Special Health Care Needs Research Articles

Children and Youth with Special Health Care Needs: Progress Towards More Family-Centered Systems of Care.

Children and youth with special health care needs have increasingly been included in community and society over the past 50 years. Changing definitions and programs in the education, health, and public health/Title V sectors document this greater inclusion. The most profound change was in the education system, with the passage of legislative mandates for inclusion and parental rights. Although the health system has no similar universal mandate, the sequential passage of Medicaid, Children's Health Insurance Plan, and the Patient Protection and Affordable Care Act led to expanded health care coverage with no pre-existing conditions and lifetime caps. Title V of the Social Security Act, originally passed in 1935, evolved from a focus on individual medical services to a public health systems approach focusing on building family-centered, coordinated, comprehensive care in community settings. Most of the changes in all the sectors are the result of the advocacy and engagement of parents and families; the Maternal and Child Health Bureau was a supportive and innovative leader for family-professional partnerships. Much work on understanding disparities across the sectors has led to more recent focus on equity.

Parental acceptance of dental treatment with SDF in children with CP.

This study aims to evaluate parental acceptance of dental treatment with silver diamine fluoride (SDF) in children with cerebral palsy (CP). The present study is a case-control study with 80 children in the age range of 6-11 years. Group I consisted of children diagnosed with CP and Group II consisted of children without any Special Health Care Needs and systemic conditions. Preoperative and postoperative behavior assessment was done using Frankl's behavior Rating Scale. 38 % SDF application was done in any one primary molar with occlusal dentinal caries. A well-designed validated structured questionnaire with 10 questions was developed to assess the parental acceptance of dental treatment with SDF. The questionnaire comprised 10 close-ended questions with subdivisions on socio-demographic details, the reason for the previous and current dental visit, and acceptance of dental treatment with SDF. The data were analyzed using SPSS (version 26, IBM, Chicago, USA). Continuous variables were expressed as mean±standard deviation (M±SD). Categorical variables were expressed as frequency (n) and percentage (%). The chi-square test was used for qualitative analysis. The level of significance was set at 5%. The number of children showing positive behavior on Frankl's behavior Rating Scale increased from 55% to 70% after dental treatment with SDF and this difference was statistically significant in Group I (p-value<0.001). 87.5% of parents in Group I had accepted the discoloration caused after dental treatment with SDF compared to 80% in Group II. In Group I, 95% of parents agreed strongly, while in Group II, 82.5% agreed strongly that SDF can be done on un-cooperative and special health care needs children. This difference in agreement seen between parents of Group I and Group II was found to be statistically significant (p-value=0.02). Also, the acceptance of SDF was found to be higher in parents who were educationally more qualified in Group I. This difference in the acceptance level of SDF seen based on the educational status of parents was statistically significant (p-value<0.001). Parental acceptance of SDF for dental treatment was higher in Group I (children with CP) as a greater number of parents accepted dental treatment despite discoloration with the modality being noninvasive and less time-consuming. Improved behavior rating was observed among children in both groups after dental treatment with SDF.

Development and Validation of a "Stress and Coping Assessment Tool Associated with Maintaining Oral Health among Children with Special Health-care Needs".

In our routine pediatric dental practice, many of us encounter parents and caretakers of Children with Special Health Care Needs (CSHCN) who complain about the difficulties they face in daily tooth brushing of their children. Some parents may have to accept defeat as their children face overwhelming medical conditions to cater to; ultimately leading to paradigm shift of oral hygiene leading to increase of dental caries and gingival problems. To develop and validate a comprehensive tool that can help us in assessing parent related stressors and coping factors with regard to maintenance of oral hygiene of their children. Data related to stress and coping factors encountered during maintenance of oral hygiene of their children and their experiences during the child's dental treatment (if any) were collected from parents of CSHCN. Validation and feedback from content evaluation panel experts were done. A comprehensive assessment tool with 45 items (29 stresses related items and 16 coping related items) was developed after validation. We could develop and validate a 'Stress and Coping Assessment Tool associated with maintaining Oral health among Children with Special health care needs' - abbreviated as "SCATOCS" with a hope to benefit and manage oral health care to the referred population.

