Family Financial Burden Research Articles

Financial and employment impact of intellectual disability on families of children with autism.

Families of children with autism spectrum disorder (ASD) endure significant financial and employment burden because of their children's numerous needed services. The study objective is to describe additional impact on families of children with intellectual disability (ID) in addition to ASD. The study is a secondary data analysis of the 2009-2010 National Survey of Children with Special Health Care Needs. Children whose parents answered "yes" when asked whether their child had ASD or ID were classified as having ASD alone (unweighted n = 2,406), ID alone (unweighted n = 1,363), or both ASD/ID (unweighted n = 620). Bivariate and multivariate analyses compared study outcomes of family financial and caregiver burden using ASD as the reference group. All analyses were weighted using person-level estimates. Of children with ASD, 24% also had ID. More than half of caregivers of children with ASD/ID reported financial difficulty (52%) and having to stop work to care for their child (51%). Compared with ASD alone, caregivers of children with both ASD/ID were more likely to report financial difficulty (aOR 1.65, 95% CI 1.10-2.46), cutting work hours (aOR 1.43, 95% CI .98-2.08), and stop working (aOR 2.32, 95% CI 1.57-3.43). No differences were found between caregivers of children with ASD only and ID only. We conclude that having ID in addition to ASD may be associated with greater negative impact on family financial and employment burden. Recognition of ID in addition to ASD is important to tailor the clinical approach and sufficiently support families.

Understanding Differences in College Persistence: A Longitudinal Examination of Financial Circumstances, Family Obligations, and Discrimination in an Ethnically Diverse Sample

Ethnic and generational differences in motivation and achievement have been well-established. However, minimal research has examined the role of social factors on educational outcomes among individuals from diverse backgrounds. With a longitudinal sample of 408 Latino, Asian, and European-American students, we examine family, discrimination, and financial factors in 12th grade and two years later as predictors of persistence four years after high school, and as mediators of ethnic and generational differences in persistence. Results indicate that family obligations, discrimination, and financial burdens are associated with reduced rates of persistence, while high school GPA, SES, and financial aid are associated with higher rates of persistence. Ethnic differences in persistence are related to high school GPA and SES, as well as financial circumstances. Reducing ethnic disparities in college persistence should thus involve attention not only to academic factors, but also to family circumstances that may cause college attendance to be a hardship.

Patients' annual income adequacy, insurance premiums and out-of-pocket expenses related to heart failure care

ObjectivesTo (1) identify the amount patients spend for insurance premiums, co-payments, deductibles, and other out-of-pocket costs related to HF and chronic health care services and estimate their annual non-reimbursed and out-of-pocket costs; and (2) identify patients' concerns about nonreimbursed and out-of-pocket expenses. BackgroundHF is one of the most expensive illnesses for our society with multiple health services and financial burdens for families. MethodsMixed methods with quantitative questionnaires and qualitative interviews. ResultsPatients (N = 149) reported annual averages for non-reimbursed health services co-payments and out-of-pocket costs ranging from $3913 to $5829 depending on insurance coverage. Thirty one patients (21%) reported inadequate health coverage related to their non-reimbursed costs. ConclusionsNon-reimbursed costs related to HF care are substantial and vary depending on their insurance, health services use, and out-of-pocket costs. Patient referral to social services to assist with expenses could provide some relief from the burden of high HF-related costs.

Analyzing the Value Types and Factors That Influence Military Cadets in Taiwan to Determine the Appropriate Candidate

Previous studies have unanimously agreed that despite the challenges of postmodernism, militaries should not and cannot be governed using an occupational model. However, what the notion of the value type of a postmodern army is should be clarified. This study investigates the changing values of postmodern militaries caused by external economic factors. For this research, a questionnaire and long-term investigation method were adopted to collect 262 cadet samples from the Taiwanese military, navy, and air force. The results of a cluster analysis showed that the cadets primarily comprised 3 types, that is, the devotion (DE) type, socially competent (SC) type, and the comfortable (CO) type. This study shows that the socially competent type best satisfies the value demands of the military. In addition, the enlistment motivations of this type of cadet are generally to alleviate family financial burdens, non-economic-related reasons, self-actualization, and patriotism.

