The thematic data analysis revealed three major themes and six subthemes (Table 2).
Table 2
Major themes and subthemes.
Theme | Subtheme |
1. Parental moral distress has an other-regarding intrapersonal dimension. | |
2. Parental moral distress has a self-regarding intrapersonal dimension. | 2.1. Objectively unjustified feelings of guilt or failure emerged as causes of parental moral distress. 2.2. Moral schism experienced by parents because of a tough moral dilemma which although it was not truly irresolvable parents perceived it as such. 2.3. Fear of self-harm emerged as internal constraint. |
3. Parental moral distress has an interpersonal dimension. | 3.1. Parents initially expressed mild and minor concerns about the physicians’ choices, which ultimately disappeared. 3.2. Well-informed parents developed better relationships with physicians. 3.3. Medical paternalism and institutional factors emerged as external constraints. |
Parental moral distress has an other-regarding intrapersonal dimension.
From data analysis emerged that participants experienced more or less intense internal conflict because of their perceived inability to carry out their parental roles successfully. This was a recurring finding. Participant P15 experienced a dramatic internal conflict, perceived as insolvable (inescapable). She said,
The constant need to be in the NICU and my attachment to my hospitalized child sometimes made me feel guilty for neglecting my other children and family members. The guilt weighed heavily on me and I often found myself overcome with emotion, stopping to wipe away tears as I faced the feeling of not being able to give my all to everyone who depended on me. [Also, regarding the hospitalized child] I was blaming myself for the situation…thinking about what I could have done differently to prevent this situation. The burden of responsibility was heavy and there were times when I felt like I was failing as a parent. In a similar vein was Participant 14.
Furthermore, the Participant P7 experienced an intense internal conflict, which however, was not perceived as insolvable. She said,
There were times when I had to decide whether to stay with my baby or go home to spend time with my other son, he is 8 years old… he definitely needs me. It was a hard decision to make, and I often felt guilty no matter what I chose…It's hard to be there for everyone all the time, but I remind myself that we're all doing our best' (P7).
Moreover, the Participant P11 experienced an internal conflict, which however, was not perceived as insolvable. Data analysis (of interviews and field notes) gave us the impression that the conflict experienced by the Participant was not intense. She said,
I wrestled with the decision of whether or not to hire a nanny to help take care of my baby once he was home. I wanted to be there for my child, but I also had to take care of myself and my own needs…I definitely felt like I wasn't doing enough for everyone, but I know our baby in the NICU needs us more right now.”
Interestingly, while the Participants P2, P5, P7, P11, P13 expressed their negative feelings due to the fact that they felt deeply concerned about their other children, they said that they had already developed coping mechanisms to alleviate it. The Participant P13 said, I remind myself that we are all in this together and we will get through this as a family. The Participant P7 said, I keep reminding myself that we are all doing the best we can. Participants P2, P5 and P11 clearly declared that they felt that the ill children were the ones in urgent need of their parents at the present time. More precisely, the Participant P2 set priorities and said,
First it's this baby, then my other children, then my husband, and then me [pause] at the end. I love them so much and let it be me in the end, I don't mind [smiles].
Finally, participants felt negative emotions of guilt due to the fact that having an infant in the NICU prevented them from supporting their parents or partner (P1), or even from caring for themselves (P8).
Parental moral distress has a self-regarding intrapersonal dimension.
Objectively unjustified feelings of guilt or failure emerged as causes of parental moral distress.
Participants felt guilty being not able to protect their infants from illness or suffering, although their feeling of guilt was not based on logical reasons or clear thinking. This was a recurring finding. Participants P1, P2, P3, and P11 said that they experienced negative self-directed emotions of guilt and self-criticism because of their unhealthy state and lifestyle. The Participant P1 said,
I thought something was wrong with my body. I thought it was my body's fault for my baby's condition and my fault that it's in there now.
In the same vein, Participant P2 confessed,
Because I had gestational diabetes, I was told not to eat some sweets and I didn't pay enough attention, I don't know, maybe I'm to blame...if I didn't eat them I don't know....
