Special Health Care Needs Research Articles

An Expanded Approach to the Ascertainment of Children and Youth With Special Health Care Needs.

To describe the prevalence, characteristics, and health-related outcomes of children with diagnosed health conditions and functional difficulties who do not meet criteria for having a special health care need based on the traditional scoring of the Children with Special Health Care Needs (CSHCN) Screener. Data come from the 2016 to 2021 National Survey of Children's Health (n = 225 443). Child characteristics and health-related outcomes were compared among 4 mutually exclusive groups defined by CSHCN Screener criteria and the presence of both conditions and difficulties. Among children who do not qualify as children and youth with special health care needs (CYSHCN) on the CSHCN Screener, 6.8% had ≥1 condition and ≥1 difficulty. These children were more likely than CYSHCN to be younger, female, Hispanic, uninsured, privately insured, living in a household with low educational attainment, have families with more children and a primary household language other than English. After adjustment, non-CYSHCN with ≥1 conditions and ≥1 difficulty were less likely than CYSHCN, but significantly more likely than other non-CYSHCN, to have ≥2 emergency department visits, have unmet health care needs, not meet flourishing criteria, live in families that experienced child health-related employment impacts and frustration accessing services. Including these children in the calculation of CYSHCN prevalence increases the national estimate from 19.1% to 24.6%. Approximately 4 million children have both a diagnosed health condition and functional difficulties but are not identified as CYSHCN. An expanded approach to identify CYSHCN may better align program and policy with population needs.

Reconsideration of the Calculation of Children and Youth With Special Health Care Needs.

Reconsideration of the Calculation of Children and Youth With Special Health Care Needs.

Silver Diamine Fluoride Use in Children with Special Health-care Needs: Breaking the Barriers

Dental caries is the most common unmet dental need of children with special health-care needs (SHCNs), and their treatment is challenging in routine dental settings. Based on surplus evidence, silver diamine fluoride (SDF) is a simple, safe, cost-effective, and efficient topical solution for treating dental caries. It is a clear, colorless, odorless fluoride-containing solution, does not require an extensive armamentarium for its application, and can be used in any setting. However, even with worldwide acceptance, there occurs limited research regarding SDF use in children with special needs. This review aims to update the possibilities and acceptability of SDF usage in patients with special needs with dental caries as a promising option for managing dental caries and improving their quality of life.

Evaluation of Dentists’ Knowledge in Bandung City Regarding Patients with Special Health Care Needs and Behavior Management in Dental Care

Evaluation of Dentists’ Knowledge in Bandung City Regarding Patients with Special Health Care Needs and Behavior Management in Dental Care

Parent, Physician, and Therapist Experience of In-Person, Hybrid, and All-Virtual Models of Physiatry Care for Children with Special Health Care Needs

ObjectiveThe purpose of this study was to compare three models of pediatric physiatry care (in-person, hybrid, and all-virtual) in terms of parent experience and physician- and therapist-reported quality of care. We hypothesized that the all-virtual model would have lower parent experience scores and lower quality scores compared with the other two models of care. MethodsWe designed a convergent parallel mixed methods study incorporating a cluster-randomized crossover design. Quantitative data included surveys of parents, physicians, and therapists after visits to 13 medical therapy units in Northern California between January 2020 and January 2022. Qualitative data were collected in six focus groups with parents, physicians, and therapists. ResultsA total of 2455 visits were completed for 1281 unique children during the study period, including 507 in-person visits, 246 hybrid visits, and 1702 all-virtual visits. There were no differences in parent experience scores between the three models of care. Physicians and therapists rated all-virtual visits significantly lower in terms of quality of care, parent education, and physical exam, compared with the other two models of care, but qualitative results highlighted specific instances where all-virtual visits could be useful. ConclusionsOur findings suggest that parents, therapists, and physicians find a hybrid virtual model is an acceptable model of care that maintains the quality of care and facilitates parent education. All-virtual models may be appropriate for specific circumstances but are perceived as lower quality. Research exploring implementation of these models would be valuable for providing practical guidance in the future.

A Randomized Controlled Cluster Trial of an Obesity Prevention Program for Children with Special Health Care Needs: Methods and Implications.

