COVID-19 Economic and Academic Stress on Mexican American Adolescents' Psychological Distress: Parents as Essential Workers.

OBJECTIVES: In a sample of Mexican American adolescents (N = 398; 51% females; aged 13-17), we examined the associations between psychological distress, COVID-19 household economic stress, COVID-19 academic stress, and whether these associations varied by adolescents' gender and by parents/caregivers' essential worker status. METHOD: First, linear regression models assessed the main effects of household economic and academic stress on psychological distress. Second, the moderating effects of gender and parents/caregivers' essential worker status on the association between household economic and academic stress, and psychological distress were examined. Third, the three-way interaction effect of household economic stress, gender, and parents/caregivers' essential worker status on psychological distress as well as the three-way interaction effect of academic stress, gender, and parents/caregivers' essential worker status on psychological distress were calculated. RESULTS: Household economic and academic stress were associated with psychological distress. However, these associations did not vary based on adolescents' gender or parents/caregivers' essential worker status. The three-way interaction for household economic stress, parents/caregivers' essential worker status, and gender for psychological distress was significant. Specifically, the effects of household economic stress on psychological distress was worse for boys than girls whose parents/caregivers were essential workers. Furthermore, the three-way interaction among academic stress, parents/caregivers' essential worker status, and gender was significant. Particularly, the effects of academic stress when grades were worse on adolescents' psychological distress was worse for boys than girls whose parents/caregivers were essential workers. CONCLUSION: Parents/caregivers' essential worker status was salient among Mexican American adolescents' mental health outcomes during COVID-19, particularly for adolescent boys.

Making visible the cost of informal caregivers' time in Latin America: a case study for major cardiovascular, cancer and respiratory diseases in eight countries.

BACKGROUND: Informal care is a key element of health care and well-being for society, yet it is scarcely visible and rarely studied in health economic evaluations. This study aims to estimate the time use and cost associated with informal care for cardiovascular diseases, pneumonia and ten different cancers in eight Latin American countries (Argentina, Brazil, Chile, Colombia, Costa Rica, Ecuador, Mexico and Peru). METHODS: We carried out an exhaustive literature review on informal caregivers' time use, focusing on the selected diseases. We developed a survey for professional caregivers and conducted expert interviews to validate this data in the local context. We used an indirect estimate through the interpolation of the available data, for those cases in which we do not found reliable information. We used the proxy good method to estimate the monetary value of the use of time of informal care. National household surveys databases were processed to obtain the average wage per hour of a proxy of informal caregiver. Estimates were expressed in 2020 US dollars. RESULTS: The study estimated approximately 1,900 million hours of informal care annually and $ 4,300 million per year in average informal care time cost for these fifteen diseases and eight countries analyzed. Cardiovascular diseases accounted for an informal care burden that ranged from 374 to 555 h per year, while cancers varied from 512 to 1,825 h per year. The informal care time cost share on GDP varied from 0.26% (Mexico) to 1.38% (Brazil), with an average of 0.82% in the studied American countries. Informal care time cost represents between 16 and 44% of the total economic cost (direct medical and informal care cost) associated with health conditions. CONCLUSIONS: The study shows that there is a significant informal care economic burden -frequently overlooked- in different chronic and acute diseases in Latin American countries; and highlights the relevance of including the economic value of informal care in economic evaluations of healthcare.

Time Costs and Out-of-Pocket Costs in Patients With Chronic Hepatitis C in a Publicly Funded Health System.

