Predictors of Parental Quality of Life after Child Open Heart Surgery: A 6-Month Prospective Study

doi:10.1016/j.jpeds.2010.06.037

The Journal of Pediatrics

Volume 158, Issue 1, January 2011, Pages 37-43

https://doi.org/10.1016/j.jpeds.2010.06.037 Get rights and content

Objective

To prospectively assess parental health-related quality of life (HRQoL) and its predictors after child open heart surgery.

Study design

Mothers (n = 135) and fathers (n = 97) of 138 children were assessed at discharge from hospital and 6 months after open heart surgery of their child. Parental HRQoL was compared with population norms. Medical, demographic, and psychosocial predictors of HRQoL were examined.

Results

In both parents, several domains of HRQoL were decreased at their child's hospital discharge with mothers showing lower HRQoL than fathers. Mental domains were more affected than physical domains. At 6 months, parental HRQoL was within or above population norms. At discharge, symptoms of post-traumatic stress and at 6 months a high impact of the child's disease on family life were associated with low mental HRQoL in both parents. In mothers, lower socioeconomic status and foreign nationality were also associated with a higher risk for low mental HRQoL at discharge.

Conclusions

Parents' mental HRQoL is low in the immediate period after their child's open heart surgery but normalizes after 6 months. However, parents in whom the child's disease has a high impact on their family life are at increased risk for persistent low mental HRQoL.

Section snippets

Methods

Parents of children with CHD who had undergone cardiopulmonary bypass surgery were consecutively recruited between July 2004 and July 2006 at the University Children's Hospital Zurich if they had a fluent command of the German language and if their child was aged between 0 and 16 years at surgery. Overall, 321 children were operated on during the study period. Of these, 68 had to be excluded because of the language criterion and 14 children died before parents could be approached for consent.

Results

The 138 children with CHD (49.3% female) of the included parents were on average 3.1 years old at assessment (SD = 4.6 years; median = 0.7 years; range, 0.1 to 15.4 years) and had the following types of CHD: atrial and ventricular septal defects, 36.2%; other noncyanotic CHD, 19.6%; transposition of the great arteries, 9.4%; other cyanotic CHD, 34.8%. Thirteen patients (9.4%) had a diagnosis of trisomy 21, 22 children (15.9%) had another genetic defect. No child was diagnosed with fetal alcohol

Discussion

In support of our hypothesis, all impaired domains of parental HRQoL at discharge significantly improved over time and were within or above population norms 6 months later. This normalization contrasts findings of the other studies, which both found a decreased HRQoL among parents.10, 11 However, comparisons are limited by methodological issues: Our study is prospective, whereas both previous studies were cross-sectional and did not examine temporal changes of HRQoL. Also, the samples were more

