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  1. Isa SN, Ishak I, Ab Rahman A, Mohd Saat NZ, Che Din N, Lubis SH, et al.
    Asian J Psychiatr, 2016 Oct;23:71-77.
    PMID: 27969083 DOI: 10.1016/j.ajp.2016.07.007
    Families caring for children with disabilities face particular challenges and demands compared to those caring for children without disabilities. Evidence suggests that there is considerable variation in how caregivers of children with disabilities adapt to their caregiving demands and stressors. The different adaptations to the children with disabilities may cause different impacts on the health and well-being of caregivers. This paper provides a brief overview of the literature on the impact of caring for children with disabilities on the health and quality of life of caregivers and the factors related to the health outcomes and quality of life. A literature search was conducted by using various electronic databases, including PsychINFO, ScienceDirect, ProQuest, and MEDLINE using specific key terms. Thirty-one articles published in peer-review journals from the last six years (2009-2014) were reviewed. Most of the studies were quantitative studies. Factors discussed that impact on caregivers' health and quality of life include the caregivers' sociodemographic background and child's disability-related factors. Several mediators and moderators including coping strategies, social support, parental stress, self-esteem and self-efficacy are described in this paper. This review highlighted the importance of these factors to better understand the complex nature of stress processes and the caregivers' adaptations to their children's disabilities.
    Matched MeSH terms: Disabled Children*
  2. Fabillah NSA, Mustapa N, Rohani MM, Esa R
    Ann Dent, 2015;22(1):15-20.
    MyJurnal
    Oral health literacy (OHL) is important in empowering people to improve their general and oral health. Carers’ OHL may be associated with their ability to deliver good oral healthcare to their children. The aim of this pilot study was to assess the OHL among carers of special needs children. This is a descriptive cross-sectional study of carers in four Community-Based Rehabilitation Centre. Data were collected through a structured face-to-face interview of 40 carers. Oral Health Literacy Malay Version (OHLI-M) was measured using text passages and prompts with a total of 57 items. These items were used to assess comprehension and numerical ability of carers based on domains namely, accessing dental care, understand appointment and following medication instructions. The results showed that majority of the participants had ‘marginal’ and ‘adequate’ OHL level of 32.5% and 52.5%, respectively. Only four (10%) participants had ‘inadequate’ OHL level. The ‘reading comprehension’ and ‘numeracy’ sections’ mean scores were 37.54 (95% CI 35.7-39.4) and 38.17 (95% CI 34.8-41.6). The total OHL mean score was 75.7 (95% CI 71.2-80.2). In conclusion, majority of the carers of special needs children in this sample had moderate OHL. Such information is important to develop more appropriate intervention programmes for carers to match their OHL.
    Matched MeSH terms: Disabled Children
  3. Rahman AA, Mohamad N, Imran MK, Ibrahim WP, Othman A, Aziz AA, et al.
    Malays J Med Sci, 2011 Oct;18(4):63-8.
    PMID: 22589674 MyJurnal
    No previous study has assessed the impact of childhood disability on parents and family in the context of Malaysia, and no instrument to measure this impact has previously been available. The objective of this cross-sectional study was to determine the reliability of a Malay version of the PedsQL™ Family Impact Module that measures the impact of children with disabilities (CWD) on their parents and family in a Malaysian context.
    Matched MeSH terms: Disabled Children
  4. Baharudin NS, Harun D, Kadar M
    Malays J Med Sci, 2020 Mar;27(2):21-36.
    PMID: 32788838 MyJurnal DOI: 10.21315/mjms2020.27.2.3
    Various standardised assessment tools have been used to evaluate children with disabilities. However, assessment tools that provide information on the movement and function of children with specific learning disabilities (SLD) are still limited. This article provides a narrative review of the characteristics of five movement and/or function assessment tools. The strengths and limitations of the tools will be highlighted. Empirical studies on the assessment tools used are reviewed based on three criteria: (i) standardised tools; (ii) assessment of movement and/or function; (iii) applicability to children with SLD ranging from 4-17 years of age and widely used in practice. The following instruments have been included as they have been found to fulfil the criteria: (i) the Bruininks-Oseretsky test of motor proficiency-2 (BOT-2); (ii) the movement assessment battery for children-2 (MABC-2); (iii) the pediatric balance scale (PBS); (iv) the Vineland adaptive behaviour scale-II (VABS-II) and (v) the pediatric evaluation of disability inventory-computerised adaptive test (PEDI-CAT). The article presents the characteristics, strengths and limitations of five standardised assessment tools that are currently in use, which measure the movement and/or function of children with SLD. This article concludes with a discussion of recommendations for the best approaches to evaluating the movement and functional abilities of children with SLD.
    Matched MeSH terms: Disabled Children
  5. Sukeri S, Bakar RS, Othman A, Ibrahim MI
    J Taibah Univ Med Sci, 2017 Oct;12(5):424-429.
    PMID: 31435274 DOI: 10.1016/j.jtumed.2017.05.002
    Objectives: The present study aimed to determine the barriers that deter mothers of children with disabilities from attaining their unmet needs.

