OBJECTIVE: To examine the relationship between emotional distress and mother-preterm infant interactions among mothers who used skin-to-skin care and to explore their experiences of childbirth and continuous skin-to-skin care. DESIGN: A sequential, explanatory, mixed-methods design. SETTING: A neonatal nursery in a tertiary-level hospital in Malawi. PARTICIPANTS: Forty-four mother-preterm infant dyads; we interviewed 15 of these mothers. METHODS: We administered surveys to assess emotional distress (i.e., depression, anxiety, posttraumatic stress, and worry about infant health) and video-recorded mother-infant interactions. We used regression analysis to assess the relationship between indicators of emotional distress and mother-infant interactions and further examined whether skin-to-skin care was associated with maternal distress. We used in-depth interviews to collect qualitative data and used content analysis to identify common themes. RESULTS: Symptoms of emotional distress were negatively associated with the frequency of infant negative behaviors and gestures, infant smiling, and mother looking and infant smiling when we controlled for the number of days administering continuous skin-to-skin care, gestational age, and severity of the infant's condition. Mothers reported that they felt stressed by providing continuous skin-to-skin care but appreciated its positive effects on the infant. CONCLUSION: Emotional distress while providing continuous skin-to-skin care was associated with poorer mother-preterm infant interactions The mental distress that mothers undergo while delivering continuous skin-to-skin care to their infants can be draining. It is essential for nurses to offer the required psychological support to enhance maternal mental health and encourage positive infant behavior and development. Health care systems need to support this level of nursing care.
This study aimed to explore whether differences exist in anesthesia care providers' use of intraoperative medication between African American and non-Hispanic White patients in adult surgical patients who underwent noncardiothoracic nonobstetric surgeries with general anesthesia. A retrospective observational cohort study used electronic health records between January 1, 2018 and August 31, 2019 at a large academic health system in the southeastern United States. To evaluate the isolated impact of race on intraoperative medication use, inverse probability of treatment weighting using the propensity scores was used to balance the covariates between African American and non-Hispanic White patients. Regression analyses were then performed to evaluate the impact of race on the total dose of opioid analgesia administered, and the use of midazolam, sugammadex, antihypotensive drugs, and antihypertensive drugs. Of the 31,790 patients included in the sample, 58.9% were non-Hispanic Whites and 13.6% were African American patients. After adjusting for significant covariates, African American patients were more likely to receive midazolam premedication (p < .0001; adjusted odds ratio [aOR] = 1.17, 99.9% CI [1.06, 1.30]), and antihypertensive drugs (p = .0002; aOR = 1.15, 99.9% CI [1.02, 1.30]), and less likely to receive antihypotensive drugs (p < .0001; aOR = 0.85, 99.9% CI [0.76, 0.95]) than non-Hispanic White patients. However, we did not find significant differences in the total dose of opioid analgesia administered, or sugammadex. This study identified differences in intraoperative anesthesia care delivery between African American and non-Hispanic White patients; however, future research is needed to understand mechanisms that contribute to these differences and whether these differences are associated with patient outcomes.
BACKGROUND: Postpartum women experience an array of psychological symptoms that are associated with adverse health behaviors and outcomes including postpartum suicidal ideation and long-term depression. To provide early management of postpartum psychological symptoms, it is important to understand how the symptom experiences change over time. OBJECTIVE: The aim of this study was to examine maternal psychological symptom trajectories over 2, 6, 15, and 24 months postpartum using latent class growth analysis and to examine how each trajectory is associated with maternal depression outcome at 24 months. METHODS: We used secondary data from the Family Life Project ( N = 1,122) and performed multitrajectory latent class growth analysis based on four observed symptom variables (depression, anxiety, somatization, and hostility). After the final model was identified, bivariate analyses were conducted to examine the association between each trajectory and (a) individual characteristics and (b) outcome (Center for Epidemiologic Studies Depression Scale [CES-D]) variables. RESULTS: A four-class model was selected for the final model because it had better fit indices, entropy, and interpretability. The four symptom trajectories were (a) no symptoms over 24 months, (b) low symptoms over 24 months, (c) moderate symptoms increasing over 15 months, and (d) high symptoms increasing over 24 months. More postpartum women with the trajectory of high symptoms increasing over 24 months (Trajectory 4) were in low economic status (92.16%), unemployed (68.63%), or did not complete 4-year college education (98.04%). Most postpartum women (95.56%) in Trajectory 4 also had higher CES-D cutoff scores, indicating a possible clinical depression at 24 months postpartum. DISCUSSION: Postpartum women who experience increasing symptom trajectories over 15-24 months (Trajectories 3 and 4) could benefit from tailored symptom management interventions provided earlier in the postpartum period to prevent persistent and worsening symptom experiences.
