Prevalence and Determinants of Ocular Disorders among in-School Children with Physical and Mental Disabilities in Osun State, South West Nigeria.

PURPOSE: This study set out to determine the prevalence and the factors contributing to ocular disorders among children with physical and mental disabilities, who represent a vulnerable group in Osun State. METHODOLOGY: This was a cross-sectional study among children with physical and mental disabilities aged 5-17 years using a multistage sampling technique. Demographics, presence of ocular symptoms and determinants of ocular disorders were noted. Distant visual acuities were measured; refraction and ocular examination were performed. Appropriate drug treatment, prescribed spectacle or low vision aids were dispensed as necessary, at subsidized rates. RESULTS: Of 189 children enrolled, 103(54.5%) were males and 86(45.5%) were females, with male to female ratio of 1.2:1. Mean age was 14.7 ± 0.45 years and 28/189 (14.8%) had ocular disorders in either eye. Some of the participants had multiple pathologies. The commonest identified visual disorder was refractive error (11.1%). There was a statistically significant ocular disorder determinant among most mothers of respondents (82.1%) who had ocular disorders and did not receive antenatal care in the hospital, p<0.05. Only 28.6% of children who had ocular disorders were fully immunized. CONCLUSION: The majority of mothers of children with ocular disorders did not receive antenatal care in the hospital. Health education on the importance of early antenatal care in the hospital is advocated to reduce the occurrence of ocular disorders. Early assessment and correction of ocular problems will prevent unnecessary visual impairment in these vulnerable children.

OBJECTIF: Cette étude visait à déterminer la prévalence et les facteurs contribuant aux troubles oculaires chez les enfants présentant des handicaps physiques et mentaux, qui représentent un groupe vulnérable dans l'État d'Osun. MÉTHODOLOGIE: Il s'agissait d'une étude transversale menée auprès d'enfants atteints de handicaps physiques et mentaux âgés de 5 à 17 ans, utilisant une technique d'échantillonnage à plusieurs niveaux. Les données démographiques, la présence de symptômes oculaires et les déterminants des troubles oculaires ont été notés. Les acuités visuelles à distance ont été mesurées ; la réfraction et l'examen oculaire ont été effectués. Un traitement médicamenteux approprié, des lunettes prescrites ou des aides à la basse vision ont été délivrés au besoin, à des tarifs subventionnés. RÉSULTATS: Sur 189 enfants inscrits, 103 (54,5 %) étaient des garçons et 86 (45,5 %) étaient des filles, avec un ratio garçons/filles de 1,2:1, âge moyen de 14,7 ± 0,45 ans ; tandis que 28/189 (14,8 %) présentaient des troubles oculaires dans l'un ou l'autre des yeux. Certains participants avaient plusieurs pathologies. Le trouble visuel le plus fréquemment identifié était l'erreur réfraction (11,1 %). Il y avait un déterminant de trouble oculaire statistiquement significatif chez la majorité des mères des répondants (82,1 %) qui avaient des troubles oculaires et n'avaient pas reçu de soins prénatals à l'hôpital p<0,05. Seulement 28,6 % des enfants présentant des troubles oculaires étaient entièrement immunisés. CONCLUSION: La plupart des mères d'enfants atteints de troubles oculaires n'ont pas reçu de soins prénatals à l'hôpital. Une éducation sanitaire sur l'importance des soins prénatals précoces à l'hôpital est préconisée afin de réduire l'occurrence des troubles oculaires. L'évaluation précoce et la correction des problèmes oculaires préviendront une atteinte visuelle inutile chez ces enfants vulnérables. MOTS-CLÉS: Trouble oculaire, Prévalence, Enfants en âge scolaire, Handicaps physiques et mentaux.

An Expanded Approach to the Ascertainment of Children and Youth With Special Health Care Needs.

