Pain care for children with cognitive impairment: A parent-nurse partnership.

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.

Ethnographic perspectives of mothers and professionals on including children with disabilities in oral health in the Kingdom of Saudi Arabia.

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.

The effect of a training program on family stress and life satisfaction: A randomized controlled study of mothers of children with disabilities.

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.

Physical Activity and Cognitive Functioning.

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.

Body mass index, oral health status and OHRQoL among special health care needs children and parenting stress: a case-control study in Southern Saudi Arabia.

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.

[Use of support and relief services for parents of children in need of care: Results of the FamBer observational study]. / Inanspruchnahme von Unterstützungs- und Entlastungsdiensten für Eltern pflegebedürftiger Kinder.

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.

Healthy Parent Carers: Acceptability and practicability of online delivery and learning through implementation by delivery partner organisations.

BACKGROUND: Parent carers of disabled children are at increased risk of physical and mental health problems. The Healthy Parent Carers (HPC) programme is a manualised peer-led group-based programme that aims to promote parent carer health and wellbeing. Previously, the programme had been delivered in person, with recruitment and delivery managed in a research context. This study explored implementation by two delivery partner organisations in the United Kingdom. Facilitator Training and Delivery Manuals were modified for online delivery using Zoom due to COVID-19. METHODS: The study methodology utilised the Replicating Effective Programs framework. A series of stakeholder workshops informed the development of the Implementation Logic Model and an Implementation Package. After delivering the programme, delivery partner organisations and facilitators participated in a workshop to discuss experiences of implementing the programme. A wider group of stakeholders, including commissioners, Parent Carer Forums and charity organisations representatives and researchers subsequently met to consider the sustainability and potential barriers to delivering the programme outside the research context. RESULTS: This study explored implementation by two delivery partner organisations in the United Kingdom that were able to recruit facilitators, who we trained, and they recruited participants and delivered the programme to parent carers in different localities using Zoom. The co-created Implementation Logic Model and Implementation Package were subsequently refined to enable the further roll-out of the programme with other delivery partner organisations. CONCLUSIONS: This study provides insight and understanding of how the HPC programme can be implemented sustainably outside of the research context. Further research will evaluate the effectiveness of the programme and refine the implementation processes. PATIENT AND PUBLIC CONTRIBUTION: Parent carers, delivery partner organisation staff and service commissioners were consulted on the design, delivery and reporting of the research.

Accommodation and disability-specific differences in nutritional status of children with disabilities in Kathmandu, Nepal: A cross-sectional study.

BACKGROUND: Worldwide, more than 150 million children < 18 years live with disabilities. These children are more vulnerable to malnutrition regardless of institutional care that they receive, such as daycare or residential care. In Nepal, little is known about the status of malnutrition and factors associated with malnutrition among children with disabilities. This study was conducted to investigate the factors associated with malnutrition based on the types of disability and accommodation. METHODS: This institution-based, cross-sectional study was conducted in 22 institutions in the Kathmandu Valley, Nepal. From these institutions, parents/guardians of all children with disabilities were recruited who were present there on the day of data collection. They were interviewed using a structured questionnaire. The questionnaire included questions on demographic characteristics, disability type and severity, accommodation place, feeding practices, and dietary patterns. The outcome variables, stunting, underweight, and obesity were measured using height-for-age, weight-for-age, and body mass index-for-age, respectively. A generalized linear model was used to investigate the factors associated with stunting and underweight, and multinomial logistic regression was used to identify the factors associated with overweight and obesity. RESULTS: Among the 345 children with disabilities, 45% were stunted, 33% were underweight, 19% were thin, and 12% were overweight. Children with physical disabilities (relative risk ratio = 1.88, 95% confidence interval [CI] = 1.26-2.81) were more likely to be stunted than those with sensory disabilities. Children with autism (adjusted odds ratio [aOR] = 5.56, 95% CI: 1.23-25.23) and intellectual disabilities (aOR = 5.84, 95% CI: 1.59-21.51) were more likely to be overweight and obese than those with sensory disabilities. No evidence was found regarding an association between accommodation type and malnutrition. CONCLUSION: Children with disabilities are vulnerable to malnutrition in several ways. Different types of disabilities are associated with different forms of malnutrition. Considering the types of disabilities, tailor-made approaches should be adopted to improve malnutrition status.