    Methods: In-depth interviews of 12 mothers of children with disabilities were conducted from November 2014 to January 2015 in Kelantan, Malaysia. The mothers were recruited by purposive sampling. Thematic analysis was used for identifying, analysing and reporting the data.

    Results: Barriers to the unmet needs among mothers of children with disabilities were found to stem from the mothers' expectation and further propagated by lack of support, the role of healthcare professionals in providing care, inappropriate policies and shortage of resources required for survival and maintaining care.

    Conclusions: Identification of the barriers to the attainment of unmet needs among mothers of disabled children is crucial for resolving the issue of unmet needs. Deeper understanding of these barriers may facilitate positive actions toward addressing the needs of these mothers and to alleviate the stress on mothers of disabled children. A concerted effort to coordinate services across all disciplines is required to dismantle these barriers by improving the provision of health care delivery and evaluation of welfare policies and services.
    Matched MeSH terms: Disabled Children
  6. Tan SH
    Disabil Health J, 2015 Jul;8(3):414-23.
    PMID: 25595295 DOI: 10.1016/j.dhjo.2014.11.003
    BACKGROUND: Planning and evaluation of health care services for children with disabilities requires information on their caregivers' needs.
    OBJECTIVE: This paper aims to present the development and psychometric properties of the Caregiver Needs Scale (CNS), a scale assessing the needs of caregivers of children with disabilities aged 0-12 years in Malaysia.
    METHODS: Development of the scale went through a multistage process of literature review, modification of an existing instrument, input from experts and feedback from service users. Literature review identified content domains and response options. An exploratory factor analysis (EFA) was undertaken to identify subscales of caregiver needs. The internal consistency reliability, convergent validity and discriminant validity of the new scale were examined.
    RESULTS: 273 caregivers of children with disabilities completed the fielded questionnaire. EFA revealed 4 subscales of caregiver needs: need for 'Help getting information and services for the child,' 'Help coping with the child,' 'Help getting child care' and 'Help with finances.' Three items with factor loading <0.4 were dropped. Cronbach's alpha coefficients of the subscales ranged from 0.813 to 0.903. Total CNS score correlated with number of child's needs and unmet needs. The score was also higher in families with financial and employment problems.
    CONCLUSION: A new instrument was developed to assess the needs of caregivers of children with disabilities for use in the Malaysian population. The CNS showed satisfactory psychometric properties but further examination is warranted to confirm its validity.
    KEYWORDS: Caregivers; Children with disabilities; Instrument development; Needs assessment; Psychometric properties
    Matched MeSH terms: Disabled Children*
  7. Isa SN, Aziz AA, Rahman AA, Ibrahim MI, Ibrahim WP, Mohamad N, et al.
    J Dev Behav Pediatr, 2013 May;34(4):262-8.
    PMID: 23538932 DOI: 10.1097/DBP.0b013e318287cdfe
    Caring for children with disabilities brings about a significant impact on the parents and families. The purposes of this study were to determine the impact of having children with disabilities on parents' health-related quality of life (HRQOL), family functioning, and total family impact and to identify the associated factors.
    Matched MeSH terms: Disabled Children/psychology*
  8. Khoo TB, Kassim AB, Omar MA, Hasnan N, Amin RM, Omar Z, et al.
    Disabil Rehabil, 2009;31(21):1753-61.
    PMID: 19479558 DOI: 10.1080/09638280902751964
    To determine the magnitude and impact of physical disability on Malaysian school-aged children between 7 and less than 18 years old.
    Matched MeSH terms: Disabled Children/statistics & numerical data*
  9. Tan SH
    Health Soc Care Community, 2017 03;25(2):447-457.
    PMID: 26833929 DOI: 10.1111/hsc.12325
