Children's Special Health Care Research Articles

Children's Special Health Care Needs and Caregivers' Well-Being During the COVID-19 Pandemic.

Caregivers of children with special health care needs (SHCN) report worse self-rated health when compared with caregivers of children without SHCN and have experienced significant stress during the COVID-19 pandemic. We sought to determine whether COVID-19 pandemic-era declines in well-being among caregivers of children with SHCN were steeper than among caregivers of children without SHCN. We used 2020 to 2021 (pandemic-era, n = 89,560) and 2018 to 2019 (pre-pandemic, n = 57,927) data from the National Survey of Children's Health. Caregiver-reported physical and mental health outcomes were analyzed using multivariable ordinal logistic regression. The pandemic era was associated with 26% higher odds of reporting worse mental health among caregivers of children with SHCN (95% confidence interval [CI]: +16%, +38%), and 20% higher odds of reporting worse mental health among caregivers of children without SHCN (95% CI: +15%, +26%). The magnitudes of these changes were not significantly different from one another (P = .341). Although caregivers of children with SHCN faced significant burdens and increased stress during the pandemic, decline in self-rated mental health among this group was similar to the trend seen among caregivers of children without SHCN.

Stress among mothers of children with Autism Spectrum Disorder in comparison to children with & without special health care needs.

Parenting a child with special health care needs (SHCN) is often stressful. This study aimed to measure and compare stress among mothers of children with (a) Autism Spectrum Disorder (ASD) - ASD group, (b) Developmental delay without ASD group, (c) SHCN without developmental delay group, and (d) Typically developing group. To assess factors associated with maternal stress in children with developmental disorders. A cross-sectional analytical study was performed with children aged 2-12 years and their mothers. The study population was classified into four groups as defined above help of detailed history, developmental & behavioral assessments, psychological assessments, and Child Special Health Care Needs Screener (CSHCN). Parental Stress Scale (PSS) Questionnaire was administered. The main outcome measurement was the PSS and various factors affecting it. The mothers of the ASD group reported a high stress score (50.4±11.4) compared to SHCN without developmental delay group (38.2±8.8) and the Typically developing group (22.3±3.3) (p < 0.05) and higher but not significant stress than Developmental delay without ASD group (45.3±9.6, p > 0.05). Maladaptive behavioral issues and irregular interventions were the factors contributing to higher parental stress in the ASD group (p < 0.05). A moderate positive correlation was observed in rewarding and challenging scores of PSS among mothers of the ASD group, Developmental delay without ASD group, and SHCN without developmental delay group. Mothers of the ASD group perceived higher stress as compared to SHCN without developmental delay group and Typically developing group. Evaluation of stress and stressors is crucial for holistic management of ASD.

Association between children's health-related quality of life, healthcare costs and socioeconomic position: Results from a longitudinal Australian-based study

BackgroundEquity in healthcare service access and use are national goals and principal indicators of health system performance. Whilst it is important to understand how healthcare costs, socioeconomic position (SEP), and children's well-being are associated, limited literature explores how these covary. AimsTo explore the associations between families' SEP and (1) children's health-related quality of life (HRQoL) from 4 to 13 years; and (2) healthcare costs from 0 to 13 years; as well as (3) contributing factors that influence children's HRQoL and healthcare costs. MethodsData were drawn from the Longitudinal Study of Australian Children (LSAC). We used the parent-reported Pediatric Quality of Life Inventory 4.0 to measure children's HRQoL from 4 to 13 years. Healthcare costs to government from 0 to 13 years were measured using the government administrative data (Medicare) which includes records of both medical and pharmaceutical service utilisation. We used a composite of income, parental education, and occupation to measure SEP. We used linear and mixed effects modelling to explore associations between families' SEP and children's HRQoL or government healthcare costs, including the effects of predictors for these associations. Analyses were weighted and accounted for the survey design. ResultsCompared to children from high SEP families, those from low SEP families had lower HRQoL (from age 6–13 years, p = 0.001) and their families incurred higher government healthcare costs (from birth to 13 years). This association was confirmed using the mixed effects model (p = 0.054). Child special healthcare needs, being a single-parent or having parental stress were related to poorer children's HRQoL and higher government healthcare costs. Living in regional and remote areas was related to lower government healthcare costs. ConclusionUp to 13 years of age, children with low SEP used more health services but had lower HRQoL than those from high SEP families. These findings highlight a need to support children from low SEP families to improve their health and wellbeing.

