Parents’ Pandemic NICU Experience in the United States: A Qualitative Study

Background Prior to the COVID-19 pandemic, parents of infants in the Neonatal Intensive Care Unit (NICU) frequently reported high levels of stress, uncertainty, and decreased parenting confidence. Early research has demonstrated that parents have had less access to their infants in the hospital due to restrictions on parental presence secondary to the pandemic. It is unknown how parents have perceived their experiences in the NICU since the beginning of the COVID-19 pandemic. The purpose of this study was to describe the lived experience of parents who had an infant in the NICU in the context of the COVID-19 pandemic to inform healthcare providers and policy makers for future development of policies and care planning. Methods The study design was a qualitative description of the impact of the COVID-19 pandemic on parents’ experiences of having an infant in the NICU. Free-text responses to open-ended questions were collected as part of a multi-method study of parents’ experiences of the NICU during the first six months of the pandemic. Participants from the United States were recruited using social media platforms between the months of May and July of 2020. Data were analyzed using a reflexive thematic approach. Findings Free-text responses came from 169 parents from 38 different states in the United States. Three broad themes emerged from the analysis: (1) parents’ NICU experiences during the COVID-19 pandemic were emotionally isolating and overwhelming, (2) policy changes restricting parental presence created disruptions to the family unit and limited family-centered care, and (3) interactions with NICU providers intensified or alleviated emotional distress felt by parents. A unifying theme of experiences of emotional distress attributed to COVID-19 circumstances ran through all three themes. Conclusions Parents of infants in the NICU during the first six months of the COVID-19 pandemic experienced emotional struggles, feelings of isolation, lack of family-centered care, and deep disappointment with system-level decisions. Moving forward, parents need to be considered essential partners in the development of policies concerning care of and access to their infants. Background The COVID-19 pandemic created unprecedented conditions for administrators and clinicians working in Neonatal Intensive Care Units (NICU) and greatly affected parents of infants requiring hospitalization. Prior to the COVID-19 pandemic, parents of infants admitted to a NICU reported high levels of stress, anxiety, uncertainty, and decreased parenting confidence when compared to parents of healthy full-term infants [1,2,3,4,5,6]. Approximately 28–40% of mothers of infants admitted to a NICU were diagnosed with a new mental illness, such as depression or perinatal post-traumatic stress disorder [7]. Fathers of infants requiring NICU hospitalization also reported significant stress and need for reassurance and support [8, 9]

An integrated transcriptome and expressed variant analysis of sepsis survival and death

BackgroundSepsis, a leading cause of morbidity and mortality, is not a homogeneous disease but rather a syndrome encompassing many heterogeneous pathophysiologies. Patient factors including genetics predispose to poor outcomes, though current clinical characterizations fail to identify those at greatest risk of progression and mortality.MethodsThe Community Acquired Pneumonia and Sepsis Outcome Diagnostic study enrolled 1,152 subjects with suspected sepsis. We sequenced peripheral blood RNA of 129 representative subjects with systemic inflammatory response syndrome (SIRS) or sepsis (SIRS due to infection), including 78 sepsis survivors and 28 sepsis non-survivors who had previously undergone plasma proteomic and metabolomic profiling. Gene expression differences were identified between sepsis survivors, sepsis non-survivors, and SIRS followed by gene enrichment pathway analysis. Expressed sequence variants were identified followed by testing for association with sepsis outcomes.ResultsThe expression of 338 genes differed between subjects with SIRS and those with sepsis, primarily reflecting immune activation in sepsis. Expression of 1,238 genes differed with sepsis outcome: non-survivors had lower expression of many immune function-related genes. Functional genetic variants associated with sepsis mortality were sought based on a common disease-rare variant hypothesis. VPS9D1, whose expression was increased in sepsis survivors, had a higher burden of missense variants in sepsis survivors. The presence of variants was associated with altered expression of 3,799 genes, primarily reflecting Golgi and endosome biology.ConclusionsThe activation of immune response-related genes seen in sepsis survivors was muted in sepsis non-survivors. The association of sepsis survival with a robust immune response and the presence of missense variants in VPS9D1 warrants replication and further functional studies.Trial registrationClinicalTrials.gov NCT00258869. Registered on 23 November 2005.Electronic supplementary materialThe online version of this article (doi:10.1186/s13073-014-0111-5) contains supplementary material, which is available to authorized users

Impact of opioid-free analgesia on pain severity and patient satisfaction after discharge from surgery: multispecialty, prospective cohort study in 25 countries