Challenges when going on excursions with children with medical complexity in Japan.

BACKGROUND: With advances in medical technology, the number of children with medical complexity (CMC) has increased. Excursions with such children encourage their social participation and have been shown to have a positive impact on their caregivers. However, the first-hand experience of the excursions has not yet been evaluated regarding the difficulties faced by CMC and their caregivers during preparation, transportation, and in the local area. METHODS: Semi-structured interviews were conducted with eight informal and eight formal caregivers of CMC who attended an excursion to Tokyo Disney Land (TDL) via video conference. We investigated challenges that they had experienced through the excursion, performing inductive thematic analysis. RESULTS: Three themes were identified: the preparation stage (Theme 1), problems encountered while traveling to the theme park (Theme 2), and problems at the theme park (Theme 3). In the preparation stage, three subthemes, i.e. preparation for the trip, cooperation with related parties, and researching about the theme park and asking for help, are reported. Theme 2 includes four subthemes: activities of daily living, respiratory care, luggage, and weather changes. Theme 3 has three subthemes: activities of daily living, physical condition management, and issues for the theme parks. CONCLUSIONS: We found that securing the power supply, location, and time for daily procedures are challenges in realizing excursions for CMC, but with sufficient preparation, it is possible in Japan without major difficulty.

Usefulness of Telemedicine for Disabled Children Receiving Feeding Therapy.

We performed a retrospective cohort study using medical records of 374 pediatric patients who visited a university dental clinic specializing in dysphagia rehabilitation in Japan between 2019 and 2020 to clarify the usefulness of telemedicine among disabled children receiving feeding therapy. The primary outcome was the feeding developmental stage confirmed at the final evaluation. Propensity score matching was performed between individuals in two treatment groups (in-person and telemedicine) before the final analysis using patients' age, sex, primary disease, gross motor function, and feeding developmental stage as covariates. A total of 36 patients were enrolled in each of the in-person and telemedicine groups. The initial evaluation for the propensity score matched population using the χ2 test showed no significant difference between the two groups in any parameter. The feeding developmental stage evaluated at the final evaluation using the Wilcoxon signed-rank test significantly improved compared with the stage at the initial evaluation in both groups (in-parson group, p = 0.007; telemedicine group, p = 0.013). The difference in level achieved at the final evaluation revealed that the most common level was "unchanged," followed by "improvement by one level" in both groups, indicating that there was no significant difference in the efficacy of feeding therapy between the two groups (p = 0.314). Our results show that telemedicine can achieve the same therapeutic outcomes as in-person therapy to improve feeding function in children with disabilities when receiving feeding therapy.

Musculoskeletal pain and quality of life in mothers of children with microcephaly, due to congenital Zika virus syndrome.

PURPOSE: The purpose of this study is to observe the prevalence and intensity of musculoskeletal pain and the quality of life in mothers of children with microcephaly and also to compare the scores of the quality of life domains between mothers who had or did not have musculoskeletal pain. METHODS: This is a cross-sectional study that evaluated mothers of children with a clinical diagnosis of microcephaly, due to congenital Zika virus syndrome, in the state of Pernambuco, northeast region, Brazil. To assess musculoskeletal pain, the Nordic Questionnaire of Musculoskeletal Symptoms was used, pain intensity was assessed by the Visual Analogue Scale and quality of life by the SF-36 Questionnaire. RESULTS: Of the 63 mothers evaluated, 59 (93.7%) reported currently experiencing musculoskeletal pain. The lumbar spine was the body region with the highest prevalence of pain (77.8%), followed by the thoracic spine (57.1%) and cervical spine (50.8%). Pain intensity was higher in the lumbar spine (6.00 ± 0.47), thoracic spine (4.44 ± 0.52) and shoulders (3.81 ± 0.51). The domains that presented the lowest scores in the quality of life assessment were general health status (49.0 ± 3.19), emotional aspects (49.7 ± 5.88) and pain (49.7 ± 2.50). Mothers who had musculoskeletal pain had lower scores in all domains of quality of life assessment compared to mothers who did not have pain, demonstrating significant differences for functional capacity (P = 0.035), physical aspects (P = 0.047) and pain (P = 0.002). CONCLUSION: A high prevalence of musculoskeletal pain was observed in mothers of children with microcephaly, with a higher prevalence and intensity in the lumbar spine. The domains related to physical and emotional health presented the worst scores in the quality of life of the evaluated mothers and the presence of musculoskeletal pain reduced the quality of life of the mothers of children with microcephaly in this study.