Therapeutic itinerary of children with special health care needs: analysis guided by care systems.

To understand the therapeutic itinerary taken by families in search of attention to their child's special health care needs in a Brazilian border town. Qualitative research based on dialectical hermeneutics and on the Health Care Systems model. Interviews and Talking Maps (Dynamics of Creativity and Sensitivity) were carried out with 19 caregivers of children with special health care needs, attended at care institutions in Foz do Iguaçu, Paraná, in 2020. For data analysis, thematic analysis was used. The fragilities of the Health Care System were highlighted, permeated by: difficulties in accessing the diagnosis and consultations; overload for care; (dis)organization of the care itinerary; and deconstruction of the bond, due to failures in communication and reception. Conclusion: The deconstruction of the therapeutic itinerary of children with special health care needs involved, above all, the professional context in the Health Care System, leading to the search for care in private services and in care institutions.

Food insufficiency and children with special healthcare needs.

The purpose of this study was to examine the prevalence of food insufficiency, a more severe form of food insecurity, across levels of special healthcare needs among a nationally representative sample of children in the United States. The study also investigates whether medical home access serves as a possible protective mechanism against food hardship. The study involves analysis of nationally representative cross-sectional data. The data used are the 2016 National Survey of Children's Health, a cross-sectional nationally representative sample of the US children (N=48,709). Descriptive analyses and logistic regression analysis are used to estimate food insufficiency and its correlates by complexity of children's special healthcare needs. Analysis showed that children with more complex special healthcare needs experienced roughly twice the rate of food insufficiency compared with children with no special healthcare needs or children with less complex healthcare needs. Multivariate analysis indicated that children with more complex healthcare needs face an increased risk of food insufficiency net of demographic and economic characteristics. Interaction models revealed that medical home access protects children with medical complexity from food insufficiency. These findings document significantly elevated risk of food insufficiency among families with a child facing more complex special healthcare needs. Interventions in healthcare settings could include referrals to resources already in place to combat hunger such as food bank agencies and other resources that might help at-risk families obtain assistance through programs such as the Supplemental Nutrition Assistance Program and Women, Infants, and Children.

Pneumococcal Vaccination Rates in Children With Sickle Cell Disease

Sickle cell disease (SCD) confers an increased risk of invasive pneumococcal disease, especially among young children. Pneumococcal vaccination decreases this risk, but the completion rate of age-appropriate vaccinations is not well defined in SCD. The goal of this study was to assess whether pneumococcal vaccines are administered to high-risk children with SCD according to recommended vaccine schedules. A case-control design was used to conduct this study. Administrative data were obtained on Michigan Medicaid or Children's Special Health Care Services programs enrollees. In addition, Michigan Newborn Screening and Michigan Care Improvement Registry records were used to confirm diagnosis and vaccine administration. This study compared pneumococcal vaccination rates in a cohort of 179 children with SCD with 537 age-matched non-SCD controls (1:3) enrolled in the Michigan Medicaid Program between 2001 and 2008. Study subjects were born in the state of Michigan between 2001 and 2005. The main outcome measure was the proportion of children defined as up to date for pneumococcal vaccines at defined milestone ages. Children with SCD had significantly higher vaccination rates than controls, yet these values were much lower than state and national immunization survey rates. Barriers to completing age-appropriate recommended pneumococcal immunizations should be identified and addressed to further reduce invasive pneumococcal disease in this high-risk patient population.

