Das Ulmer Lebensqualitäts-Inventar für Eltern
chronisch kranker Kinder (ULQIE):

Goldbeck, Lutz; Storck, Markus

doi:10.1026//1616-3443.31.1.31

Cited by 13 publications

(13 citation statements)

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“…This might be due to much common variance of different QL dimensions. In contrast to the general response pattern, only concerning self-development do the parents feel restricted, which is consistent with results of investigations in families of oncological, diabetic and epileptic patients [29]. Moderate or in some domains absent intraclass correlations between the children's parent-rated and self-rated QL indicate limited inter-rater agreement.…”

Section: Discussionsupporting

confidence: 65%

Quality of Life in Families of Children with Congenital Heart Disease

Goldbeck¹,

Melches²

2005

Qual Life Res

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Within a family perspective on quality of life (QL) with congenital heart disease, the study investigates parental QL, and patients' health-related QL as reported by themselves and by their parents. We examined the hypotheses that parental QL moderates the parental proxy reports. Sixty-nine patients (7-20 years, 61% male) and their caregivers participated in a computer-assisted QL-assessment. Children's self-rated and proxy-rated QL correlated moderately, with the highest intra-class correlation on the subscale psychological well-being/functioning (r = 0.61; p < 0.001), less convergence in physical well-being/functioning (r = 0.49; p < 0.001) and absent correlation in the evaluation of intra-family relationships. Parental QL was correlated both with the children's self-rated QL (r = 0.42; p < 0.05) and children's parent-rated QL (r = 0.60; p < 0.001). Support for the moderator hypotheses is indicated by the results of regression analyses demonstrating a significant interaction effect of parental QL and patients' self-reported QL in predicting parental proxy reports on their children's QL. Post-hoc tests reveal that parents with low own QL agree significantly more with their children than parents with high QL. Parent-child agreement on the children's QL is limited and reflects complementary subjective viewpoints. Psychosocial interventions should be family-focused and provide support for patients' and their caregivers' QL.

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Section: Discussionsupporting

confidence: 65%

Quality of Life in Families of Children with Congenital Heart Disease

Goldbeck¹,

Melches²

2005

Qual Life Res

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“…Ulm Quality of Life Inventory for Parents (ULQIE) [22] Parents′ perceived quality of life during the last week was assessed by an instrument that was designed for parents of chronically ill children. The 29 items of the ULQIE were answered on a five-point Likert scale (0 = "never" to 4 = "always").…”

Section: Social Orientations Of Parents Of Handicapped Childrenmentioning

confidence: 99%

Health-related quality of life, psychosocial strains, and coping in parents of children with chronic renal failure

Wiedebusch

Konrad²,

Foppe³

et al. 2010

Pediatr Nephrol

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Health-related quality of life (HRQOL) in parents of children suffering from renal disease is often diminished by the illness burden experienced in daily life and by unfavorable ways of coping. Our aim was to examine the relationship between psychosocial strains perceived by parents, their ways of coping, and HRQOL. In an anonymous cross-sectional study, parents completed a questionnaire concerning psychosocial strains, coping strategies, and HRQOL, as well as sociodemographic and illness parameters. Study participants were recruited in two outpatient dialysis centers. Participating in the study were 195 parents (105 mothers, 90 fathers; age 43 +/- 8 years; representing 108 families) of children suffering from renal disease (age 12 +/- 5 years). Parents of children with chronic renal failure reported moderate HRQOL with parents of children undergoing dialysis experiencing more limitations in quality of life than parents of children living with a kidney graft and parents of children undergoing conservative treatment. Mothers experienced lower HRQOL and higher psychosocial strains than fathers. HRQOL was predicted by the coping strategies "focusing on child" (beta = -0.25), "improving marital relationship" (beta = 0.24), "seeking social support" (beta = -0.22) and "self-acceptation and growth" (beta =0 .19) as well as parents' perceived limitation by illness in daily life (beta = -0.15; explained variance 57%). In the comprehensive care for families with a child suffering from a renal disease, screening for psychosocial strains and ways of coping, along with applying interventions to strengthen adaptive coping strategies, may be a preventative means of improving parents' quality of life.

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“…Angesichts dieser vielfältigen Stressoren und Belastungen verwundert es nicht, dass Eltern von Kindern mit verschiedenen chronischen Erkrankungen über-einstimmend von einem Verlust an Lebensqualität berichteten [2,14,19,26]. Über die Bedürfnisse von Eltern chronisch kranker Kinder ist wenig bekannt [9], obwohl dieses Thema im Hinblick auf die Versorgung der Patientenfamilien eine hohe Relevanz besitzt.…”

Section: Lebensqualität Psychosoziale Belastungen Und Bedürfnisseunclassified

“…Ulmer Lebensqualitätsinventar für Eltern chronisch kranker Kinder (ULQIE)[14].F Belastungen der Geschwister sowie F Probleme bei der Bewältigung.Fragebogen zur Lebensqualität von Pflegepersonen von Kindern und Jugendlichen mit Asthma. [Deutsche Version des "pediatric asthma quality of life questionnaire", PACQLQ, von Juniper (unveröffentlichtes Manuskript)].…”

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Eltern von chronisch kranken Kindern

Wiedebusch

Muthny

2009

Monatsschr Kinderheilkd

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Das Ulmer Lebensqualitäts-Inventar für Eltern chronisch kranker Kinder (ULQIE):

Cited by 13 publications

References 0 publications

Quality of Life in Families of Children with Congenital Heart Disease

Quality of Life in Families of Children with Congenital Heart Disease

Health-related quality of life, psychosocial strains, and coping in parents of children with chronic renal failure

Eltern von chronisch kranken Kindern

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