Parents’ Perspectives on Counseling for Fetal Heart Disease: What Matters Most?
Abstract
:1. Introduction
2. Materials and Methods
3. Results
3.1. Sample Structure and Counseling Success
3.2. Multiple Linear Regression
3.2.1. Overall Counseling Success
- “Little time was lost between a potential cardiac diagnosis and the proper counseling after making the correct diagnosis by a specialist” (temporal aspect); β = 0.135 **, p = 0.006.
- “During the conversation, the topic was explained to me in an easy and understandable way (for example, without technical terms or phrases)” (social aspect); β = 0.249 ***, p = 0.000.
- “I experienced strong support from the physician who conducted the conversation” (social aspect); β = 0.616 ***, p = 0.000.
- The location of the treatment center β = 0.102 *, p = 0.037.
3.2.2. Effects on Subdimensions
Social Factors
Spatiotemporal Factors
Informational Factors
Control Variables
4. Discussion
Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Appendix A
Variable | Expression | Valid % * |
---|---|---|
Gender | Female | 59.3 |
Male | 40.7 | |
Age | Mean value (years) | 34.63 |
Median (years) | 35 | |
SD | 5.404 | |
Permanent relationship | Yes | 90.3 |
No | 9.7 | |
ISCED ** | Low | 6.2 |
Medium | 38.2 | |
High | 55.6 | |
Social status *** | Low | 27.6 |
Medium | 43.3 | |
High | 29.0 | |
German first language | Yes | 83.2 |
No | 16.8 | |
Preexisting medical knowledge | Yes | 31.1 |
No | 68.9 | |
Sorrows **** | Major sorrows | 35.8 |
Intermediate sorrows | 25.0 | |
Low sorrows | 39.3 | |
Location | Location A: centers 1 + 2 | 35.8 |
Location B: centers 3 + 4 | 64.2 | |
Counseling during the COVID-19-pandemic | Yes | 25.2 |
No | 74.8 | |
Gestational age at fetal cardiac diagnosis | Mean value (weeks + days) | 24 + 1 |
Median (weeks + days) | 23 | |
Minimum (weeks + days) | 9 | |
Maximum (weeks + days) | 38 | |
SD (weeks + days) | 6+1 | |
Severity of fetal CHD ***** | Low | 11.6 |
Medium | 31.3 | |
High | 57.1 |
Fetal Cardiac Diagnosis | Genetic or Extra-Cardiac Findings | Number of Cases |
---|---|---|
AVSD | Trisomy 21 | 6 |
AVSD | 5 | |
AVSD, ARSA | Trisomy 21 | 1 |
AVSD, hypoplastic aortic arch, coarctation | 1 | |
AVSD, TOF | Trisomy 21 | 1 |
Coarctation | 5 | |
Coarctation | Turner syndrome | 1 |
Coarctation, ARSA | 1 | |
Suspicion for coarctation, ventricular disproportion | 2 | |
Coarctation, aortic stenosis | 1 | |
Critical aortic stenosis | 2 | |
Critical aortic stenosis, severe mitral regurgitation, coarctation | 1 | |
Aortic stenosis, aortic arch hypoplasia, Perimembranous VSD | 1 | |
Borderline left ventricle, hypoplastic aortic arch, coarctation, LSVC | 1 | |
Critical pulmonary stenosis, severe tricuspid regurgitation | 1 | |
Severe pulmonary stenosis, severe tricuspid regurgitation | 1 | |
DILV, MGA, aortic arch hypoplasia | 1 | |
DILV, MGA, aortic arch hypoplasia, bilateral SVC | 1 | |
DORV | 4 | |
DORV, aortic arch hypoplasia, coarctation | 1 | |
DORV, MGA, right aortic arch, hypoplastic aortic arch, coarctation | 1 | |
DORV, subpulmonary stenosis | 1 | |
DORV, TGA | 1 | |