Burden on family carers and care-related financial strain at the end of life: a cross-national population-based study

Background: The rising number of deaths from cancer and other life-limiting illnesses is accompanied by a growing number of family carers who provide long-lasting care, including end-of-life care. This population-based epidemiological study aimed to describe and compare in four European countries the prevalence of and factors associated with physical or emotional overburden and difficulties in covering care-related costs among family carers of people at the end of life. Methods: A cross-national retrospective study was conducted via nationwide representative sentinel networks of general practitioners (GPs). Using a standardized form, GPs in Belgium, The Netherlands, Italy and Spain recorded information on the last 3 months of life of every deceased adult practice patient (1 January 2009–31 December 2010). Sudden deaths were excluded. Results: We studied 4466 deaths. GPs judged family carers of 28% (Belgium), 30% (The Netherlands), 35% (Spain) and 71% (Italy) of patients as physically/emotionally overburdened (P < 0.001). For 8% (Spain), 14% (Belgium), 36% (The Netherlands) and 43% (Italy) patients, GPs reported difficulties in covering care-related costs (P < 0.001). Patients <85 years of age (Belgium, Italy) had higher odds of having physically/emotionally overburdened family carers and financial burden. Death from non-malignant illness (vs. cancer) (Belgium and Italy) and dying at home compared with other locations (The Netherlands and Italy) were associated with higher odds of difficulties in covering care-related costs. Conclusion: In all countries studied, and particularly in Italy, GPs observed a considerable extent of physical/emotional overburden as well as difficulties in covering care-related costs among family carers of people at the end of life. Implications for health- and social care policies are discussed.

Arterial Ischemic Stroke in Children: Risk Factors and Etiologies

Stroke is increasingly recognized as a significant cause of morbidity and mortality in children, and as a financial burden for families and society. Recent studies have identified and confirmed presumptive risk factors, and have identified novel associations with childhood arterial ischemic stroke. A better understanding of risk factors for stroke in children, which differ from the atherosclerotic risk factors in adults, is the first step needed to improve strategies for stroke prevention and intervention, and ultimately minimize the physical, mental, and financial burden of arterial ischemic stroke. Here, we discuss recent advances in research for selected childhood stroke risk factors, highlighting the progress made in our understanding of etiologic mechanisms and pathophysiology, and address the future directions for acute and long-term treatment strategies for pediatric stroke.

The financial burden of unexpected hospitalizations for childhood cancer patients and their families.

267 Background: Complications of therapy, such as infection, pain, or dehydration, may cause financial stress for childhood cancer patients due to unexpected hospitalizations. Treatment for childhood cancer is typically provided at tertiary health care centers, requiring rural patients to travel long distances for care. We evaluated the perceived financial burden of unanticipated hospitalizations, insurance, and rurality on childhood cancer patients and their families. Methods: A single-site, cross-sectional survey of primary caretakers of childhood cancer patients was performed from July 2010-July 2012. Eligible patients were treated at a pediatric cancer hospital, diagnosed age ≤21 years and were ≤5 years from diagnosis (N=310). Financial burden was rated on a visual analog scale of 0-100. Multivariable linear regression models were used to calculate coefficients and 95% Confidence Intervals (CI) of financial burden by number of unexpected hospitalizations (0, 1-4, ≥5) and time since diagnosis. Results: The average age at diagnosis was 7.0 (SD 5.6) years. The most common diagnosis was leukemia (47.4%). The mean number of unexpected hospitalizations was 4.2 (SD 7.3). Patients did not differ on number of unexpected hospitalizations by current age, gender, race/ethnicity, or household income. In multivariable analyses, patients 1-5 years past diagnosis with ≥5 unexpected hospitalizations reported financial burden was 22.6 (95% CI 6.2-39.1, p=0.007) points higher than those with no hospitalization and 13.7 (95% CI 2.8-23.6 p=0.007) points higher than those with 1-4 hospitalizations. Patients &lt;1 year from diagnosis did not differ. While type of insurance (public vs. private) did not impact burden, rural patients reported 15.0 (95% CI 6.8-23.2, p&lt;0.001) points higher financial burden than urban patients. Conclusions: A high number of unexpected hospitalizations and rural residence were associated with greater financial burden for families of childhood cancer patients. Efforts to reduce unexpected admissions by managing side effects in outpatient visits, utilizing home health nurses and collaborating with local primary care physicians for remote patients could help ease the financial burden.

