Neurologic Outcome After Prematurity: Perspectives of Parents and Clinicians

Abstract

BACKGROUND: Parents and clinicians caring for premature infants face high-stakes and timesensitive decisions about care. We aimed to characterize how parents and clinicians discuss outcome in the context of decision-making for premature infants. METHODS: In this qualitative descriptive study, we used a case-based, prospective design. Cases of extreme prematurity were targeted. Parents and clinicians completed semistructured interviews about care decisions longitudinally in the first year of life. Interview data were analyzed by using directed content analysis. RESULTS: Sixteen parents and 53 clinicians of 10 infants completed 178 interviews (n 5 115 parent; n 5 63 clinician). Two primary themes emerged. First, parents and clinicians discussed prognostic information differently from each other. Parents focused on whether their infant would survive, whereas clinicians concentrated on neurologic outcome and the potential for life with disability. Parent discussion of the future was broad and rooted in hope and spirituality. Clinician prognostic language was narrowly focused and probabilistic. Second, we identified barriers and facilitators to a shared understanding of infant outcome. Clinicians perceived that parents were unaware of or unable to process important information about the big picture. Parents valued consistent therapeutic relationships; transitions of care and underused roles of the care team undermined this consistency. Clinical uncertainty forced parents and clinicians to "wait and see" about the future. CONCLUSIONS: Parents and clinicians discuss and weigh information about the future differently from each other as they consider choices for extremely premature infants. Future work should characterize the impact of these differences on prognostic communication and decisionmaking. WHAT'S KNOWN ON THIS SUBJECT: Parents and clinicians of premature infants often face life-anddeath decisions. Little is known about how parents and clinicians discuss, understand, and weigh prognostic information when making high-stakes and timesensitive choices. WHAT THIS STUDY ADDS: Parents and clinicians discuss and weigh prognostic information differently from each other as they consider choices for premature infants. Whereas parents focus on survival, hope, and spirituality, clinicians concentrate on future neurologic outcome and the potential for disability.

Family-Centered Care for Children and Families Impacted by Neonatal Seizures: Advice From Parents

“…While this incongruence could result from sample heterogeneity, it is also consistent with existing data from parents of premature infants suggesting that parents are able to process grim prognostic information concurrently with maintaining hope for an alternative outcome. 24 Taken together, these findings suggest that clinicians should not avoid disclosure of negative prognostic information due to concerns about removing hope. When appropriate, clinicians should disclose not only information about expected impairments but also information about expected function.…”

Prognostic Discussion for Infants with Neurologic Conditions: Qualitative Analysis of Family Conferences

“…Existing data from parents suggest that parents value balanced, concrete information about both their child's expected function and their expected impairments. 17,31,32 Similarly, the Americans with Disabilities Act National Network highlights the importance of emphasizing abilities over limitations. 33 Taken together, existing data and recommendations suggest that clinicians should frame prognostic information in terms of the range of anticipated abilities, inclusive of both impairments and areas of relative strength.…”

“…17 Whereas parents may prioritize discussing the likelihood of survival, clinicians may prioritize sharing information about the risk for neurologic impairment. 17 Improving prognostic communication for neonates with neurologic illness has the potential to mitigate parent distress, improve decision-making quality, and align parent-clinician expectations about infant outcome. Understanding how neurologic prognosis is communicated in current clinical practice is a necessary first step toward the design of interventions to support prognostic communication.…”

Neuropalliative Care for Neonates

“…Additionally, families and clinicians may focus on different key issues when discussing prognosis and goals of care; clinicians are more likely to focus on neurodevelopmental outcomes, whereas parents are more likely to be concerned about survival. 20 Eliciting family members' concerns and values during goals of care conversations will allow clinicians to more effectively partner with parents, or guardians, and aim for what matters to them. Clinicians often share medical information with only 1 family member, placing a burden on them to communicate clinical information to the rest of the family.…”