Displaying publications 1 - 20 of 26 in total

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  1. Zamora MAL, Labao HC
    Enferm Clin, 2020 02;30 Suppl 1:120-123.
    PMID: 32115158 DOI: 10.1016/j.enfcli.2019.09.033
    The caregiver's role in rearing a child with disability requires huge physical demands which may lead to development of musculoskeletal disorders such as low back pain (LBP). This study aims to determine the factors associated with low back pain among caregivers of children with disability. A quantitative, correlational research design was used. Data were gathered among caregivers of children with disabilities enrolled in a specialized educational and pediatric rehabilitation unit in Valenzuela City. A personal information sheet was used to gather relevant demographic data while Oswestry Disability Index (ODI) was used to measure low back pain and disability. Pearson's correlation and Chi-square were used to determine the relationship and association among demographic factors and low back pain and disability. Majority of the respondents are mothers (59.09%) caring for children with autism spectrum disorder (31.82%), married (68.18%), and living in an extended family (36.36%). Chi-squared revealed a statistically significant association between caregivers' gender (p=0.003), relationship to child (p=0.000), and marital status (p=0.000) to low back pain and disability. Results imply that married mothers who are the primary caregivers to children with disability are prone to develop low back pain and disability. Preventive and restorative physical interventions, such as caring rotation, is recommended. Future studies should focus on other factors such as psychosocial, physical, and emotional aspects of low back pain and disability among caregivers of children with disability.
    Matched MeSH terms: Disabled Children*
  2. 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*
  3. 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*
  4. 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
  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. 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
  7. Olusanya BO, Gulati S, Berman BD, Hadders-Algra M, Williams AN, Smythe T, et al.
    Nat Med, 2023 May;29(5):1056-1060.
    PMID: 37055569 DOI: 10.1038/s41591-023-02291-x
    Matched MeSH terms: Disabled Children*
  8. 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
  9. 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
  10. Mohd Nordin NA, Hui Shan E, Zanudin A
    PMID: 31888294 DOI: 10.3390/ijerph16245145
    The overall care for children with cerebral palsy (CP) is challenging to the family which causes significant impacts to their livelihood. There is limited qualitative research that reports the unmet needs of parents with physically disabled children, especially highly dependent CP. The aim of this study was to explore the unmet needs of parents of highly dependent children with CP. A qualitative study using semi-structured face to face interviews was carried out among nine parents of children with CP with gross motor classification function score (GMFCS) levels III, IV, and V. The interviews were tape-recorded and transcribed verbatim. Transcribed data was analysed using thematic analysis method. Several unmet needs were highlighted by the parents; namely the needs in receiving information regarding CP conditions, getting psychological and financial support and explaining the child's condition to strangers. In addition, parents expressed the need for better support from the social welfare department, as well as in effectively organising family functioning. The findings of this study indicate that there is a need for the healthcare professionals to develop suitable strategies to assist the parents of highly dependent children with CP in fulfilling their specific needs. The role of relevant agencies should be optimised in addressing this area of concern.
    Matched MeSH terms: Disabled Children/psychology*
  11. 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
  12. 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*
  13. Khairul AY, Kannan TC, Erna FP
    Med J Malaysia, 2024 Mar;79(Suppl 1):59-66.
    PMID: 38555887
    INTRODUCTION: The prevalence of children with disabilities (CWD) is increasing. CWD requires exceptional long-term attention, which often falls on the caregivers. Caring for a CWD affects caregivers in multiple ways, such as physical, social, personal, and financial aspects. Most of the CWD will be cared in Community-Based Rehabilitation (CBR) centres where the caregivers have to play a crucial role as they become partners in the respective service delivery. However, there is still insufficient information on the impact (strain) of a disabled child on the caregivers in the CBR centre in the Kudat division of Sabah, Malaysia specifically. Hence, this study aims to explore the strains among caregivers of CWD at the CBR centre in the Kudat.

    MATERIALS AND METHODS: A cross-sectional study through a purposive sampling method was employed, involving 142 caregivers of CWD at the selected CBR centre. Four CBR centres were selected in this study, which were located in the Kudat division of Sabah. The Malay version of the Modified Caregiver Strain Index Questionnaire (M-CSI-M) was used in this study to obtain information about the caregiver's strain.

    RESULTS: Findings from this study revealed that most caregivers experienced moderate strain (72.5%). Some of the leading causes of their strain were upsetting CWD's behaviour (10.6%), financial strain (9.2%), and overwhelmed (9.2%). In addition, there were significant differences between caregiver strain and their level of education, income, and the types of their child's disabilities (p ≤ 0.05).

    CONCLUSION: The well-being of the caregivers may significantly impact the effectiveness of rehabilitation for CWD, as caregivers are vital interdisciplinary team members.

    Matched MeSH terms: Disabled Children*
  14. 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*
  15. Joginder Singh S, Diong ZZ, Mustaffa Kamal R
    Augment Altern Commun, 2020 06;36(2):107-117.
    PMID: 32706287 DOI: 10.1080/07434618.2020.1785547
    Teachers play an important role in the successful implementation of augmentative and alternative communication (AAC) for students with complex communication needs. The goal of this two-phase, mixed-methods study was to explore Malaysian teachers' use of, experience with, and perceptions about AAC. Phase 1 involved 252 teachers who completed a questionnaire that was aimed at collecting nationwide data about their use and overall perceptions of AAC. Phase 2 involved semi-structured interviews with 13 teachers who had experience supporting students who used AAC. Approximately half of the participants who completed the questionnaire knew about AAC and had used AAC with their students. Almost all of the participants had positive views of AAC though some misconceptions were reported. Most participants had limited knowledge about AAC that led them to experience difficulties supporting their students. Teachers were motivated to receive AAC-related training to enable them to use AAC more successfully with their students given the small number of SLPs in the country.
    Matched MeSH terms: Disabled Children/education*
  16. Ismail AF, Adnan NH, Suhaidi NNS, Mokhtar IW, Yusof MYPM, Mallineni SK
    J Indian Soc Pedod Prev Dent, 2024 Jan 01;42(1):64-70.
    PMID: 38616429 DOI: 10.4103/jisppd.jisppd_47_24
    AIM: This study aimed to validate the accuracy of dental age (DA) based on the dental development of permanent teeth in children with special needs using Demirjian, Willems, and London Atlas methods and to correlate the dental and chronological age (CA) of children with special needs in Malaysia.

    MATERIALS AND METHODS: The panoramic radiographic images belonging to children with special needs from the two teaching dental hospitals in Malaysia aged between 5 and 16 years were included in the study. The evaluation was performed by two observers using three methods (London Atlas, Demirjian, and Willems methods) to estimate the accurate DA. The outcome was determined by comparing the mean of the DA and CA.

    RESULTS: A total of 52 panoramic radiographs were available for the analysis. The London Atlas and Demirjian methods overestimated the DA with a mean of 0.05 and 0.20 years, respectively, while the Willems method underestimated by 0.19 years. The London Atlas method was highly precise and accurate, while Demirjian and Willems methods were the least precise and accurate.

    CONCLUSION: The London Atlas method of DA estimation is highly accurate and valid for children with special needs in the Malaysian population, followed by the Willems and Demirjian methods.

    Matched MeSH terms: Disabled Children*
  17. 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*
  18. 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*
  19. 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*
  20. Hasan H, Abdul Aziz AF, Aljunid SM
    Health Soc Care Community, 2021 01;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*
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