• Title/Summary/Keyword: parents of children with disabilities

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A Study on Family Stress and Coping of the Parents of Child who has a Cleft Lip or / and Cleft Palate (구순 및 구개열 환아 부모의 가족 스트레스와 대처에 관한 연구)

  • Roh Nan Lee;Tak Young, Ran
    • Child Health Nursing Research
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    • v.2 no.2
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    • pp.45-57
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    • 1996
  • A serious disease in a family influences the entire family member given the fact that the members closely interact with each other. Especially in terms of pediatric nursing, study on family gains importance as the need to care of families whose children with developmental disabilities and chronic disease This study was done based on The Resiliency Model of Family Adjustment and Adaptation(McCubbin, 1991) is intended to examine the stress of parents whose children suffer from cleft lip or /and cleft palate. It also helps them to cope with the stress and analyze the relationship between the stress and coping This study used Family Inventory of Life Events and Changes (FILE) and Coping Health Inventory for Parents(CHIP) for measuring family stress and coping. The two instruments are revised to fit the social and cultural environment of Korean culture. Data collection was done from April 18, 1996 to May 18, 1996 at 8 University medical centers located in Seoul. Those who answered questionnaires were 84 parents whose children have cleft lip or /and cleft palate. SPSS PC+ was used to analyze the data collotted. Programs used for data analysis were t-test, ANOVA, Pearson correlation coefficient. The study is summarized as follows .1. The average score of family stress is 10.46(percentage of the full score 24.90) and 'finance and business strains'(3.25), and 'intrafamily strains'(2.65) ranked the highest. The average score of family's coping is 1.93, which is close to the answer of' moderately helpful' and they are measured to put their utmost efforts to' intergration and cooperation of family and optimistic definition on the situation'. 2. There is no significant statistical correlation between the family stress and coping. 3. Mothers show more stress than fathers in the parts of 'illness and family care strains' and 'losses'(t〓-2.34, t〓-2.32, p<.05). 4. Fathers show more willingness to cope with the stress than mothers do in the parts of' seeking social support','self-esteem','emotional comfort' 5. Mothers are more stress than fathers in the parts of family stress and its coping with it by usual traits(t〓-2.78, p<.05). Parents with religion are measured to cope more willingly than those who are not 6. Income of a family shows positive correlationship with family coping (r〓.28, p<.05). The study shows that gender difference is significant variable in studying on family stress and coping. Mothers get more stress than fathers, which has much to do with the fact that they are in charge of raising children and keeping houseworks. Accordingly, managing family crisis and its survival can be induced by giving support for the mothers, studying fathers including the rest of the family members and giving nursing care and arbitration ; religious background is also considered to be one of the important factors in family stress , judging from the relationship between family income and family's coping, caring given to suffering children is needed on societal levels. The above considerations bring up the need to have a longitudinal study of children with congenital anomaly including cleft lip or /and cleft palate and their families about family stress and coping. Resiliency programs on family system and their effectiveness and the relationship between the enlarged families with social and cultural values reflecting Korean tradition are also needed to be studied.

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Gender and healthcare issues related to the Protected Birth Act in Korea (보호출산제 시행과 젠더 및 보건의료 이슈)

  • Jiah Jeong
    • Women's Health Nursing
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    • v.30 no.2
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    • pp.101-106
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    • 2024
  • This paper discusses the implications of the birth notification system and the Protected Birth Act in Korea. Aiming to prevent infanticide and abandonment of infants, the law will enter into force on July 19, 2024 in South Korea. The birth notification system mandates that both parents and the head of the medical institution where the birth occurred must report the event. In parallel, the Protected Birth Act will be implemented, allowing pregnant women in crisis who wish to remain anonymous, the option to give birth outside of a hospital setting in a way that safeguards the life and health of the child. However, many issues are being raised in Korean society in advance of the implementation of the Protected Birth Act. There is widespread concern that the Protected Birth Act fails to protect either women or children, especially as it raises issues regarding the need for legislation to protect children with disabilities and to address gaps for migrant women and children. This paper examines the gender and healthcare issues relating to the Protected Birth Act, focusing on women's health and human rights. The Act continues to perpetuate discrimination against out-of-wedlock pregnancies and upholds the ideology of the traditional family model. Furthermore, the legislative process did not address protective measures for the various reasons behind child abandonment. Critical issues such as women's autonomy, safe pregnancy termination, and paternal responsibility in childbirth are also notably absent. However, with the Act set to take effect soon, it is crucial for healthcare providers to comprehend the rationale and procedures associated with birth notification and the Protected Birth Act, and to prepare for its nationwide implementation. The law defines the socially vulnerable as its main beneficiaries, and it is necessary to strengthen social safety nets to improve their access to healthcare, eliminate prejudice and discrimination against out-of-wedlock pregnancies, and embrace the diversity of our society. We eagerly anticipate future discussions on gender and healthcare issues, as well as amendments to the law that reflect real-world circumstances to provide genuine protection for pregnant women in crisis and their infants.

