Sources of Emotional Support Among Family Caregivers of Children With More Complex Special Health Care Needs.

Predicting Emotional Well-Being in Caregivers of Children with More Complex Special Healthcare Needs

The purpose of this work was to determine whether children with special health care needs in New Jersey's State Children's Health Insurance Program are less likely to become uninsured than children without special health care needs. We used the 2003 New Jersey FamilyCare Supplement to the New Jersey Family Health Survey. Children were randomly selected from the universe of children enrolled in New Jersey FamilyCare as of May 2002, and their families were surveyed during 2003 (N = 675). The Children With Special Health Care Needs Screener was used to identify 5 types of special health care needs. We estimated multinomial logistic regression models of final enrollment status according to the presence of > or = 1 special health care need, controlling for demographic characteristics. Roughly 1 of every 5 children in New Jersey FamilyCare had > or = 1 special health care need. Older children and boys had greater odds of having special health care needs than others. Children with special health care needs had only one fourth the odds of becoming disenrolled and uninsured compared with children without special health care needs, even when controlling for age, gender, race/ethnicity, and insurance plan level. There was no difference in likelihood of finding other health insurance according to children with special health care needs status. Children with special health care needs were more likely than children without such needs to be covered by health insurance at the time of the survey, either by retaining State Children's Health Insurance Program coverage or by finding other insurance. The higher retention of children with special health care needs in New Jersey FamilyCare is good news for families of these children and their advocates. However, higher health care costs for these children should be considered in federal and state budget planning for the State Children's Health Insurance Program.

The goal was to evaluate whether having a functional limitation was associated with health care needs and experiences of children with special health care needs. We used caregivers' responses in the National Survey of Children with Special Health Care Needs (2001). Functional limitation was categorized as severe, some, or no limitation. We performed analyses of the relationships of functional limitation to measures of health care needs and experiences. Children with special health care needs with severe functional limitation were more likely to have received specialized educational services, to have had physician visits, and to have needed health services, compared with those with no limitation. They had significantly greater odds of delayed care, unmet health care and care-coordination needs, referral problems, dissatisfaction, and difficulty using health services, compared with those without limitation. Caregivers of children with special health care needs with severe limitation were twice as likely as those with no limitation to report that providers did not spend enough time, listen carefully, provide needed information, and make family members partners in the child's care. Compared with children with special health care needs without limitation, those with severe limitation had worse health insurance experiences, in terms of insurance coverage, copayments, being able to see needed providers, and problems with health insurance. The impact on families (financial problems, need to provide home care, or need to stop or to cut work) of children with special health care needs with severe functional limitation was much greater than the impact on families of children with special health care needs without limitation. For most measures examined, results for some limitation were between those for severe limitation and no limitation. Functional limitation is significantly associated with the health care needs and experiences of children with special health care needs.

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.

