Special Health Needs Research Articles

Correction to “Voluntary Sector's Roles and Relevance as Alternative Arenas for Promotion of Health and Social Inclusion of Migrant Parents and Families of Children With Special Health and Welfare Needs in Norway”

Correction to “Voluntary Sector's Roles and Relevance as Alternative Arenas for Promotion of Health and Social Inclusion of Migrant Parents and Families of Children With Special Health and Welfare Needs in Norway”

Voluntary Sector's Roles and Relevance as Alternative Arenas for Promotion of Health and Social Inclusion of Migrant Parents and Families of Children With Special Health and Welfare Needs in Norway

ABSTRACTMigrant families of children with special health and welfare needs such as mental, developmental, and physical disabilities face significant barriers to health and welfare services. This could result in social inequalities and exclusion. The aim of this article was to explore the role and relevance of voluntary sector in promoting health and social inclusion of migrant families of children with special health and welfare needs in Norway. The study is based on a qualitative participatory research design using co‐production and interdisciplinary research methodologies. A total of 15 voluntary sector employees participated in semi‐structured qualitative interviews. We found three major themes to summarise the role of voluntary sector: 1) Providing arenas for social inclusion and belonging; 2) Facilitating access to public health and welfare services; and 3) Provision of complementary health and welfare services. Results indicate that voluntary services use more informal community centered caring approaches and are supplementary to public health and welfare services. An exploration of more opportunities for participation of migrant families of children with special health and welfare needs in the development of services and collaboration between voluntary services and public welfare providers may foster inclusion and could be of relevance to future welfare research and practice. Please refer to the Supplementary Material section to find this article's .

Mental health of children with special health needs in Manitoba, Canada

Children with special health needs (SHN) may be more likely to experience mental disorders compared to their peers without SHN. The aim of this study was to establish and contextualize the risk of mental disorders among children flagged as having SHN at school entry. We linked data from the Early Development Instrument (EDI), a teacher-completed questionnaire of children’s developmental health in kindergarten, collected in Manitoba between 2006 and 2015, with provincial health administrative data up to 2019. Using binary logistic regressions, we examined the odds of receiving a diagnosis of any mental disorder, by categories of SHN: special needs, impairments in physical, vision/hearing, learning, speech, behaviour, and emotions, needing further assessment, and having 2+ SHN categories. Of the 36,462 children with EDI data linked to health administrative data, 5,882 (16.1%) were identified as having a SHN in kindergarten. The odds of developing a mental disorder varied by subtype of SHN. Children needing further assessment, with special needs, 2+ SHN categories, or with a learning, behavioural, or emotional impairment had between 1.35 and 3.27 times the odds of receiving a mental health diagnosis than their peers without these issues. Having a behavioural impairment increased a child’s odds the most. Having a physical, visual, or hearing impairment was not associated with a mental disorder. Having a special needs designation and impairments in behaviour and emotions in kindergarten puts children at risk of a future mental disorder. These findings may help generate wider mental health supports in schools for children with SHN.

Premature Newborns with the Potential to Develop Special Health Needs: An Approach by Triangulation of Methods

Introduction: Maternal recognition of special health needs of premature babies is essential, given the importance of early stimuli after discharge to strengthen child development. Objective: To identify premature newborns with potential factors for the development of special health needs and describe maternal recognition of these factors. Materials and methods: Qualitative and quantitative study, performed using a triangulation method, with concomitant incorporation of data, included to analysis Chi-square test (p<0.05) for quantitative data and interpretation of meanings for qualitative. Variables: Birth weight, gestational age, Apgar score, complications, and length of hospital stay from 951 records of hospitalized premature infants; 18 mothers were interviewed during hospitalization, 15 days after discharge at home, 30 days after this at-home visit and at the age of 6 months of the child, by telephone, in Southern Brazil. Results: Identified as potential factors: Extreme prematurity and/or very premature, low birth weight, complications, and prolonged hospitalization. With the incorporation of the data, the relevance of these factors for children at risk of changes in development and behavior was verified. Mothers described their children as having healthy development but recognized prematurity is a factor that predisposes to new hospitalizations, and perinatal factors and those related to hospitalization contribute to the development of special health needs. Conclusion: The importance of early identification of factors that enhance the development of special health needs is understood to initiate the necessary stimuli to strengthen child development.

