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OBJECTIVE: Prior studies and have shown that gaps in care coordination (CC) increase the risk of emergency department (ED) visits among children with special healthcare needs. This study aims to determine if gaps in CC are associated with an increased risk of ED visits among children without special needs (non-CSHCN). STUDY DESIGN: We conducted a cross-sectional study using the National Survey of Children's Health (2018-2019), representing children up to age 17. A "gap" in CC occurs if the adult proxy reported dissatisfaction with communication between providers or difficulty getting the help needed to coordinate care for the child. Using logistic regression models adjusting for age and sex, we measured the association between a gap in CC and 1 or more ED visits during the past 12 months overall and stratified by any special needs. Adjusted odds ratios (AOR) and 95% confidence intervals (95% CI) were calculated. RESULTS: Between 2018 and 2019, 15% of respondents reported a gap in CC and 19.4% of children had at least one ED visit. Among non-CSHCN, these rates were 11% and 17%. In this population, a gap in CC was independently associated with an increased odds of ED use (AOR: 2.14; 95% CI 1.82, 2.52). CONCLUSIONS FOR PRACTICE: Self-reported gaps in ambulatory CC were associated with increased odds of ED visits even among non-CSHCN children with minor illnesses, suggesting that providers need to be aware of potential pitfalls in CC for all children, and ensure that pertinent information is available where needed.
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Serviço Hospitalar de Emergência , Humanos , Serviço Hospitalar de Emergência/estatística & dados numéricos , Feminino , Masculino , Estudos Transversais , Criança , Adolescente , Pré-Escolar , Lactente , Doença Crônica , Continuidade da Assistência ao Paciente/estatística & dados numéricos , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Recém-Nascido , Visitas ao Pronto SocorroRESUMO
Dental care accessibility is subject to a dentist's qualification, practice and intention to treat patients, regardless of whether those patients have special healthcare needs (SCN) and should receive treatment in a dental setting. This multicentre study aimed to evaluate the characteristics of patients with SCN, their access to dental care and behaviour towards dental care from their caregiver's perspective. In addition, the perspective of dental care providers who care for patients with SCN and the factors affecting the provision of treatment was also appraised. The Eastern Province of Saudi Arabia served as the site of this cross-sectional study from 1 February 2020 to 31 January 2022. Caregivers of 272 patients with SCN, regardless of age and gender, were recruited in the study. The caregiver's proforma sought information on the demographic characteristics, type of disability, cooperation, medical history, occupation of the parent and patient's behaviour towards oral hygiene and dental healthcare. The second proforma had the dental care provider's perspective about the common disabilities, factors that affect the decision to provide treatment, difficulties patients face in getting their dental treatment and, from the dentist's experience, recommendations to improve the access to dental care for patients with SCN. Statistical analysis was carried out by using SPSS version 22.0. The demographic features, caregiver's perception about oral healthcare accessibility and dental professional's point of view were presented as frequencies and percentages. Chi-square test was applied to compare the proportions. The majority of the caregivers were satisfied with the dental service providers (91.9%) for their patients with SCN. The dental care provider's survey results indicated a shortage of dentists (54.7%) in the region and other factors that pose challenges to special care, like the severity of the disability of patients with SCN (50%), family structure (46.7%), treatment cost (35.6%) and transportation (32.8%). Patients with SCN in Saudi Arabia had a high appraisal of access to dental care and were very satisfied with dental treatment results. However, the presence of a dental care provider in the same rehabilitation centre was a major concern. The severity of the disability and the patient's cooperation were the major factors that may have affected the decision of the dental care provider.
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Cuidadores , Assistência Odontológica , Acessibilidade aos Serviços de Saúde , Humanos , Arábia Saudita , Masculino , Feminino , Cuidadores/psicologia , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Adulto , Estudos Transversais , Assistência Odontológica/estatística & dados numéricos , Pessoa de Meia-Idade , Adolescente , Adulto Jovem , Assistência Odontológica para a Pessoa com Deficiência , Inquéritos e Questionários , Pessoas com Deficiência , Idoso , Criança , Odontólogos/psicologiaRESUMO
BACKGROUND: 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. AIM: This study investigated DGA utilization in children with SHCN and identified factors associated with multiple DGAs in Alberta, Canada (2010-2020). DESIGN: 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. RESULTS: 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. CONCLUSION: This study highlights the importance of individualized prevention and less conservative treatments for younger children to reduce oral health disparities.