Depression, Postpartum , Latent Class Analysis , Mothers , Postpartum Period , Humans , Female , Adult , Postpartum Period/psychology , Depression, Postpartum/psychology , Mothers/psychology , Time Factors
Postpartum women experience multiple, co-occurring postpartum symptoms. It is unknown if social determinants of health (SDOH) influence postpartum symptom typologies. This secondary analysis used the Community and Child Health Network study data. Participants included for analysis varied depending on the availability of the SDOH data (N = 851 to 1784). Bivariate and multiple regression analyses were conducted to examine the association between SDOH and previously identified postpartum symptom typologies. Area under the receiver operating characteristics curve (AUROC) was calculated to examine if adding SDOH variables contributes to predicting postpartum symptom typologies. The adjusted odds (aOR) of being in high symptom severity or occurrence typologies were greater for participants who had less than high school education (aOR = 2.29), experienced healthcare discrimination (aOR = 2.21), used governmental aid (aOR = 2.11), or were food insecure (aOR = 2.04). AUROC improved after adding SDOH. Considering experiences of different social-economic hardships influence postpartum symptom typologies, future practice and research should address SDOH to improve postpartum symptom experiences.
BACKGROUND: An increased allostatic load (cumulative physiologic wear and tear of the body) can lead to adverse health outcomes. Symptom experiences are known to influence allostatic load. Yet, the relationships between postpartum symptom typologies and maternal allostatic load remain unknown. METHODS: We used Community Child Health Network data and included participants with allostatic load data at 6, 12, or 24 months postpartum. Bivariate and multivariate analyses were conducted to examine associations between postpartum symptom typologies and (a) overall allostatic load, (b) allostatic load subscales for body systems (neuroendocrine, cardiovascular, metabolic, and inflammatory), and (c) individual biomarkers within the subscale. RESULTS: Overall allostatic load at 12 months postpartum was different by symptom typologies before (p = .042) and after adjusting for confounders (p = .029). Postpartum women in typology 5 (high overall) had the highest adjusted overall allostatic load (M = 4.18, SE = .27). At 12 months, adjusted allostatic load for the cardiovascular subscale was higher in typologies 3 (moderate-high sleep symptoms, M = 1.78, SE = .13) and 5 (high overall, M = 1.80, SE = .17). Within the cardiovascular subscale, those in typology 3 had higher adjusted odds for a clinically significant level of pulse rate (aOR = 2.01, CI = 1.22, 3.31). CONCLUSION: Postpartum women who experienced high symptom severity across all symptoms (typology 5) at 6 months had higher overall allostatic load at 12 months postpartum. Typologies 3 and 5 had the highest symptom severity in sleep-related symptoms and higher cardiovascular subscale scores. Postpartum symptom management should target symptom burden in an effort to reduce allostatic load thereby improving postpartum women's health outcomes.
Allostasis , Child , Humans , Female , Allostasis/physiology , Postpartum Period , Biomarkers
To identify subgroups of postpartum women with different psychological symptom profiles at 2 and 6 months postpartum and to examine how they transition between symptom profiles over time using latent transition analysis (LTA). We used secondary data from the Family Life Project (N = 1,117) and performed LTA based on observed variables (depression, anxiety, somatization, and hostility). We examined transition probabilities and changes in latent status prevalence from 2 to 6 months postpartum. Considering the known influences of social determinants of health on psychological symptoms, bivariate analyses were conducted to describe the characteristics of different transition patterns. A 3-class model with better fit indices, entropy, and interpretability was selected. Based on symptom severity, the identified profiles were Profile 1: Low, Profile 2: Moderate, and Profile 3: High. From 2 to 6 months postpartum, the prevalence of low symptom profile decreased (82 to 78.2%) while the prevalence increased for moderate (15.8 to 17.5%) and high symptom profiles (2.2 to 4.4%). For all profiles, it was most likely for postpartum women to stay in the same profile from 2 to 6 months (low to low, moderate to moderate, and high to high). Those in persistent or worsening transition patterns were significantly younger or had less social support or education. Postpartum women in moderate or high symptom profiles at 2 months were most likely to stay in the same profile at 6 months postpartum, indicating persistent symptom burden. Clinicians should consider providing early, targeted support to prevent persistent symptom burden.
