Effectiveness of a Family-oriented Rehabilitation Program on the Quality of Life of Parents of Chronically Ill Children

West, Carolyn A.; Besier, Tanja; Borth-Bruhns, Thomas; Goldbeck, Lutz

doi:10.1055/s-0029-1216364

Cited by 37 publications

(36 citation statements)

References 10 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Taken both, diagnostic and non‐diagnostic groups together, the mean QoL score of mothers was 51.05, indicating impaired QoL compared with other clinical parent populations . Fathers in our study sample reported significantly higher QoL (61.83) compared with mothers (p = 0.01).…”

Section: Resultsmentioning

confidence: 60%

See 1 more Smart Citation

Obtaining a genetic diagnosis in a child with disability: impact on parental quality of life

et al. 2015

Self Cite

View full text Add to dashboard Cite

Recent progress in genetic testing has facilitated obtaining an etiologic diagnosis in children with developmental delay/intellectual disability (DD/ID) or multiple congenital anomalies (MCA) or both. Little is known about the benefits of diagnostic elucidation for affected families. We studied the impact of a genetic diagnosis on parental quality of life (QoL) using a validated semiquantitative questionnaire in families with a disabled child investigated by array-based comparative genomic hybridization (aCGH). We received completed questionnaires from 95 mothers and 76 fathers of 99 families. We used multivariate analysis for adjustment of potential confounders. Taken all 99 families together, maternal QoL score (percentile rank scale 51.05) was significantly lower than fathers' QoL (61.83, p = 0.01). Maternal QoL score was 20.17 [95% CI (5.49; 34.82)] percentile rank scales higher in mothers of children with diagnostic (n = 34) aCGH as opposed to mothers of children with inconclusive (n = 65) aCGH (Hedges' g = 0.71). Comparison of these QoL scores with retrospectively recalled QoL before aCGH revealed an increase of maternal QoL after diagnostic clarification. Our results indicate a benefit for maternal QoL if a genetic test, here aCGH, succeeds to clarify the etiologic diagnosis in a disabled child.

show abstract

Section: Resultsmentioning

confidence: 60%

“…Cronbach's alpha for the subscales was found to be between 0.75 and 0.88, for the global scale 0.91. Retest reliability is between 0.69 and 0.86 (30)(31)(32)(33). Moderate correlations with several scales of the SF-36 questionnaire, a well-known generic QoL questionnaire, were demonstrated (30).…”

Section: Main Outcome Parametermentioning

confidence: 99%

Obtaining a genetic diagnosis in a child with disability: impact on parental quality of life

et al. 2015

Self Cite

View full text Add to dashboard Cite

show abstract

“…For parents of children with other chronic conditions (e.g. cystic fibrosis or cardiac disease) these programs are known to improve PQoL [34]. …”

Section: Discussionmentioning

confidence: 99%

Quality of life among parents of children with phenylketonuria (PKU)

Fidika

Salewski

Goldbeck

2013

Health Qual Life Outcomes

View full text Add to dashboard Cite

BackgroundParents of children with chronic conditions are known to be at risk of impairment in their quality of life (QoL). Studies considering other chronic conditions proposed diverse factors to have an impact on the parent’s QoL. So far, there has been little research on parents who have a child with phenylketonuria (PKU). This study was designed to evaluate the parental quality of life (PQoL) of parents of children and adolescents who have PKU and identify possible predictors of PQoL.MethodsIn this cross-sectional study 89 parents completed self-report measures of PQoL, family stress, social support, and parental coping. To determine the impact of these potential predictors on PQoL, regression and mediation analyses were performed.ResultsMost parents coped well with their children’s metabolic disorder. Family stress (β = −0.42; p < 0.001) and perceived social support (β = 0.33; p = 0.001) were proven to be the most powerful predictors, accounting together for 45% of the variance of PQoL. Social support mediated the association between family stress and PQoL.ConclusionsThe current study indicates that parents of younger children are an especially vulnerable group. Members of health-care teams should be able to identify and empower vulnerable parents to seek and maintain social support.

show abstract

“…Both groups showed improved knowledge about cancer, less emotional symptoms, and higher family satisfaction as well as QoL at discharge from the FOR‐program compared with the baseline assessment. This might be explained by the fact that the control group already received an active family‐oriented intervention . Furthermore, only a small group of siblings showed higher symptoms of emotional distress.…”

Section: Discussionmentioning

confidence: 99%

“…In Germany, specialized clinics set up a family‐oriented rehabilitation (FOR) program that offers medical and multimodal psychosocial interventions to patients and their families, including healthy children. This innovative approach takes into account the importance of all family members for therapeutic success and has been positively evaluated in several studies . In contrast to usual rehabilitation programs that focus solely on the chronically ill children, the FOR‐program includes parents and healthy children, who are classified as secondary patients in the rehabilitation program, based on the assumption that family functioning is a precondition for achieving the child's with cancer rehabilitation .…”

Section: Introductionmentioning

confidence: 99%

Outcomes of an enhancement study with additional psychoeducational sessions for healthy siblings of a child with cancer during inpatient family‐oriented rehabilitation

Niemitz

Goldbeck

2017

Psycho-Oncology

View full text Add to dashboard Cite

show abstract

Effectiveness of a Family-oriented Rehabilitation Program on the Quality of Life of Parents of Chronically Ill Children

Cited by 37 publications

References 10 publications

Obtaining a genetic diagnosis in a child with disability: impact on parental quality of life

Obtaining a genetic diagnosis in a child with disability: impact on parental quality of life

Quality of life among parents of children with phenylketonuria (PKU)

Outcomes of an enhancement study with additional psychoeducational sessions for healthy siblings of a child with cancer during inpatient family‐oriented rehabilitation

Contact Info

Product

Resources

About