OBJECTIVE: To describe the prevalence, characteristics, and health-related outcomes of children with diagnosed health conditions and functional difficulties who do not meet criteria for having a special health care need based on the traditional scoring of the Children with Special Health Care Needs (CSHCN) Screener. METHODS: Data come from the 2016 to 2021 National Survey of Children's Health (n = 225 443). Child characteristics and health-related outcomes were compared among 4 mutually exclusive groups defined by CSHCN Screener criteria and the presence of both conditions and difficulties. RESULTS: Among children who do not qualify as children and youth with special health care needs (CYSHCN) on the CSHCN Screener, 6.8% had ≥1 condition and ≥1 difficulty. These children were more likely than CYSHCN to be younger, female, Hispanic, uninsured, privately insured, living in a household with low educational attainment, have families with more children and a primary household language other than English. After adjustment, non-CYSHCN with ≥1 conditions and ≥1 difficulty were less likely than CYSHCN, but significantly more likely than other non-CYSHCN, to have ≥2 emergency department visits, have unmet health care needs, not meet flourishing criteria, live in families that experienced child health-related employment impacts and frustration accessing services. Including these children in the calculation of CYSHCN prevalence increases the national estimate from 19.1% to 24.6%. CONCLUSIONS: Approximately 4 million children have both a diagnosed health condition and functional difficulties but are not identified as CYSHCN. An expanded approach to identify CYSHCN may better align program and policy with population needs.

Postoperative Morbidity after Dental Treatment under General Anesthesia in Children with and without Disabilities.

Background and Objectives: General anesthesia induces reversible unconsciousness, eliminating sensation and enabling painless medical procedures. Vital for dental care, it addresses patients with medical conditions, those needing extensive procedures, and those unable to cooperate due to fear. Dental care for patients with disabilities is a significant unmet need, with studies showing increased oral disease prevalence. This research aims to analyze postoperative morbidity both in healthy and disabled children undergoing dental procedures under general anesthesia. Materials and Methods: This study involved 96 children aged 3 to 15 with dental caries. Two groups were formed: the control group (CTL) (52.94%) included healthy patients requiring general anesthesia due to unsatisfactory cooperation, and the other group included children with physical or intellectual disabilities (CD) (47.96%). Postoperative complications were monitored 1 h after the procedure and 1, 3, 7, and 14 days after the procedure by contacting parents/caregivers by phone. The intensity of postoperative pain was assessed using the Wong-Baker faces pain rating scale. General anesthesia was conducted following a standardized protocol for dental procedures. Results: CTL patients complained more often about postoperative pain 1 h after the procedure (p = 0.03). One day after the procedure, oral bleeding (p = 0.04), fever (p = 0.009), and diarrhea (p = 0.037) occurred more often in CD. In the same period, sore throat appeared more often in CTL (p = 0.036). Three days after the dental treatment, there were statistically significant increases in the occurrence of agitation (p = 0.043) and constipation (p = 0.043) in CD. Seven days later, CD demonstrated a higher occurrence of agitation (p = 0.037). According to the Wong-Baker faces pain rating scale, CTL experienced more frequent and intense pain. Conclusions: CD more frequently reported complications like oral bleeding, fever, and diarrhea. In contrast, the CTL group more often reported pain-related symptoms. The conclusion underscores the need for a pain control protocol for CD and emphasizes the importance of frequent monitoring to prevent unwanted consequences during tooth restoration under general anesthesia.

Deaf and hearing children: A comparison of face perception.

Deaf and hearing adults perceive faces differently. This study investigates whether these differences are acquired during childhood development. We characterized facial perception in deaf and hearing children aged 7-17 using a perceptual discrimination task. Configural and featural information was manipulated in the eye and mouth facial regions. Participants were asked whether two faces presented simultaneously were different. Deaf and hearing children performed better in featural than configural discriminations and in mouth than eye discriminations. Compared with children with typical hearing, deaf children performed better in featural and mouth judgments but had longer reaction times with strongest effects at 7-8 and 13-14 years old. Type and location contributed jointly in deaf children's face perception with different configural but similar featural discriminations in mouth and eye locations. However, children with typical hearing showed different featural and configural judgments in both locations. Thus, featural and configural information effects on location processing differ between the two groups.

Epidemiology of eye diseases among children with disability in rural Bangladesh: a population-based cohort study.

