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.

The study was conducted in a mountainous district in the year 2000, mentioning the relationship between handicapped children and their parents' education and knowledge about the technical rehabilitation and their family's living standard. The result shows that 95% of parents are literacy, most of them (57.4%) have some level of secondary school. But 78.3% of them have not approached to the community-based rehabilitation (CBR). According to the study, 38.3% of 115 families are poorer than others in comparison with neighboring families. All of the parents practiced not well technical rehabilitation on CBR.
Disabled Children ; Education

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.

PURPOSE: Purpose of this study was to investigate factors influencing wellness, and provide basic data for development of intervention programs to improve wellness in mothers of children with disabilities. METHODS: Participants were 147 mothers of children with disabilities from an elementary school and kindergarten for children with disabilities located in J and C cities in G province. Data were collected from February 24 to April 24, 2015 using questionnaires. RESULTS: Mean scores were 3.24+/-0.38 of 5 for wellness, 2.40+/-0.41 of 4 for self-esteem, and 2.87+/-0.36 of 4 for family function. There were significant differences in wellness according to religion, education, and type of education program for the children. There were positive correlations between self-esteem, family function, social support, and wellness. Factors influencing wellness were selfesteem (beta =.450), family function (beta =.313), type of education program for the children (beta =.140), and religion (beta =.127). These factors explained 42.7% of the variance in wellness. CONCLUSION: Findings show that levels of wellness in these mothers are not sufficient to allow them to care for their children and to maintain their own overall health. Therefore to increase wellness of mothers of children with disabilities, intervention strategies that focus on improving self-esteem and family functioning need to be developed.
Child* ; Disabled Children* ; Education ; Humans ; Mothers* ; Self Concept*

PURPOSE: The purpose of this study is to investigate factors affecting the quality of life in the mothers of children with disability and to identify the relationships between mother's quality of life, self-efficacy, social support and parenting-stress. METHODS: The subjects were 160 mothers of children with disabilities in G city. The data were collected using a structured questionnaire and analyzed with SPSS/PC+ 21.0. RESULTS: There was a significant relationship between mother's quality of life and self-efficacy (p<.001), and their quality of life and social support (p<.001). Mother's Quality of life was negatively correlated with parenting stress as well (p<.001). Variables affecting their quality of life were self-efficacy, social support, parenting-stress and the income of families with children with disability. The four factors accounted for 38.7% of the quality of life. CONCLUSION: The results of the study show that self-efficacy, social support and parenting-stress are the most significant factors affecting mother's quality of life. It is urgently needed to develop nursing intervention that will enhance mothers' quality of life, thereby helping them to lead a more decent life.
Child* ; Disabled Children* ; Humans ; Mothers* ; Nursing ; Parenting ; Parents ; Quality of Life*

PURPOSE: The purpose of this study was to investigate the factors affecting depression in mothers of children with disabilities and to identify the relationships between the depression, parenting-stress and self-esteem. METHODS: The participants were 100 mothers of children with disabilities lving in G city. Data were collected using a structured questionnaire and analyzed using descriptive statistics, t-test, ANOVA and Pearson Correlation Coefficients with SPSS/PC+ 21.0. RESULTS: There was a significant relationship between depression and parenting stress (p<.001). Depression was negatively correlated with self-esteem (p<.001). Variables affecting depression were parenting-stress, self-esteem and family income. The three factors accounted for 38.7% of the depression. CONCLUSION: The results of the study show that parenting-stress and selfesteem are the most significant factors affecting depression. There is an urgent need to develop nursing interventions to reduce levels of depression in mothers of children with disabilities and to help them lead a healthier life.
Depression* ; Disabled Children* ; Humans ; Mothers* ; Nursing ; Parenting ; Parents ; Surveys and Questionnaires

PURPOSE: This study used a phenomenological method, which is a qualitative study, in order to understand the vivid experience of parents who have a disabled child. METHODS: The number of participants was 10. The subjects of this study were parents who are raising their disabled child who attends a special school or normal middle or high schools in D city. The period for collecting materials was from September 2005 to July 2007. The phenomenological analysis method suggested by Giorgi was used. RESULTS: The meanings of the child parenting experience of parents with a disabled child are (1) feeling of frustration of the delayed treatment, (2) difficult to accept the diagnosis of disability, (3) having eyes centered on her child, (4) accepting the disabled child, (5) giving all his energy to his disabled child, (6) making efforts for his family's unity, (7) recognizing the difficulty of parenting disabled child, (8) recognizing the difficulty of education for disabled child, (9) feeling pitiful for his their normal children, (10) planning for disabled child's future. CONCLUSIONS: All the programs for disabled child should be programed for their entire life. It is necessary to provide physical, psychological, emotional, social and economic nursing intervention to relieve or reduce the burden of parents with disabled children.
Child ; Disabled Children ; Eye ; Frustration ; Humans ; Parenting ; Parents ; Qualitative Research

PURPOSE: This study was to describe the burden of aged parents caring for adult children with disabilities and related factors. METHODS: The subjects were 123 caregivers aged over 65 who were caring for 18-year-old or older children with disabilities. The research tool of this study was a structured questionnaire on family burden. Data were collected from June 3 to 25, 2010, and analyzed by Cronbach's alpha, mean, standard deviation, t-test, and ANOVA using SAS 9.2 program. RESULTS: The major findings of this study were as follows. Elderly parents caring for adult children with disabilities perceived a moderate level of burden. The burden from concern over their children's future was highest, and economic and physical burdens were higher when the parents were younger. Burden was significantly different according to parents' characteristics such as gender, perceived health status, disease, the costs of caring for disabled children, and children's characteristics such as disability rating, health status, and ADL. CONCLUSION: In order to reduce the burden of elderly parents caring for adult children with disabilities, we need to improve their health status and assess comprehensive policies.
Activities of Daily Living ; Adolescent ; Adult Children* ; Adult* ; Aged ; Caregivers ; Disabled Children ; Humans ; Parents* ; Surveys and Questionnaires

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.

Children with an intellectual disability often demonstrate lack of cooperation during dental treatment and require behavioral management. A child with mild intellectual disability can be managed adequately using restraints and medication. However, in cases of profound intellectual disability, dental treatment under general anesthesia is usually required. In cases where the patient is an intellectually disabled child who has intellectually disabled parents, it is difficult to evaluate the patient's preoperative condition and to obtain consent for treatment under general anesthesia. Furthermore, they are unable to respond to emergencies after treatment. Therefore, dental treatment should be performed under general anesthesia with hospitalization for children with an intellectual disability. This case presents the dental treatment of an intellectually disabled child, who has intellectually disabled parents, and who required general anesthesia and hospitalization.
Anesthesia, General* ; Child ; Dental Care for Disabled ; Disabled Children* ; Emergencies ; Hospitalization ; Humans ; Intellectual Disability ; Parents*