OBJECTIVE: To characterize and determine risk factors for key dimensions of well-being at hospital discharge in families of neonates with acute symptomatic seizures. STUDY DESIGN: This prospective, observational cohort study enrolled 144 parent-infant dyads among neonates with acute symptomatic seizures from 9 pediatric hospitals in the Neonatal Seizure Registry. One parent per family completed a discharge survey, which included measures of anxiety and depression, health-related quality of life, and impact on the family. Multivariable regression analyses adjusted for site were constructed to examine parent and infant characteristics associated with well-being. RESULTS: At discharge, 54% of parents reported symptoms of anxiety and 32% reported symptoms of depression. Parents of infants with hypoxic-ischemic encephalopathy reported more depression and worse quality of life than parents of infants with other seizure etiologies. Parental quality of life was also lower with greater infant age at discharge. A higher level of maternal education was associated with greater impact on the family. All these differences were medium to large effect sizes, ranging from 0.52 to 0.78. CONCLUSIONS: Symptoms of anxiety and depression are common in parents of infants with neonatal seizures, and several parent and infant characteristics are associated with poorer parental quality of life and family well-being. These findings are a call to action to improve mental health screening and services for parents of infants with neonatal seizures.
#1Sarah McAndrew(MCW: Medical College of Wisconsin)H-Index: 4
#2Krishna Acharya(MCW: Medical College of Wisconsin)H-Index: 5
Last. Joanne Lagatta(MCW: Medical College of Wisconsin)H-Index: 15
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Objective To determine how infant illness and parent demographics are associated with parent health-related quality of life (HRQL) during and 3 months after hospitalization in the neonatal intensive care unit (NICU). We hypothesized that parents of extremely preterm infants would report lower NICU HRQL than other parents, and that all parents would report improved HRQL after discharge. Study design This prospective study of parent–infant dyads admitted to a level IV NICU for ≥14 days from 2016 t...
Last. Yaacov G. Bachner(BGU: Ben-Gurion University of the Negev)H-Index: 22
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Abstract Contrary to a plethora of studies on the quality of life (QoL) of parents caring for children with chronic conditions, information regarding parents of children with epilepsy remains limited. The main purpose of the current study was to explore associations between children's biomedical characteristics, mothers' sociodemographic characteristics, mothers' situational factors, and QoL among mothers of children with epilepsy. One hundred and fifty mothers of children with epilepsy complete...
Abstract Introduction This study aimed to evaluate and compare parental quality of life (QoL), anxiety, and depression in mothers and fathers of children with epilepsy (CWE). Material and methods Thirty-three mothers and 33 fathers of 33 CWE (aged 1–16 years) completed the World Health Organization Quality of Life–Brief Form (WHOQOL-BREF), Beck Depression Inventory (BDI), and Beck Anxiety Inventory (BAI) questionnaires. Scores for the questionnaires were compared for 36 mothers and 36 fathers of...
Perinatal depression is the most common obstetric complication in the United States, with prevalence rates of 15% to 20% among new mothers. Untreated, it can adversly affect the well-being of children and families throught increasing the risk for costly complications during birth and lead to deterioration of core supports, including partner relationships and social networks. Perinatal depression contributes to long-lasting, and even permanent, consequences for the physical and mental health of p...
#1Tiffany Field(UM: University of Miami)H-Index: 127
Abstract The increasing prevalence of postnatal anxiety highlights the need for summarizing the recent research on this condition to inform screening and intervention efforts. This narrative review of the literature was derived from a search on PubMed and PsycINFO for papers published since 2010. The demographic risk factors for postnatal anxiety include being a young mother, having more education and being employed. Childbirth risk factors include being primiparous in one sample and multiparous...
Abstract Acute symptomatic seizures are a common sign of neurological dysfunction and brain injury in neonates and occur in approximately one to three per 1000 live births. Seizures in neonates are usually a sign of underlying brain injury and, as such, are commonly associated with adverse outcomes. Neurological morbidities in survivors often co-occur; epilepsy, cerebral palsy, and intellectual disability often occur together in the most severely affected children. Risk factors for adverse outco...
Aim To analyze possible factors associated with the quality of life (QoL) of mothers of preterm infants with very low birth weight (VLBW) during the first 3 years after delivery.
Last. Renee D. Boss(Johns Hopkins University)H-Index: 20
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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 w...
Little is known about the quality of life of parents and families of preterm infants after discharge from the neonatal intensive care unit (NICU). Our aims were (1) to describe the impact of preterm birth on parents and families and (2) and to identify potentially modifiable determinants of parent and family impact. We surveyed 196 parents of preterm infants <24 months corrected age in 3 specialty clinics (82% response rate). Primary outcomes were: (1) the Impact on Family Scale total score; and...
Abstract null null Neonates and families face challenges in hypothermic therapy, including trauma to parents, extreme emotions, and unfamiliarity with the medical system. Communication is an essential element to supporting parents while their children are in the NICU, and beyond, building the foundation for the ongoing relationship the family has with the medical system. Significant consideration needs to be given to the critical element of integrating the family into the care of a baby being tr...
#2Hannah C. Glass(UCSF: University of California, San Francisco)H-Index: 37
Last. Taeun Chang(GW: George Washington University)H-Index: 30
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Abstract null null Purpose null 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. null null null Basic procedures null This pros...
In randomized trials, therapeutic hypothermia (TH) is associated with reduced prevalence of the composite outcome mortality or neurodevelopmental morbidity in infants with neonatal encephalopathy (NE). Following systematic review, the reduction in prevalence of both mortality and infant neuromorbidity is clear. Among three trials reporting school age outcomes, the effects of NE and TH suggest that such benefit persists into middle childhood, but none of the major trials were powered to detect di...
Last. Tiffany A. Moore(UNMC: University of Nebraska Medical Center)H-Index: 8
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Objective Limited data are available regarding family and financial well-being among parents whose infants were hospitalized during the 2019 coronavirus (COVID-19) pandemic. The study objective was to evaluate the family and financial well-being of parents whose infants were hospitalized in the neonatal intensive care unit (NICU) during COVID-19. null null null null Study Design Parents were recruited for this online, cross-sectional survey via support groups on social media. Data collection was...
Importance Antiseizure medication (ASM) treatment duration for acute symptomatic neonatal seizures is variable. A randomized clinical trial of phenobarbital compared with placebo after resolution of acute symptomatic seizures closed early owing to low enrollment. Objective To assess whether ASM discontinuation after resolution of acute symptomatic neonatal seizures and before hospital discharge is associated with functional neurodevelopment or risk of epilepsy at age 24 months. Design, Setting, ...
Abstract null null Objectives null This study aimed to characterize the use and impact of assessments of understanding in parent-clinician communication for critically ill infants. null null null Methods null We enrolled parents and clinicians participating in family conferences for infants with neurologic conditions. Family conferences were audio recorded as they occurred. We used a directed content analysis approach to identify clinician assessments of understanding and parent responses to tho...
Last. Don Sharkey(University of Nottingham)H-Index: 16
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Objective Therapeutic hypothermia (TH) for neonatal hypoxic-ischaemic encephalopathy (HIE), delivered mainly in tertiary cooling centres (CCs), reduces mortality and neurodisability. It is unknown if birth in a non-cooling centre (non-CC), without active TH, impacts short-term outcomes. Design Retrospective cohort study using National Neonatal Research Database and propensity score-matching. Setting UK neonatal units. Patients Infants ≥36 weeks gestational age with moderate or severe HIE admitte...
