Quality of Life and Stress-Related Psychological Distress Among Families Caring for Children with Cardiac Malformations Under Conservative Treatment: A Cross-Sectional Study Using the 36-Item Short Form Health Survey, the Perceived Stress Scale, and the Parental Burnout Assessment Scale
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design and Ethical Considerations
2.2. Measures and Instruments
2.3. Data Collection and Management
2.4. Statistical Analysis
3. Results
4. Discussion
4.1. Literature Findings
4.2. Study Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Variable | Value |
---|---|
Caregivers (n) | 78 |
Caregiver Age, years (median, IQR) | 36 (30–42) |
Caregiver Gender | 56 females (71.8%), 22 males (28.2%) |
Education | High school: 31 (39.7%) |
Higher education: 47 (60.3%) | |
Child Age, months (median, IQR) | 6.0 (5.5–6.5) * |
Child Gender | 34 females (43.6%), 44 males (56.4%) |
Malformation Severity | Mild: 24 (30.8%) |
Moderate: 38 (48.7%) | |
Severe: 16 (20.5%) | |
Employment Status | Employed: 52 (66.7%) |
Unemployed: 26 (33.3%) | |
Types of Cardiac Malformations | Patent ductus arteriosus: 14 (17.9%) |
Ventricular septal defect: 20 (25.6%) | |
Atrial septal defect: 16 (20.5%) | |
Coarctation of the aorta: 12 (15.4%) | |
Tetralogy of Fallot: 10 (12.8%) | |
Pulmonary stenosis: 6 (7.7%) |
SF-36 Domain | Baseline Mean (SD) | 6-Month Mean (SD) | p-Value |
---|---|---|---|
Physical Functioning | 62.3 (12.4) | 66.7 (12.9) | 0.034 |
Physical Role | 54.8 (14.1) | 58.2 (14.7) | 0.091 |
Bodily Pain | 61.9 (13.0) | 65.1 (13.3) | 0.084 |
General Health | 58.7 (12.8) | 62.8 (13.9) | 0.044 |
Vitality | 59.1 (10.6) | 63.2 (11.7) | 0.028 |
Social Functioning | 64.6 (11.7) | 67.3 (12.6) | 0.108 |
Emotional Role | 56.2 (13.2) | 59.4 (13.8) | 0.074 |
Mental Health | 60.8 (12.0) | 64.2 (12.6) | 0.036 |
Physical Component Summary | 59.7 (11.7) | 63.5 (12.1) | 0.026 |
Mental Component Summary | 58.3 (12.3) | 61.5 (13.1) | 0.056 |
PSS Item | Baseline Mean (SD) | 6-Month Mean (SD) | p-Value |
---|---|---|---|
Total PSS (0–40 scale) | 22.9 (6.2) | 20.4 (5.9) | 0.012 |
PBA Domain | Baseline Mean (SD) | 6-Month Mean (SD) | p-Value |
---|---|---|---|
Exhaustion in Parenting | 15.2 (3.1) | 13.9 (2.9) | 0.021 |
Emotional Distancing | 14.1 (3.5) | 12.8 (3.2) | 0.009 |
Loss of Parental Fulfillment | 15.6 (3.4) | 13.4 (3.3) | 0.004 |
Total PBA | 44.9 (8.5) | 40.1 (8.0) | 0.003 |
Variable | PCS | MCS | PSS | PBA |
---|---|---|---|---|
PCS (SF-36) | 1 | 0.52 * | −0.46 * | −0.40 * |
MCS (SF-36) | 0.52 * | 1 | −0.58 * | −0.52 * |
PSS | −0.46 * | −0.58 * | 1 | 0.60 * |
PBA (Total) | −0.40 * | −0.52 * | 0.60 * | 1 |
n | ΔSF-36 PCS (Mean ± SD) | ΔPSS (Mean ± SD) | ΔPBA (Mean ± SD) | p-Value PCS | p-Value PSS | p-Value PBA | |
---|---|---|---|---|---|---|---|
Mild Malformation, Female Caregivers | 12 | +4.5 (3.6) | −2.8 (2.6) | −5.0 (5.3) | 0.04 | 0.019 | 0.01 |
Mild Malformation, Male Caregivers | 12 | +4.1 (3.8) | −2.6 (2.4) | −4.8 (5.1) | 0.05 | 0.025 | 0.012 |
Moderate Malformation, Female Caregivers | 19 | +3.3 (3.4) | −2.2 (2.3) | −4.3 (4.7) | 0.042 | 0.034 | 0.026 |
Moderate Malformation, Male Caregivers | 19 | +3.1 (3.6) | −2.0 (2.5) | −4.1 (4.5) | 0.049 | 0.04 | 0.029 |
Severe Malformation, Female Caregivers | 8 | +2.5 (3.1) | −1.7 (2.2) | −3.1 (4.2) | 0.085 | 0.074 | 0.062 |
Severe Malformation, Male Caregivers | 8 | +2.3 (3.3) | −1.5 (2.4) | −2.9 (3.9) | 0.097 | 0.083 | 0.07 |
Female Caregivers (All Severities) | 56 | +3.8 (3.5) | −2.5 (2.4) | −4.2 (4.5) | 0.031 | 0.014 | 0.008 |
Male Caregivers (All Severities) | 22 | +2.7 (3.0) | −1.9 (2.2) | −3.1 (4.0) | 0.084 | 0.056 | 0.049 |
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Dumitru, A.I.; Dima, M.; Boia, M. Quality of Life and Stress-Related Psychological Distress Among Families Caring for Children with Cardiac Malformations Under Conservative Treatment: A Cross-Sectional Study Using the 36-Item Short Form Health Survey, the Perceived Stress Scale, and the Parental Burnout Assessment Scale. Diseases 2025, 13, 95. https://doi.org/10.3390/diseases13040095
Dumitru AI, Dima M, Boia M. Quality of Life and Stress-Related Psychological Distress Among Families Caring for Children with Cardiac Malformations Under Conservative Treatment: A Cross-Sectional Study Using the 36-Item Short Form Health Survey, the Perceived Stress Scale, and the Parental Burnout Assessment Scale. Diseases. 2025; 13(4):95. https://doi.org/10.3390/diseases13040095
Chicago/Turabian StyleDumitru, Andrada Ioana, Mirabela Dima, and Marioara Boia. 2025. "Quality of Life and Stress-Related Psychological Distress Among Families Caring for Children with Cardiac Malformations Under Conservative Treatment: A Cross-Sectional Study Using the 36-Item Short Form Health Survey, the Perceived Stress Scale, and the Parental Burnout Assessment Scale" Diseases 13, no. 4: 95. https://doi.org/10.3390/diseases13040095
APA StyleDumitru, A. I., Dima, M., & Boia, M. (2025). Quality of Life and Stress-Related Psychological Distress Among Families Caring for Children with Cardiac Malformations Under Conservative Treatment: A Cross-Sectional Study Using the 36-Item Short Form Health Survey, the Perceived Stress Scale, and the Parental Burnout Assessment Scale. Diseases, 13(4), 95. https://doi.org/10.3390/diseases13040095