The Impact of a Child's Special Health Care Needs on Maternal Work Participation during Early Motherhood

Many women temporarily reduce work hours or stop working when caring for small children. However, mothers of children with special health care needs may face particular challenges balancing childrearing responsibilities and employment demands. This study examines how the work participation among mothers of children with special health care needs compares with that of mothers in general during early motherhood, focusing in particular on the extent of the child's additional health care needs. By linkage of the population-based Norwegian Mother and Child Cohort Study with national registers on employment, child health care needs, and social background factors, 41,255 mothers employed prior to childbirth were followed until child age 3 years to investigate associations between the child's care needs and mother's dropping out of employment. In total, 16.3% of the formerly employed mothers were no longer employed at child age 3 years. Mothers of children with mild care needs did not differ from mothers in general, whereas mothers of children with moderate [Risk Ratio (RR) 1.45; 95% confidence interval (CI) 1.17, 1.80] and severe care needs [RR 2.19; 95% CI 1.67, 2.87] were at substantial risk of not being employed at follow-up. The impact of the child's health care needs remained strong also after adjusting for several factors associated with employment in general. Extensive childhood health care needs are associated with reduced short-term employment prospects and remain a substantial influence on mothers' work participation during early motherhood, irrespective of other important characteristics associated with maternal employment.

Preadoption adversities and postadoption mediators of mental health and school outcomes among international, foster, and private adoptees in the United States.

Adopted children are a heterogeneous group, varying along numerous factors, including type of adoption (international, foster, private), length of exposure to preadoption adversities as indexed by age of adoption, history of preadoption maltreatment, and prenatal substance exposure. Yet, we know little about how these adversity factors are mediated by quality of postadoption parent-child relationships and/or the presence of special health care needs to produce specific child outcomes across different groups of U.S. adopted children. This study uses structural equation modeling to analyze cross-sectional data from the National Survey of Adoptive Parents to investigate differences in outcomes among three groups of U.S. adopted children: international, foster, and private. SEM results indicate that compared with privately adopted children, (a) children adopted from the foster care system were more likely to be identified with special health care needs, and (b) internationally adopted children showed on average poorer school performance as indexed by math and reading. Analyses yielded both direct and indirect paths between preadoption adversities and child outcomes, with the majority of associations mediated or partially mediated by quality of parent-child relationships and/or special health care needs status. The results of these analyses highlight the heterogeneity among different groups of adopted children within the United States and also underline the important mediating roles that the quality of parent-child relationship and children's special health care needs status have on adopted children's selected mental health and academic outcomes.

Using Medicaid Claims to Identify Children With Asthma

To assess the accuracy of using administrative data from state-managed programs to identify children with asthma in a statewide immunization information system. We wished to understand the degree to which alternative asthma case definitions applied to administrative data influence the accuracy of cases identified in an immunization information system. Children aged 2 to 18 years were sequentially classified into 3-case definition groups on the basis of Michigan Department of Community Health administrative data (2005-2006): (1) children with a Children's Special Health Care Services (CSHCS) Program qualifying diagnosis of asthma (CSHCS cases); (2) those having 1 or more asthma medication claims (Rx cases); or (3) those without asthma medications having 1 or more health services claim reporting an asthma diagnosis code (Dx cases). Children were randomly selected from each asthma case definition group; parents were invited to participate in a telephone interview to document physician diagnosis of asthma, symptoms, activity limitations, medications, and asthma health services use. The positive predictive value of parent report of a physician diagnosis of asthma; asthma severity, based on National Asthma Education and Prevention Program criteria. : Of 440 completed interviews, 89% of parents confirmed the child's high-risk status, reporting physician diagnosis of asthma (83%), wheezy-cough (5%), or reactive airway disease (1%). The positive predictive value varied for CSHCS cases (100%), Rx cases (91%) and Dx cases (73%, P < .0001). Although reported asthma severity levels were similar among CSHCS and Rx cases (P = .9100), asthma severity was lower among Dx cases (P = .0218). Medicaid administrative data can be used to accurately identify children with asthma and represents a feasible approach for Medicaid programs and health plans to identify priority groups for targeted influenza vaccination reminders.