Impact of State Mental Health Parity Laws on Access to Autism Services

This study examined the effect of state mental health parity laws on family financial burden, satisfaction with health insurance, and receipt of needed mental health services for privately insured children ages three to 17 with autism spectrum disorder (ASD). Data came from the 2005-2006 wave of the National Survey of Children With Special Health Care Needs. An econometric approach with instrumental variables was used to control for the nonrandom selection of states according to their mental health parity laws. The study analyzed data for 949 youths with ASD and private health insurance. Six outcome variables were examined, including several measures of family financial burden, satisfaction with health insurance, and receipt of needed mental health services. Families of children needing mental health services and living in a state with a strict parity law had a 61% higher probability of reporting out-of-pocket spending >$1,000 compared with those not living in a strict parity state. Compared with families of children living in a strict parity state that did not specify ASD, those living in a strict parity state that specified ASD had a 92% higher probability of reporting unreasonable out-of-pocket spending. All other results were statistically insignificant. In contrast with previous research, this study did not find strong evidence that state mental health parity laws positively affected service access for children with ASD. Future research on the effect of autism insurance reform will provide a more precise test of the impact of insurance mandates on improving access to treatment services for children with ASD.

Medicare Part D is Associated With Reducing the Financial Burden of Health Care Services in Medicare Beneficiaries With Diagnosed Diabetes

Medicare Part D, implemented in 2006, provided coverage for prescription drugs to all Medicare beneficiaries. To examine the effect of Part D on the financial burden of persons with diagnosed diabetes. We conducted an interrupted time-series analysis using data from the 1996 to 2008 Medical Expenditure Panel Survey (11,178 persons with diabetes who were covered by Medicare, and 8953 persons aged 45-64 y with diabetes who were not eligible for Medicare coverage). We then compared changes in 4 outcomes: (1) annual individual out-of-pocket expenditure (OOPE) for prescription drugs; (2) annual individual total OOPE for all health care services; (3) annual total family OOPE for all health care services; and (4) percentage of persons with high family financial burden (OOPE ≥10% of income). For Medicare beneficiaries with diabetes, Part D was associated with a 28% ($530) decrease in individual annual OOPE for prescription drugs, a 23% ($560) reduction in individual OOPE for all health care, a 23% ($863) reduction in family OOPE for all health care, and a 24% reduction in the percentage of families with high financial burden in 2006. There were similar reductions in 2007 and 2008. By 2008, the percentage of Medicare beneficiaries with diabetes living in high financial burden families was 37% lower than it would have been had Part D not been in place. Introduction of Part D coverage was associated with a substantial reduction in the financial burden of Medicare beneficiaries with diabetes and their families.

State Insurance Parity Legislation for Autism Services and Family Financial Burden

We examined the association between states' legislative mandates that private insurance cover autism services and the health care-related financial burden reported by families of children with autism. Child and family data were drawn from the National Survey of Children with Special Health Care Needs (N = 2,082 children with autism). State policy characteristics were taken from public sources. The 3 outcomes were whether a family had any out-of-pocket health care expenditures during the past year for their child with autism, the expenditure amount, and expenditures as a proportion of family income. We modeled the association between states' autism service mandates and families' financial burden, adjusting for child-, family-, and state-level characteristics. Overall, 78% of families with a child with autism reported having any health care expenditures for their child for the prior 12 months. Among these families, 54% reported expenditures of more than $500, with 34% spending more than 3% of their income. Families living in states that enacted legislation mandating coverage of autism services were 28% less likely to report spending more than $500 for their children's health care costs, net of child and family characteristics. Families living in states that enacted parity legislation mandating coverage of autism services were 29% less likely to report spending more than $500 for their children's health care costs, net of child and family characteristics. This study offers preliminary evidence in support of advocates' arguments that requiring private insurers to cover autism services will reduce families' financial burdens associated with their children's health care expenses.

Changes in Pharmaceutical Treatment of Diabetes and Family Financial Burdens

Recent changes in diabetes treatment guidelines and the introduction of new, more expensive pharmaceuticals appear to increase the financial challenges for nonelderly adults with diabetes. The authors used Medical Expenditure Panel Survey data to examine changes in the prevalence of diabetes and comorbidities, diabetes treatment, financial burdens, and the relationship between high financial burdens and patient characteristics. From 1997-1998 to 2006-2007, the total number of nonelderly adults treated for diabetes nearly doubled, from 5.4 to 10.7 million, and the proportion of diabetes patients using multiple drugs to treat their condition increased significantly. About a fifth of diabetes patients spent 10% or more of their family income on health care, and about one in nine spent 20% or more of their family income on health care. In 2006-2007, diabetes patients who were older, female, in poor health, or lacked insurance were more likely than others to have high burdens.

