[The self-actualization of disabled child in family environment].

The problem of self-actualization of disabled children is actual because of barriers in modern society that prevent maximal possible disclosure of their potential and abilities at different stages of growing up. Despite high interest of modern researchers to problematic of self-actualization, this scientific category practically was not investigated in relation to individuals with disabilities, including children, that does not allow to ensure with high degree of efficiency inclusive life-style for this category of citizens. The purpose of the study is to identify specifics of self-actualization of disabled children in various periods of their sociogenesis in family conditions as first social environment of occurring inclusive processes. At that, self-actualization is considered as one of social factors determining formation of inclusive lifestyle of child with persistent health disorders. The theoretical analysis permitted to establish relationship between such categories as self-actualization, lifestyle and social inclusion of disabled children. At the empirical level, the analysis of results of semi-formalized interviews of parents (n=292) and disabled children (n=292) in the Murmansk Oblast, revealed characteristics of self-actualization of disabled children in the family. The social barriers preventing this self-actualization in family environment and inhibiting inclusive processes were identified. The results of the study can be laid in the foundation of designing and implementing variable inclusive social practices of disabled children with disabilities at different stages of sociogenesis, and expanding possibilities for their self-realization, considering needs of socializing personality.

Accuracy of different dental age assessment methods to determine chronological age among children with special needs.

AIM: This study aimed to validate the accuracy of dental age (DA) based on the dental development of permanent teeth in children with special needs using Demirjian, Willems, and London Atlas methods and to correlate the dental and chronological age (CA) of children with special needs in Malaysia. MATERIALS AND METHODS: The panoramic radiographic images belonging to children with special needs from the two teaching dental hospitals in Malaysia aged between 5 and 16 years were included in the study. The evaluation was performed by two observers using three methods (London Atlas, Demirjian, and Willems methods) to estimate the accurate DA. The outcome was determined by comparing the mean of the DA and CA. RESULTS: A total of 52 panoramic radiographs were available for the analysis. The London Atlas and Demirjian methods overestimated the DA with a mean of 0.05 and 0.20 years, respectively, while the Willems method underestimated by 0.19 years. The London Atlas method was highly precise and accurate, while Demirjian and Willems methods were the least precise and accurate. CONCLUSION: The London Atlas method of DA estimation is highly accurate and valid for children with special needs in the Malaysian population, followed by the Willems and Demirjian methods.

What supports and services post COVID-19 do children with disabilities and their parents need and want, now and into the future?

Introduction: Children and youth with disabilities and special healthcare needs, and their families, have been uniquely affected by the COVID-19 pandemic. However, the voices of children themselves are still not well represented in the existing literature. Methods: This qualitative descriptive study used a combination of visual methods and interviews to learn about the experiences of Canadian children with disabilities (n=18) and their parents (n=14) during the COVID pandemic and into the post-pandemic period. Data collection was carried out between January and July 2023. The aim was to identify the supports and services children and families need at present and moving forward. Results: Families' pandemic experiences were complex and nuanced. For many, the pandemic complicated and disrupted everyday activities and supports. These disruptions were largely buffered by parents. However, some families also identified unexpected benefits. Key themes pertaining to present and future needs included the need for services that are flexible; consistent; conducive to relationship-building; comprehensive; coordinated across sectors; and designed to support the needs of the whole family. Discussion: Implications for policy and practice are outlined.

When disability and homoparenting meet: the adoption of children with disability by same sex couples. / Quando a deficiência e a homoparentalidade se encontram: a adoção de crianças com deficiência por casais homoafetivos.

The present theoretical essay is based on six reports concerning same-sex couples and gay and lesbian people in order to interconnect homoparenting and the adoption of children with disabilities, through the lenses of human and social sciences in public health. The reports were interpreted in light of studies on same-sex adoption and the adoption of children with disabilities. Feminist approaches related to care and disability were also included in the interpretative perspective, operating as expressive webs of grammars of ableism. It was found that media approaches endorse the right to family formation and the adoption of children with disabilities by homoparental families, but with little critical depth on the category of disability and without highlighting support for the adoption of all adoptee profiles. Moreover, the intersections between homophobia and ableism increase discriminatory and oppressive logics, with the union of social groups considered to be "undesirable" representing a strategy of governmentality that reveals the complexity of grammars of ableism, applied to the sexual and reproductive rights of LGBTQIA+ adopters and to the fundamental rights of children and adolescents with disabilities who are available for adoption.