Children with disabilities have higher prevalence estimates of obesity than typically developing children. The Healthy Caregivers-Healthy Children Phase 3 (HC3) project implemented an obesity prevention program adapted for children with special health care needs (CSHCN) that includes dietary intake and physical activity (PA) components. The primary outcome was a change in dietary intake, PA, and the body mass index (BMI) percentile. Ten childcare centers (CCCs) serving low-resource families with ≥30 2- to 5-year-olds attending were randomized to either the intervention (n = 5) or control (n = 5). The HC3 CCCs received (1) snack, beverage, PA, and screen time policies via weekly technical assistance; (2) adapted lesson plans for CSHCN; and (3) parent curricula. The control CCCs received a behavioral health attention curriculum. HC3 was delivered over three school years, with data collected at five different timepoints. It was delivered weekly for six months in year one. To ensure capacity building, the HC3 tasks were scaled back, with quarterly intervention delivery in year 2 and annually in year 3. Adaptations were made to the curriculum to ensure appropriate access for CSHCN. Given that the program was being delivered during the COVID-19 pandemic, special modifications were made to follow CDC safety standards. The primary outcome measures included the Environment and Policy Assessment and Observation (EPAO) tool, standardized dietary intake and PA assessments, and the child BMI percentile. CCCs are an ideal setting for targeting CSHCN for obesity prevention efforts as they provide an opportunity to address modifiable risk factors.

Children With Special Health Care Needs: An Analysis of National Survey of Children's Health Database.

Background Children with Special Health Care Needs (CSHCN) represent a diverse pediatric population requiring healthcare services beyond typical childhood needs. This study analyzes data from the 2016-2020 National Survey of Children's Health Database to elucidate demographic patterns, prevalence rates, and nuanced factors influencing the health and well-being of CSHCN. Methods This retrospective observational study focuses on children aged 0-17 who are identified as CSHCN based on Maternal and Child Health Bureau criteria. A comprehensive analysis of the National Survey of Children's Health (NSCH) database examines key variables, including health outcomes, healthcare utilization, parental-reported health status, and socio-demographic factors. Stratified random sampling ensures national representation. Results The study encompassed 40,335 patients, revealing that 14.6% (CI: 14.0-15.3, n=6,445) of CSHCN received care in a well-functioning system. Across age groups, 19.1% (CI: 14.0-15.3, n=6,445) of CSHCN aged 0-5 received ongoing treatment, contrasting with 5.7% (CI: 5.2-6.2, n=1,599) in the 12-17 years group. Males exhibited a prevalence of 15% (CI: 14.1-15.9, n=3,674), and females had 14.2% (CI: 13.2-15.2, n=2,771). Racial disparities were noted; non-Hispanic Native Hawaiian/Other Pacific Islander children had a 3% (CI: 1.1-8.1, n=6) prevalence. Across Federal Poverty Level categories, prevalence ranged from 12.5% (CI: 11.5-13.6, n=1,753) to 17.7% (CI: 16.6-18.9, n=2,856). Notably, 18.5% (CI: 17.4-19.7, n=3,515) of children without adverse experiences were CSHCN. Among CSHCN in two-parent currently married households, 15.9% (CI: 15.0-16.8, n=4,330) received treatment, while those in unmarried households had a prevalence of 12.9% (CI: 10.5-15.7, n=335). CSHCN with parents born in the United Statesshowed a prevalence of 15.4% (CI: 14.7-16.1, n=5,257). Conclusion This study provides valuable insights into the prevalence and demographic patterns of CSHCN. Limitations include potential recall bias and the retrospective study design. Despite these constraints, the findings lay a foundation for future research and targeted interventions, fostering a deeper understanding of the evolving landscape of pediatric healthcare in the United States.

Evaluation of Oral and Dental Health in Pediatric Patients with Special Health Care Needs

Evaluation of Oral and Dental Health in Pediatric Patients with Special Health Care Needs

Advancing dental care access for patients with disabilities: A global scoping review of predoctoral training.

To examine predoctoral training programs that address the unique needs of patients with special healthcare needs (SHCN) and provide an overview of current global training initiatives, while exploring innovative approaches to enhance dental students' preparation in managing SHCN patients. A scoping review (SR) was conducted focusing on three key concepts: dental education, pre-doctoral training, and intellectual disability/developmental disability. The search encompassed five databases including Medline, Embase, Dentistry and Oral Sciences Source (EBSCO), Global Health (EBSCO), and WHO Global Index Medicus, following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. EndNote and Covidence were utilized to prevent duplication and facilitate title/abstract screening. After screening abstracts, a total of 2309 articles were initially identified with 28 articles meeting eligibility criteria for data extraction relevant to the research question. Two major categories characterized the key findings included in the review: 12 interventional studies and 16 perception-based studies. This SR revealed that dental students are not adequately trained to treat special needs populations; consequentially, dental students lack confidence in providing high-quality care to this demographic. The absence of standardized training poses a global challenge, exacerbating care disparities. Addressing this issue is crucial to better prepare dental students and advance equitable access and quality care for underserved populations.

