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1.
BMC Health Serv Res ; 24(1): 613, 2024 May 10.
Article in English | MEDLINE | ID: mdl-38730298

ABSTRACT

BACKGROUND: Disparities in child healthcare service utilization are unacceptably high in Ethiopia. Nevertheless, little is known about underlying barriers to accessing child health services, especially among low socioeconomic subgroups and in remote areas. This study aims to identify barriers to equity in the use of child healthcare services in Ethiopia. METHODS: Data were obtained from 20 key- informant interviews (KII) and 6 focus group discussions (FGD) with mothers and care givers. This study was conducted in Oromia Region, Arsi Zone, Zuway Dugda District from June 1-30, 2023. The study participants for this research were selected purposively. The information was collected based on the principle of saturation after sixteen consecutives interview were conducted. Both KII and FGD were audio-recorded and complementary notes were taken to record observations about the participants' comments and their interactions. Each interview and FGD data were transcribed word-for-word in the local Afaan Oromo and Amaharic languages and then translated to English language. Finally, the data were analyzed thematically using NVivo 14 software and narrated in the linked pattern of child health service utilization. RESULTS: This study identified six major themes which emerged as barriers to healthcare utilization equity for caregivers and their -under-five children. Barriers related to equity in low level of awareness regarding need, low socioeconomic status, geographical inaccessibility, barriers related to deficient healthcare system, community perception and cultural restrictions, and barriers of equity related to political instability and conflict. The most commonly recognized barriers of equity at the community level were political instability, conflict, and a tremendous distance to a health facility. Transportation challenges, poor functional services, closure of the health facility in working hours, and lack of proper planning to address the marginalized populations were identified barriers of equity at organizational or policy level. CONCLUSION: This study showed that inequity in child healthcare utilization is an important challenge confronting Ethiopia. To achieve equity, policy makers and planners need to change health policy and structure to be pro-poor. It is also necessary to improve the healthcare system to increase service utilization and access for impoverished women, individuals with lower levels of education, and residents of isolated rural areas. Furthermore, context specific information pertaining to cultural barriers and political ecology are required.


Subject(s)
Child Health Services , Focus Groups , Health Services Accessibility , Qualitative Research , Humans , Ethiopia , Health Services Accessibility/statistics & numerical data , Female , Child Health Services/statistics & numerical data , Child, Preschool , Male , Adult , Healthcare Disparities , Infant , Interviews as Topic , Patient Acceptance of Health Care/statistics & numerical data , Socioeconomic Factors , Caregivers/statistics & numerical data , Caregivers/psychology
2.
JMIR Aging ; 7: e50759, 2024 May 01.
Article in English | MEDLINE | ID: mdl-38717339

ABSTRACT

Background: Informal caregivers are called upon to provide substantial care, but more needs to be known about technology use among older adult and caregiver dyads. Objective: This study described technology use among older adults and their caregivers, explored potential correlates of technology use, and highlighted implications for practice. Methods: A cross-sectional survey was conducted among unpaid caregivers of older adults (n=486). Primary outcomes were self-reported technology (devices and functions) use among caregivers and their oldest care recipient. The concordance of technology use among caregivers and care recipients was also examined. Multivariable regression models were conducted separately for caregivers and care recipients. Results: Greater proportions of caregivers used all examined technologies, except for the medication alerts or tracking function, than care recipients. Caregivers used an average of 3.4 devices and 4.2 functions, compared to 1.8 devices and 1.6 functions used by their care recipients. Among caregivers, younger age, higher income, and higher education were associated with more technology use (P<.05). Among care recipients, younger age, not having cognitive dysfunction, and caregiver's technology use were associated with more technology use (P<.05). Conclusions: Understanding technology use patterns and device adoption across diverse caregiver and care recipient populations is increasingly important for enhancing geriatric care. Findings can guide recommendations about appropriate technology interventions and help providers communicate and share information more effectively with patients and their caregivers.


Subject(s)
Caregivers , Humans , Caregivers/psychology , Caregivers/statistics & numerical data , Cross-Sectional Studies , Male , Female , Aged , Aged, 80 and over , Middle Aged , Surveys and Questionnaires , Self Report , Technology
3.
BMJ Open ; 14(5): e079631, 2024 May 08.
Article in English | MEDLINE | ID: mdl-38719291