Correlation Between Sensory Processing Ability and Characteristics of Eating for Children With Pervasive Developmental Disorders (전반적 발달장애아동의 감각처리능력과 섭식 특성의 상관관계)

  • Kang, Hyun-Jin;Chang, Moon-Young;Kim, Kyeong-Mi
    • The Journal of Korean Academy of Sensory Integration
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    • v.9 no.2
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    • pp.41-49
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    • 2011
  • Objective : This study aims to compare children with and without pervasive developmental disorders in terms of the sensory processing ability and behavioral characteristic of oral feeding. This study also aims to identify correlation between sensory processing and characteristics of eating. Methods : The subjects of this research were normal children and those who have diagnosis of a pervasive developmental disorder, aged from 4 to 6. The research instruments were composed of Short Sensory Profile (SSP), Brief Autism Mealtime Behavior Inventory (BAMBI) and Food Items of the Sensory Checklist. Data collection was done by a professional survey institute located in 10 cities including Busan, South Korea. The survey questionnaires were distributed to 455 parents of children with and without pervasive developmental disabilities through the survey institutes. Total 263 answers were collected out of 455 questionnaires (62%) and 154 answers were used in data analysis. Out of 154 answers, 45 were for children with pervasive developmental disabilities and 109 were for normal children. Data analysis was done to identify correlations between sensory processing and characteristics of eating such as eating behavior and oral feeding. Results : 1. There was a significant difference between children with and without pervasive developmental disorders in all area of sensory processing ability (p<.05). 2. There was no difference between children with and without pervasive developmental disorders in eating behavior (p=0.881) and oral feeding (p=0.324). 3. In the group of children with a pervasive developmental disorders, it is found that there is negative correlation between sensory processing, eating behavior and oral feeding (r=-0.384, p<.01). 4. A remarkable significant correlation was found between sensory processing and eating behavior especially in taste/smell sensitivity (r=-0.6, p<.01) and auditory filtering (r=-0.326, p<.05). The correlation between sensory processing and oral feeding was most significant in under responsiveness/seeking sensation (r=-0.372, p<.05) and auditory filtering (r=-0.382, p<.05). Conclusion : This study found that there are significant correlations between sensory processing ability and some characteristics of eating behaviors for children with pervasive developmental disorders. This information can be useful to develop a program to intervene eating behavior problems of children with pervasive developmental disorders.

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A Study on Validity of the Korean Version of the Assessment of Life Habits (LIFE-H 1.0) in Children (아동용 참여평가도구 한글판 Life Habits Assessment(LIFE-H 1.0)의 타당도 연구)

  • Woo, Ye-Shin;Lee, Ye-Jin;Kim, Yeon-Ju;Kang, Jae-Won;Park, Hae Yean
    • Therapeutic Science for Rehabilitation
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    • v.6 no.2
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    • pp.59-70
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    • 2017
  • Objective: It is important to assess the participation and understand the characteristics of participation for setting goal of the child's treatment and strengthening participation. In this study, we verified the validity of the LIFE-H 1.0, so that domestic occupational therapists can systematically evaluate children's participation. Methods: This study was conducted for about 2 months from February to April 2016 in 47 children with disabilities and non-disabled children. We divided the children into two groups aged 0-4 years and 5-13 years old and conducted a self-report questionnaire to parents. The collected data were verified by SPSS(Statistical Package for Social Science) statistical analysis program. Results: There was no difference between the two groups in general characteristics. In comparison of two groups, a significant difference(p<.05) was found in the LIFE-H 1.0 total performance and satisfaction score and the high discriminant validity was verified. Conclusion: The ultimate goal of occupational therapy is to increase participation. Therefore, the occupational therapist must be able to assess the level of participation and than set the goal of intervention. This study confirms the high level of validity and expects that Korean version of LIFE-H 1.0 will be widely used in clinical field and research.