DORV, TGA, PA | 1 | |
DORV, TGA, subpulmonary stenosis | 1 | |
DORV, TOF type, right aortic arch, MAPCA | 1 | |
Severe Ebstein´s anomaly of the tricuspid valve | 1 | |
Ebstein´s anomaly of the tricuspid valve | 2 | |
Heterotaxy syndrome, AVSD, absent right AV connection, pulmonary stenosis, MGA, bilateral SVCs | Situs inversus abdominalis, asplenia | 1 |
Heterotaxy syndrome, AVSD, pulmonary stenosis, MGA, right aortic arch | 1 | |
Heterotaxy syndrome, dextrocardia, DORV, pulmonary stenosis, MGA | 1 | |
Heterotaxy syndrome, HLHS, TAPVR, azygos continuation | 1 | |
HLHS | 8 | |
HLHS, DORV | 1 | |
HLHS, VSD | 1 | |
Hypoplastic aortic arch | 2 | |
Hypoplastic aortic arch, borderline LV | 1 | |
Hypoplastic aortic arch, coarctation | 2 | |
Hypoplastic aortic arch, perimembranous VSD | 1 | |
Hypoplastic aortic arch, VSD | * MCAD | 1 |
Hypoplastic aortic arch, VSD muscular, PAPVR | 1 | |
IAA, borderline left ventricle | DiGeorge-syndrome | 1 |
IAA, VSD | 1 | |
LAI, dextrocardia, hypoplastic right ventricle, tricuspid atresia, pulmonary stenosis, VSD, MGA | 1 | |
LSVC | 1 | |
LSVC, * ASD | Trisomy 21 | 1 |
* ASD | Trisomy 21 | 1 |
Mild tricuspid regurgitation | 1 | |
Non-compaction cardiomyopathy | 1 | |
PA, IVS | 2 | |
PA, IVS, sinusoids | 1 | |
PA, VSD | 4 | |
PA, VSD, MAPCAs | 1 | |
PA, VSD, TGA | 1 | |
PA/IVS, bipartite right ventricle, right ventricular hypertrophy | 1 | |
Pulmonary stenosis | 1 | |
Right aortic arch | 1 | |
TGA (complex) | 10 | |
TGA (simple) | 8 | |
ccTGA | 2 | |
TOF | Trisomy 21 | 1 |
TOF | 6 | |
TOF, right aortic arch | DiGeorge-syndrome | 1 |
Tricuspid atresia | 2 | |
Tricuspid atresia Ib | 1 | |
Tricuspid valve dysplasia, moderate regurgitation, mild pulmonary stenosis, LSVC | Trisomy 21 | 1 |
Tricuspid valve dysplasia, prenatal duct closure | 1 | |
VSD | renal agenesis | 1 |
VSD | 4 | |
VSD | * Reciprocal translocation chromosome 1 and 7; deletions: 1q43 and 7p15.3–p21.1 | 1 |
VSD | * Cystic fibrosis | 1 |
VSD, hypoplastic aortic arch, coarctation, LSVC | 1 | |
VSD, inlet | 1 | |
VSD, muscular | 1 | |
VSD, perimembranous | 1 |
Counseling Success: | |||
---|---|---|---|
Successful * | Satisfying * | Unsuccessful * | |
(a) Overall counseling success: | 47.5% | 52% | 0.5% |
(b) Subdimensions: | |||
Transfer of medical knowledge | 49.1% | 49.5% | 1.4% |
Trust in medical staff | 72.8% | 24.4% | 2.8% |
Transparency regarding the treatment process | 63.8% | 35.3% | 0.9% |
Coping resources | 50.5% | 45.0% | 4.6% |
Perceived situational control | 45.7% | 32.6% | 21.7% |
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1. Transfer of Medical Knowledge (sum-score range = 5 to 25; α = 0.798, good) |
|
2. Transparency regarding the Treatment Process (sum-score range = 4 to 20; α = 0.808, very good) |
|
3. Trust in Medical Staff (sum-score range = 3 to 15; α = 0.811, very good) |
|
4. Perceived Situational Control (sum-score range = 1 to 5, α not applicable as only one item) |
|
5. Coping Resources (sum-score range = 3 to 15, α = 0.743, good) |
|