Anxiety , Postpartum Period , Female , Humans , Postpartum Period/psychology , Anxiety/epidemiology , Anxiety Disorders/psychology , Mothers/psychology
PURPOSE: To identify tidal volume (VT) and positive end-expiratory pressure (PEEP) associated with the lowest incidence and severity of postoperative pulmonary complications (PPCs) for each phenotype based on preoperative characteristics. METHODS: The subjects of this retrospective observational cohort study were 34,910 adults who underwent surgery, using general anesthesia with mechanical ventilation. Initially, the least absolute shrinkage and selection operator regression was employed to select relevant preoperative characteristics. Then, the classification and regression tree (CART) was built to identify phenotypes. Finally, we computed the area under the receiver operating characteristic curves from logistic regressions to identify VT and PEEP associated with the lowest incidence and severity of PPCs for each phenotype. RESULTS: CARTs classified seven phenotypes for each outcome. A probability of the development of PPCs ranged from the lowest (3.51%) to the highest (68.57%), whereas the probability of the development of the highest level of PPC severity ranged from 3.3% to 91.0%. Across all phenotypes, the VT and PEEP associated with the most desirable outcomes were within a small range of VT 7-8 ml/kg predicted body weight with PEEP of between 6 and 8 cmH2O. CONCLUSIONS: The ranges of optimal VT and PEEP were small, regardless of the phenotypes, which had a wide range of risk profiles.
AIM: To delineate between the concepts of parental presence, participation, and engagement in paediatric hospital care. DESIGN: The concepts' uses in the literature were analysed to determine attributes, influences, and relationships. METHODS: Delineations of each concept are established and conceptual definitions are proposed following Morses' methods. DATA SOURCES: MEDLINE (PubMed); CINAHL, PsycINFO, Sociology Source Ultimate (EBSCOhost); Embase, Scopus (Elsevier); Google Scholar. Search dates October 2021, February 2023. RESULTS: Multinational publications dated 1991-2023 revealed these concepts represent a range of parental behaviours, beliefs, and actions, which are not always perceptible to nurses, but which are important in family-integrated care delivery. Parental presence is the state of a parent being physically and/or emotionally with their child. Parental participation reflects parents' performing caregiving activities with or without nurses. Parental engagement is a parents' state of emotional involvement in their child's health and the ways they act on their child's behalf. CONCLUSION: These concepts' manifestations are important to parental role attainment but may be inadequately understood and considered by healthcare providers. IMPLICATIONS: Nurses have influence over parents' parental presence, participation, and engagement in their child's care but need support from healthcare institutions to ensure equitable family-integrated care delivery. IMPACT: Problem: Lack of clear definition among these concepts results in incomplete and at times inequitable family-integrated care delivery. FINDINGS: Parental presence is an antecedent to parental participation, and parental presence and participation are elements of parental engagement. The concepts interact to influence one another. IMPACT: Hospitalized children, their families, nurses, and researchers will benefit through a better understanding of the concepts' attributes, interactions, and implications for enhanced family-integrated care delivery.