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BACKGROUND/AIM: Children with special healthcare needs (CSHCN) often face oral health challenges. This retrospective cross-sectional study at a university hospital aimed to determine CSHCN's medical spectrum, dental treatment needs, and mode of treatment: general anesthesia (GA) or outpatient dental care (ODC). DESIGN: Data from the Department of Conservative Dentistry, Heidelberg University Hospital, 2012-2022, were reviewed, considering age, gender, International Classification of Diseases-10 diagnoses, caries experience (dmft/DMFT), restorative parameters, and treatment under GA/ODC. For patients under GA, their American Society of Anesthesiologists (ASA) classification was considered. Descriptive statistics, Kruskal-Wallis test, Mann-Whitney U-test and logistic regression were utilized. RESULTS: Of 669 patients, congenital and chromosomal malformations (34.7%), diseases of the nervous system (19.1%), and mental and behavioral disorders (16.0%) were mainly diagnosed. Dentin caries prevalence was high at 79.1%, with treatments performed mainly under GA (51.4%). The odds of receiving treatment under GA decreased with patient age and increased with higher dmft/DMFT scores. Most under GA were classified as ASA 3 (51.7%), indicating high anesthesia risks. CONCLUSION: Children with special healthcare needs often have diseases that can lead to higher challenges related to cooperation. The high prevalence of dentin caries underscores the substantial need for dental treatments, which were consequently often performed under GA, despite the associated risks. These findings stress the need for trained dental professionals.
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Assistência Odontológica para Crianças , Assistência Odontológica para a Pessoa com Deficiência , Cárie Dentária , Humanos , Estudos Retrospectivos , Criança , Masculino , Feminino , Estudos Transversais , Pré-Escolar , Assistência Odontológica para a Pessoa com Deficiência/estatística & dados numéricos , Assistência Odontológica para Crianças/estatística & dados numéricos , Adolescente , Cárie Dentária/terapia , Cárie Dentária/epidemiologia , Anestesia Geral/estatística & dados numéricos , Alemanha/epidemiologia , Crianças com Deficiência/estatística & dados numéricos , LactenteRESUMO
BACKGROUND: Children and adolescents with social pediatric care needs represent a group with special challenges. The aim of this qualitative study was to describe social pediatric care during the pandemic from the perspective of experts. From this, conclusions were to be drawn for any social pediatric care needs that may have arisen. METHODS: Between May and November 2022, 25 experts from the field of social pediatrics were interviewed using guided interviews on the following topics: deviations in care, utilization behavior of families, individual burdens and resources, and sustainable needs. The interviews were analyzed by two research assistants. RESULTS: Overall, the social pediatric care offer was temporarily clearly limited. While families who were already well connected before the pandemic could be adequately cared for with the help of telephone/video contacts, an unreported number of at-risk groups, were described, for example, those with low competence to act, who did not make use of services or did so with delays. It was observed that there was a need for care for newly developed mental disorders and regression in therapy due to limited opportunities for support, as well as a need to catch up on missed opportunities for early support in the case of developmental disorders. DISCUSSION: To meet the needs that have arisen, underserved families should be identified and cared for promptly, taking individual characteristics into account. To this end, for example, more outreach services should be established that reach affected families unbureaucratically.
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COVID-19 , Adolescente , Humanos , Criança , COVID-19/epidemiologia , Pandemias , Alemanha/epidemiologia , Pesquisa QualitativaRESUMO
While family engagement at the individual level of health care, such as families partnering with providers in decision-making about health care for an individual child has been well studied, family engagement in systems-level activities (e.g., participation in advisory and other decision-making groups, or creation and revision of policies) that impact the health services families and children receive has not. This note from the field presents a framework that describes the information and supports that help families partner with professionals and contribute to systems-level activities. Without attention to these components of family engagement, family presence and participation may be only token. We engaged an expert Family/Professional Workgroup whose members represented key constituencies and diverse geography, race/ethnicity, and areas of expertise; conducted a review of peer-reviewed publications and grey literature; and conducted a series of key informant interviews to identify best practices for supporting meaningful family engagement at the systems level. Based on an analysis of the findings, the authors identified four action-oriented domains of family engagement and key criteria that support and strengthen meaningful family engagement in systems-level initiatives. Child- and family-serving serving organizations can use this Family Engagement in Systems framework to support meaningful family engagement in the design of policies, practices, services, supports, quality improvement projects, research, and other systems-level activities.
