Unmet service needs of families of young children with chronic illnesses and disabilities (original) (raw)
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Unmet Health Care Needs and Impact on Families With Children With Disabilities in Germany
Ambulatory Pediatrics, 2003
Objectives.-We sought to determine the independent effect of unmet health needs on family burden, in addition to the effects of functional impairment and parental care load, in children and adolescents with disabilities. Methods.-We conducted a cross-sectional survey of 273 families with children with disabilities using ambulatory services at an academic children's hospital in Germany. We measured family burden using a translated version of the Impact on Family Scale (FABEL). Independent variables were unmet health needs in 4 areas (medical care, care coordination, health education, and psychosocial services), level of functional disability, and nursing care load at home. Control variables included the child's age and gender, maternal employment status, and parental educational attainment. Results.-Most children had complex health conditions such as brain injury, congenital malformations, metabolic disease, myopathies, and brain tumors. Nearly half of families (44.6%) received home nursing cash benefits, indicating high care load. Parents reported most unmet needs in the areas of psychosocial counseling (17.2%) and care coordination (8.1%). After controlling for sociodemographic factors, unmet health needs predicted family burden independently of type (mental retardation or mobility impairment) and number of disabilities and nursing care load. Although only a few parents reported lack of medical services, this factor also contributed significantly to family burden. Multivariate analysis with these variables explained 45% of the variance in impact on the family. Conclusions.-Addressing unmet health needs may alleviate the impact of caring for a child with a disability. Further studies are needed to show more definitively that families can benefit from integrated services including psychosocial counseling.
Physical therapy, 2016
Pediatric rehabilitation therapy services and mobility aids have an important role in the health of children with special health care needs, and the Affordable Care Act (ACA) may increase coverage for these needs. Identifying the prevalence of and factors associated with therapy and mobility aid needs and unmet needs prior to the full implementation of the ACA will be useful for future evaluation of its impact. The purpose of this study was to identify the prevalence of and factors associated with caregiver perceived needs and unmet needs for therapy or mobility aids among children with special health care needs living in the United States. A cross-sectional, descriptive, multivariate analysis was conducted. The 2009-2010 National Survey of Children With Special Health Care Needs was used to identify a nationally representative sample of children with special health care needs with needs for therapy (weighted n=2,603,605) or mobility aids (weighted n=437,971). Odds of having unmet n...
Unmet Need among Children with Special Health Care Needs in Massachusetts
Maternal and Child Health Journal, 2008
Objectives We partnered with a Massachusetts family workgroup to analyze state level data that would be most useful to consumers and advocates in Massachusetts. Methods Massachusetts' and US data from the 2001 National Survey of Children with Special Health Care Needs (NSCSHCN) were analyzed. We examined types of need and prevalence of unmet need for all CSHCN and for more severely affected CSHCN. We also correlated unmet need to child and family characteristics using multivariate logistic regression. Results In Massachusetts, 17% of CSHCN and 37% of children more severely affected did not receive needed care. CSHCN who were uninsured anytime during the previous year were nearly 5 times more likely to experience an unmet need (OR = 4.95, CI: 1.69-14.51). Children with more functional limitations (OR = 3.15; CI: 1.59-6.24) and unstable health care needs (OR = 3.26; CI: 1.33-8.00) were also more likely to experience an unmet need. Receiving coordinated care in a medical home (OR = 0.46; CI: 0.23-0.90) was associated with reduced reports of unmet need. Conclusions With input from families of CSHCN, researchers can direct their analyses to answering the questions and concerns most meaningful to families. We estimate that 1 in 6 CSHCN in Massachusetts did not receive needed care, with more than 1 in 3 CSHCN with a more severe condition experiencing an unmet need. Enabling factors were predictors of unmet need suggesting solutions such as expanding insurance coverage and improving services systems for CSHCN.
Prevalence and Characteristics of Children With Special Health Care Needs
Archives of Pediatrics and Adolescent Medicine, 2004
Background: Children with special health care needs (SHCNs) are an important population from health care services, economic, and policy perspectives. However, until recently, no national data on their prevalence and health care service needs that use a commonly accepted definition have existed.
