@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}
}

@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}
}

@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}
}