The parents’ experience of communication with the staff when their infant was treated in the NICU can be described by the main theme ‘being given attention or ignored in their emotional situation’. The main theme derives from three themes: (1) meeting a fellow human being, (2) being included or excluded as a parent and (3) bearing unwanted responsibility.
Meeting a fellow human being
The parents described their distress over their child’s medical condition and appreciated it when the doctors and nurses paid attention to their situation through their communication. The parents felt supported when they were met with compassion, as when the doctor in the conversation showed her feelings. It was comforting to meet the human being behind the professional role.
“The doctor listened, the doctor was also a person … she showed that she was also a fellow human being in the whole thing; she said, ‘but God, here I am, saying horrible things to you, but of course I have to say what I say now’.” (Father)
The parents felt they were taken notice of when the staff responded to their need for information by listening attentively and calmly answering their questions. Unhurried conversation was reassuring and gave parents the opportunity for emotional relief. Parents also appreciated occasions when staff conveyed sensitivity to their need for consolation. The staff gave parents space to be alone, but also offered to share their burden. The parents did not have to communicate with words how they felt, but rather the staff could sense their state of mind and were there in the background when the parents needed them.
“We noticed that they were keeping an eye on the situation … They were hanging around, they were there and started talking a bit and could tell if you wanted to talk.” (Mother)
The parents felt secure with the staff they regularly communicated with and had thus created a relationship with. Having a designated doctor and nurse contact in the NICU for their child provided continuity and felt important to the parents. Getting to know the staff created an atmosphere of trust in which parents dared to talk about their needs and wishes.
“We had our contact nurses … it felt really nice because we could come to them with these extra requests.” (Mother)
The parents felt that conversations with staff created the opportunity for a break from a reality that was difficult to live with. During small talk with the nurse on the ward they got the opportunity to be more than the parent of a sick child; they got to be the person they were before the child was born. Humour in their communication with the staff could defuse the situation at the NICU and make it less painful. Laughing with the staff gave them strength to cope with circumstances.
“Communicating, talking about other things, being allowed to forget reality for a while … there is so much focus on the child. Sometimes it’s like you have no life outside.”(Mother)
Being included or excluded as a parent
The parents felt invited to communicate when the staff took the time to explain the child’s care and treatment to them and invited them to participate in the child’s care. This encouragement to care for the child strengthened parental bonding with the child; parents stated that they had received ‘parent training’ that made them confident in their own ability to care for their baby after they were discharged from the NICU. Through communication an inclusive parenting with mutually trusting cooperation between both parties could arise, which strengthened the parent’s identity as a parent.
“There is a communication together with us, [they] answer questions, provide support, tell us what we can do and what they will help with.” (Father)
The parents felt that they were dependent on communication with the staff to get information about their child and to get support from the staff to participate in their child’s care. When parents were not given information about their child’s care and treatment, they felt themselves excluded in their parenting. For example, not being allowed to participate in the ward round involving their child to hear some of the information that emerged was described as being deprived of their parental role.
“It was weird, because it was my child who was lying there, so I wanted to know what they said; if it had been me who was sick, I would have been allowed to hear it; now there was not really anyone who could speak for him… I was afraid that I was only getting the information that they wanted to talk about at that time.”(Mother)
The parents explained that they got the most information from the staff at the beginning of the child’s hospitalization but at that time it could be difficult to take in information because the mother was most often still recovering from the birth. As time went by, the amount of information and the number of discussions, mainly with doctors, declined after the child’s condition stabilized.
“It would have felt good to have a review discussion there, what happened after the birth … because I have no idea of what happened there, I know that I’ve thought about that afterwards.” (Mother)
The parents stated that they were often left waiting for some time for information about their child’s illness. When the answer was uncertain, or conversations with the doctor were postponed or information failed to materialize, the parents suffered. They were filled with worry and perceived themselves at the mercy of their imagination with unanswered questions such as ‘What is wrong with my child?’ and ‘What are they doing to my child?’
“We sat in the room furthest away, in the private side room, sat there all day and no one even came in to see us … it was several days before I even found out what was wrong with my child … nobody told us.” (Mother)
The parents described communicative situations in which they felt lonely. They felt abandoned when one of the staff members gave them bad news about their child’s condition in passing. It was hard to take in messages from the staff when no one stayed with them to discuss what the news meant for their child.