Bridging the Distance: Improving Support for Rural Children With Special Health Care Needs.

Bridging the Distance: Improving Support for Rural Children With Special Health Care Needs.

The Lived Experience of Parents of Children and Youth With Special Healthcare Needs on Public and Private Insurance

The Lived Experience of Parents of Children and Youth With Special Healthcare Needs on Public and Private Insurance

Therapeutic hypothermia: A descriptive, cohort study conducted over 10 years at a tertiary care public hospital.

Introduction. Therapeutic hypothermia (TH) reduces the risk of death or disability in children with moderate to severe hypoxic ischemic encephalopathy (HIE). Objective. To describe a population of patients with HIE that required TH and their course until discharge. Population and methods. Retrospective, descriptive, cohort study. All patients admitted to TH between 2013 and 2022 were studied. Epidemiological, clinical, monitoring, and treatment data were assessed, together with supplementary tests and condition at discharge. Risk factors were compared between deceased patients and survivors; and, among the latter, those requiring special healthcare needs (SHCN) at discharge. Results. A total of 247 patients were included. Mortality: 11%. Most common sentinel event: prolonged second stage of labor (39%). Treatment initiation: median of 5 hours of life. Seizures: 57%. Intravenous erythropoietin: 66.7%. Abnormal pattern in brain function monitoring: 52%. Normalization of monitoring: median of 24 hours. Pathological magnetic resonance imaging: 42%. Predictor variables of mortality: severe Sarnat and Sarnat staging and pathological ultrasound upon admission. Conclusion. The overall mortality rate was 11%. Referrals increased more markedly since 2018. The time of TH initiation was later than in previous reports. Severe neurological signs as per the Sarnat and Sarnat staging and a pathological baseline cranial ultrasound were independent predictors of mortality at discharge. Patients with SHCN at discharge showed a normalized tracing in the amplitude-integrated electroencephalography performed later. The most common finding in the magnetic resonance imaging was basal ganglia involvement. No statistically significant differences were observed in terms of clinical characteristics or complications among patients who received erythropoietin.

Approach for Children with Special Healthcare Needs

Approach for Children with Special Healthcare Needs

Do Preventive Programs Reduce the Need for New Sedations for the Treatment of Oral Pathologies in Healthy and Special Health Care Needs Children?

Background: The goal is to analyze the need for reinterventions under deep sedation to treat oral pathologies in a population of children with special health care needs (SHCNs) and healthy children who followed a prevention program and to study the influence of parental motivation and child collaboration on the need for reinterventions under deep sedation. Methods: A retrospective study was carried out in a private clinic in Cartagena (Murcia, Spain), with patients treated under deep sedation from 2006 to 2018, both years included, following the Strobe statement. Results: In this study with 230 children who were treated under deep sedation, 23.92% underwent two or more sedations. The mean time elapsed between the first and the second sedations was 21.64 ± 15.87 months, and the main cause for reinterventions was the occurrence of new pathologies. Significantly more pulp treatments were performed in the first sedation than in the second (p = 0.013) and in the third (p = 0.007). Healthy children required fewer reinterventions under deep sedation than children with special needs (6.42% vs. 39.67%). Similarly, patients who followed the preventive program and required some type of dental treatment were reoperated fewer times than those who did not follow the preventive program (35.8 vs. 50%); than "cooperative" children as opposed to "non-cooperative" (12.12% vs. 60.93%) and than patients with "motivated" parents as opposed to those with "non-motivated" parents (20.83% vs. 46.34%). A total of 50% of the children who participated in the preventive program became "cooperative", and 100% were able to receive some treatment in the dental chair. Conclusions: Prevention programs, including motivational interviewing, are essential to improve children's behavior in the dental chair and reduce the need for reinterventions under general anesthesia or deep sedation. Although patients with special needs do require more sedation during their lifetime due to their inability to cooperate, these programs are necessary for the maintenance of oral health status and for the early diagnosis of caries lesions. Pediatric dentists should implement a quarterly preventive program because it improves patient collaboration. It is essential to achieve the motivation of parents in the oral care of their children.

The Use of Audiovisual Distraction Tools in the Dental Setting for Pediatric Subjects with Special Healthcare Needs: A Review and Proposal of a Multi-Session Model for Behavioral Management.