In a similar vein, Participant P3 declared,
Yes, because I had diabetes I felt guilty. My husband keeps saying it's not my fault, but I believe he feels differently on the inside. It might be my fault..[bursts into tears].
Likewise, participant P11 emphasized,
I blamed myself for not noticing the signs of early labor and being too late to come here.
Participant P6 felt negative self-directed emotions of anger because he perceived that he had outlined the birth plan wrongfully. He said,
I was angry with myself for not being able to provide the best medical care for my infant because we came from Kozani [that is a town in Northern Greece] by ambulance. Of course I knew she would give birth here, but I didn't plan it properly.
Participants P6, P8, P10, P12, P13 and P14 experienced negative self-directed emotions of guilt, anger, self-criticism ,and low self-esteem due to their inability to do otherwise, despite the fact that they were left with no choice and were aware of this. They said,
I know it's not my fault, but the role of a parent awakened in me. I felt I didn't protect my infant... (P8). I was angry with myself for not being able to give the baby a healthy start in life, but I know it's not my fault (P10). I felt guilty that I couldn't breastfeed my baby, even though I knew I shouldn't (P12). There were times when I felt like I was failing as a parent because I couldn't be there for my baby 24 hours a day (P13). When my baby had to be intubated, I was torn between feeling grateful that he was getting the medical care he needed and feeling guilty that I couldn't do more to protect him (P5). Guilt was a frequent companion during our journey to the ICU. I blamed myself for the circumstances that led to my child's hospitalization, constantly asking if there was anything I could have done differently. The guilt intensified when I saw my child's pain or setbacks, and I often blamed myself for not being able to protect them from these struggles (P14).
Participant P11 has dramatically declared her feelings of failure and said,
You know what, Maria, it was really frustrating because I just wanted to do the best for my child [pause], but I couldn't [bursts into tears].
Moral schism experienced by parents because of a tough moral dilemma which although it was not truly irresolvable, parents perceived it as such.
Participants declared they experienced intense internal conflict due to dilemmas they were faced with and which they perceived as insolvable (inescapable) in the given circumstances (mostly against a backdrop of extreme uncertainty). They felt stuck with these dilemmas. The following quote from the interview of the Participant 15 is representative to illustrate that point. The participant experienced very intense internal conflict. She said,
There were times when I had to make difficult decisions, weighing the options and constantly questioning myself. The fear of making the wrong choice gnawed at me. It was a heavy load to carry, full of doubts, tears, and sleepless nights…the conflicting information and emotions made it incredibly difficult..
In a similar vein was Participant 14.
Fear of self-harm emerged as internal constraint.
The participants P2, P3 and P5 felt constrained by themselves. They would like to act on what they knew to be right. However, they feared that acting so might cause harm to themselves.
The Participant P2 said,
There were times when I didn't know which was right. For example, when my baby needed a medical procedure they had to intubate him and I didn't want to see him that way. I asked them "Isn't a simple incubator is not enough?". They told me that it was necessary…
The Participant P3 said,
I was struggling with the decision of whether or not to breastfeed him. While I knew it was the best thing for my baby, I had to weigh that against the physical and emotional toll it took.. It's so new and I don't know how to handle it.
The Participant P5 said,
Yes, there were definitely times when I felt like something was holding me back from taking the actions or decisions that I knew were best for my child. Sometimes when I went to see it, I was afraid that I would be frightened by the image or that it would be forever etched in my mind.
Parental moral distress has an interpersonal dimension.
Parents expressed mild and minor concerns about the physicians’ choices, which ultimately disappeared.
Most of participants reported that they had an excellent relationship with the NICU physicians and trusted them. However, some participants said that they had initially raised mild and minor concerns about the infant’s care, which then faded away, either because parents realized that neonatologists knew better and did the right thing or because parents wondered whether their concerns were well-grounded and would better serve the infant’s best interest. Perhaps parents experienced some mild moral distress (due to the perceived external constraint “my voice is not heard”) which then, however, faded away.