    Disability in a child not only affects the child but also presents socioeconomic and psychological impacts to the child's family. This study aims to describe the service needs of caregivers of children with disabilities in the state of Penang, Malaysia, and to determine the child and family characteristics predisposing to having more caregiver needs. A cross-sectional survey was conducted between February and June 2013 among caregivers of children aged 0-12 years with disabilities registered with the Penang Department of Social Welfare. Caregivers completed a self-administered mailed questionnaire containing a 20-item Caregiver Needs Scale (CNS). Each item in the CNS was rated on a 5-point Likert scale ranging from 'help not at all needed' to 'help extremely needed'. A total of 273 surveys were available for analysis (response rate 34.0%). The CNS contained four domains. The 'Help getting Information and Services for child' domain had the highest mean score (3.61, 95% CI: 3.46, 3.77) followed by 'Help with Finances' (3.29, 95% CI: 3.13, 3.45) and 'Help Coping with child' (3.11, 95% CI: 2.97, 3.25), while the 'Help getting Childcare' domain had the lowest mean score (2.30, 95% CI: 2.13, 2.47). Multivariate regression analysis identified caregivers of younger children and with more severe disability as having more caregiver needs in all domains. Besides that, caregivers of children with learning disability needed more help getting information and help with coping. Caregivers of children with learning and multiple disabilities needed more help getting childcare compared to children with other disability. Caregivers of Indian ethnicity, who had less than a tertiary education and who themselves had medical problems needed more help with finances. The findings on caregiver needs in this study can help inform planning of family support services for children with disabilities in Penang, Malaysia.
    Matched MeSH terms: Disabled Children/statistics & numerical data*
  10. Joginder Singh S, Iacono T, Gray KM
    Int J Speech Lang Pathol, 2011 Oct;13(5):389-98.
    PMID: 21888557 DOI: 10.3109/17549507.2011.603429
    The aim of this study was to explore the assessment, intervention, and family-centred practices of Malaysian and Australian speech-language pathologists (SLPs) when working with children with developmental disabilities who are pre-symbolic. A questionnaire was developed for the study, which was completed by 65 SLPs from Malaysia and 157 SLPs from Australia. Data reduction techniques were used prior to comparison of responses across questionnaire items. Results indicated that SLPs relied mostly on informal assessments. Malaysian and Australian SLPs differed significantly in terms of obtaining information from outside the clinic to inform assessment. When providing intervention, SLPs focused mostly on improving children's pre-verbal skills. A third of Australian SLPs listed the introduction of some form of symbolic communication as an early intervention goal, compared to only a small percentage of Malaysian SLPs. Regarding family involvement, SLPs most often involved mothers, with fathers and siblings being involved to a lesser extent. Overall, it appeared that practices of Malaysian SLPs had been influenced by developments in research, although there were some areas of service delivery that continued to rely on traditional models. Factors leading to similarities and differences in practice of SLPs from both countries as well as clinical and research implications of the study are discussed.
    Matched MeSH terms: Disabled Children/psychology; Disabled Children/rehabilitation*
  11. Nyi, Nyi Naing, Zabidi Azhar Mohd Hussin, Nawaz Hussin, Menaga, M., Aw Linda, Raihan, S., et al.
    MyJurnal