Background: Balancing opioid stewardship and the need for adequate analgesia following discharge after surgery is challenging. This study aimed to compare the outcomes for patients discharged with opioid versus opioid-free analgesia after common surgical procedures.Methods: This international, multicentre, prospective cohort study collected data from patients undergoing common acute and elective general surgical, urological, gynaecological, and orthopaedic procedures. The primary outcomes were patient-reported time in severe pain measured on a numerical analogue scale from 0 to 100% and patient-reported satisfaction with pain relief during the first week following discharge. Data were collected by in-hospital chart review and patient telephone interview 1 week after discharge.Results: The study recruited 4273 patients from 144 centres in 25 countries; 1311 patients (30.7%) were prescribed opioid analgesia at discharge. Patients reported being in severe pain for 10 (i.q.r. 1-30)% of the first week after discharge and rated satisfaction with analgesia as 90 (i.q.r. 80-100) of 100. After adjustment for confounders, opioid analgesia on discharge was independently associated with increased pain severity (risk ratio 1.52, 95% c.i. 1.31 to 1.76; P < 0.001) and re-presentation to healthcare providers owing to side-effects of medication (OR 2.38, 95% c.i. 1.36 to 4.17; P = 0.004), but not with satisfaction with analgesia (beta coefficient 0.92, 95% c.i. -1.52 to 3.36; P = 0.468) compared with opioid-free analgesia. Although opioid prescribing varied greatly between high-income and low- and middle-income countries, patient-reported outcomes did not.Conclusion: Opioid analgesia prescription on surgical discharge is associated with a higher risk of re-presentation owing to side-effects of medication and increased patient-reported pain, but not with changes in patient-reported satisfaction. Opioid-free discharge analgesia should be adopted routinely

Integrating Neonatal Intensive Care Into a Family Birth Center: Describing the Integrated NICU (I-NIC)

BACKGROUND: Parent-infant separation resulting from admission to a neonatal intensive care unit (NICU) is often reported as the most challenging and distressing experience for parents. Aiming to mitigate the stress of parent-infant separation, a new neonatal care model was designed to integrate NIC with delivery and postpartum care. Yet, little is known about the model and its implementation. METHODS: Using a qualitative descriptive design with field observations, we describe the characteristics of an integrated-neonatal intensive care (I-NIC) model and examined perceptions of clinical staff (n = 8) and parents (n = 3). RESULTS: The physical layout of the I-NIC rooms required additional oxygen and suction columns and new signage to specify them as NICU-equipped. Other NICU-related equipment was mobile, thus moved into rooms when necessary. Nurses were cross-trained in labor/delivery, postpartum, neonatal care; however, nurses primarily worked within their specific area of expertise. Clinician and parent perceptions of the model were notably positive, reporting decreased anxiety related to separation, increased ability for chest feeding and skin-to-skin care, and improved interdisciplinary care. CONCLUSION: Future work is needed to understand implementation of the model in other settings, with specific attention to unit architecture, level of NICU care services, patient census, and staff and patient outcomes

Care Coordination Programs for Infants With Complex Conditions: A Systematic Review

CONTEXT: Care coordination programs are becoming more widely available for children with complex conditions, yet we lack an understanding of programs available to infants and their benefits. OBJECTIVE: To summarize characteristics and outcomes associated with care coordination programs for infants with complex conditions. DATA SOURCES: Electronic search of Medline, Embase, Cumulative Index to Nursing and Allied Health Literature, and Web of Science databases for articles published from 2010 to 2021. STUDY SELECTION: Inclusion criteria consisted of (1) peer-reviewed manuscripts about a care coordination program, (2) infants (birth to 1 year) with complex medical conditions, (3) and reported at least 1 infant, parent, or healthcare utilization outcome. DATA EXTRACTION: Data were extracted on program characteristics and outcomes (eg, infant, parent, and healthcare utilization and cost). Results were summarized by program characteristics and outcomes. RESULTS: The search returned 3189 studies. Twelve unique care coordination programs were identified from 17 studies in the final sample. Seven programs were hospital-based and 5 were outpatient-based. Most programs reported improvements with satisfaction with care, increased interactions with healthcare teams, reductions in infant mortality, and in health service use. A few programs reported increased costs related to staffing. LIMITATIONS: Few care coordination programs were identified specifically for infants and thus studies that did not report age categories (ie, infants) may not have been identified. CONCLUSIONS: Care coordination programs demonstrate cost reductions for health systems, families, and insurers and improvement in quality of care. Efforts to increase the uptake and sustain these beneficial programs need further exploration

