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1.
Heliyon ; 10(7): e28241, 2024 Apr 15.
Artículo en Inglés | MEDLINE | ID: mdl-38560242

RESUMEN

Background: Family-Centered Care (FCC) is an approach to healthcare planning, delivery and evaluation, based on beneficial partnerships between health professionals, patients and families. FCC may be particularly relevant for families with children with intellectual disability (ID), given their needs of continuum care. Objective: To identify which components of the FCC are practiced and which health outcomes are considered effective in families with children with ID. Method: A systematic review guided by the PRISMA STATEMENT 2020 approach and the STROBE reporting guidelines was performed on specific databases through the EBSCOhost Web platform: MEDLINE with Full Text, CINAHL PLUS with Full Text, Academic Search Complete and Psychology and Behavioral Sciences Collection. Peer-reviewed articles published in English or Portuguese languages from 2018 to September 2023 were retrieved. Methodological quality was established using the Quality Assessment Tool for Observational, Cohort and Cross-Sectional Studies - NHLBI, NIH. Results: Ten studies met the eligibility criteria and were synthetized. The results revealed nine components, reflecting the way FCC was developed: shared decision-making; family education; respect for culture; family engagement; recognition of the family's needs, characteristics and interests; specialized care support; social and emotional support; family functionality; and family seen as a unit. The health outcomes demonstrate effective gains in improving children's health through family satisfaction with health services. Also achieved psychological and social benefits, with improved family well-being and quality of life, favoring family empowerment. Conclusions: The evidence suggests that FCC components involves an effective partnership between the family and health professionals as the main key in developing care plans, as well as the experience that the family unit brings to the delivery of care. FCC approach include all family members as decision-makers, providing emotional, physical and instrumental levels of support. Health outcomes emerged in three strands; for children with ID, families and health services.

2.
J Pediatr Nurs ; 2024 Apr 09.
Artículo en Inglés | MEDLINE | ID: mdl-38599999

RESUMEN

PURPOSE: To explore nurses' experiences of establishing partnerships with parents for pain care of hospitalized children with cognitive impairment (CI) and identify related facilitators and barriers. DESIGN AND METHODS: In this qualitative, interpretive descriptive study, individual semi-structured interviews were conducted via videoconferencing with pediatric nurses from inpatient wards in a Canadian pediatric quaternary hospital. Verbatim transcripts were analyzed using an inductive, data-driven thematic analysis approach. RESULTS: Eleven nurses were interviewed. The overarching theme was Assessing Pain as an Outsider: "A Complete Guessing Game". Seven major themes were identified.: Relying on Parent Expertise for Pain Assessment, Brainstorming with Parents for Pain Treatment, Supporting Parents as Advocates for Pain Care, Individualizing Pain Care with Parents, Involving the Child in Pain Care: A Spectrum, Barriers to Partnership in Pain Care and Facilitators to Partnership in Pain Care. CONCLUSIONS: Nurses described the many ways they involve parents as partners in pain care. However, nurses shared strong feelings of uncertainty associated with pain care in children with CI. Consequently, nurses felt the need to rely on parents for appropriately assessing and treating pain in children with CI. Findings highlighted the practice and education gaps that may contribute to nurses' uncertainty and reliance on parents. PRACTICE IMPLICATIONS: By identifying related practice and education gaps, healthcare organizations can implement strategies to further support nurses in establishing partnerships and potentially optimize pain care practices.

