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      A Systematic Review and Research Agenda on Mental Wellbeing of the Caregivers of Intellectually Disabled Children

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          Abstract

          Purpose: Intellectual disability is an umbrella term that focuses on the difficulties in understanding, comprehending, and applying things. Children having intellectual disabilities will have difficulty in adaptive functioning like understanding, communicating, identifying, learning, giving attention, or thinking. The main aim was to identify and intervene in the mental well-being of the caretakers and parents having intellectually disabled children. To elicit parents' perspectives on benefits for children having intellectual disability in connection with demographic details, formative years, resources, and to confront the consequences of upbringing a child with intellectual disability. Design/Methodology/Approach: Systematic literature, resulting in the publication of studies that centered on the mental health of parents and caregivers of children having intellectual disability. Systematic literature scrutiny was performed using the search words intellectually disabled children, caregiver/ parents/ mother and mental health and well-being in the electronic databases Research gate, Academia, Google Scholar, and Psyc Info. Findings/Result: As a result of caring for their challenged children, parents frequently experience physical and psychological discomfort, negatively impacting their psychological well-being in daily life. Parents of children with severe disabilities may suffer more stress while caring for them since they demand more physical exertion. For a variety of reasons, it is considered that parents' physical and psychological well-being has a direct impact on their children. This article reviews the various literature and the interpretation can be useful for clinical purpose to improve, understand issues among caregivers of disabled children and also to provide future directions, to improve parental well-being by reducing parental stress Parents of children with intellectual disabilities are more likely to suffer from mental health problems, according to research. Originality/Value: This review presents key findings from studies that show parental stress and the need for psycho education to help parents give their children with intellectual disabilities with evidence-based assistance and intervention. Given the increased risk of stress, anxiety, and depression that this demographic has been linked to, we first address stressors and challenges associated with intellectual disability, as well as the future direction of the present research. Following that, we describe contemporary trends and difficulties and seek to fill in gaps in the existing literature, indicating that more research is needed. We conclude that future research on psychoeducation intervention and relaxation therapy for improving the subjective wellbeing of caregivers of intellectually challenged children is needed. Implementing parental interventions in parallel with the child's interventions may raise mental health. Paper Type: Systematic literature review-based analysis.

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          Most cited references88

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          Prevalence of intellectual disability: a meta-analysis of population-based studies.

          Intellectual disability is an extremely stigmatizing condition and involves utilization of large public health resources, but most data about its burden is based on studies conducted in developed countries. The aim of this meta-analysis was to collate data from published literature and estimate the prevalence of intellectual disability across all such studies. The review includes studies published between 1980 and 2009, and includes data from populations that provided an overall estimate of the prevalence of intellectual disability. Meta-analysis was done using random effects to account for heterogeneity. Sub-group analyses were also done. The prevalence of intellectual disability across all 52 studies included in the meta-analysis was 10.37/1000 population. The estimates varied according to income group of the country of origin, the age-group of the study population, and study design. The highest rates were seen in countries from low- and middle income countries. Studies based on identification of cases by using psychological assessments or scales showed higher prevalence compared to those using standard diagnostic systems and disability instruments. Prevalence was higher among studies based on children/adolescents, compared to those on adults. Higher prevalence in low and middle income group countries is of concern given the limitations in available resources in such countries to manage intellectual disability. The importance of using standardized diagnostic systems to correctly estimate the burden is underlined. The public health and research implications of this meta-analysis have been discussed. Copyright © 2010 Elsevier Ltd. All rights reserved.
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            Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: associations with child characteristics.

            Elevated parenting stress is observed among mothers of older children with autism spectrum disorders (ASD), but little is known about parents of young newly-diagnosed children. Associations between child behavior and parenting stress were examined in mothers and fathers of 54 toddlers with ASD (mean age = 26.9 months). Parents reported elevated parenting stress. Deficits/delays in children's social relatedness were associated with overall parenting stress, parent-child relationship problems, and distress for mothers and fathers. Regulatory problems were associated with maternal stress, whereas externalizing behaviors were associated with paternal stress. Cognitive functioning, communication deficits, and atypical behaviors were not uniquely associated with parenting stress. Clinical assessment of parental stress, acknowledging differences in parenting experiences for mothers and fathers of young children with ASD, is needed.
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              Diagnostic exome sequencing in persons with severe intellectual disability.

              The causes of intellectual disability remain largely unknown because of extensive clinical and genetic heterogeneity. We evaluated patients with intellectual disability to exclude known causes of the disorder. We then sequenced the coding regions of more than 21,000 genes obtained from 100 patients with an IQ below 50 and their unaffected parents. A data-analysis procedure was developed to identify and classify de novo, autosomal recessive, and X-linked mutations. In addition, we used high-throughput resequencing to confirm new candidate genes in 765 persons with intellectual disability (a confirmation series). All mutations were evaluated by molecular geneticists and clinicians in the context of the patients' clinical presentation. We identified 79 de novo mutations in 53 of 100 patients. A total of 10 de novo mutations and 3 X-linked (maternally inherited) mutations that had been previously predicted to compromise the function of known intellectual-disability genes were found in 13 patients. Potentially causative de novo mutations in novel candidate genes were detected in 22 patients. Additional de novo mutations in 3 of these candidate genes were identified in patients with similar phenotypes in the confirmation series, providing support for mutations in these genes as the cause of intellectual disability. We detected no causative autosomal recessive inherited mutations in the discovery series. Thus, the total diagnostic yield was 16%, mostly involving de novo mutations. De novo mutations represent an important cause of intellectual disability; exome sequencing was used as an effective diagnostic strategy for their detection. (Funded by the European Union and others.).
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                Author and article information

                Journal
                International Journal of Management, Technology, and Social Sciences
                IJMTS
                Srinivas University
                2581-6012
                April 30 2022
                : 335-353
                Affiliations
                [1 ]Research Scholar, Institute of Social Sciences and Humanities, Srinivas University, Mangaluru, Karnataka, India.
                [2 ]Research Professor, Institute of Social Sciences and Humanities, Srinivas University, Mangaluru, Karnataka, India.
                Article
                10.47992/IJMTS.2581.6012.0194
                d63e9c4d-83f9-4d02-a075-c0f52e5e0cb4
                © 2022

                https://srinivaspublication.com/journal/index.php/ijmts/article/view/1389/644

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