A predictive model of Health Related Quality of life of parents of chronically ill children: the importance of care-dependency of their child and their support system

BACKGROUND: Parents of chronically ill children are at risk for a lower Health Related Quality of Life (HRQoL). Insight in the dynamics of factors influencing parental HRQoL is necessary for development of interventions. Aim of the present study was to explore the influence of demographic and disease related factors on parental HRQoL, mediated by employment, income, leisure time, holiday and emotional support in a comprehensive model. METHODS: In a cross-sectional design, 543 parents of chronically ill children completed questionnaires. A conceptual model of parental HRQoL was developed. Structural equation modeling was performed to explore the relations in the conceptual model, and to test if the model fitted the data. RESULTS: The model fitted the data closely (CHISQ(14) = 11.37, p = 0.66; RMSEA = 0.0, 90%CI [0.00;0.034]. The effect of socio-demographic and medical data on HRQoL was mediated by days on holiday (MCS: beta = .21) and emotional support (PCS: beta = .14; MCS: beta = .28). Also, female gender (beta = -.10), age (beta = .10), being chronically ill as a parent (beta = -.34), and care dependency of the child (beta = -.14; beta = -.15) were directly related to parental HRQoL. CONCLUSION: The final model was slightly different from the conceptual model. Main factors explaining parental HRQoL seemed to be emotional support, care dependency, days on holiday and being chronically ill as a parent. Holiday and emotional support mediated the effect of demographic and disease-related factors on HRQoL. Hours of employment, leisure time and household income did not mediate between background characteristics and HRQoL, contrasting the hypothese

Body-and movement-oriented interventions for posttraumatic stress disorder: An updated systematic review and meta-analysis

This study is an update of the meta-analysis we published in 2019 on the effectiveness of body- and movement-oriented interventions (BMOIs) for adults with posttraumatic stress disorder (PTSD) in decreasing PTSD symptoms and secondary outcomes of depressive symptoms, sleep disturbance, and interoceptive awareness. Search terms for BMOIs and PTSD were combined to identify eligible studies in four bibliographical databases. Articles were selected if they included adult participants with a primary diagnosis of PTSD, included BMOI as one of the investigated therapies, were designed as a comparative outcome trial with any control condition, and involved a standardized outcome measure for PTSD symptom severity. This resulted in the addition of 14 new studies compared to the 2019 study. The meta-analysis, which included 29 studies in total, resulted in a mean Hedges’ g effect size of 0.50, 95% CI [0.22, 0.79], in decreasing PTSD symptoms, with very high heterogeneity, I2 = 89%. Meta-analyses of secondary outcomes resulted in Hedges’ g effect sizes of 0.37, 95% CI [0.08, 0.66] for depressive symptoms; 0.62, 95% CI [0.42, 0.81] for sleep quality; and −0.10, 95% CI [−0.23, 0.43] for interoceptive awareness. The risk of bias analysis resulted in some concerns or high risk of bias in almost all included studies; only one study had a low risk of bias. We conclude that BMOIs may be valuable for patients with PTSD. There is, however, still a lack of high-quality studies with proper control conditions and long-term follow-up periods from which to draw conclusions

Body- and Movement-Oriented Interventions for Posttraumatic Stress Disorder:A Systematic Review and Meta-Analysis

To assess the efficacy of body- and movement-oriented interventions (BMOIs) in traumatized adults with posttraumatic stress disorder (PTSD), we conducted a systematic review and meta-analysis of pertinent literature. Four bibliographical databases (PsycINFO, Ovid MEDLINE(R), EMBASE, and the Cochrane Central Register of Controlled Trials) were searched using keywords and text words for trials on BMOIs addressing PTSD. The search included articles published between October 2005 and August 2017. Studies were included if participants were adults suffering from PTSD, if BMOIs were the therapeutic strategy under investigation, and if a psychometrically evaluated standardized outcome measure for PTSD was used. No limitations for control conditions were applied. Hedges’ g was computed as the effect size (ES) for the treatment versus control condition. The meta-analysis included 15 studies, which resulted in a mean ES of g = 0.85, 95% CI [0.31, 1.39], with very high heterogeneity, I2 = 91%. After removing one study as outlier, a mean effect size of g = 0.56, 95% CI [0.29, 0.82] (i.e., medium effect), still with considerable heterogeneity, I2 = 57%, was found. BMOIs seem to be effective in reducing symptoms of PTSD, but more research is needed to identify working mechanisms and to determine which types of intervention are most effective for various subgroups of patients

