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Jaafar, N H; Othman, A; Majid, N A; Harith, S; Zabidi-Hussin, Z

Parent-report instruments for assessing feeding difficulties in children with neurological impairments: a systematic review Journal Article

Developmental Medicine and Child Neurology, 61 (2), pp. 135-144, 2019, ISSN: 00121622, (cited By 1).

Abstract | Links | BibTeX | Tags: Assessment of Humans, Autism, Behavioural Paediatric Feeding Assessment Scale, Caloric Intake, Child Behaviour, Child Parent Relation, Childhood Disease, Children, Children's Eating Behaviour Inventory, Complication, Construct Validity, Content Validity, Criterion Related Validity, Cystic Fibrosis, Eating Disorder, Enalapril Maleate, Eosinophilic Gastrointestinal Disorder, Esophagus Atresia, Feeding, Feeding and Eating Disorders, Feeding Behavior, Feeding Difficulty, Food Intake, Human, Nervous System Diseases, Neurologic Disease, Nutritional Assessment, Parents, Pediatric Assessment Scale for Severe Feeding Problem, Pediatric Eating Assessment Tool, Predictive Value, Preschool, Preschool Child, Priority Journal, Procedures, Psychology, Psychometrics, Psychometry, Quality of Life, Receiver Operating Characteristic, Review, Scoring System, Self Disclosure, Sensitivity and Specificity, Syndrome CHARGE, Systematic Review, Test Retest Reliability

@article{Jaafar2019135,
title = {Parent-report instruments for assessing feeding difficulties in children with neurological impairments: a systematic review},
author = {N H Jaafar and A Othman and N A Majid and S Harith and Z Zabidi-Hussin},
url = {https://www.scopus.com/inward/record.uri?eid=2-s2.0-85052789833&doi=10.1111%2fdmcn.13986&partnerID=40&md5=d02a2bfcd15a25988b9c23855cd87444},
doi = {10.1111/dmcn.13986},
issn = {00121622},
year = {2019},
date = {2019-01-01},
journal = {Developmental Medicine and Child Neurology},
volume = {61},
number = {2},
pages = {135-144},
publisher = {Blackwell Publishing Ltd},
abstract = {Aim: This study aimed to review the psychometric properties and clinical application of parent-report instruments that assess feeding difficulties in children with neurological impairments. Method: Papers were identified through five electronic databases based on 15 keywords and were included if they met the following criteria: published in English, described the implementation of parent-report instruments, and included children with neurological impairments (either in the report or a related study population). Results: In total, 1220 relevant abstracts were screened and 22 full-text articles were evaluated. The following six parent-report instruments met the inclusion criteria: (1) Screening Tool of Feeding Problems applied to children, (2) Paediatric Eating Assessment Tool, (3) Paediatric Assessment Scale for Severe Feeding Problems, (4) Montreal Children's Hospital Feeding Scale, (5) Children's Eating Behaviour Inventory, and (6) Behavioural Paediatric Feeding Assessment Scale (BPFAS). Based on comprehensive psychometric testing and consistently good results, the BPFAS was considered the most valid and reliable instrument. The BPFAS also showed good clinical applicability because it was readily available, required a short administration time, and used a simple scoring system. Interpretation: We reviewed the available parent-report instruments for assessing feeding difficulties in children with neurological impairments. The BPFAS had the best psychometric properties and clinical applicability. What this paper adds: Six parent-report instruments were suitable for assessing feeding in children with neurological impairments. The Behavioural Paediatric Feeding Assessment Scale (BPFAS) has the strongest psychometric properties. The BPFAS also has good clinical applicability. © 2018 Mac Keith Press},
note = {cited By 1},
keywords = {Assessment of Humans, Autism, Behavioural Paediatric Feeding Assessment Scale, Caloric Intake, Child Behaviour, Child Parent Relation, Childhood Disease, Children, Children's Eating Behaviour Inventory, Complication, Construct Validity, Content Validity, Criterion Related Validity, Cystic Fibrosis, Eating Disorder, Enalapril Maleate, Eosinophilic Gastrointestinal Disorder, Esophagus Atresia, Feeding, Feeding and Eating Disorders, Feeding Behavior, Feeding Difficulty, Food Intake, Human, Nervous System Diseases, Neurologic Disease, Nutritional Assessment, Parents, Pediatric Assessment Scale for Severe Feeding Problem, Pediatric Eating Assessment Tool, Predictive Value, Preschool, Preschool Child, Priority Journal, Procedures, Psychology, Psychometrics, Psychometry, Quality of Life, Receiver Operating Characteristic, Review, Scoring System, Self Disclosure, Sensitivity and Specificity, Syndrome CHARGE, Systematic Review, Test Retest Reliability},
pubstate = {published},
tppubtype = {article}
}