BackgroundElectronic health record (EHR)–integrated digital personal health records (PHRs) via Fast Healthcare Interoperability Resources (FHIR) are promising digital health tools to support care coordination (CC) for children and youth with special health care needs but remain widely unadopted; as their adoption grows, mixed methods and implementation research could guide real-world implementation and evaluation.ObjectiveThis study (1) evaluates the feasibility of an FHIR-enabled digital PHR app for CC for children and youth with special health care needs, (2) characterizes determinants of implementation, and (3) explores associations between adoption and patient- or family-reported outcomes.MethodsThis nonrandomized, single-arm, prospective feasibility trial will test an FHIR-enabled digital PHR app’s use among families of children and youth with special health care needs in primary care settings. Key app features are FHIR-enabled access to structured data from the child’s medical record, families’ abilities to longitudinally track patient- or family-centered care goals, and sharing progress toward care goals with the child’s primary care provider via a clinician dashboard. We shall enroll 40 parents or caregivers of children and youth with special health care needs to use the app for 6 months. Inclusion criteria for children and youth with special health care needs are age 0-16 years; primary care at a participating site; complex needs benefiting from CC; high hospitalization risk in the next 6 months; English speaking; having requisite technology at home (internet access, Apple iOS mobile device); and an active web-based EHR patient portal account to which a parent or caregiver has full proxy access. Digital prescriptions will be used to disseminate study recruitment materials directly to eligible participants via their existing EHR patient portal accounts. We will apply an intervention mixed methods design to link quantitative and qualitative (semistructured interviews and family engagement panels with parents of children and youth with special health care needs) data and characterize implementation determinants. Two CC frameworks (Pediatric Care Coordination Framework; Patient-Centered Medical Home) and 2 evaluation frameworks (Consolidated Framework for Implementation Research; Technology Acceptance Model) provide theoretical foundations for this study.ResultsParticipant recruitment began in fall 2022, before which we identified >300 potentially eligible patients in EHR data. A family engagement panel in fall 2021 generated formative feedback from family partners. Integrated analysis of pretrial quantitative and qualitative data informed family-centered enhancements to study procedures.ConclusionsOur findings will inform how to integrate an FHIR-enabled digital PHR app for children and youth with special health care needs into clinical care. Mixed methods and implementation research will help strengthen implementation in diverse clinical settings. The study is positioned to advance knowledge of how to use digital health innovations for improving care and outcomes for children and youth with special health care needs and their families.Trial RegistrationClinicalTrials.gov NCT05513235; https://clinicaltrials.gov/study/NCT05513235International Registered Report Identifier (IRRID)DERR1-10.2196/46847

Progress, Persistence, and Hope: Building a System of Services for CYSHCN and Their Families.

Perceived Need for Mental Health Care and Service Use Among Adults in Western Europe: Results of the ESEMeD Project

Many youth with special health care needs have difficulties transferring to adult medical care. To address this, the Maternal and Child Health Bureau has made receipt of transition services a core performance outcome for community-based systems of care for youth with special health care needs. In this article we describe the results for the transition core outcome from the 2005-2006 National Survey of Children With Special Health Care Needs. We also describe changes in the measurement strategy for this outcome since the first National Survey of Children With Special Health Care Needs in 2001. In the nationally representative, cross-sectional 2005-2006 National Survey of Children With Special Health Care Needs, parent or guardian respondents of 18198 youth with special health care needs (aged 12-17) were asked if they have had discussions with their child's health care providers about (1) future adult providers, (2) future adult health care needs, (3) changes in health insurance, and (4) encouraging their child to take responsibility for his or her care. All 4 components had to be met for the youth to meet the overall transition core outcome. Those who had not had transition discussions reported if such discussions would have been helpful. Overall, 41% of youth with special health care needs met the core performance outcome for transition. Forty-two percent had discussed shifting care to an adult provider, 62% discussed their child's adult health care needs, and 34% discussed upcoming changes in health insurance. Most (78%) respondents said that providers usually or always encourage their child to take responsibility for his or her health. Non-Hispanic black or Hispanic race/ethnicity, lower income level, not speaking English, and not having a medical home reduced the odds of meeting the transition core outcome. Current performance on the transition core outcome leaves much room for improvement. Many parents feel that having transition-related discussions with their health care providers would be helpful. Future clinical and policy-level research should be directed at identifying barriers to, and recommending content for, health transition discussions.

