Does Educational Status Influence Parents’ Response to Bad News in the NICU?
Abstract
:1. Introduction
2. Materials and Methods
2.1. Ethics
2.2. Participants and Procedure
2.3. Demographic Characteristics
2.4. Parental Mental Condition, Self-Efficacy, and Trust as well as Certain Aspects of BBN
2.5. Data Analysis
3. Results
3.1. Sample and Demographic Data
3.2. Mental Condition after the Delivery of Bad News
3.3. Stress, Self-Efficacy, Helplessness, and Life Satisfaction
3.4. Certain Aspects of the BBN Conversation and Trust in Physicians
3.5. Correlation of Safety, Orientation, Certain Characteristics of the BBN Conversation, and Trust in Physicians
4. Discussion
- Limit medical jargon in BBN conversations wherever possible and use plain ‘everyday’ language.
- Actively encourage parents to ask questions (i.e., “For many parents questions arise in such a situation. What are yours?”), especially lower-educated parents.
- Focus more on addressing emotions among lower-educated parents and especially convey hope, e.g., by creating a future perspective.
- In contrast, among higher-educated parents, focus more on explanations and their understanding of the content
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Appendix A
Number of Items | Scaling | |
---|---|---|
Demographic variables | 22 items | Yes/No/selection of various alternatives |
Parents’ experiences with BBN | ||
Informative items of consultation | 7 items | Yes/No/selection of various alternatives |
Singular statements corresponding to ‘safety’/‘orientation’ | 4 items | 1–4 Likert scale |
Self-reported psychological instruments | ||
Condition after BBN consultation | 5 items | 1–4 Likert scale |
PHQ-4 depression | 2 items | 0–3 Likert scale |
PHQ-4 anxiety | 2 items | 0–3 Likert scale |
PSS-10 perceived self-efficacy | 4 items | 0–4 Likert scale (inverted) |
PSS-10 perceived helplessness | 6 items | 0–4 Likert scale |
Satisfaction with physical and mental well-being | 1 item | 1–4 Likert scale |
Perceived stress caused by situation/emotional burden | 1 item | 0–10 Likert scale |
Overall self-estimation of self-efficacy | 4 items | 1–4 Likert scale |
Aspects of BBN conversation | ||
‘Safety’ | 9 items | 1–4 Likert scale |
‘Orientation’ | 8 item | 1-4 Likert scale |
Relationship with physicians (trust) | 1 item | 0-10 Likert scale |
Items | Scaling |
---|---|
Well-being and condition first few days after BBN | |
In the first few days after the first BBN conversation… … I had trouble sleeping …I worried a lot about the future …I had difficulty concentrating …I felt exhausted …I was hopelessly | 1: entirely, 2: pretty much, 3: a little, 4: not at all |
Current satisfaction with physical and mental well-being after BBN | |
How satisfied are you with your physical and mental well-being? | 1: entirely, 2: pretty much, 3: a little, 4: not at all |
Current perceived stress caused by situation/emotional burden | |
Please tick on the scale how much you feel burdened by the problematic situation | 0: not at all, 10: extremely |
Overall self-estimation of self-efficacy | |