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Adib, N A N; Ibrahim, M I; Rahman, A A; Bakar, R S; Yahaya, N A; Hussin, S; Mansor, Wan W N A

Perceived stress among caregivers of children with autism spectrum disorder: A state-wide study Journal Article

International Journal of Environmental Research and Public Health, 16 (8), 2019, ISSN: 16617827, (cited By 0).

Abstract | Links | BibTeX | Tags: Adaptation, Adolescent, Adult, Article, Autism, Autism Spectrum Disorders, Caregiver, Caregiver Burden, Child Care, Children, Coping Behaviour, Cross-Sectional Study, Female, Follow Up, Health Care, Health Care Access, Human, Infant, Learning Disorder, Malaysia, Male, Mental Stress, Middle Aged, Multiple Linear Regression Analysis, Newborn, Normal Human, Patient Transport, Perceived Stress Scale, Prediction, Preschool, Preschool Child, Psychological, Psychology, Psychometrics, Psychometry, Quality of Life, Stress, Tertiary Care Center, University Hospital

@article{Adib2019b,
title = {Perceived stress among caregivers of children with autism spectrum disorder: A state-wide study},
author = {N A N Adib and M I Ibrahim and A A Rahman and R S Bakar and N A Yahaya and S Hussin and W N A Wan Mansor},
url = {https://www.scopus.com/inward/record.uri?eid=2-s2.0-85065303613&doi=10.3390%2fijerph16081468&partnerID=40&md5=fc871375f0d307a95820cd87c57ea270},
doi = {10.3390/ijerph16081468},
issn = {16617827},
year = {2019},
date = {2019-01-01},
journal = {International Journal of Environmental Research and Public Health},
volume = {16},
number = {8},
publisher = {MDPI AG},
abstract = {Background: Caregivers of children with autism spectrum disorder (ASD) experience increased stress and more significant negative caregiving consequences than those with typically developing children. There is a lack of studies specifically focusing on stress among caregivers with ASD children in Asian countries. The current study examines levels of perceived stress and factors associated with it among caregivers in Kelantan, Malaysia. Methods: In a cross-sectional study, the Malay version of the Perceived Stress Scale (PSS) was administered to 227 caregivers of children with ASD. The caregivers were recruited from ASD databases in four tertiary hospitals in Kelantan and a meeting was set up during the child’s follow-up in the clinic. Multiple linear regression analyses were applied to determine the predictors of perceived stress. Results: The mean total perceived stress score was 20.84 (4.72). This was considered higher than average. Higher perceived stress was significantly predicted among caregivers who live far from the health institution, caregivers who do not own transportation to bring the child to the treatment center, and caregivers who have an ASD child with a learning disability. Conclusion: Caregivers of an ASD child perceived significant stress while taking care of their children. Institutions should alleviate the factors that were predicted to increase the caregivers’ perceived stress to improve the quality of the lives of children and ASD families as a whole. © 2019 by the authors. Licensee MDPI, Basel, Switzerland.},
note = {cited By 0},
keywords = {Adaptation, Adolescent, Adult, Article, Autism, Autism Spectrum Disorders, Caregiver, Caregiver Burden, Child Care, Children, Coping Behaviour, Cross-Sectional Study, Female, Follow Up, Health Care, Health Care Access, Human, Infant, Learning Disorder, Malaysia, Male, Mental Stress, Middle Aged, Multiple Linear Regression Analysis, Newborn, Normal Human, Patient Transport, Perceived Stress Scale, Prediction, Preschool, Preschool Child, Psychological, Psychology, Psychometrics, Psychometry, Quality of Life, Stress, Tertiary Care Center, University Hospital},
pubstate = {published},
tppubtype = {article}
}

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Ooi, K L; Ong, Y S; Jacob, S A; Khan, T M

A meta-synthesis on parenting a child with autism Journal Article

Neuropsychiatric Disease and Treatment, 12 , pp. 745-762, 2016, ISSN: 11766328, (cited By 44).