Identifying children with Special Health Care Needs in Alexandria, Egypt

We examined potential barriers to enrollment in public programs among low-income children with special health care needs who are uninsured. Barriers considered include parents not knowing about the Medicaid and State Children's Health Insurance programs, not believing that their child is eligible for public coverage, not perceiving the enrollment processes as easy, and not wanting to enroll their child in a public program. The source of data is the 2001 National Survey of Children With Special Health Care Needs. A series of 5 questions about the child's health needs, known as the Children With Special Health Care Needs Screener, was used to identify children with special health care needs. Uninsurance is defined as having no insurance coverage at the time of the survey. Low-income families are defined as those with household incomes below 200% of the federal poverty level. The analytic sample consists of 968 low-income uninsured children with special health care needs. We examined the socioeconomic and demographic characteristics of the sample, the reasons the children lack coverage, and the awareness and perception measures, both individually and combined as a summary measure. Many low-income parents with uninsured children with special health care needs do not have full information about Medicaid and State Children's Health Insurance programs or do not have positive perceptions of the application processes. Although 93.5% had heard of at least 1 of the 2 programs, only 54.6% believed that their child was eligible for public coverage, and just 48.1% believed that the application processes were easy. Almost all said that they would enroll their child if told he or she was eligible for public coverage. Understanding why uninsured children with special health care needs do not participate in public programs is important, because these programs have the potential to cover almost all of this population. Initiatives to increase enrollment should yield real dividends given that the vast majority of low-income uninsured children with special health care needs have parents who say they would enroll their children in public coverage.

The National Survey of Children with Special Health Care Needs

* Abbreviations: MCH = : Maternal and Child Health (program) • CSHCN = : Children With Special Health Care Needs (program) • DSCSHCN = : (Maternal and Child Health Bureau's) Division of Services for Children With Special Health Care Needs. Developing community systems of services for children with special health care needs represents a significant challenge for pediatricians, families, managed care organizations, and public and private agencies providing services to this population. At the state level, Maternal and Child Health (MCH) and Children With Special Health Care Needs (CSHCN) programs are vested with the responsibility for planning and developing systems of care for all children with special health care needs. Historically, these programs have been supported through Title V of the Social Security Act, with state-matching funds, to provide health services to selected groups of children with special needs, typically those with complex physical conditions. However, during the last half-century, service systems have become increasingly complex as a result of health, education, and social policy changes, as well as changes in the epidemiology of child health, including increases in the number and proportion of children with chronic conditions and disabilities and changes in their case-mix.1-4 These changes have resulted in gaps in some service areas and duplication in other areas, as well as fragmentation in the way service systems are organized.5 Recognizing these difficulties, health policy leaders at the state and federal levels, with broad input from public and private agencies, providers, and families, effected legislative changes in the federal Omnibus Budget Reconciliation Act of 1989, which expanded the mission of CSHCN programs to facilitate the development of community-based systems of services for children with special health care needs and their families. Since then, the explosive growth of managed care has presented new challenges and opportunities as well as a heightened urgency for the development of systems of care that integrate health and related services for this population.6 7 Developing systems to serve children with special health care needs requires a clear definition of the population to … Address correspondence and reprint requests to: Merle McPherson, MD, Maternal and Child Health Bureau, Room 18A27, Parklawn Bldg, 5600 Fishers Ln, Rockville, MD 20857.

We sought to examine the health care experiences of children with autism spectrum disorder and the impact of autism spectrum disorder on the family and to assess whether having a medical home is associated with less family impact. We used the 2005-2006 National Survey of Children With Special Health Care Needs to compare 2088 children with special health care needs, aged 3 to 17 years, reported by their parents to have autism spectrum disorder, with children with special health care needs with "other emotional, developmental, or behavioral problems" (excluding autism spectrum disorder; n=9534) and 26751 other children with special health care needs. We used weighted logistic regression to examine unmet needs for specific health care and support services, delayed care, no usual care source or personal physician, difficulty receiving referrals, and financial, employment, or time problems because of child's care. Nationally, an estimated 535000 children have special health care needs and autism spectrum disorder, a prevalence of 86 per 10000 children aged 3 to 17 years. Among children with special health care needs, 5.6% have autism spectrum disorder. Compared with other children with special health care needs without emotional, developmental, or behavioral problems, children with special health care needs with autism spectrum disorder were more likely to have unmet needs for specific health care services, family support services, delayed or foregone care, difficulty receiving referrals, and care that is not family centered. Children with special health care needs with autism spectrum disorder were more likely to live in families that report financial problems, need additional income for the child's medical care, reduce or stop work because of the child's condition, spend >or=10 hours per week providing or coordinating care, and paid more than $1000 in the previous year for the child's care. The financial impacts of autism spectrum disorder were significantly more burdensome when children with special health care needs did not have a medical home. Children with special health care needs with autism spectrum disorder are significantly more likely to have problems regarding access to care and unmet needs, and their families have greater financial, employment, and time burdens compared with other children with special health care needs. Receipt of primary care in a medical home may reduce these burdens.