Overall Counseling Success | Trust in Medical Staff | Transfer of Medical Knowledge | Coping Resources | Transparency Regarding the Treatment Process | Perceived Situational Control | |
---|---|---|---|---|---|---|
Social Factors | ||||||
Interpersonal support by the physician during counseling | 0.616 *** | 0.670 *** | 0.288 *** | 0.567 *** | 0.462 *** | 0.317 *** |
Frequent interruptions of the counseling by the physician | n.s. | n.s. | n.s. | n.s. | −0.223 *** | n.s. |
Counseling in easy-to-understand terms | 0.249 *** | n.s. | 0.374 *** | 0.160 ** | 0.129 * | n.s. |
Spatiotemporal Factors | ||||||
Short period of time between suspected diagnosis and counseling | 0.135 ** | n.s. | n.s. | 0.149 ** | 0.150 ** | n.s. |
No appropriate room during the consultation | n.s. | −0.119 * | n.s. | n.s. | n.s. | n.s. |
Informational Factors | ||||||
Information materials received | n.s. | n.s. | n.s. | n.s. | n.s. | n.s. |
Unfulfilled need to receive information material | n.s. | n.s. | −0.253 *** | n.s. | n.s. | n.s. |
Information materials helped to answer upcoming questions independently | n.s. | n.s. | n.s. | n.s. | 0.157 ** | n.s. |
Information how to obtain psychological support received | n.s. | n.s. | n.s. | n.s. | n.s. | n.s. |
Control Variables | ||||||
Age | n.s. | n.s. | n.s. | n.s. | n.s. | 0.166 * |
First language German | n.s. | 0.131 * | n.s. | n.s. | n.s. | n.s. |
Gender | n.s. | n.s. | n.s. | n.s. | n.s. | n.s. |
Sorrows | n.s. | n.s. | n.s. | n.s. | n.s. | n.s. |
Permanent relationship | n.s. | n.s. | n.s. | n.s. | n.s. | n.s. |
Social status | n.s. | n.s. | n.s. | n.s. | n.s. | n.s. |
ISCED + | n.s. | n.s. | n.s. | n.s. | n.s. | n.s. |
Pre-existing medical knowledge | n.s. | n.s. | n.s. | n.s. | n.s. | n.s. |
Severity of fetal CHD ++ | n.s. | n.s. | n.s. | 0.132 * | n.s. | n.s. |
Location | 0.102 * | 0.112 * | n.s. | n.s. | 0.103 * | n.s. |
Counseling during COVID-19 | n.s. | n.s. | n.s. | n.s. | n.s. | n.s. |
Corrected R2 | 0.557 | 0.478 | 0.410 | 0.462 | 0.384 | 0.141 |
n +++ | 191 | 208 | 213 | 206 | 187 | 218 |
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Kovacevic, A.; Wacker-Gussmann, A.; Bär, S.; Elsässer, M.; Mohammadi Motlagh, A.; Ostermayer, E.; Oberhoffer-Fritz, R.; Ewert, P.; Gorenflo, M.; Starystach, S. Parents’ Perspectives on Counseling for Fetal Heart Disease: What Matters Most? J. Clin. Med. 2022, 11, 278. https://doi.org/10.3390/jcm11010278
Kovacevic A, Wacker-Gussmann A, Bär S, Elsässer M, Mohammadi Motlagh A, Ostermayer E, Oberhoffer-Fritz R, Ewert P, Gorenflo M, Starystach S. Parents’ Perspectives on Counseling for Fetal Heart Disease: What Matters Most? Journal of Clinical Medicine. 2022; 11(1):278. https://doi.org/10.3390/jcm11010278
Chicago/Turabian StyleKovacevic, Alexander, Annette Wacker-Gussmann, Stefan Bär, Michael Elsässer, Aida Mohammadi Motlagh, Eva Ostermayer, Renate Oberhoffer-Fritz, Peter Ewert, Matthias Gorenflo, and Sebastian Starystach. 2022. "Parents’ Perspectives on Counseling for Fetal Heart Disease: What Matters Most?" Journal of Clinical Medicine 11, no. 1: 278. https://doi.org/10.3390/jcm11010278