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1.
Ciênc. Saúde Colet. (Impr.) ; 29(8): e06802023, ago. 2024. tab, graf
Artigo em Português | LILACS-Express | LILACS | ID: biblio-1569051

RESUMO

Resumo Objetivou-se identificar fatores associados à atenção à saúde infantil na atenção primária à saúde (APS), na perspectiva das ações preconizadas pela Rede de Cuidados à Pessoa Deficiência (RCPCD), quanto à identificação precoce de deficiências e acompanhamento do desenvolvimento infantil. Trata-se de estudo transversal, multicêntrico, realizado em oito estados brasileiros. A coleta de dados envolveu a aplicação de questionário estruturado com profissionais de saúde de nível superior atuantes na APS, com amostra aleatória estratificada por estado e município. Foram realizadas regressões de Poisson com variância robusta para duas variáveis resposta. Entre os 1.488 trabalhadores que compuseram a amostra final, 63,6% realizam ações de identificação precoce de deficiências e 49% efetuam acompanhamento do desenvolvimento infantil. As equipes de Saúde da Família (eSF) identificam e acompanham mais do que as equipes do modelo tradicional, e os Núcleos Ampliados de Saúde da Família e Atenção Básica realizam mais ações de acompanhamento do que essas equipes. Conclui-se que os fatores mais associados com a identificação e o acompanhamento de crianças com deficiências na APS foram aqueles relativos à formação profissional, à eSF e ao conhecimento de normativas relativas à RCPCD.


Abstract The aim of this study was to identify factors associated with early identification of disabilities and developmental follow-up of children in primary health care (PHC) services under the Care Network for People with Disabilities (RCPCD). We conducted a cross-sectional study using data from a multicenter study undertaken in eight states. The data were collected using a structured questionnaire answered by PHC professionals with degree-level qualifications selected using random sampling and stratified by state and municipality. Poisson regression with robust variance was performed for the two outcomes. Of the 1,488 workers in the final sample, 63.6% performed early identification of disabilities and 49% provided developmental follow-up. Family health teams performed early identification of disabilities and follow-up more than traditional model teams, and expanded family health teams provided developmental follow-up more than both these teams. The factors that showed the strongest association with identification and developmental follow-up were profession, working in a family health team and knowledge of the RCPCD.

2.
Int J Clin Pediatr Dent ; 17(3): 255-259, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-39144522

RESUMO

Background: Mentally disabled children have been found to have poor oral hygiene, a greater prevalence of periodontal disease, and higher caries prevalence. Flossing is an important oral hygiene skill adjacent to toothbrushing in plaque removal than brushing alone in children. GumChucks is a novel flossing device designed to assist children with easy and proper flossing techniques. To compare the efficacy of the GumChucks flossing system and string floss (SF) for plaque removal in mentally disabled children. Materials and methods: Participants were randomly assigned to either GumChucks or SF. At baseline, a toothbrushing and flossing demonstration was given to all the participants. Gingival index (GI) and plaque index (PI) were recorded at baseline, 1 week, and 4 weeks postusage. Results: Overall, there was a significant reduction in GI and PI after first use with children using GumChucks compared to SF floss. After 1 week and 4 weeks of postusage, children in the GumChucks group demonstrated significantly greater improvement in GI (1.03 ± 0.60), (1.12 ± 0.66), and PI (0.97 ± 0.53), (1.10 ± 0.54) from baseline p ≤ 0.05. Conclusion: GumChucks was an effective alternative plaque removal, with recommended caretakers' supervision for mentally disabled children. How to cite this article: Takle TV, Vishwakarma PY, Dodamani AS, et al. Comparative Assessment of the Efficacy of the GumChucks Flossing System and String Floss for Plaque Removal in Mentally Disabled Children: A Randomized Clinical Trial. Int J Clin Pediatr Dent 2024;17(3):255-259.

