1.“It’s as if I’m the one suffering”: Narratives of parents of children with disability in the Philippines
Gideon LASCO ; Christian Edward L . NUEVO ; Marie Lauren P. NOLASCO ; Ferlie Rose Ann N. FAMALOAN ; Josephine R. BUNDOC ; Donna Isabel S. CAPILI ; Raoul BERMEJO
Acta Medica Philippina 2022;56(7):30-42
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.
Disabled Children
2.The relationships between handicapped children and their parents' education and knowledge about the technical rehabilitation and their family's living standard
Journal of Medical and Pharmaceutical Information 1998;(1):36-39
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
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Education
3.Factors Affecting Depression in Mothers of Children with Disabilities.
Child Health Nursing Research 2015;21(1):46-54
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*
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Disabled Children*
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Humans
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Mothers*
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Nursing
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Parenting
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Parents
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Surveys and Questionnaires
4.Factors Affecting the Life Quality in Mothers of Children with Disabilities.
Journal of the Korean Society of Maternal and Child Health 2016;20(2):119-131
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*
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Disabled Children*
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Humans
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Mothers*
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Nursing
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Parenting
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Parents
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Quality of Life*
5.Influence of Self Esteem, Family Function and Social Support on Wellness of Mothers of Children with Disabilities.
Child Health Nursing Research 2016;22(1):1-10
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*
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Disabled Children*
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Education
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Humans
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Mothers*
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Self Concept*
6.Parenting Experience of Parents with a Disabled Child.
Ki Young LEE ; In Sook PARK ; Heeyoung SO
Korean Journal of Rehabilitation Nursing 2008;11(1):32-40
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
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Disabled Children
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Eye
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Frustration
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Humans
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Parenting
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Parents
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Qualitative Research
7.The Burden of Aged Parents Caring for Adult Children with Disabilities.
Journal of Korean Academy of Community Health Nursing 2010;21(4):439-447
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
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Adolescent
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Adult Children*
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Adult*
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Aged
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Caregivers
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Disabled Children
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Humans
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Parents*
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Surveys and Questionnaires
8.The Experience of Caring by Nursing Students in handicapped children.
Korean Journal of Child Health Nursing 1997;3(2):203-218
Caring is the essence and it is the central and unifying domain for the body of knowledge and practice in nursing. However a clear conceptualization of what caring in nursing does not yet exist. The purpose of this study is to research the phenomenon of caring by obtaining verbal description of the experience of caring in handicapped children, to provide basic information for developing theory of caring, and to teach the humanism centered education. The study design was a descriptive study using phenomenological method. The subjects for this study were 26 nursing students who cared for handicapped children in S rehabilitation center form August, 24 to October. 29 1994. Van kamm's phenomenological method was used for the analysis of the datas. The results are as follows : The experience of caring was classified with 15 common elements and 61 descriptive expressions form 120 raw data. The common elements were
Disabled Children*
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Disabled Persons*
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Education
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Humanism
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Humans
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Nursing*
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Rehabilitation Centers
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Students, Nursing*
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Child Health
9.Dental treatment under general anesthesia in an intellectually disabled child with intellectually disabled parents.
Jeong Hwa HAN ; Hong Keun HYUN ; Young Jae KIM ; Jung Wook KIM ; Ki Taeg JANG ; Chong Chul KIM ; Sang Hoon LEE ; Teo Jeon SHIN
Journal of Dental Anesthesia and Pain Medicine 2016;16(3):213-216
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*
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Child
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Dental Care for Disabled
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Disabled Children*
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Emergencies
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Hospitalization
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Humans
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Intellectual Disability
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Parents*
10.Uncertainty, Social Suppot & Powerlessness in Mothers of Handicapped Children.
Korean Journal of Child Health Nursing 1999;5(2):151-166
The purposes of this study were to measure the degree of perceived uncertainty, social support & powerlessness, to examine the relationship between the perceived uncertainty, social support & powerlessness and then to find the predictors of powerlessness in mother's of handicapped children. The subjects of this study consist of 102 mothers of handicapped children, registered at rehabilitation & handicapped children school. Data was collected from September 1998 to March 1999. The tools used in this study were Mishel's the Parents' Perception of Uncertainty Scale (28 item, 4 likert scale), Miller's Powerlessness measurement Scale(28 item, 4 likert scale) & Cohen's Interpersonal Support Evaluation List(40 items, 4 liken scale). Data was analyzed by t-test, ANOVA, Duncan comparison, Pearson Correlation coefficient & Stepwise multiple regression Results of this study are summarized as follows : 1. Mothers perceived their uncertainty to be slightly high(Mn 2.50). The degree of perceived uncertainty by the four components were followed as lack of clarity(2.69), unpredictability(2.56), ambiguity(2.56) & lack of information(2.46). The degree of perceived uncertainty of the mothers of handicapped children revealed to be influenced significantly by age of children, admission experience, disability types of children. 2. The degree of mothers' powerlessness was measured to be slightly high(Mn 2.14). The degree of perceived powerlessness of the mothers with handcapped children revealed to be influenced significantly by age of children, duration of illness admission experience, & marital status of the mothers. 3. Mothers perceived their social support to be slightly high(Mn 2.71). The degree of perceived social support revealed to be influenced significantly by sex of children, married state of mothers. 4. Mothers' uncertainty was related positively to the mothers' powerlessness(r=.33, p=.0008). And also mothers' powerlessness was related inversely to social support(r=-.50, p=.0001). But, mothers' uncertainty was not related to social support significantly. 5. To analyze the variables which affect powerlessness, stepwise regression was implemented. As a result, about 61% of the powerlessness were explained by social support, marital status of the mothers and perceived uncertainty. Based upon these results, it is recommended that the nurses, who are caring handicapped children and their families, provide various support programs for them to overcome their difficulties. Also programs which decrease the uncertainty & powerlessness used social support multidimensionally & individually are recommended to be developed.
Child
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Disabled Children*
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Disabled Persons*
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Humans
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Marital Status
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Mothers*
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Rehabilitation
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Uncertainty*
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Child Health