Satisfaction Survey of Occupational Therapy Service at Specialized Child-care Centers for Disabled in Gyeongbuk (경북지역 장애아전문어린이집의 작업치료서비스에 대한 만족도 조사)

  • Kang, Suk-Gu;Lee, Chun-Yeop
    • The Journal of Korean society of community based occupational therapy
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    • v.5 no.1
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    • pp.55-62
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    • 2015
  • Objective : The purpose of this study was to investigate the satisfaction of occupational therapy service for parents of children with disabilities using specialized child-care centers for disabled in Gyeongbuk. Methods : The subjects of this study were 104 parents who have experience in occupational therapy at 14 specialized child-care centers for disabled in Gyeongbuk. A questionnaire was conducted from July, 2014 to March, 2015. Descriptive statistics of frequency, mean, standard deviation, and One-Way ANOVA study were used to analyze data. Results : Disabled children got occupational therapy at first when they were 3.25 years, on average. Duration of occupational therapy use were 31.84 month, on average. The subjects determined to got occupational therapy mostly through consultation nurseries(40.4%). Most of them got speech therapy(78.0%) other than receiving occupational therapy service, responded very necessary to occupational therapy(69.3%). Satisfaction of occupational therapy service were 4.49 point at attitude of occupational therapists, 4.36 point at occupational therapy program, and 4.26 point at environment of occupational therapy room. Attitude of occupational therapists were the highest satisfied. Conclusion : This study would contribute to effective and meaningful occupational therapy through objective view

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The ages and stages questionnaire: screening for developmental delay in the setting of a pediatric outpatient clinic (ASQ :소아과외래에서의 발달지연 선별검사)

  • Kim, Eun Young;Sung, In Kyung
    • Clinical and Experimental Pediatrics
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    • v.50 no.11
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    • pp.1061-1066
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    • 2007
  • Purpose : Early identification of developmental disabilities allows intervention at the earliest possible point to improve the developmental potential. The Ages and Stages Questionnaire (ASQ), a parent- completed questionnaire, can be used as a substitute for formal screening tests. The purpose of this study was to evaluate the validity of the Korean version of the ASQ (K-ASQ) as a screening tool for detecting developmental delay of young Korean children in the setting of a busy pediatric outpatient clinic. Methods : Parents completed the K-ASQ in the waiting room of the pediatric outpatient clinic of St. Mary's Hospital, Catholic University Medical College. Out of 150 completed the ASQ, 67 who were born term and had no previous diagnosis of developmental delay, congenital anomalies, or neurological abnormalities were enrolled. The cut-off values of less than 2 standard deviations (SD) below the mean for the ASQ were used to define a "fail", and children who failed in one or more domains tested were classified as "screen-positive". Diagnosis of developmental delay was made when the developmental indices fell below -1 SD of the Bayley Scales of Infant Development-II. Results : (1) The mean age of children was $16.4{\pm}7.4$ months. Ten children (14.9%) were small-for- gestational age infants. The mean birth weight and gestational age were $3.1{\pm}0.6kg$ and $38.8{\pm}1.4$ weeks. Nine children (13.4%) were twins and 33 (49.0%) were male. The mean maternal education in years was $13.6{\pm}2.4$, and 31.3% had full-time jobs. The time for completing the ASQ was $10.2{\pm}3.0$ minutes. (2) Seventeen children (25.4%) were classified as screen-positive, four of them were delayed in development. Among eight children diagnosed with developmental delay, four were screen-positive and the other four were screen-negative by the ASQ. (3) The test characteristics of the ASQ were as follows: sensitivity (50.0%); specificity (78.0%); positive predictive value (23.5%); negative predictive value (92.0%). Conclusion : The high negative predictive value of the K-ASQ supports its use as a screening tool for developmental delay in the setting of a pediatric outpatient clinic.

