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Parent experience of caring for neonates with seizures.

Publication ,  Journal Article
Lemmon, M; Glass, H; Shellhaas, RA; Barks, MC; Bailey, B; Grant, K; Grossbauer, L; Pawlowski, K; Wusthoff, CJ; Chang, T; Soul, J; Chu, CJ ...
Published in: Arch Dis Child Fetal Neonatal Ed
November 2020

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.

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Published In

Arch Dis Child Fetal Neonatal Ed

DOI

EISSN

1468-2052

Publication Date

November 2020

Volume

105

Issue

6

Start / End Page

634 / 639

Location

England

Related Subject Headings

  • Uncertainty
  • Stress, Psychological
  • Sleep Wake Disorders
  • Seizures
  • Quality of Life
  • Qualitative Research
  • Prospective Studies
  • Professional-Family Relations
  • Pediatrics
  • Patient Care Team
 

Citation

APA
Chicago
ICMJE
MLA
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Lemmon, M., Glass, H., Shellhaas, R. A., Barks, M. C., Bailey, B., Grant, K., … Neonatal Seizure Registry, . (2020). Parent experience of caring for neonates with seizures. Arch Dis Child Fetal Neonatal Ed, 105(6), 634–639. https://doi.org/10.1136/archdischild-2019-318612
Lemmon, Monica, Hannah Glass, Renee A. Shellhaas, Mary Carol Barks, Bria Bailey, Katie Grant, Lisa Grossbauer, et al. “Parent experience of caring for neonates with seizures.Arch Dis Child Fetal Neonatal Ed 105, no. 6 (November 2020): 634–39. https://doi.org/10.1136/archdischild-2019-318612.
Lemmon M, Glass H, Shellhaas RA, Barks MC, Bailey B, Grant K, et al. Parent experience of caring for neonates with seizures. Arch Dis Child Fetal Neonatal Ed. 2020 Nov;105(6):634–9.
Lemmon, Monica, et al. “Parent experience of caring for neonates with seizures.Arch Dis Child Fetal Neonatal Ed, vol. 105, no. 6, Nov. 2020, pp. 634–39. Pubmed, doi:10.1136/archdischild-2019-318612.
Lemmon M, Glass H, Shellhaas RA, Barks MC, Bailey B, Grant K, Grossbauer L, Pawlowski K, Wusthoff CJ, Chang T, Soul J, Chu CJ, Thomas C, Massey SL, Abend NS, Rogers EE, Franck LS, Neonatal Seizure Registry. Parent experience of caring for neonates with seizures. Arch Dis Child Fetal Neonatal Ed. 2020 Nov;105(6):634–639.

Published In

Arch Dis Child Fetal Neonatal Ed

DOI

EISSN

1468-2052

Publication Date

November 2020

Volume

105

Issue

6

Start / End Page

634 / 639

Location

England

Related Subject Headings

  • Uncertainty
  • Stress, Psychological
  • Sleep Wake Disorders
  • Seizures
  • Quality of Life
  • Qualitative Research
  • Prospective Studies
  • Professional-Family Relations
  • Pediatrics
  • Patient Care Team