Children With Special Health Care Needs Research Articles

Access to dental care for children with special health care needs: a cross-sectional community survey within Jeddah, Saudi Arabia.

The aim of this study was to investigate the level of dental care access among children with special health care needs (CSHCN) in Jeddah, Saudi Arabia and the barriers hindering this access. Data of this cross-sectional study were obtained from self-administered surveys distributed through seven CSHCN centers. Children with autistic spectrum disorder (ASD), Down syndrome, cerebral palsy, and developmental delay were included. Univariate and bivariate analyses were conducted to describe the data. A total of 602 study participants were included in the analyses. Only 24.9% of the participated caregivers routinely visited the dentist for their CSHCN. Half of CSHCN caregivers found difficulties obtaining dental treatment. This trend was significantly greater in 12-18 years old children (p = 0.013) and in families commuting for more than one hour to dental clinics (p = 0.045). The most common reported barrier was fear of the dentist (61.6%) followed by child uncooperativeness (37.8%) and treatment costs (27.8%). CSHCN lack sufficient dental care for a variety of reasons, primarily fear of dentists, child uncooperativeness, and treatment costs. Dentists require more training and education to facilitate better access to dental care for CSHCN.

Knowledge, Attitude and Practices in Treating Children with Special Healthcare Needs among Dental Practitioners in Mumbai Metropolitan Region: A Questionnaire-based Survey

Introduction: Dentistry for children with Special Healthcare Needs (SHCN) is challenging and it is essential to understand the barriers faced by dentists in managing such patients. Aim: The aim of this survey was to assess the knowledge, attitude and practice of dental practitioners in Mumbai Metropolitan Region (MMR) in treating children with Special Healthcare Needs (CSHCN). Materials and Methods: An observational, cross-sectional Questionnaire-based study was conducted in Mumbai Metropolitan Region (MMR) from January 2021 to August 2021. A 19-item questionnaire was sent to 1624 dentists through email and/ or whatsapp. The age, gender, years of clinical practice, the type of special children encountered, the behaviour management modalities and treatment done for these children were recorded. Data collected was entered into the software International Business Management (IBM) Statistical Package for Social Sciences (SPSS) statistics version 20.0 and analysed. Microsoft word and excel (year 2019) were used to generate tables. Results: Of the 1624 surveys sent, 650 responses were received making it to 40% response rate. Majority of respondents 67% (n=433) were general dental practitioners and 64% (n=416) had their own private practice. Only 39% (n=251) dentists had treated CSHCN in their practice. The most commonly encountered disability was mental retardation and cerebral palsy 23% (n=151). Amongst the clinicians referring the case, most of them, 148 (59%) preferred to refer to paediatric dentists. Regarding the method of management, 78% (n=197) of respondents were confident in treating special children with non pharmacological behaviour management methods and 58% (n=146) were confident with pharmacological methods. The frequently performed treatment procedures were restorative and preventive methods. A total 61% (n=399) of respondents had not encountered CSHCN. Among them, 65% (n=261) felt they had inadequate training in their curriculum, 59% (n=157) wished to treat such patients in future and 56% (n=223) were interested in continuing dental education programmes on the same. Conclusion: Majority of the dentists had treated children with mental retardation, cerebral palsy and physical disabilities than emotional disabilities. Non pharmacological behaviour management methods were preferred, and preventive and restorative procedures were frequently preformed. Most of the dentists in the present study reported themselves to lack knowledge in treating children with SHCN.

A scoping review to inform care coordination strategies for youth with traumatic brain injuries: Care coordination tools

Introduction & importance Children with traumatic brain injury (TBI) report unmet needs several years after their injury and may require long-term care. However, this chronic health condition is often only treated and monitored in the short-term. Care for young persons with TBI often relies on parents to manage their child's complex care network. Effective care coordination can close these gaps and facilitate continuity of care for children with TBI. The purpose of this scoping review was to develop a better understanding of tools that improve care coordination for Children with Special Health Care Needs (CSHCN). This, in turn, can inform care for children with TBI. Methods A scoping review was conducted following the PRISMA framework and methodology. OVID/Medline, CINAHL, PsycINFO, EMBASE, and ERIC databases were searched for articles relevant to care coordination tools used with CSHCN. Results 21 articles met the criteria for inclusion in the review, and 6 major categories of care coordination tools were identified: telehealth, online health records and tools, care plans, inpatient discharge protocols, family training, and reminders. Discussion Studies examining telehealth, online tools, care plans, and family training care coordination interventions for CSHCN have shown positive outcomes and would be relevant strategies to improve the care of children with TBI. Future prospective research should investigate these tools to explore whether they might improve communication, reduce unmet needs, increase service access, and improve long-term outcomes for children with TBI.