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Atenção à Saúde , Família , HumanosRESUMO
BACKGROUND: Little is known about the strategies utilized by family caregivers managing medications for their children with special healthcare needs (CSHCN), those who require higher than normal care due to their multifaceted healthcare needs. Medication management strategies are a set of methods or techniques developed or adapted by caregivers to overcome medication-related barriers and ensure successful therapeutic outcomes. An in-depth understanding of such strategies is a requisite first step toward developing interventions that support caregiver-mediated medication management. METHODS: We conducted semi-structured qualitative interviews with 20 family caregivers of CSHCN who were recruited as part of a community engaged research between Purdue University College of Pharmacy and Indiana Family to Family. Interviews were conducted through zoom and audio recorded. Each participant was provided with a $50 honorarium. Interviews were professionally transcribed and content analyzed to generate categories of medication management strategies. RESULTS: Five overarching categories of medication management strategies were identified. These included (1) medications, supplies and equipment inventory management; (2) organizing and tracking medications, supplies and equipment; (3) medication-related communication, coordination and engagement; (4) medication administration and (5) researching and learning about medications. Within each category, caregivers developed or adapted specific strategies to overcome barriers in diverse care contexts (e.g., when interacting with healthcare systems, school staff or other members of their household). CONCLUSION: These findings can inform current clinical practice through improved awareness of different strategies employed by caregivers and lay a foundation to develop interventions designed to support caregiver mediated medication management.
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Cuidadores , Conduta do Tratamento Medicamentoso , Humanos , Criança , Atenção à SaúdeRESUMO
OBJECTIVES: Aim of this retrospective study was to examine the influence of general medical, demographical, and other patient-specific factors on the need for dental treatment under general anesthesia in children and adolescents at Saarland University Hospital. For assessment of the clinical treatment need, a mixed dt/DT (decayed teeth) was introduced. MATERIALS AND METHODS: A total of 340 patients under 18 years of age who received restorative-surgical dental treatment between 2011 and 2022 were anonymously enrolled. Demographic and other patient-specific data, general medical health, oral health, and treatment related data were recorded. In addition to descriptive analysis, Spearman-Rho-test, Mann-Whitney-U-test, Kruskall-Wallis-test and Chi-square-test were used. RESULTS: More than half of the patients (52,6%) were in general health, but non-cooperative. The majority of the patients (66.8%) was between 1 and 5 years of age (p < 0,001). Mean dmft was 10.95 ± 4.118, mean DMFT was 10.09 ± 7.885, and mean dt/DT was 10.79 ± 4.273. Analysis showed that communication difficulties significantly influenced dmft (p = 0.004), DMFT (p = 0.019), and dt/DT (p < 0.001). Type of insurance significantly affected dmft (p = 0.004) and dt/DT (p = 0.001). There was no significant effect of ASA on caries experience, however on prevalence of severe gingivitis (p < 0.001), number of extractions (p = 0.002), and need for repeated treatment (p < 0.001). CONCLUSIONS: Need for dental treatment in the present collective was high, independent of the considered variables. Non-Cooperativeness along with ECC was the main indication for dental general anesthesia. The mixed dt/DT was the most precise survey to evaluate clinical treatment needs. CLINICAL RELEVANCE: Given the enormous demand for these rehabilitations with strict selection, it is imperative to create more treatment capacities for patients mandatorily requiring general anesthesia by avoiding it in healthy patients.
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Cárie Dentária , Humanos , Criança , Adolescente , Cárie Dentária/terapia , Cárie Dentária/epidemiologia , Estudos Retrospectivos , Assistência Odontológica , Nível de Saúde , Anestesia Geral , Prevalência , Índice CPORESUMO
PURPOSE: The purpose of this study was to gather descriptions from caregivers and providers of children with special healthcare needs (CSHCN) about their experiences with community reintegration. This study focused on three community support areas: the healthcare structure, community of support, and school systems. The research question was, "How do caregivers and providers of CSHCN describe reintegration into community-based systems?" METHOD: This descriptive qualitative study used focus group design to interview caregivers and providers about their experiences. Data were analyzed using conventional content analysis with open coding, clustering into categories, and abstracting into themes. RESULTS: Eight themes were found within three categories. 1. Planning life and caregiving while fighting for everything needed, 2. Deciding to seek help while living with stigma, shame, and fear, 3. Coping with caregiving while feeling isolated, stressed, and overwhelmed, 4. Arranging transportation while living far away, 5. Underwhelming support in community and school systems, 6. Managing finances and covering expenses, 7. Improving communication of complex needs, and 8. Building a community, increasing confidence, and providing hope. CONCLUSION: Community reintegration was described by caregivers and providers as balancing responsibilities, securing resources, and facilitating collaboration, which offer guidance for future care. IMPLICATIONS: Engaging in open dialogue structured by the themes can help nurses understand the unique needs of caregivers of CSHCN. Social policy reform focused on access to care, financial resources, and school support may reduce inequities, and additional research focused on community-based systems, coping, and caregiving may identify needs based on sociodemographics and existing resources.