ABSTRACT

PURPOSE: The Adverse Childhood Experiences (ACE) cohort of the Malawi Longitudinal Study of Families and Health (MLSFH-ACE) is a study of adolescents surveyed during 2017-2021. It provides an important opportunity to examine the longitudinal impact of ACEs on health and development across the early life course. The MLSFH-ACE cohort provides rich data on adolescents, their children and adult caregivers in a low-income, high-HIV-prevalence context in sub-Saharan Africa (SSA). PARTICIPANTS: The MLSFH-ACE cohort is a population-based study of adolescents living in three districts in rural Malawi. Wave 1 enrolment took place in 2017-2018 and included 2061 adolescents aged 10-16 years and 1438 caregivers. Wave 2 took place in 2021 and included data on 1878 adolescents and 208 offspring. Survey instruments captured ACEs during childhood and adolescence, HIV-related behavioural risk, mental and physical health, cognitive development and education, intimate partner violence (IPV), marriage and aspirations, early transitions to adulthood and protective factors. Biological indicators included HIV, herpes simplex virus and anthropometric measurements. FINDINGS TO DATE: Key findings include a high prevalence of ACEs among adolescents in Malawi, a low incidence of HIV and positive associations between ACE scores and composite HIV risk scores. There were also strong associations between ACEs and both IPV victimisation and perpetration. FUTURE PLANS: MLSFH-ACE data will be publicly released and will provide a wealth of information on ACEs and adolescent outcomes in low-income, HIV-endemic SSA contexts. Future expansions of the cohort are planned to capture data during early adulthood.


Subject(s)
Adverse Childhood Experiences , HIV Infections , Humans , Malawi/epidemiology , Adolescent , Longitudinal Studies , Adverse Childhood Experiences/statistics & numerical data , Male , Female , Child , HIV Infections/epidemiology , Adult , Caregivers/statistics & numerical data , Prevalence , Rural Population/statistics & numerical data , Intimate Partner Violence/statistics & numerical data , Poverty , Health Status
4.
Hawaii J Health Soc Welf ; 83(5): 132-137, 2024 May.
Article in English | MEDLINE | ID: mdl-38716139

ABSTRACT

The 'Tausi Feagaiga (Covenant Keeper) project was a partnership to support the traditional values of tausi matua (caring for one's elders). The partners included a non-governmental organization (Pacific Youth and Community Development), a faith-based organization (Roman Catholic Diocese of Samoa-Pago Pago), and an institute of higher education (University of Hawai'i John A. Burns School of Medicine). The project was created to address the lack of community-based health care such as home health or hospice, and families needing to work outside the home. A culturally based caregiving curriculum was developed to educate caregivers and improve their knowledge and skills. Using a train-the-trainer model, 125 caregivers were trained in family caregiving from 2016-2020. Training was conducted through an intensive workshop followed by practicum at Hope House, the Catholic Diocese home for the aged. Participants who expressed a willingness and competency were mentored to be trainers to continue the 'Tausi Feagaiga project. The mean self-rated confidence in caregiving improved significantly from 3.17 ± 1.02 (mean SD) pre workshop to 3.53 ± 0.71 post workshop (P = .001). Competence in geriatric syndromes was improved from 18.04 ± 4.27 to 21.31 ± 4.30 after attending the workshop (P < .001) and the feedback was extremely positive. Technical assistance was provided to obtain funding through American Samoa Medicaid State Agency to improve the existing infrastructure of Hope House, obtain much needed supplies, and increase ability to hire the participants. 'Tausi Feagaiga positively impacted the lives of the residents of Hope House, the course participants, the elders in the community, and those who care for them.


Subject(s)
Caregivers , Humans , Caregivers/psychology , Caregivers/education , Caregivers/statistics & numerical data , American Samoa , Hawaii , Female , Male , Empowerment
5.
Rehabil Nurs ; 49(3): 86-94, 2024.
Article in English | MEDLINE | ID: mdl-38696434

ABSTRACT

PURPOSE: Most persons who have had strokes are cared for at home by family members-many of whom experience depressive symptoms and quality of life changes as a result of providing care. The objective of this study is to determine theoretically based factors associated with unhealthy days in stroke family caregivers. RESEARCH DESIGN AND METHODS: Secondary data analysis was conducted using baseline data from a large randomized controlled clinical trial testing the Telephone Assessment and Skill-Building Kit program with 254 family caregivers of persons who have had strokes. Guided by a conceptual model derived from Lazarus' transactional approach to stress, data were analyzed using multiple regression with unhealthy days as the dependent variable and theoretically based factors as independent variables. RESULTS: Caregivers were mostly female (78%), White (71%), spouses (47%), or adult children (29%). Caregivers reported nine unhealthy days on average within the past month. A total of 37.8% of the variance in unhealthy days was explained by caregiver task difficulty, level of optimism, threat appraisal, depressive symptoms, and life changes with depressive symptoms being the strongest individual predictor because of shared variance. CLINICAL RELEVANCE: Unhealthy days is an important part of stroke family caregiver health. Factors associated with unhealthy days in this study provide areas to consider in future intervention development.