State-level income inequality and family burden of US families raising children with special health care needs

Growing evidence supports the hypothesis that income inequality within a nation influences health outcomes net of the effect of any given household’s absolute income. We tested the hypothesis that state-level income inequality in the United States is associated with increased family burden for care and health-related expenditures for low-income families of children with special health care needs. We analyzed the 2005–06 wave of the National Survey of Children with Special Health Care Needs, a probability sample of approximately 750 children with special health care needs in each state and the District of Columbia in the US Our measure of state-level income inequality was the Gini coefficient. Dependent measures of family caregiving burden included whether the parent received help arranging or coordinating the child’s care and whether the parent stopped working due to the child’s health. Dependent measures of family financial burden included absolute burden (spending in past 12 months for child’s health care needs) and relative burden (spending as a proportion of total family income). After controlling for a host of child, family, and state factors, including family income and measures of the severity of a child’s impairments, state-level income inequality has a significant and independent association with family burden related to the health care of their children with special health care needs. Families of children with special health care needs living in states with greater levels of income inequality report higher rates of absolute and relative financial burden.

Healthcare-Related Financial Burden among Families in the U.S.: The Role of Childhood Activity Limitations and Income.

This study examined the impact of childhood activity limitations on family financial burden in the U.S. We used ten complete panels (1996-2006) of the Medical Expenditure Panel Survey (MEPS) to evaluate the burden of out-of-pocket healthcare expenditures for 17,857 families with children aged 0-17 years. Multivariate generalized linear models were used to examine the relationship between childhood activity limitation status and both absolute and relative financial burden. Families of children with limitations had higher absolute out-of-pocket healthcare expenditures than families of children without limitations ($594.36 higher; p<0.05), and were 54% more likely to experience relative burden (p<0.05). Substantial socioeconomic disparities in financial burden were observed. Policies are needed to enable these families to access appropriate and affordable healthcare services.

Survivors of the war in the Northern Kosovo: violence exposure, risk factors and public health effects of an ethnic conflict.

BackgroundThe aim of this population-based study was to assess the long-lasting effects of ethnic conflict on health and well-being (with a focus on injury and persistent pain) at family and community level. We have also investigated possible risk factors for victimisation during the conflict and factors contributing to healing.MethodsWe conducted a district-level cross-sectional cluster survey of 1,115 households with a population of 6,845. Interviews were carried out in Mitrovicë district in Northern Kosovo from September to October 2008, using standardised questionnaire to collect lifetime violence exposure, lifestyle factors and health information on individual and household.ResultsEthnic Albanians made up 95% of the sample population. Crude mortality and under-five mortality rate was not high in 2008. Over 90% of families had been exposed to at least two categories of violence and human rights violations, and 493 individuals from 341 families reported torture experiences. During the two weeks before the survey, 20% of individuals had suffered physical or mental pain. There were differences in pain complaints according to gender and age, and whether people had been injured within 12 months, had lifetime exposure to violence-related injury, or had been tortured. Patterns of social and political participation in a family could affect the proportion of family members complaining of pain. The proportion of family members with pain complaints was related to a decline in the household income (coef = 9.31, 95% CI = 6.16-12.46, P < 0.001) and the fact of borrowing money (coef = 6.11, 95% CI = 2.91-9.30, P < 0.001) because of an injured person in the household. Families that were affiliated with the Kosovo Liberation Army, or had participated in a protest before or during the war, were likely to be targeted by Serbian paramilitary and law enforcement agencies.ConclusionsMitrovicë district is currently characterised by a low level of violence, but the effects of ethnic conflict on health and well-being have not gone. The level of lifetime exposure to violence, the proportion of family members reporting pain and lifetime violence-related injury, and family's financial burden were found to be inter-correlated. The sample confined to one ethnic group in one district limits the generalizability of the findings.

Children with Special Health Care Needs: Impact of Health Care Expenditures on Family Financial Burden

Children with Special Health Care Needs: Impact of Health Care Expenditures on Family Financial Burden

Care Coordination for CSHCN: Associations With Family-Provider Relations and Family/Child Outcomes

