Lack of understanding of differences in VLBW infants compared to term
Lack of understanding and respect for caregivers' and families' experience
Lack of coordination of care between hospital and community providers
Health professionals induced increased pressures and stress
This was a strong theme that came out of each focus group. Families reported frequent encounters that demonstrated a lack of understanding by pediatricians, other health professionals, WIC clinic staff, and medical clinic office staff about the differences between full-term and VLBW infants.
"Or I just felt like I was wasting my time basically that you know, I would have to go through a lot of the story and they'd give me the term baby advice which didn't necessarily fit for her or I didn't know that it fit and I couldn't trust that it fit because I knew that they didn't know about preemies. I think that it would be nice to have some way to bridge that. I don't know what that would be. You know, your average pediatric practice, I don't know how many preemies they have so it might not be practical, but to me it was a barrier at times."
When VLBW infants are first discharged from the hospital, many families perceive of their children as "fragile." Families have grown accustomed to 24-hour access to health professionals. The barriers to medical advice that is imposed by receptionists, office nurses, and failure to return phone calls in a timely manner were difficult for these families. Most parents had been told to limit their infant's contact with other children in the first year, and although pediatricians gave this advice, some families reported that office staff did not understand what this meant.
"That experience was really bad because the two women who were working at the appointment desk didn't understand prematurity. They didn't understand how vital it was that we weren't sitting in this waiting room with all these sick kids. I think they kept thinking we were these parents that were saying put us in this room so we can get ahead of everyone else."
Many parents spoke of instances when health professionals who were new to them, for example ER staff or nurses or physicians who were part of large group practices, would dismiss symptoms that may be trivial in a full-term infant, but have the potential to be more serious in VLBW infants.
This played out in several ways in terms of feeding and nutrition. Families reported a lack of reading materials relating to VLBW infants. They often spoke of professionals who provided routine feeding advice based on chronological age instead of the infant's developmental readiness.
"That when they initially come home they don't eat the same volume as a full-term baby. I feel like the person that we dealt with didn't quite know how to put that into perspective as, 'Okay, he's doing fine, or he's not getting enough, or too much.' So, just making them aware of the differences between a preterm infant and a full-term as far as nutrition and eating and complications that they have."
"I felt like there wasn't a lot of information out there. I didn't know where to turn with some of that and I still feel like I don't in some ways know where to go around those, is she okay as a preemie? Is she ever going to gain weight? And those kinds of issues or, is this kind of going to be her body shape?"
Parents felt that their more challenging infants warranted care and consideration during medical visits.
"So, I think for me one of the biggest things I'd like, I always feel rushed at the pediatrician's office, and it's almost like, you guys can probably relate, you feel like you've been through this huge kind of trauma and you want to just go, 'Wait a second here, I need a little more time to understand these things.'"
Many families reported experiences that indicated to them that health professionals had a lack of respect for a mother's understanding of her own child.
"Because they treat you . . . because you have a preemie baby, you're just a preemie mom. Worried all the time, every little thing you gotta call about, you're just worried they're gonna kick the bucket any moment, so you gotta call about every little cry and whine and that's not it at all."
"I knew the difference between spitting up and vomiting, and she didn't hear me. And when you're sleep deprived and you have a 2-year old, you have a newborn, and you're not communicating well enough and they're not listening well enough, it's just going backwards."
"That's what is frustrating with the medical professional, because you as a parent have to . . .you know your child's personality, temperament, needs. You’re the expert, but I've felt I've had to convince every single medical person I've come to that I am the mother of this child and I'm telling you that this is what I see in my child and I'm not some kind of lunatic. I may be sleep-deprived, but I'm not a lunatic."
It was important to families to feel that health care providers knew their infants. The lack of a visit by the community pediatrician or others who would follow the child after discharge was a common theme. Parents also talked about community providers who appeared to have no information or contact with the hospital and little understanding of the issues of individual infants.
Inconsistency of advice between hospital and community providers was also a common theme.
Some parents felt unduly pressured to meet goals for dietary intake. The concept of "force feeding" came up in several groups. In general, parents felt that force feeding was against their better judgment, but they often did it anyway in the interest of encouraging growth. Parents of older infants and toddlers often regretted this decision and felt that it contributed to ongoing feeding problems.
"I felt that the time schedule to nurse......that caused a lot of stress when we first brought him home. That was part of the stress, you know, was constant keeping a real strict log, keeping real strict tract of how much he ate and when. And I felt that once I relaxed and let him eat when he wanted to eat instead of when the clock said it was time to eat that things went much better. He ate more, he was happier, I wasn’t feeling like I was fighting him so much."
". . . And then I would try to explain, you don't understand, he throws up when you do that. It's too rich, he doesn't like it. I don't see any point. It got to a point where I just told them look, I'm going to do what I need to do. I'm not going to listen to your advice because what your advice has done is forcing him to eat when he doesn't want to eat. Then he throws up not what you just gave him, but what you tried get down him 45 minutes ago. And he's not gaining anything. I'm not keeping anything down him. Why would I want to increase to make him throw up. If I'm getting anything down that's staying down leave it that way. He's not benefiting from throwing-up."
"We had already force fed this child, and force feeding is an understatement. I would hold my baby down, full bottle, and say you've gotta eat, there's no choice here. Take him home, he's got to have this much to eat every day, and here I'd be, muscling him, and telling myself I've got to do this. I've got to get this food in this baby or he's gonna end up in the hospital again. I don't want him back there and I don't want to go back there, and to this day, 17 months later, I am still, I can't say that now, my husband when he feeds him still has to hold him down. He's got it with me, but I also have a ______ product, nipple that I have to squeeze the milk into his mouth, that kind of bottle. He will not take solid food, because of the aversion he's developed."