BackgroundImmunization is a cost-effective way to prevent infectious diseases in children, but parental hesitancy leads to low vaccination rates, leaving children at risk. Caregivers of children with special health care needs are more hesitant about vaccines than those of healthy children.ObjectiveThe aim of the study is to investigate the changes in caregivers’ vaccination hesitation of children with special health care needs before, during, and after the COVID-19 pandemic in China and to identify associated factors for caregivers’ attitudes toward National Immunization Program (NIP) and non-NIP vaccines.MethodsWe included 7770 caregivers of children with special health care needs (median age 7.0, IQR 2.4-24.1 months) who visited the Vaccination Consultation Clinic at Children’s Hospital, Zhejiang University School of Medicine (Hangzhou, China) from May 2017 to May 2023. General and clinical information was extracted from the immunization evaluation system for children with special health care needs and medical records. We compared the differences in caregivers’ willingness and hesitation for vaccinating their children across the 3 stages of the COVID-19 pandemic using chi-square tests. Multinomial logistic regression models were used to identify independent variables that were associated with caregivers’ willingness and hesitation toward NIP and non-NIP vaccines.ResultsThere is a statistically significant difference in caregivers’ vaccine hesitancy before, during, and after the COVID-19 pandemic (P<.05). During the COVID-19 pandemic, the percentages of choosing NIP, alternative non-NIP, and non-NIP vaccines are highest (n=1428, 26%, n=3148, 57.4%, and n=3442, 62.7%, respectively) than those at other 2 stages. In comparison, caregivers’ hesitation toward NIP and non-NIP vaccines is lowest (n=911, 16.6% and n=2045, 37.3%, respectively). Despite the stages of the COVID-19 pandemic, multiple factors, including children’s age and sex, parents’ educational level, comorbidities, and history of allergy, were significantly associated with caregivers’ attitude toward NIP and non-NIP vaccines (P<.05). The profiles of risk factors for hesitancy toward NIP and non-NIP vaccines are different, as indicated by the results from the logistic regression models.ConclusionsThis study demonstrated that caregivers’ willingness to vaccinate their children with special health care needs with NIP and non-NIP vaccines was highest during the COVID-19 pandemic in China, and their hesitancy was lowest. Additionally, we have identified multiple factors associated with caregivers’ willingness and hesitancy to vaccinate their children. These findings provide evidence-based support for developing personalized health education strategies.

Dr Van Cleave's current address is Department of Pediatrics, Center for Child and Adolescent Health Policy, MassGeneral Hospital for Children, 50 Staniford St, Room 901, Boston, MA 02114. The association between bullying, being bullied, or being a bully/victim and having a special health care need has not been well described in a national sample of children with a broad variety of special needs. We aimed to determine the prevalence of bullying, being bullied, or being a bully/victim in children with special health care needs and associations of behaviors with particular types of special needs. We performed a secondary data analysis using the National Survey of Children's Health, a nationally representative telephone survey conducted by the National Center for Health Statistics of >102,000 US households. We measured associations between having a special health care need and being a victim of bullying, bullying other children, and being a bully/victim in children and adolescents aged 6 to 17 years. Multiple logistic-regression models were used to examine the association of children with special health care needs overall, and of particular special needs, with the bullying measures. Overall, children with special health care needs were 21% of the population. In multivariate models adjusting for sociodemographic factors, being a child with special health care needs was associated with being bullied but not with bullying or being a bully/victim. Having a chronic behavioral, emotional, or developmental problem was associated with bullying others and with being a bully/victim. Having a special health care need generally is associated with being bullied, and having a behavioral, emotional, or developmental problem is associated with bullying others and being a bully/victim. These findings may help pediatricians, mental health providers, and schools use targeted screening and interventions to address bullying for children with special health care needs.