To examine the association between receiving adequate care coordination (CC) with family-provider relations and family/child outcomes. We analyzed data from the 2005-2006 National Survey of Children With Special Health Care Needs. Eligible subjects were the 88% of families asked about experience with CC, service use, and communication. Respondents also reported on demographic characteristics, health status, family-provider relations, and family/child outcomes. Weighted, multivariate logistic regression models were constructed to assess independent associations of adequate CC with outcomes. Among families with children with special health care needs asked about CC, 68.2% reported receiving some type of CC help. Of these, 59.2% reported receiving adequate CC help, and 40.8% reported inadequate CC. Families that reported adequate compared with inadequate CC had increased odds of receiving family-centered care, experiencing partnerships with professionals, and satisfaction with services. They had decreased odds of having problems with referrals for specialty care, missing >6 school days because of illness (previous year), and visiting the emergency department more than twice in the previous 12 months (P < .001). Those who reported adequate compared with inadequate CC had decreased odds of the following: more than $500/y of out-of-pocket expenses, family financial burden, spending more than 4 hours/week coordinating care, and stopping/reducing work hours. Parental report of adequate CC was associated with favorable family-provider relations and family/child outcomes. Additional efforts are needed to discern which aspects of CC are most beneficial and for which subgroups of children with special health care needs.

Prenatal Diagnosis and Abortion for Congenital Abnormalities: Is It Ethical to Provide One Without the Other?

This target article considers the ethical implications of providing prenatal diagnosis (PND) and antenatal screening services to detect fetal abnormalities in jurisdictions that prohibit abortion for these conditions. This unusual health policy context is common in the Latin American region. Congenital conditions are often untreated or under-treated in developing countries due to limited health resources, leading many women/couples to prefer termination of affected pregnancies. Three potential harms derive from the provision of PND in the absence of legal and safe abortion for these conditions: psychological distress, unjust distribution of burdens between socio-economic classes, and financial burdens for families and society. We present Iran as a comparative case study where recognition of these ethical issues has led to the liberalization of abortion laws for fetuses with thalassemia. We argue that physicians, geneticists and policymakers have an ethical and professional duty of care to advocate for change in order to ameliorate these harms.

Children with Special Health Care Needs: Impact of Health Care Expenditures on Family Financial Burden

We investigated the relationship between health care expenditures for Special Health Care Needs (SHCN) children and family perception of financial burden. Using 2005/2006 National Survey of Children with Special Health Care Needs data, a multivariate logistic regression model was used to estimate the relationship between the SHCN child's health care expenditure and perceived financial burden, while controlling for family and child characteristics. Our analysis suggests that health care expenditures for a SHCN child of $250 and more are associated with family perception of financial burden. In addition, families with lower socioeconomic status also perceived financial burden at lower level of expenditures. Members of the health care team who treat children with SHCN have an important role in understanding and assessing family financial burden as part of the care delivery to the child and the family. Our study reinforces the need to treat the whole family as the unit of care, especially when caring for children with special health care needs.

Supporting families in the context of adult traumatic brain injury

Families are fundamental to the wellbeing, quality of life and functional and social outcomes of individuals who sustain traumatic brain injury (TBI). However, the family is often vulnerable and at risk from the challenge of supporting an individual who has been left with long-term neurological disability. Considering the young population often affected, the resulting conditions can have significant emotional and financial burden for families and service providing for their long-term needs. The National Service Framework for Long-term Conditions acknowledges that the whole family is affected by neurological disability and it suggests that a ‘whole-family’ approach to managing TBI may be useful. This paper will argue that both family systems theory and family-centred care are frameworks that may be helpful in achieving the ‘whole-family’ approach in practice. However, future research is needed that will assess the efficacy of these and other approaches so that health-care services know the true value of any such intervention.

Financial Burden in Families of Children With Special Health Care Needs: Variability Among States

The main objective of this study was to examine variability among states for 3 indicators of the family financial burden related to caring for children with special health care needs. Data were from a 2001 national survey of households with children (<18 years of age) with special health care needs, with a representative sample from each state. The outcomes examined included whether a family had any out-of-pocket expenditures during the previous 12 months related to the child's special health care needs, the amount of expenditure (absolute burden), and the amount of expenditure per $1000 of family income (relative burden). We used multilevel regression to examine state-level variability in financial burden, controlling for individual-level factors. We also examined the association between state median family income and state mean financial burden. Overall, 82.5% of families reported expenditures of more than $0. Among these families, the mean unadjusted absolute burden was $752 and the relative burden was $19.6 per $1000. Adjusted state means ranged from $562 to $972 for absolute burden and from $14.5 to $32.3 per $1000 for relative burden. Families living in states with higher median family incomes had lower financial burdens across all 3 measures. Families that are similar with respect to household demographic characteristics and the nature of their children's special health care needs have different out-of-pocket health expenditures depending on the state in which they live. Documenting and understanding this variability moves the field closer to the goal of establishing evidence-based, state policy recommendations aimed at reducing the financial burden of these vulnerable families.