3.
Artículo en Inglés | MEDLINE | ID: mdl-38644526

RESUMEN

BACKGROUND/AIM(S): Globally, studies have shown that the dental disease burden among persons with intellectual and/or developmental disabilities (IDD) is high and can be attributed to lower utilization levels of dental services. The aim of the study was to assess the influence of income and financial subsidies on the utilization of dental care services among persons with IDD in Singapore. METHODS: Between August 2020 and August 2021, a cross-sectional study was conducted via centres offering Early Intervention Programme for Infants and Children, special education schools and adult associations in Singapore serving persons with IDD. A sample of 591 caregivers of children and adults with IDD completed the survey. Data on sociodemographic information, oral health behaviours and dental utilization were collected. Financial subsidy status was assessed by the uptake of a government-funded, opt-in Community Health Assist Scheme (CHAS) for low-income families that provided a fixed subsidy amount for dental services in the primary care setting. Statistical analysis was carried out using univariable, multiple logistic regression and modified Poisson regression. Propensity score matching was carried out in R version 4.0.2 to assess the impact of financial subsidies on oral health care utilization among persons with IDD. RESULTS: Compared to those with lower gross monthly household incomes, the adjusted prevalence ratios of having at least one dental visit in the past year, having at least one preventive dental visit in the past year, and visiting the dentist at least once a year for persons with IDD with gross monthly household incomes of above SGD$4000 were 1.28 (95% CI 1.08-1.52), 1.48 (95% CI 1.14-1.92) and 1.36 (95% CI 1.09-1.70), respectively. Among those who were eligible for CHAS Blue subsidies (247 participants), 160 (62.0%) took up the CHAS Blue scheme and 96 (35.4%) visited the dentist at least yearly. There was no statistically significant difference in the utilization of dental services among individuals enrolled in the CHAS Blue subsidy scheme among those eligible for CHAS Blue subsidies. CONCLUSION: Higher household income was associated with a higher prevalence of dental visits in the past year, preventive dental visits in the past year, and at least yearly dental visits. CHAS Blue subsidies alone had limited impact on dental utilization among persons with IDD who were eligible for subsidies.

4.
Int J Paediatr Dent ; 2024 Apr 22.
Artículo en Inglés | MEDLINE | ID: mdl-38646678

RESUMEN

BACKGROUND: Children with disabilities generally face poorer oral health outcomes compared with their non-disabled peers due to a range of factors including inadequate oral hygiene, infrequent dental visits and systemic barriers in accessing care. AIM: This ethnographic study explored the perspectives of caregivers and professionals to identify the ways that children with disabilities are included in oral health. DESIGN: A purposive sample of 10 caregivers, all mothers with disabled children aged 9-15 years, five healthcare providers and five educators in Saudi Arabia, participated. Data collection used participant observation and semi-structured in-depth interviews. Data were analysed using reflexive thematic analysis. RESULTS: The findings suggest that mothers lacked a supportive environment to develop their skills and knowledge about oral health care, preventing them from including their children in oral health. Inaccessible services added to the exclusion of both mothers and children. Some dental professionals exhibited poor communication skills and discriminatory attitudes towards the children and problematising mothers. Educators tended to discuss disabled children in terms of inability, displaying a deficit approach to impairment. CONCLUSIONS: The evidence suggests the exclusion of mothers from oral health. This has an impact on how they enable their children. Recommendations include adopting a social model of disability in dental education and policies in Saudi Arabia to address inequalities. Provision of support, education and focusing on societal barriers moves towards inclusion rather than conceptualising disability as an individual problem.

5.
Arch Argent Pediatr ; : e202310257, 2024 Apr 25.
Artículo en Inglés, Español | MEDLINE | ID: mdl-38656786

RESUMEN

Cerebral palsy (CP) affects body posture and movement coordination and is the most common cause of severe disability in the pediatric population. The diagnosis of CP is not a description of a person's functioning or interaction with their environment. Therefore, the diagnosis should be complemented with a description of functioning, using tools based on the biopsychosocial model proposed by the World Health Organization's International Classification of Functioning, Disability and Health (ICF). This report describes the preliminary data from a multicenter study conducted in Argentina with the aim of standardizing the description of the profiles of functioning of children and adolescents with CP. These data showed that the participants had some skills in sleep functions, mental functions of language, seeing functions, and in some environmental factors. They showed significant difficulties in categories such as maintaining body position, walking, and toileting.