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Cuidadores , Necessidades e Demandas de Serviços de Saúde , Criança , Humanos , Grupos Focais , Pesquisa QualitativaRESUMO
PURPOSE: The purpose of this study was to understand the experiences of parents and caregivers of children with special healthcare needs during the COVID-19 pandemic. DESIGN AND METHODS: In this descriptive phenomenological study, the researchers used purposive and snowball sampling to recruit nineteen participants, ranging in age from 21 to 55 years of age until saturation was established. Colaizzi's method guided data analysis. Iterative examination of the interview transcripts, an audit trail, bracketing, and validation of findings with a subset of participants established trustworthiness. RESULTS: Navigating the COVID-19 Pandemic was the overarching theme. Four major themes emerged under Navigating the COVID-19 Pandemic as follows: Disruptions in Daily Life, Shifts in Daily Life, Innovations in Daily Life, and Surprising Silver Linings. CONCLUSION: This study elucidated an in-depth understanding of the positive and negative impacts of the pandemic on the lives of families living with a child with special needs. The COVID-19 pandemic profoundly affected families and parenting approaches. Parents of children with special healthcare needs in this study found day-to-day living especially difficult in similar and unique ways. For virtually all parents the pandemic added new challenges in meeting their child's physical, mental, social, and educational needs. Parents and caregivers revealed innovative ways of maintaining a sense of normalcy during the height of the pandemic. PRACTICE IMPLICATIONS: These findings demonstrate the importance of developing interventions and creating public health policies as we move beyond the current pandemic and plan for potential outbreaks in the future.
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COVID-19 , Pandemias , Criança , Humanos , Adulto Jovem , Adulto , Pessoa de Meia-Idade , COVID-19/epidemiologia , Pais , Poder Familiar , Necessidades e Demandas de Serviços de SaúdeRESUMO
There is a well-established correlation between health and adverse childhood experiences (ACEs). Arguments have been made to expand ACE scales to include indicators of racism and structural inequalities. In this paper, we use nationally representative data to examine the relationships between latent groups of an expanded adversity scale and a broad range of child health outcomes. Data were obtained from a merger of the 2017 and 2018 National Survey of Children's Health (NSCH) and analyzed in 2021 (n = 52,129). Adversities were defined as violent victimization, violence exposure, a range of parental problems, racial discrimination, food insecurity, and unkempt housing. Latent class analysis (LCA) was used to uncover emergent groups of adversities, and logistic regression was used to assess group relationship to global and diagnosed measures of health. Four groups emerged: high all (3.6%), material and food hardship (11.9%), parental problems (10.3%), and low all (74.2%). Results showed the high all groups at greater odds of almost all outcomes. Compared to low all group, high all had particularly higher odds of any special (OR = 2.29) or complex (OR = 2.53) healthcare need, frequent severe headaches (OR = 2.07), and depression (OR = 3.4) or anxiety (OR = 2.11). Our analysis noted separation of experiences based on additional items related to structural inequalities: food insecurity, poverty, and unkempt housing. However, augmenting existing ACE scales with these indicators may be unnecessary as children most at-risk for poor health were a very small group (1 in 28) that experienced multiple forms of violence and parental problems.