Care Coordination for Children with Special Health Care Needs: A Scoping Review to Inform Strategies for Students with Traumatic Brain Injuries.

Chronic and complex medical issues, including traumatic brain injuries (TBIs), have significant educational implications. The purpose of this study was to identify and summarize the literature on care coordination strategies among health care professionals, educators, and caregivers for children with special health care needs (CSHCN). Clarifying factors that influence care coordination for CSHCN can inform future studies on care coordination for students with TBI. Improved understanding of these factors may lead to better communication, reduction of unmet needs, more efficient service access, and improved long-term outcomes for children. A scoping review was conducted, guided by PRISMA-ScR methodology. Five databases (CINAHL, PSYCINFO, EMBASE, ERIC, PubMed) were searched to identify relevant studies that focused on care coordination and educational settings. Twelve articles met inclusion criteria. Care coordination interventions for CSHCN used in educational settings focused on relationship-building strategies, clear procedures and roles, and education of members of the school community. Findings highlight strategies to coordinate care for CSHCN and factors that may moderate effects of these interventions. Key stakeholders should now study these strategies specifically in children with TBI.

Intersectionality: A Framework for Children with Special HealthCare Needs Research

Introduction: The experience of children with special healthcare needs (CSHCN) who hold multiply marginalized identities is underrepresented in healthcare research literature. Even less research investigates the impact of multiple systems of oppression on CSHCN experiences with healthcare providers, services, and systems. Methods: To identify gaps and areas of future research, in early 2020, a scoping review of current CSHCN healthcare literature that includes an explicit intersectionality framework or analysis was conducted. Findings: Based on the literature search results, there were zero peer reviewed articles within the CSHCN research literature that included a framework or analysis of intersectionality. Implication: CSHCN have diverse lived experiences. An explicitly intersectional approach is best suited to creating programs, treatments, interventions, and service provision that address the truly complex needs of this population within the U.S. dominant culture. Promising frameworks and future research needs are discussed.

Provision of dental services for vulnerable groups: a scoping review on children with special health care needs

BackgroundThe provision of dental services for children with special health care needs (CSHCN) needs to be considered by policymakers. This study is aimed to explore the determinant factors affecting dental and oral services provision for this vulnerable group.MethodsA review was conducted applying the 9-steps approach. Five scientific databases of PUBMED, SCOPUS, Web of Science and PROQUEST and EMBASE were searched up to 10.07.2021, applying appropriate keywords. Thematic analysis was used to analyse the extracted data, and a conceptual map was developed according to JBI manual for evidence synthesis.ResultsFrom the abstracts of the 136 articles that fulfilled the inclusion criteria, 56 articles were included. Five main themes were identified as determinants affecting the provision of dentistry services for CSHCN, including needs assessment, policy advice, oral health interventions, providers’ perception and access barriers. According to the developed conceptual map, assessing the needs of CSHCN can lead to particular policy advice. Regarding the policies, appropriate oral health interventions can be presented. These interventions, along with providers’ perception about service delivery to CSHCN and the barriers to access them, determine the provision of dentistry services for CSHCN.ConclusionsAn effective needs assessment of CSHCN and their parents/carers can lead to evidence-informed policymaking and applicable policy advice according to the needs. Then policymakers should develop interventions to improve the community’s health literacy, as well as support the seeking behaviours for appropriate services. Policymakers should also consider how to limit the barriers to accessing oral and dental health by CSHCN to decrease disparities.

The Impact of Having a Child With Special Healthcare Needs on Length of Military Service.