OBJECTIVES: Chronic hepatitis C (CHC) infection affects more than 70 million people worldwide and imposes considerable health and economic burdens on patients and society. This study estimated 2 understudied components of the economic burden, patient out-of-pocket (OOP) costs and time costs, in patients with CHC in a tertiary hospital clinic setting and a community clinic setting. METHODS: This was a multicenter, cross-sectional study with hospital-based (n = 174) and community-based (n = 101) cohorts. We used a standardized instrument to collect healthcare resource use, time, and OOP costs. OOP costs included patient-borne costs for medical services, nonprescription drugs, and nonmedical expenses related to healthcare visits. Patient and caregiver time costs were estimated using an hourly wage value derived from patient-reported employment income and, where missing, derived from the Canadian census. Sensitivity analysis explored alternative methods of valuing time. Costs were reported in 2020 Canadian dollars. RESULTS: The mean 3-month OOP cost was $55 (95% confidence interval [CI] $21-$89) and $299 (95% CI $170-$427) for the community and hospital cohorts, respectively. The mean 3-month patient time cost was $743 (95% CI $485-$1002) (community) and $465 (95% CI $248-$682) (hospital). The mean 3-month caregiver time cost was $31 (95% CI $0-$63) (community) and $277 (95% CI $174-$380) (hospital). Patients with decompensated cirrhosis bore the highest costs. CONCLUSIONS: OOP costs and patient and caregiver time costs represent a considerable economic burden to patient with CHC, equivalent to 14% and 21% of the reported total 3-month income for the hospital-based and community-based cohorts, respectively.

A Systematic Review of the Indirect and Social Costs in Early and Young Onset Dementias.

BACKGROUND: The World Health Organization has estimated that worldwide around 50 million people have dementia. The World Alzheimer Report estimated that between 2 and 10% of all cases of dementia begin before the age of 65. Early and young onset dementias (EYOD) provoke more working, social, family, and economic consequences than late onset dementias. All general studies about costs of dementias show that most of them are indirect or social costs. Despite that, very few studies have been performed in EYOD. OBJECTIVE: To do a systematic review of literature about indirect or social costs in EYOD to know the state of knowledge and to discover gaps that should be filled. METHODS: A systematic review was performed in the main database: Scopus, PsychInfo, Web of Science (Web of Science Core Collection, Medline and SciELO), and CINAHL. Additionally, we looked for reviews in Cochrane and in the International Prospective Register Of Systematic Reviews (PROSPERO). RESULTS: Most of the studies are about costs of dementias in general, but they do no differentiate costs for the case of EYOD. Many studies highlight the increased costs for EYOD but very little included evidence of that. 135 papers were selected. Finally, only two were studies providing data. EYOD reduce the odds to get or maintain a job. Most of the care is provided by informal caregivers. The costs in EYOD are 39.26% higher among EYOD than in late onset. CONCLUSION: There is a lack of studies about social and indirect costs in EYOD. More evidence is needed.

Perspectiva econômica no cuidado intensivo neonatal: uma análise de custos hospitalares e para cuidadores de recém-nascidos / Economic perspective on neonatal intensive care: an analysis of hospital costs and caregivers of newborns

Em relação à demanda de recursos de saúde da atenção do RN e ao custo incorrido pelas famílias, esta dissertação se justifica por apresentar duas perspectivas de análise econômica: uma análise de custo direto sob a perspectiva do SUS provedor, através de uma estimativa de custos hospitalares do cuidado neonatal em uma UTIN selecionada em um hospital de referência nacional no município do Rio de Janeiro, e uma análise de custo indireto, sob a perspectiva das famílias, centrada no cuidador durante o período de internação nesta UTIN. O objeto desta pesquisa se centra na análise de custo do cuidado neonatal durante a internação do RN na UTIN, sob a perspectiva do SUS como provedor da atenção à saúde, e sob a perspectiva da família dos RN. Compreende-se, ainda, que os resultados obtidos nesta pesquisa poderão ser utilizados em estudos de avaliação econômica completos, além de incentivar pesquisas com a mesma temática, fortalecendo o conhecimento sobre as avaliações econômicas no campo do cuidado neonatal no Brasil. O custo direto evidenciou diferenças significativas em recém-nascidos com e sem malformações: a mediana do custo total foi 141% maior naqueles com malformação. O impacto na renda das famílias, abordadas neste estudo em virtude da internação de seus bebês na unidade neonatal, foi revelador ao demonstrar que, em pouco tempo de internação, um número expressivo de famílias experimentou gastos catastróficos: 69,4% das famílias (34 famílias), quando considerado o limiar de 10% da renda, e, para o limiar de 40%, 20,3% (10 famílias), e que esses gastos influenciaram diretamente, de forma negativa, na vivência desse processo, acendendo um sinal de alerta, pois uma parte desta população de RN não encerra sua demanda intensiva por cuidados assistenciais de saúde com a passagem pela unidade neonatal.