O ensaio teórico parte de seis reportagens sobre casais homoafetivos e pessoas gays e lésbicas para interseccionar homoparentalidade e adoção de crianças com deficiência, pelas lentes das ciências humanas e sociais em saúde coletiva. As reportagens foram interpretadas à luz dos estudos sobre adoção homoparental e adoção de crianças com deficiência. Abordagens feministas sobre cuidado e deficiência também compuseram o olhar interpretativo, operando como teias expressivas das gramáticas do capacitismo. Verificou-se que as abordagens midiáticas endossam o direito à constituição familiar e à adoção de crianças com deficiência por famílias homoparentais, sem aprofundar criticamente a categoria deficiência e sem destacar apoio à adoção de todos os perfis de adotandos. E que as intersecções entre homofobia e capacitismo incrementam lógicas discriminatórias e de opressão, sendo a união de grupos considerados "indesejáveis" uma estratégia de governamentalidade que revela a complexidade das gramáticas do capacitismo aplicadas aos direitos sexuais e reprodutivos de adotantes LGBTQIA+ e aos direitos fundamentais de crianças e adolescentes com deficiência disponíveis para adoção.

Childhood disabilities and the cost of developmental therapies: the serviceprovider perspective.

PURPOSE: For children with neurodevelopmental disabilities (CWNDs), early diagnosis that leads to early intervention with regular targeted therapies is critical. In Qatar, private therapy centres that address this demand often have highly exclusive prices restricting families from availing them. This paper examines the challenges faced by families with CWNDs, as well as various financial and systemic obstacles, from the vantage point of these centres, all of which culminate in an extraordinarily high disability price tag for disability families in Qatar. METHODS: This study is based on qualitative, semi-structured, and in-depth interviews with private therapy centres and developmental paediatricians. RESULTS: Therapy centre representatives expressed common struggles in lengthy and cumbersome administration and licencing procedures, difficulty in hiring and retaining high quality staff, and expenses that need to be paid to the state. From their experience, families largely struggle with delayed diagnoses that significantly slow down intervention plans and therapies as well as staggeringly high financial costs with a dearth of funding options. CONCLUSIONS: We recommend sincere engagement, dialogue, and cooperation between multiple stakeholders; a supportive ecosystem to balance and distribute the demand that includes schools and parents; as well more efficient administrative procedures and recruitment strategies.

Exploring long-term outcomes of a peer support programme for parents* of children with disability in Australia.

Peer support groups can offer parents of children with disability, positive well-being outcomes. Peer support groups not only provide opportunities for connections with others with similar experiences but also provide resources and information, emotional support, a sense of belonging and may help reduce stress and isolation. Peer support groups are an established form of support existing within family centred practice. However, it is unclear whether peer support groups achieve the outcomes that they aim to deliver. Further, little is known about the longer-term outcomes for parents attending such groups. This study aimed to explore the medium- and long-term outcomes and experiences of parents who participated in a peer support programme (the Now and Next programme) for parents of children with disability. Well-being data were collected at three timepoints (Ts): prior to commencing the programme (T1), immediately after completion of the programme (T2) and 6-30 months after completion of the programme (T3). Results of the study showed empowerment and well-being improved from T1 to T2, with gains maintained at T3. Hope scores did not significantly change over time. Participants continued to set and achieve goals over time using resources from the programme. Improvements in parents' well-being and empowerment scores were maintained in the longer-term. Our study contributes to evidence confirming sustained long-term outcomes of peer support programmes and demonstrates that building parent capacity, empowerment and well-being has a lasting effect on the parents of children with disability.

The strain among caregivers of children with disabilities at the community-based rehabilitation centres in Kudat division of Sabah, Malaysia.