A Special Health Care Need (SHCN) is characterized by any type of physical, mental, sensorial, cognitive, emotional, or developmental condition that requires medical treatment, specialized services, or healthcare interventions. These conditions can negatively impact oral health as SHCN children can hardly cooperate or communicate and experience higher levels of dental fear/anxiety, which interfere with regular appointments. The present narrative review aims to analyze the use of audiovisual (AV) tools in dental setting for the management of SHCN children during dental treatment and to evaluate their effectiveness in anxiety/behavior control from the child, dentist, and care-giver perspectives. This analysis leads to the proposal of a new multi-session model for the behavioral management of SHCN pediatric subjects. An electronic search on the MEDLINE/Pubmed, Scopus, and Web of Science databases was carried out and through this analysis, a new model was proposed, the "UNISA-Virtual Stepwise Distraction model", a multi-session workflow combining traditional behavior management and the progressive introduction of AV media to familiarize the SHCN child with dental setting and manage behavior. AV tools helped in most cases to manage SHCN behavior and decreased stress in both the dentist and child during dental treatments. Care-givers also welcomed AV distractors, reporting positive feedback in using them during future treatments. The present narrative review found increasing evidence of the use of AV media for SHCN pediatric subjects as distraction tools during dental treatment. In the majority of the studies, AV tools proved to be effective for the management of anxiety, dental fear, and behavior in dental setting.

Countering the Identified Barriers to Delivered Oral Care for Children With Special Healthcare Needs: A Narrative Review.

Children with Special Health Care Needs (SHCNs) have poor oral health as a result of structural and systemic barriers. These children frequently have limited access to dental treatment, a higher prevalence and incidence of dental problems, and worse oral hygiene than the rest of the population.This review aims to offer an understanding of the existing oral care barriers of children with SHCNs. We reviewed the literature on children with SHCNs and their caregivers to identify the implications of the barriers faced by these individuals. Some of the perceived barriers to appropriate oral healthcare faced by these children include obstacles to adequate oral care and hygiene in the home, challenging behaviours, and limited preventive care and accessibility. We focussed on interventions and different management approaches to support the stakeholders responsible for these children. There is a need for strong communication as well as care coordination between caregivers, dentists, and other providers to achieve positive outcomes. The current dental healthcare system appears to desert the needed demands of this demographic.

SPECIAL CARE DENTISTRY FOR DEVELOPMENTALLY DISABLED CHILD

Special Care Dentistry (SCD) is a discipline focused on enhancing oral health for individuals with diverse impairments, including physical, sensory, intellectual, and medical conditions. It highlights the significant prevalence of disabilities in India and globally, as well as the complex nature of disability according to the WHO International Classification of Functioning. It discusses the extended lifespan of Children with Special Healthcare Needs (CSHCN) due to medical advancements, which necessitates tailored dental care to manage associated oral health challenges. Despite global efforts to improve oral health, disadvantaged and disabled populations continue to face disparities. It concludes by outlining the scope of a forthcoming library dissertation, which aims to review prevalent oral conditions among individuals with special needs and propose general care recommendations to address their unique challenges in accessing dental treatment.

Oral Health-related Quality of Life of Children with Special Health Care Needs in Riyadh: A Cross-sectional Study.

To assess children's OHRQoL and associated factors among a sample of children with special needs in Riyadh, Saudi Arabia. A sample of 6- to 12-year-old children was obtained using convenience sampling from rehabilitation centers. Data were collected through a questionnaire and dental examination. The questionnaire included items related to the children's and their families' characteristics, oral health-related quality of life scales (Parental-Caregivers Perceptions Questionnaire [P-CPQ] and Family Impact Scale [FIS]), perceived health status, and dental care utilisation. Clinical examination was performed by a trained and calibrated dentist. The data were analysed using SPSS; descriptive and inferential data analyses were also performed using SPSS. The mean P-CPQ was 1.10 ± 0.74, and the mean FIS was 1.39 ± 0.88. There was a statistically significant correlation between P-CPQ and caries (r = 0.36, p = 0.02). After controlling for confounders, caries was associated with poor P-CPQ (B = 0.06, p = 0.024). Compared to low-income families, higher-income families had better P-CPQ (4000-8000 SAR: B = -1.36, p = 0.001). Poor oral health-related quality of life in Saudi children is associated with caries and low income. Preventive measures addressing social determinants are vital to control caries and promote oral health in children with special health-care needs.