AIM: To describe the epidemiology of eye diseases among children with disability in rural Bangladesh. METHOD: We established a population-based cohort of children with disability using the key informant method. Children younger than 18 years with disability (i.e. physical, visual, hearing, speech, epilepsy) were included. We used detailed ophthalmological assessments following World Health Organization (WHO) protocols by a multidisciplinary team including an ophthalmologist, optometrist, physician, and physiotherapist. Visual impairment, blindness, and severe visual impairment (SVI) were defined by following WHO categories. RESULTS: Between October 2017 and February 2018, 1274 children were assessed (43.6% female; median [interquartile range] age 9y 10mo [6y -13y 7mo]). Overall, 6.5% (n=83) had blindness/SVI, and 5.6% (n=71) had visual impairment. In the group with blindness/SVI, 47% (n=39) had cortical blindness; of those, 79.5% (n=31) had cerebral palsy (CP). The other main anatomical sites of abnormalities in this group included lens (13.3%, n=11), cornea (10.8%, n=9), and optic nerve (9.6%, n=8). In the group with visual impairment, 90.1% (n=64) had refractive error. Overall, 83.1% (n=69) and 78.8% (n=56) of those with blindness/SVI and visual impairment had avoidable causes. Most children with blindness/SVI and visual impairment lacked access to education. INTERPRETATION: The burden of blindness/SVI/visual impairment is high among children with disability in rural Bangladesh, mostly due to avoidable causes. Overrepresentation of CP and cortical blindness in the group with blindness/SVI and refractive error in the group with visual impairment highlights the need for integration of ophthalmology assessment, eye care, and refraction services in comprehensive health care for children with disability including CP in rural Bangladesh.

Neurological impairment and disability in children in rural Kenya.

AIM: To investigate geographical change over time in the burden of neurological impairments in school-aged children in a demographic surveillance area. METHOD: We investigated changes in neurological impairment prevalence in five domains (epilepsy and cognitive, hearing, vision, and motor impairments) using similar two-phase surveys conducted in 2001 (n=10 218) and 2015 (n=11 223) and determined changes in location-level prevalence, geographical clustering, and significant risk factors for children aged 6 to 9 years (mean 7y 6mo, SD 1y) of whom 50.4% were males. Admission trends for preterm birth, low birthweight (LBW), and encephalopathy were determined using admission data to a local hospital. RESULTS: Overall prevalence for any neurological impairment decreased from 61 per 1000 (95% confidence interval [CI] 48.0-74.0) in 2001 to 44.7 per 1000 (95% CI 40.9-48.6) in 2015 (p<0.001). There was little evidence of geographical variation in the prevalence of neurological impairments in either survey. The association between neurological impairments and some risk factors changed significantly with year of survey; for example, the increased association of adverse perinatal events with hearing impairments (exponentiated coefficient for the interaction=5.94, p=0.03). Annual admission rates with preterm birth (rate ratio 1.08, range 1.07-1.09), LBW (rate ratio 1.08, range 1.06-1.10), and encephalopathy (rate ratio 1.08, range 1.06-1.09) significantly increased between 2005 and 2016 (p<0.001). INTERPRETATION: There was a significant decline in the prevalence of neurological impairments and differential changes in the associations of some risk factors with neurological impairments over the study period. Limited geographical variation suggests that similar interventions are appropriate across the defined area.

The Impact of the COVID-19 Pandemic on Children With Special Needs: A Descriptive Study.

Amid the COVID-19 crisis, children with special needs may have challenges. To determine emotional and behavioral challenges, 116 children aged 4 to 6 years, who received special education, were evaluated. COVID-19 negatively affected the families at a rate of 94.6%; 76.5% of the children's daily routines were worsened. Although the one-on-one time duration with the mother and father increased (73.5% and 66.7%), reading books (40.6%), play (17.2%), and overall activity durations (25.7%) decreased. The median screen time increased from 1 to 3 hours. According to the families, there was a regression in development in 18.8% of children. Special education practices at home were ceased by 17.2% of families, and a significant difference was found between the groups with and without regression in development in terms of the frequency of continuing special education at home. The development of children with special needs is an ongoing urgent situation; thus, besides protecting and promoting physical health during the pandemic, families and children should also be supported for developmental needs.

Children with special health care needs and mothers' anxiety/depression: Findings from the Tokyo Teen Cohort study.