Features of the Influence of the Autonomic Nervous System on the Regulatory and Metabolic Parameters of Lymphocytes in Healthy Children and Children with Special Health Needs

Features of the Influence of the Autonomic Nervous System on the Regulatory and Metabolic Parameters of Lymphocytes in Healthy Children and Children with Special Health Needs

Vulnerability of Children with Special Health Needs: implications for nursing

RESUMO Objetivou-se analisar o perfil social e clínico das Crianças com Necessidades Especiais de Saúde internadas nas enfermarias pediátricas de um hospital materno-infantil do Distrito Federal. Trata-se de pesquisa quantitativa de corte transversal, realizada com 120 crianças e seus familiares/cuidadores principais. Utilizou-se questionário estruturado com 26 itens, que, posteriormente, passou pela análise descritiva e inferencial dos dados. Os resultados apontam a mãe como principal familiar/cuidador (92,5%), com nível médio de escolaridade (58,3%). As crianças eram, majoritariamente, do sexo masculino (63%), com malformações congênitas, deformidades e anomalias cromossômicas (29,1%). Houve correlação positiva entre escolaridade do familiar/cuidador e necessidade de internação na Unidade de Terapia Intensiva (p-valor<0,01) e o número de internações nos últimos 12 meses com as demandas de cuidados tecnológicas (p-valor<0,01). Assim, identificaram-se também a vulnerabilidade social das famílias e a necessidade de estratégias de educação em saúde voltadas para as demandas tecnológicas de cuidado.

Professional Care in Home for Children and Teenagers with Special Health Needs: An Integrative Review

Objective: Analyzing the results of scientific publications on professional home care for children and teenagers with special health needs. Materials and method: An integrative review with articles published between 2009 and 2020 conducted in the BDEnf, Lilacs, Medline/PubMed databases and in the SciELO electronic library. The data were analyzed in four stages: data reduction; display of the data; comparison of data; drawing and verification of completion. Results: There were identified 5,641 articles; after the application of the inclusion and exclusion criteria and disposal of duplicates, 637 articles were chosen for the reading of titles and abstracts, of which 61 were selected for full reading and of these, 28 composed the final sample. The offer of remote support actions and concern in training caregivers regarding the technical-scientific aspects of home care was identified, in addition to promoting the improvement of the quality of life of children/teenagers and their families. A gap was evidenced regarding the identification and management of pain by home service professionals. Conclusions: The performance of home services to this specific population focuses on the demands of care with health technologies and on promoting symptom relief, reducing the workload of caregivers and assisting in dehospitalization.

“All circuits ended”: Family experiences of transitioning from pediatric to adult healthcare for young adults with medical complexity in Oregon

BackgroundTransition to adult health care for young adults with medical complexity (YAMC) is challenging and much work needs to be done in this area. The Oregon Center for Children and Youth with Special Health Needs participates in a federally-funded Collaborative Improvement and Innovation Network (CoIIN) to improve the quality of care for children with medical complexity. AimsThis study aimed to explore the experiences of Oregon families of YAMC who had recently transitioned to adult health care providers, and obtain recommendations for transition from family members, to inform the development of the CoIIN quality improvement project. MethodsWe recruited caregivers of YAMC, ages 18 through 22 years, using a purposive sampling approach and conducted semi-structured interviews with 12 parents and grandparents. We analyzed the interview data to generate themes and sub-themes. ResultsFamilies described having little to no notice about transitioning out of pediatric care and reported that their providers did not communicate with them about the steps needed to ensure a continuation of care into adulthood. Poor transition processes contributed to gaps in needed care, decline in health status of the young adults and psychological burden on the family. Families had to take on the responsibility of meeting the transition needs of YAMC and faced challenges in finding adult providers. ConclusionsThe results of this study suggest that YAMC and their families cared for by Oregon health care settings are not adequately prepared for, or supported in, the transition from pediatric to adult health care.

Organization and Content of the Psychological and Pedagogical Support of Students with Special Health Needs at the Vladimir State University

The article is devoted to the issue of organizing inclusive education in Russian universities. The authors of the article offer a comparative analysis of the concepts used in the psychological and pedagogical Russian literature and practice: “invalid” and “person with disabilities”. The article focuses on the psychological and pedagogical organization of educational activities at the university with psychology students, taking into account their nosology. The authors describe their experience in organizing and conducting psychological and pedagogical support for disabled students studying at the university; forms and methods. The description of work experience is based on the theoretical and methodological foundations of Russian psychology and pedagogy. The article describes the work of different departments of the university and proves the idea of the need for comprehensive support for students with disabilities studying at Russian universities.

