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

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

doi:10.1016/j.pediatrneurol.2021.07.013

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

Pediatr Neurol. 2021 Nov:124:26-32. doi: 10.1016/j.pediatrneurol.2021.07.013. Epub 2021 Jul 30.

Authors

Monica E Lemmon¹, Hannah C Glass², Renée A Shellhaas³, Mary Carol Barks⁴, Simran Bansal⁵, Dana Annis⁶, Jennifer L Guerriero⁷, Betsy Pilon⁸, Courtney J Wusthoff⁹, Taeun Chang¹⁰, Janet S Soul¹¹, Catherine J Chu¹², Cameron Thomas¹³, Shavonne L Massey¹⁴, Nicholas S Abend¹⁵, Stephanie Rau³, Elizabeth E Rogers¹⁶, Linda S Franck¹⁷; Neonatal Seizure Registry

Affiliations

¹ Division of Pediatric Neurology and Developmental Medicine, Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina; Margolis Center for Health Policy, Duke University, Durham, North Carolina. Electronic address: monica.lemmon@duke.edu.
² Departments of Neurology and Pediatrics, UCSF Benioff Children's Hospital, University of California, San Francisco, San Francisco, California; Department of Epidemiology & Biostatistics, University of California, San Francisco, San Francisco, California.
³ Department of Pediatrics, University of Michigan, Ann Arbor, Michigan.
⁴ Margolis Center for Health Policy, Duke University, Durham, North Carolina.
⁵ Division of Pediatric Neurology and Developmental Medicine, Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina.
⁶ NSR Parent Partner, Children's National Hospital, Washington, District of Columbia.
⁷ NSR Parent Partner, Children's Hospital Boston, Boston, Massachusetts; Dana Farber Cancer Institute, Boston, Massachusetts.
⁸ NSR Parent Partner, Hope for HIE, West Bloomfield, Michigan.
⁹ Departments of Neurology and Pediatrics, Stanford University, Stanford, California.
¹⁰ Department of Neurology, Children's National Hospital, George Washington University School of Medicine, Washington, District of Columbia.
¹¹ Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts.
¹² Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts.
¹³ Department of Pediatrics, University of Cincinnati, College of Medicine, Cincinnati, Ohio; Division of Neurology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
¹⁴ Departments of Neurology and Pediatrics, Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania.
¹⁵ Departments of Neurology and Pediatrics, Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania; Department of Anesthesia and Critical Care Medicine, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania.
¹⁶ Departments of Neurology and Pediatrics, UCSF Benioff Children's Hospital, University of California, San Francisco, San Francisco, California.
¹⁷ Department of Family Health Care Nursing, University of California, San Francisco, San Francisco, California.

PMID: 34509000
PMCID: PMC8523194
DOI: 10.1016/j.pediatrneurol.2021.07.013

Abstract

Background: Parents of neonates with seizures are at risk of mental health symptoms due to the impact of illness on family life, prognostic uncertainty, and the emotional toll of hospitalization. A family-centered approach is the preferred model to mitigate these challenges. We aimed to identify strategies to promote family-centered care through an analysis of parent-offered advice to clinicians caring for neonates with seizures.

Methods: This prospective, observational, and multicenter (Neonatal Seizure Registry) study enrolled parents of neonates with acute symptomatic seizures. Parents completed surveys about family well-being at 12, 18, and 24 months corrected gestational age. Parents were asked open-ended questions eliciting their advice to clinicians caring for neonates with seizures. Responses were analyzed using a conventional content analysis approach.

Results: Among the 310 parents who completed surveys, 118 (38%) shared advice for clinicians. These parents were predominantly mothers (n = 103, 87%). Three overarching themes were identified. (1) Communicate information effectively: parents appreciate when clinicians offer transparent and balanced information in an accessible way. (2) Understand and validate parent experience: parents value clinicians who display empathy, compassion, and a commitment to parent-partnered clinical care. (3) Providesupportand resources: parents benefit from emotional support, education, connection with peers, and help navigating the health care system.

Conclusions: Parents caring for neonates with seizures appreciate a family-centered approach in health care encounters, including skilled communication, understanding and validation of the parent experience, and provision of support and resources. Future interventions should focus on building structures to reinforce these priorities.

Keywords: Communication; Mental Health; Neonate; Neurology.

Publication types

Multicenter Study
Observational Study
Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't

MeSH terms

Adult
Caregivers / psychology*
Child, Preschool
Female
Health Care Surveys
Health Communication*
Humans
Infant
Infant, Newborn
Infant, Newborn, Diseases / therapy*
Male
Parents / psychology*
Professional-Family Relations*
Prospective Studies
Qualitative Research
Seizures / therapy*

Grants and funding

K23 NS116453/NS/NINDS NIH HHS/United States