AIM: Children with special health care needs (CSHCN) are those who require more care for their physical, developmental, or emotional differences than their typically developing peers. Among a wide range of burdens that caregivers of CSHCN experience, the mental burden of caregivers is still not well investigated. This study aimed at examining the relationship between caring for CSHCN and mothers' anxiety/depression. METHODS: This study used data from the Tokyo Early Adolescence Survey, a population-based cross-sectional survey. Using screening questionnaires, we evaluated the prevalence of CSHCN and identified their primary caregivers. Focusing on mothers as caregivers, we analyzed the relationship between having CSHCN and mothers' anxiety/depression, and between the severity of children's condition and mothers' anxiety/depression. We further determined what mediates these relationships using path analyses. RESULTS: Among 4003 participants, we identified 502 CSHCN (12.5%), and 93% of responding caregivers were mothers. We found that mothers with CSHCN were significantly more anxious/depressed than those without CSHCN, which was closely related to the severity of children's condition. The mediation effect of social support on the relation between CSHCN and mothers' anxiety/depression was statistically significant. CONCLUSION: Mothers of CSHCN were more anxious/depressed than other mothers in this study. Social support was indicated to have a significant mediating effect on the relationship between CSHCN and mothers' anxiety/depression. Our results suggest that considering ways to offer social support may effectively relieve the mental stress experienced by mothers of CSHCN.

[Cancer in children with intellectual disabilities: Questioning and ethical issues]. / Cancer chez un enfant porteur de handicap intellectuel : questionnement et enjeux éthiques.

The Parents and Caregivers group in the face of ethics in pediatrics of the Île-de-France Ethics Area wondered about the association of the words Disability and Cancer by focusing on the study of the course of children with intellectual disability, treated for cancer. These situations are exceptional, the number of cases in France must not be more than fifty per year. We gathered the testimony of five families of children using a semi-directive survey taking up the journey from birth, announcement of the handicap, the diagnosis of cancer and its treatment. The verbatim show that each story is unique and rich in lessons, despite the feeling of "double penalty": "He did not deserve this, a handicap plus cancer is a lot for one person", "the shot moreover." A healthcare team was also interviewed and raised an additional question: "First, the double penalty… then, what's the point?" Through these testimonies, we sought to question the ethical principles of care, which can be shaken up in these extraordinary supported.

Children With Special Health Care Needs and Forgone Family Employment.

BACKGROUND: Family income is known to affect child health, but this relationship can be bidirectional. We sought to characterize this relationship by quantifying forgone family employment (FFE) due to a child's health condition in families of children with special health care needs (CSHCN) with updated figures. METHODS: We conducted a secondary data analysis from the 2016-2017 National Survey of Children's Health. CSHCN with previously employed caregivers were included (N = 14 050). FFE was defined as any family member having stopped work and/or reduced hours because of their child's health or health condition. Child, caregiver, and household characteristics were compared by FFE status. Logistic regression analysis was conducted to evaluate the association between hours of medical care provide by a family member and FFE. US Bureau of Labor Statistics reports were used to estimate lost earnings from FFE. RESULTS: FFE occurred in 14.5% (95% confidence interval [CI] 12.9%-16.1%) of previously employed families with CSHCN and was 40.9% (95% CI 27.1%-54.7%) for children with an intellectual disability. We observed disproportionately high FFE among CSHCN who were 0 to 5 years old and of Hispanic ethnicity. We found a strong association between FFE and increasing hours of family-provided medical care, with an adjusted odds ratio (aOR) of 1.72 (95% CI 1.25-2.36) for <1 hour per week (compared with 0 hours), an aOR of 5.96 (95% CI 4.30-8.27) for 1 to 4 hours per week, an aOR of 11.89 (95% CI 6.19-22.81) for 5 to 10 hours per week, and an aOR of 8.89 (95% CI 5.26-15.01) for >10 hours per week. Lost earnings for each household with FFE were estimated at ∼$18 000 per year. CONCLUSIONS: With our findings, we highlight the need to implement programs and policies that address forgone income experienced by families of CSHCN.

Assessment of Have Problems and Care Burdens of Mothers with Handicapped Children in COVID-19 Pandemic.