3.
Arch Suicide Res ; : 1-18, 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38949265

RESUMO

OBJECTIVE: There is a growing body of evidence on suicide risk in family carers, but minimal research on parents caring for children with disabilities and long-term illnesses. The aim of this study was to conduct the first dedicated research on suicide risk in parent carers and identify: (1) the number of parent carers experiencing suicidal thoughts and behaviors, and (2) the risk and protective factors for suicidality in this population. METHOD: A cross-sectional survey of parent carers in England (n = 750), co-produced with parent carers. Suicidal thoughts and behaviors were measured with questions from the Adult Psychiatric Morbidity Survey. Frequencies summarized the proportion of carers experiencing suicidal thoughts and behaviors. Logistic regressions identified risk and protective factors. RESULTS: 42% of parents had experienced suicidal thoughts and behaviors while caring for a disabled or chronically ill child. Only half had sought help for these experiences. Depression, entrapment, dysfunctional coping, and having a mental health diagnosis prior to caring, were significant risk factors. CONCLUSION: Parent carers contemplate suicide at levels that exceed those of other family carers and the general public. There is an urgent need, in policy and practice, to recognize parent carers as a priority group for prevention and intervention.


This is the first dedicated study of suicide risk in parent carers.More than 40% of parents had considered suicide while caring for a disabled or chronically ill child.The risk factors for suicidal ideation in parent carers were depression, entrapment, dysfunctional coping strategies, and having a mental health diagnosis prior to becoming a carer.Parent carers may be a high-risk group for suicide and need urgent support.

4.
Front Psychol ; 15: 1389995, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38882520

RESUMO

Objective: To investigate patterns of parenting stress and access to sufficient informal and formal support among parents of children with disabilities. To explore whether child cognitive level, conduct problems and the need of language interpretation in contacts between parents and professionals are associated with patterns of parenting stress and support. Method: Parents (N = 140) of children with disabilities in Sweden completed a questionnaire about parenting stress and support. Patterns of three variables-parenting stress and access to sufficient informal and formal support-were investigated using cluster analysis. The relationship of child cognitive level, level of conduct problems and of language interpretation needs between parents and professionals to cluster membership was explored using multinomial logistic regression. Results: Five different clusters of parenting stress and support emerged. Parents in cluster 1 had lower than sample mean ratings on all three variables. Cluster 2 had elevated parenting stress, cluster 3 had elevated insufficient informal support and cluster 4 had elevated insufficient formal support. Cluster 5 had elevated ratings on all three variables. Greater child cognitive difficulties increased the likelihood of parent membership in cluster 2 (elevated stress), cluster 3 (elevated insufficient informal support), or cluster 5 (elevated ratings on all variables). Child conduct problems increased the likelihood of membership in cluster 2 (elevated stress) or cluster 5 (elevated ratings on all variables). No relationship between language interpretation needs and cluster membership was found. Conclusions: Patterns of parenting stress and sufficiency of support, and their associations with child characteristics, vary substantially. However, families of children with conduct problems experiencing elevated parenting stress in combination with insufficient informal and formal support, may be particularly vulnerable. The results of the current study highlight the clinical importance of exploring and identifying individual parenting stressors and perceived levels of support, to be able to adapt services to better suit a variety of needs, and thus promote equitable care.

5.
Scand J Occup Ther ; 31(1): 2348816, 2024 Apr 25.
Artigo em Inglês | MEDLINE | ID: mdl-38728597

RESUMO

BACKGROUND: Preliminary evidence of the content validity of the simplified Chinese version of 'Picture My Participation' (PMP-C; Simplified) items and reliability of the subscale attendance for the effectiveness of the use with children and youth in mainland China has been collected. However, evidence of construct validity for the instrument is not yet available. AIM: To explore the construct validity of the attendance scale in PMP-C (Simplified). METHODS: A cross-sectional study using convenience sampling was conducted using PMP-C (Simplified) with a picture-supported interview for 290 children and youths aged 5-21 with and without ID in urban and rural areas of mainland China. Exploratory factor analysis (EFA) was performed using the principal component analysis (PCA) to analyse the resulting data. RESULTS: The EFA extracted five factors with eigenvalues greater than one and the cumulative contribution rate of factors accounted for 51.62% of the variance. All items had factor loadings above 0.50. The five subcomponents included: organised activities, social activities, taking care of others, family life activities and personal care and development activities. CONCLUSION: The results of the factor analysis support the construct validity of the PMP-C (Simplified) attendance scale. It provides further psychometric evidence that PMP-C (Simplified) is a sound measure to assess participation for children and youths in mainland China.