Caregivers' Perspective on Successful Health Care Transition Outcomes for Adolescents and Young Adults With Special Health Care Needs

PurposeThere is limited caregiver-reported evidence determining health care transition (HCT) outcomes for their adolescents/young adults with special health care needs (AYA-SHCN). A subcommittee of the International and Interdisciplinary Healthcare Transition Research Consortium aimed to identify multidimensional outcomes of a successful HCT among AYA-SHCN based on parents/caregivers' perspectives. MethodsAfter literature review and expert interviews, a three-stage Delphi process identified HCT outcomes based on parents/caregivers' perspectives. Participants were parents/caregivers of patients attending the Victory Junction Therapeutic Camp and a nationally representative sample from Cint Healthcare Digital Solutions Platform. The cumulative 272 responses collected on a Health Insurance Portability and Accountability Act-compliant web-based engine (Qualtrics) rated potential HCT outcomes by level of importance on a Likert scale from 1 (not important) to 9 (very important) and narrowed in subsequent iterations. ResultsThe Delphi process included 127 (Stage 1), 82 (Stage 2), and 63 (Stage 3) parents/caregivers. The initial 25 HCT outcomes were narrowed to 13, across four major domains: coping/satisfaction, behavioral, structural, and HCT/healthcare-focused outcomes. The top outcome was “My child takes their medications as prescribed.” Several traditionally considered important outcomes for HCT were eliminated. DiscussionThirteen HCT outcomes for AYA-SHCN were identified in four major domains: coping/satisfaction, behavioral, structural, and HCT/healthcare focused. Future research in larger samples would allow stratification to represent diverse patients and caregiver populations. Identifying international consensus-derived outcomes among parents/caregivers is imperative for the evaluation of HCT preparation strategies that ensure appropriate support for diverse AYA-SHCN and their families during this process and enable implementation of the most effective interventions.

The use of general anesthesia for dental treatment of children with special healthcare needs in Alberta, Canada.

Children with special healthcare needs (SHCN) often require specialized interventions due to their disabilities. Dental general anesthesia (DGA) is a treatment modality, which improves their access to care but concerns about repeated DGAs persist. This study investigated DGA utilization in children with SHCN and identified factors associated with multiple DGAs in Alberta, Canada (2010-2020). This retrospective population-based study used administrative data encompassing all children (<18 years) undergoing DGA in publicly funded facilities. Children were identified as SHCN based on their diagnosis codes and categorized into behavioral/psychiatric disorders, mental/intellectual disabilities, physical disabilities, systemic conditions, syndromes/congenital anomalies, physical-mental disabilities, and disabilities with medical conditions. This study analyzed 3884 DGA visits for children with SHCN, predominantly males aged 6-11 and from low-income families. Mental/intellectual disabilities were prevalent (31.8%), and autism was the leading disease. Caries was the primary dental diagnosis across all groups, whereas pulp problems were higher in psychiatric/behavioral disorders (23.6%), and periodontal problems were more common in physical-mental disabilities (13.2%). 28.7% had multiple DGAs, with younger age, disabilities with medical conditions, mental/intellectual disabilities, and initial pulp treatments, increasing the likelihood of multiple DGAs. This study highlights the importance of individualized prevention and less conservative treatments for younger children to reduce oral health disparities.

