Health related quality of life in parents of six to eight year old children with Down syndrome

Marchal, Jan Pieter; Maurice‐Stam, Heleen; Hatzmann, Janneke; Trotsenburg, A S Paul van; Grootenhuis, Martha A.

doi:10.1016/j.ridd.2013.09.011

Cited by 30 publications

(24 citation statements)

References 47 publications

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“…Ha et al (25) suggested the detrimental impact on mental health of parents is reduced when parents had more positive support from family members. Other studies also reported that more emotional support was related with better cognitive and social functioning (26) and health-related quality of life of the parents (14). When under stress, an individual might turn to religion for many reasons as religion serves as a source of emotional support, a vehicle for positive reinterpretation and growth, or a tactic of active coping with a stressor (18).…”

Section: Discussionmentioning

confidence: 99%

Perceived Stress and Coping Styles among Malay Caregivers of Children with Learning Disabilities in Kelantan

Isa

Ishak

Rahman

et al. 2017

MJMS

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Section: Discussionmentioning

confidence: 99%

Perceived Stress and Coping Styles among Malay Caregivers of Children with Learning Disabilities in Kelantan

Isa

Ishak

Rahman

et al. 2017

MJMS

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“…Although several studies have examined QOL of the caregivers of children with DS (25, 26), caregiver-reported perception of QOL in children with DS has been largely ignored (27). Furthermore, no studies have examined whether obesity, a common condition in youth with DS, affects QOL to the same degree that it does in youth without DS (21, 22).…”

Section: Discussionmentioning

confidence: 99%

Caregiver-Reported Quality of Life in Youth with Down Syndrome

Xanthopoulos

Walega

Xiao

et al. 2017

The Journal of Pediatrics

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Objectives To describe caregiver-reported QOL in youth with DS and to examine the role of obesity on QOL. Study design Caregivers of youth with and without DS aged 10 through 20 years completed questionnaires examining QOL (PedsQL) and weight-related QOL (Impact of Weight on Quality of Life-Kids: IWQOL-Kids). Age- and sex-specific Z-scores were generated for body mass index (BMI). Obesity was defined as a BMI≥95th percentile for age and sex. Results Caregiver-reported Total QOL, Physical Health, and Psychosocial Health summary scores were all lower in the DS group compared with the non-DS controls (p<0.001). Social and School Functioning were also lower (p<0.001), but Emotional Functioning did not differ between DS and non-DS groups (p=0.31). Physical Functioning (p=0.003) and Total scores (p=0.03) differed between obese and non-obese non-DS youth, but no differences were reported between obese and non-obese youth with DS. On the IWQOL-Kids, caregivers of youth with DS reported higher Body Esteem (p=0.020) and Social Life scores (p=0.03) than caregivers of non-DS youth. Caregivers of youth with obesity, regardless of DS status, reported significantly lower weight-specific QOL scores than caregivers for non-obese youth. Conclusion Caregivers reported lower QOL in youth with DS compared with youth without DS with the exception of emotional functioning. Obesity influences most domains of weight-related QOL in youth with and without DS; therefore, providers should address weight concerns in youth with obesity even in the presence of DS.

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“…A strong social network gives parents a chance to divide the responsibilities and worries among other people like friends, family members, and neighbours, and to gain emotional support. In this way, the stress within the marital relationship can be reduced (Marchal et al, 2013). Also, programmes designed for families with disabled children can be a source of knowledge and positive changes in such aspects as developing plans for the family and participating in various organisations (Schuh, Hagner, Villon, & Dixon, 2015).…”

mentioning

confidence: 99%

“…A good emotional relationship between the mother and the father is a form of protection from stress connected with the child's developmental disorders (Pisula, 2007a). Marital quality of couples raising children with Down syndrome is positively correlated with their life satisfaction (Bobkowicz-Lewartowska, 2013;Marchal, Maurice-Stam, Hatzmann, von Trotsenburg, & Grootenhuis, 2013). Results of studies indicate that it is less likely for these parents to divorce than it is for the parents of children with other types of disabilities: in this group, divorces occurred more often before the child with Down syndrome's second birthday (Urbano & Hodapp, 2007).…”

mentioning

confidence: 99%

Perceived stress, ego-resiliency, and relational resources as predictors of psychological well-being in parents of children with Down syndrome

Kózka¹,

Przybyła-Basista²

2017

Health Psychology Report

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The objective of the present study was to examine the role of perceived stress, ego-resiliency, and relational resources in maintaining psychological well-being in parents of children with Down syndrome, in particular in groups of mothers and fathers. Being a parent of a child with a disability is stressful, and it can be a burden. Despite these negative aspects of child-rearing, mothers and fathers are supported by their own resources and help from other people. participants and procedureThe study included 126 parents of children with Down syndrome (75 mothers and 51 fathers). All parents were married at the time of the study (i.e. the study did not involve single parents). The subjects completed questionnaires of psychological well-being, perceived stress, ego-resiliency, quality of marital relationship, and perceived social support. resultsPerceived stress proved to be a negative predictor (β = -.35) of psychological well-being both in the group of all parents and in groups of mothers and fathers. Ego-resiliency, perceived social support, and quality of marital relationship were positive predictors in the group of all parents, whereas ego-resiliency was a positive predictor (β = .29) of psychological well-being of fathers; perceived social support constituted a positive predictor (β = .25) in the group of mothers. conclusionsThe results of the present study show the factors that have a significant effect on parental well-being and may, thus, be unfavourable (e.g. perceived stress) or favourable (e.g. perceived social support for mothers, ego-resiliency for fathers) for adaptation of parents of children with Down syndrome and their mental health. Particularly interesting are the differences in groups of mothers and fathers with regard to factors positively affecting their psychological well-being: relational resources (social support) are factors important for mothers, whereas psychological inner resources (ego-resiliency) are important for fathers. Further research on the topic is needed.

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Health related quality of life in parents of six to eight year old children with Down syndrome

Cited by 30 publications

References 47 publications

Perceived Stress and Coping Styles among Malay Caregivers of Children with Learning Disabilities in Kelantan

Perceived Stress and Coping Styles among Malay Caregivers of Children with Learning Disabilities in Kelantan

Caregiver-Reported Quality of Life in Youth with Down Syndrome

Perceived stress, ego-resiliency, and relational resources as predictors of psychological well-being in parents of children with Down syndrome

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