BACKGROUND AND OBJECTIVE

Community-based rehabilitation (CBR) represents a multifaceted social intervention designed to tackle issues related to access, equity, and service quality. Within the framework of CBR, participation stands as a pivotal principle, albeit one that frequently goes unnoticed, particularly concerning children with disabilities. Consequently, this realist synthesis embarks on an exploration of the present landscape, participation mechanisms, and resulting outcomes within CBR initiatives tailored for children with disabilities in low and low-middle-income countries.

The realist approach is utilized to explain the causal mechanisms and explore the context, mechanism, and outcome of participation in CBR programs. A systematic search was conducted across ten databases up to April 2021. Studies were included if they involved children with disabilities aged 17 years and below, were implemented in World Bank-classified low-income or low-middle-income countries, discussed implementation mechanisms and community participation, and described outcomes. No language restrictions or publication type limitations were applied. The search process employed double screening of title, abstract, and full-text levels, followed by a snowballing technique. Quality assessment followed the RAMESES standards for realist reviews. Data extraction and analysis yielded context-mechanism-outcome configurations.

Thirteen articles were included in the synthesis, from which three context-mechanism-outcome configurations were identified: (1) family-facilitated intervention through training in the immediate environment of children with disabilities leads to knowledge translation of caregivers, (2) inaccessible healthcare services require establishing a referral system and augmenting human resource to ensure the system’s capacity to accommodate the magnified need, and (3) established collaboration of researcher, professionals, and community with stakeholder involvement in the CBR management leads to program adoption and documented effectiveness. Both training and establishing referral systems as implementation mechanisms pose sustainability challenges due to dependency on funding. Overall, participation as a form of agency is more often an implied concept. Training is a common mechanism of implementation, where women play a critical role as proxies of children with disabilities, being their caregivers and advocates. Positive and negative outcomes focus on the condition of children with disabilities and the trainees’ knowledge and awareness.

A critical analysis of children's and community's participation in the context, mechanism, and outcome unravels the non-participation of children with disabilities and tokenism of the community stakeholders in the CBR programs. Maximizing the contribution of children with disabilities and community stakeholders is called for, aligned with the ladder of participation, toward their democratic participation. Study limitations include the paucity of published CBR programs reporting participation mechanisms in low and low-middle-income countries and the exclusion of studies from economically disadvantaged communities in high-income countries.

BACKGROUND

During the COVID-19 pandemic, social isolation and quarantine measures set to control the spread of the infection paved for the increased utilization of virtual methods of consultation and follow-up. Telerehabilitation allows access to rehabilitation services despite distance and makes possible the continuation of rehabilitation services despite the lack of face-to-face interaction. This is difficult for pediatric patients who are dependent on their caregivers for understanding and making decisions regarding their health. Loss of continuity of rehabilitation services led to poorer outcomes in children with disabilities. Although advantageous for them, pediatric patients may not benefit from telerehabilitation if caregivers have negative perceptions of the process and are unwilling to utilize the service.

This study determined caregivers’ perceptions and willingness to participate in telerehabilitation as a method of outpatient follow-up for pediatric patients admitted to a COVID-referral center in a developing country.

The study utilized a descriptive cross-sectional design. Respondents were adults (≥19 years old) caring for pediatric patients admitted at non-COVID wards of the Philippine General Hospital and who were referred for rehabilitation services. A survey tool adapted from a previous study on willingness to utilize telemedicine among caregivers of pediatric patients was translated into the Filipino language and used in the study. A dataset from Excel was imported in STATA 16 (StataCorp, Texas, USA) and was exhaustively checked for completeness, accuracy, and consistency before analysis. The association between patient characteristics and willingness to utilize telerehabilitation for any app was determined using Pearson’s chi-squared test or Fisher’s exact test, as appropriate. The latter was used when more than 20% of the cells had an expected value of less than or equal to five. A P value of less than 0.05 was considered significant for all tests.