Focused Acceptance and Commitment Therapy Skills Training (FACT-ST) program for paraprofessionals serving families of children with special health care needs: A service evaluation study

Addressing mental health needs among parents of children with Special Health Care Needs (SHCN) requires improved access to effective interventions. This study assessed the satisfaction, skills implementation intention, and psychological flexibility of frontline paraprofessionals providing family and child rehabilitation services for families of children with SHCN in Hong Kong following participation in a Focused Acceptance and Commitment Therapy Skills Training (FACT-ST) program. The training program comprised two phases: an initial foundation training stage (i.e., the FT group), which provided theoretical instruction on ACT, and a subsequent supervised practice stage (i.e., the FT + SP group), during which participants were required to conduct at least three video-conferencing FACT sessions with parents of children with SHCN under supervision. A diverse sample of 317 paraprofessionals participated, with 246 completing the foundation training and an additional 71 completing both training phases. The FACT-ST program was positively received, as indicated by high average client satisfaction questionnaire scores. In the FT + SP group, paired sample t-test indicated that the mean total skills implementation intention score remained consistent at the 3-month follow-up (M = 36.65, SD = 7.56) when compared to the 2-week follow-up (M = 36.00, SD = 8.28, P = 0.063). Repeated measures analysis of covariance showed significant improvements in psychological flexibility from baseline to the 3-month follow-up in both the FT (F = 57.57, P = < 0.001, ηp2 = 0.20) and the FT + SP groups (F = 19.06, P = < 0.001, ηp2 = 0.24). Qualitative feedback highlighted the utility of live demonstrations, experiential exercises, and collaborative interactions during training. Our findings are one of the first affirming both the feasibility and acceptability of the FACT-ST program for paraprofessionals working with parents of children with SHCN. The findings underscore the potential of paraprofessionals to become crucial contributors to the mental health care system, addressing service gaps within the community.

Medical Complexity of Children with Special Healthcare Needs and Healthcare Experiences.

The rising prevalence of CSHCN has led to significant challenges for caregivers, particularly mothers, who face difficulties from caregiving demands and managing complex healthcare interactions. The objective of this study was to examine the association between the medical complexity of CSHCN and the healthcare experiences of their mothers while exploring the influence of sociodemographic factors on these associations. The study utilized data from the 2016-2020 National Survey of Children's Health (NSCH), involving 17,434 mothers of CSHCN. Mothers provided information on the medical complexity of CSHCN, healthcare experiences (care coordination, family-centered care, and shared decision-making), and sociodemographic information (race, community, insurance, child sex, age, and federal poverty level). Results from multiple regressions revealed that greater medical complexity was associated with more negative healthcare experiences. Minoritized mothers, those in rural areas, and families with lower income reported lower levels of family-centered care, indicating significant disparities. Additionally, the negative association between medical complexity and healthcare experiences was pronounced for White families and those with private insurance compared to minoritized families and those with public insurance. This study highlights the necessity for targeted interventions to improve care coordination, family-centered care, and shared decision-making, emphasizing the need for a comprehensive, family-centered approach to address healthcare disparities and promote health equity for CSHCN and their families.

Experiences of patients, parents, and healthcare professionals in the process of transitioning from hospital to community after inpatient pediatric rehabilitation among children with special health care needs

Purpose Children with Special Health Care Needs (CSHCN) may experience disruptions in education due to extended hospitalizations. The purpose of this study was to describe how CSHCN experience educational supports during inpatient rehabilitation and identify the ongoing challenges when planning to return to school. Materials and methods Semi-structured focus groups were conducted with parents (n = 12), former patients (n = 20), and rehabilitation professionals (n = 8). Results Through qualitative thematic analysis based on descriptive phenomenology, we developed three themes: 1) Inpatient educational support such as instruction and schoolwork helped reduce the learning loss during hospitalization. However, these supports were sometimes complicated by lags in school approvals and challenges in coordination between systems. 2) Transition planning involved establishing necessary services to support CSHCN’s educational and healthcare needs at school re-entry. However, families reported limited information and guidance as key barriers. 3) Dynamic courses of school re-entry required continued support after discharge. The participants recommended that reassessment and adjustment of transition plans were often necessary to account for evolving developmental and educational needs but were not always received. Conclusions There is an ongoing need to improve communication between clinicians and educators, information for families, and long-term follow-up on the changing educational needs for CSHCN after rehabilitation.