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Elevated post-traumatic stress symptoms (PTSS) and reduced health-related quality of life (HRQoL) are commonly experienced in both children and their parent's following admission to the paediatric intensive care unit (PICU). Previous research has demonstrated a conflict in the directionality between PTSS and HRQoL in children and their parents. Our study sought to explore the interconnection and transmission between PTSS and HRQoL in children and their mothers following an admission to the PICU.
Prospective longitudinal design.
Two tertiary care PICUs in Brisbane, Australia.
Two hundred eighty-two mother–child dyads of children aged 2–16 years admitted to the PICU for >8 h.
None.
Four waves of dyadic data (n = 282 mother–child dyads) over a 12-month period from the PICU post-traumatic stress study were used. Cross-lagged panel modelling was used to examine the link between maternal-rated PTSS and HRQoL across children and their mothers. Actor–partner interdependence modelling was then used to examine the interconnections between mothers and children over time. In the dyadic model, partner effects were only present from mother to their child (i.e., higher maternal PTSS was predictive of higher child PTSS at subsequent time points). Higher maternal PTSS predicted lower maternal mental HRQoL but not lower child psychosocial HRQoL. Actor effects were also present with lower child psychosocial HRQoL, predicting higher child PTSS at subsequent time points. Findings indicated that a unidirectional transmission process from mother to child may be present after a child's life-threatening illness.
This study provides evidence for a long-term negative influence of maternal PTSS on child PTSS in families who have experienced a paediatric critical illness or injury. This highlights the important role of maternal wellbeing in children's mental health outcomes following PICU admission. Further research needs to explore the temporal and dyadic relationships of PTSS and HRQoL.
Epidemical trends and risk factors of PTSD in parents of critically ill children: Evidence from both meta-analysis and subgroup analysis
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Post-Traumatic Stress Disorder (PTSD) in parents traumatized by a child's critical illness, while differences in prevalence and risk factors for parental PTSD in previous studies. This study aimed to assess trends in the prevalence and risk factors for PTSD in parents of critically ill children.
Nine main databases were searched to extract the prevalence, sample size and risk factors from the published literature. Random effects model analysis, I² statistic, quality assessment, subgroup analysis and sensitivity analysis were performed.
Twenty-five studies met the inclusion criteria, with pooled prevalence rates of 13.8 % (95 % CI: [confidence interval, CI] 10.0 %–17.7 %) in fathers and 20.2 % (95 % CI:16.1 %–24.3 %) in mothers. Mothers had a significantly higher prevalence of PTSD compared to fathers. The prevalence of PTSD generally increased after discharge, with the highest prevalence at 6 months, but then decreased (fathers: 18.0 %, CI: 6.1 %–29.9 %; mothers: 20.2 %, CI: 12.8 %–27.6 %), respectively. The results showed five risks, positive acute stress disorder (ASD) screening (OR [odds ratio, OR] =2.45), disease severity (OR = 3.78), perceived stress (OR = 1.44), unemployed status (OR = 2.52) and length of hospital stay (OR = 1.01).
Due to the limitations of the original study, we could not explore trends in the prevalence of PTSD in this particular population over a more extended period after hospital discharge.
The prevalence of PTSD among parents of critically ill children is high and significantly different. Therefore, it is crucial to focus on this vulnerable group, providing them with essential psychological counseling and comprehensive social support to reduce the occurrence of PTSD.
Factors affecting the postoperative quality of life and psychological well-being in pediatric urology patients
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While most studies in pediatric urology investigate the clinical results, very few explore the relationship between surgery and quality of life and psychosocial well-being in pediatric urology practice. The determination of the effects of the surgical method on the quality of life (QoL) is of increasing importance.
This study investigated the effect of surgery type on the postoperative QoL and psychological well-being of pediatric urological surgery patients.
A total of 151 children and adolescents (4–18 years old) undergoing elective urological surgery between September 2020 and July 2021 were evaluated preoperatively; those who currently had psychiatric disorders were excluded. Of the 98 patients undergoing subsequent detailed preoperative assessment using standardized instruments to evaluate QoL and depression and anxiety symptom levels, only 63 could be re-evaluated postoperatively at a 6-month follow-up. Additionally, preoperative parental psychiatric symptom load was assessed using standardized self-report forms.
The patients were classified into two categories for analysis–open versus endourological surgery and major versus minor surgery. In the latter category, there was a significant increase in the postoperative QoL in children undergoing minor urological surgery (p = 0.037). Furthermore, the table depicted the regression analysis indicating the predictors for lower postoperative QoL. Those predictors were higher parental preoperative psychiatric symptom load, a greater number of previous surgeries, and female gender (p < 0.001, adjusted R² = 0.304).