Mind the Gap: Gender Differences in Child Special Health Care Needs

The gendered nature of special health care needs in childhood is an important yet understudied area. Although gendered differences in the prevalence of special health care needs have been documented, there is less knowledge about the factors which contribute to those differences. Two research questions guide this inquiry. First, is the gender gap consistent across child special health care need indicators? Second, to what extent is the gender gap in special health care needs driven by behavioral conditions? We use multiple indicators from the U.S. National Survey of Children's Health to expand our understanding about the dynamic relationship between gender and childhood health. There are clear gender differences in the prevalence of special health care needs. Boys are more likely than girls to have special health care needs overall and on the five separate components examined (medication, more care than typical, limitations, special therapies, and educational or behavioral problem). This gender gap is dynamic and varies by indicator; while behavioral conditions play a role, it remains even after controlling for behavioral conditions. The reasons for the gender differences appear to be both biological and social but much remains unknown about this pattern.

A Call to Action for Social Work: Minimizing Financial Hardship for Families of Children with Special Health Care Needs

The social and economic burden of long-term illness and chronic conditions is not equitably distributed: Most people have moderate health care needs, and the personal cost of meeting these needs is correspondingly affordable. For a minority of the population, the reverse is also true; for example, research has affirmed the association between poverty and disability (Emerson & Hatton, 2008; Lustig & Strauser, 2007; U.S. Census Bureau, 2002). Among families caring for children with disabilities (that is, those with functional limitations in one or more domains), the social and economic burden of the child's special health care needs is significant (Bauman, Silver, & Stein, 2006; Boyle, Decoufle, & Yearginallsopp, 1994; Meyers, Lukemeyer, & Smeeding, 1998; Parish & Cloud, 2006; Parish, Cloud, Huh, 8: Henning, 2005; Robbins, Dollard, Armstrong, Kutash, & Vergon, 2008). Social work has an important role to play in promoting social and economic justice for children with special health care needs (CSHCN) and their families. In this National Health Line, we present a call to action for social workers and identify specific strategies that the profession can encourage at the policy and practice levels to promote social and economic justice for CSHCN and their families. The relationship between poverty and disability is complex; there is ample evidence that social risk factors, including low income, negatively affect children's health. Family poverty places a child at risk for adverse life experience resulting from environmental factors such as hunger and poor housing stock, factors that negatively affect multiple outcomes, including health (Bauman et al., 2006). Children living in poor households are more likely to have health problems, including chronic conditions and mental health disorders (Bauman et al., 2006; Ganz & Tendulkar, 2006; Parish et al., 2005; Robbins et al., 2008). The elevated prevalence of childhood disability among poor children supports the view that poverty and disability are linked (Fujiura & Yamaki, 2000; Perrin et al., 2007). Of U.S. households raising children with special health care needs, 41.2 percent have family income at or below 199 percent of the federal poverty level, according to the National Survey of Children with Special Health Care Needs (Child and Adolescent Health Measurement Initiative, n.d.). The causal associations between childhood disability, poverty, and family financial hardship are complex and multifactorial. For example, one factor that affects family financial hardship is the effect that a child's disability has on a parent's ability to work. Families of children with disabilities report higher out-of-pocket expenditures and reduced maternal employment compared with other families (Lukemeyer, Meyers, & Smeeding, 2000). As additional research is conducted to explicate these causal pathways, policy and practice solutions are urgently needed to assist families who are currently caught in the downward cycle of cumulative disadvantage over the life course (Kasper et al., 2008). The financial impact of raising a child with a special health care need manifests in three domains: higher health care costs, higher routine expenses, and loss of employment income. Effective solutions to these three general problem areas must encompass universal access to comprehensive coverage; this coverage must provide an adequate range and depth of health care benefits for children with chronic illness or disability and flexible financing for family supports. With these mechanisms in place, all three pathways to financial hardship--higher health care costs, higher routine expenses, and loss of employment income--can be circumvented. Although health reform is becoming a reality at the national level, the policy initiatives that result in improvements to the current system will still likely be implemented through existing state systems, at least in the foreseeable future. …