In 2010, the National Survey of Children with Special Healthcare Needs revealed that parents of children with special healthcare needs (CSHCN) report employment decisions are influenced by healthcare coverage needs. The U.S. military healthcare system arguably offers service member parents of CSHCN with the most comprehensive, inexpensive, long-term healthcare in the country-potentially increasing their incentive to remain in the military. This study explored the effect of having a CSHCN on the length of parental military service. A retrospective cohort was formed using the Military Health System database from 2008 to 2018. Included children were <10 years in 2010 and received ≥1 year of military healthcare between 2008 and 2010. The Pediatric Medical Complexity Algorithm categorized children as having special healthcare needs via ICD 9/10 codes as having complex chronic (C-CD), non-complex chronic (NC-CD), or no chronic disease (CD). Families were classified by the child with the most complex healthcare need. Duration of military healthcare eligibility measured parental length of service (LOS). ANOVA and linear regression analysis compared LOS by category. Logistic regression determined odds of parental LOS lasting the full 8-year study length. Adjusted analyses controlled for child age and sex, and military parent sex, rank, and marital status. Over 1.45 million children in 915,584 families were categorized as per the algorithm. Of individual children included, 292,050 (20.1%) were CSHCN including those with complex chronic and non-complex chronic conditions. After grouping by family, 80,909 (8.8%) families had a child/children with C-CD (mean LOS 6.39 years), 170,787 (18.7%) families had a child/children with NC-CD (mean LOS 6.41 years), and 663,888 (72.5%) families had children with no CD (mean LOS 5.7 years). In adjusted analysis, parents of children with C-CD and NC-CD served 0.4 [0.37-0.42] and 0.33 [0.31-0.34] years longer than parents of children with no CD; odds of parents serving for the full study period were increased 33% (1.33 [1.31-1.36]) in families of children with C-CD and 27% (1.27 [1.26-1.29]) in families of children with NC-CD. Findings indicate that military parents of CSHCN serve longer military careers than parents of children with no chronic conditions. Continued provision of free, high-quality healthcare coverage for dependent children may be important for service member retention. Retaining trained and experienced service members is key to ensuring a ready and lethal U.S. military.

Satisfaction of Oral Health Education among Parents and Caregivers Regarding Children with Special Healthcare Needs in Riyadh, Saudi Arabia

The aim of the study was to evaluate the satisfaction of an oral health promotion program among parents and caregivers of children with special healthcare needs (CSHCN) in Riyadh, Saudi Arabia. A digital survey using Google forms was used during an event to commemorate the World Disability Day. Stalls for oral health education and training were set up at Disabled Children Society, Riyadh, Saudi Arabia. Oral health education was carried out using written pamphlets, brochures, and videos. Live demonstration on dental models was used for tooth-brushing training using a powered toothbrush. Parents and caregivers were asked to complete a survey about oral health education during the event. An overall 189 parents and caregivers of CSHCN including 62 males and 127 females completed the survey. The responses were entered digitally prior to being evaluated. The respondents were parents and/or caregivers of children mostly having cerebral palsy followed by autism. Females consisted of 67% of the respondents. Eight-one percent of respondents rated it as highly satisfied. Ninety-one percent of the respondents perceived that the information provided was new for them regarding oral healthcare for CSHCN. Ninety-eight percent of respondents were likely to attend a similar event in the future. Majority of parents and caregivers of CSHCN were highly satisfied by the oral health education during the event. They felt that they can take better care of the oral health of their CSHCN after the oral health education and training. Oral health among CSHCN is neglected when compared to children among the general population. CSHCN exhibit many barriers to oral health care. Oral health promotion among CSHCN is important as they have a high unmet oral health need.

Adjusting the family's life: A grounded theory of caring for children with special healthcare needs in rural areas, Thailand.

This study aims to understand the experiences of families of children with special healthcare needs in rural areas in Thailand. Grounded theory (GT) was employed to understand families' experiences when caring for children with special healthcare needs (CSHCN) in rural areas. Forty-three family members from thirty-four families with CSHCN participated in in-depth interviews. Interviews were recorded and transcribed. The constant comparative method was used for data analysis and coding analysis. Adjusting family's life was the emergent theory which included experiencing negative effects, managing in home environment, integrating care into a community health system, and maintaining family normalization. This study describes the process that families undergo in trying to care for CSHCN while managing their lives to maintain a sense of normalcy. This theory provides some intervention opportunities for health care professionals when dealing with the complexities in their homes, communities and other ambulatory settings throughout the disease trajectory, and also indicates the importance of taking into consideration the family's cultural background.

