acknowledgement of their joint responsibility was a notable positive outcome. However, several barriers to participation were noted and there was criticism of the group approach. In Burkina Faso and Togo, end-of-round survey results revealed that 98.4% of respondents agreed the approach improved their knowledge and skills in malaria prevention, while 100% expressed a desire to continue practicing the behaviours learned. However, there was a relatively low level of awareness of the approach among communities. Participation was strongly associated with participants' self-reported belief in ease of remembering to administer, and ease of administering, SMC medicines. CONCLUSION: Caregivers perceived the role model approach to be beneficial in aiding drug administration, with other positive impacts also reported. Replication and scale-up should utilize the most popular communication channels and existing community structures to ensure activities are promoted effectively. A mixture of group and one-on-one approaches should be used where appropriate and feasible.
Asunto(s)
Amodiaquina , Antimaláricos , Cuidadores , Combinación de Medicamentos , Malaria , Pirimetamina , Sulfadoxina , Humanos , Togo , Burkina Faso , Antimaláricos/administración & dosificación , Antimaláricos/uso terapéutico , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Preescolar , Lactante , Malaria/prevención & control , Pirimetamina/administración & dosificación , Pirimetamina/uso terapéutico , Sulfadoxina/administración & dosificación , Sulfadoxina/uso terapéutico , Chad , Amodiaquina/administración & dosificación , Amodiaquina/uso terapéutico , Femenino , Masculino , Grupos Focales , AdultoRESUMEN
BACKGROUND: Long-term care insurance (LTCI) in China provides financial and care security for persons with disabilities and includes caregivers in the paid labour workforce. However, it is unclear how the LTCI affects health outcomes in female recipients, female caregivers, and female non-recipients and female non-caregivers. METHODS: Using the China Health and Retirement Longitudinal Study data and staggered difference-in-differences method, we evaluated the effect of LTCI on health outcomes in women with different roles, including female recipients, female caregivers, and female non-recipients and female non-caregivers, and discussed the heterogeneity of the effect on women's health outcomes. RESULTS: LTCI statistically significant increased self-rated health and reduced depression in women and improved the health in women with different roles by increasing self-rated health in female recipients, reducing chronic diseases in female caregivers, and reducing depression in female non-recipients and female non-caregivers. There was a more pronounced improvement in health outcomes among women in the west and northeast and women in rural village. CONCLUSIONS: After the implementation of LTCI, health outcomes in female recipients, female caregivers, and female non-recipients and female non-caregivers were improved. LTCI' improvement on women's health outcomes was heterogeneous geographically and socially. Our findings highlight the importance of delivering differentiated health interventions for women with different roles in the implementation process of LTCI and minimizing women's health inequalities in geography and society.
Asunto(s)
Personas con Discapacidad , Seguro de Cuidados a Largo Plazo , Salud de la Mujer , Humanos , Femenino , China/epidemiología , Persona de Mediana Edad , Estudios Longitudinales , Personas con Discapacidad/estadística & datos numéricos , Seguro de Cuidados a Largo Plazo/estadística & datos numéricos , Anciano , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Estado de Salud , Depresión/epidemiologíaRESUMEN
BACKGROUND: Domestic, family and sexual violence is a prevalent health and social issue. Nurses may be exposed to higher rates of this violence in their personal lives compared to the community, but little is known about their polyvictimisation experiences or health and well-being impacts. METHODS: An online descriptive, cross-sectional survey of women nurses, midwives and carer members of the Australian Nursing and Midwifery Federation (ANMF) (Victorian Branch) (response rate: 15.2% of nurses sent an invitation email/28.4% opened the email). Violence survey measures included: intimate partner violence (Composite Abuse Scale); child abuse and sexual violence (Australian Bureau of Statistics Personal Safety Survey items). Health measures included: Short Form-12; Fast Alcohol Screening Test; Patient Health Questionnaire-4; Short Screening for DSM-IV Posttraumatic Stress Disorder; well-being measures included: Connor-Davidson Resilience Scale, social support, and financial stress. Proportions were used to describe the prevalence of violence by sociodemographic characteristics and health and well-being issues; logistic regression predicted the odds of experiencing overlapping types of violence and of experiencing health and well-being outcomes. RESULTS: 5,982 participants (from a parent study of 10,674 nurses, midwives and carers) had experienced at least one type of lifetime violence; half (50.1%) had experienced two or three types (polyvictimisation). Survivors of child abuse were three times more likely to experience both intimate partner violence and non-partner adult sexual assault. Any violence was associated with poorer health and well-being, and the proportion of affected participants increased as the types of violence they had experienced increased. Violence in the last 12-months was associated with the poorest health and well-being. CONCLUSIONS: Findings suggest a cumulative, temporal and injurious life course effect of domestic, family and sexual violence. The polyvictimisation experiences and health and well-being associations reported by survivor nurses, midwives and carers underscores the need for more accessible and effective workplace interventions to prevent and mitigate psychosocial ill health, especially in the recent aftermath of violence.