Subject(s)
Caregivers , Stroke , Humans , Female , Caregivers/psychology , Caregivers/statistics & numerical data , Male , Middle Aged , Stroke/psychology , Stroke/complications , Stroke/nursing , Aged , Adult , Quality of Life/psychology , Depression/psychology , Stress, Psychological/psychology
6.
South Med J ; 117(5): 260-265, 2024 May.
Article in English | MEDLINE | ID: mdl-38701847

ABSTRACT

OBJECTIVES: Food insecurity (FI) is defined as limited or uncertain access to sufficient food for a healthy and active lifestyle. Our objective was to explore how the coronavirus disease 2019 (COVID-19) pandemic affected the FI status of pediatric patients and their families through interviewing caregivers who screen positive for FI. METHODS: Caregivers of all hospitalized patients at a tertiary children's hospital who screen positive for FI with a two-question screening tool were approached about enrolling in the study. Those who consented completed a presurvey and participated in a semistructured individual interview. Interviews were audio recorded, transcribed, and analyzed according to the guidelines of thematic analysis using NVivo 12. RESULTS: Interviews were conducted with 15 caregivers between July 2021 and January 2022. Caregivers were 100% female and 80% Black, 13% White, and 7% Hispanic/Latinx, with a mean age of 33 years. Seventy-three percent did not experience FI until the COVID-19 pandemic. Themes include lost wages, mothers forced out of the workforce due to childcare limitations, inflation and shortages of goods, increased stress/anxiety for caregivers and children, the centrality of extended family support, and the necessity/inadequacy of federal food programs. CONCLUSIONS: The COVID-19 pandemic impacted unemployment and poverty and consequently exacerbated FI. Our findings point to the need to focus on proximal societal solutions, such as federal policies aimed at food assistance and childcare. Understanding the challenges related to FI that caregivers and patients experience can improve screening, support, and treatment of patients presenting for care and inform the design of necessary interventions for individuals and communities beyond COVID-19.


Subject(s)
COVID-19 , Food Insecurity , Qualitative Research , Humans , COVID-19/epidemiology , Female , Male , Child , Adult , SARS-CoV-2 , Caregivers/psychology , Caregivers/statistics & numerical data , Child, Hospitalized/psychology , Child, Preschool , Food Supply/statistics & numerical data , Hospitalization/statistics & numerical data , Pandemics , Hospitals, Pediatric
8.
J Youth Adolesc ; 53(6): 1383-1395, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38564098

ABSTRACT

It is estimated that there are about 23% of all children in China experiencing parental migration and being left behind at hometown. Existing research indicated a significant association between parental migration and children development but overlooked the dynamic changes in family structure caused by parental migration. In this study, data was derived from a nationally representative longitudinal survey-the China Family Panel Studies. The main analyses employed four waves of data (2012, 2014, 2016, and 2018) and included 1401 adolescents aged 10-15 years (Mean:12.35, SD:1.67; 54.2% female). Six typical trajectories of parental migration capturing both migration status at each timepoint and changes in the status across six years were created. Children's depression and internalizing problems and externalizing problems were concerned outcomes. The mediating roles of the caregiver-child interaction and caregiver's depression were examined. Adolescents in the trajectory group described as experiencing transitions between being left behind by both parents and non had a higher risk of depression and internalizing and externalizing problems. Caregivers' depression was a significant mediator between parental migration and adolescent depression.


Subject(s)
Depression , Adolescent , Child , Female , Humans , Male , Adolescent Behavior/psychology , Caregivers/psychology , Caregivers/statistics & numerical data , China , Depression/psychology , Depression/epidemiology , East Asian People , Longitudinal Studies , Parent-Child Relations , Parents/psychology , Problem Behavior/psychology , Human Migration
9.
Soc Sci Med ; 348: 116821, 2024 May.
Article in English | MEDLINE | ID: mdl-38569284

ABSTRACT

OBJECTIVE: The demanding nature of caregiving and limited social support can lead to informal carers experiencing loneliness, which can impact their well-being and overall health service use (HSU). The study aims to examine the association between loneliness with HSU and Health state utility values among informal carers in Australia. METHODS: Data were derived from three waves (2009, 2013, and 2017) of the nationally representative longitudinal Household Income and Labour Dynamics of Australia (HILDA) survey, focusing on adult informal carers. Outcome measures included visits to the General Practitioner, the number of hospital admissions, and the SF-6D score. Generalized Estimating Equations (GEE) analysis was conducted to explore the associations between loneliness and HSU, as well as loneliness and utility values (based on SF-6D) while adjusting for age, sex, education, marital status, income, and physical/mental health conditions. RESULTS: After controlling for covariates, lonely carers reported lower utility values (IRR = 0.91, 95%CI [0.89, 0.93], p < 0.001) compared to non-lonely carers. Lonely carers reported a higher number of GP visits (IRR = 1.18, 95% CI [1.04, 1.36], p < 0.05) as well as a higher likelihood of visiting specialists (AOR = 1.31, p = 0.046) and hospital doctors (AOR = 1.42, p = 0.013) compared to the non-lonely carers. CONCLUSIONS: The findings of this study highlight the relationship between loneliness on both healthcare utilization and carers' overall well-being. Addressing loneliness through targeted interventions and social support systems can help improve health outcomes and potentially reduce the overall healthcare costs among informal carers in Australia.