Of 123 respondents, 92 (75%) reported willingness to utilize telerehabilitation for outpatient consultation and therapy using video calls or a customized telerehabilitation app when available. Among 31 (25%) respondents who were not willing or unsure of participation, the main reasons identified were preference for face-to-face, lack of financial resources/load, poor connectivity, and doubt about the effectiveness of telerehabilitation.Patients with younger age (Fisher’s exact test, P=0.023), low usage of video call service (Fisher’s exact test, P=0.020), and lack of available devices (Fisher’s exact test, P=0.015) significantly reduced willingness to utilize telerehabilitation. Caregiver age, sex, educational attainment, estimated monthly income, number of devices used, speed of internet connectivity, and technological behaviors did not show statistical significance in association with willingness to participate in telerehabilitation.Most caregivers recognized the usefulness of a service allowing transmission of health data to and from the hospital, consultation with a doctor in case of an emergency, sending of reminders for medical visits and therapy, and provision of a list of home exercises and nutritional recommendations. Telerehabilitation was perceived advantageous, but concerns regarding privacy, trust, lack of human contact, and technological difficulty were also present.

With high levels of willingness among caregivers, telerehabilitation is a viable method of providing rehabilitation services for the continuation of management after inpatient admission among pediatric patients. Limitations in its utilization include technological issues including the lack of devices, low level of service use, and slow internet connectivity. Although well perceived as advantageous, there are concerns regarding loss of human contact, difficulty in using technological devices, and trust and privacy issues that may affect utilization.

BACKGROUND AND OBJECTIVE

The Gross Motor Function Classification System – Expanded and Revised (GMFCS-E&R) is a valid tool commonly used by physicians, therapists, and potentially also by other healthcare workers even at the primary care and grassroots levels to facilitate immediate screening, appropriate referral, and management of children with disability needing mobility devices. As Filipinos comprise one of the largest diaspora populations, this study aimed to provide a Filipino version of the GMFCS-E&R and determine its internal consistency and inter- and intra-rater reliability.

A multidisciplinary group of rehabilitation professionals at Philippine General Hospital worked with linguists to translate the original English GMFCS-E&R to Filipino/Tagalog, the Philippines’ official language. Several steps were done: authorization from the original tool developers (CanChild™); forward and backward translations; semantic analysis; content analysis; pilot testing; and submission of final version to CanChild™. Internal consistency and inter- and intra-rater reliability were determined.

The Filipino GMFCS-E&R translation was formulated and underwent several modifications. The final version yielded high internal consistency (Cronbach’s alpha: 0.96) and inter- and intra-rater reliability (interclass correlation coefficients: 0.895 and 0.928, respectively).

The Filipino GMFCS-E&R is a reliable tool for use among pediatric Filipino patients for communication, clinical decision-making, registries, and research.

Background. Children comprise a significant proportion of persons with disabilities (PWDs) in the Philippines, and represent a major public health challenge. One under-explored topic is the "lived experiences" of their parents and guardians as well as the roles they play in caring for their children. This qualitative study responds to this research gap by eliciting and foregrounding their experiences and narratives.

Methods. Six focus group discussions (FGDs) were conducted among parents of children with disabilities (CWDs) in Davao City and Tagum City. These were complemented by 12 key informant interviews among healthcare providers in both cities.

Results. For many parents, coming to terms with a disability is a difficult and lengthy process, but one that ends with a measure of relief and eventual adaptation. Living with disability, meanwhile, is fraught with medical, financial, educational, and social challenges. A positive religious outlook allows them to make sense of disability, helping them to overcome these challenges. Support groups and the health care system are likewise crucial factors towards family resilience.

Conclusion. Our findings show that the experience of disability is shared among family members, particularly, the parents of CWDs; thus, underscoring the need for a family-centered approach in policies, clinical care, and communications efforts involving children with disability in the Philippines.

From September 2017 to February 2018, 650 disabled children and adolescents aged 6-to 17-year-old in Beijing were matched 1∶1 to those in normal physical condition with same age, gender and place of residence. All children and adolescents were investigated for self-injury status in the last year to understand the difference of self-injury incidence between groups. Multivariate unconditional logistic regression model was applied for exploring relevant factors of self-injury of children and adolescents. This study found that the disability, insufficient sleep, difficulty falling asleep, and sleeping late were associated with self-injury of children and adolescents.
Adolescent ; Beijing ; epidemiology ; Child ; Cross-Sectional Studies ; Disabled Children ; statistics & numerical data ; Humans ; Logistic Models ; Self-Injurious Behavior ; epidemiology ; Sleep