La parálisis cerebral (PC) afecta la postura y la coordinación del movimiento, y es la causa más común de discapacidad grave en la población pediátrica. El diagnóstico de PC no describe el funcionamiento ni la interacción de la persona con el contexto en el cual se desarrolla. Por lo tanto, el diagnóstico se debe complementar con una descripción del funcionamiento, utilizando herramientas basadas en el modelo biopsicosocial de la Clasificación del Funcionamiento (CIF) de la Organización Mundial de la Salud (OMS). En esta comunicación, describimos los datos preliminares de un estudio multicéntrico en Argentina destinado a estandarizar la descripción del perfil de funcionamiento en niños y adolescentes con PC. Estos datos mostraron que los participantes tienen algunas habilidades en las funciones del sueño, las funciones mentales del lenguaje y las visuales, así como en algunas relacionadas con el contexto. Presentan dificultades importantes en categorías tales como mantener la posición del cuerpo, el andar y la higiene.

6.
Disabil Rehabil Assist Technol ; : 1-10, 2024 Mar 27.
Artículo en Inglés | MEDLINE | ID: mdl-38533741

RESUMEN

Brain-computer interfaces (BCI) offer promise to the play of children with significant physical impairments, as BCI technology can enable disabled children to control computer devices, toys, and robots using only their brain signals. However, there is little research on the unique needs of disabled children when it comes to BCI-enabled play. Thus, this paper explored the lived experiences of play for children with significant physical impairments and examined how BCI could potentially be implemented into disabled children's play experiences by applying a social model of childhood disability. Descriptive qualitative methodology was employed by conducting four semi-structured interviews with two children with significant physical impairments and their parents. We found that disabled children's play can be interpreted as passive or active depending on one's definition and perceptions surrounding play. Moreover, disabled children continue to face physical, economic, and technological barriers in their play, as well as play restrictions from physical impairments. We urge that future research should strive to directly hear from disabled children themselves, as their perspectives may differ from their parents' views. Also, future BCI development should strive to incorporate video games, recreational and entertainment applications/platforms, toys and switch-adapted toys, and power wheelchairs to better support the play of children with significant physical impairments.Implications for RehabilitationAssistive technology research should strive to examine the social, infrastructural, and environmental barriers that continue to disable and restrict participation for disabled children and their families through applying a social model of childhood disability and other holistic frameworks that look beyond individual factorsFuture research that examines the needs and lives of disabled children should strive to directly seek the opinions and perspectives of disabled children themselvesBrain-computer interface development should strive to incorporate video games, recreational and entertainment applications/platforms, toys and switch-adapted toys, and power wheelchairs to better support the play of children with significant physical impairments.

7.
J Clin Pediatr Dent ; 48(2): 163-172, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38548646

RESUMEN

The appropriateness for determining Oral Health Related Quality of Life (OHRQoL) of special children by their caregivers must be thoroughly assessed. The present study was conducted to assess the Oral health related quality of life of children with disability and the stress levels of their parents. Moreover, the study also evaluated the plaque, DMFT (Decayed, missing, filled teeth) and BMI (Body Mass Index) of disabled children (cases) and healthy children (controls). The present case-control study was carried out on 150 parents of disabled children and 30 parents of healthy children (control group) at King Khalid University, Abha, KSA. The Arabic version of the 36-item parenting stress index-short format (PSI-SF) instrument was used for the assessment of parental stress, and the WHOQOL-BREF (World Health Organization Quality of Life Brief Version) Arabic version questionnaire was used for the assessment of quality of life of children. The parents or the caregivers who would be mainly occupied in assisting and rendering care to their children with different disabilities (certified by a pediatrician, aged between 4-14 years), were included in the study. Data were analyzed using statistical software. The total mean value score of the PSI scale of parents of cases was statistically found to be significantly higher compared to the mean scores among parents of controls (p = 0.004). The correlation between BMI and plaque & BMI and DMFT+df of cases indicated no statistically significant correlation while a statistically significant correlation between plaque and DMFT+df values in cases was observed. The mean score of the social relationship domain was statistically significantly different across the four levels of parents' educational status. The severity of dental caries, plaque accumulation and education-level of caregivers had a significant impact on the OHRQoL, however, BMI did not show a significant relation with DMFT and plaque scores. The parenting stress was found to be statistically higher among the parents of cases compared to the parents of controls.