Subject(s)
Caregivers , Loneliness , Quality of Life , Humans , Australia , Male , Female , Loneliness/psychology , Caregivers/psychology , Caregivers/statistics & numerical data , Middle Aged , Quality of Life/psychology , Adult , Aged , Longitudinal Studies , Patient Acceptance of Health Care/psychology , Patient Acceptance of Health Care/statistics & numerical data , Social Support , Health Services/statistics & numerical data , Surveys and Questionnaires
10.
Article in English | MEDLINE | ID: mdl-38673294

ABSTRACT

(1) Background: Climate change is increasing the already frequent diverse extreme weather events (EWE) across geographic locations, directly and indirectly impacting human health. However, current ongoing research fails to address the magnitude of these indirect impacts, including healthcare access. Vulnerable populations such as persons with spinal cord injury (pSCI) face added physiologic burden such as thermoregulation or mobility challenges like closure of public transportation. Our exploratory research assessed commute and transport to healthcare facilities as well as the knowledge, attitudes and behaviors (KAB) of pSCI regarding EWE and climate change when compared to pSCI caregivers (CG) and the general public (GP). (2) Methods: A KAB survey was employed to conduct a cross-sectional assessment of pSCI, CG, and GP in Miami from October through November 2019 using snowball sampling. Descriptive and logistic regression statistical analyses were used. (3) Results: Of 65 eligible survey respondents, 27 (41.5%) were pSCI, 11 (17%) CG, and 27 (41.5%) GP. Overall, pSCI reported EWE, particularly flooding and heavy rain, affecting their daily activities including healthcare appointments, more frequently than CG or GP. The overall models for logistic regression looking at commute to and attendance of healthcare appointments were statistically significant. pSCI self-report being less vulnerable than others, and a large proportion of each group was not fully convinced climate change is happening. (4) Conclusions: This study provided insight to the KAB of 3 population subgroups in Miami, Florida. pSCI are significantly more vulnerable to the effects of regional weather events yet exhibit disproportionate self-perception of their vulnerability. Continued and more comprehensive research is needed to characterize the barriers that vulnerable populations face during weather events.


Subject(s)
Caregivers , Climate Change , Spinal Cord Injuries , Florida , Humans , Spinal Cord Injuries/psychology , Adult , Female , Male , Middle Aged , Cross-Sectional Studies , Caregivers/statistics & numerical data , Caregivers/psychology , Survivors/psychology , Survivors/statistics & numerical data , Weather , Young Adult , Aged , Health Knowledge, Attitudes, Practice
11.
Article in English | MEDLINE | ID: mdl-38673381

ABSTRACT

Preventing sudden, unexpected infant death related to sleep, especially suffocation and sudden infant death syndrome, remains challenging globally. To evaluate factors associated with an unsafe sleep environment (SE) for infants in Japan, this cross-sectional study investigated the current status of practices and awareness among caregivers about a safe SE. Two hundred and fifty-four caregivers of infants in Yamaguchi Prefecture participated. Among the caregivers, 96.0% could not thoroughly practice a safe SE, although 65.0% had knowledge about a safe SE. More unsafe SE practices were significantly associated with 8- to 11-month-old infants than with 0- to 3-month-old infants, using the same practice as for an older child than with accessing information or a familiar person than with mass media as the most useful source of information. The differences in having knowledge were not associated with their practice. Many caregivers obtained information about an infant's SE from mass media and a familiar person. They preferred education via a face-to-face method by medical experts to raise awareness about a safe SE. Thus, efforts need to be developed in Japan in which experts who directly attend to caregivers can truly educate them to ensure that caregivers are continuously aware of the importance of an SE.


