Perceived Experiences of Life Problems for Parents with a Down Syndrome Child

Rahimi, Tahereh; Khazir, Zahra

doi:10.29252/hehp.7.3.147

Cited by 2 publications

(2 citation statements)

References 28 publications

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“…The results of this study emphasise the need for more support for children with Down syndrome regarding the prevention and management of infections, especially respiratory tract infections. Lastly, medical complications in children with Down syndrome is one of the most important challenges perceived by parents (Hanson 2003;Rahimi and Khazir 2019); therefore, it is necessary for clinicians to provide up-to-date information when counselling parents. Parents are in need of better quality information provided by healthcare providers regarding a diagnosis of Down syndrome (Skotko et al 2009a;Skotko et al 2009b).…”

Section: Implications For Clinical Carementioning

confidence: 99%

Hospital admissions in infants with Down syndrome: a record‐linked population‐based cohort study in Wales

Esperanza

Evans

Tucker

et al. 2021

J intellect Disabil Res

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Background Despite recent advances, mortality in children with Down syndrome remains five times higher than in the general population. This study aims to describe the burden, patterns and causes of hospital admissions in infants with Down syndrome, and compare this with infants without Down syndrome in a population-based cohort. Methods This study used data from the Wales Electronic Cohort for Children, a cohort of all children born in Wales between 1990 and 2012. The cohort was generated from routine administrative data, linked to create an anonymised data set within the Secure Anonymised Information Linkage databank. This analysis is based on all infants born between January 2003 and January 2012 who were followed to their first birthday, a move out of Wales, death, or until 31 October 2012 (end of follow-up). Infants with Down syndrome were identified using the Congenital Anomaly Register and Information Service in Wales. Multivariable Cox regression was used to compare the time to first hospital admission.

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Section: Implications For Clinical Carementioning

confidence: 99%

Hospital admissions in infants with Down syndrome: a record‐linked population‐based cohort study in Wales

Esperanza

Evans

Tucker

et al. 2021

J intellect Disabil Res

View full text Add to dashboard Cite

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“…Down Syndrome (DS) is the most common chromosomal malformation in newborns due to an extra chromosome number 21 (trisomy21). Each child with DS is a unique individual regarding their care needs [1,2]. In Europe, DS accounts for 8 percent of all reported cases of congenital abnormalities.…”

Section: Introductionmentioning

confidence: 99%

Effectiveness of Promoting Mothers’ Caring Practices Regarding Their Down Syndrome Children on the Family Coping

Hegazy¹,

Baraka²

2021

AJNR

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Down Syndrome is a lifelong chromosomal disorder caused by an extra copy of chromosome number 21 inside each of the body's cells. This genetic disorder, causes mental retardation and developmental delays. Aim of this study was to determine the effect of promoting mothers' caring practices regarding their children with Down Syndrome on the family coping. Subjects and Method: A quasi-experimental research design used for sixty mothers and their children with Down Syndrome at Pediatric Outpatient Genetic Clinic of Tanta University Hospital. Three tools were used for data collection: Structured Interview Schedule to assess socio-demographic and mothers , knowledge about Down Syndrome, Mothers' Care Reporting Sheet and Family Crisis Oriented Personal Scales. Results: The total scores of knowledge for more than three quarters of mothers were low before educational program while, more than half of them had moderate level of knowledge and less than half of them had high level immediately after program. The total scores of most mothers , reported care were unsatisfactory before educational program while, the majority of them had satisfactory care immediately and one month after program. Family adaptation for nearly two thirds of caregivers was fair before program while, all of them had good adaptation immediately after program. Conclusion: There was a significant improvement of mothers , knowledge, reported care and family adaptation towards crises. Recommendations: Continuous health education program should be applied to mothers of children with Down Syndrome in health care facilities to improve their knowledge and practice that affect family adaptation.

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Perceived Experiences of Life Problems for Parents with a Down Syndrome Child

Abstract: How to cite this articleRahimi T, Khazir Z. Perceived Experiences of Life Problems for Parents with a Down Syndrome Child.

Cited by 2 publications

References 28 publications

Hospital admissions in infants with Down syndrome: a record‐linked population‐based cohort study in Wales

Hospital admissions in infants with Down syndrome: a record‐linked population‐based cohort study in Wales

Effectiveness of Promoting Mothers’ Caring Practices Regarding Their Down Syndrome Children on the Family Coping

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