TY - JOUR
T1 - Parent Experience of Neonatal Encephalopathy
T2 - The Need for Family-Centered Outcomes
AU - Lemmon, Monica E.
AU - Donohue, Pamela K.
AU - Parkinson, Charlamaine
AU - Northington, Frances J.
AU - Boss, Renee D.
N1 - Funding Information:
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Dr Monica Lemmon is supported by National Palliative Care Research Center's career development award and has received salary support from the American Academy of Neurology's Medical Education Research Fellowship. Dr Frances Northington's work is supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) of the National Institutes of Health through Grants HD070996 and HD074593 and Covidien. Dr Renee Boss is supported through the Cambia Sojourns Scholars Leadership Award through the Cambia Health Foundation.
Publisher Copyright:
© SAGE Publications.
PY - 2017/3/1
Y1 - 2017/3/1
N2 - We aimed to characterize the parent experience of caring for an infant with neonatal encephalopathy. In this mixed-methods study, we performed semistructured interviews with parents whose infants were enrolled in an existing longitudinal cohort study of therapeutic hypothermia between 2011 and 2014. Thematic saturation was achieved after 20 interviews. Parent experience of caring for a child with neonatal encephalopathy was characterized by 3 principal themes. Theme 1: Many families described cumulative loss and grief throughout the perinatal crisis, critical neonatal course, and subsequent missed developmental milestones. Theme 2: Families experienced entangled infant and broader family interests. Theme 3: Parents evolved into and found meaning in their role as an advocate. These data offer insight into the lived experience of parenting an infant with neonatal encephalopathy. Primary data from parents can serve as a useful framework to guide the development and interpretation of parent-centered outcomes.
AB - We aimed to characterize the parent experience of caring for an infant with neonatal encephalopathy. In this mixed-methods study, we performed semistructured interviews with parents whose infants were enrolled in an existing longitudinal cohort study of therapeutic hypothermia between 2011 and 2014. Thematic saturation was achieved after 20 interviews. Parent experience of caring for a child with neonatal encephalopathy was characterized by 3 principal themes. Theme 1: Many families described cumulative loss and grief throughout the perinatal crisis, critical neonatal course, and subsequent missed developmental milestones. Theme 2: Families experienced entangled infant and broader family interests. Theme 3: Parents evolved into and found meaning in their role as an advocate. These data offer insight into the lived experience of parenting an infant with neonatal encephalopathy. Primary data from parents can serve as a useful framework to guide the development and interpretation of parent-centered outcomes.
KW - hypoxic-ischemic encephalopathy
KW - neonatal encephalopathy
KW - parent
KW - therapeutic hypothermia
UR - http://www.scopus.com/inward/record.url?scp=85012980552&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85012980552&partnerID=8YFLogxK
U2 - 10.1177/0883073816680747
DO - 10.1177/0883073816680747
M3 - Article
C2 - 27932597
AN - SCOPUS:85012980552
SN - 0883-0738
VL - 32
SP - 286
EP - 292
JO - Journal of child neurology
JF - Journal of child neurology
IS - 3
ER -