Regarding the demand for health care resources for the NB and the cost incurred by families, this dissertation is justified by presenting two perspectives of economic analysis: an analysis of direct cost from the perspective of the public health provider system, through an estimate of hospital costs of neonatal care in a neonatal unit, selected in a national reference hospital in the city of Rio de Janeiro, and an analysis of indirect cost from the perspective of families, centered on the caregiver during the period of hospitalization in this neonatal unit. This research focuses on the analysis of the cost of neonatal care during the hospitalization of newborns in the neonatal unit, from the perspective of the public health system as a provider of health care, and from the perspective of the newborn's family. It is also understood that the results obtained in this research can be used in complete economic evaluation studies, in addition to encouraging research on the same theme, strengthening knowledge about economic evaluations in the field of neonatal care in Brazil. The direct cost showed significant differences in newborns with and without malformations, the median total cost was 141% higher in those with malformations. The impact on the income of the families, addressed in this study due to the hospitalization of their babies in the neonatal unit, was revealing when demonstrating that, in a short period of hospitalization, a significant number of families experienced catastrophic expenses: 69.4% of the families (34 families), when considering the threshold of 10% of income, and for the threshold of 40%, 20.3% (10 families), and that these expenses had a direct negative influence in the experience of this process, lighting a warning signal because a part of this newborn population do not to end their intensive demand for health care with a visit to the neonatal unit.

Prevalence and Characteristics of Subjective Cognitive Decline Among Unpaid Caregivers Aged ≥45 Years - 22 States, 2015-2019.

Approximately 20% of U.S. adults are unpaid caregivers (caregivers) (1) who provide support to a family member or friend with a health condition or disability. Although there are benefits to caregiving, it can negatively affect caregivers' physical and mental health (2-4). Much of the assistance caregivers provide, such as administering medications or financial management, relies on cognitive ability, but little is known about caregivers' cognitive functioning. Subjective cognitive decline (SCD), the self-reported experience of worsening or more frequent confusion or memory loss over the past year (5), could affect caregivers' risk for adverse health outcomes and affect the quality of care they provide. CDC analyzed SCD among caregivers aged ≥45 years through a cross-sectional analysis of data from 22 states in the 2015-2019 Behavioral Risk Factor Surveillance System (BRFSS). Among adults aged ≥45 years, SCD was reported by 12.6% of caregivers who provided care to a family member or friend with a health condition or disability in the past 30 days compared with 10.2% of noncaregivers (p<0.001). Caregivers with SCD were more likely to be employed, men, aged 45-64 years, and have chronic health conditions than were noncaregivers with SCD. Caregivers with SCD were more likely to report frequent mental distress, a history of depression, and frequent activity limitations than were caregivers without SCD. SCD among caregivers could adversely affect the quality of care provided to care recipients. Understanding caregivers' cognitive health and the types of care provided is critical to maintaining the health, well-being, and independence of the caregiving dyad. Health care professionals can support patients and their patients' caregivers by increasing awareness among caregivers of the need to monitor their own health. The health care team can work with caregivers to identify potential treatments and access supports that might help them in their caregiving role and compensate for SCD.

Long-term Occupational Consequences for Families of Children With Type 1 Diabetes: The Mothers Take the Burden.