Postoperative QoL of children/adolescents undergoing pediatric urology surgery is affected more by the patient's preoperative medical condition and the psychological status of the patient's parents, rather than the surgical method opted for.
The Relationship of Family Factors to Psychosocial Outcomes in Children with Hypoplastic Left Heart Syndrome at 6 Years of Age
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The objective of this study was to describe the relationships between family factors and outcomes for children with hypoplastic left heart syndrome (HLHS).
This cross-sectional study was ancillary to the Pediatric Heart Network Single Ventricle Reconstruction Extension Study to examine family factors including parental mental health, quality of life (QOL), family resources, function and management, and their relationships to child psychosocial outcomes (adaptive behavior, internalizing and externalizing behaviors and health-related quality of life [HRQOL]) at 6 years of age.
Participants were parents (115 mothers, 71 fathers) of children with HLHS. Parents reported anxiety, QOL and family resources that were worse than the general population; 33% reported family dysfunction. There were no meaningful differences between reports from mothers and fathers. Parental perception of better child health was associated with better family management of the condition (P < .05). Several family management factors explained a moderate amount of variance in adaptive behavior (ΔR² = 0.08-0.14), adaptive skills (ΔR² = 0.19-0.21), and HRQOL scores (ΔR² = 0.04-0.18); little variance was explained in internalizing problems (ΔR² = 0.02-0.03) (all P < .05) above and beyond demographic and clinical variables.
HLHS has a significant impact on both children and families. Relationships between child and family characteristics may impose risk or protection. Improved understanding of these associations should guide counseling and tailored interventions.
Prognostic factors influencing parental empowerment after discharge of their hospitalized child: A cross-sectional study
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There is a growing number of children with medical complexity (CMC). After hospitalization, care often has to be continued at home, making transitional care very important. However, many parents do not feel empowered in their role as caregiver for the child. To move forward in this field, we explored prognostic factors associated with parental empowerment after discharge of hospitalized children.
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Data from 228 patients and their parents were analyzed. Out of twelve factors included in the study, three showed significant associations with parental empowerment. Parents of CMC felt more empowered compared to parents of children with less complex conditions (β = 0.20, p = 0.00). We found a positive association between the age of the child and parental empowerment (β = 0.01, p = 0.00). Employed couples felt more empowered compared to unemployed couples (β = 0.30, p = 0.00). These three variables explained 11% of variance in the FES scores.
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Impact in the quality of life of parents of children with chronic diseases using psychoeducational interventions – A systematic review with meta-analysis
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This study aimed to identify psychoeducational interventions applied to parents of children with chronic diseases and evaluate their impact on their quality of life (QoL).
It was conducted in six databases, complemented by references from the included studies and other reviews, manual search, and contact with experts. We included primary studies on parents of children with chronic diseases that studied psychoeducational interventions versus standard care.
We screened 6604 titles and abstracts, reviewed the full text of 60 records, and included 37 primary studies. Half of the studies were on Asthma. We found three intervention formats: one-to-one (43%), groups (49%), and combined approach with individual and group settings (8%). More than 60% of the included studies found statistically significant differences between the intervention and the control group (p < 0.05).
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: Supported by the Foundation Mercator Switzerland, who had no influence on study design, the collection, analysis, and interpretation of data, the writing of the report, and the decision to submit the paper for publication. The authors declare no conflicts of interest.

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Original ArticlePredictors of Parental Quality of Life after Child Open Heart Surgery: A 6-Month Prospective Study

Objective

Study design

Results

Conclusions

Section snippets

Methods

Results

Discussion

J Pediatr

J Pediatr Health Care

J Am Acad Child Adolesc Psychiatry

J Psychos Res

Heart Lung

Lancet

J Pediatr

J Am Acad Child Adolesc Psychiatry

Soc Sci Med

Surgery-related posttraumatic stress disorder in parents of children undergoing cardiopulmonary bypass surgery: a prospective cohort study

Pediatr Crit Care Med

Factors influencing satisfaction and well-being among parents of congenital heart disease children: development of a conceptual model based on the literature review

Scand J Caring Sci

A reformulation of quality of life for medical science

Quality of life among parents of children with heart disease

Health Qual Life Outcomes

Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children

Qual Life Res

Original Article
Predictors of Parental Quality of Life after Child Open Heart Surgery: A 6-Month Prospective Study