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      The Health and Well-Being of Caregivers of Technologically Dependent Children

      research-article
      , MBBS, MRCP, MMed, MBA 1 , , MD, BEng 2 , , BSc, MSc, PhD 3 , , MBBS, MD, MPH 4 , , MD, MPH, PhD, FFPH 5
      Global Pediatric Health
      SAGE Publications
      pediatric, home care, caregiver health

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          Abstract

          Caregivers of technology-dependent children face considerable responsibilities. This study examined the association of 2 child-related stressors—functional status and use of mechanical ventilator—with 2 domains of family caregiver well-being—depressive symptoms (Center for Epidemiologic Studies Depression Scale [CES-D]) and health-related quality of life (HRQOL) and family function (PedsQL Family Impact Module). The secondary objective was to determine whether these associations were moderated by caregiver-perceived social support. Structured interviews were conducted with 88 primary family caregivers of technology-dependent children in Singapore. Hierarchical multiple regression was used to assess the primary and secondary objectives. A total of 44.3% of caregivers were at high risk of clinical depression. Moderately poor child functional status was associated with more caregiver depressive symptoms. Perceived social support moderated this association. Family caregivers of technology-dependent children have high levels of depressive symptoms and relatively poor HRQOL and family functioning. Enhancing caregivers’ social support is important for their well-being.

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          Children with medical complexity: an emerging population for clinical and research initiatives.

          Children with medical complexity (CMC) have medical fragility and intensive care needs that are not easily met by existing health care models. CMC may have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, and/or technology dependence for activities of daily living. Although these children are at risk of poor health and family outcomes, there are few well-characterized clinical initiatives and research efforts devoted to improving their care. In this article, we present a definitional framework of CMC that consists of substantial family-identified service needs, characteristic chronic and severe conditions, functional limitations, and high health care use. We explore the diversity of existing care models and apply the principles of the chronic care model to address the clinical needs of CMC. Finally, we suggest a research agenda that uses a uniform definition to accurately describe the population and to evaluate outcomes from the perspectives of the child, the family, and the broader health care system.
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            Parenting stress among caregivers of children with chronic illness: a systematic review.

            To critically review, analyze, and synthesize the literature on parenting stress among caregivers of children with asthma, cancer, cystic fibrosis, diabetes, epilepsy, juvenile rheumatoid arthritis, and/or sickle cell disease. Method PsychInfo, MEDLINE, and Cumulative Index to Nursing and Allied Health Literature were searched according to inclusion criteria. Meta-analysis of 13 studies and qualitative analysis of 96 studies was conducted. Results Caregivers of children with chronic illness reported significantly greater general parenting stress than caregivers of healthy children (d = .40; p = ≤.0001). Qualitative analysis revealed that greater general parenting stress was associated with greater parental responsibility for treatment management and was unrelated to illness duration and severity across illness populations. Greater parenting stress was associated with poorer psychological adjustment in caregivers and children with chronic illness. Conclusion Parenting stress is an important target for future intervention. General and illness-specific measures of parenting stress should be used in future studies.
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              The eight-item modified Medical Outcomes Study Social Support Survey: psychometric evaluation showed excellent performance.

              Evaluation and validation of the psychometric properties of the eight-item modified Medical Outcomes Study Social Support Survey (mMOS-SS). Secondary analyses of data from three populations: Boston breast cancer study (N=660), Los Angeles breast cancer study (N=864), and Medical Outcomes Study (N=1,717). The psychometric evaluation of the eight-item mMOS-SS compared performance across populations and with the original 19-item Medical Outcomes Study Social Support Survey (MOS-SS). Internal reliability, factor structure, construct validity, and discriminant validity were evaluated using Cronbach's alpha, principal factor analysis (PFA), and confirmatory factor analysis (CFA), Spearman and Pearson correlation, t-test and Wilcoxon rank sum tests. mMOS-SS internal reliability was excellent in all three populations. PFA factor loadings were similar across populations; one factor >0.6, well-discriminated two factor (instrumental/emotional social support four items each) >0.5. CFA with a priori two-factor structure yielded consistently adequate model fit (root mean squared errors of approximation 0.054-0.074). mMOS-SS construct and discriminant validity were similar across populations and comparable to MOS-SS. Psychometric properties held when restricted to women aged ≥ 65 years. The psychometric properties of the eight-item mMOS-SS were excellent and similar to those of the original 19-item instrument. Results support the use of briefer mMOS-SS instrument; better suited to multidimensional geriatric assessments and specifically in older women with breast cancer. Copyright © 2012 Elsevier Inc. All rights reserved.
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                Author and article information

                Journal
                Glob Pediatr Health
                Glob Pediatr Health
                GPH
                spgph
                Global Pediatric Health
                SAGE Publications (Sage CA: Los Angeles, CA )
                2333-794X
                23 January 2019
                2019
                : 6
                : 2333794X18823000
                Affiliations
                [1 ]KK Women’s and Children’s Hospital, Singapore
                [2 ]National Healthcare Group, Singapore
                [3 ]Singapore Clinical Research Institute, Singapore
                [4 ]Duke-NUS Medical School, Singapore
                [5 ]Duke University, Durham, NC, USA
                Author notes
                [*]Yoke Hwee Chan, Department of Pediatric Subspecialties, KK Women’s and Children’s Hospital, 100 Bukit Timah Road, Singapore 229899, Singapore. Email: Chan.Yoke.Hwee@ 123456singhealth.com.sg
                Author information
                https://orcid.org/0000-0002-7612-6414
                Article
                10.1177_2333794X18823000
                10.1177/2333794X18823000
                6348537
                30719496
                b22f2e4a-fe10-4827-a777-1ae30bae2e0e
                © The Author(s) 2019

                This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                History
                : 11 December 2017
                : 20 November 2018
                : 20 November 2018
                Categories
                Original Article
                Custom metadata
                January-December 2019

                pediatric,home care,caregiver health
                pediatric, home care, caregiver health

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