Abstract | Links | BibTeX | Tags: Adaptation, Article, Attitude to Health, Attitude to Mental Illness, Autism, Child Care, Child Parent Relation, Childhood, Family, Family Centered Care, Health Care, Health Care Delivery, Health Education, Human, Parental Attitude, Parental Stress, Quality of Life, Social Aspect, Systematic Review, Wellbeing

@article{Ooi2016745,
title = {A meta-synthesis on parenting a child with autism},
author = {K L Ooi and Y S Ong and S A Jacob and T M Khan},
url = {https://www.scopus.com/inward/record.uri?eid=2-s2.0-84962625349&doi=10.2147%2fNDT.S100634&partnerID=40&md5=48b432dc361f8f3c373ed3b481e01e4c},
doi = {10.2147/NDT.S100634},
issn = {11766328},
year = {2016},
date = {2016-01-01},
journal = {Neuropsychiatric Disease and Treatment},
volume = {12},
pages = {745-762},
publisher = {Dove Medical Press Ltd.},
abstract = {Background: The lifelong nature of autism in a child has deep implications on parents as they are faced with a range of challenges and emotional consequences in raising the child. The aim of this meta-synthesis was to explore the perspectives of parents in raising a child with autism in the childhood period to gain an insight of the adaptations and beliefs of parents toward autism, their family and social experiences, as well as their perceptions toward health and educational services. Methods: A systematic search of six databases (PubMed, EMBASE, PsychInfo, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, and Database of Abstracts of Reviews of Effects [DARE]) was conducted from inception up to September 30, 2014. Full-text English articles of qualitative studies describing parents’ perceptions relating to the care of children younger than 12 years of age and diagnosed with a sole disorder of autism were included. Results: A total of 50 eligible articles were appraised and analyzed, identifying four core themes encompassing all thoughts, emotions, and experiences commonly expressed by parents: 1) The Parent, 2) Impact on the Family, 3) Social Impact, and 4) Health and Educational Services. Findings revealed that parents who have a child with autism experienced multiple challenges in different aspects of care, impacting on parents’ stress and adaptation. Conclusion: Health care provision should be family centered, addressing and supporting the needs of the whole family and not just the affected child, to ensure the family’s well-being and quality of life in the face of a diagnosis of autism. © 2016 Ooi et al.},
note = {cited By 44},
keywords = {Adaptation, Article, Attitude to Health, Attitude to Mental Illness, Autism, Child Care, Child Parent Relation, Childhood, Family, Family Centered Care, Health Care, Health Care Delivery, Health Education, Human, Parental Attitude, Parental Stress, Quality of Life, Social Aspect, Systematic Review, Wellbeing},
pubstate = {published},
tppubtype = {article}
}

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Paulraj, Smily Jesu Priya Victor; Alwi, Noor Asyikin Bt; Vetrayan, Jayachandran

Emotional Behaviour among Autism and Typically Developing Children in Malaysia Inproceedings

Abbas, MY; Bajunid, AFI; Thani, SKSO (Ed.): ASEAN-TURKEY ASLI QOL2015: AICQOL2015, pp. 28-35, Assoc Malaysian Environm Behaviour Researchers ELSEVIER SCIENCE BV, SARA BURGERHARTSTRAAT 25, PO BOX 211, 1000 AE AMSTERDAM, NETHERLANDS, 2016, ISSN: 1877-0428, (3rd AMER International Conference on Quality of Life (AicQoL), BINUS Univ, Fac Humanities, Dept Psychol, Jakarta, INDONESIA, APR 25-27, 2015).

Abstract | Links | BibTeX | Tags: Autism, Emotion, Emotional Response, Quality of Life, Typical Developing Children

Saleh, N M; Hassan, H; Fikry, A; Musa, R; Ahmad, S S; Ismail, Z; Samat, N; Hashim, R

Autism children: Cost and benefit analysis of using humanoid in Malaysia Conference

Institute of Electrical and Electronics Engineers Inc., 2015, ISBN: 9781479957651, (cited By 3).