How much do children with disabilities participate in Clinical Trials? A Scoping review.

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.

[Passporting of parents of disabled children as an analytical resource of social policy].

The article presents the results of a study of the main social and household characteristics of families with disabled children, conducted in the territory of the Belgorod region (targeted survey; n = 990). The research made it possible to answer questions about children's health problems, their living conditions, the economic status of the family, the work of parents, the social environment and other characteristics of families. The article examines the passporting method of target problem (socially vulnerable) groups as an effective way of obtaining system information, a social picture of the situation, conditions, and problems of such families. The results of the research made it possible to determine the risks associated with the condition of children who require constant help and support, the category of families with unsatisfactory living conditions, the need for advanced training and retraining among parents. An important result of the study was the income map of families with disabled children, which identified the problematic characteristics of the socially vulnerable group and helped determine the directions of primary assistance and support. The scientific result of the article is the conclusion about the need for systematic control of all problematic components of the life of families raising disabled children, about the need for monitoring such information for the organization of targeted assistance and changes in social policy to meet the actual needs of such families.

Concurrent Validity of Different Sensor-Based Measures: Activity Counts Do Not Reflect Functional Hand Use in Children and Adolescents With Upper Limb Impairments.

OBJECTIVE: To investigate the concurrent validity of 4 different outcome measures to determine daily functional hand use with wrist-worn inertial sensors in children with upper limb impairments. We hypothesized that the commonly used activity counts are biased by walking and wheeling activities, while measures that exclude arm movements during these periods with activity detection algorithms or by limiting the analysis to a range of functional forearm elevation would lead to more valid estimates of daily hand use. DESIGN: Concurrent validity study with video-based observations of functional hand use serving as the criterion measure. SETTING: The participants were videotaped while performing an activity circuit at the rehabilitation center and wearing inertial sensors. PARTICIPANTS: A convenience sample of 30 school-aged children and adolescents with upper limb impairments. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Spearman rank correlation coefficients ρ between the criterion measure and 4 sensor-based measures: activity counts, combining activity counts with activity detection algorithms (arm activity counts), limiting activity counts to a functional range of forearm elevation (functional activity counts), and a threshold-based approach limited to the same range of forearm elevation (gross arm movements). RESULTS: Activity counts (ρ=0.43) and gross arm movements (ρ=0.57) did not reveal valid estimates of daily hand use. In contrast, arm and functional activity counts correlated significantly stronger with the criterion measure and revealed valid correlation coefficients of 0.78 and 0.71, respectively. CONCLUSIONS: Activity counts should not be used to measure daily hand use because they are biased by walking and wheeling activities. Arm and functional activity counts provide better and valid alternatives. The selection of these 2 approaches depends on the availability and accuracy of activity detection algorithms and on the users' willingness to wear additional sensors in daily life.

Parent Experience and Cost Savings Associated With a Novel Tele-physiatry Program for Children Living in Rural and Underserved Communities.