    A sample of 204 handicapped children below 12 years of age consisting of 121(59.3%) males and 83 (40.7%) females who were classified into various types of mental and physical handicaps, were surveyed in April and May 1996. The majority of those with mental handicaps were Down Syndrome while those with cerebral palsy were the mostfrequent cause of physical handicaps. A structured questionnaire was used for interviewing the children parents to evaluate their attitude towards their handicapped children. The majority of the parents expressed their opinions that having handicapped children was not a burden to them although these children had to be given more attention. However, a significant minority felt that the child would be afinancial burden to the family and that he/she would restrict the social life of the family. The majority of the children were sent to school, as parents felt it was their duty to do so. For those children not attending school, the majority of parents felt that the children would not benefit by going. The others could not do so because offinancial constraints or because of the distance between home and school. For these children, provid-ing hostel facilities in a boarding school could be the answer. This study shows that parental love and support plays a major role in ensuring optimal growth and development of a handicapped child
    Matched MeSH terms: Disabled Children
  12. Suriati, S., Sharifah Zainiyah, S.Y., Lye, M.S., Norlijah, O.
    MyJurnal
    Caregivers may experience the need for information, social support, a range of services and financial support in caring for children with disabilities. However, some of these needs are unmet. This study aims to determine the perceived unmet needs among caregivers of children with disabilities at the Community-based Rehabilitation centre (CBR). A cross-sectional study was carried out among a total of 337 caregivers, who were recruited from 12 CBR centres in Selangor. The unmet needs were assessed using Family Needs Survey (FNS) questionnaire, which included six subscales of needs such as need for information, social support, community services, explaining to others, financial support and family functioning. Caregivers identified the need for information that the child might receive in the future as their greatest need (94.4%) and the least was the need for getting more counseling or help in getting a job (16.3%). The mean score for the overall unmet needs was 18.67 (SD=7.623). Out of six subscales of FNS, the need for information had the highest rating which was 98.3%, followed by need for social support (93.4%), need for community services (84.0%), need for financial support (79.9%), need for family functioning (61.8%) and need for explaining to others (46.2%). The unmet needs varied within the subscales. Therefore, more effective intervention programs are needed in community-based rehabilitation centres to match or reduce those varied unmet needs in order to allow caregivers to provide better care for their children with disabilities.
    Matched MeSH terms: Disabled Children
  13. Lineker T, Ferlis B, Nurul Hudani Mohd N
    Previous researchers have shown that parents of children with physical disabilities have a higher risk of mental health problems that may be caused by significant challenges in raising children with disabilities. This challenge is compounded by the difficulty of living in rural areas. This study aimed to identify whether parents of children with physical disabilities experience Mixed Anxiety and Depression (MAD) and build a deep understanding of "why" parents experienced MAD. Material for this case study was obtained using the Kessler psychological stress scale (K-10) and in-depth interviews. Six parents who have MAD has been interviewed. Inductive content analysis with the help of computer program ATLAS.ti 7 has produced six symptoms of MAD among parents (sleep disturbance, irritable, anxious, easy crying, expecting something worse will happen, hopeless about the future) and five sources of MAD (lack of support, acceptance problems, lack of information and experience, the rural factor, child health problem). It can be concluded, this finding relates to the challenges faced by parents in raising children with physical disabilities in rural Sabah.
    Matched MeSH terms: Disabled Children
  14. Ismail A, Campbell MJ, Ibrahim HM, Jones GL
    PMID: 16813662
    Health Related Quality of Life (HRQoL) studies on children with chronic illness such as thalassaemia are limited. We conducted the first study to investigate if children with thalassaemia have a lower quality of life in the four dimensions as measured using the PedsQL 4.0 generic Scale Score: physical, emotional, social and role (school) functioning compared to the healthy controls allowing for age, gender, ethnicity and household income.