Subject(s)
Caregivers , Health Knowledge, Attitudes, Practice , Sleep , Sudden Infant Death , Humans , Cross-Sectional Studies , Japan , Infant , Caregivers/statistics & numerical data , Female , Male , Sudden Infant Death/prevention & control , Adult , Infant, Newborn , Surveys and Questionnaires , Middle Aged , East Asian People
12.
Medicina (Kaunas) ; 60(4)2024 Mar 29.
Article in English | MEDLINE | ID: mdl-38674206

ABSTRACT

Long-term changes in caregiver burden should be clarified considering that extended post-stroke disability can increase caregiver stress. We assessed long-term changes in caregiver burden severity and its predictors. This study was a retrospective analysis of the Korean Stroke Cohort for Functioning and Rehabilitation. Patients with an acute first-ever stroke were enrolled from August 2012 to May 2015. Data were collected at 6 months and 6 years after stroke onset. The caregiver burden was measured with a subjective caregiver burden questionnaire based on the Korean version of the Caregiver Burden Inventory. The caregivers' characteristics and patients' clinical and functional status were also examined at each follow-up. A high caregiver burden, which suggests a risk of burnout, was reported by 37.9% and 51.7% of caregivers at 6 months and 6 years post-stroke, respectively. Both the caregiver burden total score and proportion of caregivers at risk of burnout did not decrease between 6 months and 6 years. The patients' disability (OR = 11.60; 95% CI 1.58-85.08; p = 0.016), caregivers' self-rated stress (OR = 0.03; 95% CI 0.00-0.47; p = 0.013), and caregivers' quality of life (OR = 0.76; 95% CI 0.59-0.99; p = 0.042) were burden predictors at 6 months. At 6 years, only the patients' disability (OR = 5.88; 95% CI 2.19-15.82; p < 0.001) and caregivers' psychosocial stress (OR = 1.26; 95% CI 1.10-1.44; p = 0.001) showed significance. Nearly half of the caregivers were at risk of burnout, which lasted for 6 years after stroke onset. The patients' disability and caregivers' stress were burden predictors in both subacute and chronic phases of stroke. The findings suggest that consistent interventions, such as emotional support or counseling on stress relief strategies for caregivers of stroke survivors, may reduce caregiver burden. Further research is needed to establish specific strategies appropriate for Korean caregivers to alleviate their burden in caring for stroke patients.


Subject(s)
Caregiver Burden , Caregivers , Quality of Life , Stroke , Humans , Male , Female , Middle Aged , Stroke/psychology , Stroke/complications , Retrospective Studies , Caregivers/psychology , Caregivers/statistics & numerical data , Aged , Surveys and Questionnaires , Republic of Korea , Quality of Life/psychology , Caregiver Burden/psychology , Survivors/psychology , Survivors/statistics & numerical data , Adult , Stress, Psychological/psychology , Stress, Psychological/complications , Stress, Psychological/etiology , Stroke Rehabilitation/psychology , Stroke Rehabilitation/statistics & numerical data
13.
Medicina (Kaunas) ; 60(4)2024 Mar 31.
Article in English | MEDLINE | ID: mdl-38674230

ABSTRACT

Background and Objectives: Little is known about patients' and caregivers' experiences with atopic dermatitis (AD) in Argentina, so a survey was administered to learn more. Materials and Methods: A 53-item anonymous survey was administered in Spanish to adult AD patients (n = 334) and caregivers (n = 339) of pediatric AD patients in Argentina (total n = 673). Demographics, healthcare provider information, financial burden, disease severity, disease burden, level of disease-specific education, and experience with shared physician/patient decision making were collected. Linear and logistic regression models were used for statistical comparisons. Results: Survey respondents were overwhelmingly female (90.8%), as was the overall patient population (72.8%). Patients were seen mostly by healthcare specialists (66.8% dermatologists, 13.5% pediatricians, 7.7% allergists, and 7.2% general practitioners). Only 2.8% of respondents reported no symptoms, while 33.3%, 52.4%, and 11.5% reported mild, moderate, and severe AD disease, respectively. Anxiety/depression and pain/discomfort were the most impactful on respondents' quality of life. Caregivers of children with moderate to severe AD and adult patients with severe AD reported a significant financial burden, including using savings or not purchasing food or other essentials to afford medical care. Few people reported receiving disease-specific education or having their own treatment priorities taken into consideration. For adult patients, receiving disease education and being asked about treatment priorities were associated with higher treatment satisfaction and AD control. Discussion: Mental health, pain/discomfort, and financial worries are the most important burdens for adult AD patients and caregivers of children with AD in Argentina. We recommend prioritizing disease-specific education and shared decision making to improve AD care in Argentina.


Subject(s)
Caregivers , Cost of Illness , Dermatitis, Atopic , Humans , Female , Dermatitis, Atopic/psychology , Dermatitis, Atopic/therapy , Argentina , Caregivers/psychology , Caregivers/statistics & numerical data , Male , Adult , Surveys and Questionnaires , Middle Aged , Quality of Life/psychology , Adolescent , Child , Severity of Illness Index
14.
Fam Syst Health ; 42(1): 68-75, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38647493

