Background
Methods
Aims
Participants
Enrolment and group composition
Procedures
Instruments
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Nationality, age and level of education of the parents
-
Gestational age, Apgar score at 1 and 5 min, body weight at birth, body weight at admission to the NICU and at 60 days after admission, length of stay and pathologies
-
Knowledge and Understanding (3 items) - satisfaction related to adequate and timely information about the baby’s condition
-
Communication and Collaboration (3 items) - satisfaction with communication and collaboration with the healthcare team
-
Privacy and Confidentiality (3 items) - satisfaction with respect of patient privacy
-
Parental Role Alteration (8 items) - stress related to the alteration in the parental role because of the difficulty of taking care of their infants
-
Infant Appearance (8 items) - stress related to infants’ appearance and behaviour
-
Sight and Sound (6 items) - stress related to the NICU physical environment
Statistical analysis
Results
Characteristics of neonates and parents at baseline
Total | FCC | NFCC |
P-value | ||
---|---|---|---|---|---|
Mean (±SD) | Mean (±SD) | ||||
Parents | Nationality, Italiana
| 96 | 50% | 50% |
p > 0.05 |
Age | 96 | 34.81 (4.91) | 35.65 (5.39) |
p > 0.05 | |
Primary schoola
| 96 | 4% | 2% |
p > 0.05 | |
Lower secondary schoola
| 25% | 33% | |||
High schoola
| 48% | 48% | |||
University degreea
| 23% | 17% | |||
Newborns | Gestational age at birth, weeks | 48 | 32.7 (5.25) | 34.2 (5.25) |
p > 0.05 |
Apgar score, 1 min | 48 | 5.41 (1.95) | 6.37 (1.52) |
p > 0.05 | |
Apgar score, 5 min | 48 | 7.75 (0.67) | 8.08 (0.88) |
p > 0.05 | |
Birth weight, g | 48 | 1,719.4 (865.3) | 1,975.4 (732.4) |
p > 0.05 | |
Body weight at admission, g | 48 | 2,086.9 (887.6) | 1,961.7 (758.7) |
p > 0.05 | |
Oesophageal atresiaa
| 48 | 46% | 54% |
p > 0.05 | |
Post-haemorrhagic hydrocephalusa
| 37% | 29% | |||
Diaphragmatic herniaa
| 17% | 17% | |||
Length of stay, days | 48 | 86.58 (60.73) | 89.71 (48.1) |
p > 0.05 |
Family survey data
FCC | NFCC |
p_value | ||
---|---|---|---|---|
Knowledge and understanding | Median (5°–95°) | Median (5°–95°) | ||
I have received adequate information about my baby’s condition and management. | 5 (3,45–5) | 4 (3–5) | <0,05 | |
The health care team explained things thoroughly using easy to understand language. | 5 (4–5) | 4 (3,45–5) | <0,05 | |
The information I have received has been appropriate and timely. | 5 (3,45–5) | 3 (2–4) | <0,05 | |
Communication and collaboration | ||||
In the last week I have been able to communicate effectively with my baby’s health care team. | 5 (4–5) | 4 (3–5) | <0,05 | |
In the last week I have collaborated with my baby’s health care team in the planning of care for my baby. | 5 (4–5) | 1 (1–2) | <0,05 | |
In the last week I have been able to ask the health care team questions about my baby’s care. | 5 (4–5) | 4 (3–5) | >0,05 | |
Privacy and confidentiality | ||||
In the last week the privacy of my baby’s care was always considered and upheld | 5 (4–5) | 5 (3,45–5) | <0,05 | |
In the last week the confidentiality of my baby’s care was always considered and upheld | 5 (4–5) | 5 (3,45–5) | <0,05 | |
In the last week I have overheard information about other babies | 1 (1–2) | 1 (1–3) | >0,05 | |
PSS: NICU | ||||
Parental role alteration | Being separated from your baby | 5 (4–5) | 5 (4–5) | <0,05 |