INTRODUCTION: The prevalence of children with disabilities (CWD) is increasing. CWD requires exceptional long-term attention, which often falls on the caregivers. Caring for a CWD affects caregivers in multiple ways, such as physical, social, personal, and financial aspects. Most of the CWD will be cared in Community-Based Rehabilitation (CBR) centres where the caregivers have to play a crucial role as they become partners in the respective service delivery. However, there is still insufficient information on the impact (strain) of a disabled child on the caregivers in the CBR centre in the Kudat division of Sabah, Malaysia specifically. Hence, this study aims to explore the strains among caregivers of CWD at the CBR centre in the Kudat. MATERIALS AND METHODS: A cross-sectional study through a purposive sampling method was employed, involving 142 caregivers of CWD at the selected CBR centre. Four CBR centres were selected in this study, which were located in the Kudat division of Sabah. The Malay version of the Modified Caregiver Strain Index Questionnaire (M-CSI-M) was used in this study to obtain information about the caregiver's strain. RESULTS: Findings from this study revealed that most caregivers experienced moderate strain (72.5%). Some of the leading causes of their strain were upsetting CWD's behaviour (10.6%), financial strain (9.2%), and overwhelmed (9.2%). In addition, there were significant differences between caregiver strain and their level of education, income, and the types of their child's disabilities (p ≤ 0.05). CONCLUSION: The well-being of the caregivers may significantly impact the effectiveness of rehabilitation for CWD, as caregivers are vital interdisciplinary team members.

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

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

The use of Treatment and Education of Autistic and Related Communication Handicapped Children in schools to improve the ability of children with autism to complete tasks independently: A single-case meta-analysis.

OBJECTIVE: To investigate the effectiveness of a Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) intervention in schools for improving independent task performance in children with autism spectrum disorders (ASD). METHODS: We screened relevant studies published up to December 2022 from Web of science, ERIC, PsycINFO and other databases using predefined inclusion/exclusion criteria to identify suitable intervention studies for meta-analysis. Tau-U effect sizes were calculated for each A-B comparison extracted from the included experiments. Moderated analyses were conducted to examine the type of intervention (independent variable), intervention target behaviours (dependent variable), participant characteristics, setting characteristics and intervener characteristics. RESULTS: A total of 14 studies (38 participants) met the criteria and were included in the meta-analysis. The analysis results showed that TEACCH had a significant intervention effect, and the overall intervention effect size was Tau-U = 0.85[0.77, 0.91]. There were significant differences in the intervention target behaviour variables (p < 0.01), limited variation in the intervention type variables, but no differences in participant characteristics, setting characteristics and intervenor characteristics. CONCLUSION: The use of TEACCH is effective in improving independent task completion in children with ASD and provides evidence-based recommendations for its extended use in schools.

Effects of school-based occupational therapy program for children with disabilities in elementary school in Korea: a case study.

BACKGROUND: The purpose of this case study was to explore the effects of a school-based occupational therapy on children's attention, school adaptation, sensory processing, and motor function for children in special classes in elementary school in Korea. CASE PRESENTATION: The subjects of this study were a 7-year-old boy with autism spectrum disorder and a 9-year-old girl with intellectual disability. The school-based occupational therapy program consisted of 10 sessions and was conducted once a week for an hour and a half. The program consisted of classroom activities, use of school facilities, emotional management, and activities based on sensory integration, and was conducted as individual and group programs according to sessions. As a result of the study, all improved when the pre- and post-scores of the two children's attention assessment, school adjustment scale, sensory processing evaluation tool for the children in school and BOT-2-SF were compared. CONCLUSIONS: Although the results from two cases cannot be generalized, the findings suggest the school-based occupational therapy program may help a positive effect on the school life of children with disabilities. Further investigation is necessary.

Implementing a social work care coordination model for children and youth with special health care needs in a rural-urban health system.

This retrospective chart review examined care coordination among pediatric patients with varying levels of medical complexity who received care in a rural-urban health system. Care coordination utilization across patient acuity levels was examined for meaningful differences in frequency and duration of care coordination services. Results indicated that patients with more severe medical complexity had increased frequency and duration of care coordination services, as well as different patterns of care coordination activity utilization. This model of pediatric outpatient care coordination provides a flexible and highly targeted approach for stratification of care and services based on the needs of the individual patient.

Physical Activity Among Young Children With Disabilities: A Systematic Review.