Getting Ready for Adult Healthcare: Designing a Chatbot to Coach Adolescents with Special Health Needs Through the Transitions of Care

ObjectiveThe AAP, AFP, and ACP have authored statements and recommendations to clinicians about the importance of the transition from pediatric to adult care. The Got Transition program provides a framework and resources based on AAP, AFP and ACP recommendations to promote skill attainment in self-care. Engaging adolescents along the transition journey has proven challenging. Use of smartphones, text messaging, and social media are prevalent among teenagers, offering a unique opportunity to engage teenagers in their preferred channel to provide tools and resources to help them successfully transition to adult focused care. MethodsA multidisciplinary team of clinicians, quality improvement facilitators, and human-centered designers at the University of Vermont (UVM) Children's Hospital designed tools for teens with chronic conditions that support the Got Transition recommendations. Using a co-creative design process, we created a novel tool to increase engagement among teenagers. We conducted a pilot study of 13 teenagers with a chronic medical condition using a text messaging platform (chatbot) with scripted interactions to increase engagement and deliver educational content according to Got Transition. ResultsMean engagement was 97% during the study period. Qualitative feedback from study participants suggests our chatbot should be extended and shows promise to help teenagers attain self-care skills on the transition journey. ConclusionsA scripted text messaging platform is feasible and appears to be well-received by patients and caregivers. Furthermore, our approach emphasizes the need to engage teenagers through multiple platforms to effectively serve as “coaches” during the transition to adult care.

Образование лиц с ОВЗ: помощь или дискриминационный отказ

Образование лиц с ОВЗ: помощь или дискриминационный отказ

Validation of the Early Development Instrument for children with special health needs.

Population-level data on the development of children with special health needs attending primary school can assist special education, health and service delivery strategies. This study aims to determine whether results of the Early Development Instrument (EDI) can be interpreted and used with the same confidence for children with special health needs as for those who are typically developing. Psychometric properties of the EDI for kindergarteners with identified special health needs are examined. Data for children with a special health need designation come from a database of all Canadian provincial implementations of the EDI between 2004 and 2014. Item and domain characteristics (distributions of scores and measures of internal consistency) of the EDI were examined. Construct validation was assessed by correlating EDI scores with gender and age. The fit of the original factor structure of the EDI was evaluated using confirmatory factor analysis. Data for 29 692 children (69.8% male) were analysed. The performance of items and domains was similar to that of typically developing children. As expected, boys scored lower on all EDI domains (Cohen's d: 0.03-0.46) and a general, but non-significant, positive trend was observed between age and EDI scores. The factor structure of the EDI in this population yielded similar goodness-of-fit statistics as those reported in studies with typically developing children. Results of this investigation support the validity of the EDI in children with special health needs, paving the way for a more extensive use of EDI data for this vulnerable, yet often neglected, population.

Феномен аутизма в культурно-антропологической перспективе

The entity of people with special health needs (SHN), in particular with disorders of the autistic spectrum becomes an important socio-cultural subsystem. This subsystem covers not only persons with SHN, but also their environment. The implementation of the correctional system is a disadvantage, in comparison with the inclusive model in which people with SHN are integrated into society. The problem for the solution of which the authors’ efforts are made is that, for the present, the considerable part of the world population is not ready to accept the autistic community as a real agent of the social planning, which fulfills its own management strategies. Researchers of autism quite often ignore a position of the most autistic community on this or that question. The purpose of this article consists in search of approaches to creation of a conceptual model of autism and autistic community, which could form the reliable basis for development of the social technologies promoting a full integration of the people with special health needs into society. Mainly theoretical methods of research are used: logical analysis, elements of the structural-functional analysis, comparative analysis, and also axiological approach. At the same time, an attempt to generalize a primary data obtained by empirical methods, such as observation, participant observation, questioning, the content analysis, interview is made. It is shown that for the stated goal to be achieved it is fruitful to consider a phenomenon of autism in the prospect of cultural anthropology. The concept of autistic culture is clarified and its relevance for study of autism and autistic community is substantiated. Some features of autistic culture are revealed. The discussion showed that many criteria of autism can be fully understood from the cultural-anthropological standpoint. The proposed approach meets the principles of post-non-classical rationality and allows to mitigate the social-biological dilemma. The results obtained can form a methodological-and-world-outlook basis for investigations in the fields of pedagogics, psychology, culturology.

Impact of a Complex Care Management Model on Cost and Utilization Among Adolescents and Young Adults with Special Care and Health Needs.