ABSTRACT

BACKGROUND: Strength of evidence is key to advancing children's mental health care but may be inadequate for driving practice change. The Designing for Accelerated Translation (DART) framework proposes a multifaceted approach: pace of implementation as a function of evidence of effectiveness, demand for the intervention, sum of risks, and costs. To inform empirical applications of DART, we solicited caregiver preferences on key elements. METHOD: In March-April 2022, we fielded a population-representative online survey in Illinois households (caregivers N = 1,326) with ≥1 child <8 years old. Six hypothetical scenarios based on the DART framework were used to elucidate caregivers' preferences on a 0-10 scale (0 = never; 10 = as soon as possible) for pace of implementation of a family-based program to address mental health concerns. RESULTS: Caregivers' pace preference scores varied significantly for each scenario. The highest mean score (7.28, 95% confidence interval [95% CI: 7.06, 7.50]) was for a scenario in which the child's provider thinks the program would be helpful (effectiveness) and the caregiver believes the program is needed (demand). In contrast, the lowest mean score (5.13, 95% CI [4.91, 5.36]) was for a scenario in which online information implies the program would be helpful (effectiveness) and the parent is concerned about the program's financial costs (cost). Caregivers' pace preference scores did not vary consistently by sociodemographic factors. CONCLUSION: In this empirical exploration of the DART framework, factors such as demand, cost, and risk, in combination with evidence of effectiveness, may influence caregivers' preferred pace of implementation for children's mental health interventions. (PsycInfo Database Record (c) 2024 APA, all rights reserved).


Subject(s)
Evidence-Based Practice , Parents , Humans , Female , Child , Male , Evidence-Based Practice/methods , Parents/psychology , Surveys and Questionnaires , Illinois , Child, Preschool , Mental Health Services/statistics & numerical data , Mental Health Services/standards , Mental Health Services/trends , Adult , Caregivers/psychology , Caregivers/statistics & numerical data
15.
Curr Med Res Opin ; 40(5): 863-876, 2024 May.
Article in English | MEDLINE | ID: mdl-38571385

ABSTRACT

OBJECTIVE: This study assessed the burden of Wilson Disease (WD) among patients and care partners (WD-CPs) in the US and compared it to a US general population of adults (GPs) and care partners (GP-CPs). METHODS: This cross-sectional, self-reported survey included patients with WD and WD-CPs aged ≥18 years recruited through the Wilson Disease Association (WDA), while data for GPs and GP-CPs were obtained from the 2022 National Health and Wellness Survey. GPs and GP-CPs were propensity score matched (3:1) with WD patients and WD-CPs for demographics and health characteristics. Bivariate analysis evaluated differences in comorbidity burden and health-related outcomes of the WD cohorts compared to matched GP cohorts. RESULTS: Thirty-seven patients with WD and 53 WD-CPs completed the survey. Most patients reported some treatment burden (73.3%), experienced sleep problems (60%), and visited a healthcare provider (HCP) in the past 6 months (91.9%). Compared with matched GPs, patients with WD had a significantly higher mortality risk (p < .001) and reported greater rates of chronic liver disease, cirrhosis (both, p < .001), migraines (p = .032), non-alcoholic steatohepatitis (p = .004), sleep problems (p = .009) and HCP visits (p = .002). Most WD-CPs (75.5%) reported high burden of caring (mean ZBI-12 score, 26.5) and more negative impact on esteem than GP-CPs. CONCLUSION: This study highlights the burden of WD experienced by patients and WD-CPs, with patients experiencing high treatment burden, comorbidity burden and healthcare resource utilization, and WD-CPs experiencing high impact of caring, including impact on employment and self-esteem.


Wilson Disease (WD) is a rare genetic disorder that results from copper building up in the liver and the central nervous system. The management of WD has been consistent for the past 50 years. We surveyed patients with WD and family members of patients with WD ("care partners," hereby referred to as WD-CPs) residing in the US, to understand the burden of WD. We also used data from the 2022 National Health and Wellness Survey to compare patients with and WD-CPs to a sample of adults and care partners of adults in the general population (hereby referred to as GP and GP-CPs). The study found that the majority of the patients with WD reported some treatment burden (73.3%), experienced sleep problems (60.0%), and visited a healthcare provider (HCP) in the past 6 months (91.9%). Compared to GPs, patients with WD had a significantly higher risk of dying in the next 10 years and reported greater rates of other health conditions (chronic liver disease, cirrhosis, migraines, and non-alcoholic steatohepatitis), sleep problems, and visits to healthcare providers in the last 6 months. The majority of WD-CPs (75.5%) reported high burden of caring and more negative impact on their self-esteem than GP-CPs. Overall, this study highlights the burden of WD and suggests the need for more effective treatments that can reduce this burden.


