Eltern von chronisch kranken Kindern

Wiedebusch, Silvia; Muthny, F. A.

doi:10.1007/s00112-009-1996-8

Cited by 10 publications

(3 citation statements)

References 29 publications

(25 reference statements)

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“…When comparing mothers and fathers, mothers usually report higher stress levels and psychosocial stress as well as greater impairment in everyday life than fathers [11]. Moreover, mothers' stress levels increase over time, while fathers' stress levels tend to remain constant [12].…”

Section: Introductionmentioning

confidence: 99%

The Impact of Demographic Characteristics on Parenting Stress among Parents of Children with Disabilities: A Cross-Sectional Study

Scheibner,

Hornemann

et al. 2024

Children

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Even though it is already known that parents of children with developmental delays or disabilities experience higher parenting stress than families of typically developing children, the contributing factors need to be analyzed in more detail. The aim of this cross-sectional study was to examine the influence of demographic characteristics on parenting stress from caring for a disabled child and to identify possible protective or additional stressful social factors. A total of 611 mothers and fathers of children with developmental delays, chronic diseases, or disabilities completed two questionnaires during their medical appointments at the Children’s Development Center (CDC) of Leipzig University Hospital between June 2020 and February 2021. These consisted of the German versions of the Parenting Stress Index (PSI) and the Impact on Family Scale (IOFS). To determine differences between the various groups, we used parametric and non-parametric tests. Mothers and single parents are significantly more strained than fathers and non-single parents. Parents with vocational training, those who graduated with a higher-level diploma, and those within employment report a higher financial burden. While unemployed and full-time workers experience the lowest stress, parents who work part-time or exclusively take care of their child show higher levels of stress. Looking at the age of the child, parents of children of young primary school age are the most stressed, and those of infants are the least stressed. These findings suggest that mothers and single parents especially should receive more support, and parents need to be provided with more attention during their child’s entry into school. Possible limitations and the influence of the COVID-19 pandemic are discussed.

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Section: Introductionmentioning

confidence: 99%

The Impact of Demographic Characteristics on Parenting Stress among Parents of Children with Disabilities: A Cross-Sectional Study

Scheibner,

Hornemann

et al. 2024

Children

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“…Caregivers act as the provider, decision maker, companion, custodian and advocate for a child with disability, playing an extremely crucial role in the process of children's rehabilitation and growth (Dambi et al, 2016; Park, 2021). Numerous studies have indicated that the increased burden had a negative effect on caregiver's quality of life as well as well‐being and was associated with child health outcomes (Davis et al, 2021; Dobhal et al, 2014; Farajzadeh et al, 2020; Meade et al, 2021; Miadich et al, 2015; Oliveira Barros et al, 2019; Wiedebusch & Muthny, 2009). Amid this social climate, evaluating caregiver burden and its health impact is an essential component of long‐term care plan for children with disabilities (Wijesinghe et al, 2013).…”

Section: Introductionmentioning

confidence: 99%

The Chinese version of the Caregiver Difficulties Scale: Psychometric evaluation

Zhong

Guo

Zhang

et al. 2023

Child

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Background: Evaluating caregiver burden and its health impact is an essential component of long-term care plan for children with disabilities; the Caregiver Difficulties Scale (CDS) has high conceptual sensitivity. The aim of this study was to adapt the CDS to Chinese and investigates the psychometric properties of this tool. Methods: The study was carried out among caregivers of children with cerebral palsy (n = 194). The CDS, Caregivers Burden Inventory (CBI) and World Health Organization Quality of Life-BREF (WHOQOL-BREF) were used for data collection. Twenty experts were consulted to evaluate the content validity of the scale. The confirmatory factor analysis was conducted to measure the construct validity of CDS. The Spearman correlation coefficients were calculated among CDS, CBI and WHOQOL-BREF to examine the convergent validity and discriminant validity. The reliability was evaluated by examining internal consistency and test-retest reliability. Results: The result of expert consultation showed that the S-CVI was 0.894 and the I-CVI ranged from 0.70 to 1.00. The fit indices showed that the original correlated four-factor model of CDS was adequate: χ 2 = 268.397; df = 243; χ 2 /df = 1.105; RMSEA = 0.023; CFI = 0.985; NNFI = 0.869; TLI = 0.982; IFI = 0.986. The score of CDS was positively strong associated with the scores of CBI (r = +0.764); negatively correlating with the scores of WHOQOL-BREF (r = À0.627). The Cronbach's alpha was 0.840; intraclass correlation coefficient (ICC) value was 0.843. Conclusions:The Chinese version of the CDS is a valid and reliable tool to evaluate burden for caregivers of children with CP in China.

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“…The NEST project (German acronym for, Strengthening and relief for families with children in need of care through family health partners in regional NEtwork STructures') starts facing the problem that families with children with severe health problems due to disability or chronic illness are exposed to strong emotional, social, economic and temporal burdens [1][2][3][4][5][6][7]. These burdens result in further health, social and economic risks [8][9][10][11][12][13][14], which often lead to fragile living and burdening care situations for the families concerned [15].…”

Section: Introductionmentioning

confidence: 99%

Family health partners in regional network structures (NEST): A non-randomized controlled trial among parents of chronically ill and disabled children

et al. 2023

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Background The overarching project goal is to evaluate the effectiveness of a cross-sectoral and cross-service provider offering professional support for families with chronically ill and disabled children: so-called Family Health Partners (in German: ‘Familien-Gesundheits-Partner’ or FGP). This needs-oriented service, which is anchored in regional networks, aims to provide ‘holistic’ support for families with children in need of care. Methods We are carrying out a non-randomized controlled trial with four points of measurement (t0-t3 in 18 months), beginning in January 2022. Both intervention and control group include 102 families. Primary outcome measure is the quality of life, secondary outcomes are resilience factors and associated measures as well as the access to care. Multilevel regression models will be used to analyze the longitudinal data. Discussion The strength of this study is that it looks at the health and resilience of all family members involved by examining how a FGP can influence the entire family system with regard to increasing quality of life, resilience and self-efficacy. The network structures of FGP also open up better to previously unknown regional supply offers. There are, however, a number of limitations (e.g. type of outcomes, sample size). Trial registration This study was first registered on the German Clinical Trials Register before enrolment of participants started (ID: DRKS00027465, 4 January 2022). In order to promote its dissemination, it was also retrospectively registered on ClinicalTrials.gov (ID: NCT05418205, 14 June 2022).

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Eltern von chronisch kranken Kindern

Cited by 10 publications

References 29 publications

The Impact of Demographic Characteristics on Parenting Stress among Parents of Children with Disabilities: A Cross-Sectional Study

The Impact of Demographic Characteristics on Parenting Stress among Parents of Children with Disabilities: A Cross-Sectional Study

The Chinese version of the Caregiver Difficulties Scale: Psychometric evaluation

Family health partners in regional network structures (NEST): A non-randomized controlled trial among parents of chronically ill and disabled children

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