How much do you agree with the following statement? I am not afraid because of my baby’s illness/disability I can integrate the problematic situation of my baby well into my life I am satisfied with the course of my baby’s illness/disability I am coping well overall with my baby’s illness/disability | 1: entirely, 2: pretty much, 3: a little, 4: not at all |
Current relationship with physicians | |
Please tick on the scale how much trust you have in the physicians treating your baby | 0: not at all, 10: very much |
Items ‘Safety’ | n | M | SD | α If Item Excluded |
Physician conveyed safety in the conversation in that he/she… | ||||
…appeared competent (1) | 44 | 1.52 | 0.849 | 0.915 |
…seemed to handle the situation/be up to the situation (2) | 44 | 1.41 | 0.757 | 0.924 |
…showed understanding (3) | 44 | 1.75 | 0.918 | 0.915 |
…radiated calmness (4) | 44 | 1.66 | 0.861 | 0.930 |
…transported knowledge and overview to me (5) | 44 | 1.89 | 0.813 | 0.915 |
…gave me information about the expected course of the disease/impairment (6) | 44 | 2.34 | 1.098 | 0.934 |
…behaved friendly and compassionate (7) | 44 | 1.61 | 0.920 | 0.913 |
…seemed honest and open (8) | 44 | 1.52 | 0.849 | 0.914 |
…transported care for my baby and us as parents (9) | 44 | 1.84 | 0.861 | 0.915 |
αa | 44 | 0.928 | ||
Items ‘orientation’ | n | M | SD | α if item excluded |
Physician conveyed orientation in the conversation in that he/she… | ||||
…asked for my state of knowledge at the beginning of the conversation b (1) | 41 | 2.66 | 1.039 | 0.859 |
…provided as clear time specifications as possible (2) | 41 | 2.83 | 0.972 | 0.850 |
…used x-rays, monitors, drawings, or other aids for better understanding (3) | 41 | 2.98 | 1.084 | 0.845 |
…gave information on the development of the disease (4) | 41 | 2.71 | 1.123 | 0.845 |
…informed as concretely as possible about the next therapy steps (5) | 41 | 2.17 | 1.116 | 0.806 |
…justified the recommended therapy steps (6) | 41 | 2.34 | 1.196 | 0.811 |
…gave information about possible effects on the development of my baby (7) | 41 | 2.44 | 1.074 | 0.830 |
…responded to me and my questions (8) | 41 | 1.76 | 0.888 | 0.832 |
α a | 41 | 0.853 |
References
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Test Statistics | ||||||||||
---|---|---|---|---|---|---|---|---|---|---|
1: Lower Secondary Education or Less a | 2: Upper Secondary Education or More a | χ2 (1) b | p-Value | Phi | U | Z | p-Value c | |||
n | % | n | % | |||||||
Parental characteristics | 23 | 43 | 31 | 57 | ||||||
Age (years) (md (25th/75th p.) | 32 (29/35) | 34 (32/36) | 251.00 | −1.843 | 0.065 | |||||
20–29 | 7 | 30 | 4 | 13 | ||||||
30–39 | 15 | 65 | 24 | 77 | ||||||
40–49 | 0 | 0 | 3 | 10 | ||||||
50–59 | 1 | 5 | 0 | 0 | ||||||
Sex | FeT d | 0.717 | 0.084 | |||||||
Father | 3 | 13 | 6 | 19 | ||||||
Mother | 20 | 87 | 25 | 81 | ||||||
Marital Status | FeT d | 0.569 | 0.118 | |||||||
Single | 2 | 9 | 1 | 3 | ||||||
Married/living with partner | 21 | 91 | 30 | 97 | ||||||
Citizenship | FeT d | 0.380 | 0.146 | |||||||
German | 22 | 96 | 27 | 87 | ||||||
Other | 1 | 4 | 4 | 13 | ||||||
Pregnancy and delivery | ||||||||||
Artificial fertilization (not specified) | 4 | 17 | 2 (1) | 7 (3) | FeT d | 0.385 | 0.146 | |||
Antenatal fetal problems (not specified) | 6 | 26 | 4 (2) | 13 (7) | FeT d | 0.307 | 0.155 | |||
Twin pregnancy (not specified) | 2 | 9 | 6 (1) | 19 (3) | FeT d | 0.443 | 0.195 | |||
