Infant illness severity and perinatal post-traumatic stress disorder after discharge from the neonatal intensive care unit

Malin, Kathryn J.; Johnson, Teresa S.; McAndrew, Sarah; Westerdahl, Jacqueline; Leuthner, Jonathan; Lagatta, Joanne

doi:10.1016/j.earlhumdev.2019.104930

Cited by 33 publications

(36 citation statements)

References 33 publications

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“…In our search, the large majority of the studies analyzed was on caregivers of children and AYAs affected by tumors, investigated by fourteen studies [ 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 ]. The remaining diagnostic categories of children and AYAs whose caregivers were investigated for PTSD were very heterogeneous and less numerous, and included neonatal intensive care unit (NICU) patients [ 55 , 56 ], epilepsy [ 57 , 58 ], burn injuries, and other accidents [ 41 , 59 , 60 , 61 ], disorders of sex development [ 62 , 63 ], asthma [ 64 ], transplants [ 65 , 66 , 67 , 68 ], HIV [ 66 ], Sickle cell disease [ 66 ], diabetes mellitus type 1 [ 41 ], and neuro-psychiatric disorders [ 69 , 70 , 71 ]. Characteristics of included studies are described in Table 1 .…”

Section: Resultsmentioning

confidence: 99%

“…With this instrument, DSM-5 PTSD diagnosis was assessed utilizing a matching system between symptom criteria and TALS-SR items, and a probable partial PTDS diagnosis was predicted if individuals met two or three of the DSM-5 B, C, D, and E criteria for PTSD [ 57 , 58 ]. Finally, the remaining tools were used only once, and two were self-report measures: the Post-traumatic Stress Disorder Assessment Scale [ 46 ], the Post-traumatic stress disorder questionnaire (PPQ) [ 56 ], and the Clinician-Administered PTSD Scale (CAPS) [ 68 ], a questionnaire administered by a trained clinician.…”

Section: Resultsmentioning

confidence: 99%

“…Longer stays in hospital [ 61 ] as well as objective illness severity [ 56 ] have been associated to increased risk of PTSD. Ingerski et al [ 66 ], in a sample of 64 caregivers of children experiencing a chronic illness, found that being caregivers of transplant candidates was a risk factor for developing PTSD.…”

Section: Resultsmentioning

confidence: 99%

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Post-Traumatic Stress Reactions in Caregivers of Children and Adolescents/Young Adults with Severe Diseases: A Systematic Review of Risk and Protective Factors

Carmassi

Dell’Oste

Foghi

et al. 2020

IJERPH

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Severe illnesses in children and adolescents/young adults (AYAs) may represent a complex burden for patients and their caregivers, including a wide range of mental disorders, particularly post-traumatic stress disorder (PTSD). Few events are as potentially traumatizing as having a son or a daughter diagnosed with a severe, life-threatening, or disabling disease. The presence of PTSD symptoms in caregivers may compromise their efficacy as caregivers and negatively affect the child’s well-being. This systematic review aims at outlining potential risk and protective factors for the development of PTSD symptoms in caregivers of children and AYAs affected by severe acute or chronic illnesses. Thirty-one studies on caregivers of children and AYAs affected by severe, acute, or chronic diseases were included. Socio-demographic and socio-economic characteristics, illness-related distress, psychiatric symptoms, support, and coping styles were found as potential risk/protective factors across studies. It is crucial to consider risk factors affecting caregivers of severely ill young patients, in order to plan focused interventions aimed at preventing an adverse clinical outcome in caregivers and at enhancing caregivers’ coping skills, in order to ultimately improve their quality of life.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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Post-Traumatic Stress Reactions in Caregivers of Children and Adolescents/Young Adults with Severe Diseases: A Systematic Review of Risk and Protective Factors

Carmassi

Dell’Oste

Foghi

et al. 2020

IJERPH

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“…To generate new knowledge regarding healthcare access and adverse family impact among young children according to prematurity status, we aimed to examine differences in healthcare access and adverse family impact among U.S. children ages 0-5 years by prematurity status and determine associations of healthcare access with adverse family impact among U.S. children ages 0-5 years born prematurely. Based on prior research examining healthcare access and adverse family impacts including parental health-related quality of life among children born prematurely or with other special health care needs [17,18,[29][30][31][32][33], we hypothesized that young children born prematurely (i.e., very low birthweight or low birthweight and/or preterm) would have higher risk than other children of poor healthcare access (e.g., access to medical home) and adverse family impact (e.g., parent needing to cut-back or stop work, parental aggravation) than other families. We also hypothesized that healthcare access (e.g., adequate health insurance) would be associated with reduced risk of adverse family impact among young children born prematurely.…”

