Involvement in comfort care highlights a parent’s unique knowledge and skill in relation to his or her own infant.
Learning How to comfort and Learning How to Parent
In the first days after admission to the NICU, parents were often afraid to touch their infants for fear of causing harm or discomfort. By the time of discharge however, most were confident in their ability to comfort was closely linked to the process of learning to parent.
Parent Afraid to Touch Infant (“Petrified Even to touch”)
Many of the parents described feelings of shock and anxiety around the time of their infants admission to the neonatal unit. Although nurses tried to encourage them to touch their infants, they often decided not to do so, describing how they felt scared or even petrified. Parents described a number of situations in which they felt afraid and this was often related to a concern that they might harm their infants.
I was petrified to even touch him. They say it is fine to open the door, to look in and put your hand on him and stuff but obviously we don’t want to pass germs on or touch him and make him scared or catch any of the wires.
A major preoccupation for many parents was the medical equipment, and by focusing on the monitors, parents looked for information about their infants that might alert them to a problem or provide reassurance. Parents did not express an awareness of pain or discomfort in the first few days and written information was often put to one side until later. David said that discomfort is “not something you think about,” and Martin said that his daughter “never seemed to be in pain.” Mary said it was more important to “know the truth” about her infant, suggesting a hierarchy of needs in which issuer of survival must be addressed before pain and comfort.
Parent Observes Infant (“You Can Just See from Looking at Her”)
After the first few days in the neonatal unit, almost all parents began to focus more on their infants and less on the equipment. Many parents stood or sat alone at the cot side for long periods of time with their gaze firmly fixed on their child. During these long periods of gazing, parents often became able to identify behaviors suggesting comfort or discomfort.
At first I don’t consider pain, now when his arms and legs are going, he might be in pain. Personally, I like to see him still. Yesterday he was frowning and I said, “what are you frowning at?” He opened his eyes and I thought he was saying, “You couldn’t leave me now,” and I thought, “Ok I’ll stay.”