Complication during pregnancy (not specified) | 10 | 44 | 16 (1) | 52 (3) | 0.506 | 0.477/0.583 | 0.098 | |||
Complication during delivery (not specified) | 4 (2) | 19 (9) | 8 (2) | 26 (7) | FeT d | 0.517 | 0.110 | |||
Gestational age (GA) at time of birth | ||||||||||
GA (weeks (25th/75th p.)) | 33.5 (24.8/37.3) | 30.0 (26.0/39.5) | 303.0 | −0.098 | 0.922 | |||||
≤27+6 (very early preterm) | 9 | 39 | 13 | 42 | ||||||
28+0–31+6 (early preterm) | 0 | 0 | 3 | 10 | ||||||
32–36+6 (preterm) | 3 | 13 | 3 | 10 | ||||||
>37+0 (mature born) | 10 | 43 | 9 | 29 | ||||||
Not specified | 1 | 4 | 3 | 10 | ||||||
Condition of infant at time of answering the questionnaire according to parental estimation | 341.5 | −0.301 | 0.727 | |||||||
Very well/well | 19 | 83 | 22 | 71 | ||||||
Moderate | 3 | 13 | 5 | 16 | ||||||
Child died | 0 | 0 | 2 | 7 | ||||||
Not specified | 1 | 4 | 2 | 7 | ||||||
Parents’ self-estimated prognosis at time of answering the questionnaire | 344.5 | −0.443 | 0.684 | |||||||
Very well/well | 17 | 74 | 24 | 77 | ||||||
Moderate/bad | 5 | 22 | 4 | 13 | ||||||
Not specified | 1 | 4 | 3 | 10 |
Scale/Item | Scale | MD/% b | Min;Max | Test Statistics | |||||
---|---|---|---|---|---|---|---|---|---|
Range | Group a | n | (Mean) | (sd) | U | Z c | p | d d | |
Sum well-being and condition first few days after BBN low values = good well-being | 5–20 | 1 | 23 | 16.00 | 6;20 | 325.50 | −0.545 | 0.586 | 0.138 |
2 | 31 | 14.00 | 5;20 | ||||||
PHQ-4 depression low values = no depressive symptoms | 0–6 | 1 | 21 | 19% b | 0;4 | 301.00 | −0.273 | 0.785 | 0.012 |
2 | 30 | 20% b | 0;6 | ||||||
PHQ-4 anxiety low values = no symptoms of anxiety | 0–6 | 1 | 21 | 28.6% b | 0;4 | 293.50 | −0.010 | 0.992 | −0.088 |
2 | 28 | 21.4% b | 0;6 | ||||||
PSS-10 perceived self-efficacy low values = high self-efficacy | 0–16 | 1 | 21 | 8.00 (7.43) | 1;12 (2.749) | 263.00 | −0.630 | 0.529 | 0.288 |
2 | 28 | 6.00 (6.68) | 0;13 (3.642) | ||||||
PSS-10 perceived helplessness low values = little helplessness | 0–24 | 1 | 21 | 13.00 (13.67 e) | 8;22 (3.864) | 276.00 | −0.365 | 0.715 | −0.141 |
2 | 28 | 14.50 (14.36 e) | 4;24 (5.539) | ||||||
Current satisfaction with physical and mental well-being low values = high satisfaction with well-being | 1–4 | 1 | 20 | 2.50 | 1;4 | 238.50 | −0.749 | 0.454 | 0.181 |
2 | 27 | 2.00 | 1;4 | ||||||
Current self-estimated stress caused by situation/emotional burden low values = no stress | 0–10 | 1 | 22 | 5.00 | 1;10 | 325.00 | −0.093 | 0.926 | 0.026 |
2 | 30 | 5.50 | 1;10 | ||||||
Sum overall self-estimation of self-efficacy low values = high self-efficay | 4–16 | 1 | 22 | 9.00 | 5;12 | 315.00 | −0.077 | 0.939 | −0.009 |
2 | 29 | 8.00 | 4;12 |
Scale/Item | Scale | MD | Min;Max | Test Statistics | |||||
---|---|---|---|---|---|---|---|---|---|
Certain Aspects of BBN Conversation | Range | Group a | n | U | Z b | p | d c | ||
‘I understood all explanations’ (orientation) d | 1–4 | 1 | 23 | 2.00 | 1;4 | 302.00 | −1.044 | 0.296 | 0.296 |
2 | 31 | 1.00 | 1;4 | ||||||
‘I had sufficient opportunity for questions’ (orientation) d | 1–4 | 1 | 22 | 1.50 | 1;4 | 238.00 | −1.858 | 0.063 | 0.331 |
2 | 29 | 1.00 | 1;4 | ||||||