In the study, it was aimed to evaluate the problems and care burden of mothers who have a handicapped child in the pandemic process. The population of the descriptive study consisted of the mothers of the children who came to the rehabilitation center (n = 230), and the sampling consisted of the mothers who wanted to participate in the study (n = 216). The research data were collected through social media and the data were analyzed using the mean, standard deviation, percentage and frequency measurements, independent sample t test, Oneway anova, Kruskal wallis tests in the SPSS program. In the study, Burden Interview Scale (BIS) scores of the mothers who stated that the educational status of their child was adversely affected in the pandemic, stated that they were worried that there would be someone to take care of my child if I died, stated that the child's health checks were interrupted, stated that they did not send their child to school due to the fear of COVID-19, and reported that they had a problem in reaching the health institution was determined were significantly higher than. Mothers with handicapped children stated that their children experienced difficulties in important situations such as health checks and educations during the pandemic period. In addition, it was found that the care burden of these mothers was higher. During the pandemic period, it is necessary to make and support new regulations in accordance with the disability of these special children with state policies as well as healthcare professionals.

Prevalence of Headache Days and Disability 3 Years After Participation in the Childhood and Adolescent Migraine Prevention Medication Trial.

Importance: Migraine is a common neurological disease that often begins in childhood and continues into adulthood; approximately 6 million children and adolescents in the United States cope with migraine, and many frequently experience significant disability and multiple headache days per week. Although pharmacological preventive treatments have been shown to offer some benefit to youth with migraine, additional research is needed to understand whether and how these benefits are sustained. Objective: To survey clinical status of youth with migraine who participated in the 24-week Childhood and Adolescent Migraine Prevention (CHAMP) trial over a 3-year follow-up period. Design, Setting, and Participants: This survey study used internet-based surveys collected from youth ages 8 to 17 years at 3, 6, 12, 18, 24, and 36 months after completion of the CHAMP trial, which randomized participants to amitriptyline, topiramate, or placebo. At the end of the trial, the study drug was stopped, and participants received clinical care of their choice thereafter. The CHAMP trial was conducted between May 2012 and November 2015, and survey follow-up was conducted June 2013 to June 2018. Participants in this survey study were representative of those randomized in the trial. Data were analyzed from March 2020 to April 2021. Exposures: Survey completion. Main Outcomes and Measures: Headache days, disability (assessed using the Pediatric Migraine Disability Scale [PedMIDAS]), and self-report of ongoing use of prescription preventive medication. Results: A total of 205 youth (mean [SD] age, 14.2 [2.3] years; 139 [68%] girls; mean [SD] history of migraine, 5.7 [3.1] years) participated in the survey. Retention of participants was 189 participants (92%) at month 6, 182 participants (88%) at month 12, 163 participants (80%) at month 18, 165 participants (80%) at month 24, and 155 participants (76%) at month 36. Over the course of the 3-year follow-up, participants consistently maintained meaningful reductions in headache days (mean [SD] headache days per 28 days: CHAMP baseline, 11.1 [6.0] days; CHAMP completion, 5.0 [5.7] days; 3-year follow-up, 6.1 [6.1] days) and disability (mean [SD] score: CHAMP baseline, 40.9 [26.4]; CHAMP completion, 17.9 [22.1]; 3-year follow-up, 12.3 [20.0]). At 3 years after completion of the CHAMP trial, headache days were approximately 1.5 per week (changed from about 3 per week at trial baseline) and disability had improved from the moderate range to the low mild range on the PedMIDAS. Longitudinal analyses showed that amitriptyline and topiramate did not explain intercept random effects for either mean rate of headache days per week (amitriptyline: estimate [SE], 0.07 [0.05]; P = .16; topiramate: estimate [SE], 0.04 [0.05]; P = .50) or headache disability PedMIDAS total score (amitriptyline: estimate [SE], 0.25 [0.38]; P = .52; topiramate: estimate [SE], -0.09 [0.39]; P = .82) changes over time. Of 153 participants who reported on prescription drug use at 3 years, only 1 participant (1%) reported using prevention medication, and most participants reported no medication use at most time points. Conclusions and Relevance: These findings suggest that children and adolescents with longer than 5 years history of migraine who participated in the CHAMP trial may sustain positive clinical outcomes over time, even after discontinuing preventive pill-based treatment. This survey study could inform use and discontinuation timing of pharmacological preventive therapies for migraine in youth ages 8 to 17 years. Research is needed to examine mechanisms of treatment improvement and maintenance for preventive therapies, as well as placebo, in the pediatric population.