Assuntos
Psicometria , Humanos , Masculino , Estudos Transversais , Feminino , China , Criança , Adolescente , Reprodutibilidade dos Testes , Adulto Jovem , Análise Fatorial , Inquéritos e Questionários , Pré-Escolar , Participação Social , Terapia Ocupacional
6.
Arch Psychiatr Nurs ; 49: 106-112, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38734445

RESUMO

OBJECTIVE: This randomized controlled study focused on mothers of children with disabilities to determine the effect of a training program on family stress and life satisfaction. METHOD: The sample consisted of 52 mothers of children with disabilities (intervention group = 26 and control group = 26). The intervention group participated in a five-session training program on coping mechanisms and life satisfaction. Data were collected using the Questionnaire On Resource And Stress (QRS-FT) and the Satisfaction with Life Scale (SWLS). RESULTS: After the intervention, the mean life satisfaction scores of the intervention group participants increased (p < 0.05), while their mean total score of family stress decreased (p > 0.05). In the control group, the mean life satisfaction scores decreased (p > 0.05), while the mean total score of family stress increased (p < 0.05). CONCLUSION: The intervention helped mothers of children with disabilities experience more satisfaction with life and less family stress. Authorities should consider the outcomes of educational intervention studies and formulate training programs for mothers of children with disabilities. PRACTICAL IMPLICATIONS: Nurses can use interactive educational programs as nursing interventions to help mothers of children with disabilities experience less family stress and more life satisfaction.


Assuntos
Adaptação Psicológica , Crianças com Deficiência , Mães , Satisfação Pessoal , Estresse Psicológico , Humanos , Mães/psicologia , Mães/educação , Feminino , Crianças com Deficiência/psicologia , Estresse Psicológico/psicologia , Adulto , Inquéritos e Questionários , Criança , Masculino
7.
Int J Qual Stud Health Well-being ; 19(1): 2356927, 2024 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38801136

RESUMO

PURPOSE: This study's purpose was to investigate how nurses, using a picture schedule, enable or hinder the realization of disabled children's agency in the preparation for an MRI procedure carried out under general anaesthesia. METHODS: A qualitative observation study was used to explore the interaction of nurses and children. The data consisted of video recordings of 25 preparation situations of 3 (3-8 years old) children (with challenges in communication and/or cognitive skills) with 4 nurses. Verbal and nonverbal communication was analysed with interventionist applied conversation analysis. RESULTS: What was most crucial was how the picture schedule was used during the interaction. Reciprocal information sharing, responding to the child's initiatives by negotiating and allowing the child to take physical action with the picture schedule enabled the realization of the child's agency. CONCLUSIONS: The preparation process should aim to help the child prepare in his/her own way. The preparation tools should encourage reciprocal interaction in informing and in responding to the children's initiatives. The preparation practices should include enough time for the child's initiatives and physical participation. The results can be used in assessing preparation tools and how they are used from the perspective of the child's agency.


Assuntos
Anestesia Geral , Crianças com Deficiência , Pesquisa Qualitativa , Humanos , Criança , Pré-Escolar , Feminino , Masculino , Comunicação , Relações Enfermeiro-Paciente , Enfermeiras e Enfermeiros , Gravação em Vídeo
8.
Spec Care Dentist ; 2024 May 05.
Artigo em Inglês | MEDLINE | ID: mdl-38706153