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Experiências Adversas da Infância , Exposição à Violência , Racismo , Criança , Família , Humanos , PobrezaRESUMO
OBJECTIVES: (1) Explore the relationship between various sociodemographic factors and caregiver health beliefs (CHBs), and (2) examine whether these relationships were associated with the use of pediatric therapy services. METHODS: We conducted a cross-sectional, secondary data analysis using the 2011 Survey of Pathways Diagnosis and Services dataset. 4,032 children ages 6-17 years had complete data on caregiver health beliefs and pediatric therapy use. Select CHBs reflected whether caregivers believe (1) problems related to their child's condition can be prevented or decreased with treatment, (2) they have the power to change their child's condition, and (3) their child's condition is a mystery. Pediatric therapy included physical therapy, occupational therapy, and speech therapy. We performed multivariate logistic regression to test the associations between CHBs and select child and family characteristics (Aim 1) and use of pediatric therapy services (Aim 2). RESULTS: Caregivers with lower educational attainment were more likely to believe their child's condition was a mystery and less likely to believe they had the power to change their child's condition. Use of pediatric therapy services tended to be lower among children whose caregivers believed they had the power to change their child's condition and higher among children whose caregivers believed their child's condition was a mystery. CONCLUSIONS FOR PRACTICE: Our findings add to existing research that suggests CHBs differ across groups of caregivers. This, combined with the recognition that CHBs also likely differ from providers, underscores the importance of eliciting caregiver beliefs, values, and priorities to help ensure the provision of truly family-centered care. SIGNIFICANCE: Pediatric therapy services support and optimize child development. Significant service use disparities exist, however, with children representing various marginalized groups being less likely to use pediatric therapy services. Little is known about the mechanisms underlying such disparities. We sought to explore the relationship between family sociodemographic factors, caregiver health beliefs, and pediatric therapy use. Our findings suggest that caregivers with fewer socioeconomic resources expressed beliefs that are consistent with limited knowledge and agency regarding their child's condition. Thus, providers must work to engage families in conversations about their child's development, elicit their knowledge and beliefs, and identify social or financial barriers to care.
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Cuidadores , Serviços de Saúde da Criança , Criança , Humanos , Adolescente , Estudos Transversais , Fatores Socioeconômicos , Atenção à SaúdeRESUMO
OBJECTIVES: To understand the role of adverse child experiences and breadth of participation in the mental health outcomes of youth with special healthcare needs (YSHCN). Breadth of participation refers to the number of different activity contexts within which YSHCN participate. METHODS: The present, cross-sectional, study utilized the 2016 National Survey of Children's Health, a nationally representative survey of the physical and emotional health of children in the United States. In total, 5862 YSHCN, aged 12-17 years were included in the sample. RESULTS: Increased exposure to adverse childhood experiences was associated with an increased risk of both depression and anxiety for YSHCN. Low (versus high) breadth of participation was associated with an increased risk of both depression and anxiety. Breadth of participation altered the association between exposure to adverse childhood experiences and anxiety, such that YSHCN with high breadth of participation had lower rates of anxiety at all levels of exposure to adverse childhood experiences. CONCLUSIONS FOR PRACTICE: YSHCN with greater exposure to adverse childhood experiences and with low breadth of participation may be most vulnerable to depression and anxiety.
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Experiências Adversas da Infância , Saúde Mental , Adolescente , Transtornos de Ansiedade , Criança , Estudos Transversais , Atenção à Saúde , Humanos , Estados Unidos/epidemiologiaRESUMO
OBJECTIVES: We assessed how shared plans of care (SPoC), a care coordination tool, impact healthcare utilization of a cohort of children with special healthcare needs (CSHCN) and mental health conditions. METHODS: Data, including emergency department (ED) visits, hospitalizations, and primary care visits, were collected through chart review of CSHCN. A Poisson generalized linear mixed model was used to analyze healthcare utilization data for CSHCN. RESULTS: Our results showed a decrease in primary care visits, hospitalizations, and ED visits for CSHCN after SPoC implementation, though only primary care visits reached significance. Mental health care visits were specifically found to decrease by 39% following employment of SPoC. CONCLUSIONS FOR PRACTICE: The use of SPoCs in CSHCN had a positive impact on healthcare utilization suggesting widespread use of this tool improved care coordination in this population.