OBJECTIVE: The aim of this study was to investigate parent and therapist experience and cost savings from the payer perspective associated with a novel tele-physiatry program for children living in rural and underserved communities. DESIGN: We designed a noninferiority, cluster-randomized crossover study at 4 school-based clinics to evaluate parent experience and perceived quality of care between a telemedicine-based approach in which the physiatrist conducts the visit remotely with an in-person therapist and a traditional in-person physiatrist clinic. SETTING: Four school-based clinics in Northern California. PARTICIPANTS: A total of 268 encounters (124 telemedicine and 144 in-person) were completed by 200 unique patients (N=200). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Parent and therapist experience scores. RESULTS: For parents and therapists, experience and perceived quality of care were high with no significant differences between telemedicine and in-person encounters. For parents whose children received a telemedicine encounter, 40 (54.8%) reported no preference for their child's subsequent encounter, 21 (28.8%) preferred a physiatrist telemedicine visit, and 12 (16.4%) preferred a physiatrist in-person visit. From the payer perspective, costs were $100 higher for in-person clinics owing to physician mileage reimbursement. CONCLUSIONS: We found that school-based tele-physiatry for children with special health care needs is not inferior to in-person encounters with regard to parent and provider experience and perceived quality of care. Tele-physiatry was also associated with an average cost savings of $100 per clinic to the payer.

Healthcare for children depend on medical technology and parental quality of life in Japan.

BACKGROUND: The aim of this study was to explore and clarify the healthcare service utilization of children dependent on medical technology (CMT), and the parental health-related quality of life (HRQOL). METHODS: Participants recruited the primary caregivers of children with medical complexity (CMC), identified using an existing registry of raising CMC aged 1-20 years and receiving reimbursements for their home-based medical care at a children's hospital. We used an exploratory cross-sectional study design and sent questionnaires to 286 parents. To clarify the characteristics of CMT and families, we compared two groups on demographics of children's and families', service utilization and parental HRQOL. The participants were categorized into the CMT and children with chronic conditions (CCC) groups, based on whether they required ventilator, suctioning, or tube feeding; had tracheostomy, or gastrostomy; or had central line or clean intermittent catheterization. RESULTS: Of the 95 children selected, 31 were CMT. The participants' characteristics, service utilization, and the parents' HRQOL were compared between the two groups. Compared to CCC, CMT were more likely to be younger, more unstable, more demanding of their caregiver's time, caused greater reductions in their caregiver's sleep time, caused heavier caregiver burden, had higher rates of unexpected hospital admissions and emergency visits, required greater care coordination, and exhibited a higher health service utilization. Parents of CMT were found to have poor mental and physical health in HRQOL. CONCLUSIONS: Improving the outcomes of parents caring for CMT requires high quality healthcare services, especially respite care for the parents, and care coordination.

Prevalence of developmental delay among children: A national study based on administrative database of the single-payer National Health Insurance System in Taiwan.

BACKGROUND: Developmental delay (DD) indicates a failure to meet the developmental milestones of most children of the same age. Studies based solely on the ICD coding manual may underestimate the prevalence of DD. Real-world use of rehabilitation data may be useful in the identification of more DD children previously undiagnosed with DD. AIM: The aim of this study is to estimate the prevalence of DD among children aged 0-6 by age and sex in Taiwan based on modified ICD codes. METHODS: A list of ICD codes specific to DD (including delays and disabilities requiring early intervention) was generated from the existing ICD codebook and modified based on National Health Insurance (NHI) claims data pertaining to developmental rehabilitation of children aged 0-6. The validity of the codes was subsequently assessed by DD experts in various fields using the consensus development technique. The resulting list was used to estimate the prevalence of DD among children in Taiwan from 2000 to 2015 based on analysis of longitudinal NHI data. RESULT: Between 2000 and 2015, the prevalence of DD among children aged 0 to 6 years increased from 2.0% to 5.7%, and the sex ratio was 181-197 males per 100 females. The prevalence estimate obtained in this study (5.6%) was 229% higher than existing government statistics (1.6%) published in 2014. CONCLUSIONS: The codes developed using claims data in this study can be used to estimate the prevalence of DD among children and evaluate the effectiveness of intervention programmes. Consistent increases in the prevalence of DD indicate that efforts to promote early intervention have been effective. Nonetheless, the low prevalence rate among 0-2 years children with developmental delay and low prevalence rate of female CWDD means that the policy should notice the lack of access to healthcare services for infants and female children and produce a more equitable or fair distribution of healthcare resources.