RESUMO

OBJECTIVES: Children, especially the mentally disabled, are generally incapable of obtaining adequate oral hygiene levels by manual brushing due to their lack of knowledge about oral hygiene and their limited motor skills. In order to handle those limited skills, different designs of manual and electric toothbrushes are developed and put on markets. The aim of this study was to evaluate the effectiveness of pulsating toothbrushes with easy-to-use properties, against conventional toothbrushes and to analyze their benefits on mentally disabled pediatric patients. METHODS: Thirty-one healthy and 31 mentally disabled children (aged between 7 and 12) participated in this study. The effectiveness of three different toothbrushes (Oral-B Pulsar, Colgate 360° Micro Sonic Power, Oral-B Stages 3) was investigated with a cross-over study design. DMFT, dft, modified sulcus bleeding index (MOD-SBI), approximal plaque index (API) and Green and Vermillion simplified oral hygiene index (G&V OHI-S) measurements are performed to evaluate the oral hygiene status. RESULTS: In the mentally disabled group the manual toothbrush for MOD-SBI, and Colgate 360° Micro Sonic Power for API showed the best results respectively. CONCLUSION: The ability of tooth brushing was improved both in healthy and in disabled children during this 5 months study. Unfortunately, it was not obvious in disabled children. Persevering training for tooth brushing might be the most important regardless of the kind of toothbrush.

9.
Community Dent Oral Epidemiol ; 52(3): 336-343, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38644526

RESUMO

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.


Assuntos
Renda , Aceitação pelo Paciente de Cuidados de Saúde , Humanos , Feminino , Masculino , Estudos Transversais , Adulto , Singapura/epidemiologia , Renda/estatística & dados numéricos , Criança , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Adolescente , Adulto Jovem , Pré-Escolar , Pessoa de Meia-Idade , Assistência Odontológica para a Pessoa com Deficiência/economia , Assistência Odontológica para a Pessoa com Deficiência/estatística & dados numéricos , Pessoas com Deficiência/estatística & dados numéricos
10.
J Pediatr Nurs ; 77: e139-e149, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38599999

RESUMO

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.


Assuntos
Disfunção Cognitiva , Manejo da Dor , Pais , Relações Profissional-Família , Pesquisa Qualitativa , Humanos , Criança , Masculino , Feminino , Pais/psicologia , Manejo da Dor/enfermagem , Manejo da Dor/métodos , Disfunção Cognitiva/enfermagem , Canadá , Enfermagem Pediátrica , Medição da Dor , Adulto
11.
Arch Argent Pediatr ; : e202310257, 2024 Apr 25.
Artigo em Inglês, Espanhol | MEDLINE | ID: mdl-38656786

RESUMO

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.

12.
Heliyon ; 10(7): e28241, 2024 Apr 15.
Artigo em Inglês | MEDLINE | ID: mdl-38560242

RESUMO

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.

13.
Int J Paediatr Dent ; 2024 Apr 22.
Artigo em Inglês | MEDLINE | ID: mdl-38646678

RESUMO

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.

14.
Disabil Rehabil Assist Technol ; : 1-10, 2024 Mar 27.
Artigo em Inglês | MEDLINE | ID: mdl-38533741

RESUMO

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.

15.
J Clin Pediatr Dent ; 48(2): 163-172, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38548646

RESUMO

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.


Assuntos
Cárie Dentária , Saúde Bucal , Adolescente , Criança , Pré-Escolar , Humanos , Índice de Massa Corporal , Estudos de Casos e Controles , Atenção à Saúde , Poder Familiar , Qualidade de Vida , Arábia Saudita
16.
Mol Genet Metab Rep ; 38: 101059, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38469094

RESUMO

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.

17.
Medicina (Kaunas) ; 60(2)2024 Jan 26.
Artigo em Inglês | MEDLINE | ID: mdl-38399504

RESUMO

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.


Assuntos
Cognição , Pessoas com Deficiência , Criança , Humanos , Aprendizagem , Instituições Acadêmicas , Exercício Físico
18.
Disabil Rehabil Assist Technol ; : 1-6, 2024 Feb 19.
Artigo em Inglês | MEDLINE | ID: mdl-38372226

RESUMO

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.

19.
Children (Basel) ; 11(2)2024 Feb 13.
Artigo em Inglês | MEDLINE | ID: mdl-38397351

RESUMO

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.

20.
J Prev Med Public Health ; 57(2): 157-166, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38374710

RESUMO

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.


Assuntos
Médicos , Encaminhamento e Consulta , Humanos , Criança , Índia , Grupos Focais , Modalidades de Fisioterapia , Pesquisa Qualitativa
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