Not being able to regularly care for your baby (e.g., feed, nappy, hold) | 4 (2–4,55) | 5 (4–5) | <0,05 | |
Not having a chance to be alone with your baby | 3 (1–4) | 5 (3,45–5) | <0,05 | |
Not being able to share your baby with family and friends | 4 (2–4,55) | 5 (3–5) | <0,05 | |
Not being able to protect your baby from pain and painful procedures | 5 (4–5) | 5 (4–5) | >0,05 | |
Not being able to comfort or help your baby | 5 (4–5) | 5 (4–5) | >0,05 | |
The nurses and other staff seeming closer to the baby than you are | 2 (1–3) | 4 (2,45–5) | <0,05 | |
Not being able to hold your baby | 4 (2–4,55) | 5 (3–5) | <0,05 | |
Infant appearance | Seeing your baby with tubes or IV lines in him/her | 4 (2,45–5) | 5 (4–5) | <0,05 |
Seeing your child in pain | 5 (4–5) | 5 (4–5) | >0,05 | |
Having your child look afraid, be upset or cry a lot | 5 (3–5) | 5 (4–5) | <0,05 | |
Seeing your baby look sad | 4 (3,45–5) | 5 (4–5) | <0,05 | |
Seeing a needle or tube put in your baby | 4 (2,45–5) | 5 (4–5) | <0,05 | |
Seeing your baby have problems breathing | 4 (1–5) | 5 (4–5) | <0,05 | |
Seeing your baby surrounded by machinery and having medical treatments | 3 (1–4) | 5 (4–5) | <0,05 | |
When your baby can’t respond to you | 1 | 1 | >0,05 | |
Sight and sound | Monitors and equipment in the room | 3 (2–4) | 5 (2,45–5) | <0,05 |
The sudden sound of monitor alarms | 3 (1–4) | 4 (1,45–4,55) | <0,05 | |
The other sick children in the room | 3 (1–3) | 3 (1–3) | <0,05 | |
The large number of nurses, doctors, and other staff who work with your child | 1 (1,45–4) | 1 (1–5) | >0,05 | |
When other children in the hospital have a crisis | 4 (1–3,55) | 4 (1–4) | >0,05 | |
The needs of other parents in the hospital | 1 (1–3,55) | 2 (1–4) | <0,05 |
FCC | NFCC | ||||||
---|---|---|---|---|---|---|---|
Median (5°–95°) | p_value | Median (5°–95°) |
p_value | ||||
Mother | Father | Mother | Father | ||||
Knowledge and understanding | |||||||
I have received adequate information about my baby’s condition and management. | 5 (3–5) | 5 (3–5) |
p > 0,05 | 4 (3–5) | 4 (3–5) |
p > 0,05 | |
The health care team explained things thoroughly using easy to understand language. | 5 (4–5) | 5 (4–5) |
p > 0,05 | 4 (3,25–5) | 4 (3,25–5) |
p > 0,05 | |
The information I have received has been appropriate and timely. | 5 (3–5) | 5 (3–5) |
p > 0,05 | 3 (2–4) | 3 (2–4) |
p > 0,05 | |
Communication and collaboration | |||||||
In the last week I have been able to communicate effectively with my baby’s health care team. | 5 (4–5) | 5 (3,25–5) |
p > 0,05 | 4 (3–5) | 4 (3–5) |
p > 0,05 | |
In the last week I have collaborated with my baby’s health care team in the planning of care for my baby. | 5 (4–5) | 5 (4–5) |
p > 0,05 | 1 (1–2) | 1 (1–2) |
p > 0,05 | |
In the last week I have been able to ask the health care team questions about my baby’s care. | 5 (4–5) | 5 (4–5) |
p > 0,05 | 4 (3–5) | 4 (3–5) |
p > 0,05 | |
Privacy and confidentiality | |||||||
In the last week the privacy of my baby’s care was always considered and upheld | 5 (4–5) | 5 (4–5) |
p > 0,05 | 4,5 (3,25–5) | 5 (3,25–5) |
p > 0,05 | |
In the last week the confidentiality of my baby’s care was always considered and upheld | 5 (4–5) | 5 (4–5) |
p > 0,05 | 5 (3,25–5) | 4,5 (3,25–5) |
p > 0,05 | |
In the last week I have overheard information about other babies | 1 (1–2) | 1 (1–2) |
p > 0,05 | 1 (1–4,5) | 1 (1–3) |
p > 0,05 | |
PSS: NICU | |||||||