Children with special health care needs and mothers' anxiety/depression: Findings from the Tokyo Teen Cohort study

Children with special health care needs (CSHCN) are those who require more care for their physical, developmental, or emotional differences than their typically developing peers. Among a wide range of burdens that caregivers of CSHCN experience, the mental burden of caregivers is still not well investigated. This study aimed at examining the relationship between caring for CSHCN and mothers' anxiety/depression. This study used data from the Tokyo Early Adolescence Survey, a population-based cross-sectional survey. Using screening questionnaires, we evaluated the prevalence of CSHCN and identified their primary caregivers. Focusing on mothers as caregivers, we analyzed the relationship between having CSHCN and mothers' anxiety/depression, and between the severity of children's condition and mothers' anxiety/depression. We further determined what mediates these relationships using path analyses. Among 4003 participants, we identified 502 CSHCN (12.5%), and 93% of responding caregivers were mothers. We found that mothers with CSHCN were significantly more anxious/depressed than those without CSHCN, which was closely related to the severity of children's condition. The mediation effect of social support on the relation between CSHCN and mothers' anxiety/depression was statistically significant. Mothers of CSHCN were more anxious/depressed than other mothers in this study. Social support was indicated to have a significant mediating effect on the relationship between CSHCN and mothers' anxiety/depression. Our results suggest that considering ways to offer social support may effectively relieve the mental stress experienced by mothers of CSHCN.

Addressing Parent Employment as an Essential Issue in Child Health.

In this issue of Pediatrics, Foster et al1 address the often unseen and pressing reality of the economic impact that having a child with special health care needs (CSHCN) has on families. Using data from the 2016–2017 National Survey of Children’s Health, the authors specifically address foregone family employment (FFE) and lost earnings.The numbers reported are sobering: FFE occurs in 14.5% of employed families of CSHCNs and skyrockets to 40.9% for those who have children with intellectual disability, seeming to correlate to the number of hours families raising CSHCNs must dedicate to caring for their child. Viewed through an equity lens, the authors’ findings become even more pointed. Those who have public insurance, are of Hispanic ethnicity, or whose children are younger, have functional limitations, or medical complexity seem particularly vulnerable.We know from the existing literature, well referenced by the authors, that social determinants of health (SDOHs), including family income, can directly impact health outcomes for a child.2,3 The estimated annual household loss of $18 000 among families caring for CSHCNs calculated by Foster et al1 may affect family stability in ways that resonate beyond the specific day-to-day care of the child affected, driving additional key concerns such as food insecurity and access to shelter, increasing the risk of negative health outcomes. The national aggregate lost income is staggering, estimated at $9 to $19 billion annually. However, the consequences of FFE are not confined to loss of income.4 They include decreased contributions to Social Security, lack of access to private health insurance, reduced asset acquisition, and opportunity costs related to career advancement. Because women are more likely than men to leave work to care for a CSHCN, they experience these negative impacts disproportionately. The numbers and trends Foster et al1 identify should spark further discussion about how our health care system can both better identify those families raising CSHCNs at risk for economic strain and, by extension, better support them.5The study has important implications for public policy and practice change. Strategies for policy makers may include the following6: Although policy change must be prioritized, health care providers can also address FFE from a boots-on-the-ground perspective within local practice constructs and communities.7–10 Some families may be reluctant to declare or seek help. This may be because of perceived or actual discrimination. At the level of individual patient care, the study’s findings suggest that providers consider each of the following: Foster et al1 have shined a light on an important, often overlooked stressor for families of CSHCNs. Even if providers screen diligently for SDOHs, only half of the current SDOH tools include FFE,11 further reflecting the invisible threat of FFE and calling for modification to existing tools. If we can improve our capacity to identify FFE in families caring for CSHCNs and implement the policy and practice recommendations outlined above, it is possible to imagine positive downstream effects on parent and child health, quality of life, wellness, functional outcomes, and even decreased health care system burdens as children are cared for more effectively in their communities and caregivers are able to work.