Abstract | Links | BibTeX | Tags: Anthropomorphic Robots, Autism, Autism Therapies, Autism Treatments, Children, Cost Benefit Analysis, Costs, Curing, Diseases, Humanoid, Humanoid Robot, Manufacture, Quality of Life, Robotics, Robots

@conference{Saleh2015185,
title = {Autism children: Cost and benefit analysis of using humanoid in Malaysia},
author = {N M Saleh and H Hassan and A Fikry and R Musa and S S Ahmad and Z Ismail and N Samat and R Hashim},
url = {https://www.scopus.com/inward/record.uri?eid=2-s2.0-84959570138&doi=10.1109%2fROMA.2014.7295885&partnerID=40&md5=e3a60d8df8ebd4f38287d5f212c8ab1a},
doi = {10.1109/ROMA.2014.7295885},
isbn = {9781479957651},
year = {2015},
date = {2015-01-01},
journal = {2014 IEEE International Symposium on Robotics and Manufacturing Automation, IEEE-ROMA2014},
pages = {185-187},
publisher = {Institute of Electrical and Electronics Engineers Inc.},
abstract = {Autism is a permanent disorder that cause quality of life disturbance. As matter of research, there are no single interventions that can cure the heterogeneous syndrome. Since there is no cure for autism children, perhaps using humanoid can help the autism children in order to have appropriate therapy and treatment programs especially to the young children inflicted with it. Robots are normally used for industrial work, but hardly for therapy. Robots have been used to substitute human way back in the 19th century. They are beneficial to society regardless of the fields that they are being utilized. The health sector has been identified as one of the fields that benefit most as a result of using robotics. For decades, people fascinated with the technology's fiction of robots that look and act like a human Therefore, humanoid robots give benefits towards autism therapy for early detection. Many studies have been done in order to determine the ways to conduct autism treatment However, there is no study on cost and benefit analysis conducted using humanoid as a treatment for autism children. Therefore, this study will focus on the cost and benefit analysis of using humanoid for Malaysian autism children. © 2014 IEEE.},
note = {cited By 3},
keywords = {Anthropomorphic Robots, Autism, Autism Therapies, Autism Treatments, Children, Cost Benefit Analysis, Costs, Curing, Diseases, Humanoid, Humanoid Robot, Manufacture, Quality of Life, Robotics, Robots},
pubstate = {published},
tppubtype = {conference}
}

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Paulraj, Smily Jesu Priya Victor; Karim, Ruwinah Abdul; Vetrayan, Jayachandran

Evaluation of Occupational Performance Imitation Intervention on Three Imitation Learnings among Autism: Case series Inproceedings

Abbas, MY; Bajunid, AFI; Thani, SKM (Ed.): ASLI QOL2014: ANNUAL SERIAL LANDMARK INTERNATIONAL CONFERENCE ON QUALITY OF LIFE / AQOL 2014 ISTANBUL: ABRA INTERNATIONAL CONFERENCE ON QUALITY OF LIFE, pp. 58-66, Assoc Behav Res Asians ELSEVIER SCIENCE BV, SARA BURGERHARTSTRAAT 25, PO BOX 211, 1000 AE AMSTERDAM, NETHERLANDS, 2015, ISSN: 1877-0428, (Annual Serial Landmark International Conference on Quality of Life(ASLI QoL) / ABRA International Conference on Quality of Life (AQoL), Istanbul Tech Univ, Istanbul, TURKEY, DEC 26-28, 2014).

Abstract | Links | BibTeX | Tags: Autism, Imitation, Occupational Performance, Quality of Life

