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Communication Challenges in Neonatal Encephalopathy
- Source :
- Pediatrics. 138
- Publication Year :
- 2016
- Publisher :
- American Academy of Pediatrics (AAP), 2016.
-
Abstract
- BACKGROUND: Families must process complex information related to neonatal encephalopathy and therapeutic hypothermia. METHODS: In this mixed methods study, semi-structured interviews were performed with parents whose infants were enrolled in an existing longitudinal cohort study of therapeutic hypothermia between 2011 and 2014. RESULTS: Thematic saturation was achieved after 20 interviews. Parental experience of communicating with clinicians was characterized by 3 principle themes. Theme 1 highlighted that a fragmented communication process mirrored the chaotic maternal and neonatal course. Parents often received key information about neonatal encephalopathy and therapeutic hypothermia from maternal clinicians. Infant medical information was often given to 1 family member (60%), who felt burdened by the responsibility to relay that information to others. Families universally valued the role of the bedside nurse, who was perceived as the primary source of communication for most (75%) families. Theme 2 encompassed the challenges of discussing the complex therapy of therapeutic hypothermia: families appreciated clinicians who used lay language and provided written material, and they often felt overwhelmed by technical information that made it hard to understand the “big picture” of their infant’s medical course. Theme 3 involved the uncertain prognosis after neonatal encephalopathy. Parents appreciated specific expectations about their infant’s long-term development, and experienced long-term distress about prognostic uncertainty. CONCLUSIONS: Communicating complex and large volumes of information in the midst of perinatal crisis presents inherent challenges for both clinicians and families. We identified an actionable set of communication challenges that can be addressed with targeted interventions.
- Subjects :
- Adult
Male
Parents
Adolescent
Emotions
MEDLINE
Health literacy
Nursing Staff, Hospital
Article
Interviews as Topic
Young Adult
03 medical and health sciences
0302 clinical medicine
Nursing
Hypothermia, Induced
Professional-Family Relations
030225 pediatrics
Medical Staff, Hospital
medicine
Humans
030212 general & internal medicine
Communication source
Young adult
Set (psychology)
Health Education
Brain Diseases
Neonatal encephalopathy
business.industry
Communication
Infant, Newborn
Uncertainty
Prognosis
medicine.disease
Health Literacy
Distress
Pediatrics, Perinatology and Child Health
Female
Health education
Medical emergency
business
Subjects
Details
- ISSN :
- 10984275 and 00314005
- Volume :
- 138
- Database :
- OpenAIRE
- Journal :
- Pediatrics
- Accession number :
- edsair.doi.dedup.....1f85ba8cea44ad1f9b2984caf8678581