Physical activity (PA) in the early years is foundational for growth and development and associated with numerous health benefits. However, the prevalence of PA participation among the pediatric population with disabilities is less clear. This systematic review aimed to synthesize the existing literature on PA levels of young children (0-5.99 years) with disabilities. Empirical quantitative studies were collected from seven databases and reference hand searching; 21 studies were included in the review. PA levels varied widely based on disability type and measurement strategies, but overall, PA levels were low. Future research should address the underrepresentation of measurement and reporting of the PA levels of young children with disabilities.

Sexual Abuse of Children With Disabilities: Key Lessons and Future Directions Based on a Scoping Review.

In recent years there has been a growing public and professional interest in situations of risk, abuse, and exploitation of children with disabilities (CWDs). Despite the increasing awareness of CWDs experiencing child sexual abuse (CSA) at high rates, research in this area is still in its infancy. The current study seeks to identify, map, and thoroughly analyze the existing knowledge to better inform future research, policy, and practice. A scoping review was conducted using Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, identifying 35 articles addressing CSA among CWDs based on self-report surveys, official report data, and qualitative interviews. The findings addressed the phenomenon's epidemiology, disclosure, identification patterns, and consequences. Studies showed that CWDs experience CSA two to four times more often than children without disabilities and that they suffer longer and harsher abuse due to factors that complicate the identification of CSA of CWDs. This review highlights the diverse methodologies, producing a high variance in phenomenon rates, as well as unique methodological strategies for addressing challenges in CSA and disability research. Future research should focus on qualitative-retrospective studies of the perceptions of survivors and significant others in their lives (e.g., parents). Moreover, an intersectionality paradigm must be adopted in future studies to address the diverse contexts that construct the phenomenon (including sociocultural contexts). There is also a need to develop integrative interventions to allow higher accessibility of services, adaptive identification mechanisms, and more effective collaboration between professionals and CWDs.

Parenting stress in families of children with disabilities: Impact of type of disability and assessment of attending paediatricians.

BACKGROUND: Parents of children with developmental disorders (DD) or disabilities report greater parenting stress than parents of typically developing children. To minimise this stress, stressful factors need to be known and stress needs to be recognised early. The present cross-sectional study aims to systematically assess and compare parenting stress in families of children with various types of disabilities. In addition, the assessment of parenting stress by attending paediatricians will be evaluated. METHODS: We surveyed 611 parents about their parenting stress at the Children's Development Center (CDC). Three questionnaires, including the German versions of the Parenting Stress Index (PSI) and Impact on Family Scale (IOFS), were used to evaluate parenting stress. Furthermore, attending paediatricians assessed of the child's type of disability and their perception of parenting stress in a separate questionnaire. RESULTS: Fifty-five percent of all parents reported stress at a clinically relevant level, 65% in the child domain and 39% in the parent domain of the PSI. Parenting stress differed significantly across diagnostic categories (p < 0.01) and was associated with childhood disability related issues of behaviour, sleep or feeding issues. Parenting stress was often underestimated by the paediatricians, especially when the children had disabilities perceived as less severe. In one-third of parents with clinically relevant total stress, paediatricians reported low stress levels. Parent-reported financial problems, social isolation, and partnership conflicts were not suspected by paediatricians in ≥85% of cases. CONCLUSIONS: Clinically relevant parenting stress was found more often than in comparable studies. An assessment of parenting stress by paediatricians may be complicated by time constraints in medical appointments, the mainly child-centred consultation, or restricted expression of parents' stress. Paediatricians should move from a purely child-centred to a holistic, family-centred approach to treatment. Routine screening of parenting stress using standardised questionnaires could be helpful to identify affected families.

Collaboration: How does it work according to therapists and parents of young children? A systematic review.