    Matched MeSH terms: Disabled Children/psychology*
  15. Clark M, Brown R, Karrapaya R
    J Intellect Disabil Res, 2012 Jan;56(1):45-60.
    PMID: 21435066 DOI: 10.1111/j.1365-2788.2011.01408.x
    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.
    Matched MeSH terms: Disabled Children/statistics & numerical data*
  16. Al-Abed A. Al-Abed, Rosnah Sutan, Sami A.R. Al - Dubai, Yassin Ibrahim, Syed M. Aljunid
    MyJurnal
    Falls are the most common injury causing death or long term disability particularly among children. This study aimed to identify the risk factors of the unintentional injuries due to falls in children aged less than five years in Yemen. This cross sectional study enrolled a total of 439 children under five years old from the emergency department of 6 hospitals in Sana'a city. Multistage sampling was used to select six hospitals from public and private sectors in Sana'a city. Face to face interviews were conducted by using a structured questionnaire. Simple logistic regression and multiple logistic regression were used in the analysis. The prevalence of falls among children under five years old was 21.2%. In the multivariate analysis, factors associated with falls among children were young mother (aOR= 0.9, 95% CI 0.81-0.91), working of mother (aOR= 4.5 95% CI 2.40-7.65), frequent family social gatherings (aOR= 2.7, 95% CI 1.54-4.61), number of children at home (aOR= 2.6, 95% CI 1.43-4.64), chewing khat by father (aOR= 2.4, 95% CI 1.38-4.10), presence of staircase in the house (aOR= 2.1, 95% CI 1.24-3.70), number of rooms at home (aOR= 2.2, 95% CI 1.17-3.99) and disabled children (aOR= 3.3, 95% CI 1.20-9.27). In the study, socio-economic and cultural factors such as family gathering and chewing khat were associated with home fall injury among children under 5 years old in Yemen. Health promotion program should take place to reduce the occurrence of fall injury.
    Matched MeSH terms: Disabled Children
  17. Hasan H, Abdul Aziz AF, Aljunid SM
    Health Soc Care Community, 2021 Jan;29(1):215-226.
    PMID: 33189086 DOI: 10.1111/hsc.13084
    The Community-Based Rehabilitation (CBR) services under the Malaysian Ministry of Women, Family and Community Development have provided two types of services for disabled children: centre-based and home-based care since 1984. A cross-sectional study was conducted among parents and caregivers with children receiving treatment at CBRs on the east coast of Peninsular Malaysia, to determine the level of satisfaction with the services provided. Respondents were recruited via multi-staged sampling, and simple randomisation at CBR level. Respondents self-administered the Physical Therapy Satisfaction Questionnaire (PTSQ) and provided sociodemographic data. A total of 297 respondents were recruited and all the questionnaires were returned complete, making the response rate 100%. Total satisfaction scores and factors influencing respondents' satisfaction for both groups were analysed. The mean total satisfaction score for centre-based and home-based were 84.69 (SD = 10.01) and 75.30 (SD = 12.23; t = 7.160, p ≤ .001) respectively. Ninety-eight per cent of centre-based and 89% of home-based respondents were satisfied with the current services. There were significantly mean differences in the satisfaction level of respondents of different states respectively (Kelantan mean 84.92 10.83, Terengganu mean 77.49 11.16 and Pahang mean 77.47 12.93, p ≤ .001). Factors associated with satisfaction were education (p = .002), occupation (p = <0.001), monthly income (p = .001) and source of income (p = .001). In conclusion, majority of parents and caregivers were satisfied with current services provided at CBR and satisfaction with services was dependent on CBR centre location and education and financial earning capacity.
    Matched MeSH terms: Disabled Children
  18. Global Burden of Disease Child and Adolescent Health Collaboration, Kassebaum N, Kyu HH, Zoeckler L, Olsen HE, Thomas K, et al.
    JAMA Pediatr, 2017 06 01;171(6):573-592.
    PMID: 28384795 DOI: 10.1001/jamapediatrics.2017.0250
    Importance: Comprehensive and timely monitoring of disease burden in all age groups, including children and adolescents, is essential for improving population health.