Many postpartum women experience postpartum symptoms which often occur in clusters (i.e., three or more co-occurring symptoms that are related to each other). To date, research has focused on individual symptoms, which limits our understanding of how postpartum symptom clusters manifest and influence health. This secondary analysis used the Community and Child Health Network study data (N = 1784). No patient or public directly participated or contributed to the current analysis. Guided by the Symptom Management Theory, latent class analysis was performed to identify subgroups of postpartum women with different symptom experiences using observed variables at 6 months postpartum: anxiety (MINI-anxiety), general stress (PSS-10), posttraumatic stress (PCL-C), postpartum depression (EPDS), sleep disturbance (PSQI-sleep disturbance), and sleep duration (PSQI-sleep duration). Bivariate and multiple regression analyses were conducted to examine the association between subgroups and (a) individual characteristics and (b) long-term depressive symptoms (CES-D-9) and well-being at 18 and/or 24 months postpartum. Five subgroups were selected that had better-fit indices, entropy, and interpretability. Subgroups were labeled as (1) Minimum overall, (2) Mild-moderate overall, (3) Moderate-high sleep symptoms, (4) High psychological symptoms, and (5) High overall. After adjusting for covariates, postpartum women in Subgroups 4 and 5 had higher CES-D-9 scores at 18 and 24 months and lower well-being scores at 24 months. More postpartum women in Subgroups 4 and 5 experienced a history of depression or unemployment. Clinicians should provide targeted interventions for postpartum women in high-symptom subgroups.
Depression, Postpartum , Depression , Child , Humans , Female , Postpartum Period , Family , Anxiety
OBJECTIVE: To characterize (1) the prevalence of mental health discussion and (2) facilitators of and barriers to parent disclosure of mental health needs to clinicians. STUDY DESIGN: Parents of infants with neurologic conditions in neonatal and pediatric intensive care units participated in a longitudinal decision-making study from 2018 through 2020. Parents completed semi-structured interviews upon enrollment, within 1 week after a conference with providers, at discharge, and 6 months post-discharge. We used a conventional content analysis approach and NVIVO 12 to analyze data related to mental health. RESULTS: We enrolled 61 parents (n = 40 mothers, n = 21 fathers) of 40 infants with neurologic conditions in the intensive care unit. In total, 123 interviews were conducted with 52 of these parents (n = 37 mothers, n = 15 fathers). Over two-thirds of parents (n = 35/52, 67%) discussed their mental health in a total of 61 interviews. We identified two key domains when approaching the data through the lens of mental health: (1) self-reported barriers to communicating mental health needs: parents shared uncertainty about the presence or benefit of support, a perceived lack of mental health resources and emotional support, and concerns about trust; (2) self-reported facilitators and benefits of communicating mental health needs: parents described the value of supportive team members, connecting to peer support, and speaking to a mental health professional or neutral third party. CONCLUSIONS: Parents of critically ill infants are at high risk of unmet mental health needs. Our results highlight modifiable barriers and actionable facilitators to inform interventions to improve mental health support for parents of critically ill infants.
Disclosure , Mental Health , Infant, Newborn , Child , Female , Humans , Infant , Critical Illness/therapy , Critical Illness/psychology , Aftercare , Patient Discharge , Parents/psychology , Intensive Care Units, Neonatal
BACKGROUND & PURPOSE: Relatively little is known about the parents' challenges and coping in making decisions for children with complex, life-threatening conditions. Therefore, this secondary analysis aimed to explore the challenges and coping between parents while navigating their decision-making by focusing on their interpersonal relationship. DESIGN & METHOD: Data from 38 interviews with parent couples of 20 infants diagnosed with congenital heart disease or receiving hematopoietic stem cell transplantation (HSCT) were analyzed using a conventional content analysis. RESULTS: Findings revealed the key challenges between parents in decision-making and how they cope with the challenges together as represented by two main themes of "Challenges faced by parents in making decisions together" and "Parents' collaborative coping with the challenges of making shared decisions." DISCUSSION: The majority of challenges that parents face in making decisions were closely related to the nature of the children's complex and life-threatening illness and uncertainty. However, supportive partner helped coping and decision-making, indicating the vital role of spouses in making decisions for their ill child. IMPLICATIONS: Assessing parents' marital relationship, providing enough information to ensure that both parents clearly understand the information, and encouraging parents to openly communicate with each other are recommended. Educating healthcare providers to support parents to partner together in shared decision-making is also required. Last, legislating laws that mandate providing psychological counseling services and developments of community-based interventions to support parental relationship would improve parents' shared decision-making. Further research on enhancing parental relationships in the context of a child's illness is required.