Oral health experiences and perceptions of children with disabilities in the Kingdom of Saudi Arabia.

BACKGROUND: The clinical focus on oral health means there is a scarcity of evidence from the perspectives of children with disabilities because of the continuing exclusion of their views from oral health research. This study takes a rights-based approach, aiming to give disabled children a voice by exploring their oral health perspectives and experiences. In order to do this, innovative and inclusive methods are needed. AIM: The aim was to include the voices of children with disabilities by representing their perspectives and experiences of oral health. DESIGN: An ethnographic study employed a purposive sample of 10 children between the ages of 9 and 15 years with a range of intellectual disabilities and physical impairments attending special centres in Riyadh, Saudi Arabia. All children in the sample were female. Pluralistic methods enabled the inclusion of children in the research. Thematic analysis was used to analyse the data. RESULTS: The study describes different inclusive methods to enable children's voices on oral health. Main themes were children's knowledge, and their oral health practices and experiences of visiting dental clinics. Children also described the physical barriers they experienced and their positive and negative feelings about oral health. CONCLUSIONS: The study highlights that including children with disabilities in oral health research is possible, but that researchers need to be creative and be able to work in tandem with children. One goal for dental research is to include all children as active participants, working with them as collaborators. This would help transform services and reduce children's oral health inequalities.

[Sleep quality and mental well-being of mothers caring for children with disabilities and requiring oxygen therapy and night care at home].

Objectives　This study aimed to 1) determine what kind of care for children with disabilities is related to the mothers' sleep and mental well-being and 2) objectively measure the sleep state of mothers responsible for children with disabilities.Methods　A self-administered questionnaire was distributed to 180 mothers of children enrolled in the Special Needs Education School in prefecture A. Amongst these, nine who provided consent underwent objective sleep measurements using actigraphy. The questionnaire investigated the lifestyle and the type of care needed for children with disabilities and their influence on the mothers. Subjective sleep quality (Pittsburgh Sleep Quality Index) and mental well-being status (General Health Questionnaire) of the mothers were also evaluated. Logistic regression analysis was performed to analyze the background factors affecting sleep quality and mental health.Results　Of the 180 participants, 84 (46.7%) provided valid responses. Fifty-two (64.2%) and 34 (42.0%) individuals subjectively reported poor sleep quality and poor mental well-being, respectively. Mothers having responsibilities of oxygen therapy and night care reported significantly poor sleep quality and mental well-being. Moreover, objective sleep measurements showed that the changes in the child's physical condition, such as ventilator management, epileptic seizures, and fever, resulted in prolonged waking times and affected the sleep efficiency of the mother.Conclusion　Responsibilities toward providing oxygen therapy and night care for their children with disabilities influenced the sleep quality and mental well-being of the mothers. Thus, it is important to provide support to mothers caring such disabled children.

[The medical social characteristic of disabled children residing in nursing homes of the Russian Federation].

The purpose of the study is to identify and systematize urgent problems and proposals for implementing innovations in medical and social care of disabled children in nursing homes. The analysis of official data and results of epidemiological study concerning disabled children aged 0-17 years resigning in nursing homes permitted to identify dynamics of changes in age structure of observed contingent, causes of disability and accessibility and quality of medical care and psychological pedagogical assistance. It was established that total number of disabled children living in nursing homes and their part among all disabled children is stable. The most common pathology and cause of disability are mental and behavioral disorders, diseases of nervous system, congenital anomalies, deformities and chromosomal abnormalities, diseases of eye and its adnexa. The insufficient accessibility and low quality of various types of medical care (preventive examination, specialized, hospital, rehabilitation and palliative care) is established. At organizing education of children, difficulties occurred due to lacking of special conditions and technical means, availability and qualification of specialists of psychological and pedagogical profile. In most cases, inmates reside in buildings with high technical wear and impossibility of complex implementation of state programs requirements. The article presents set of proposals, including consolidation of subordination of medical support to regional medical centers, introduction of modern education technologies for disabled children, improvement of competence of psychological and pedagogical personnel, external audit of technical conditions and facilities of nursing homes, widespread application of potential of non-governmental organizations.