Caregivers of Children with Special Healthcare Needs: A Quantitative Examination of Work-Family Culture, Caregiver Burden, and Work-Life Balance

The purpose of the current study was to examine the relationships between organizational work-family culture, caregiver burden, and work-life balance among employed caregivers of children with special healthcare needs. The potential moderating role of organizational work-family culture in the relationship between caregiver burden and work-life balance was also investigated. Using convenience sampling, data were collected from 150 primary caregivers who work or recently worked in the past three months and have at least one child with a special healthcare need. Participants completed an online survey. Findings revealed increasing caregiver burden was related to lower work-life balance, while organizational work-family culture was positively related to it. Organizational work-family culture, and two of its three facets (i.e., managerial support and time demands), were significant moderators, but only before COVID-19. Future researchers could focus on underrepresented groups and communities, examine organizational work-family culture in various industries, and improve work-life balance during social and economic downturns. With increases in dual earner and single parent households, employers should consider how their culture supports employees with households with a child with special healthcare needs. This is the first study to apply organizational work-family culture to employed caregivers with a child with special healthcare needs and test it as a moderator of the relationship between caregiver burden and work-life balance.

Exploring Psychosocial Distress in Caregivers of Children and Youth With Special Health Care Needs.

Caring for a child or youth with special health care needs (CYSHCN) can be overwhelming. Parents and caregivers may experience psychosocial distress, such as depression, frustration, and hopelessness. The purpose of the current study was to gain further insight into families' perspectives on the psychosocial impacts of caring for CYSHCN to identify gaps in health care systems and strengthen systems of support. A qualitative descriptive design was used in 16 parents and caregivers. Colaizzi's method of analysis and semi-structured interviews were used. Six themes emerged from this study: (1) Stigma and Isolation, (2) Religion as a Coping Mechanism, (3) Financial Challenges, (4) Bearing the Burden, (5) Familial Denial, and (6) System-Related Concerns. Psychiatric-mental health nurses (PMHNs) are in a pivotal position to use their knowledge, skills, and experiences to guide families. PMHNs can also engage communities and enhance mental health promotion to break the stigma associated with having a CYSHCN. [Journal of Psychosocial Nursing and Mental Health Services, 62(9), 37-46.].

Barriers to healthcare access for children with congenital heart disease in eight Latin American countries.

Mortality from congenital heart disease has decreased considerably in the last two decades due to improvements in overall health care. However, there are barriers to access to healthcare in Latin America for this population, which could be related to factors such as healthcare system, policies, resources, geographic, cultural, educational, and psychological factors. Understanding the barriers to access to care is of paramount importance for the design and implementation of policies and facilitate the provision of care. The aim of the study was to investigate the perception of barriers to access to health care on parents/guardians of children with congenital heart disease in selected Latin American countries. A descriptive, cross-sectional study, in which parents/guardians or primary caregivers of children with congenital heart disease was recruited to participate and surveyed. Once the informed consent process had been completed, a set of paper-based scales was used to collect data, namely socioeconomic and demographic information, the Barriers to Care for Children with Special Health Care Needs Questionnaire, and the General Health Questionnaire. In total, 286 participants completed the surveys, with an average age of 34.81 years and 73.4% being female. Mean score of overall barriers was 54.45 (minimum score 39, maximum score 195, higher scores show greater perception of barriers). In Mexico, the parents/guardians of children perceived fewer barriers to access (46.69), while Peru is the country where the most barriers were perceived (69.91). Nonpoor participants showed higher overall barrier perception scores (57.34) than poor participants (52.58). The regression analysis demonstrated the overall perception of barriers was positively associated with individual and social factors, such as educational level, contract status, household monthly income, and psychological well-being and with the country of the participants. Multiple factors are associated with the perception of barriers to accessing health care for children with congenital heart disease, including socioeconomic status, expectations, psychological well-being, and structural factors.