Adolescents and young adults with special care and health needs in the United States-many of whom have Medicaid coverage-at the transition phase between pediatric and adult care often experience critical care gaps. To address this challenge, a new model-referred to as Comprehensive Care Clinic (CCC)-has been developed and implemented by Geisinger Health System since 2012. CCC comprises a care team, consisting of a generalist physician, advanced practitioner, pharmacist, and a nurse case manager, that develops and closely follows a coordinated care plan. This study examines the CCC impact on total cost of care and utilization by analyzing Geisinger Health Plan claims data obtained from 83 Medicaid patients enrolled in CCC. A set of multivariate regression models with patient fixed effects was estimated to obtain adjusted differences in cost and acute care utilization between the months in which the patients were enrolled and the months not enrolled in CCC. The results indicate that CCC enrollment was associated with a 28% reduction in per-member-per-month total cost ($3931 observed vs. $5451 expected; P = 0.028), driven by reductions in hospitalization and emergency department visits. This finding suggests a clinical redesign focused on adolescent and young adults with complex care needs can potentially reduce total cost and acute care utilization among such patients.

Busca ativa de crianças com necessidades especiais de saúde na comunidade: relato de experiência

Aim: to report the experience of Nursing students of Universidade Estadual do Oeste do Parana in the active search of Children with Special Health Needs (CRIANES) by two Family Health Strategy (ESF) teams of a city in southern Brazil and to outline their main demands for care. Method: experience report conducted during the supervised internship in a Family Health Unit. Results: four CRIANES were found, who were not known by the health team. It was observed demands of: care for development; care for medication; modified care; and technological care. It was recommended to the health team: higher frequency of home visits; planned attention to CRIANES and their families; care protocols; exchange with schools. Final Considerations: this experience has demonstrated the importance of Family Health Strategy in making active search and monitoring the care of CRIANES through comprehensive actions of health promotion, prevention of diseases and intersectoral actions

Legislative: Transitioning the Older Adolescent Living with Autism Spectrum Disorder to Adult Primary Medical Home: A Call for Nursing Action

Autism Spectrum Disorder (ASD) is a neurodevelopmental, chronic illness characterized by abnormal or impaired development in social interaction and communication, and a restricted repertoire of activity and interests (American Psychiatric Association. 20001. The Centers for Disease Control and Prevention (20141 has estimated that 1 in 68 United States (U.S.) children have been diagnosed with ASD by the age of three; schoolaged boys comprise 1 in 42 of the children diagnosed with ASD. ASD is the fastest growing developmental disability (Autism Speaks. 2011: Centers of Disease Control and Prevention. 20141. Children and adolescents living with ASD may need care from both primary healthcare providers and medical specialists, as well as behavioral health, social, educational, and vocational services.Furthermore, children living with ASD are more frequently diagnosed with other developmental, psychiatric, neurologic, or medical co-occurring chronic illnesses than are children without an ASD diagnosis (Levy et al.. 20101. Analyzing Medicaid insurance claims of ASD children in eight states in the US through ICD-9-CM codes for ASD, Peacock, Amendah, Ouyang, and G rosse (20121 reported that 53% of the ASD children were commonly diagnosed with attention deficit/hyperactivity disorder, seizures, or intellectual disabilities and that the financial cost of managing these illnesses in ASD children was six times greater than for children with nonASD diagnosis. Peacock et al. (20121 also noted significant differences in the cost of outpatient services, medication, and inpatient services between children with ASD and children with non-ASD diagnoses.Due to the needs and complexities of children and adolescents living with ASD, care coordination by a primary care provider within a medical home model is strongly encouraged. Previous researchers have documented the benefits of access to a medical home for children and adolescents, especially if a special health need is present (Strickland et al.. 20041. Healthy People 2020 (U.S. Department of Health and Human Services, 20121 (MICH-30 and MICH-31) established a goal to increase access to medical homes for children with special healthcare needs (CSHCN) to ensure that every child's preventative and special healthcare needs are met without any gaps in care. A medical home, or patient-centered healthcare home, provides coordination of care with a primary healthcare provider who is able to offer a seamless transfer of pediatric-specific primary care into adulthood. Yet children and adolescents with ASD more often lack a medical home compared to children with other special needs, especially during their transition into adult, primary healthcare (Golnik. Ireland. & Borowskv, 20091.Resources for transitioning older adolescents and young adults living with ASD into any adult social or health services decrease dramatically after age 22 (Gerhardt. 20091. During this transitional period, gaps in healthcare services are likely to occur when an adult primary medical home is unavailable. Transitional medical homes are needed. Unfortunately, nursing does not have a significant presence in transitional medical homes. Reasons for the lack of nursing presence during this transition include the lack of knowledge about both ASD and the concept of transition from adolescent to adult healthcare services (Osterkamp. Costanzo. Ehrhardt. & Grom lev. 20131. We recommend the following approaches to promote effective transition from adolescent to adult services for people living with ASD: (a) development of an advanced practice nursing role to facilitate healthcare transitions, (b) education of all adult primary healthcare providers regarding ASD, and (c) legislative advocacy to educate elected officials about healthcare issues of people living with ASD and the need to support the continuation of the Combating Autism Reauthorization Act of 2011 so as to strategically plan the needs of people living with ASD. …

