Family Financial Burden Research Articles

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.

Financial Burden Of Health Care, 2001–2004

Analysis of data from the Medical Expenditure Panel Survey (MEPS) shows that rising out-of-pocket expenses and stagnant incomes increased health spending's financial burden for families in 2001-2004, especially for the privately insured. High financial burdens among those with nongroup coverage increased by more than one-third. Despite evidence of increased cost sharing in private insurance plans, our analysis does not show that privately insured people paid a higher share of their total health care bill in 2004 compared to 2001. Financial burdens have increased to the point at which private insurance is no longer able to provide financial protection for an increasing number of families.

Family burden, quality of life and disability in obsessive compulsive disorder

Obsessive compulsive disorder (OCD) is a psychiatric disorder that often tends to run a chronic course. The lifetime prevalence of OCD is around 1-3%, which is twice as prevalent as schizophrenia and bipolar disorder. To asses the family burden, quality of life (QoL) and disability in patients suffering from at least moderately ill OCD and then to compare them with schizophrenia patients of comparable severity. We recruited 70 consecutive subjects (OCD=35, schizophrenia=35) who met study criteria between March 2005 and March 2006 from the psychiatric services of the National Institute of Mental Health and Neuro Sciences, Bangalore, India. The severity of illness was rated using the Clinical Global Impression-Severity (CGI-S). Instruments used in the current study were the Family Burden Schedule, the World Health Organization (WHO) QoL (Bref) and the WHO - Disability Assessment Schedule (DAS). The Fisher's exact test/chi-square test was used to compare categorical variables and the independent sample t test was used to analyze continuous variables. Analysis of covariance (ANCOVA) was used to compare the groups after controlling for potential confounding variables. Pearson's correlation was used for correlation analysis. Overall family burden, financial burden and disruption of family routines were significantly higher in schizophrenia patients compared to OCD although the groups did not differ with respect to other domains of family burden. On the WHO QoL, OCD patients were comparable to schizophrenia patients with respect to the psychological and social domains. On the WHO - DAS, both the groups were similar in all the domains except getting around. Severe OCD is associated with significant disability, poor QoL and high family burden, often comparable to schizophrenia. Therefore, there is an urgent need to increase the sensitivity among healthcare professionals to recognize and treat OCD.

Investigating the cost-effectiveness of videotelephone based support for newly diagnosed paediatric oncology patients and their families: design of a randomised controlled trial

BackgroundProviding ongoing family centred support is an integral part of childhood cancer care. For families living in regional and remote areas, opportunities to receive specialist support are limited by the availability of health care professionals and accessibility, which is often reduced due to distance, time, cost and transport. The primary aim of this work is to investigate the cost-effectiveness of videotelephony to support regional and remote families returning home for the first time with a child newly diagnosed with cancerMethods/designWe will recruit 162 paediatric oncology patients and their families to a single centre randomised controlled trial. Patients from regional and remote areas, classified by Accessibility/Remoteness Index of Australia (ARIA+) greater than 0.2, will be randomised to a videotelephone support intervention or a usual support control group. Metropolitan families (ARIA+ ≤ 0.2) will be recruited as an additional usual support control group. Families allocated to the videotelephone support intervention will have access to usual support plus education, communication, counselling and monitoring with specialist multidisciplinary team members via a videotelephone service for a 12-week period following first discharge home. Families in the usual support control group will receive standard care i.e., specialist multidisciplinary team members provide support either face-to-face during inpatient stays, outpatient clinic visits or home visits, or via telephone for families who live far away from the hospital. The primary outcome measure is parental health related quality of life as measured using the Medical Outcome Survey (MOS) Short Form SF-12 measured at baseline, 4 weeks, 8 weeks and 12 weeks. The secondary outcome measures are: parental informational and emotional support; parental perceived stress, parent reported patient quality of life and parent reported sibling quality of life, parental satisfaction with care, cost of providing improved support, health care utilisation and financial burden for families.DiscussionThis investigation will establish the feasibility, acceptability and cost-effectiveness of using videotelephony to improve the clinical and psychosocial support provided to regional and remote paediatric oncology patients and their families.