Meeting physical activity and screen time among Colombian adolescents with or without sensory-related problems.

The aim of this study was to assess the extent to which adolescents with and without visual and hearing-related problems meet physical activity (PA) and recreational screen time (ST) recommendations in a representative Colombian sample. A total of 35,404 adolescents aged 13-17 years were included from the Encuesta Nacional de Salud Escolar (ENSE) (Colombia). Sociodemographic-related information, anthropometric variables, PA, ST, and both visual- and hearing-related problems were collected by self-administered questionnaires. The prevalence of adolescents meeting with PA, ST, and both recommendations was 14.8%, 53.4%, and 7.8%, respectively. Both sexes with visual- (males: OR=0.70, 95%CI 0.59-0.83; females: OR=0.73, 95%CI 0.61-0.88) and hearing-related problems (males, OR=0.75, 95%CI 0.61-0.93; females, OR=0.76, 95%CI 0.61-0.94) are less likely to meet combined recommendations. Sensory problems such as vision- and hearing-related problems could be considered key barriers to engagement in PA and facilitators of recreational ST in Colombian adolescents.

Heritable Connective Tissue Disorders in Childhood: Increased Fatigue, Pain, Disability and Decreased General Health.

Heritable Connective Tissue Disorders (HCTD) show an overlap in the physical features that can evolve in childhood. It is unclear to what extent children with HCTD experience burden of disease. This study aims to quantify fatigue, pain, disability and general health with standardized validated questionnaires. METHODS: This observational, multicenter study included 107 children, aged 4-18 years, with Marfan syndrome (MFS), 58%; Loeys-Dietz syndrome (LDS), 7%; Ehlers-Danlos syndromes (EDS), 8%; and hypermobile Ehlers-Danlos syndrome (hEDS), 27%. The assessments included PROMIS Fatigue Parent-Proxy and Pediatric self-report, pain and general health Visual-Analogue-Scales (VAS) and a Childhood Health Assessment Questionnaire (CHAQ). RESULTS: Compared to normative data, the total HCTD-group showed significantly higher parent-rated fatigue T-scores (M = 53 (SD = 12), p = 0.004, d = 0.3), pain VAS scores (M = 2.8 (SD = 3.1), p < 0.001, d = 1.27), general health VAS scores (M = 2.5 (SD = 1.8), p < 0.001, d = 2.04) and CHAQ disability index scores (M = 0.9 (SD = 0.7), p < 0.001, d = 1.23). HCTD-subgroups showed similar results. The most adverse sequels were reported in children with hEDS, whereas the least were reported in those with MFS. Disability showed significant relationships with fatigue (p < 0.001, rs = 0.68), pain (p < 0.001, rs = 0.64) and general health (p < 0.001, rs = 0.59). CONCLUSIONS: Compared to normative data, children and adolescents with HCTD reported increased fatigue, pain, disability and decreased general health, with most differences translating into very large-sized effects. This new knowledge calls for systematic monitoring with standardized validated questionnaires, physical assessments and tailored interventions in clinical care.

Caregiver's difficulty paying child's healthcare bills and bullying victimization of adolescents with physical disabilities.

Guided by the ecological systems perspective, the objective of the study was to examine whether caregivers' difficulty paying their child's health-care bills is associated with bullying victimization directly and indirectly through the mediating mechanisms of caregivers' frustration, adolescents' internalizing problems, and social difficulty focusing on adolescents with physical disabilities. The 2019 National Survey of Children's Health dataset, which collected data on adolescents' and caregivers' demographic characteristics and health and well-being, was used. The study sample consisted of 368 caregivers of adolescents, 12-17 years of age with physical disabilities. No direct association between caregivers' difficulty paying their child's health-care bills and bullying victimization was found. However, caregivers' frustration and adolescents' internalizing problems were shown to have an indirect association with bullying victimization, which was mediated by difficulty making friends. In addition, adolescents' difficulty making friends was positively associated with bullying victimization. Practitioners working with adolescents with physical disabilities are encouraged to foster collaborative processes across various ecological systems of the adolescent and family to address caregivers' frustration and promote positive social and emotional development of the adolescent with physical disabilities, which can decrease their risk of bullying victimization.