Prevalence of Dentulism, Partial Edentulism and Complete Edentulism in Rural and Urban Population of Malwa Region of India: A Population-based Study

ABSTRACT Background The objective of this study was to evaluate the prevalence of dentulism, partial edentulism and complete edentulism in rural and urban population of Malwa region of India, who visited at department of prosthodontics for the first time. Materials and methods An institution-based, cross-sectional study using the random sampling method was used to select the study sample of 1000 males and females. Data were collected using questionnaires and oral examination. Data were statistically analyzed using Chi-square test. Results Nearly, 38.5 and 63.1% of the rural and urban females were dentulous in the age of below 53 and 43 years. 61.4 and 36% of rural and urban males were dentulous in the age of below 53 and 43 years. Nearly, 41.9 and 48.2% of the rural and urban females were partial edentulous in the age of above 53 and 43 years. Fifty-eight and 51.7% of rural and urban males were dentulous in the age of above 53 and 43 years. Nearly, 22.4 and 55.8% of the rural and urban females were completing edentulous in the age of above 43 years in both population. 77.5 and 44.1% of rural and urban males were completing edentulous in the age of above 33 and 53 years. Limitation The study was conducted in an institution-based set-up. Hence, any interpretation of the results of this study must bear this limitation in mind. Conclusion It is essential to identify feasible strategies to provide primary dental health education and treatment to all rural and urban elderly in the future. We suggest community dental health services to be included in general health of the elderly rather than a special health need of the community. How to cite this article Sonkesariya S, Jain D, Shakya P, Agrawal R, Prasad SVS. Prevalence of Dentulism, Partial Edentulism and Complete Edentulism in Rural and Urban Popu- lation of Malwa Region of India: A Population-based Study. Int J Prosthodont Restor Dent 2014;4(4):112-119.

To study the prevalence of complete edentulousness among rural and urban population of Udaipur district of Rajasthan in relation to age and gender

Background: The objectives of this study were to evaluate the frequency of complete edentulism among rural and urban population of Udaipur district of Rajasthan who visited at a department of prosthesis at a university for the 1 st time. Materials and Methods: A cross-sectional study using the systematic cluster sampling method was used to select the study sample of 524 elderly men and women. Data were collected using questionnaires and oral examination. Data were statistically analyzed using a Chi-square test. Results: Nearly 52.3% and 47.8% of the rural and urban females were completely edentulous in the age group of 30-50 years and 51-70 years. 55.1% and 53.8% of urban and rural males were completely edentulous in 51-70 years of age groups. Conclusions: It is essential to identify feasible strategies to provide primary dental health education and treatment to all rural and urban elderly in the future. We suggest community dental health services as a general health need of the elderly rather than a special health need of the community.

Oral health status of special health care needs children attending a day care centre in Chennai

Introduction: Oral health is an important aspect of health for all children and is all the more important for children with special needs.Aim: To evaluate the oral health status of special health need children at Vidya Sudha, a day care centre in Chennai. Materials and Method: A modified WHO oral health assessment form was used to assess the caries experience, gingival, and oral hygiene status.Result: Data were analyzed using ANOVA and chi-square test. No statistical significant differences were found between the evaluated groups regarding age or gender, and medical conditions. Conclusion: Majority of the children had poor oral hygiene, showing high caries prevalence as well as moderate gingivitis.

Developmental Supports for Newborns and Young Infants with Special Health and Developmental Needs and Their Families: The BABIES Model

Fragile newborns and young infants who are born with a likelihood of lingering developmental concerns require specialized assessment and intervention based on their unique developmental needs. Often these infants are identified as categorically eligible for early intervention and nursing services, based on their medical condition at birth. The medical involvement of many of these infants adds complexity to the evaluation and/or provision of services, let alone how to best provide supports for their families. Increasing data regarding the regulatory disorganization of young infants which leads to later cognitive and mental health challenges provide a rationale for appropriate assessment and intervention strategies for this population. A recent survey of educational needs of Colorado professionals working with this population revealed that many early intervention providers felt only “slightly” prepared to evaluate newborns and young infants and that most providers felt they could benefit from more training on assessment and intervention with this population. Best practice for this increasing population includes specialized and evidence-based training and capacity building necessary to prepare professionals to evaluate, intervene, and support their unique fragility and emerging developmental competencies. The current study describes the development and components of the BABIES approach to supporting early intervention professionals and nurses to best integrate relationship based developmental supports for fragile newborns and young infants.