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Serviços de Saúde da Criança , Crianças com Deficiência , Criança , Serviço Hospitalar de Emergência , Necessidades e Demandas de Serviços de Saúde , Humanos , Saúde Mental , Aceitação pelo Paciente de Cuidados de Saúde , Atenção Primária à Saúde , Estados UnidosRESUMO
PURPOSE: Approximately 25% of adolescents and young adults (AYA) have special healthcare needs. Transitioning from a pediatric to an adult model of healthcare is an important event but most AYA with special health care needs and their families do not receive the preparation and support they need to transition to adult care. The purpose of this scoping review was to determine how AYA use the internet for health-related information. METHODS: Three databases were used CINAHL, Medline and PsycINFO with search terms including adolescent, young adult, chronic illness, internet, social media. Inclusion criteria were articles focused on AYA (16-25), use of internet or social media for health-related information, published in English between 2005 and 2020. Initial search yielded 369 articles, 335 were eliminated as not meeting the inclusion criteria. FINDINGS: Of the 34 remaining, 14 were eligible for inclusion. AYA used the internet for health concerns, socializing, entertainment, homework, general information, and shopping. AYA expressed concerns about disclosing personal health information and potential misinformation on websites. Few used it to look up their diagnosed condition or talk to illness peers. AYA report they also get information from non-internet sources like providers, parents, and peers. CONCLUSIONS: AYA have a need for health-related information. When planning online resources critical issues include perceived threats to privacy and security and quality of information. Online resources must address these issues so AYA consumers can have confidence in their website.
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Uso da Internet , Mídias Sociais , Adolescente , Criança , Doença Crônica , Humanos , Internet , Comportamento Social , Adulto JovemRESUMO
BACKGROUND: Children with intellectual and developmental disabilities (IDD), particularly those with medical complexity, account for a large proportion of pediatric inpatients and are increasingly surviving to adulthood. However, few studies have evaluated the inpatient care of this population after transition to adult hospitals. This paper describes a Med-Peds Hospitalist service providing inpatient consultation for young adults with childhood conditions and offers a window into issues likely to be faced by young adults with IDD as they face increased admissions to adult hospitals. METHODS: A single center retrospective chart review was performed of adults with intellectual and developmental disabilities referred to the Med-Peds consult service at a large urban adult academic medical center. FINDINGS: The most common medical recommendations provided focused on diagnosis and management of gastrointestinal, neurologic, and respiratory issues. Coordination between pediatric and adult caregivers, disposition planning, communication and family support, and guidance on weight-based dosing were also commonly provided services. DISCUSSION: Young adults with IDD face new challenges when admitted to adult hospitals. In this single-center study, several areas were identified where expert consultation could be helpful. The need for structured coordination of care for this vulnerable patient population was highlighted. Knowledgeable consultative services may be an effective intervention to address the unique needs of hospitalized young adults with IDD. APPLICATION TO PRACTICE: Hospitals should consider structured inpatient programs, care-paths, or consultation from providers knowledgeable in the care of young adults with intellectual disabilities in order to improve the inpatient care of this population.
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Pacientes Internados , Deficiência Intelectual , Adulto , Criança , Deficiências do Desenvolvimento/diagnóstico , Deficiências do Desenvolvimento/terapia , Humanos , Deficiência Intelectual/diagnóstico , Deficiência Intelectual/terapia , Encaminhamento e Consulta , Estudos Retrospectivos , Centros de Atenção Terciária , Adulto JovemRESUMO
PURPOSE: Nearly 20% of U.S. children have special healthcare needs (CSHCN). Difficulties experienced with navigating the array of services for these children has highlighted the value of care coordination to improve care, reduce costs and increase satisfaction. This study evaluated the services delivered within a care coordination program at a transition consultation center for CSHCN. It also compared the advancement of youth by age group toward graduation criteria. DESIGN AND METHODS: Using a program evaluation method, data were collected via a retrospective chart review. The convenience sample included clinical records from 100 patients aged 11-22 who had a chronic disease or disability. RESULTS: The comparison of services for those with diagnoses of autism spectrum disorder, cerebral palsy and Down syndrome were uniformly high in supporting primary care and health care financing. Medicaid waiver assistance was provided more frequently to younger adolescents while older adolescents more commonly received support in all other graduation criteria, including primary and specialty care, healthcare financing and decision-making supports. CONCLUSIONS: Youth served in a transition care coordination program receive a high volume and broad array of services. There are some variations in the types of services by diagnosis and level of support need. Older youth show greater advancement toward graduation criteria. PRACTICE IMPLICATIONS: This in-depth chart review provides a valuable description of the activities of care coordinators serving CSHCN enduring transition. It enables development of targeted strategies for building care coordination programming and sets an example for the design of future research studies on this topic.