Journal of Health, Medicine and Nursing, 2020
Aim: Health care is lacking for some level of mental disability for various reasons. The aim of this study was to examine health care utilization by individuals with severe disabilities applied to the health committee of a university hospital and to examine the factors that determine caregiver satisfaction by assessing their burden of care, quality of life, and level of burnout. Methods: Of the 840 disabled individuals who applied to Recep Tayyip Erdogan University Faculty of Medicine Training and Research Hospital, Rize, Turkey between January 2016 and 2019, 48 with severe disability caregivers were included in the study. Their sociodemographic information, level of health care, and caregiver satisfaction were analyzed using sociodemographic data forms. The Zarit Caregiver Burden Scale, Maslach Burnout Inventory, and Family Quality of Life Scale were used to assess the caregiver data. Results: More than half of the 48 children with severe disabilities were male (52.1%).Disabled fem...
Pediatrics, 2009
Approximately 1 of every 7 children younger than 18 years in the United States, or ϳ10.2 million children, can be classified as having special health care needs. 1 Children with special health care needs (CSHCN) are defined as those children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally. 2 Besides any limitations from their conditions, they are at greater risk for unmet health care needs, 3 poorer dental health, 4 and behavioral problems. 5 Expenditures for their care are ϳ3 times higher than for other children, accounting for ϳ42% of all medical care costs for children. 6 Until the 2001 National Survey of Children With Special Health Care Needs (NS-CSHCN), little was known about this population. The 2001 NS-CSHCN was the first large-scale study devoted to assessing the health and health care experiences of this population. This study was also one of the first surveys of children in which it was possible to derive state-level estimates.
American Journal of Public Health, 2011
The US Department of Health and Human Services called for comprehensive systems of services for children with special health care needs in its Healthy People 2000 and 2010 health care objectives for the nation. We report on the proportion of children with special health care needs receiving care in high-quality systems of services measured by attainment of 6 essential system elements, or quality indicators, generated from a survey of 40 723 families of children with special health care needs in 2005 to 2006. Only 17.7% of children with special health care needs received services in a high-quality service system that met all 6 quality indicators in 2005–2006. Therefore, much more work lies ahead to meet the national Healthy People objective for these children.
Journal of Pediatric Health Care, 2006
Objective: To evaluate the perceptions of families of children with developmental disabilities regarding their primary care physicians and to determine if differences exist for different conditions. Methods: Mailed survey to families of children who had autism, physical disabilities (cerebral palsy or spina bifida) and mental retardation that included the Multidimensional Assessment of Parental Satisfaction for Children with Special Needs. Results: One hundred twenty-one families responded. Families rated physicians highest on their ability to keep up with new aspects of care and on their sensitivity to the needs of children. Parents had the lowest ratings for the primary care physicians' ability to put them in touch with other parents, understanding of the impact of the child's condition on the family, ability to answer questions about the child's condition, and information and guidance for prevention. Physicians' knowledge about complementary and alternative medicine and their qualifications to manage developmental disabilities ranked worse than neutral. Families with a child with autism had more spontaneous negative comments and rated their primary care physicians lower on several aspects of care. They requested more information on complementary and alternative medicine and more support in the community. Discussion: Families of children with developmental disabilities demonstrate dissatisfaction with several aspects of health care that can serve as areas for intervention by their health care providers. Families of children with autism in particular articulate dissatisfaction and voice unmet needs.
Family-Provided Health Care for Children With Special Health Care Needs
Pediatrics, 2017
Many children with special health care needs (CSHCN) receive health care at home from family members, but the extent of this care is poorly quantified. This study's goals were to create a profile of CSHCN who receive family-provided health care and to quantify the extent of such care. We analyzed data from the 2009-2010 National Survey of Children with Special Health Care Needs, a nationally representative sample of 40 242 parents/guardians of CSHCN. Outcomes included sociodemographic characteristics of CSHCN and their households, time spent by family members providing health care at home to CSHCN, and the total economic cost of such care. Caregiving hours were assessed at (1) the cost of hiring an alternative caregiver (the "replacement cost" approach), and (2) caregiver wages (the "foregone earnings" approach). Approximately 5.6 million US CSHCN received 1.5 billion hours annually of family-provided health care. Replacement with a home health aide would hav...