The quality of life of children with neurodevelopmental disorders and their parents during the Coronavirus disease 19 emergency in Japan.

This study aimed to reveal how the COVID-19 stay-at-home period has affected the quality of life (QOL) of children with neurodevelopmental disorders and their parents and to identify possible factors that enabled them to maintain their QOL. We enrolled 136 school-aged children (intellectual quotient ≥ 50) and their parents and administered QOL questionnaires to assess the maladaptive behavior of the children; depression, anxiety, and stress of the parents; and activities of their daily lives. The relationship between their QOL and clinical features was examined. The decrease in QOL of children and parents was associated with the mother's limited job flexibility. Decreased QOL was also associated with changes in the sleep rhythms of the children. Maladaptive behaviors in children were associated with parental stress. However, maintained QOL of some families who faced these same conditions of job stress and sleep disorders was associated with less parental stress, less parental depression and anxiety, and milder maladaptive behavior in children. Both mothers with limited job flexibility and changes in the sleep rhythm of children were associated with reduced QOL of children and their parents. Low parental stress was associated with decreased maladaptive behavior in children and with maintained QOL of the family.

Validação por expertos de uma proposta metodológica para promoção de atitudes positivas perante a deficiência em ambientes inclusivos / Validación por expertos de una propuesta metodológica para promover actitudes positivas hacia la discapacidad en entornos inclusivos / Validation by experts of a methodological proposal to promote positive attitudes towards disability in inclusive environments

A Actividade Física Adaptada à Pessoa com Deficiência (PcD) é reconhecida como um óptimo meio para a inclusão social desse grupo. No entanto, o grau de inclusão da PcD dependerá em grande parte das atitudes manifestadas pelos diferentes grupos populacionais, assumindo que uma atitude positiva influencia o comportamento da pessoa em relação a um grupo social específico. Em Moçambique, espera-se que técnicos desportivos capacitados em modalidades adaptadas à PcD, além de técnicos, sejam agentes que promovam a inclusão social. OBJECTIVO: o objectivo do presente estudo foi validar uma proposta metodológica que gere atitudes positivas em relação à deficiência, melhorando assim o perfil dos formados em cursos de agentes desportivos. MÉTODO: a proposta foi submetida a um processo de validação por especialistas, composto por um painel de 21 especialistas de quatro países (Espanha, Portugal, Brasil e Moçambique), seleccionados por meio de um questionário para determinação do coeficiente de competência. Para a análise dos resultados, foi utilizada a estatística inferencial (medidas de tendência central e dispersão) e o coeficiente de concordância "W de Kendall". RESULTADO: os especialistas avaliaram satisfatoriamente oito descritores, dentre eles, o contexto da proposta e sua aplicabilidade; o desenho, objectivos e estratégias da metodologia; os critérios de sucesso, o tempo estimado para sua implementação e os resultados esperados. CONCLUSÃO: foi validada por especialistas uma proposta metodológica com o objectivo de melhorar a atitude do formando em relação à deficiência