Children With Special Health Care Needs and Forgone Family Employment.

Family income is known to affect child health, but this relationship can be bidirectional. We sought to characterize this relationship by quantifying forgone family employment (FFE) due to a child's health condition in families of children with special health care needs (CSHCN) with updated figures. We conducted a secondary data analysis from the 2016-2017 National Survey of Children's Health. CSHCN with previously employed caregivers were included (N = 14 050). FFE was defined as any family member having stopped work and/or reduced hours because of their child's health or health condition. Child, caregiver, and household characteristics were compared by FFE status. Logistic regression analysis was conducted to evaluate the association between hours of medical care provide by a family member and FFE. US Bureau of Labor Statistics reports were used to estimate lost earnings from FFE. FFE occurred in 14.5% (95% confidence interval [CI] 12.9%-16.1%) of previously employed families with CSHCN and was 40.9% (95% CI 27.1%-54.7%) for children with an intellectual disability. We observed disproportionately high FFE among CSHCN who were 0 to 5 years old and of Hispanic ethnicity. We found a strong association between FFE and increasing hours of family-provided medical care, with an adjusted odds ratio (aOR) of 1.72 (95% CI 1.25-2.36) for <1 hour per week (compared with 0 hours), an aOR of 5.96 (95% CI 4.30-8.27) for 1 to 4 hours per week, an aOR of 11.89 (95% CI 6.19-22.81) for 5 to 10 hours per week, and an aOR of 8.89 (95% CI 5.26-15.01) for >10 hours per week. Lost earnings for each household with FFE were estimated at ∼$18 000 per year. With our findings, we highlight the need to implement programs and policies that address forgone income experienced by families of CSHCN.

Pediatric Complexity Tool Best Practice Alert: Early Identification of Care Coordination for Children with Special Health Care Needs.

Care coordination programs continue to be developed for children with special health care needs (CSHCN). The goals for these programs are to improve access, increase communication, and decrease the overall length of stay for CSHCN. Care coordination optimizes resources to support children's health and well-being early in their hospitalization and facilitates a smooth discharge process and transition to home. Providing care coordination for CSHCN requires collaboration from many disciplines. To achieve high-quality care coordination, early identification of medically complex pediatric patients on admission is optimal. For more efficient and timelier enrollment into our care coordination program, we created a best practice alert within our electronic medical record to help overcome the challenges in timely identification of CSHCN. The best practice alert has helped us to provide care coordination benefits to our patients earlier in their hospital course. The purpose of this paper is to describe a quality improvement initiative to improve the early identification of CSHCN on hospital admission through the development of a best practice alert.

Preventive oral health care use for children with special health care needs aged 6 through 12 years enrolled in Medicaid: A mixed methods study

BackgroundThe authors aimed to assess preventive oral health care (POHC) use for children with special health care needs (CSHCN) aged 6 through 12 years enrolled in Medicaid and identify intervention strategies to improve oral health. MethodsIn this sequential mixed methods study, the authors analyzed 2012 Medicaid data for children aged 6 through 12 years in Washington state. They used eligibility and claims data to identify special health care needs status (independent variable) and POHC use (outcome variable). They ran modified Poisson regression models to generate prevalence rate ratios. They coded data from 21 key informant interviews deductively using content analytic techniques. ResultsOf the 208,648 children in the study, 18% were identified as CSHCN and 140,468 used POHC (67.3%). After adjusting for confounding variables, the authors found no difference in POHC use by special health care need status (prevalence rate ratio, 1.00; 95% CI, 0.99 to 1.01; P = .91). In the qualitative analysis, the authors identified 5 themes: caries risk depends on a child’s specific health condition, caries complicates overall health, having a special need creates a bigger barrier to care, legislation alone is “not going to make much of a dent,” and improvements across all fronts are needed to promote the oral health of CSHCN in Medicaid. ConclusionsCSHCN enrolled in Medicaid are just as likely as children without special health care needs to use POHC, although barriers to oral health care access persist for CSHCN. Practical ImplicationsFuture efforts should focus on comprehensive strategies that address the varying levels of dental disease risk and difficulties accessing oral health care within the diverse group of CSHCN.