A Qualitative Study on the Growth and Development of Peer Counselors in the Field of Disability based on Grounded Theory (근거이론에 의한 장애분야 동료상담사들의 성장과 발전에 관한 질적연구)

  • Park, Jong-Hwan;Park, Hee-Sung
    • The Journal of the Korea Contents Association
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    • v.22 no.1
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    • pp.516-534
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    • 2022
  • The purpose of this study is to explore the growth and development process of peer counselors in the field of disability. The field experiences of 19 peer counselors with disabilities and peer counselors who parents of children with disabilities were analyzed using the grounded theory method. As a result, first, central phenomenon were 'assuming the role of a peer counselor' and 'motor of role performance'. Intervening conditions were 'the perception that counseling is difficult', 'self-consciousness deriving from the lack of competency' and 'the status of insufficient peer counseling'. Action/interaction strategies were 'strengthening inner capacities' and 'promoting external activities'. Consequences were 'change and growth as a peer counselor', 'an expansion of activities other than peer counseling', and 'propose development tasks for peer counseling'. Second, their growth and development process was confirmed in four stages: 'the stage of introductory counseling education beyond disability', 'the stage of growth through change', 'the stage of career exploration through Competency Enhancement', and 'the stage of entry through role challenge'. Third, main theme was 'growth and development as a peer counselor is based on capacity building'.

A Usability Testing on the Tablet PC-based Korean High-tech AAC Software (태블릿 PC 기반 한국형 하이테크 AAC 소프트웨어의 사용성 평가)

  • Lee, Heeyeon;Hong, Ki-Hyung
    • Journal of the HCI Society of Korea
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    • v.7 no.2
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    • pp.35-42
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    • 2012
  • The purpose of this study was to evaluate the usability of the tablet PC-based Korean high-tech AAC(Augmentative Alternative Communication System) software. In order to develop an AAC software which is appropriate to Korean cultural/linguistic contexts and communication needs of the users, we examined the necessity and ease of use for the communication functions that are required in native Korean communication, such as polite expressions, tense expressions, negative expressions, subject-verb auto-matching, and automatic sentence generation functions, using a scenario-based user testing. We also investigated the users' needs, preferences, and satisfaction for the tablet PC-based Korean high tech AAC using a semi-structured and open questionnaires. The participants of this study were 9 special education teachers, 6 speech therapists, and 6 parents whose children had communication disabilities. The results of the usability testing of the tablet PC-based Korean high-tech AAC software presented positive responses in general, by indicating overall scores of above 4 out of 5 except in tense and negative expressions. The necessity and ease of use in the tense and negative expressions were evaluated relatively low, and it might be related to the inconsistent interface with the polite expressions. In terms of the user interface(UI), there were users' needs for clear visual feedback in the symbol selection and display, consistent interface for all functions, more natural subject-verb auto-matching, and spacing in the text within symbols. The results of the usability testing and users' feedback might serve as a guideline to compensate and improve the function and UI of the existing AAC software.

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Family Empowerment Scale: Factor Validation of the Original Form and Development of a Short Form (가족임파워먼트 척도(Family Empowerment Scale)의 요인구조 검증 및 단축형 척도 개발)

  • Jung, Soyon
    • The Journal of the Korea Contents Association
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    • v.13 no.7
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    • pp.214-227
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    • 2013
  • The primary objectives of this study are twofold. One is to examine the psychometric properties of Family Empowerment Scale(FES) developed by Koren, DeChillo and Frisen(1992). The other is to develope a short-form FES. Data collected from 337 members of Parents' Solidarity of Children with Disabilities were used. FES had good internal consistency, but the results of confirmatory factor analysis(CFA) did not support the theoretical factor structure of the scale. Basic analyses such as correlation and descriptive analysis were performed to examine the characteristics of individual items and identify the limitation of the orignal FES. In addition, a series of CFA were carried out to develop a short-form FES. Finally 15 items were selected based on theoretical rationale and the results of CFA. Cronbach's ${\alpha}$ and the model fit indices for the short-form FES indicated that this measure has good construct validity as well as internal consistency. In discussion, usefulness and potential contribution of this study were explored in relation to content development in the area of measuring instruments.