La Actividad Física Adaptada a la persona con discapacidad (PcD) es reconocida como un óptimo medio para la inclusión social de este grupo. Sin embardo, el grado de inclusión de las PcD dependerá en gran medida de las actitudes manifestadas por los diferentes grupos de población, asumiéndose que una actitud positiva influye en el comportamiento de la persona hacia un grupo social específico. En Mozambique, se espera que los técnicos deportivos formados en modalidades adaptadas a la PcD, sean además de técnicos, agentes dinamizadores de la inclusión social. OBJETIVO: el objetivo del presente estudio fue validar una propuesta metodológica que origine actitudes positivas hacia la discapacidad, mejorando así el perfil de salida de los formandos en cursos de técnicos deportivos. MÉTODO: la propuesta fue sometida a un proceso de validación por expertos, compuesto por un panel de 21 especialistas de cuatro países (España, Portugal, Brasil y Mozambique), seleccionados a través de un cuestionario para determinar el coeficiente de competencia. Para el análisis de los resultados se recurrió a la estadística inferencial (medidas de tendencia central y de dispersión) y el coeficiente de concordancia "W de Kendall". RESULTADO: los expertos evaluaron satisfactoriamente ocho descriptores, entre ellos, el contexto de la propuesta y su aplicabilidad; el diseño, objetivos y estrategias de la metodología; los criterios de éxito, el tiempo estimado para su implementación y los resultados esperados. CONCLUSIÓN: quedó validada por especialistas una propuesta metodológica con objetivo de mejorar la actitud del formando hacia la discapacidad

The Physical Activity Adapted to the Person with Disabilities (PwD) is recognized as an optimal path for the social inclusion of this group. However, the degree of inclusion of PwD will largely depend on the attitudes manifested by the different population groups, assuming that a positive attitude influences the behavior of the person towards a specific social group. In Mozambique, it is expected that the sports technicians trained in modalities adapted to the PwD, in addition to being technicians, will be agents that stimulate social inclusion. OBJECTIVE: the objective of the present study was to validate a methodological proposal that generates positive attitudes towards disability, thus improving the profile of the trainees leaving in courses for sports technicians. METHOD: the proposal was submitted to a validation process by experts, made up of a panel of 21 specialists from four countries (Spain, Portugal, Brazil and Mozambique), selected through a questionnaire to determine the coefficient of competence. For the analysis of the results, inferential statistics (measures of central tendency and dispersion) and the coefficient of agreement "Kendall's W" were used. RESULT: the experts satisfactorily evaluated eight descriptors, among them, the context of the proposal and its applicability; the design, objectives and strategies of the methodology; the success criteria, the estimated time for its implementation and the expected results. CONCLUSION: a methodological proposal with the aim of improving the attitude of the person being trained towards disability was validated by specialists

The roles of language use and vocabulary size in the emergence of word-combining in children with complex neurodevelopmental disabilities.

Parent report data on 82 preschool children with complex neurodevelopmental disabilities including Down syndrome, dyspraxia, autism, and global developmental delay suggests communicative language use must reach a threshold level before vocabulary size becomes the best predictor of word combining. Using the Language Use Inventory and the MacArthur-Bates CDI (with sign vocabulary option), statistical modelling using regression trees and random forests suggests that, despite high linear correlations between variables, (1) pragmatic ability, particularly children's emerging ability to talk about things, themselves and others is a significantly better predictor of the earliest word combining than vocabulary size; and (2) vocabulary size becomes a better predictor of later word combining, once this pragmatic base has been established.

Ethical Considerations of Social Media to Recruit Caregivers of Children With Cancer.

BACKGROUND: Social media platforms are useful for recruiting hard-to-reach populations, such as caregivers of children with cancer, for research. However, there are unique ethical considerations in using social media. OBJECTIVES: The aim of the study was to describe the methods used to recruit hard-to-reach caregivers (parents of children with cancer) for research and related ethical considerations. METHODS: We used The Belmont Report tenets (respect for persons, beneficence, and justice) as a guiding framework to identify issues relevant to social media recruitment of hard-to-reach populations and to describe how we addressed these issues in our study. RESULTS: We engaged leaders of two online communities that offer peer support for caregivers of children with cancer to help with recruitment to our study on financial effect of pediatric cancer. We identified issues in using social media for recruiting hard-to-reach populations in alignment with The Belmont Report, including risk for subject selection bias, privacy rights, protecting identity of participants, data security issues, and access to research. We addressed issues by deliberate study design decisions and engagement with online community advocates. DISCUSSION: Using social media to recruit hard-to-reach populations may be a successful way to engage them in research. Although researchers may remain compliant with the institutional review board of their facilities and are faithful to the tenets of The Belmont Report, unanticipated ethical issues may arise directly or indirectly as a result of using social media. This article identifies these issues and provides suggestions for dealing with them.