OBJECTIVE: To investigate the occupational and financial consequences for parents following the onset of type 1 diabetes in their child. RESEARCH DESIGN AND METHODS: A questionnaire assessing occupational and financial situations before and in the first year after the onset of diabetes was distributed to all families with a child ≤14 years of age at diagnosis with a diabetes duration of at least 12 months in nine German pediatric diabetes centers. RESULTS: Data of 1,144 children (mean age at diagnosis 6.7 [3.6] years; 46.5% female) and their families were obtained. Mothers' occupational status reflected in paid working hours was significantly reduced in the first year after their child's diabetes diagnosis (P < 0.001). Overall, 15.1% of mothers stopped working, and 11.5% reduced working hours. Mothers of preschool children were particularly affected. Fathers' working status hardly changed (P = 0.75). Nearly half of the families (46.4%) reported moderate to severe financial losses. Compared with an earlier similar study in 2003, significant negative occupational consequences for mothers and financial burden on families remained unchanged in 2018 (P = 0.59 and 0.31, respectively). CONCLUSIONS: Mothers of young children with newly diagnosed diabetes experienced negative consequences in their occupational situation. This inequality for mothers can have long-term negative consequences for their mental health and future economic situation. There is an urgent need for action to reduce the burden on families and to provide professional, social, and regulatory support, especially for mothers of young children with diabetes.

Cost-effectiveness analysis of integrated community case management delivery models utilizing drug sellers and community health workers for treatment of under-five febrile cases of malaria, pneumonia, diarrhoea in rural Uganda.

BACKGROUND: Malaria, pneumonia and diarrhoea continue to be the leading causes of death in children under the age of five years (U5) in Uganda. To combat these febrile illnesses, integrated community case management (iCCM) delivery models utilizing community health workers (CHWs) or drug sellers have been implemented. The purpose of this study is to compare the cost-effectiveness of delivering iCCM interventions via drug sellers versus CHWs in rural Uganda. METHODS: This study was a cost-effectiveness analysis to compare the iCCM delivery model utilizing drug sellers against the model using CHWs. The effect measure was the number of appropriately treated U5 children, and data on effectiveness came from a quasi-experimental study in Southwestern Uganda and the inSCALE cross-sectional household survey in eight districts of mid-Western Uganda. The iCCM interventions were costed using the micro-costing (ingredients) approach, with costs expressed in US dollars. Cost and effect data were linked together using a decision tree model and analysed using the Amua modelling software. RESULTS: The costs per 100 treated U5 children were US$591.20 and US$298.42 for the iCCM trained-drug seller and iCCM trained-CHW models, respectively, with 30 and 21 appropriately treated children in the iCCM trained-drug seller and iCCM trained-CHW models. When the drug seller arm (intervention) was compared to the CHW arm (control), an incremental effect of 9 per 100 appropriately treated U5 children was observed, as well as an incremental cost of US$292.78 per 100 appropriately treated children, resulting in an incremental cost-effectiveness ratio (ICER) of US$33.86 per appropriately treated U5 patient. CONCLUSION: Since both models were cost-effective compared to the do-nothing option, the iCCM trained-drug seller model could complement the iCCM trained-CHW intervention as a strategy to increase access to quality treatment.

Patient, family and productivity costs of end-stage renal disease in the Netherlands; exposing non-healthcare related costs.

BACKGROUND: Healthcare costs related to ESRD are well-described, but broader societal costs of ESRD are less known. This study aimed to estimate patient and family costs, including informal care costs and out-of-pocket costs, and costs due to productivity loss related to ESRD, for patients receiving dialysis and living with a kidney transplant, using a bottom-up approach. METHODS: A total of 655 patients were asked to complete a digital questionnaire consisting of two standardised instruments (iMCQ and iPCQ) from November 2016 through January 2017. We applied a retrospective bottom-up cost estimation by combining data from the questionnaire with unit prices from the Dutch costing manual. RESULTS: Our study sample consisted of 230 patients, of which 165 were kidney transplant recipients and 65 received dialysis. The total annual non-healthcare related costs were estimated at €8284 (SD: €14,266) for transplant recipients and €23,488 (SD: €39,434) for dialysis patients. Costs due to productivity loss contributed most to the total non-healthcare costs (66% for transplant recipients and 65% for dialysis patients), followed by informal care costs (26% resp. 29%) and out-of-pocket costs, such as medication and travel expenses (8% resp. 6%). CONCLUSION: By exposing patient, family and productivity costs, our study revealed that dialysis and transplantation are not only costly within the healthcare system, but also incur high non-healthcare costs (18-23% resp. 35% of the total societal costs). It is important to reveal these types of non-healthcare costs in order to understand the full burden of ESRD for society and the potential impact of new therapies.