PURPOSE: Pediatric palliative care (PPC) is emphasized as standard care for children with life-limiting conditions to improve the quality of life. In Korea, a government-funded pilot program was launched only in July 2018. Given that, this study examined various PPC delivery models in other countries to refine the PPC model in Korea. METHODS: Target countries were selected based on the level of PPC provided there: the United Kingdom, the United States, Japan, and Singapore. Relevant literature, websites, and consultations from specialists were analyzed by the integrative review method. Literature search was conducted in PubMed, Google, and Google Scholar, focusing publications since 1990, and on-site visits were conducted to ensure reliability. Analysis was performed on each country's process to develop its PPC scheme, policy, funding model, target population, delivery system, and quality assurance. RESULTS: In the United Kingdom, community-based free-standing facilities work closely with primary care and exchange advice and referrals with specialized PPC consult teams of children's hospitals. In the United States, hospital-based specialized PPC consult teams set up networks with hospice agencies and home healthcare agencies and provide PPC by designating care coordinators. In Japan, palliative care is provided through several services such as palliative care for cancer patients, home care for technology-dependent patients, other support services for children with disabilities and/or chronic conditions. In Singapore, a home-based PPC association plays a pivotal role in providing PPC by taking advantage of geographic accessibility and cooperating with tertiary hospitals. CONCLUSION: It is warranted to identify unmet needs and establish an appropriate PPD model to provide need-based individualized care and optimize PPC in South Korea.
Adolescent ; Child ; Delivery of Health Care ; Disabled Children ; Financial Management ; Great Britain ; Health Services Needs and Demand ; Home Care Services ; Hospice Care ; Hospices ; Humans ; Japan ; Korea ; Methods ; Palliative Care ; Pediatrics ; Primary Health Care ; Quality of Life ; Referral and Consultation ; Singapore ; Specialization ; Tertiary Care Centers ; United States

OBJECTIVES: The aims of this study were to identify the associations of levels of severity of neurodevelopmental disorders and disabilities (NDD/D) in children with their household socioeconomic status (SES) and their frequency of visits to a healthcare provider, and to examine how the severity of disability varied with these determinants among NDD/D subgroups, in order to inform possible social policy changes and to improve access to the healthcare system. METHODS: Data from the 2006 Participation and Activity Limitation Survey on children aged 5-14 years, collected by Statistics Canada, were analyzed (n=7,072 and weighted n=340,340). Children with NDD/D constituted those with impairments in motor, speech, neurosensory, and psychological functioning, as well as those who had issues with learning/cognition and social interactions. The weighted sample size for this group was n=111,630 (total sample size for children with limitations: n=174,810). We used logistic regression to assess the associations of household SES and frequency of visits to a healthcare provider with disability level. We included NDD/D subgroups as interaction terms in the model. Multiple correspondence analysis (MCA) was conducted to develop a profile of disability level. RESULTS: After-tax low income, family assistance, out-of-pocket expenses, needing but not receiving health services from a social worker, condition of the dwelling, and residential location were associated with the severity of NDD/D. Using MCA, 2 disability profiles could be identified based on access to healthcare, household income status, and condition of the dwelling. CONCLUSIONS: More social interventions are needed to reduce difficulties in accessing healthcare and to diminish the socially determined health inequalities faced by children with NDD/D.
Canada ; Child* ; Delivery of Health Care* ; Disabled Children ; Family Characteristics ; Health Expenditures ; Health Personnel ; Health Services ; Humans ; Interpersonal Relations ; Logistic Models ; Neurodevelopmental Disorders* ; Public Policy ; Sample Size ; Social Class ; Social Work ; Social Workers ; Socioeconomic Factors

OBJECTIVE: To investigate the disability registration state of children with cerebral palsy (CP) in Korea. METHODS: Based on the National Health Information Database, the disability registration state was examined for brain lesion disability and other possible complicated disabilities accompanying brain disorder in children diagnosed with CP aged up to 5 years old who were born between 2002 and 2008. RESULTS: Of children diagnosed with CP, 73.1% were registered as having brain lesion disability for the first time before they turned 2 years old. The younger the children, the more likely they will have 1st and 2nd degree disability. However, when the age of children is increased, such likelihood is decreased. The percentage of children registered as having overlapping disabilities was 7%–20%. CONCLUSION: It is important to establish a more accurate standard to rate disability and provide national support systems for children with CP with various severities and multiple disabilities. By reorganizing the current disability registration system for pediatric brain lesions, the system could serve as a classification standard to provide medical and social welfare services.
Brain ; Brain Diseases ; Cerebral Palsy* ; Child* ; Classification ; Disabled Children ; Humans ; Korea* ; Registries ; Social Welfare