Subject(s)
Hepatolenticular Degeneration , Humans , Male , Female , Hepatolenticular Degeneration/epidemiology , Hepatolenticular Degeneration/therapy , Cross-Sectional Studies , Adult , Middle Aged , United States/epidemiology , Cost of Illness , Caregivers/statistics & numerical data , Young Adult , Surveys and Questionnaires
16.
Soc Sci Med ; 348: 116781, 2024 May.
Article in English | MEDLINE | ID: mdl-38547806

ABSTRACT

Experiencing the death of a family member and providing end-of-life caregiving can be stressful on families - this is well-documented in both the caregiving and bereavement literatures. Adopting a linked-lived theoretical perspective, exposure to the death and dying of one family member could be conceptualized as a significant life stressor that produces short and long-term health consequences for surviving family members. This study uses familial-linked administrative records from the Utah Population Database to assess how variations in family hospice experiences affect mortality risk for surviving spouses and children. A cohort of hospice decedents living in Utah between 1998 and 2016 linked to their spouses and adult children (n = 37,271 pairs) provides an ideal study population because 1) hospice typically involves family members in the planning and delivery of end-of-life care, and 2) hospice admission represents a conscious awareness and acknowledgment that the decedent is entering an end-of-life experience. Thus, hospice duration (measured as the time between admission and death) is a precise measure of the family's exposure to an end-of-life stressor. Linking medical records, vital statistics, and other administrative microdata to describe decedent-kin pairs, event-history models assessed how hospice duration and characteristics of the family, including familial network size and coresidence with the decedent, were associated with long-term mortality risk of surviving daughters, sons, wives (widows), and husbands (widowers). Longer hospice duration increased mortality risk for daughters and husbands, but not sons or wives. Having other family members in the state was protective, and living in the same household as the decedent prior to death was a risk factor for sons. We conclude that relationship type and sex likely modify the how of end-of-life stressors (i.e., potential caregiving demands and bereavement experiences) affect health because of normative gender roles. Furthermore, exposure to dementia deaths may be particularly stressful, especially for women.


Subject(s)
Caregivers , Humans , Female , Male , Aged , Caregivers/psychology , Caregivers/statistics & numerical data , Middle Aged , Utah/epidemiology , Terminal Care/psychology , Terminal Care/statistics & numerical data , Aged, 80 and over , Hospice Care/statistics & numerical data , Hospice Care/psychology , Adult , Family/psychology , Mortality/trends , Bereavement , Hospices/statistics & numerical data , Risk Factors , Stress, Psychological/psychology , Cohort Studies
17.
Article in English | MEDLINE | ID: mdl-38486366

ABSTRACT

OBJECTIVES: This study provides one of the first national longitudinal studies of the association between caring for grandchildren (i.e., grandparenting) and the risk of dementia in the United States, with a focus on gender-specific variations. METHODS: We estimated discrete-time event history models, drawing upon data from the Health and Retirement Study (2000-2016). The analytic sample included 10,217 community-dwelling White and Black grandparents aged 52 years and older at baseline. RESULTS: Noncoresident grandparenting was associated with a lower risk of dementia for both women and men compared to grandparents who did not take care of grandchildren. However, the cognitive advantage showed different patterns based on gender and the combination of care intensity and family structure. Grandmothers had a lower risk of dementia than noncaregiving grandmothers when providing a light level of noncoresident grandparenting, whereas grandfathers who provided intensive noncoresident grandparenting had a reduced risk of dementia compared to their noncaregiving counterparts. Grandparenting experiences within multigenerational households and skipped-generation households were not associated with dementia risk. DISCUSSION: Intergenerational caregiving plays a pivotal role in shaping cognitive health during later life; however, the impact is nuanced, depending on factors such as gender, care intensity, and family structure.


Subject(s)
Dementia , Grandparents , Humans , Female , Dementia/epidemiology , Dementia/prevention & control , Male , Aged , Middle Aged , Grandparents/psychology , Longitudinal Studies , Sex Factors , United States/epidemiology , Intergenerational Relations , Aged, 80 and over , Risk Factors , Caregivers/psychology , Caregivers/statistics & numerical data , Protective Factors , Independent Living/psychology
18.
Arch Gerontol Geriatr ; 122: 105393, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38452651

ABSTRACT

OBJECTIVE: To analyze the effects of personal income on the relationship between intergenerational support (IS) and cognitive functioning. METHODS: Data were obtained from four waves of nationally representative surveys of the 2011-2018 China Health and Retirement Longitudinal Study (CHARLS), involving 8,207 participants aged 45 ∼ 60 at baseline. Multivariate linear regression models using generalized estimating equations were used to analyze the effects of three forms of intergenerational mutual supports on cognitive functioning in middle-aged adults, and subgroup regressions were used to analyze the moderating role of personal income in this relationship. RESULTS: The results showed that financial and caregiving support from children impaired the cognitive functioning of their parents; whereas providing financial support to children and mutual emotional support with them positively affected their cognition; however, childcare was not significantly associated with cognitive levels in middle-aged adults. Moreover, the effect of IS on the cognitive level of Chinese middle-aged people disappeared or was attenuated by having pensions or earning their own post-tax income. CONCLUSION: IS has a significant effect on cognitive functioning in middle-aged adults, but this effect is moderated by personal income. These results are informative for the development of intergenerational relationship intervention programs for the prevention of cognitive decline in middle-aged adults with different personal income.