Evaluation of the Cost-effectiveness of Drug Treatment for Alzheimer Disease in a Simulation Model That Includes Caregiver and Societal Factors.

Importance: The possibility of widespread use of a novel effective therapy for Alzheimer disease (AD) will present important clinical, policy, and financial challenges. Objective: To describe how including different patient, caregiver, and societal treatment-related factors affects estimates of the cost-effectiveness of a hypothetical disease-modifying AD treatment. Design, Setting, and Participants: In this economic evaluation, the Alzheimer Disease Archimedes Condition Event Simulator was used to simulate the prognosis of a hypothetical cohort of patients selected from the Alzheimer Disease Neuroimaging Initiative database who received the diagnosis of mild cognitive impairment (MCI). Scenario analyses that varied costs and quality of life inputs relevant to patients and caregivers were conducted. The analysis was designed and conducted from June 15, 2019, to September 30, 2020. Exposures: A hypothetical drug that would delay progression to dementia in individuals with MCI compared with usual care. Main Outcomes and Measures: Incremental cost-effectiveness ratio (ICER), measured by cost per quality-adjusted life-year (QALY) gained. Results: The model included a simulated cohort of patients who scored between 24 and 30 on the Mini-Mental State Examination and had a global Clinical Dementia Rating scale of 0.5, with a required memory box score of 0.5 or higher, at baseline. Using a health care sector perspective, which included only individual patient health care costs, the ICER for the hypothetical treatment was $192 000 per QALY gained. The result decreased to $183 000 per QALY gained in a traditional societal perspective analysis with the inclusion of patient non-health care costs. The inclusion of estimated caregiver health care costs produced almost no change in the ICER, but the inclusion of QALYs gained by caregivers led to a substantial reduction in the ICER for the hypothetical treatment, to $107 000 per QALY gained in the health sector perspective. In the societal perspective scenario, with the broadest inclusion of patient and caregiver factors, the ICER decreased to $74 000 per added QALY. Conclusions and Relevance: The findings of this economic evaluation suggest that policy makers should be aware that efforts to estimate and include the effects of AD treatments outside those on patients themselves can affect the results of the cost-effectiveness analyses that often underpin assessments of the value of new treatments. Further research and debate on including these factors in assessments that will inform discussions on fair pricing for new treatments are needed.

COVID-19 and UK family carers: policy implications.

Informal (unpaid) carers are an integral part of all societies and the health and social care systems in the UK depend on them. Despite the valuable contributions and key worker status of informal carers, their lived experiences, wellbeing, and needs have been neglected during the COVID-19 pandemic. In this Health Policy, we bring together a broad range of clinicians, researchers, and people with lived experience as informal carers to share their thoughts on the impact of the COVID-19 pandemic on UK carers, many of whom have felt abandoned as services closed. We focus on the carers of children and young people and adults and older adults with mental health diagnoses, and carers of people with intellectual disability or neurodevelopmental conditions across different care settings over the lifespan. We provide policy recommendations with the aim of improving outcomes for all carers.

Socioeconomic status and the likelihood of informal care provision in Japan: An analysis considering survival probability of care recipients.

Studies show that the burden of caregiving tends to fall on individuals of low socioeconomic status (SES); however, the association between SES and the likelihood of caregiving has not yet been established. We studied the relationship between SES and the likelihood of adults providing long-term care for their parents in Japan, where compulsory public long-term insurance has been implemented. We used the following six comprehensive measures of SES for the analysis: income, financial assets, expenditure, living conditions, housing conditions, and education. We found that for some SES measures the probability of care provision for parents was greater in higher SES categories than in the lowest category, although the results were not systematically related to the order of SES categories or consistent across SES measures. The results did not change even after the difference in the probability of parents' survival according to SES was considered. Overall, we did not find evidence that individuals with lower SES were more likely to provide care to parents than higher-SES individuals. Although a negative association between SES and care burden has been repeatedly reported in terms of care intensity, the caregiving decision could be different in relation to SES. Further research is necessary to generalize the results.