Disability beyond borders: New approaches to understanding children's special health care needs and maternal mental health

Disability beyond borders: New approaches to understanding children's special health care needs and maternal mental health

Do Children in Rural Areas Still Have Different Access to Health Care? Results from a Statewide Survey of Oregon's Food Stamp Population

To determine if rural residence is independently associated with different access to health care services for children eligible for public health insurance. We conducted a mail-return survey of 10,175 families randomly selected from Oregon's food stamp population (46% rural and 54% urban). With a response rate of 31%, we used a raking ratio estimation process to weight results back to the overall food stamp population. We examined associations between rural residence and access to health care (adjusting for child's age, child's race/ethnicity, household income, parental employment, and parental and child's insurance type). A second logistic regression model controlled for child's special health care needs. Compared with urban children (reference = 1.00), rural children were more likely to have unmet medical care needs (odds ratio [OR] 1.48, 95% confidence interval [CI] 1.07-2.04), problems getting dental care (OR 1.36, 95% CI 1.03-1.79), and at least one emergency department visit in the past year (OR 1.42, 95% CI 1.10-1.81). After adjusting for special health care needs (more prevalent among rural children), there was no rural-urban difference in unmet medical needs, but physician visits were more likely among rural children. There were no statistically significant differences in unmet prescription needs, delayed urgent care, or having a usual source of care. These findings suggest that access disparities between rural and urban low-income children persist, even after adjusting for health insurance. Coupled with continued expansions in children's health insurance coverage, targeted policy interventions are needed to ensure the availability of health care services for children in rural areas, especially those with special needs.

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.

Use of emergency medical services by children with special health care needs

Objective. This study describes emergency medical services (EMS) responses for children with special health care needs (CSHCN) in an urban area over a one-year period. Methods. A prospective surveillance system was established to identify EMS responses for children, 21 years of age or younger, with a congenital or acquired condition or a chronic physical or mental illness. Responses related to the special health care needs of the child were compared with unrelated responses. Results. During a one-year period, 924 responses were identified. Fewer than half of the responses were related to the child's special health care need. Younger children were significantly more likely to have a response related to their special needs than older children. Among related responses, seizure disorder was the most common diagnosis, while asthma was more common for unrelated responses. Almost 58% of the responses resulted in transport of the child to a hospital. Conclusions. Emergency medical services responses related to a child's special health care needs differ from unrelated responses. The most common special health care needs of children did not require treatment beyond the prehospital care provider's usual standard of care. These results are relevant for communities providing EMS services for CSHCN. PREHOSPITAL EMERGENCY CARE 2000;4:19-23

Defining Underinsurance Among Children with Special Health Care Needs: A Virginia Sample

The study sought to: 1) examine the national Children with Special Health Care Needs (CSHCN) survey to determine whether there are items that can serve to operationalize alternative definitions of underinsurance; 2) construct definitions from the survey items that are consistent with Structural and Economic definitions of underinsurance and devise an algorithm for determining underinsurance for each; and 3) compare these two underinsurance definitions with the Maternal and Child Health definition of inadequate insurance, a definition that takes an Attitudinal approach to the construct. Analyses included Virginia children who were insured throughout the survey period. Survey items from the national CSHCN survey were examined to identify items related to underinsurance. Items were divided into groups corresponding to three definitions of insurance (Attitudinal, Structural, and Economic). Algorithms were established, and underinsurance rates calculated for each definition. Logistic regression models were constructed to investigate demographic characteristics related to underinsurance. Different percentages of Virginia CSHCN were found to be underinsured based on the definitions of Attitudinal (28.9%), Economic (25.6%), and Structural (2.9%). Eight demographic characteristics and the pervasiveness of the child's special health care needs were examined in relation to underinsurance. For the Attitudinal definition, poverty level and pervasiveness were significant predictors in the model. In the model predicting Economic underinsurance status, pervasiveness and three of the demographic characteristics significantly predicted underinsurance status. In the multivariate logistic regression model for the Structural definition, none of the predictors was significantly related to underinsurance. These findings demonstrate that alternative definitions of underinsurance yield dramatically different underinsurance rates. Further, even when yielding similar rates, alternative definitions may identify substantially different sets of children. The likelihood of being underinsured has a strong association with low-income status and pervasiveness of the child's special health care needs. Understanding these factors and their implications will be important when planning accessible and comprehensive health plans and care systems for CSHCN.

