Neurologic Outcome After Prematurity: Perspectives of Parents and Clinicians

Parent Discussion of the Future Focused on Survival, Whereas Clinician Discussion of the Future Focused on Neurologic Outcome and the Potential for Disability

Parent discussion of their infant’s future was represented by 3 primary topics: future development and survival, future therapy needs, and future equipment needs. Within prognostic discussion, a large majority of prognostic codes (327 of 369) were devoted to discussion of future development and survival, with the remainder primarily being devoted to discussion of technology or equipment, including gastrostomy tubes, tracheostomies, and ventriculoperitoneal shunts. At some point during the study, parents from all cases discussed infant survival, including worries about potential infant death or discussion of their infant’s survival despite poor prognostic predictions by clinicians. Discussion of survival occurred not only at study entry and after life-threatening events; parents generally discussed survival throughout the hospital course and beyond. Those parents who did discuss information about future outcome emphasized infant survival or quality of life: “We’re hoping that even with all of this, if she pulls through, that she will have a normal life,” (mother, case 1).

Although the overwhelming majority of parents discussed worries about infant survival, parents in only 2 cases discussed concerns about future neurologic development or made any comment about whether their child would walk or talk. Many parents described sentiments like, “We’ll love [him or her] no matter what happens.” Other families felt that outcome was out of their control and that “whatever is going to happen is going to happen.” The ways in which parents thought about prognostic information was often connected to their role as a parent. Some parents envisioned what life would be like after discharge: “I imagine dressing her and taking her to church, and that’s what keeps the hope alive,” (mother, case 1). Others had pragmatic considerations about how to navigate an uncertain prognosis: “It’s so foreboding, I got to thinking the other day…I haven’t even sent out birth announcements,” (mother, case 2).

Conversely, the majority of clinician prognostic discussion was explicitly related to infant development and concrete developmental milestones (for example, walking and talking). In all cases, clinicians discussed an individual infant’s prognosis within the context of their clinical experience and discussed similar cases or existing literature. Clinicians emphasized concerns about disability in most cases (n = 7). Many clinicians divided concerns for developmental problems into 2 categories: (1) expected neurodevelopmental risk associated with prematurity and (2) added neurodevelopmental risk in the setting of neurologic injury. Some clinicians described neurologic injury as “devastating” or “catastrophic.” For many clinicians, especially bedside nurses, concerns about a poor neurologic prognosis were tied to concerns about infant suffering.

Parent Discussion of the Future Was Broad and Intertwined With Hope, Spirituality, and Exceptionalism; Clinician Discussion of the Future Was Probabilistic and Specific

Throughout all cases, parent prognostic discussion was broad, with nearly every parent using language like, “[She or he] will get through this,” or hoping their child would “make progress.” Developmental or clinical concerns were also described in broad terms like, “I know [she or he] will be behind” or worries that “things will go downhill.” Prognosis was rarely discussed in probabilistic terms. Whereas prognostic discussion was vague, discussion of daily medical care was not. Within each case, parents adopted medical jargon over time, especially as it related to bedside care.

Parents used exceptionalism in their discussion of individual infants; individual infants were called “fighters” by a parent in most cases (n = 7). Some parents described individual children as “miracles” or a “miracle baby.” In later interviews, some parents described their child’s unexpectedly reassuring development in ways such as, “You’d never know [he or she] was a ‘preemie.’” Many parents described that their child would or did “pull through” medical complications. Across cases, parent discussion of prognostic information almost always co-occurred with discussion of hope or spirituality.

Clinician discussion of outcome across cases targeted the individual infant and referenced specific outcomes. Clinicians often discussed population-based estimates and used statistics to provide context for individual infants. Although clinicians did reference hope in their interviews, references to hope were often followed by a caveat: “To me, hope means...is different than prognosis. So, my hope might be a lot higher than my prognosis,” (nurse practitioner, case 7). Although less common, some clinicians also used exceptionalism (for example, “fighter” or “miracle”) to describe an infant’s course.

Clinicians Perceived Parents Did Not or Could Not Understand Information About Prognosis

Clinicians articulated concerns that parents were not able to internalize important information about their child’s status. These concerns were sometimes concrete; for 1 case, multiple clinicians were concerned that a language barrier prevented parents from receiving consistent and clear information. For 5 cases, concerns were raised that parents did not understand how sick their infant was or the potential for significant disability. This finding was best illustrated in 2 cases in which the infant had a grim neurologic prognosis. With both of those cases, nearly all clinicians voiced concern that parents were not able to process information about outcome; bedside nurses voiced significant moral distress. Concurrent interviews from parents revealed that, in fact, long-term outcome weighed heavily on their minds, as highlighted by one mother’s worry (case 7):

I wonder, will she be able to walk, or crawl, or what will we have to do for her? … and all aspects of trying to get her to walk, or help her to walk … or will we have to push her around in a wheelchair? … I do think about how [the] overall outcome will be.

Parents Valued Consistent Therapeutic Relationships; Transitions of Care and Underused Roles of the Care Team Undermined This Consistency

Parents from all cases referenced gratitude toward clinicians, with several parents referencing a given provider’s compassion. Parents described receiving much of their communication about their infant’s course from the bedside nurses. Some parents and nurse clinicians referenced a desire for nurses to be involved in major discussions with the team. Despite the frequent discussion of spirituality by parents, discussion of chaplain involvement was rare, occurring with only 2 cases.

Parents expressed frustration when it appeared that members of the health care team were not on the same page. Parents described several ways in which they perceived a lack of consensus: disagreement between the primary and specialty teams, switched plans as a team member changed, and different approaches to bedside care among varied nurses or units. In nearly all cases (n = 7), clinicians referenced being unsure of who had previously discussed the neurologic prognosis with families and what had been said.

Parents appreciated when there was continuity of care, especially regarding those clinicians who had been with them throughout their infant’s hospital course. For many cases, the patients received follow-up in a clinic staffed by the same providers who cared for their infant in the hospital; parents were proud to share with clinicians what their child had achieved since discharge. Several parents specifically commented on the value of the primary nursing model. One mother (case 4) articulated the following:

It’s just a relief to know that there’s someone there who knows what he does, how often he does it, what’s considered normal, what’s considered abnormal. I just feel that the primary care you receive from the primaries is just above and beyond. They’re all good, but you can see a difference in the primary care.

Clinical Uncertainty Forced Parents and Clinicians To Wait and See About the Future

Throughout all cases, parents discussed the difficulties of the daily uncertainties that made up their NICU experience. Many of them felt as though they had to wait and see or take things day by day. Some parents described the difficulty of waiting for information and feeling unsure of what to expect. Most parents expressed that the uncertainty was stressful. For many parents, concerns about uncertainty continued throughout the study, even once the child was doing well after discharge.

Prognostic uncertainty, and the difficulty with providing precise estimates, was also voiced by multiple providers. Across cases, multiple clinicians described the sentiment, “Kids can surprise you.” Many clinicians (such as the social worker in case 9) discussed previous cases and experiences, often with an emphasis on an unexpected, positive outcome:

I’ve seen some amazing things over the years, amazing things…in babies that are truly just miracles. And so, I tell families, ‘I’m never going to take away your hope. What I want to hopefully achieve through the medical team is that you have a realistic understanding of what’s going on, that you know what the issues are and what we’re doing for your child,’ but that I’ll always walk with them being very hopeful about what’s going on.