Parental role alteration | Being separated from your baby | 5 (4–5) | 5 (4–5) |
p > 0,05 | 5 | 5 (4–5) |
p < 0,05 |
Not being able to regularly care for your baby (e.g., feed, nappy, hold) | 4 (2–4,75) | 4 (2–4,75) |
p > 0,05 | 5 | 5 (3,25–5) |
p < 0,05 | |
Not having a chance to be alone with your baby | 3 (1–4) | 3 (1–4) |
p > 0,05 | 5 (3,25–5) | 5 (3,25–5) |
p > 0,05 | |
Not being able to share your baby with family and friends | 4 (2–4,75) | 4 (2–4,75) |
p > 0,05 | 5 (3–5) | 4,5 (3–5) |
p > 0,05 | |
Not being able to protect your baby from pain and painful procedures | 5 (4–5) | 5 (4–5) |
p > 0,05 | 5 (4–5) | 5 (4–5) |
p > 0,05 | |
Not being able to comfort or help your baby | 5 (4–5) | 5 (4–5) |
p > 0,05 | 5 (4–5) | 5 (4–5) |
p > 0,05 | |
The nurses and other staff seeming closer to the baby than you are | 1,5 (1–3) | 1,5 (1–3) |
p > 0,05 | 4 (2,25–5) | 4 (2,25–5) |
p > 0,05 | |
Not being able to hold your baby | 4 (2–4,75) | 4 (2–4,75) |
p > 0,05 | 5 (3,25–5) | 5 (3–5) |
p > 0,05 | |
Infant appearance | Seeing your baby with tubes or IV lines in him/her | 4 (2,25–5) | 4 (2,25–5) |
p > 0,05 | 5 (4–5) | 5 (4–5) |
p < 0,05 |
Seeing your child in pain | 5 (4–5) | 5 (4–5) |
p > 0,05 | 5 (4–5) | 5 (4–5) |
p > 0,05 | |
Having your child look afraid, be upset or cry a lot | 5 (3–5) | 5 (3–5) |
p > 0,05 | 5 (4–5) | 5 (3,25–5) |
p > 0,05 | |
Seeing your baby look sad | 4 (4–5) | 4 (3–5) |
p > 0,05 | 5 (4–5) | 5 (3,25–5) |
p < 0,05 | |
Seeing a needle or tube put in your baby | 4 (2,25–5) | 4 (2,25–5) |
p > 0,05 | 5 (4–5) | 5 (4–5) |
p < 0,05 | |
Seeing your baby have problems breathing | 4,5 (3,25–5) | 4 (3–5) |
p > 0,05 | 5 (4–5) | 5 (3,25–5) |
p < 0,05 | |
Seeing your baby surrounded by machinery and having medical treatments | 3 (1–5) | 3 (1–5) |
p > 0,05 | 5 (4–5) | 5 (4–5) |
p > 0,05 | |
When your baby can’t respond to you | 1 | 1 |
p > 0,05 | 1 | 1 |
p > 0,05 | |
Sight and sound | Monitors and equipment in the room | 3 (1–4) | 3 (1–4) |
p > 0,05 | 5 (4–5) | 5 (4–5) |
p > 0,05 |
The sudden sound of monitor alarms | 4 (2–4) | 3 (2–4) |
p > 0,05 | 4 (2,25–5) | 4 (2,25–5) |
p > 0,05 | |
The other sick children in the room | 3 (1–4) | 2,5 (1–4) |
p > 0,05 | 3 (1,25–4,75) | 3 (1,2–4,75) |
p > 0,05 | |
The large number of nurses, doctors, and other staff who work with your child | 1 (1–3) | 1 (1–3) |
p > 0,05 | 1 (1–3) | 1 (1–3) |
p > 0,05 | |
When other children in the hospital have a crisis | 4 (1,25–4) | 3 (1,25–4) |
p > 0,05 | 4 (1,5–5) | 4 (1–5) |
p > 0,05 | |
The needs of other parents in the hospital | 1 (1–4) | 1 (1–3) |
p > 0,05 | 2 (1–4) | 2 (1–4) |
p > 0,05 |
M-FCC | M-NFCC |
p_value | F-FCC | F-NFCC |
p_value | ||
---|---|---|---|---|---|---|---|
Median (5°–95°) | Median (5°–95°) | ||||||
Knowledge and understanding | |||||||
I have received adequate information about my baby’s condition and management. | 5 (3–5) | 4 (3–5) |
p < 0,05 | 5 (3–5) | 4 (3–5) |
p < 0,05 | |
The health care team explained things thoroughly using easy to understand language. | 5 (4–5) | 4 (3,25–5) |
p < 0,05 | 5 (4–5) | 4 (3,25–5) |
p < 0,05 | |
The information I have received has been appropriate and timely. | 5 (3–5) | 3 (2–4) |
p < 0,05 | 5 (3–5) | 3 (2–4) |
p < 0,05 | |
Communication and collaboration | |||||||
In the last week I have been able to communicate effectively with my baby’s health care team. | 5 (4–5) | 4 (3–5) |
p < 0,05 | 5 (3,25–5) | 4 (3–5) |
p < 0,05 | |