Major Cost Drivers in Assessing the Economic Burden of Alzheimer's Disease: A Structured, Rapid Review.

BACKGROUND: Alzheimer's Disease is the most common cause of dementia, affecting memory, thinking and behavior. Symptoms eventually grow severe enough to interfere with daily tasks. AD is predicted to increase healthcare spending and costs associated with formal and informal caregiving. The aim of this study was to identify and quantify the contribution of the different cost components associated with AD. METHODS: A structured literature review was conducted to identify studies reporting the economic burden of Alzheimer`s Disease beyond the healthcare setting. The search was conducted in Medline, Embase and EconLit and limited to studies published in the last 10 years. For each identified cost component, frequency weighted mean costs were calculated across countries to estimate the percentage contribution of each component by care setting and disease severity. Results obtained by each costing approach were also compared. RESULTS: For community-dwelling adults, the percentage of healthcare, social care and indirect costs to total costs were 13.9%, 17.4% and 68.7%, respectively. The percentage of costs varied by disease severity with 26.0% and 10.4% of costs spent on healthcare for mild and severe disease, respectively. The proportion of total spending on indirect costs changed from 60.7% to 72.5% as disease progressed. For those in residential care, the contribution of each cost component was similar between moderate and severe disease. Social care accounted on average for 85.9% of total costs. CONCLUSION: The contribution of healthcare costs to the overall burden was not negligible; but was generally exceeded by social and informal care costs.

The European multistakeholder PanCareFollowUp project: novel, person-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for cancer survivors and caregivers.

BACKGROUND: The majority of childhood cancer survivors are at risk of treatment-related adverse health outcomes. Survivorship care to mitigate these late effects is endorsed, but it is not available for many adult survivors of childhood cancer in Europe. The PanCareFollowUp project was initiated to improve their health and quality of life (QoL) by facilitating person-centred survivorship care. METHODS: The PanCareFollowUp consortium was established in 2018, consisting of 14 project partners from ten European countries, including survivor representatives. The consortium will develop two PanCareFollowUp Interventions, including a person-centred guideline-based model of care (Care Intervention) and eHealth lifestyle coaching (Lifestyle Intervention). Their development will be informed by several qualitative studies and systematic reviews on barriers and facilitators for implementation and needs and preferences of healthcare providers (HCPs) and survivors. Implementation of the PanCareFollowUp Care Intervention as usual care will be evaluated prospectively among 800 survivors from Belgium, Czech Republic, Italy and Sweden for survivor empowerment, detection of adverse health conditions, satisfaction among survivors and HCPs, cost-effectiveness and feasibility. The feasibility of the PanCareFollowUp Lifestyle Intervention will be evaluated in the Netherlands among 60 survivors. RESULTS: Replication manuals, allowing for replication of the PanCareFollowUp Care and Lifestyle Intervention, will be published and made freely available after the project. Moreover, results of the corresponding studies are expected within the next five years. CONCLUSIONS: The PanCareFollowUp project is a novel European collaboration aiming to improve the health and QoL of all survivors across Europe by developing and prospectively evaluating the person-centred PanCareFollowUp Care and Lifestyle Interventions.

Mental Health Among Parents of Children Aged <18 Years and Unpaid Caregivers of Adults During the COVID-19 Pandemic - United States, December 2020 and February-⁠March 2021.

