Objectives: To develop a questionnaire suitable to assess parental needs for counselling after
prenatal diagnosis of congenital heart disease (CHD) in the fetus.
Methods: The questionnaire was developed by pediatric and fetal cardiologists, maternal fetal
medicine specialists and sociologists based on literature research and analysis of
daily practice. Likert scaled and open-ended questions are combined with socio-demographical
data. The questionnaire ends with an open-ended question asking for feedback and additional
remarks. The feasibility of the questionnaire was pre-tested on six individuals. The
revised version was pilot-tested on 17 parents.
Results: Response rate was 89.5%. At time of data collection all children were alive at a
median age of 337 days. Gestational age at fetal diagnosis and first counselling was
28+4 weeks (median). The pilot-test reliability of the dependent variable's dimensions
and the sorrows item set shows good consistency as shown by high values for the reliability
coefficient Cronbach's α of > 0.7 ([Table 1]). The parents´ perceptions were positive and analysis of the open questions showed
that they evaluated the questionnaire as good and perceived it as a chance to participate
in the treatment of their child.
Conclusion: The questionnaire measures reliably and validly parental needs for counselling after
prenatal diagnosis of CHD in the fetus. This newly developed tool enables us to measure
counselling success not only in the dimension of transfer of medical information but
also in the dimensions of trust in medical staff, transparency regarding the treatment
process, coping resources, and perceived situational control. We plan to carry out
factor and cluster analyses to find typical subgroups of parents, which can be distinguished
in terms of the characteristic value of the dependent variable effective counselling.
Table 1 Internal consistency of the questionnaire
|
Dimension
|
Cronbach's α
|
|
Transfer of medical knowledge
|
0.857
|
|
Trust in health personnel/medical staff
|
0.891
|
|
Transparency regarding the treatment process
|
0.841
|
|
Coping resources
|
0.706
|
|
Perceived situational control
|
–
|
|
Sorrows (item 4 excluded)
|
0.949
|