Emergency Department Use among Michigan Children with Special Health Care Needs: An Introductory Study

To describe patterns of emergency department (ED) use among children dual-enrolled in Medicaid and Michigan's Children's Special Health Care Services (CSHCS). Individual claims and enrollment data from Michigan's Medicaid and CSHCS programs for the period January 1, 1998, to June 30, 1999. Claims data were linked with eligibility data and then used to develop a 100 percent sample of claims for individuals enrolled in both Medicaid and CSHCS. Poisson regression analysis was used to examine the rate of ED use for dual-enrolled children. A time-varying hazard analysis was also used to examine the impact of changes over time. The key variables were gender, age, race, county of residence, Medicaid eligibility category, and qualifying diagnosis. Dual-enrolled children under one year of age, and those with qualifying diagnoses of anemia, hemophilia, asthma, epilepsy, and juvenile diabetes displayed especially high rates of ED use. Significant geographic variation in ED use remained after controlling for qualifying diagnoses, race/ethnicity, and other factors. African Americans displayed higher rates of ED utilization than non-Hispanic whites. Supplemental Security Income (SSI) recipients demonstrated higher utilization than other groups. Children dually enrolled in CSHCS and Medicaid face diverse challenges of both poverty and chronic illness. Differences in patterns of use highlight the importance, but also the difficulty, of developing systems of care to manage complex chronic conditions in low-income populations.

Improving emergency medical services for children with special health care needs: Does training make a difference?

This study evaluated the impact of a paramedic training program on emergency medical services (EMS) responses for children with special health care needs. EMS responses for children with a congenital or acquired condition or a chronic physical or mental illness, were reviewed. Responses, related to the child's special health care need, involving paramedics who had completed our training program were compared with responses with paramedics not participating in the training. There was significantly more advanced life support treatment for responses with paramedics completing the training program compared with other responses. However, there was no significant difference in transport to a hospital or in-hospital admission between these 2 groups. This finding suggests that existing EMS protocols may play a more important role in emergency treatment and transport of children with special health care needs than specialized training of already certified paramedics.

Children's Special Health Care Services Program: Impact of Administrative Changes on Rural Needs

This study measured the impact of 1993 Children's Special Health Care Services (CSHCS) program changes on the health care needs of rural children with chronic conditions who, in a 1991 study, were found to have significantly higher unmet health care needs compared to their urban counterparts. A follow-up survey was conducted in 1994 to 1995. The percentage of rural families indicating unmet needs declined for nearly all health-care-related items from 1991 to 1994-1995. The 1993 administrative changes in the CSHCS program have improved access to medical care and social support services for rural families, eliminating much of the urban-rural gap.

U SE OF E MERGENCY M EDICAL S ERVICES BY C HILDREN WITH S PECIAL H EALTH C ARE N EEDS

Objective. This study describes emergency medical services (EMS) responses for children with special health care needs (CSHCN) in an urban area over a one-year period. Methods. A prospective surveillance system was established to identify EMS responses for children, 21 years of age or younger, with a congenital or acquired condition or a chronic physical or mental illness. Responses related to the special health care needs of the child were compared with unrelated responses. Results. During a one-year period, 924 responses were identified. Fewer than half of the responses were related to the child's special health care need. Younger children were significantly more likely to have a response related to their special needs than older children. Among related responses, seizure disorder was the most common diagnosis, while asthma was more common for unrelated responses. Almost 58% of the responses resulted in transport of the child to a hospital. Conclusions. Emergency medical services responses related to a child's special health care needs differ from unrelated responses. The most common special health care needs of children did not require treatment beyond the prehospital care provider's usual standard of care. These results are relevant for communities providing EMS services for CSHCN.