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Parent experience of caring for neonates with seizures
  1. Monica Lemmon1,
  2. Hannah Glass2,3,
  3. Renee A Shellhaas4,
  4. Mary Carol Barks5,
  5. Bria Bailey2,
  6. Katie Grant6,
  7. Lisa Grossbauer7,
  8. Kamil Pawlowski8,
  9. Courtney J Wusthoff9,
  10. Taeun Chang10,
  11. Janet Soul11,
  12. Catherine J Chu12,
  13. Cameron Thomas13,
  14. Shavonne L Massey14,
  15. Nicholas S Abend15,
  16. Elizabeth E Rogers16,
  17. Linda S Franck17
  18. on behalf of the Neonatal Seizure Registry
    1. 1 Pediatrics and Population Health Sciences, Duke University School of Medicine, Durham, North Carolina, USA
    2. 2 Neurology and Pediatrics, University of California San Francisco, San Francisco, California, USA
    3. 3 Epidemiology and Biostatistics, University of California San Francisco, San Francisco, California, USA
    4. 4 Pediatrics (Neurology Division), University of Michigan, Ann Arbor, Michigan, USA
    5. 5 Duke-Margolis Center for Health Policy, Duke University, Durham, North Carolina, USA
    6. 6 Parent Partner, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA
    7. 7 Parent Partner, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA
    8. 8 Parent Partner, UCSF Benioff Children's Hospital Oakland, Oakland, California, USA
    9. 9 Neurology and Pediatrics, Stanford University, Palo Alto, California, USA
    10. 10 Neurology, Children's National Medical Center, Washington, District of Columbia, USA
    11. 11 Neurology, Children's Hospital, Boston, Massachusetts, USA
    12. 12 Department of Neurology, Massachusetts General Hospital, Boston, Massachusetts, USA
    13. 13 Pediatrics, Division of Neurology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA
    14. 14 Departments of Neurology and Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA
    15. 15 Neurology, Pediatrics, Anesthesia and Critical Care Medicine, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA
    16. 16 Department of Pediatrics, University of California San Francisco, San Francisco, California, USA
    17. 17 Family Health Care Nursing, University of California San Francisco School of Nursing, San Francisco, California, USA
    1. Correspondence to Dr Monica Lemmon, Pediatrics and Population Health Sciences, Duke University School of Medicine, Durham, NC 27710, USA; monica.lemmon{at}duke.edu

    Abstract

    Objective Neonates with seizures have a high risk of mortality and neurological morbidity. We aimed to describe the experience of parents caring for neonates with seizures.

    Design This prospective, observational and multicentre (Neonatal Seizure Registry) study enrolled parents of neonates with acute symptomatic seizures. At the time of hospital discharge, parents answered six open-ended response questions that targeted their experience. Responses were analysed using a conventional content analysis approach.

    Results 144 parents completed the open-ended questions (732 total comments). Four themes were identified. Sources of strength: families valued medical team consensus, opportunities to contribute to their child’s care and bonding with their infant. Uncertainty: parents reported three primary types of uncertainty, all of which caused distress: (1) the daily uncertainty of the intensive care experience; (2) concerns about their child’s uncertain future and (3) lack of consensus between members of the medical team. Adapting family life: parents described the many ways in which they anticipated their infant’s condition would lead to adaptations in their family life, including adjusting their family’s lifestyle, parenting approach and routine. Many parents described financial and work challenges due to caring for a child with medical needs. Emotional and physical toll: parents reported experiencing anxiety, fear, stress, helplessness and loss of sleep.

    Conclusions Parents of neonates with seizures face challenges as they adapt to and find meaning in their role as a parent of a child with medical needs. Future interventions should target facilitating parent involvement in clinical and developmental care, improving team consensus and reducing the burden associated with prognostic uncertainty.

    • Neurology
    • Neonatology
    • Qualitative research
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    Footnotes

    • Collaborators Dana Annis, Tristan Barako, Marty Barnes, Claire Brown, Karla Contreras, Jennifer Guerriero, Libby Hill, Terri Long and Gwen Ma.

    • Contributors ML contributed to study design and conception, supervised data collection and analysis and drafted the initial manuscript. HG and RAS conceptualised and designed the study, supervised data collection and participated in data analysis and interpretation. MCB and BB participated in data analysis and interpretation. Parent partners KG, LG and KP contributed to study design and conception, data analysis and data interpretation. CJW, TC, JS, CJC, CT, SLM, NSA and EER supervised data collection and contributed to data interpretation. LSF conceptualised and designed the study, supervised data analysis and interpretation and drafted the initial manuscript. All authors reviewed and critically revised the manuscript. All authors approved the final manuscript as submitted and agreed to be accountable for all aspects of the work.

    • Funding Funded by PCORI grant number CER-1507-31187. MEL is supported by the National Institute of Neurological Disorders and Stroke of the National Institutes of Health under award number K12NS098482 and the Derfner Foundation. CJC is supported by NIH K23 NS092923. CJW is supported by K02NS102598.

    • Competing interests None declared.

    • Patient consent for publication Not required.

    • Ethics approval The institutional review board for every site approved the study.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement Data are available on reasonable request. De-identified data will be made available on publication to researchers who provide a methodologically sound proposal for use in achieving the goals of the approved proposal. Proposals should be submitted to shellhaa@med.umich.edu and hannah.glass@ucsf.edu. De-identified data will be made publicly available in compliance with PCORI Policy for Data Management and Data Sharing on final completion of the Neonatal Seizure Registry study.

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