Asunto(s)
Caries Dental , Salud Bucal , Adolescente , Niño , Preescolar , Humanos , Índice de Masa Corporal , Estudios de Casos y Controles , Atención a la Salud , Responsabilidad Parental , Calidad de Vida , Arabia Saudita
8.
Mol Genet Metab Rep ; 38: 101059, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38469094

RESUMEN

Metachromatic leukodystrophy is a rare autosomal recessive disease. There are three forms of this disease, all of which result in cognitive and motor dysfunctions. Although enzyme replacement and gene therapies have been developed, they are not expected to be effective in patients with advanced diseases. Therefore, it is important to focus on treatment effects and patients' quality of life; however, qualitative findings on the experiences of patients and their families have not been adequately reported. Interviews were conducted with the family members of patients with metachromatic leukodystrophy in Japan. Verbatim transcripts were analyzed using a qualitative content analysis approach. We interviewed the mothers of five patients. Verbatim interview transcripts were classified into 81 codes. The codes were then aggregated into 15 categories and 3 themes: challenges of life for the patients, challenges in the healthcare system, and challenges of family function. Disease progression greatly affects patients' lives. Moreover, social systems supporting patients and their families are inadequate, especially as the disease progresses. Family members face life restrictions and role changes because of the patient's diagnosis. Patients with metachromatic leukodystrophy and their families require comprehensive support.

9.
J Prev Med Public Health ; 57(2): 157-166, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38374710

RESUMEN

OBJECTIVES: Children with disabilities may exhibit a multitude of symptoms, and treatment requires a multidisciplinary approach for a satisfactory outcome. Lack of awareness among physicians, lack of referral, and lack of inter-sectoral coordination have hindered paediatric practice in Tamil Nadu, a state in India with a striking childhood disability rate that warrants a timely interdisciplinary approach. However, the perspectives of paediatricians on paediatric physiotherapy are unknown. The aim of the study was to investigate the perspectives of practicing paediatric physicians in Chennai on the role of physiotherapy in paediatrics. METHODS: For an in-depth exploration, qualitative semi-structured interviews were conducted in person with 10 paediatricians. Audio from the sessions was recorded and transcribed, and data saturation was achieved through iterative analysis. RESULTS: A grounded theory analysis of the results yielded 5 domains under which the perspectives and expectations of the physicians were described, along with the barriers experienced by patients' parents as explained by their paediatrician. The responses highlighted deficits in awareness, structural support, accessibility and direct communication between physicians and physiotherapists. CONCLUSIONS: Paediatric physicians have different opinions, and some ignorance persists concerning paediatric physiotherapy. This study warrants a proper structure of the paediatric rehabilitation unit and regular interdisciplinary meetings and focus group discussions to increase access for parents and improve patient outcomes.


Asunto(s)
Médicos , Derivación y Consulta , Humanos , Niño , India , Grupos Focales , Modalidades de Fisioterapia , Investigación Cualitativa
10.
Children (Basel) ; 11(2)2024 Feb 13.
Artículo en Inglés | MEDLINE | ID: mdl-38397351