@inproceedings{ISI:000381109000006,
title = {Evaluation of Occupational Performance Imitation Intervention on Three
Imitation Learnings among Autism: Case series},
author = {Smily Jesu Priya Victor Paulraj and Ruwinah Abdul Karim and Jayachandran Vetrayan},
editor = {MY Abbas and AFI Bajunid and SKM Thani},
url = {https://pdf.sciencedirectassets.com/277811/1-s2.0-S1877042815X00401/1-s2.0-S1877042815048569/main.pdf?X-Amz-Security-Token=IQoJb3JpZ2luX2VjEBEaCXVzLWVhc3QtMSJHMEUCIQCT45AhC46wb5K4AVgakKIR5TJ%2FR3QfiUg%2BxmGvE24p9QIgKM8RFL3Fhc2jk%2BYr7N9CA9bB88LMOaKYsSJ%2BGQG7m5gqtAMIehADGgwwNTkwMDM1NDY4NjUiDA4JYpb01m4KsfBdwSqRAwh57gEoXQeWsyw0dn8qXWai5jGSt7xdEma3%2BLDfHdEVqcQQarsRRDJwekkvlAMmDKTWYDD1MwdfxP5FNBDMg%2FSyzPvjPYtOK1YZPO6X92mDDRMn7xybdk8AhJgn929E9bqMFdmB255fLZr6h8mDY0O6aFbeL%2FyK7cBDG2cV8iC%2FD6ZORt8FRlQxjDcFu4JyYRzOwuIq6P5UThze4AbR3uD3GtzWg%2BN4f0lnrwbZjw0meTOx6W1BshOkts61Wj2qUbUwfM00bVryB1YWU7U0Fh8RY1s1CLjDqtI1LGKEOYvTKOp%2FjyCUAW3BpV%2BFK%2Brl3t4QCrnthPbnBergoUlQml2%2B9e%2Bc4Bs%2FCfsfWIk0frivZXyIuR6e9T2AXUI%2B09edNuafx1gFDad2NA6eTb%2Blude3n1EgHmU1aakaSa49WWuYXLwPLIR50MHulVrWZy%2FB4IrUrQ0hiPXJNhsYzTD6M75MfK2pM4XRzNc9Z6SrZ7fsBzIjH7gTdSu3Ec7O%2FpC3HrQ07cNmcf1dSXs5DBH4qlxVMK6h3%2FYFOusBdLx3F9AvX6gpQSXTjCoMtoE%2Ba0qcIIl2uF3haxkEVvKSFm3CKF9pDEveUpxy5gW9SHPMVRwmwNQr3SmC9WKjHgax2bzln24ejfQOP0LQcM7n590D8FBqENpFIpuRC%2BYpjsQyfaHlB7oTLT9LSSZhOiY3DSxIjmvM8iIzzz8L1OVMMEJAdvKI6rFHE0Myz7uCNk05ooyCxHlRmcASGiPe8JTWwh%2BSRPLToK53NuqKe032xN6wZ5Bc3dA2ZTqkiMdzG4F9BRnnXBgO39Qu3Ttd6Flr2rx%2BtrVZY3DIUnwY6KN0%2FRAgsipiXYoDbA%3D%3D&X-Amz-Algorithm=AWS4-HMAC-SHA256&X-Amz-Date=20200603T165358Z&X-Amz-SignedHeaders=host&X-Amz-Expires=300&X-Amz-Credential=ASIAQ3PHCVTY5M5EXXNE%2F20200603%2Fus-east-1%2Fs3%2Faws4_request&X-Amz-Signature=98aab5a16290d99ce43d8c8bd4b7aad29601cc238a58deada38281559a5358d4&hash=33223d6b9ba0203786d34003e9f3ce41ee389e77a4003bcbb3491226aa897e72&host=68042c943591013ac2b2430a89b270f6af2c76d8dfd086a07176afe7c76c2c61&pii=S1877042815048569&tid=spdf-4c1b05d9-df08-47e9-867c-eb352439e80d&sid=30b890444e784240913915d465b2191c75a7gxrqb&type=client},
doi = {10.1016/j.sbspro.2015.08.208},
issn = {1877-0428},
year = {2015},
date = {2015-01-01},
booktitle = {ASLI QOL2014: ANNUAL SERIAL LANDMARK INTERNATIONAL CONFERENCE ON QUALITY
OF LIFE / AQOL 2014 ISTANBUL: ABRA INTERNATIONAL CONFERENCE ON QUALITY
OF LIFE},
volume = {202},
pages = {58-66},
publisher = {ELSEVIER SCIENCE BV},
address = {SARA BURGERHARTSTRAAT 25, PO BOX 211, 1000 AE AMSTERDAM, NETHERLANDS},
organization = {Assoc Behav Res Asians},
series = {Procedia Social and Behavioral Sciences},
abstract = {This study determined the effect of Occupational Performance Imitation
Intervention (OPII) on three imitation learning among autism using a
case series design. Six children with autism participated in this study
with aged between four to six and half years. These children randomly
divided into three groups. In each group received different types of
stimulation, which included visual imitation, auditory imitation and
visuoauditory imitation. Total 15 weeks of a programme conducted with
one week of a pre-test, ten weeks of intervention and follow-up
conducted after three weeks of post intervention. The finding indicates
all three groups showed improvements in after received OPII. In future
need to examine the well-designed study with larger sample size. (C)
2015 The Authors. Published by Elsevier Ltd.},
note = {Annual Serial Landmark International Conference on Quality of Life(ASLI
QoL) / ABRA International Conference on Quality of Life (AQoL), Istanbul
Tech Univ, Istanbul, TURKEY, DEC 26-28, 2014},
keywords = {Autism, Imitation, Occupational Performance, Quality of Life},
pubstate = {published},
tppubtype = {inproceedings}
}

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Siah, P -C; Tan, S -H

Sense of coherence and WHOQoL among parents of children with ASD in Malaysia Journal Article

International Journal on Disability and Human Development, 14 (1), pp. 59-66, 2015, ISSN: 21911231, (cited By 2).