BACKGROUND: Collaboration between therapists and parents of children with developmental disabilities is a key element of family-centred care. In practice, collaboration appears to be challenging for both parents and therapists. This systematic review aims to make explicit how therapists can optimise their collaboration with parents of young children with developmental disabilities, according to the perspectives of parents and therapists. METHODS: A systematic review was conducted using the following databases: Medline (PubMed), CINAHL (OVID) and PsychINFO (OVID). Those papers were selected, which focused on collaboration using a two-way interaction between therapists and parents, exploring the perspectives of therapists and/or parents of children between 2 and 6 years. Papers needed to be published in English or Dutch between 1998 and July 2021. Included papers were synthesised using a qualitative analysis approach by two researchers independently. Results sections were analysed line-by-line, and codes were formulated and discussed by all authors. Codes were aggregated, resulting in a synthesis of specific collaboration strategies in combined strategy clusters. RESULTS: The search generated 3439 records. In total, 24 papers were selected. Data synthesis resulted in an overview of specific strategies organised into five clusters: (1) continuously invest time in your collaboration with parents, (2) be aware of your important role in the collaboration with parents, (3) tailor your approach, (4) get to know the family and (5) empower parents to become a collaborative partner. CONCLUSIONS: This systematic review resulted in an overview of concrete strategies for therapists to use in their collaboration with parents of children with developmental disabilities. The strategies formulated enable therapists to consciously decide how to optimise their collaboration with each individual parent. Making these strategies explicit facilitates change of practice from therapist-led and child-centred towards family-centred care.

Functional Independence of Children With Arthrogryposis.

BACKGROUND: Arthrogryposis (AMC) is a descriptive term to characterize a child born with multiple joint contractures. Treatment aims to improve functional independence, yet the literature objectively describing functional independence in this population is scarce. This study aimed to describe the functional independence of children with AMC through the lens of the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) and observational activities of daily living (ADL) tasks. METHODS: Patients with AMC between the ages of 3 and 12 years participated in this prospective study. Parents completed the PEDI-CAT while a trained occupational therapist observed children as they completed a checklist of functional ADL tasks. Patients were grouped according to developmental age groups: "preschoolers" (3 to 5 y), "early school-age" (6 to 9 y), and "late school-age" (10 to 12 y). Patient's PEDI-CAT normative scores were described, comparing the study population to typically developing children, and differences in each domain were examined between developmental age groups. The observed ADL tasks completed were also described, and differences in scores were examined between developmental age groups. RESULTS: Forty-four patients (mean age of 7±2.86 y) were enrolled. The distribution between age groups was nearly even. Mean daily activities T -score for patients with AMC was 25.80±11.98 and the mean mobility T -score was 17.39±9.77. Late school-age children scored significantly lower than preschool-age children in both of these domains ( P <0.01). Observed ADL tasks demonstrated a high level of required assistance for patients (range: 27.3% to 61.4%), although older school-age children did show greater independence with tested activities than preschool-age children ( P =0.05). CONCLUSION: Children with AMC are significantly limited in functional independence, particularly regarding age-appropriate daily activities and mobility. Outcomes from this study provide a reference to help gauge the results of nonoperative and surgical treatment toward improving functional independence in this population. LEVEL OF EVIDENCE: Level III: prognostic study.

A Mixed-Methods Study on Topical Fluoride Beliefs and Refusal Behaviors for Caregivers of Children with Special Health Care Needs.

OBJECTIVE: To understand topical fluoride-related beliefs and refusal behaviors for caregivers of children with special health care needs (CSHCN). METHODS: This was an explanatory sequential mixed methods study. For the quantitative analyses, we surveyed 520 caregivers to (a) compare fluoride-related beliefs between caregivers of CSHCN and caregivers of healthy children and (b) evaluate the association between special health care need (SHCN) status and topical fluoride refusal. We used logistic regression models to generate unadjusted odds ratios, confounder-adjusted odds ratios (AOR), and 95% confidence intervals (CI). For the qualitative analyses, we interviewed 56 caregivers who refused or were hesitant about topical fluoride. Data were coded deductively and compared by SHCN status to an existing conceptual model of topical fluoride refusal. RESULTS: In the quantitative analysis, 41.3% of caregivers refused or thought about refusing topical fluoride. There were no significant differences in fluoride beliefs by SHCN status (p-values > 0.05) nor was there a significant association between SHCN status and topical fluoride refusal (AOR: 0.65, 95% CI 0.37-1.14; p = 0.13). In the qualitative analysis, the relative importance of each domain of the conceptual model was similar between the caregiver groups. Two differences were that all caregivers of CSHCN thought fluoride was unnecessary and wanted to keep chemicals out of their child's body. CONCLUSIONS FOR PRACTICE: While caregivers of CSHCN were not more likely to refuse topical fluoride than caregivers of healthy children, there may be important differences in the underlying reasons for refusing topical fluoride.