RESUMEN

Even though it is already known that parents of children with developmental delays or disabilities experience higher parenting stress than families of typically developing children, the contributing factors need to be analyzed in more detail. The aim of this cross-sectional study was to examine the influence of demographic characteristics on parenting stress from caring for a disabled child and to identify possible protective or additional stressful social factors. A total of 611 mothers and fathers of children with developmental delays, chronic diseases, or disabilities completed two questionnaires during their medical appointments at the Children's Development Center (CDC) of Leipzig University Hospital between June 2020 and February 2021. These consisted of the German versions of the Parenting Stress Index (PSI) and the Impact on Family Scale (IOFS). To determine differences between the various groups, we used parametric and non-parametric tests. Mothers and single parents are significantly more strained than fathers and non-single parents. Parents with vocational training, those who graduated with a higher-level diploma, and those within employment report a higher financial burden. While unemployed and full-time workers experience the lowest stress, parents who work part-time or exclusively take care of their child show higher levels of stress. Looking at the age of the child, parents of children of young primary school age are the most stressed, and those of infants are the least stressed. These findings suggest that mothers and single parents especially should receive more support, and parents need to be provided with more attention during their child's entry into school. Possible limitations and the influence of the COVID-19 pandemic are discussed.

11.
Medicina (Kaunas) ; 60(2)2024 Jan 26.
Artículo en Inglés | MEDLINE | ID: mdl-38399504

RESUMEN

Neuroscience applied to motor activity is a growing area that aims to understand the effects of motor activity on the structures and functions of the Central Nervous System. Attention has been paid to this multidisciplinary field of investigation by the scientific community both because it is of great importance in the treatment of many chronic diseases and because of its potential applications in the Movement Sciences. Motor activity during a developmental age is, in fact, an indispensable tool for the physical and mental growth of children, both able-bodied and disabled. Through movement, individuals can improve their physical efficiency and promote their own better health, establish relationships with the environment and others, express themselves and their emotions, form their identity and develop cognitive processes. This literature review aims, therefore, to highlight how an adequate practice of motor activity offers extraordinary possibilities for everyone in relation to learning, from the perspective of an integral development of the person, and, consequently, can raise the awareness of those involved in the training and growth, especially the youngest, towards the educational value of motor and sports activities. According to this review, and in line with the modern neuroscientific approach toward the relationships between motor activities and cognitive functions, it is possible to claim that hypokinesia tends to inhibit learning. Therefore, it now seems more topical than ever to draw attention to the need to introduce working proposals that integrate brain-based motor activity programs into the school curriculum.


Asunto(s)
Cognición , Personas con Discapacidad , Niño , Humanos , Aprendizaje , Instituciones Académicas , Ejercicio Físico
12.
Disabil Rehabil Assist Technol ; : 1-6, 2024 Feb 19.
Artículo en Inglés | MEDLINE | ID: mdl-38372226

RESUMEN

Purpose: The proposed scoping review aims to explore and map wheelchair outcome measurement instruments for children in the literature.Method: The proposed scoping review will be conducted in accordance with the Joanna Briggs Institute (JBI) methodology. The review question and eligibility criteria were developed using the PCC (population, concept, context) mnemonic as follows: (P) children manual or motorised wheelchair users (aged ≤ 18 years), (C) wheelchair outcome measurement instruments, (C) primary sources of literature. The search will be conducted in nine relevant electronic databases. including grey literature from Academic Google. Study screening, selection, and data extraction will be performed independently by two authors. A third reviewer will resolve discrepancies between the authors. General characteristics, population, feasibility, interpretability data will be extracted in accordance with the COSMIN methodology (Consensus-based Standards for the selection of health Measurement Instruments). This will encompass data pertaining to the measurement properties of the domains of reliability, validity and responsiveness. A descriptive analysis will be carried out, and the results will be classified into categories and presented in tables accompanied by a descriptive summary.Results: The results can inform future research directions, clinical practice and the development of wheelchair outcome measurement instruments. Furthermore, it will help professionals in rehabilitation and wheelchair services to find the wheelchair outcome measurement instruments according to the target population and cultural context.