Impacts of Neonatal Hospitalization on Families during the 2019 Coronavirus Pandemic

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. Study Design Parents were recruited for this online, cross-sectional survey via support groups on social media. Data collection was completed between May 18, 2020 and July 31, 2020. The final sample consisted of 178 parents, who had an infant hospitalized in an NICU between February 1, 2020 and July 31, 2020. The primary outcomes were impact on family life and financial stability, as measured by the Impact on Family scale, an instrument that evaluates changes to family life as a result of infant or childhood illness. Results Of the 178 parent respondents, 173 (97%) were mothers, 107 (59.4%) were non-Hispanic White, and 127 (69.5%) of the infants were born prematurely. Parents reported significant family impact and greater financial difficulty. Extremely premature infants, lower household income, parent mental health, and lower parental confidence were predictive of greater impacts on family life. Conclusion Parents reported significant family and financial impacts during their infant\u27s hospitalization amid COVID-19. Further studies are needed to guide clinical practice and inform family-supportive resources that can mitigate consequences to family well-being

Parents’ pandemic NICU experience in the United States: a qualitative study

Abstract Background Prior to the COVID-19 pandemic, parents of infants in the Neonatal Intensive Care Unit (NICU) frequently reported high levels of stress, uncertainty, and decreased parenting confidence. Early research has demonstrated that parents have had less access to their infants in the hospital due to restrictions on parental presence secondary to the pandemic. It is unknown how parents have perceived their experiences in the NICU since the beginning of the COVID-19 pandemic. The purpose of this study was to describe the lived experience of parents who had an infant in the NICU in the context of the COVID-19 pandemic to inform healthcare providers and policy makers for future development of policies and care planning. Methods The study design was a qualitative description of the impact of the COVID-19 pandemic on parents’ experiences of having an infant in the NICU. Free-text responses to open-ended questions were collected as part of a multi-method study of parents’ experiences of the NICU during the first six months of the pandemic. Participants from the United States were recruited using social media platforms between the months of May and July of 2020. Data were analyzed using a reflexive thematic approach. Findings Free-text responses came from 169 parents from 38 different states in the United States. Three broad themes emerged from the analysis: (1) parents’ NICU experiences during the COVID-19 pandemic were emotionally isolating and overwhelming, (2) policy changes restricting parental presence created disruptions to the family unit and limited family-centered care, and (3) interactions with NICU providers intensified or alleviated emotional distress felt by parents. A unifying theme of experiences of emotional distress attributed to COVID-19 circumstances ran through all three themes. Conclusions Parents of infants in the NICU during the first six months of the COVID-19 pandemic experienced emotional struggles, feelings of isolation, lack of family-centered care, and deep disappointment with system-level decisions. Moving forward, parents need to be considered essential partners in the development of policies concerning care of and access to their infants.http://deepblue.lib.umich.edu/bitstream/2027.42/173645/1/12887_2021_Article_3028.pd

Exploring Environmental Factors Contributing to Fluid Loss in Diapers Placed in Neonatal Incubators

PURPOSE: Assessing fluid output for infants in the neonatal intensive care unit is essential to understanding fluid and electrolyte balance. Wet diaper weights are used as standard practice to quantify fluid output; yet, diaper changes are intrusive and physiologically distressing. Less frequent diaper changes may have physiologic benefits but could alter diaper weights following extended intervals. METHODS: This pilot study examined the impact of initial diaper fluid volume, incubator air temperature and humidity, and diaper brand on wet diaper weight over time. Baseline fluid volume was instilled, and then diapers were placed in a neonatal incubator. Wet diaper weight was assessed longitudinally to determine changes in fluid volume over time. A factorial design with repeated measures (baseline, 3 hours, and 6 hours) was used to explore the effects of diaper brand (brand 1 vs brand 2), baseline fluid volume (3 mL vs 5 mL), and incubator temperature (28°C vs 36°C) and humidity (40% vs 80%) on the trajectory of weight in 80 diapers. RESULTS: Wet diaper weight was significantly reduced over 6 hours (P \u3c .005). However, wet diaper weight increased in 80% humidity, but decreased in the 40% humidity over time (P \u3c .0001). Baseline fluid volume, incubator temperature, and diaper brand did not influence wet diaper weight over time (all P \u3e .05). IMPLICATIONS: Understanding environmental factors that influence the trajectory of wet diaper weight may support clinicians in optimizing the interval for neonatal diaper changes to balance the impact of intrusive care with need to understand fluid volume loss