Progress on the Sendai framework (2015–2020): Focus on families with children with special health care needs (CSHCN)

Families with children with special health care needs (CSHCN) have increased vulnerability when facing risks of disasters. The purpose of this article is two-fold: To present an environmental scan of progress on the disaster risk reduction efforts established in the SFDRR (2015-2020), specifically addressing inclusion of persons with ASD; and to describe the exemplar of the Emergency Preparedness “Tell One” Project. Notable progress on SFDRR has been made for families with CSHCN at the global level. Inclusiveness is aligned with the SFDRR, and was implemented through a campus-community collaboration for families residing in a region susceptible to multiple disasters.

Frequency of molar incisor hypomineralization and associated factors among children with special health care needs.

BACKGROUND: Molar incisor hypomineralization (MIH) is a frequently encountered oral condition that varies from mild opacities to posteruptive enamel breakdown. No previous published studies have investigated the frequency of MIH and associated risk factors among children with special health care needs (CSHCN) to our awareness.OBJECTIVES: Assess the frequency of MIH and associated risk factors among CSHCN.DESIGN: Cross-sectional.SETTING: Schools in provincial city of Saudi Arabia.PATIENTS AND METHODS: The study was conducted among 400 (180 boys and 220 girls) special needs children. Diagnosis of MIH was according to the European Academy of Paediatric Dentistry criteria.MAIN OUTCOME MEASURE: Result of logistic regression analysis that assessed the association between MIH prevalence and associated prenatal, perinatal, and postnatal factors.SAMPLE SIZE: 400 (180 boys and 220 girls) special needs children.RESULTS: Among 400 CSHCN, 98 (24.5%) presented with MIH. Children with multiple disabilities had a 3.89 times greater risk of MIH (95% CI: 1.91–6.19, P=.002). Children with positive prenatal factors had an adjusted odds ratio (aOR) of 2.31 times for MIH (95% CI: 1.22–4.73, P=.012). Children with a childhood infection history had an aOR of 2.43 times for MIH (95% CI: 1.31–5.85, P=.014). Children with a breastfeeding history >18 months had an aOR of 3.73 for MIH (95% CI: 1.62–8.60, P=.002). Permanent maxillary first molars were the most frequently affected teeth, and demarcated opacity was the most frequent MIH type.CONCLUSION: MIH should be recognized as one of the prevalent oral health problems among CSHCN to prevent tooth mortality.LIMITATIONS: A cross-sectional study cannot establish a causal relationship.CONFLICTS OF INTEREST: None.

Study about general dentists’ perception, involving educational and treatment issues, which affect dental care for children with special health care needs in the state of Punjab (India)

Aim: The aim of this survey was to assess the general dentists’ attitude and desirability for additional training in treating children with special health care needs(CSHCN) in the region of Punjab state, India. Methods: A ten item questionnaire was sent to 1200 licensed general dentists in Punjab. The survey questioned about their demographics and their behavior in treating CSHCN. Responses to the questionnaire were tabulated and percent frequency distributions for answers to each question were computed. Results: Of the 1200 survey forms sent, 537 (44.75%) were received back. From the responses, 422 (78.60%) general dentists reported that they never treat CSHCN and the most common answer (79.10%) given for not seeing CSHCN was lack of education and treatment skills. Conclusions: These data indicate that most general dentists in Punjab state hardly treat CSHCN and the reasons they cited were poor training skills and educational experience in managing CSHCN

A natural language processing pipeline to synthesize patient-generated notes toward improving remote care and chronic disease management: a cystic fibrosis case study.