The Indian Academy of Pediatrics and Directorate General of Health Services, Government of India White Paper on Transition of Care for Youth with Special Health Care Needs

The Indian Academy of Pediatrics and Directorate General of Health Services, Government of India White Paper on Transition of Care for Youth with Special Health Care Needs

An Exploratory Study of Educators' Perspectives Towards Hospital School Program Support for Children with Special Health Care Needs After Hospitalization.

More than 14 million children in the United States are identified as children with special healthcare needs (CSHCN). Rates of hospitalization for CSHCN with chronic conditions as well as re-admissions have been increasing in recent years. For hospitalized children transitioning back to their school of record, a host of issues may arise such as socioemotional concerns, peer rejection, and being behind in academics. Hospital-based school programs (HBSPs) play an important role in the transition back to a child's school of record. Utilizing a database of inpatient CSHCN at a midwestern children's hospital's HBSP, private and public-school educators associated with the previously hospitalized CSHCN were asked to complete an online survey to gather their perspectives related to the child's transition back to the school of record upon hospital discharge. Overall, educators' perspectives of the HBSP were positive while perceptions related to communication provided by the HBSP were mixed. Educators surveyed reported a lack of training related to working with CSHCN. Finally, accommodations and services offered to students upon return to school focused mostly on academic performance and attendance. Study limitations and implications for practice in schools are discussed.

Global oral health policies and recommendations for children with special health care needs and their applicability and effectiveness during theCOVID -19 pandemic: a systematic review.

This systematic review aims to assess effectiveness of oral health policies, recommendations and guidelines in safeguarding oral health of children with special healthcare needsduring COVID-19. This systematic review evaluated the adaptation of global oral health policies for children with special healthcare needs (SHCN) during the COVID-19 pandemic, to provide evidence-based insights to inform policymakers and healthcare providers amid the ongoing global health crisis. The study focused on assessing the effectiveness of these adaptations in ensuring equitable access to quality dental care for this vulnerable group. A PRISMA guided online search through LILIACS, PubMed, Scopus, COCHRANE and grey literature was conducted. The search strategy incorporated a combination of subject headings(MeSH terms) and free-text terms related to "oral health," "dental health," "policy," "effectiveness," "dental practice guidelines," "oral health policies," and "special care needs children." Eligibility criteria included oral health policies, recommendations and guidelines targeting individuals/children with special care needs. Both qualitative and quantitative studies published in English from 2008 to 2023 were included. Sixteen guidelines, recommendations and policies, from six authorities were identified. These documentations addressed six different areas mentioned broadly as comprehensive care, ethical considerations, preventive and therapeutic measures, equity, patient-centric treatment, and reducing disparities signaling a paradigm shift. International collaborations and standardization of guidelines indicated a unified approach. The review also emphasized on a commitment to continuous improvement through quality measurement, systematic referral management, and needs assessment. With the exception of two documents, the remaining guidelines did not address COVID-19 or provide specific adaptations for it. The lack of emphasis on individual condition was notable, as the guidelines generally took a more generalized approach toward individuals with special healthcare needs. In conclusion, this review assessed the impact of COVID-19 on oral healthcare for individuals with special needs. It underscores global and local efforts for equitable access, patient-centric care, and preventive measures. The lessons learned advocate for a resilient, inclusive healthcare framework capable of meeting diverse needs. CRD 42023452475.

Health Equity and Children With Medical Complexity/Children and Youth With Special Health Care Needs: A Scoping Review

A scoping review was conducted to systematically map the research on children with medical complexity and children and youth with special health care needs (CYSHCN) surrounding health equity. Fifteen articles were reviewed with focus on: access to care, quality of life and well-being, and insurance challenges/financing. Findings suggest CYSHCN require more and different types of services than those for typically developing children and youth, yet the current system is not ensuring access to these services. It is important to understand the unique perspectives, challenges, and opportunities of and for this population to better inform policy, research, and practice.

The Lived Experience of Parents of Children and Youth With Special Healthcare Needs on Public and Private Insurance: A Phenomenological Study.