A Virtual Home Preparedness Intervention Centered on Children and Youth With Special Health Care Needs

ObjectiveChildren and youth with special health care needs (CYSHCN) require additional considerations for staying safe in emergencies. Our team of clinicians and preparedness professionals developed and tested a virtual home preparedness intervention (VHPI) in families with CYSHCN receiving care in a statewide medical home network. MethodsThe VHPI comprised 1) a pre/post interview covering fire safety, emergency evacuation, sheltering in place, and informing emergency responders of the child/youth’s care needs; 2) a resource packet containing emergency planning templates and information on local supports; and 3) individualized referrals coordinated through the medical home/community partners. Eligible CYSHCN had medical technology reliance, physical/mobility needs, communication/intellectual challenges, and/or vision/hearing loss. Preparedness was measured as pre/post affirmed rates of 19 items from the interview and as mean composite scores of these items; associations were evaluated using generalized estimating equations–based regression for repeated measures. ResultsThe pre- and post-VHPI interviews were completed by 170 and 148 participants, respectively. Significant individual-item gains included having a current Emergency Information Form for the child/youth (31% [pre] to 47% [post] affirmed) and assembling an evacuation kit (50% to 68%). The mean preparedness score was 13.33/19 items affirmed at baseline and increased to 14.96 post-VHPI (P < .01). In the adjusted regression model, the post-intervention preparedness score remained significantly higher than pre-VHPI, with mean increases of 1.22 preparedness steps affirmed for homeowners and 1.85 for renters. ConclusionsPreparedness scores improved post-VHPI in families with CYSHCN. Future work should address incorporating the VHPI into care visits in the medical home.

Outcomes of nonsurgical endodontic treatment under general anesthesia in special health care needs: An observational study

Background and aimThe alarming rise in the number of people with special health care needs (SHCNs) necessitates a paradigm shift in how to approach their oral health needs. General anesthesia (GA) is a valuable technique for facilitating dental procedures in patients with SHCNs who may not be able to tolerate treatment without it. The aim was to assess nonsurgical endodontic treatment and outcomes in patients with SHCNs performed under GA.MethodSeventy-eight permanent teeth in 33 patients who received nonsurgical endodontic treatment under GA were included between 2018 and 2022 in SHCNs hospital clinics. The demographic data, types of SHCNs, pulpal and periapical diagnosis, type of treatment, and material used were analyzed. All patients were recalled for clinical and radiographic examinations. Pre-treatment and recall periapical radiographs were evaluated and scored using the Periapical Index (PAI).ResultsAutism and Attention deficit hyperactivity disorder were 39.4% of patients treated. Most treatments delivered were primary nonsurgical root canal treatment (95%). Warm vertical compaction of gutta-percha for obturation accounted for 88% of cases treated. Single cone obturation technique was used in 9 cases (12%) utilizing tricalcium silicate sealer. At the recall visits, 98.7% of teeth treated had survived. Twelve teeth have pre-treatment periapical lesions, and all healed except one. Female patients were found to have higher scores of PAI compared to male patients (23.7% vs 7.5%), yet insignificant. Only 10 patients with nonsurgical root canal treatment reported recurrent caries.ConclusionThis study demonstrates a high survival rate for nonsurgical endodontic treatment performed under GA in a cohort of patients with SHCNs. Interestingly, patients with social and communication disorders received the highest proportion of treatments under GA. These findings highlight the potential of GA-facilitated endodontics for this population. However, further research is warranted to explore additional methods for optimizing oral health outcomes in SHCNs.

Association between more complex special care needs and overweight status and adolescents' difficulty with dental caries.

Little is known about dental caries experience in adolescents with overweight and complex special health care needs (SHCNs). Adolescent data (10-17 years) from the 2016-2020 National Survey of Children's Health (n = 91,196) was analyzed. The sample was grouped into the following: more complex SHCN and overweight, more complex SHCN without overweight, less complex SHCN and overweight, less complex SHCN without overweight, no SHCN but with overweight, and neither SHCN nor overweight. A multivariable-adjusted logistic regression model was conducted. Adolescents with more complex SHCNs with (OR: 1.82, 95% CI: 1.44-2.30, p < 0.001) or without overweight (OR: 1.51, 95% CI: 1.30-1.76, p < 0.001) were at higher odds of experiencing dental caries compared to healthy adolescents. No significant associations were observed between adolescents with less complex or no SHCN regardless of the overweight status with healthy adolescents. Adolescents with more complex SHCNs, irrespective of overweight status, experienced a higher caries severity than adolescents with no SHCNs or overweight.