ObjectivesPatient-generated health data (PGHD) are important for tracking and monitoring out of clinic health events and supporting shared clinical decisions. Unstructured text as PGHD (eg, medical diary notes and transcriptions) may encapsulate rich information through narratives which can be critical to better understand a patient’s condition. We propose a natural language processing (NLP) supported data synthesis pipeline for unstructured PGHD, focusing on children with special healthcare needs (CSHCN), and demonstrate it with a case study on cystic fibrosis (CF).Materials and MethodsThe proposed unstructured data synthesis and information extraction pipeline extract a broad range of health information by combining rule-based approaches with pretrained deep-learning models. Particularly, we build upon the scispaCy biomedical model suite, leveraging its named entity recognition capabilities to identify and link clinically relevant entities to established ontologies such as Systematized Nomenclature of Medicine (SNOMED) and RXNORM. We then use scispaCy’s syntax (grammar) parsing tools to retrieve phrases associated with the entities in medication, dose, therapies, symptoms, bowel movements, and nutrition ontological categories. The pipeline is illustrated and tested with simulated CF patient notes.ResultsThe proposed hybrid deep-learning rule-based approach can operate over a variety of natural language note types and allow customization for a given patient or cohort. Viable information was successfully extracted from simulated CF notes. This hybrid pipeline is robust to misspellings and varied word representations and can be tailored to accommodate the needs of a specific patient, cohort, or clinician.DiscussionThe NLP pipeline can extract predefined or ontology-based entities from free-text PGHD, aiming to facilitate remote care and improve chronic disease management. Our implementation makes use of open source models, allowing for this solution to be easily replicated and integrated in different health systems. Outside of the clinic, the use of the NLP pipeline may increase the amount of clinical data recorded by families of CSHCN and ease the process to identify health events from the notes. Similarly, care coordinators, nurses and clinicians would be able to track adherence with medications, identify symptoms, and effectively intervene to improve clinical care. Furthermore, visualization tools can be applied to digest the structured data produced by the pipeline in support of the decision-making process for a patient, caregiver, or provider.ConclusionOur study demonstrated that an NLP pipeline can be used to create an automated analysis and reporting mechanism for unstructured PGHD. Further studies are suggested with real-world data to assess pipeline performance and further implications.

Barriers to Respite Care for Children with Special Health Care Needs.

The objective of this study was to estimate time-specific, population-based prevalence of 14 specific barriers to respite services, as reported by parents of children with special health care needs (CSHCN) with and without emotional, behavioral, or developmental problems (EBDPs), and to identify individual, family, and environmental characteristics associated with the most common barriers to respite care for families of CSHCN. Descriptive, bivariate, and multivariable logistic regression analyses were used to examine data from the National Survey of Children with Special Health Care Needs for 2005/2006 and 2009/2010. Among families reporting unmet need for respite care services, service availability or transportation barriers (23.8%) and cost barriers (19.8%) were the most commonly reported obstacles among all CSHCN, followed by lack of knowledge about where to obtain respite services (12.1%) and inconvenient service times (11.3%). Reports of location or availability barriers decreased significantly from 2005 to 2009, but service time barriers increased simultaneously. All types of barriers to respite services were reported significantly more frequently by CSHCN with EBDPs than those without, even when other demographic factors were controlled for. CSHCN conditional severity and discontinuity in insurance were positively associated with cost barriers, whereas CSHCN public health coverage was associated with reduced rates of reported cost and information barriers to respite care. Increased understanding of parent-reported barriers to respite care for families of CSHCN is critical to creating structural and practice-oriented solutions that address obstacles and increase access to respite care for these vulnerable families.

Pediatric siblings of children with special health care needs: Well-being outcomes and the role of family resilience

ABSTRACT Using data from the 2018 National Survey for Children’s Health , this study examined relationships between several adaptive psychological and psychosocial factors among siblings of children with special health care needs (CSHCN) compared to siblings of children without SHCN and the role of family resilience within those relationships. We conducted independent samples t-tests to determine if outcomes of interest differed between the siblings of CSHCN (n = 1486) and the siblings of typically-developing children (n = 1429). We then conducted simple linear regressions to examine family resilience as a correlate of all outcomes. Siblings of CSHCN exhibit significantly worse outcomes in academic and social school engagement, flourishing, and family resilience. Family resiliency is significantly associated with relationships involving school engagement, flourishing, and bullying. Siblings of CSHCN are at increased risk for important negative outcomes. Preventive intervention research is warranted, specifically to enhance resilience of families with CSHCN.