OBJECTIVES: The aims of this study were to identify the associations of levels of severity of neurodevelopmental disorders and disabilities (NDD/D) in children with their household socioeconomic status (SES) and their frequency of visits to a healthcare provider, and to examine how the severity of disability varied with these determinants among NDD/D subgroups, in order to inform possible social policy changes and to improve access to the healthcare system.METHODS: Data from the 2006 Participation and Activity Limitation Survey on children aged 5-14 years, collected by Statistics Canada, were analyzed (n=7,072 and weighted n=340,340). Children with NDD/D constituted those with impairments in motor, speech, neurosensory, and psychological functioning, as well as those who had issues with learning/cognition and social interactions. The weighted sample size for this group was n=111,630 (total sample size for children with limitations: n=174,810). We used logistic regression to assess the associations of household SES and frequency of visits to a healthcare provider with disability level. We included NDD/D subgroups as interaction terms in the model. Multiple correspondence analysis (MCA) was conducted to develop a profile of disability level.RESULTS: After-tax low income, family assistance, out-of-pocket expenses, needing but not receiving health services from a social worker, condition of the dwelling, and residential location were associated with the severity of NDD/D. Using MCA, 2 disability profiles could be identified based on access to healthcare, household income status, and condition of the dwelling.CONCLUSIONS: More social interventions are needed to reduce difficulties in accessing healthcare and to diminish the socially determined health inequalities faced by children with NDD/D.
Canada ; Child ; Delivery of Health Care ; Disabled Children ; Family Characteristics ; Health Expenditures ; Health Personnel ; Health Services ; Humans ; Interpersonal Relations ; Logistic Models ; Neurodevelopmental Disorders ; Public Policy ; Sample Size ; Social Class ; Social Work ; Social Workers ; Socioeconomic Factors

OBJECTIVE: To retrospectively figure out the oral health status, treatment and follow-ups after dental treatment under general anesthesia (DGA) of disabled children or adolescents. METHODS: Clinical data of disabled children or adolescents and normal children as control received DGA in the Department of Pediatric Dentistry, Peking University School and Hospital of Stomatology from August 2008 to September 2015 were recorded, including: gender, birth date, treatment date, disability type, oral health status before treatment, treatment content and follow-ups (in 1 year). Differences among ages and disabilities were analyzed statistically. RESULTS: Sixty-two disabled patients and fifty-seven controls were recruited, mean aged (9.38±5.22) years and (3.00±1.41) years. Most patients had 10 to 15 problem teeth with which the mean number of the disabled children and adolescents was (11.79±4.98) while that of the normal controls was (12.40±4.11). Caries, pulpitis, periapical periodontitis, dental trauma and developmental tooth anomalies of the disabled patients accounted for 67.56%, 13.54%, 15.15%, 1.07%, and 2.68%, respectively and the DMFT/dmft index was 11.55±5.56 while in the control group those were at 65.35%,19.09%,14.14%,0,1.41% and 12.23±4.42. The DMFT/dmft index of the disabled patients in the group 6-12 years (8.35±4.69) was significantly less than that of the other three groups (P<0.01) while no differences were found in disabilities (P=0.239). Resin restoration, pit and fissure sealant, preventive resin restoration, pulpotomy, pulpectomy/RCT, extraction and crown of the disabled patients were performed as 52.71%, 7.24%, 8.56%, 0.72%, 17.13%, 10.01% and 3.62% respectively whereas those made up as 56.31%, 1.27%, 0.13%, 2.29%, 19.87%, 7.90% and 12.23% in the control group. Thirty-five (56.45%) disabled patients and forty-three (75.44%) controls recalled. Problem teeth within one year after operation in diabled patients and controls were both nearly twice as much as the number within half a year. Restoration loss/fractured mainly occurred in anterior primary teeth while secondary/ recurrent caries and pulpitis/perapical periodontitis mostly occurred in primary molars. CONCLUSION Oral health status in our disabled children and adolescents is poor. Though dental treatment under GA is an effective way to improve the oral health of disabled children and adolescents, periodic follow-ups and family oral health care are equal important for oral health maintenance.
Adolescent ; Anesthesia, Dental ; Anesthesia, General ; Child ; Child, Preschool ; Dental Care ; Dental Caries ; Dental Restoration Repair/methods* ; Disabled Children ; Female ; Humans ; Male ; Molar ; Pediatric Dentistry ; Pit and Fissure Sealants ; Pulpitis ; Retrospective Studies ; Tooth, Deciduous