@article{Adib2019,
title = {Predictors of caregivers’ satisfaction with the management of children with autism spectrum disorder: A study at multiple levels of health care},
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-s2.0-85066861959&doi=10.3390%2fijerph16101684&partnerID=40&md5=7f7b4ccd7484a6dcc6e2f03375b1ffb7},
doi = {10.3390/ijerph16101684},
issn = {16617827},
year = {2019},
date = {2019-01-01},
journal = {International Journal of Environmental Research and Public Health},
volume = {16},
number = {10},
publisher = {MDPI AG},
abstract = {Background: Caregivers are the initial gatekeepers in the health care management of children with autism spectrum disorder (ASD). Methods: This cross-sectional study aimed to determine the factors associated with caregivers’ satisfaction with different levels of health care services in managing children with ASD in Kelantan. The satisfaction scores of 227 main caregivers of confirmed ASD children were assessed with a modified Parent Satisfaction Scale (PSS) questionnaire. Results: The analysis showed that caregivers who waited longer for a doctor’s consultation in primary care had a reduced PSS score, whereas caregivers who were satisfied with the waiting time in primary care had higher PSS scores. At the secondary care level, caregivers who possessed at least a diploma had reduced PSS scores, whereas caregivers who were satisfied with both doctors’ consultation times and occupational therapy appointments had higher PSS scores. At the tertiary care level, caregivers with an underlying medical problem and who had children undergoing occupational therapy for two months or more had reduced PSS scores. Nevertheless, the analysis showed that caregivers who were concerned with their children’s sleeping problems, who had been informed about parental support, who were satisfied with speech and occupational therapy appointments, who were satisfied with waiting times at tertiary care clinics, and who were satisfied with their doctor’s knowledge and experience had higher PSS scores. Conclusions: This study elucidated the importance of understanding caregivers’ satisfaction in attaining care for their ASD children and highlighted the need to promote factors that would increase caregivers’ satisfaction with current ASD services. © 2019 by the authors. Licensee MDPI, Basel, Switzerland.},
note = {cited By 0},
keywords = {Adult, Article, Autism, Autism Spectrum Disorders, Caregiver, Child Care, Children, Comorbidity, Consultation, Controlled Study, Cross-Sectional Study, Female, Health Care, Health Care Delivery, Health Care System, Health Service, Health Worker, Human, Job Satisfaction, Kelantan, Major Clinical Study, Malaysia, Male, Management, Mental Health, Middle Aged, Occupational Therapy, Parent Satisfaction Scale Questionnaire, Perception, Personal Satisfaction, Primary Health Care, Primary Medical Care, Psychology, Questionnaires, Satisfaction, Secondary Health Care, Speech Therapy, Surveys, Tertiary Health Care, West Malaysia},
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{Adib2018,
title = {Translation and validation of the malay version of the parents’ satisfaction scale (Pss-m) for assessment of caregivers’ satisfaction with health care services for children with autism spectrum disorder},
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 Arifin},
url = {https://www.scopus.com/inward/record.uri?eid=2-s2.0-85056090545&doi=10.3390%2fijerph15112455&partnerID=40&md5=53650806d46343cc3e95c9b30442f79c},
doi = {10.3390/ijerph15112455},
issn = {16617827},
year = {2018},
date = {2018-01-01},
journal = {International Journal of Environmental Research and Public Health},
volume = {15},
number = {11},
publisher = {MDPI AG},
abstract = {Background: A Malay version of Parent Satisfaction Scale (PSS-M) is needed to investigate the factors contributing to the Malay caregivers’ satisfaction with health care management for children with autism spectrum disorder (ASD). The aim of the study is to translate and validate the questionnaire to assess the caregivers’ satisfaction on health care services. Methods: A cross-sectional study was conducted among 110 caregivers of children with ASD aged between 2 and 17 years old that received treatment at two tertiary care centres in Kelantan. Permission to use the original version of the PSS questionnaire was obtained. The original English version of the PSS was translated into a Malay version following the 10 steps proposed by an established guideline. Pre-testing of the PSS was carried out with 30 caregivers before confirmatory factor analysis (CFA) was established using 110 caregivers. They were asked to assess their understanding of the questionnaire. The one-dimensional questionnaire consists of 11 items, including staff attitudes, availability of staff, supportiveness, and helpfulness. The 5-point Likert scale provided ratings from 1 (strongly disagree) to 5 (strongly agree). Confirmatory factor analysis was performed using a robust maximum likelihood estimator. Results: The analysis showed model fit data with good reliability. Conclusion: The PSS-M shows overall model fitness based on specific indices, with good construct validity and excellent absolute reliability to determine the satisfaction level of caregivers of children with ASD with respect to health care services. © 2018, MDPI AG. All rights reserved.},
note = {cited By 2},
keywords = {Adult, Article, Autism, Autism Spectrum Disorders, Caregiver, Child Care, Child Parent Relation, Children, Cross-Sectional Study, Factor Analysis, Female, Guideline, Health Personnel Attitude, Health Service, Health Worker, Human, Kelantan, Likelihood Functions, Likert Scale, Malaysia, Male, Maximum Likelihood Analysis, Mental Health, Mental Health Service, Parents, Parents Satisfaction Scale Malay Version, Personal Satisfaction, Practice Guideline, Psychological Rating Scale, Psychology, Publication, Questionnaires, Reproducibility, Reproducibility of Results, Satisfaction, Statistical Model, Statistics, Surveys, Tertiary Care Center, Translations, Validation Study, West Malaysia},
pubstate = {published},
tppubtype = {article}
}

@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}
}