    Objective: To quantify and describe levels and trends of mortality and nonfatal health outcomes among children and adolescents from 1990 to 2015 to provide a framework for policy discussion.

    Evidence Review: Cause-specific mortality and nonfatal health outcomes were analyzed for 195 countries and territories by age group, sex, and year from 1990 to 2015 using standardized approaches for data processing and statistical modeling, with subsequent analysis of the findings to describe levels and trends across geography and time among children and adolescents 19 years or younger. A composite indicator of income, education, and fertility was developed (Socio-demographic Index [SDI]) for each geographic unit and year, which evaluates the historical association between SDI and health loss.

    Findings: Global child and adolescent mortality decreased from 14.18 million (95% uncertainty interval [UI], 14.09 million to 14.28 million) deaths in 1990 to 7.26 million (95% UI, 7.14 million to 7.39 million) deaths in 2015, but progress has been unevenly distributed. Countries with a lower SDI had a larger proportion of mortality burden (75%) in 2015 than was the case in 1990 (61%). Most deaths in 2015 occurred in South Asia and sub-Saharan Africa. Global trends were driven by reductions in mortality owing to infectious, nutritional, and neonatal disorders, which in the aggregate led to a relative increase in the importance of noncommunicable diseases and injuries in explaining global disease burden. The absolute burden of disability in children and adolescents increased 4.3% (95% UI, 3.1%-5.6%) from 1990 to 2015, with much of the increase owing to population growth and improved survival for children and adolescents to older ages. Other than infectious conditions, many top causes of disability are associated with long-term sequelae of conditions present at birth (eg, neonatal disorders, congenital birth defects, and hemoglobinopathies) and complications of a variety of infections and nutritional deficiencies. Anemia, developmental intellectual disability, hearing loss, epilepsy, and vision loss are important contributors to childhood disability that can arise from multiple causes. Maternal and reproductive health remains a key cause of disease burden in adolescent females, especially in lower-SDI countries. In low-SDI countries, mortality is the primary driver of health loss for children and adolescents, whereas disability predominates in higher-SDI locations; the specific pattern of epidemiological transition varies across diseases and injuries.

    Conclusions and Relevance: Consistent international attention and investment have led to sustained improvements in causes of health loss among children and adolescents in many countries, although progress has been uneven. The persistence of infectious diseases in some countries, coupled with ongoing epidemiologic transition to injuries and noncommunicable diseases, require all countries to carefully evaluate and implement appropriate strategies to maximize the health of their children and adolescents and for the international community to carefully consider which elements of child and adolescent health should be monitored.

    Matched MeSH terms: Disabled Children/statistics & numerical data
  19. Oei JL, Saugstad OD, Lui K, Wright IM, Smyth JP, Craven P, et al.
    Pediatrics, 2017 01;139(1).
    PMID: 28034908 DOI: 10.1542/peds.2016-1452
    BACKGROUND AND OBJECTIVES: Lower concentrations of oxygen (O2) (≤30%) are recommended for preterm resuscitation to avoid oxidative injury and cerebral ischemia. Effects on long-term outcomes are uncertain. We aimed to determine the effects of using room air (RA) or 100% O2 on the combined risk of death and disability at 2 years in infants <32 weeks' gestation.

    METHODS: A randomized, unmasked study designed to determine major disability and death at 2 years in infants <32 weeks' gestation after delivery room resuscitation was initiated with either RA or 100% O2 and which were adjusted to target pulse oximetry of 65% to 95% at 5 minutes and 85% to 95% until NICU admission.

    RESULTS: Of 6291 eligible patients, 292 were recruited and 287 (mean gestation: 28.9 weeks) were included in the analysis (RA: n = 144; 100% O2: n = 143). Recruitment ceased in June 2014, per the recommendations of the Data and Safety Monitoring Committee owing to loss of equipoise for the use of 100% O2. In non-prespecified analyses, infants <28 weeks who received RA resuscitation had higher hospital mortality (RA: 10 of 46 [22%]; than those given 100% O2: 3 of 54 [6%]; risk ratio: 3.9 [95% confidence interval: 1.1-13.4]; P = .01). Respiratory failure was the most common cause of death (n = 13).

    CONCLUSIONS: Using RA to initiate resuscitation was associated with an increased risk of death in infants <28 weeks' gestation. This study was not a prespecified analysis, and it was underpowered to address this post hoc hypothesis reliably. Additional data are needed.

    Matched MeSH terms: Disabled Children
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