IMPLICATIONS FOR REHABILITATIONThis review has the potential to enhance understanding of wheelchair outcome measurement instruments, thereby enabling rehabilitation professionals to assess the impact and progress of wheelchair use within the target population.The findings related to measurement properties may guide future research in the field of wheelchair outcome measurement instruments.Additionally it will assist clinical professionals in identifying appropriate wheelchair outcome measurement instruments based on the target population and cultural context.

13.
Eur Arch Paediatr Dent ; 25(1): 75-84, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-38281253

RESUMEN

BACKGROUND: Digit sucking is a common oral habit among many children, which involves placing the thumb/finger into the mouth, which can cause malocclusion in mixed and permanent dentition. AIM: To evaluate the efficacy of the RURS elbow guard in the management of thumb-sucking habits in children with intellectual disabilities and those without in terms of the mean duration of appliance therapy. The secondary objective was to compare the RURS elbow guard with an intraoral crib in healthy children (without intellectual disabilities) to manage the habit of thumb-sucking. DESIGN: Children with intellectual disabilities and those without between the age of 4 and 16 years were included in the study and categorised into three groups, namely group I (50 normal children; intraoral crib appliance), group II (50 normal children; RURS elbow guard) and group III (50 children with intellectual disabilities; RURS elbow guard). RESULTS: The mean duration of appliance therapy for groups I, II and III were 200.20 ± 20.43 days, 204.34 ± 20.56 days, and 218.43 ± 15.66 days, respectively (p < 0.001). The differences in the mean duration between group I and group II were statistically non-significant, with statistically significant differences between group I and group III (p < 0.001) and between group II and group III (p < 0.05). CONCLUSION: The RURS elbow guard was found to be an efficient appliance in treating thumb-sucking among children who had mild to moderate intellectual disabilities. RURS elbow guard was equally efficient as an intraoral crib appliance in managing thumb-sucking habits in children without intellectual disabilities.


Asunto(s)
Discapacidad Intelectual , Maloclusión , Niño , Humanos , Preescolar , Adolescente , Codo , Discapacidad Intelectual/complicaciones , Pulgar , Hábitos , Succión del Dedo/terapia
14.
Pflege ; 2024 Jan 31.
Artículo en Alemán | MEDLINE | ID: mdl-38293934

RESUMEN

Use of support and relief services for parents of children in need of care: Results of the FamBer observational study Abstract: Background: Parents of children in need of care in Germany can fall back on a variety of relief and support services. So far, however, there has been a lack of systematic studies and quantitative data on the use of such offers at the individual level of parents and other legal guardians. Aim: The study on the compatibility of care and work for parents with a child in need of care (FamBer; funding: Federal Ministry for Family Affairs, Senior Citizens, Women and Youth, Germany) examines the knowledge of relief and support services, their use and the perceived benefits of these offers. Methods: 1070 parents answered a multidimensional online questionnaire in the cross-sectional study that was developed based on the Kindernetzwerk Study 2 from 2013 and the German socio-economic panel (SOEP). In addition to descriptive analyses, group comparisons were carried out using Chi2, Mann-Whitney U or Kruskal-Wallis H tests. Results: 43 to 58% of parents are aware of the respective legal options for taking time off work, but only very few families make use of them. The other support offers differ significantly in terms of the level of knowledge and utilization; these vary primarily with the education of the parents and the care needs of the child. They assessed the used services for consultation and advice as only little helpful. Conclusions: Due to the study design, we cannot rule out that the findings are also based on personal characteristics of the parents and their living conditions. Nevertheless, a large number of problems (e.g. a lack of information, low using, ineffectiveness of support services) can be identified that need to be overcome.