Early during the COVID-19 pandemic, nearly two thirds of unpaid caregivers of adults reported adverse mental or behavioral health symptoms, compared with approximately one third of noncaregivers† (1). In addition, 27% of parents of children aged <18 years reported that their mental health had worsened during the pandemic (2). To examine mental health during the COVID-19 pandemic among U.S. adults on the basis of their classification as having a parenting role (i.e., unpaid persons caring for children and adolescents aged <18 years, referred to as children in this report) or being an unpaid caregiver of adults (i.e., persons caring for adults aged ≥18 years),§ CDC analyzed data from cross-sectional surveys that were administered during December 2020 and February-March 2021 for The COVID-19 Outbreak Public Evaluation (COPE) Initiative.¶ Respondents were categorized as parents only, caregivers of adults only, parents-caregivers (persons in both roles), or nonparents/noncaregivers (persons in neither role). Adjusted odds ratios (aORs) for any adverse mental health symptoms, particularly suicidal ideation, were higher among all respondents who were parents, caregivers of adults, or both compared with respondents who were nonparents/noncaregivers and were highest among persons in both roles (parents-caregivers) (any adverse mental health symptoms: aOR = 5.1, 95% confidence interval [CI] = 4.1-6.2; serious suicidal ideation: aOR = 8.2, 95% CI = 6.5-10.4). These findings highlight that parents and caregivers, especially those balancing roles both as parents and caregivers, experienced higher levels of adverse mental health symptoms during the COVID-19 pandemic than adults without these responsibilities. Caregivers who had someone to rely on for support had lower odds of experiencing any adverse mental health symptoms. Additional measures are needed to improve mental health among parents, caregivers, and parents-caregivers.

Psychological, sociocultural and economic coping strategies of mothers or female caregivers of children with a disability in Belu district, Indonesia.

Caring for children with a disability can cause a range of psychological and socioeconomic challenges for parents and caregivers, such as anxiety, depression, inability to find affordable and appropriate childcare, loss of income and expenses related to disability specific treatment. As part of a study exploring the impacts of childhood disability on mothers or female caregivers and families, and the copy strategies they used, this paper describes strategies employed by mothers or female caregivers to cope with challenges associated with childhood disability within their family in Belu district, Indonesia. A qualitative approach using one-on-one in-depth interviews was used to collect data from participants (n = 22) who were recruited using a combination of purposive and snowball sampling techniques. Interviews were recorded, transcribed verbatim and imported to NVivo 12 for analysis. A qualitative framework analysis was used to guide data analysis. The conceptual framework of coping strategies guided the conceptualisation and discussion of the findings. The findings showed that active psychological coping strategies, including cognitive or acceptance strategies, knowledge of both health condition and socio-academic related development of children with a disability, and family relationship and support, were used by the participants to cope with psychological challenges facing them. Self-reliance and religious/spiritual coping strategies were also utilised. Sociocultural strategies, such as social withdrawal or disengagement, professional support and culture-based support, were used by the participants to cope with social impacts, stigma, and discrimination associated with childhood disability. Participants also reported using financial strategies such as selling of family assets to cope with the economic challenges. The findings indicate the need for programs and interventions that address the needs of mothers and female caregivers and their families, to assist with effectively managing the significant challenges they face when caring for a child with a disability. Further studies are needed, with a larger number of participants and the inclusion of fathers or male caregivers, in order to better understand the broader coping experience of childhood disability impacts within families.

The economic burden of diarrhea in children under 5 years in Bangladesh.

BACKGROUND: Diarrhea is a leading cause of morbidity and mortality among under-five children in Bangladesh. Hospitalization for diarrhea can pose a significant burden on households and health systems. The aim of this study was to estimate the cost of illness due to diarrhea from the healthcare facility, caregiver, and societal perspectives in Bangladesh. METHOD: A cross-sectional study with an ingredient-based costing approach was conducted in 48 healthcare facilities in Bangladesh. In total, 899 caregivers of under-five children with diarrhea were interviewed face-to-face between August 2017 and May 2018, followed up over phone after 7-14 days of discharge, to capture all expenses and time costs related to the entire episode of diarrhea. RESULTS: The average cost per episode for caregivers was US$62, with $29 direct and $34 indirect costs. From the societal perspective, average cost per episode of diarrhea was $71. In 2018, an estimated $79 million of economic costs were incurred for treating diarrhea in Bangladesh. Using 10% of income as threshold, over 46% of interviewed households faced catastrophic expenditure from diarrheal disease. CONCLUSION: The economic costs incurred by caregivers for treating per-episode of diarrhea was around 4% of the annual national gross domestic product per-capita. Investment in vaccination can help to reduce the prevalence of diarrheal diseases and avert this public health burden.