Decision Making , Parents , Child , Infant , Humans , Parents/psychology , Coping Skills , Qualitative Research
BACKGROUND AND OBJECTIVES: Clinicians often communicate complex, uncertain, and distressing information about neurologic prognosis to parents of critically ill infants. Although communication tools have been developed in other disciplines and settings, none address the unique needs of the neonatal and pediatric neurology context. We aimed to develop a parent-informed framework to guide clinicians in communicating information about neurologic prognosis. METHODS: Parents of infants with neurologic conditions in the intensive care unit were enrolled in a longitudinal study of shared decision-making from 2018 to 2020. Parents completed semistructured interviews following recorded family meetings with the health care team, at hospital discharge, and 6 months after discharge. All interviews targeted information about parent preferences for prognostic disclosure. We analyzed the data using a conventional content analysis approach. Two study team members independently coded all interview transcripts, and discrepancies were resolved in consensus. We used NVIVO 12 qualitative software to index and organize codes. RESULTS: Fifty-two parents of 37 infants completed 123 interviews. Parents were predominantly mothers (n = 37/52, 71%) with a median age of 31 (range 19-46) years. Half were Black (n = 26/52, 50%), and a minority reported Hispanic ethnicity (n = 2/52, 4%). Inductive analysis resulted in the emergence of 5 phases of prognostic communication (Approach, Learn, Inform, Give support, and Next steps: ALIGN): (1) Approach: parents appreciated receiving consistent information about their child's neurologic outcome from clinicians who knew their child well. (2) Learn: parents valued when clinicians asked them how they preferred receiving information and what they already knew about their child's outcome prior to information delivery. (3) Inform: parents valued honest, thorough, and balanced information that disclosed prognostic uncertainty and acknowledged room for hope. (4) Give support: parents valued empathic communication and appreciated clinicians who offered real-time emotional support. (5) Next steps: parents appreciated clinicians who connected them to resources, including peer support. DISCUSSION: The ALIGN framework offers a novel, parent-informed strategy to effectively communicate neurologic prognosis. Although ALIGN represents key elements of a conversation about prognosis, each clinician can adapt this framework to their own approach. Future work will assess the effectiveness of this framework on communication quality and prognostic understanding.
Nervous System Diseases , Parents , Child , Infant, Newborn , Female , Humans , Infant , Young Adult , Adult , Middle Aged , Prognosis , Longitudinal Studies , Qualitative Research , Parents/psychology , Nervous System Diseases/diagnosis , Nervous System Diseases/therapy , Communication
Parents of children born with complex life-threatening chronic conditions (CLTCs) experience an uncertain trajectory that requires critical decision making. Along this trajectory, hope plays an influential but largely unexplored role; therefore, this qualitative descriptive study explores how parent and provider hope may influence decision making and care of a child born with CLTCs. A total of 193 interviews from 46 individuals (parents, nurses, physicians, and nurse practitioners) responsible for the care of 11 infants with complex congenital heart disease (CCHD) were analyzed to understand how hope features in experiences related to communication, relationships, and emotions that influence decision making. Overall, parental hope remained strong and played a pivotal role in parental decision making. Parents and professional healthcare providers expressed a range of emotions that appeared to be integrally linked to hope and affected decision making. Providers and parents brought their own judgments, perceptions, and measure of hope to relationships, when there was common ground for expressing, and having, hope, shared decision making was more productive and they developed more effective relationships and communication. Relationships between parents and providers were particularly influenced by and contributory to hope. Communication between parents and providers was also responsible for and responsive to hope.