Insurance Coverage and Financial Burden for Families of Children with Special Health Care Needs

To examine the role of insurance coverage in protecting families of children with special health care needs (CSHCN) from the financial burden associated with care. Data from the 2001 National Survey of Children with Special Health Care Needs were analyzed. We built 2 multivariate regression models by using "work loss/cut back" and "experiencing financial problems" as the dependent variables, and insurance status as the primary independent variable of interest while adjusting for income, race/ethnicity, functional limitation/severity, and other sociodemographic predictors. Approximately 29.9% of CSHCN live in families where their condition led parents to report cutting back on work or stopping work completely. Families of 20.9% of CSHCN reported experiencing financial difficulties due to the child's condition. Insurance coverage significantly reduced the likelihood of financial problems for families at every income level. The proportion of families experiencing financial problems was reduced from 35.7% to 23.0% for the poor and 44.9% to 24.5% for low-income families with continuous insurance coverage (P < .01 for both comparisons). Similarly, the proportion of parents having to cut back or stop work was reduced from 42.8% to 35.9% for the poor (P < .05) and 43.5% to 33.9% for low-income families (P < .01). Continuous health insurance coverage provides protection from financial burden and hardship for families of CSHCN in all income groups. This evidence is supportive of policies designed to promote universal coverage for CSHCN. However, many poor and low-income families continue to experience work loss and financial problems despite insurance coverage. Hence, health insurance should not be viewed as a solution in itself, but instead as one element of a comprehensive strategy to provide financial safety for families with CSHCN.

Preferences for Mechanical Ventilation Among Survivors of Prolonged Mechanical Ventilation and Tracheostomy

Among survivors of prolonged mechanical ventilation, preferences for this treatment have rarely been explored. To elicit preferences of survivors of prolonged mechanical ventilation (>or=7 days) and factors influencing these preferences. A descriptive, cross-sectional survey design was used. Subjects were recruited from intensive care units in a tertiary care hospital and from long-term care facilities. Each subject (n = 30) was asked to reflect on the decision to use mechanical ventilation; rate current health, pain/discomfort in the intensive care unit and from mechanical ventilation, perceived family financial burden, and emotional/physical stress related to mechanical ventilation; identify changes that would influence preference for mechanical ventilation; and answer questions about quality of life, functional status, depressive symptoms, and communication. Most subjects (75.9%) would have chosen mechanical ventilation. Median days of mechanical ventilation and tracheostomy were greater for subjects who would have chosen mechanical ventilation (98.5 vs 70), as were median days of tracheostomy (102 vs 64). Patients who would not have chosen mechanical ventilation had more depressive symptoms and were more likely to be insured by Medicare. No other variables differed between groups. Patients who preferred mechanical ventilation would change their preference on the basis of their families' emotional/physical stress and financial burden. Patients who did not prefer mechanical ventilation would change their preference if the family financial burden and emotional/physical stress were reduced and current health improved. Most patients would have chosen mechanical ventilation. Survivors' preferences were influenced by their current health and families' financial burden and stress.

Financial Burden for Families of Children with Special Health Care Needs

We describe family finance-related burden experienced by families with children with special health care needs (CSHCN). The paper further seeks to describe correlates of family financial burden. We examined correlates of family finance-related burden using multivariate methods and the National Survey of CSHCN, a nationally representative cross-sectional survey of CSHCN. We also examined state-level correlations. Fully 40% of families with CSHCN, or 3,746,000 families nation-wide, experience financial burden related to their child's condition. Experiencing a finance-related problem is negatively associated with Maternal and Child Health Bureau (MCHB) indicators and positively associated with poor-child health status. States that better meet MCHB indicators generally have lower levels of family finance-related problems. Families with CSHCN have high levels of finance-related family problems. Development of appropriate systems of care appears to offer a mechanism for alleviating the financial burdens of these families.