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

Raising a child with Down syndrome (DS) has been found to be associated with lowered health related quality of life (HRQoL) in the domains cognitive functioning, social functioning, daily activities and vitality. We aimed to explore which socio-demographics, child functioning and psychosocial variables were related to these HRQoL domains in parents of children with DS. Parents of 98 children with DS completed the TNO-AZL adult quality of life questionnaire (TAAQOL) and a questionnaire assessing socio-demographic, child functioning and psychosocial predictors. Using multiple linear regression analyses for each category of predictors, we selected relevant predictors for the final models. The final multiple linear regression models revealed that cognitive functioning was best predicted by the sleep of the child (β=.29, p <.01) and by the parent having given up a hobby (β=-.29, p <.01), social functioning by the quality of the partner relation (β=.34, p <.001), daily activities by the parent having to care for an ill friend or family member (β=-.31, p <.01), and vitality by the parent having enough personal time (β=.32, p <.01). Overall, psychosocial variables rather than socio-demographics or child functioning showed most consistent and powerful relations to the HRQoL domains of cognitive functioning, social functioning, daily activities and vitality. These psychosocial variables mainly related to social support and time pressure. Systematic screening of parents to detect problems timely, and interventions targeting the supportive network and the demands in time are recommende

Predicting health-related quality of life of parents of children with inherited metabolic diseases

The aim of this study was to examine medical, socio-demographic and psychosocial determinants of health-related quality of life (HRQoL) of parents of children with metabolic diseases. A survey among parents of children with metabolic diseases (children aged 1-19 years, diagnosed > 1 year before the start of the study, living at home). Parents were approached through the Emma Children's Hospital, and through a national parent and patient association. HRQoL was assessed using the TNO-AZL Questionnaire for Adult's Health Related Quality of Life (TAAQOL), describing 12 domains of HRQoL. Predictor variables were taken from a self-report questionnaire. Univariate and multivariate logistic regression analyses were performed to predict which parents were at risk for HRQoL impairment. Mainly psychosocial determinants were predictive for parental HRQoL. Emotional support was protective for parental HRQOL while loss of friendship was a risk factor for HRQoL impairment. Medical and socio-demographic variables did not consistently predict parental HRQoL. Psychosocial determinants appeared more important in predicting parental HRQoL than medical and socio-demographic variables. Interventions should be focused on supporting parents combining the care for their children with a social life. Further research on this subject is necessary. In the meantime, involved medical specialists should pay structural attention to parental functionin

Quality of life of female caregivers of children with sickle cell disease: a survey

Caring for a child with sickle cell disease poses extra demands on parents, both practically and psychologically, which may influence their quality of life. Since families of children with sickle cell disease in the Netherlands usually belong to immigrant communities with a low socio-economic status, there may be an additional strain on caregivers. The aim of the present study was to evaluate the quality of life of caregivers of children with sickle cell disease. The quality of life of female caregivers of sickle cell disease patients, measured with the TNO-AZL Adult Quality of Life questionnaire, was compared to the norm data of healthy Dutch females (n=700) and female caregivers of healthy children with the same socio-economic status and ethnic background (socio-economic status control group). Groups were compared by the Mann-Whitney U test. Point estimates and 95% confidence intervals of the median difference are presented. The results of questionnaires of 54 caregivers of children with sickle cell disease and 28 caregivers of a control group of the same socio-economic status were analyzed. Caregivers of patients with sickle cell disease had a significantly lower quality of life on all subscales compared to the Dutch norm population. Compared to the control group of the same socio-economic status, the quality of life of caregivers of patients with sickle cell disease was significantly lower on the subscales depressive moods, daily activities and vitality. In this first study reporting on the quality of life of caregivers of children with sickle cell disease, we demonstrate a reduced quality of life in these caregivers compared to the healthy Dutch female population and caregivers of healthy children with the same socio-economic statu