A longitudinal evaluation of family caregivers' willingness to pay for an in-home nonpharmacologic intervention for people living with dementia: results from a randomized trial.

OBJECTIVE: To determine the willingness-to-pay (WTP) of family caregivers to learn care strategies for persons living with dementia (PLwD). DESIGN: Randomized clinical trial. SETTING: Community-dwelling PLwD and their caregivers (dyads) in Maryland and Washington, DC. PARTICIPANTS: 250 dyads. INTERVENTION: Tailored Activity Program (TAP) compared to attention control. TAP provides activities tailored to the PLwD and instructs caregivers in their use. MEASUREMENT: At baseline, 3 and 6 months, caregivers were asked their WTP per session for an 8-session 3-month in-home nonpharmacologic intervention to address behavioral symptoms and functional dependence. RESULTS: At baseline, 3 and 6 months, caregivers assigned to TAP were willing to pay $26.10/session (95%CI:$20.42, $33.00), $28.70 (95%CI:$19.73, $39.30), and $22.79 (95%CI: $16.64, $30.09), respectively; attention control caregivers were willing to pay $37.90/session (95%CI: $27.10, $52.02), $30.92 (95%CI: $23.44, $40.94), $27.44 (95%CI: $20.82, $35.34), respectively. The difference in baseline to 3 and 6 months change in WTP between TAP and the attention control was $9.58 (95%CI: -$5.00, $25.47) and $7.15 (95%CI: -$5.72, $21.81). The difference between TAP and attention control in change in the proportion of caregivers willing to pay something from baseline to 3 and 6 months was -12% (95%CI: -28%, -5%) and -7% (95%CI:-25%, -11%), respectively. The difference in change in WTP, among caregivers willing to pay something, between TAP and attention control from baseline to 3 and 6 months was $17.93 (95%CI: $0.22, $38.30) and $11.81 (95%CI: -$2.57, $28.17). CONCLUSIONS: Family caregivers are willing to pay more for an intervention immediately following participation in a program similar to which they were asked to value.

Psychosocial and economic impact of rheumatic diseases on caregivers of Mexican children.

BACKGROUND: Pediatric rheumatic disease (PRD) patients and their caregivers face a number of challenges, including the consequences of the PRD in patients and the impact on multiple dimensions of the caregivers' daily lives. The objective of this study is to measure the economic, psychological and social impact that PRD has on the caregivers of Mexican children. METHODS: This is a multicenter, cross-sectional study including primary caregivers of children and adolescents with PRD (JIA, JDM and JSLE) during April and November, 2019. A trained interviewer conducted the CAREGIVERS questionnaire, a specific, 28-item multidimensional tool validated to measure the impact on different dimensions of the lives of caregivers. Sociodemographic, clinical, and healthcare system data were collected for further analysis. RESULTS: Two hundred participants were recruited (women 169, 84.5%, aged 38 [IQR 33-44] years); 109 (54.5%) cared for patients with JIA, 28 (14%) JDM and 63 (31.5%) JSLE. The healthcare system was found to be determinant on the impact of the disease. The emotional impact was higher in all the participants, regardless of the specific diagnoses. The social dimension showed significant differences regarding PRD, healthcare system, time to reach the center, presence of disability, active disease, cutaneous and systemic manifestations, treatment and partner. Financial and work impacts were more frequent in those caring for JSLE and less so in those with a partner. Family relationships changed in 81 caregivers (25 [12.5%] worsened and 56 [28%] improved). No variables affecting spirituality were found. For caregivers without a partner, the social networks impact increased. CONCLUSION: The influence of sociodemographic factors can be devastating on families with children with a PRD. These data will help physicians to identify the areas with the greatest need for intervention to achieve comprehensive care for caregivers and their patients.