Abstract | Links | BibTeX | Tags: Adult, Age, Article, Autism, Children, Comprehension, Education, Employment, Environmental Factor, Female, Gender, Han Chinese, Health, Housewife, Human, Income, Indian, Major Clinical Study, Malay, Malaysia, Male, Marriage, Mental Health, Parental Attitude, Pensioner, Psychological Aspect, Quality of Life, Religion, Sampling, Sense of Coherence, Social Interactions

@article{Siah201559,
title = {Sense of coherence and WHOQoL among parents of children with ASD in Malaysia},
author = {P -C Siah and S -H Tan},
url = {https://www.scopus.com/inward/record.uri?eid=2-s2.0-84922567900&doi=10.1515%2fijdhd-2013-0039&partnerID=40&md5=a909c24c26550aebe2c8922063d70001},
doi = {10.1515/ijdhd-2013-0039},
issn = {21911231},
year = {2015},
date = {2015-01-01},
journal = {International Journal on Disability and Human Development},
volume = {14},
number = {1},
pages = {59-66},
publisher = {Walter de Gruyter GmbH},
abstract = {Studies have shown that most parents of children with autism spectrum disorder (ASD) face more stress and have a poorer quality of life (QoL) than other parents. Nonetheless, there are still some parents of children with ASD who are able to maintain or even improve their QoL. This study is aimed to explore the relationship between SoC and WHOQoL among parents of children with ASD. Method: A total of 96 parents of children with ASD were invited to participate using a purposive sampling method. Results: The results suggested that participants in the high SoC group had better QoL in the four domains than those in the low SoC group. More importantly, not all types of SoC were relevant to QoL. Comprehensibility was relevant to all the four QoL domains and manageability was relevant to physical and psychological health, while meaningfulness was not relevant to any of the QoL domains. Conclusions: NGOs may improve the QoL of these parents by providing trainings to improve their SOC, especially in comprehensibility and manageability. © 2015 by De Gruyter.},
note = {cited By 2},
keywords = {Adult, Age, Article, Autism, Children, Comprehension, Education, Employment, Environmental Factor, Female, Gender, Han Chinese, Health, Housewife, Human, Income, Indian, Major Clinical Study, Malay, Malaysia, Male, Marriage, Mental Health, Parental Attitude, Pensioner, Psychological Aspect, Quality of Life, Religion, Sampling, Sense of Coherence, Social Interactions},
pubstate = {published},
tppubtype = {article}
}

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Banire, B; Jomhari, N; Ahmad, R

Visual Hybrid Development Learning System (VHDLS) Framework for Children with Autism Journal Article

Journal of Autism and Developmental Disorders, 45 (10), pp. 3069-3084, 2015, ISSN: 01623257, (cited By 7).

Abstract | Links | BibTeX | Tags: Article, Attention, Autism, Autism Spectrum Disorders, Children, Computer Interface, Education, Education of Intellectually Disabled, Educational Model, Feedback System, Female, Human, Learning, Male, Models, Occupational Therapist, Preschool, Preschool Child, Priority Journal, Procedures, Psychology, Quality of Life, Treatment Duration, User Interfaces, Visual Hybrid Development Learning System, Visual Stimulation

Clark, M; Brown, R; Karrapaya, R

An initial look at the quality of life of Malaysian families that include children with disabilities Journal Article

Journal of Intellectual Disability Research, 56 (1), pp. 45-60, 2012, ISSN: 09642633, (cited By 16).