‘Physician transported hope’ (safety) d | 1–4 | 1 | 21 | 2.00 | 1;4 | 211.00 | −1.760 | 0.078 | 0.562 |
2 | 28 | 2.00 | 1;4 | ||||||
‘Physician gave me safety’ (safety) d | 1–4 | 1 | 21 | 3.00 | 1;4 | 190.00 | −2.188 | 0.029 * | 0.654 |
2 | 28 | 2.00 | 1;4 | ||||||
Sum ‘safety’ low values = physicians conveyed a lot of safety | 9–36 | 1 | 21 | 15.00 | 9;35 | 196.50 | −2.136 | 0.033 * | 0.513 |
2 | 29 | 13.00 | 9;33 | ||||||
Sum ‘orientation’ e low values = physicians gave a lot of orientation | 7–28 | 1 | 19 | 18.00 | 8;27 | 201.50 | −1.402 | 0.161 | 0.399 |
2 | 28 | 14.50 | 7;27 | ||||||
Relationship with physicians (trust) low values = a lot of trust | 0–10 | 1 | 23 | 2.00 | 0;9 | 244.50 | −2.035 | 0.042 * | 0.598 |
2 | 31 | 1.00 | 0;6 |
Understanding | Asking Questions | Hope | Item Safety | Sum ‘Safety’ | Sum ‘Orientation’ | ||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Group a | 1 | 2 | 1 | 2 | 1 | 2 | 1 | 2 | 1 | 2 | 1 | 2 | |
Asking questions | R b (N) | 0.321 (22) | 0.373 * (29) | __ | __ | __ | __ | __ | __ | __ | __ | __ | __ |
Zc (p d) | −0.196 (0.845) | ||||||||||||
Hope | R b (N) | 0.048 (21) | −0.005 (28) | 0.588 ** (21) | 0.171 (28) | __ | __ | __ | __ | __ | __ | __ | __ |
Z c (p d) | 0.1716 (0.864) | 1.6237 (0.104) | |||||||||||
Item safety | R b (N) | 0.074 (21) | 0.467 * (28) | 0.560 ** (21) | 0.579 ** (28) | 0.763 ** (21) | 0.208 (28) | __ | __ | __ | __ | __ | __ |
Z c (p d) | −1.3978 (0.162) | −0.0910 (0.928) | 2.5630 (0.01 **) | ||||||||||
Sum ‘safety’ | R b (N) | 0.286 (21) | 0.140 (29) | 0.603 ** (21) | 0.390 * (29) | 0.598 ** (20) | 0.194 (28) | 0.702 ** (20) | 0.710 ** (28) | __ | __ | __ | __ |
Z c (p d) | 0.4999 (0.617) | 0.9329 (0.351) | 1.5700 (0.116) | −0.0507 (0.960) | |||||||||
Sum ‘orientation’ | R b (N) | 0.493 * (19) | 0.172 (28) | 0.820 ** (19) | 0.508 ** (28) | 0.492 * (18) | 0.222 (27) | 0.659 ** (18) | 0.683 ** (27) | 0.784 ** (19) | 0.848 ** (28) | __ | __ |
Z c (p d) | 1.1441 (0.253) | 1.8640 (0.062) | 0.9508 (0.342) | 0.1716 (0.864) | −0.1327 (0.894) | ||||||||
Relation (Trust) | R b (N) | −0.036 (23) | 0.493 ** (31) | 0.175 (22) | 0.344 (29) | 0.130 (21) | −0.081 (28) | 0.198 (21) | 0.715 ** (28) | 0.125 (21) | 0.583 ** (29) | 0.187 (19) | 0.584 ** (28) |
Z c (p d) | −1.9675 (0.049 *) | −0.6024 (0.547) | 0.6856 (0.493) | −2.2538 (0.024 *) | −1.7655 (0.077) | −1.4970 (0.134) |
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Wege, M.; von Blanckenburg, P.; Maier, R.F.; Seifart, C. Does Educational Status Influence Parents’ Response to Bad News in the NICU? Children 2023, 10, 1729. https://doi.org/10.3390/children10111729
Wege M, von Blanckenburg P, Maier RF, Seifart C. Does Educational Status Influence Parents’ Response to Bad News in the NICU? Children. 2023; 10(11):1729. https://doi.org/10.3390/children10111729
Chicago/Turabian StyleWege, Mirjam, Pia von Blanckenburg, Rolf Felix Maier, and Carola Seifart. 2023. "Does Educational Status Influence Parents’ Response to Bad News in the NICU?" Children 10, no. 11: 1729. https://doi.org/10.3390/children10111729
APA StyleWege, M., von Blanckenburg, P., Maier, R. F., & Seifart, C. (2023). Does Educational Status Influence Parents’ Response to Bad News in the NICU? Children, 10(11), 1729. https://doi.org/10.3390/children10111729