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

Lemmon, Monica E.; Glass, Hannah C.; Shellhaas, Renée A.; Barks, Mary C.; Bansal, Simran; Annis, Dana; Guerriero, Jennifer L.; Pilon, Betsy; Wusthoff, Courtney J.; Chang, Taeun; Soul, Janet S.; Chu, Catherine J.; Thomas, Cameron; Massey, Shavonne L.; Abend, Nicholas S.; Rau, Stephanie; Rogers, Elizabeth E.; Franck, Linda S.; Registry, Neonatal Seizure

doi:10.1016/j.pediatrneurol.2021.07.013

Cited by 12 publications

(4 citation statements)

References 36 publications

(46 reference statements)

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“…As seen in other disciplines, parents appreciated team consensus and when conversations included trusted members of the health care team. 21 Interprofessional team meetings in advance of interactions with family members are one strategy to promote team consensus. 22,23 Parents emphasized the value of including team members with whom they shared a longitudinal relationship, supporting existing guidelines to implement primary nursing and longitudinal attending models.…”

Section: Discussionmentioning

confidence: 99%

The ALIGN Framework

et al. 2023

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Background and Objectives:Clinicians often communicate complex, uncertain, and distressing information about neurologic prognosis to parents of critically ill infants. While communication tools have been developed in other disciplines and settings, none address the unique needs of the neonatal and pediatric neurology context. We aimed to develop a parent-informed framework to guide clinicians in communicating information about neurologic prognosis.Methods:Parents of infants with neurologic conditions in the intensive care unit were enrolled in a longitudinal study of shared decision-making from 2018-2020. Parents completed semi-structured interviews following recorded family meetings with the health care team, at hospital discharge, and 6 months after discharge. All interviews targeted information about parent preferences for prognostic disclosure. We analyzed the data using a conventional content analysis approach. Two study team members independently coded all interview transcripts and discrepancies were resolved in consensus. We used NVIVO 12 qualitative software to index and organize codes.Results:Fifty-two parents of 37 infants completed 123 interviews. Parents were predominantly mothers (n=37/52, 71%) with a median age of 31 (range 19-46). Half were Black (n=26/52, 50%) and a minority reported Hispanic ethnicity (n=2/52, 4%). Inductive analysis resulted in the emergence of five phases of prognostic communication (Approach, Learn, Inform, Give support, and Next steps: ALIGN): 1)Approach: Parents appreciated receiving consistent information about their child’s neurologic outcome from clinicians who knew their child well. 2)Learn: Parents valued when clinicians asked them how they preferred receiving information and what they already knew about their child’s outcome prior to information delivery. 3)Inform: Parents valued honest, thorough, and balanced information that disclosed prognostic uncertainty and acknowledged room for hope. 4)Give support: Parents valued empathic communication and appreciated clinicians who offered real-time emotional support. 5)Next steps: Parents appreciated clinicians who connected them to resources, including peer support.Discussion:The ALIGN framework offers a novel, parent-informed strategy to effectively communicate neurologic prognosis. While ALIGN represents key elements of a conversation about prognosis, each clinician can adapt this framework to their own approach. Future work will assess the effectiveness of this framework on communication quality and prognostic understanding.

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Section: Discussionmentioning

confidence: 99%

The ALIGN Framework

et al. 2023

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“…13,27 Parents of neonates with seizures report that uncertainty about the future is a major stressor. 16,28,29 We provide a new, objective predictor of outcome: the ability to take oral feeds. Early identification of infants who are at risk for a long transition time to oral feeds could provide early opportunities for oral motor intervention before feeding issues develop, 30 and distinguish infants who are at high risk for impaired functional development.…”

Section: Discussionmentioning

confidence: 99%

“…Parents of neonates with seizures report that uncertainty about the future is a major stressor 16,28,29 . We provide a new, objective predictor of outcome: the ability to take oral feeds.…”

Section: Discussionmentioning

confidence: 99%

Feeding and developmental outcomes after neonatal seizures—A prospective observational study

Roberts

Barks

Glass

et al. 2022

Annals of the Child Neurology Society

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ObjectiveAmong neonates with acute symptomatic seizures, we evaluated whether the inability to take full feeds at the time of hospital discharge from neonatal seizure admission is associated with worse neurodevelopmental outcomes, after adjusting for relevant clinical variables.MethodsThis prospective, nine‐center study of the Neonatal Seizure Registry (NSR) assessed characteristics of infants with seizures, including evidence of brainstem injury on magnetic resonance imaging (MRI), mode of feeding upon discharge, and developmental outcomes at 12, 18, and 24 months. The inability to take oral feeds was identified through a review of medical records. Brainstem injury was identified through a central review of neonatal MRIs. Developmental outcomes were assessed with the Warner Initial Developmental Evaluation of Adaptive and Functional Skills (WIDEA‐FS) at 12, 18, and 24 months corrected age.ResultsAmong 276 infants, inability to achieve full oral feeds was associated with lower total WIDEA‐FS scores (160.2 ± 25.5 for full oral feeds vs. 121.8 ± 42.9 for some/no oral feeds at 24 months, p < 0.001). At 12 months, a gastrostomy tube was required for 23 of the 49 (47%) infants who did not achieve full oral feeds, compared with 2 of the 221 (1%) who took full feeds at discharge (p < 0.001).ConclusionsThe inability to take full oral feeds upon hospital discharge is an objective clinical sign that can identify infants with acute symptomatic neonatal seizures who are at high risk for impaired development at 24 months.

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“…Recent studies regarding parental preferences for communication indicate that parents want us to provide direct, transparent, honest, compassionate, and frequent communication. 2 Although these methods of communication may require additional effort on the part of the clinician, it may influence how a family processes the experience when faced with a newborn who has brain injury and what the consequences of that injury might be for the future of both the child and family.…”

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confidence: 99%

Scalp Swelling, a Proxy for “Birth Trauma,” Is Not Associated With Neonatal Brain Injury

Bonifacio,

de Vries

2023

Neurology

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The issue of so called “birth trauma” and its potential association with neonatal brain injury is incompletely explored in the literature but of interest to parents, obstetricians, pediatricians, neonatologists, child neurologists, and lawyers. The study presented by Dunbar et al.1 in this issue of Neurology® provides a method to address the potential relationship or causal association of external forces on the neonatal head during the birth process, so called “birth trauma,” with the development of neonatal brain injury. This is an important study because currently there is no rigorous evidence using quantitative measures in the literature that substantially addresses this question. In the rare cases in which a newborn develops signs of brain injury shortly after birth, there may be parental distress and psychological trauma around the birthing process that can be further amplified by a difficult delivery and/or the presence of significant molding and caput succedaneum (scalp swelling). Birthing persons, parents, and family members may incorrectly conclude that the same mechanisms that lead to the development of scalp swelling equate to “birth trauma,” and may increase the risk of or directly cause brain injury.

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

Cited by 12 publications

References 36 publications

The ALIGN Framework

The ALIGN Framework

Feeding and developmental outcomes after neonatal seizures—A prospective observational study

Scalp Swelling, a Proxy for “Birth Trauma,” Is Not Associated With Neonatal Brain Injury

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