“Then there was this doctor who just came in for a few minutes, really stressed out, and burst out with, ‘Yes, these three brain injuries and this one at the back are of course very dangerous and blah, blah, blah’ and then he went out. We were completely devastated and just cried and wondered, ‘Were you talking about our child, has he got another brain injury?’” (Mother)
Communication with staff could leave an emotional impression on the parents, such as when they received negative information about their child’s illness – information that was painful to receive and hard to bear. The parents stated that they had difficulty understanding what was being said and that it was about them and their child. Those memories preoccupied them, even after the hospital stay in the NICU.
“When you as a lay person hear the term cerebral infarction, you freeze, you don’t understand that it’s happening to you, this can’t happen to us … There was one doctor, he came unannounced to our room and then you realize that there was some imminent danger, something the matter that wasn’t as it should be. A doctor never comes unannounced, not with positive news anyway. … It took us about a day to regain our composure, so to speak.” (Mother)
Parents who experienced a lack of trust in staff sometimes chose not to communicate their distress. They did not want to show how hurt they were, but instead they put on a brave face, which created feelings of abandonment.
“I have not told this to anyone because whenever I talk about that time, I say we’ve been treated very well … but now that we are discussing communication and staff, I can’t hide it.” (Mother)
Bearing unwanted responsibility
The parents felt that, in their communication with the staff, they adapted to each member of staff’s personality and their availability for conversation. They learned the different responsibilities of the various professionals and what roles they had in communicating with parents. For example, spontaneous and urgent discussions with the doctor were often associated with negative information about the child’s condition, whereas the nurse usually brought good news to them directly.
“The longer it took before we got to talk to a doctor, the better the result. Compared with how often they, the parents of the child next ours got to talk to the doctor, we realized that our son was very healthy. … The nurse was often the one to bring positive news straight away.” (Mother)
Even the structure of the conversation differed between the different professions. Conversations with nurses often took the form of emotional support whereas conversations with doctors focused primarily on information about the child’s medical condition and treatment. It could be difficult for parents to understand the doctor’s information during the conversation, in which case the parents had to take the initiative to ask the nurse for an explanation of what had been said. The parents felt that they had to take an unwanted responsibility upon themselves for successful communication with the nursing staff, when they wanted this to be the responsibility of the staff instead. They also had to act as messengers and inform the staff at the maternity ward about their child’s health care needs. Similar situations occurred when the child was transferred to another unit and the parents had to brief the staff there.
“Communication between the maternity ward and Neonatal could be improved. They had failed to schedule the hearing test. They didn’t know if it was the maternity ward or Neonatal that booked it, so I had to check it myself. It was several weeks after we had arrived home.... Then I got worried that there might be more things they had missed. ”(Mother)
Likewise, they felt that the staff had unspoken expectations of them as a parent: how much they were expected to be present with their child, what they should participate in and take responsibility for in the care of the child. This could make the parent feel insecure in their parenting role. When they felt that the staff were not communicating with them about their child’s care and treatment, they had to request this information themselves, which was difficult when the parent did not know what to ask about.
“Vague communication, should we remember when the child needs feeding or should the staff do it, and sometimes in case we forgot … it was as if we were supposed to take on the responsibility.
A main interpretation emerges from the three themes of the parents’ experiences of communication with NICU staff. Their experience can be understood as being paid attention to or ignored in their emotional situation. Parenthood in the NICU begins as an involuntary journey whose ultimate goal is a well-functioning family. The parents go through their time in the NICU either in communication with the staff or in the absence of such communication. The parent is dependent on communication with the staff, and attentive communication exists when the staff member gives full attention and is responsive to the parent’s situation; this means that parents feel that they are being listened to in meetings with the staff. Attentive conversations with the staff create a trusting relationship that gives parents peace of mind and the ability to orient themselves in their chaotic situation.
Where communication is absent, parents feel isolated in their situation, which amplifies their concerns about their child and leads to a sense of abandonment. The parents will then be forced to take responsibility for their situation and make efforts to establish communication with the staff.