The Participant P2 said,
…sometimes I felt like [the doctors] were making decisions without taking my input into account, I can't tell you exactly, but then I felt calm afterward knowing that they are doing the best for my child.
In a similar vein, the Participant P3 said,
My relationship with the doctors and staff was generally good, but there was one instance where I felt my opinion was not taken into account. I wanted my child to be discharged from the hospital but the doctors felt it was too soon.…I understand they were trying to do the best for my baby but it was frustrating not to have my opinion heard. I'm not sure. Maybe I wasn't thinking straight.
In a similar vein, the Participant P6 said,
I have a good relationship with the doctors and staff, but there was a situation where I felt like I wasn't being listened to. I wanted my child to receive a certain type of milk… I don't know if it was the right one, but anyway.”
Importantly, parents need to watch physicians working with devotion and doing their best. Watching physicians doing so emerged from data analysis as a factor enhancing trust between parents and neonatologists.
The Participant P4 said,
This is not just for show, I know they are doing the right thing and I trust them.
Then, the same participant added,
I preferred live communication. I wanted to be here to see them and hear them and understand them. The doctors supported me...I trust them.
Furthermore, the Participant P2 said,
They were amazing during this difficult time. There was never a case where I felt that my wishes were not respected. Everyone was just running around and I couldn't keep track of what was going on...
Finally, parent inadequately informed us that she could not trust physicians caring for her infant (P9, see below).
Well-informed parents developed better relationships with physicians.
Participants claimed to be involved in medical decisions, but they said they needed to be well enough informed to do so. Lack of information may be an external constraint that might act as antecedent of parental moral distress. The following quote is representative to illustrate this point. The Participant P3 said that if she was adequately informed, she could be better involved in medical decisions,
There were definitely times when I felt like my hands were tied when it came to making decisions about my child in the NICU. It was really frustrating because I wanted to be more involved in the process, but I just didn't feel like I had enough information to do so.
Furthermore, the Participant P9 said that lack of information provided to her undermines her trust to healthcare professionals. She said,
At times, I wondered if the medical decisions made for my baby were the right ones. It was hard to fully trust the doctors and nurses when I felt like I didn't fully understand what was going on.
Medical paternalism and institutional factors emerged as external constraints.
Participants clearly declared that medical paternalism and institutional factors, including institutional rules, may serve as constraints preventing parents from making decisions about their infant’s care or taking action on what they knew to be right.
Participant P14 was focused on medical paternalism. She said,
My relationship with the doctors and staff was positive..[However] there was one particular instance where I disagreed with a treatment plan, believing it could potentially do more harm than good. However, my concerns were dismissed and I was left feeling weak and disappointed.
In a similar vein, Participant P15 clearly emphasized her experience of medical paternalism. She said,
While I had a good relationship with the doctors, at one point my opinion was not heard…I felt like something was crushing me…like my hands were tied…. I felt like an outsider in my own child's medical journey.
It is to be noted that Participant P14 was also focused on institutional rules (protocols) and said,
There were times in the ICU when I felt an overwhelming sense of helplessness. … I wanted to hold my baby in my arms, comfort him and offer him that human touch…what my instincts urged me to do…I knew this would bring him comfort but the medical staff advised against it due to his fragile condition …[I was hindered by] medical protocols…mechanisms surrounding my child… It broke my heart and brought tears to my eyes….
Furthermore, Participants P6, P7, P9, P10 and P12 said that while they wanted greater parental involvement in decision-making, in fact, they could not make decisions about their infants’ care or take action on what they believed to be right. They implied that they were excluded from the decision-making process, partially or wholly. In other words, they highlighted their experiences of medical paternalism. Participant P6 said that such constraint may arise from a range of factors, including medical paternalism and hospital policy or administrative procedures. Finally, the Participant P9 said that constraints may arise from physicians (medical paternalism or inadequate information provided).