15.
Clin Pediatr (Phila) ; 63(1): 18-31, 2024 01.
Artículo en Inglés | MEDLINE | ID: mdl-37036089

RESUMEN

The aim of this study was to determine the difficulties experienced by disabled children and their mothers due to the necessity of being at home during the coronavirus 2019 (COVID-19) process. The research is a qualitatively prepared phenomenological-type descriptive study. "Content analysis" was used in the analysis of the interview questions. Semi-structured interview technique was used as the data collection method. It was determined that the disabled child lost the skills he learned during the COVID-19 process; his health was adversely affected; there were disruptions in the education process; behavioral problems began; and he experienced social isolation. As a result, it can be said that both children with disabilities and mothers who care for them try to cope with many difficulties during the COVID-19 process and they are left alone and do not receive support during this process.


Asunto(s)
COVID-19 , Niños con Discapacidad , Niño , Femenino , Masculino , Humanos , Pandemias , Madres , Aprendizaje
16.
J Educ Health Promot ; 12: 350, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-38144027

RESUMEN

Oral health is an important aspect of general health, and is of great importance, especially in disabled children. A school is an ideal place for the implementation of preventive programs. Considering the significance of the prevention of dental caries and periodontal disease in disabled children, and the important role of teachers in the oral health promotion of students, this study aimed to assess the oral health knowledge, attitude, and performance of teachers and healthcare workers in special schools for the disabled children in Isfahan. This descriptive-analytical study evaluated the oral health knowledge, attitude, and performance of 172 teachers and healthcare workers of special schools for disabled children in Isfahan using a questionnaire. The participants were selected using census sampling. Quantitative and qualitative data were analyzed using SPSS via the Chi-square test, t-test, and Pearson's correlation coefficient at P < 0.05 level of significance. The mean score of knowledge and attitude of teachers was 72.2% and 80.5%, respectively. The mean score of knowledge of healthcare workers was significantly higher than that of teachers (P = 0.007). Age had no significant correlation with the knowledge score (P = 0.41) but was significantly correlated with the attitude score (P = 0.01). Work experience had a significant correlation with the knowledge (P = 0.02) and attitude (P = 0.005) scores. In addition, the educational level had a significant correlation with the knowledge (P < 0.001) and attitude (P = 0.007) scores. The findings of this research showed that work experience had a significant correlation with the knowledge and attitude scores, which can be due to more contact of teachers with longer work experience with disabled children and their higher perception of hygienic needs and problems of these children.

17.
Psychiatr Danub ; 35(Suppl 3): 11-16, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37994056

RESUMEN

BACKGROUND: Children with disabilities (CWDs) are often excluded from scientific research, but no precise data are available on their participation in Clinical Trials. The aim of this study was to evaluate the rates of exclusion of CWDs from recent medical research. SUBJECTS AND METHODS: The protocol of the study was designed according to Prisma-ScR guidelines. All completed interventional Clinical Trials registered on Clinicaltrials.gov between 2010 and 2020 related to the Leading 10 Level 3 causes of global Disability-adjusted life years (DALYs) for both sexes combined for all ages of the updated Global Burden of Disease Study 2019 were analysed. The exclusion criteria were considered explicit if related to the following categories: disability, physical impairment, cognitive impairment, behavioural or psychiatric disorders, language and communication impairment, sensory impairment. Any generic or poorly specified exclusion criteria or statements that left wide discretion to researchers were considered "implicit exclusion criteria". We assessed the appropriateness of explicit exclusion criteria in relation to the primary objectives of the trials and labelled them as "absolute", "relative", or "questionable". RESULTS: The trials selected according to the inclusion criteria of the scoping review were 328; 166 (50.6%) were pediatric-only studies, and 162 (49.4%) trials comprising subjects of all ages. Explicit exclusion criteria were found in 82 trials (25%) and the disability category most frequently excluded was "Behavioural or psychiatric disorders" present in 46 trials (56.1%). Explicit exclusion criteria were considered "relative" in over 90% of the selected studies. Implicit exclusion criteria were present in 153 trials (46.6%) and the number and percentage of studies with at least one explicit or implicit exclusion criterion were 193 and 58.8% respectively. CONCLUSIONS: This study highlights a high rate of exclusion of CWDs from medical research and the need for an inclusive approach that comprises the study design and any necessary adaptations for specific needs.