Abstract | Links | BibTeX | Tags: Adolescent, Adult, Article, Autism, Caregiver, Cerebral Palsy, Children, Cost of Illness, Cross-Cultural Comparison, Developmental Disabilities, Developmental Disorders, Disabled Children, Down Syndrome, Family, Family Health, Female, Health Care, Health Care Delivery, Health Survey, Human, Intellectual Disability, Intellectual Impairment, Life Satisfaction, Malaysia, Male, Parents, Policy, Preschool, Preschool Child, Psychometrics, Quality of Life, Questionnaires, School Child, Social Support, Socioeconomic Factors

@article{Clark201245,
title = {An initial look at the quality of life of Malaysian families that include children with disabilities},
author = {M Clark and R Brown and R Karrapaya},
url = {https://www.scopus.com/inward/record.uri?eid=2-s2.0-83855165819&doi=10.1111%2fj.1365-2788.2011.01408.x&partnerID=40&md5=4822406179501d1b0b93c5374e383637},
doi = {10.1111/j.1365-2788.2011.01408.x},
issn = {09642633},
year = {2012},
date = {2012-01-01},
journal = {Journal of Intellectual Disability Research},
volume = {56},
number = {1},
pages = {45-60},
abstract = {Background While there is a growing body of literature in the quality of life of families that include children with disabilities, the majority of research has been conducted in western countries. The present study provides an initial exploration of the quality of life of Malaysian families that include children with developmental/intellectual disabilities. Dynamics characterising Malaysian society are described as developments in social policy and service delivery that support persons with disabilities and their families. Method Questionnaire data were collected using the Family Quality of Life Survey - Short Version. Members of 52 families that included one or two children with disabilities were interviewed. Their responses provided their perceptions within six dimensions of family quality of life across the nine life domains assessed. Results Findings showed a consistent pattern of relatively strong perceived ímportance' ratings in each of life domains as compared to mean ratings for other family quality of life dimensions. Some dimensions of family quality of life, in particular ópportunities', ínitiative' and áttainment', demonstrated particularly strong associations with each other. Overall means of satisfaction with and attainment of family quality of life as well as global evaluations of quality of life and satisfaction all demonstrated significant associations, although each of these correlations accounted for less than 50% of the common variance. Conclusions The importance rating can be viewed as a determining factor in terms of quality of life, and it played a critical role in supporting attainment of, and satisfaction with, family quality of life, assuming opportunities, initiative and stability are adequate. The need for a broader sample including families that were not receiving services was noted. Future research questions based on the results of the current study and some of the dynamics impacting Malaysian society are also suggested. © 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd.},
note = {cited By 16},
keywords = {Adolescent, Adult, Article, Autism, Caregiver, Cerebral Palsy, Children, Cost of Illness, Cross-Cultural Comparison, Developmental Disabilities, Developmental Disorders, Disabled Children, Down Syndrome, Family, Family Health, Female, Health Care, Health Care Delivery, Health Survey, Human, Intellectual Disability, Intellectual Impairment, Life Satisfaction, Malaysia, Male, Parents, Policy, Preschool, Preschool Child, Psychometrics, Quality of Life, Questionnaires, School Child, Social Support, Socioeconomic Factors},
pubstate = {published},
tppubtype = {article}
}

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Background While there is a growing body of literature in the quality of life of families that include children with disabilities, the majority of research has been conducted in western countries. The present study provides an initial exploration of the quality of life of Malaysian families that include children with developmental/intellectual disabilities. Dynamics characterising Malaysian society are described as developments in social policy and service delivery that support persons with disabilities and their families. Method Questionnaire data were collected using the Family Quality of Life Survey - Short Version. Members of 52 families that included one or two children with disabilities were interviewed. Their responses provided their perceptions within six dimensions of family quality of life across the nine life domains assessed. Results Findings showed a consistent pattern of relatively strong perceived ímportance' ratings in each of life domains as compared to mean ratings for other family quality of life dimensions. Some dimensions of family quality of life, in particular ópportunities', ínitiative' and áttainment', demonstrated particularly strong associations with each other. Overall means of satisfaction with and attainment of family quality of life as well as global evaluations of quality of life and satisfaction all demonstrated significant associations, although each of these correlations accounted for less than 50% of the common variance. Conclusions The importance rating can be viewed as a determining factor in terms of quality of life, and it played a critical role in supporting attainment of, and satisfaction with, family quality of life, assuming opportunities, initiative and stability are adequate. The need for a broader sample including families that were not receiving services was noted. Future research questions based on the results of the current study and some of the dynamics impacting Malaysian society are also suggested. © 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd.

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