Subject(s)
Cognition , Income , Intergenerational Relations , Humans , Male , Female , Income/statistics & numerical data , Middle Aged , China/epidemiology , Longitudinal Studies , Social Support , Cognitive Dysfunction/epidemiology , Caregivers/psychology , Caregivers/statistics & numerical data , East Asian People
19.
Psychogeriatrics ; 24(3): 565-571, 2024 May.
Article in English | MEDLINE | ID: mdl-38382557

ABSTRACT

BACKGROUND: While rapid population ageing is occurring worldwide, its speed is especially prominent in Asian countries. In Asia, cultural diversity might significantly affect care burden; however, few studies have investigated the differences in care burden, and mental, physical and social conditions among Asian countries. This study aimed to clarify the situations of and differences in family caregivers (FCs) of older persons in Japan and Thailand, and evaluate the factors associated with care burden in both countries. METHODS: A cross-national survey of 217 in-home FCs was conducted in Japan and Thailand and mainly included items regarding care burden and psychosocial conditions. Differences between the two countries were obtained, and the factors associated with care burden were analysed by multiple regression analyses. RESULTS: The FCs' and care receivers' mean ages (64.8 ± 11.1 and 84.8 ± 8.6 years, respectively) in Japan were significantly higher than the mean ages (49.1 ± 13.3 and 77.1 ± 9.5 years) in Thailand. In Japan, FCs had more severe care burden, loneliness, and stress compared to those in Thailand. In Thailand, FCs had more social connections and informal support than those in Japan. The factors associated with care burden were different in each country; thus, severe stress, low emotional care preparation, and low willingness to continue care at home were significantly associated with severe care burden in Japan, whereas poor relationships with care receivers, few social connections, low confidence in providing care, low emotional care preparation, and lack of informal support were significantly associated with severe care burden in Thailand. CONCLUSIONS: Despite there being a long-term care insurance system in Japan, which is absent in Thailand, care burden and psychosocial conditions of FCs might be worse in Japan. There was a clear difference in the factors associated with care burden between Japan and Thailand.


Subject(s)
Caregivers , Humans , Thailand , Male , Caregivers/psychology , Caregivers/statistics & numerical data , Japan , Female , Aged , Middle Aged , Aged, 80 and over , Surveys and Questionnaires , Cross-Cultural Comparison , Social Support , Stress, Psychological/epidemiology , Stress, Psychological/psychology , Cross-Sectional Studies , Caregiver Burden/psychology , Loneliness/psychology , Adult , Family/psychology
20.
Acta Diabetol ; 61(5): 635-642, 2024 May.
Article in English | MEDLINE | ID: mdl-38381182

ABSTRACT

AIMS: In view of the imminent introduction of a novel category of disease-modifying treatments for type 1 diabetes (T1D) in European countries, it becomes imperative to understand the existing awareness and viewpoints of parents and caregivers of children and adolescents predisposed to T1D. This study aims to evaluate the perspectives of a cohort of parents and caregivers regarding using teplizumab to delay the onset of T1D in predisposed children and adolescents. METHODS: This single-center study used a survey-based approach. Parents or caregivers of children and adolescents with T1D having at least one additional child without T1D answered 15 questions assessing their awareness about teplizumab, their potential willingness to provide consent for its administration in case of eligibility, and their expectations regarding potential outcomes. RESULTS: Approximately half of the participants (52.6%) expressed readiness to consent to teplizumab administration for their child if the prescription criteria were met in the future. Only 6.3% of parents claimed detailed knowledge about this innovative medication. Notably, parents with prior experience of diabetic ketoacidosis (DKA) demonstrated a higher inclination to consent to teplizumab treatment (p = 0.018). CONCLUSIONS: Our findings underscore the necessity for comprehensive awareness campaigns spreading the current evidence concerning teplizumab in terms of both effectiveness and possible side effects. Additionally, our study reinforces the pivotal role of DKA prevention in successfully integrating disease-modifying treatments into clinical practice.


Subject(s)
Antibodies, Monoclonal, Humanized , Caregivers , Diabetes Mellitus, Type 1 , Parents , Humans , Diabetes Mellitus, Type 1/drug therapy , Adolescent , Child , Male , Female , Parents/psychology , Antibodies, Monoclonal, Humanized/therapeutic use , Caregivers/psychology , Caregivers/statistics & numerical data , Italy/epidemiology , Adult , Surveys and Questionnaires , Child, Preschool , Health Knowledge, Attitudes, Practice
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