Section: Introductionmentioning

confidence: 99%

Healthcare access and adverse family impact among U.S. children ages 0–5 years by prematurity status

et al. 2020

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Background: Many children and their families are affected by premature birth. Yet, little is known about their healthcare access and adverse family impact during early childhood. This study aimed to (1) examine differences in healthcare access and adverse family impact among young children by prematurity status and (2) determine associations of healthcare access with adverse family impact among young children born prematurely. Methods: This was a secondary analysis of cross-sectional 2016 and 2017 National Survey of Children's Health data. The sample included 19,482 U.S. children ages 0-5 years including 242 very low birthweight (VLBW) and 2205 low birthweight and/or preterm (LBW/PTB) children. Prematurity status was defined by VLBW (i.e., < 1500 g at birth) and LBW/PTB (i.e., 1500-2499 g at birth and/or born at < 37 weeks with or without LBW). Healthcare access measures were adequate health insurance, access to medical home, and developmental screening receipt. Adverse family impact measures were ≥ $1000 in annual out-of-pocket medical costs, having a parent cutback or stop work, parental aggravation, maternal health not excellent, and paternal health not excellent. The relative risk of each healthcare access and adverse family impact measure was computed by prematurity status. Propensity weighted models were fit to estimate the average treatment effect of each healthcare access measure on each adverse family impact measure among children born prematurely (i.e., VLBW or LBW/PTB). Results: Bivariate analysis results showed that VLBW and/or LBW/PTB children generally fared worse than other children in terms of medical home, having a parent cutback or stop working, parental aggravation, and paternal health. Multivariable analysis results only showed, however, that VLBW children had a significantly higher risk than other children of having a parent cutback or stop work. Adequate health insurance and medical home were each associated with reduced adjusted relative risk of ≥$1000 in annual out-of-pocket costs, having a parent cutback or stop work, and parental aggravation among children born prematurely. Conclusions: This study's findings demonstrate better healthcare access is associated with reduced adverse family impact among U.S. children ages 0-5 years born prematurely. Population health initiatives should target children born prematurely and their families.

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“…Premature birth is associated with immaturity of major organs and regulatory behaviors, feeding di culties, and slower early growth, leading to longer initial hospitalization and increased economic costs [1][2][3][4][5][6][7][8][9][10][11][12][13][14]. Parents of preterm infants also experience an increase in stress, anxiety, depressive symptoms, and lack of con dence about parenting, which also leads to less optimal parent-infant interaction and adversely impacts infant growth and development [15][16][17][18][19][20][21][22][23][24][25]. Preterm births account for only 10-12% of births in the US, but the cost of preterm birth accounts for more than 40% of the total costs of birth hospitalizations [1,5,7,26,27].…”

Section: Introductionmentioning

confidence: 99%

Protocol for Implementation of an Evidence Based Parentally Administered Intervention for Preterm Infants

White‐Traut

Brandon

Kavanaugh

et al. 2020

Preprint

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BackgroundMulti-sensory behavioral interventions for preterm infants have the potential to accelerate feeding, growth, and optimize developmental trajectories and increase parents’ interactive engagement with their infants. However, few neonatal intensive care units (NICUs) provide evidence-based standardized early behavioral interventions as routine care. Lack of implementation is a major gap between research and clinical practice. H-HOPE, is a standardized behavioral intervention with an infant- directed component (Massage+) and a parent-directed component (four participatory guidance sessions that focus on preterm infants’ behaviors and appropriate responses). H-HOPE has well documented efficacy. The purpose of this implementation study is to establish H-HOPE as the standard of care in 5 NICUs. MethodsThe study employs a Type 3 Hybrid design to simultaneously examine the implementation process and effectiveness in five NICUs. To stagger implementation across the clinical sites, we use an incomplete stepped wedge design. The five participating NICUs were purposively selected to represent different acuity levels, number of beds, locations and populations served. Our implementation strategy integrates our experience conducting H-HOPE and a well-established implementation model, the Consolidated Framework for Implementation Research (CFIR). The CFIR identifies influences (facilitators and barriers) that affect successful implementation within five domains: intervention characteristics, outer setting (the hospital and external events and stakeholders), inner setting (NICU), implementers’ individual characteristics, and the implementation process. NICUs will use the CFIR process, which includes three phases: Planning and Engaging, Executing, and Reflecting and Evaluating. Because sustaining is a critical goal of implementation, we modify the CFIR implementation process by adding a final phase of Sustaining.DiscussionThis study builds on the CFIR, adding Sustaining H-HOPE to observe what happens when sites begin to maintain implementation without outside support, and extends its use to the NICU acute care setting. Our mixed methods analysis systematically identifies key facilitators and barriers of implementation success and effectiveness across the five domains of the CFIR. Long term benefits have not yet been studied but may include substantial health and developmental outcome for infants, more optimal parent-child relationships, reduced stress and costs for families, and substantial indirect societal benefits including reduced health care and special education costs.Trial registrationClinicalTrials.gov registration number NCT04555590, Registered on 8/19/2020

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Infant illness severity and perinatal post-traumatic stress disorder after discharge from the neonatal intensive care unit

Cited by 33 publications

References 33 publications

Post-Traumatic Stress Reactions in Caregivers of Children and Adolescents/Young Adults with Severe Diseases: A Systematic Review of Risk and Protective Factors

Post-Traumatic Stress Reactions in Caregivers of Children and Adolescents/Young Adults with Severe Diseases: A Systematic Review of Risk and Protective Factors

Healthcare access and adverse family impact among U.S. children ages 0–5 years by prematurity status

Protocol for Implementation of an Evidence Based Parentally Administered Intervention for Preterm Infants

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