The number of children and youth with special health care needs (CYSHCN) is steadily growing in the United States. There are significant differences between private and public health plans in terms of cost, adequacy, and parent satisfaction. The purpose of this study was to understand the experiences of parents with CYSHCN enrolled in public and private insurance with or without a nurse care coordinator. This study also sought to understand parents' experience of support. The primary practice setting was participants' choice of location. A qualitative descriptive design was used with 16 parents of children and young adults aged 2 to 21 years. Semistructured interviews were used, and Colaizzi's (1978) eight steps was the selected interpretive method. Five themes emerged for parents navigating their child's insurance in the presence or absence of a nurse care coordinator: (1) Struggle with Self-Preservation, (2) Abandonment and Isolation, (3) Self-Reliance and Advocacy, (4) Interdependence, and (5) Lifeline. These themes were also dependent on the type of insurance and sources of support available. Models centered on care coordination can also be used as a mechanism to guide nurse care coordinators in practice. Providing care coordination support could help lessen the caregiver burden especially while navigating public or private insurance. Results highlighted how insurance companies can make potential changes within the health plan infrastructure. Incorporating nursing care coordination activities not only results in health care savings for the health plan but also improved health outcomes for its enrollees.

Perceived Value of the Inclusion of Parent-to-Parent Support in Case Conferences and Care Planning for Children With Special Healthcare Needs.

This chapter qualitatively explored the impact of including parent liaisons (i.e., parents with lived experience caring for a child with complex needs, who support other caregivers in navigating child and family needs) in a case conferencing model for children with complex medical/social needs. Case conferences are used to address fragmented care, shared decision-making, and set patient-centered goals. Seventeen semi-structured interviews were conducted with clinicians and parent liaisons to assess the involvement of parent liaisons in case conferencing. Two main themes included benefits of parent liaison involvement (10 subthemes) and challenges to parent liaison involvement (5 subthemes). Clinicians reported that liaison participation and support of patients reduced stress for clinicians as well as family members. Challenges to liaison involvement included clinical team/parent liaison communication delays, which were further exacerbated by the COVID-19 pandemic. Parent liaison involvement in case conferences is perceived to be beneficial to children with complex needs, their families, and the clinical team. Integration of liaisons ensures the familial perspective is included in clinical goal setting.

Teachers reported that children with special health care needs displayed more attention problems.

Children with special health care needs (SHCN) perform more poorly at school compared to their classmates. Specific causal pathways have not yet been extensively studied. Therefore, we investigated teacher-rated global attention, an important prerequisite for educational attainment, in children with SHCN. Data of a population-based prospective cohort study, which recruited preschool children from the Mainz-Bingen area, Germany, were analysed. Children with SHCN were identified by the Children with Special Health Care Needs screening tool. In 2016, global attention was reported by teachers at the end of first grade (mean age: 7.3 years) on a 5-point rating scale ranging from -2 through +2. Associations between SHCN consequences and teacher-rated attention were estimated by linear mixed models, adjusted for confounding variables. We included 1921 children (51% males); of these, 14% had SHCN. Compared to their classmates, children with SHCN had poorer teacher-rated attention scores (adjusted mean difference: -0.35, 95% CI: -0.52 to -0.17). The effect was strongest among children with treatment or counselling for mental health problems or functional limitations. The effect remained after excluding children with attention deficit hyperactivity disorder from the analysis. Children with SHCN showed more teacher-rated attention problems, which could explain their lower educational attainment.

Oral Health of Children and Youth with Special Healthcare Needs in Kano, Nigeria

Abstract Context: Children and youth with special healthcare needs (CYSHCN) are “those 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.” Among the challenges this population faces in accessing healthcare, oral health is regarded as their most significant treatment need. Previous studies on CYSHCN in Nigeria have relied on data from the south. Aim: The objective of this study is to describe the oral health status of CYSHCN in a northern Nigeria population. Settings and Design: Aminu Kano Teaching Hospital (AKTH) is a tertiary-level hospital located in Kano state, northwest Nigeria. Materials and Methods: Clinic records of CYSHCN who received treatment from the Paediatric Dentistry clinic of AKTH between 2017 and 2022 were retrieved and analyzed. Oral conditions were diagnosed based on the World Health Organization protocols. Statistical Analysis Used: Categorical variables were described using frequencies and percentages. Ages were described in terms of mean and standard deviation. Chi-square statistics were used to test for associations between categorical variables. The level of significance was set at a P value of ≤0.05. Conclusion: Hematological disorders were the most prevalent medical conditions of CYSHCNs seen in AKTH. Dental caries was the prevalent dental condition in the population.