Asunto(s)
Investigación Biomédica , Disfunción Cognitiva , Niños con Discapacidad , Masculino , Femenino , Humanos , Niño , Proyectos de Investigación
18.
Health Place ; 84: 103141, 2023 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-37951182

RESUMEN

During recent decades, there has been a growing consideration of the role of blue and green spaces on mental health of children, but there is insufficient attention in the literature to the mental health of children with disabilities. This paper presents an overview of the evidence on how blue and green spaces affect the mental health of children with various disabilities. A database search found twenty studies eligible for the review, after several consecutive screening stages. Most studies used a cross-sectional design and were carried out in Europe. The results consistently indicate that blue and green space can reduce emotional, behavioral, and social problems in disabled children. A protective association was found between the level of blue or greenness and depressive and anxiety symptoms. Moreover, in most of the studies there were no significant changes in the result after adjusting for socioeconomic confounders. Generally, there is an identified need for more short-term exposure studies in this area, focusing on the impact of landscape design elements on mental health of disabled children. The findings of this scoping review call on urban planners, health care workers and decision makers to consider appropriate measures and interventions providing more blue and green space exposure to disabled children.


Asunto(s)
Niños con Discapacidad , Salud Mental , Niño , Humanos , Parques Recreativos , Estudios Transversales , Europa (Continente)
19.
J Indian Soc Pedod Prev Dent ; 41(3): 234-238, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37861638

RESUMEN

Background: Cerebral palsy (CP) is primarily a neuromotor disorder that affects the development of movement, muscle tone, and posture. Objective: This qualitative study explores the underlying barriers in maintaining oral health from the perspective of the caregivers or parents. Materials and Methods: Focus group discussion was conducted with the parents or caregivers in the National Institute for Empowerment of Persons with Multiple Disabilities (NIEPMD), Muttukadu, Chennai. Data were collected from seven participants. Thematic analysis identified key themes using NVivo software. Results: The discussion on barriers to maintain oral health faced by parents of children with CP identified a collation of three key themes: behavioral challenges, inhibited social and communication skills, and parental dependence. Conclusion: Oral health professionals should aim to raise awareness among health-care professionals to work toward reducing the barriers to oral health care that these populations currently experience.


Asunto(s)
Cuidadores , Parálisis Cerebral , Niño , Humanos , Salud Bucal , India , Padres
20.
Front Public Health ; 11: 1098908, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37780433

RESUMEN

Using the social support theory for reference, a subject-object influencing mechanism model of China's rehabilitation assistance system for disabled children is built based on the survey data on 1,698 disabled children in 243 designated rehabilitation institutions in Hu'nan Province as well as the topic of the assessment and optimization of the rehabilitation assistance system for disabled children. The analysis using the structural equation modeling reveals that the inclusive welfare effect of the rehabilitation assistance system for disabled children has emerged, and disabled children receiving free rehabilitation in the designated institutions have achieved good rehabilitation results as a whole, however, disabled children of different age groups have generational differences in the rehabilitation effects, and the preferential aspect of the system needs to be strengthened. Government support, institutional support, and social support have positive non-equilibrium effects in enhancing the rehabilitation effects of disabled children. Institutional support plays a partial mediating role between government support, family support, and disabled children's rehabilitation effects, showing that the current social support system for the rehabilitation assistance of disabled children is experiencing structural, social and kernel changes, to evolve from the traditional closed and disconnected one-way resource support to open, coordinated, and interactive multi-support, and gradually become a comprehensive and efficient interactive support system with families as the foundation, institutions as the main body, and the government as the core.


Asunto(s)
Niños con Discapacidad , Niño , Humanos , Niños con Discapacidad/rehabilitación , Pueblos del Este de Asia , Bienestar Social , Apoyo Social , Apoyo Familiar
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