Source of Maternal and Child Health Care as an Indicator of Ability to Pay for Family Planning

CONTEXT: Most developing countries cannot afford to provide free contraceptives to all women who choose to practice family planning. It is important to consider ways of determining which women need government subsidized services and which women can afford to pay for contraceptives. METHODS: Demographic and Health Survey data from eight developing countries are used to determine the proportions of women with children aged five or younger who practice contraception and who purchase private health care for themselves or their children. By assuming that these women can also afford to purchase contraceptives, we estimate how the private sources of contraceptives and the government’s family planning subsidies would be affected if all those who could afford to pay for their methods did so. RESULTS: In three countries—Indonesia, the Philippines and Zimbabwe—if all women who purchased private maternal and child health care were to purchase their oral contraceptives from commercial sources, the private-sector share of the pill market would increase by 22‐26%, while the government’s financial burden for family planning would decrease by 3‐7%. CONCLUSIONS: Encouraging women with the means to pay for private health care to purchase contraceptives from commercial sources could stimulate private sector participation, reduce the stress on overtaxed government family planning funding and allow substantially greater access to those in need of subsidized care. International Family Planning Perspectives, 2002, 28(3):167‐169

Mental Health Services for Alzheimer's Disease: Current Trends in Reimbursement and Public Policy, and the Future Under Managed Care

Behavioral or psychiatric symptoms in Alzheimer's disease are strongly related to the use of health care services and result in a significant emotional and financial burden for families. This paper is an overview of major trends in the organization and funding of mental health services for people with Alzheimer's disease, emphasizing specific public policy and reimbursement initiatives that have affected acute and long-term care. Recent trends reflecting increased federal scrutiny of Medicare-reimbursed services and the current and future challenges in providing mental health services to people with Alzheimer's disease within managed care and capitated health plans are also addressed.

Factors associated with National Council Licensure Examination-Registered Nurse success.

Identification of factors associated with National Council Licensure Examination-Registered Nurse (NCLEX-RN) success is critical at public colleges of nursing with diverse student populations. This issue was the purpose of this research study. A descriptive correlational research design was used. Seventy-nine generic senior students enrolled in an urban public university participated in the study. Several internal and external blocks to success were described by the students, including family responsibilities, emotional distress, fatigue, and financial and work burdens. Significant correlations were found between success in the NCLEX-RN and cumulative undergraduate nursing program grade point average, English as the primary language spoken at home, lack of family responsibilities or demands, lack of emotional distress, and sense of competency in critical thinking. Establishment of a comprehensive data base-including factors associated with success in the NCLEX-RN and programs of advisement, tutoring, and stress management as well as classes in study skills, test taking, and NCLEX preparation-are recommended for public colleges of nursing with diverse student populations.

KENTUCKIANA CHILDREN'S CENTER: A 40-YEAR HISTORY

ABSTRACT Kentuckiana Children's Center's 40-year history began with the vision of its founder, Dr. Lorraine M. Golden. The Center started as a one-half day a week pilot project in a local chiropractor's office. Dr. Golden's dream was to improve the lives of mentally and physically handicapped children, help alleviate their family's financial burdens and provide chiropractic care to those in need. This idea grew in 1957 with the lease of part of a deserted Army veterans hospital in south Louisville for a $1.00 lease. In the 1960's, staff members included volunteer chiropractors, conscientious objectors and Mennonite Church members. In 1981, after occupying the hospital complex for 20 years, Dr. Golden received the deed to the land. Her story of molding the vision into Kentuckiana is full of struggle and determination, one that is a cornerstone of chiropractic history.

Education and Employment in the Informal Sector A Review of Some Recent African Research

problem of increasing concern in many African countries.' This concern is a reflection of the dual effects of rapid expansion of primary education during the 1970os and of massive rural-urban migration which still continues up to the present day. However, even while primary schooling has become commonly available, in all countries in sub-Saharan Africa only relatively small numbers of students are able to continue on to secondary school. Not only are places far fewer in number but also secondary schooling usually involves a double financial burden for families - school fees and loss of a potential economic contribution from the child's labour. In view of these considerations, the reality for most African children in the I980s is that primary schooling will be terminal. Recognizing this reality, African education policymakers have started to put greater emphasis on teaching productive, work-related skills in primary schools. Attention has been focused on the vocationalization of the curriculum and on the teaching of skills believed to have immediate applicability and relevance in the world outside school. The general concept of the vocationalization of the primary school curriculum is certainly not a new one in the African context. The history of African education is replete with examples of the attempts of the former colonial powers to introduce vocational slants into the education offered to African children - and with the resistence strategies adopted by African parents and intellectuals who rejected this type of education for their children, regarding it as a thinly disguised attempt to ensure that Africans remained permanently entrenched in subservient economic and social roles. (See, for