In the last week I have collaborated with my baby’s health care team in the planning of care for my baby. | 5 (4–5) | 1 (1–2) |
p < 0,05 | 5 (4–5) | 1 (1–2) |
p < 0,05 | |
In the last week I have been able to ask the health care team questions about my baby’s care. | 5 (4–5) | 4 (3–5) |
p < 0,05 | 5 (4–5) | 4 (3–5) |
p < 0,05 | |
Privacy and confidentiality | |||||||
In the last week the privacy of my baby’s care was always considered and upheld | 5 (4–5) | 4,5 (3,25–5) |
p < 0,05 | 5 (4–5) | 5 (3,25–5) |
p > 0,05 | |
In the last week the confidentiality of my baby’s care was always considered and upheld | 5 (4–5) | 5 (3,25–5) |
p < 0,05 | 5 (4–5) | 4,5 (3,25–5) |
p < 0,05 | |
In the last week I have overheard information about other babies | 1 (1–2) | 1 (1–4,5) |
p > 0,05 | 1 (1–2) | 1 (1–3) |
p > 0,05 | |
PSS: NICU | |||||||
Parental role alteration | Being separated from your baby | 5 (4–5) | 5 |
p < 0,05 | 5 (4–5) | 5 (4–5) |
p > 0,05 |
Not being able to regularly care for your baby (e.g., feed, nappy, hold) | 4 (2–4,75) | 5 |
p < 0,05 | 4 (2–4,75) | 5 (3,25–5) |
p < 0,05 | |
Not having a chance to be alone with your baby | 3 (1–4) | 5 (3,25–5) |
p < 0,05 | 3 (1–4) | 5 (3,25–5) |
p < 0,05 | |
Not being able to share your baby with family and friends | 4 (2–4,75) | 5 (3–5) |
p < 0,05 | 4 (2–4,75) | 4,5 (3–5) |
p < 0,05 | |
Not being able to protect your baby from pain and painful procedures | 5 (4–5) | 5 (4–5) |
p > 0,05 | 5 (4–5) | 5 (4–5) |
p > 0,05 | |
Not being able to comfort or help your baby | 5 (4–5) | 5 (4–5) |
p > 0,05 | 5 (4–5) | 5 (4–5) |
p > 0,05 | |
The nurses and other staff seeming closer to the baby than you are | 1,5 (1–3) | 4 (2,25–5) |
p < 0,05 | 1,5 (1–3) | 4 (2,25–5) |
p < 0,05 | |
Not being able to hold your baby | 4 (2–4,75) | 5 (3,25–5) |
p < 0,05 | 4 (2–4,75) | 5 (3–5) |
p < 0,05 | |
Infant appearance | Seeing your baby with tubes or IV lines in him/her | 4 (2,25–5) | 5 (4–5) |
p < 0,05 | 4 (2,25–5) | 5 (4–5) |
p < 0,05 |
Seeing your child in pain | 5 (4–5) | 5 (4–5) |
p > 0,05 | 5 (4–5) | 5 (4–5) |
p > 0,05 | |
Having your child look afraid, be upset or cry a lot | 5 (3–5) | 5 (4–5) |
p < 0,05 | 5 (3–5) | 5 (3,25–5) |
p > 0,05 | |
Seeing your baby look sad | 4 (4–5) | 5 (4–5) |
p < 0,05 | 4 (3–5) | 5 (3,25–5) |
p < 0,05 | |
Seeing a needle or tube put in your baby | 4 (2,25–5) | 5 (4–5) |
p < 0,05 | 4 (2,25–5) | 5 (4–5) |
p < 0,05 | |
Seeing your baby have problems breathing | 4,5 (3,25–5) | 5 (4–5) |
p < 0,05 | 4 (3–5) | 5 (3,25–5) |
p > 0,05 | |
Seeing your baby surrounded by machinery and having medical treatments | 3 (1–5) | 5 (4–5) |
p < 0,05 | 3 (1–5) | 5 (4–5) |
p < 0,05 | |
When your baby can’t respond to you | 1 | 1 |
p > 0,05 | 1 | 1 |
p > 0,05 | |
Sight and sound | Monitors and equipment in the room | 3 (1–4) | 5 (4–5) |
p < 0,05 | 3 (1–4) | 5 (4–5) |
p < 0,05 |
The sudden sound of monitor alarms | 4 (2–4) | 4 (2,25–5) |
p > 0,05 | 3 (2–4) | 4 (2,25–5) |
p < 0,05 | |
The other sick children in the room | 3 (1–4) | 3 (1,25–4,75) |
p > 0,05 | 2,5 (1–4) | 3 (1,2–4,75) |
p < 0,05 | |
The large number of nurses, doctors, and other staff who work with your child | 1 (1–3) | 1 (1–3) |
p > 0,05 | 1 (1–3) | 1 (1–3) |
p > 0,05 | |
When other children in the hospital have a crisis | 4 (1,25–4) | 4 (1,5–5) |
p > 0,05 | 3 (1,25–4) | 4 (1–5) |
p > 0,05 | |
The needs of other parents in the hospital | 1 (1–4) | 2 (1–4) |
p > 0,05 | 1 (1–3) | 2 (1–4) |
p > 0,05 |