Objectives: Empirical assessment of parental needs and affecting factors for counseling success after prenatal diagnosis of congenital heart disease (CHD). Methods:Counseling success after fetal diagnosis of CHD was assessed by a validated standardized questionnaire. The dependent variable “Effective Counseling” was measured in five created analytical dimensions (1. “Transfer of Medical Knowledge—ToMK”; 2. “Trust in Medical Staff—TiMS”; 3. “Transparency Regarding the Treatment Process—TrtTP”; 4. “Coping Resources—CR”; 5. “Perceived Situational Control–PSC”). Analyses were conducted with regard to influencing factors and correlations. Results: Sixty-one individuals (n = 40 females, n = 21 males) were interviewed in a tertiary medical care center. Median gestational age at first parental counseling was 28 + 6 weeks. Parental counseling was performed four times (median), mostly by pediatric cardiologists (83.6%). Overall counseling was successful in 46.3%, satisfying in 51.9%, and unsuccessful in 1.9%. Analyses of the analytical dimensions show that counseling was less successful for TOMK (38.3%) and PSC (39%); success rates were higher if additional written information or links to web sources were provided (60 and 70%, respectively). Length of consultation was positively correlated to counseling success for ToMK (r = 0.458), TrtTP (r = 0.636), PSC (r = 0.341), and TiMS (r = 0.501). Interruptions were negatively correlated to the dimensions TiMS (r = −0.263), and TrtTP (r = −0.210). In the presence of high-risk CHD (37.5%) overall counseling success was lower (26.1%). By cross table analysis and to a low degree of positive correlation in one dimension (ToMK; r = 0.202), counseling tends to be less successful for ToMK, TrtTP, and TiMS if parents have not been counseled by cardiologists. Analyses regarding premises show a parental need for a separate counseling room, which significantly impacts ToMK (r = −0,390) and overall counseling success (r = −0.333). A language barrier was associated with lower success rates for ToMK, TiMS, and CR (21.4, 42.9, and 30.8%). Conclusions: Data from this multidisciplinary study indicate that parents after fetal diagnosis of CHD need uninterrupted counseling of adequate duration and quality in a separate counseling room. Providing additional written information or links to adequate web sources after initial counseling seems necessary. High-risk CHD needs more attention for counseling. There is a trend towards more counseling success if provided by cardiologists.

Counseling for fetal heart disease—current standards and best practice Alexander Kovacevic, Michael Elsässer, Herbert Fluhr, Andreas Müller, Sebastian Starystach, Stefan Bär, Matthias Gorenflo

After diagnosis of congenital heart disease (CHD) in the fetus, effective counseling is considered mandatory. We sought to investigate which factors, including parental social variables, significantly affect counseling outcome. A total of n = 226 parents were recruited prospectively from four national tertiary medical care centers. A validated questionnaire was used to measure counseling success and the effects of modifiers. Multiple linear regression was used to assess the data. Parental perception of interpersonal support by the physician (β = 0.616 ***, p = 0.000), counseling in easy-to-understand terms (β = 0.249 ***, p = 0.000), and a short period of time between suspicion of fetal CHD, seeing a specialist and subsequent counseling (β = 0.135 **, p = 0.006) significantly improve “overall counseling success”. Additional modifiers (e.g., parental native language and age) influence certain subdimensions of counseling such as “trust in medical staff” (language effect: β = 0.131 *, p = 0.011) or “perceived situational control” (age effect: β = 0.166 *, p = 0.010). This study identifies independent factors that significantly affect counseling outcome overall and its subdimensions. In combination with existing recommendations our findings may contribute to more effective parental counseling. We further conclude that implementing communication skills training for specialists should be considered essential.