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Transtorno do Espectro Autista , Serviços de Saúde da Criança , Crianças com Deficiência , Adolescente , Criança , Atenção à Saúde , Necessidades e Demandas de Serviços de Saúde , Humanos , Avaliação de Programas e Projetos de Saúde , Estudos Retrospectivos , Estados UnidosRESUMO
Mothers of children with special healthcare needs often face many extra difficulties, such as being isolated in the community. This study, conducted in the San'in region of Japan between December 2017 and February 2019, aimed to clarify how the mothers established and adapted their connections within their communities through a qualitative descriptive design study. Participants were 12 mothers caring for children with special healthcare needs. Verbatim data on adapting to life after hospital discharge was collected through interviews and analyzed by the modified grounded theory approach. The data generated 14 concepts, which were grouped into four categories, as follows: Difficulties in life that arise from caring for children in social isolation; gaining an objective view of the current situation and future of caring for children with special healthcare needs; collaboration based on the understanding of relationships with others; and feeling fulfilled in life. These describe four phases that the mothers went through which are similar to each stage of the transition theory. Providing support via a collaborative partnership may be effective for mothers experiencing anxiety during the transition stages.
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Atenção à Saúde , Mães , Feminino , Teoria Fundamentada , Humanos , Japão , Pesquisa QualitativaRESUMO
OBJECTIVE: To characterize the association of birth weight with parent-reported special healthcare needs (SHCN) and unmet healthcare needs among children born prematurely. STUDY DESIGN: We analyzed data from the 2016-2017 National Survey of Children's Health. Prematurity, birth weight, SHCN, and unmet healthcare needs were reported for one child per participating household. We analyzed children age 0-5 years, and classified birthweight among children born preterm as very low birth weight (VLBW, <1500 g), low birth weight (LBW, 1500-2500 g), and normal weight (NBW, >2500 g). Term-born NBW children were included as a reference group. RESULTS: The analysis included 190 VLBW preterm, 688 LBW preterm, 884 NBW preterm, and 15 629 NBW term-born children. Weighted SHCN prevalence was 10%, and 1% had unmet healthcare needs. On multivariable analysis, children born preterm and VLBW had significantly higher odds of SHCN compared with NBW term-born children (OR, 9.8; 95% CI, 4.9-19.6). Preterm LBW and NBW preterm groups had smaller increases in SHCN odds (OR, 2.5 and OR, 1.6, respectively). The odds of unmet healthcare needs did not differ among the 4 study groups. CONCLUSIONS: Among children under 5 years of age, preterm birth and VLBW are associated with very high likelihood of SHCN, compared with LBW/NBW preterm or NBW term-born children. However, requirements for additional health services in this group were adequately met, according to caregiver report.
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Peso ao Nascer , Deficiências do Desenvolvimento/epidemiologia , Doenças do Prematuro/epidemiologia , Cuidadores , Pré-Escolar , Interpretação Estatística de Dados , Bases de Dados Factuais , Feminino , Inquéritos Epidemiológicos , Humanos , Lactente , Recém-Nascido de Baixo Peso , Recém-Nascido , Recém-Nascido Prematuro , Doenças do Prematuro/diagnóstico , Recém-Nascido de muito Baixo Peso , Masculino , Análise Multivariada , Avaliação de Resultados em Cuidados de Saúde , Pais , Autorrelato , Resultado do Tratamento , Estados UnidosRESUMO
OBJECTIVE: To compare exposure to household food insufficiency and the relationship between household food insufficiency and both health status and emergency healthcare utilisation among children with and without special healthcare needs (SHCN). DESIGN: Analysing pooled data from the 2016-2017 iterations of the National Survey of Children's Health, we conducted multivariate logistic regressions on household food insufficiency, health status and emergency healthcare utilisation. We assessed interactions between household food insufficiency and children's SHCN status in our models of health status and utilisation. SETTING: United States. PARTICIPANTS: Parents of a nationally representative sample of non-institutionalised children (aged 0-17 years). RESULTS: Children with SHCN were more likely to experience household food insufficiency (70 v. 56 %), non-excellent health status (67 v. 28 %) and emergency healthcare utilisation (32 v. 18 %) than other children. Household food insufficiency was associated with 37 % (children with SHCN) and 19 % (children without SHCN) reductions in the likelihood of having excellent health. Household food insufficiency was associated with a roughly equal (16-19 %) increase in the likelihood of emergency department utilisation across groups. CONCLUSIONS: Compared with other children, children with SHCN have an elevated risk of exposure to household food insufficiency and experiencing greater reductions in health status when exposed.