Decision Making , Parents , Humans , Infant , Communication , Emotions , Parents/psychology , Qualitative Research , Uncertainty
BACKGROUND: Birthing individuals experience various postpartum symptoms which have been associated with adverse health outcomes. Previous systematic reviews have focused on the examination of individual symptoms and their impact on health, which have limited our understanding of postpartum symptom clusters. OBJECTIVE: To examine the compositions of symptom clusters, analytic methodologies and predictors of symptom clusters in birthing individuals up to 1 year postpartum. DESIGN: Systematic review. METHODS: This systematic review was reported following the PRISMA. Five databases were searched: PubMed, Embase, CINAHL Complete, PsycINFO and Scopus. Two reviewers performed title and abstract and full-text screening independently. Standard Quality Assessment Criteria were used to assess the articles' qualities. Key information was extracted into evidence table, which was checked for accuracy and completeness. A narrative synthesis was conducted. RESULTS: A total of 30 articles were included. Studies were conducted in 16 countries, mostly in Europe (n = 9) and North America (n = 7). The majority were quantitative (n = 27) and cross-sectional (n = 27). Factor analysis was the most frequently used analytic methodology (n = 21). All three qualitative studies used grounded theory. Taking into consideration the variations among the studies, stress (n = 15, infant or partner-related and from other sources), depression (n = 12), somatic (n = 12) and anxiety clusters (n = 10) were most frequently identified. Symptom cluster predictors were examined in less than half of the included studies (n = 13). Among these, most were focused on how individual postpartum symptoms influence symptom clusters. CONCLUSIONS: Stress, depression, somatic and anxiety clusters are the most frequently identified postpartum symptom clusters. Future studies should examine the consistency, stability and clinical meaningfulness of these four symptom clusters. RELEVANCE TO CLINICAL PRACTICE: The identification and management of the four symptom clusters should be of particular interest to clinicians and researchers. NO PATIENT OR PUBLIC CONTRIBUTION: This systematic review did not directly involve patient or public contribution to the manuscript.
Parturition , Postpartum Period , Pregnancy , Female , Humans , Syndrome , Cross-Sectional Studies , Anxiety
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 < .005). However, wet diaper weight increased in 80% humidity, but decreased in the 40% humidity over time ( P < .0001). Baseline fluid volume, incubator temperature, and diaper brand did not influence wet diaper weight over time (all P > .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.
Incubators, Infant , Infant Care , Infant, Newborn , Infant , Child , Humans , Pilot Projects , Temperature , Intensive Care Units, Neonatal
Purpose: Family support is essential for women with preterm infants during hospitalization. In low-income countries, the additional burden of infant care due to shortages in nursing staff necessitates that family members (guardians) be physically present to care for woman and the infant. The purpose of this study was to explore the types of support that Malawian women of preterm infants need during hospitalization. Methods: This descriptive qualitative study was conducted at a tertiary level hospital in southern Malawi. We recruited 15 women with preterm infants during hospitalization and conducted in-depth interviews. Data was audio-recorded, transcribed, and analyzed using NVivo. Results: The postpartum women participating this study preferred females and members of the maternal side of their family for guardians. Participants' support needs included physical, financial, emotional, and spiritual support. Barriers such as financial constraints and the lack of accommodations for guardians had left the participants without support persons physically present to help them.
Family , Infant, Premature , Infant, Newborn , Infant , Child , Female , Humans , Hospitalization , Infant Care , Tertiary Care Centers
OBJECTIVE: We characterize the content and role of prognostic discussion for infants with neurologic conditions. METHODS: In this descriptive qualitative study, we prospectively enrolled infants (age < 1 year) in the intensive care unit with a neurologic condition anticipated to have ≥1 family conference about prognosis or goals of care. We audiorecorded family conferences as they occurred. We used a rapid-cycle qualitative approach to identify and refine themes. RESULTS: Forty infants and 61 parents were enrolled; 68 family conferences occurred for 24 infants. The majority of infant cases (n = 23/24, 96%) and conferences (n = 64/68, 94%) included discussion of neurologic prognosis. Common infant diagnoses included prematurity (n = 12, 52%), genetic conditions (n = 9, 35%), and brain malformations (n = 7, 30%). We identified 2 themes relating to the characterization of the infant's prognosis: (1) predictions of impairment and (2) rationale for prognostic predictions. We identified 3 themes characterizing the role of prognostic discussion: (1) aligning parent and clinician understanding of infant outcome, (2) influencing decision-making, and (3) preparing for life at home. We identified 2 themes characterizing discussion of prognostic uncertainty: (1) multilayered types of uncertainty and (2) holding space for hope alongside uncertainty. INTERPRETATION: In this cohort of infants with neurologic conditions and their parents, we identified salient themes characterizing the content and role of discussion about neurologic outcome. Our findings highlight that prognostic discussion focuses on anticipated impairments, informs decision-making, and helps families prepare for home life. Future work should characterize whether these findings align with parent preferences for prognostic disclosure. ANN NEUROL 2022;92:699-709.
Parents , Professional-Family Relations , Family , Humans , Infant , Intensive Care Units , Prognosis , Qualitative Research