The objective of this study was to analyze parental counselling for fetal heart disease in an interdisciplinary and multicenter setting using a validated questionnaire covering medical, sociodemographic, and psychological aspects. n = 168 individuals were recruited from two pediatric heart centers and two obstetrics units. Overall, counselling was combined successful and satisfying in >99%; only 0.7% of parents were dissatisfied. “Perceived situational control” was impaired in 22.6%. Adequate duration of counselling leads to more overall counselling success (r = 0.368 ***), as well as providing written or online information (57.7% vs. 41.5%), which is also correlated to more “Transfer of Medical Knowledge” (r = 0.261 ***). Interruptions of consultation are negatively correlated to overall counselling success (r = −0.247 **) and to “Transparency regarding the Treatment Process” (r = −0.227 **). Lacking a separate counselling room is associated with lower counselling success for “Transfer of Medical Knowledge” (r = 0.210 ***). High-risk congenital heart disease (CHD) is correlated to lower counselling success (42.7% vs. 71.4% in low-risk CHD). A lack of parental language skills leads to less overall counselling success. There is a trend towards more counselling success for “Transfer of Medical Knowledge” after being counselled solely by cardiologists in one center (r = 0.208). Our results indicate that a structured approach may lead to more counselling success in selected dimensions. For complex cardiac malformations, counselling by cardiologists is essential. Parental “Perceived Situational Control” is often impaired, highlighting the need for further support throughout the pregnancy.

Background Congenital heart disease is the most common cause of major congenital anomalies. After prenatal diagnosis effective counseling is crucial. However, little research has been undertaken in determining the most effective techniques. Objectives To develop a questionnaire suitable to assess parental needs for counseling. Material and Methods A questionnaire was developed by pediatric cardiologists, maternal-fetal-medicine specialists and sociologists. Likert scaled and open-ended questions are combined with socio-demographical data. The questionnaire was prospectively pilot-tested on 17 parents. We present first analyses of n=41 parents. Results Response rate was 89.5%. The dependent variable “effective counseling” was measured in 5 dimensions (transfer of medical information, trust in medical staff, transparency of treatment process, coping resources and perceived situational control). The questionnaire’s internal consistency is high (Cronbach’s alpha>0.7). First analyses show that 44.7% perceived counseling as successful. Transfer of medical information seems difficult (36.6% success rate). Trust in medical staff was high with 75%. Conclusions This newly developed tool measures counseling success in five dimensions. A multidisciplinary approach is recommended as methodological expertise is essential for constructing adequate tests. Preliminary data indicate that transfer of medical information is not easily achieved. Further analyses are needed to identify factors that determine counseling success.

The progress in fetal cardiology allows for the early diagnosis of congenital heart defects, but there is still a lack of data on the psychological situation of parents expecting a child with a congenital heart defect. In this cross-sectional study, 77 parents (45 women and 32 men) expecting a child with a heart defect were interviewed with different questionnaires. The standardized Hospital Anxiety and Depression Scale (HADS) questionnaire was used to assess the psychological state of the parents. Various statistical procedures were performed to determine the prevalence, risk factors, and predictors of anxiety and depression. The prevalence for prenatal anxiety was 11.8% and for depressed mood 6.6%, whereas the postnatal prevalence was 25% for anxiety and 16.7% for depressed mood. The mother is influential in protecting against depression as a contact person (p = 0.035). Women were more affected by anxiety and depression than men (p = 0.036). A significant and positive correlation was observed between anxiety and depression before birth (ρ = 0.649, p < 0.001) and after birth (ρ = 0.808, p < 0.001). The level of education correlated negatively with depression (p = 0.016) and anxiety (p = 0.017) before birth. Significantly higher anxiety and depression scores were not observed among health and social workers (p = 0.084), first-time mothers (p = 0.190), and parents whose pregnancies were due to medical assistance (p = 0.051). Close collaboration between maternal-fetal care units, pediatric cardiologists and psychiatric/psychosomatic disciplines is a possible strategy to reduce stress in parents. Therefore, an expert team of professionals, educating with understandable terms and sufficient knowledge about fetal heart disease in parenting counseling, is required. The support of affected parents can positively impact the treatment of the child and should be integrated into the daily routine of the clinic.