Precision health: Advancing symptom and self-management science.

BACKGROUND: Precision health considers individual lifestyle, genetics, behaviors, and environment context and facilitates interventions aimed at helping individuals achieve well-being and optimal health. PURPOSE: To present the Nursing Science Precision Health (NSPH) Model and describe the integration of precision health concepts within the domains of symptom and self-management science as reflected in the National Institute of Nursing Research P30 Centers of Excellence and P20 Exploratory Centers. METHODS: Center members developed the NSPH Model and the manuscript based on presentations and discussions at the annual NINR Center Directors Meeting and in follow-up telephone meetings. DISCUSSION: The NSPH Model comprises four precision components (measurement; characterization of phenotype including lifestyle and environment; characterization of genotype and other biomarkers; and intervention target discovery, design, and delivery) that are underpinned by an information and data science infrastructure. CONCLUSION: Nurse scientist leadership is necessary to realize the vision of precision health as reflected in the NSPH Model.

Association Between a Single General Anesthesia Exposure Before Age 36 Months and Neurocognitive Outcomes in Later Childhood.

IMPORTANCE: Exposure of young animals to commonly used anesthetics causes neurotoxicity including impaired neurocognitive function and abnormal behavior. The potential neurocognitive and behavioral effects of anesthesia exposure in young children are thus important to understand. OBJECTIVE: To examine if a single anesthesia exposure in otherwise healthy young children was associated with impaired neurocognitive development and abnormal behavior in later childhood. DESIGN, SETTING, AND PARTICIPANTS: Sibling-matched cohort study conducted between May 2009 and April 2015 at 4 university-based US pediatric tertiary care hospitals. The study cohort included sibling pairs within 36 months in age and currently 8 to 15 years old. The exposed siblings were healthy at surgery/anesthesia. Neurocognitive and behavior outcomes were prospectively assessed with retrospectively documented anesthesia exposure data. EXPOSURES: A single exposure to general anesthesia during inguinal hernia surgery in the exposed sibling and no anesthesia exposure in the unexposed sibling, before age 36 months. MAIN OUTCOMES AND MEASURES: The primary outcome was global cognitive function (IQ). Secondary outcomes included domain-specific neurocognitive functions and behavior. A detailed neuropsychological battery assessed IQ and domain-specific neurocognitive functions. Parents completed validated, standardized reports of behavior. RESULTS: Among the 105 sibling pairs, the exposed siblings (mean age, 17.3 months at surgery/anesthesia; 9.5% female) and the unexposed siblings (44% female) had IQ testing at mean ages of 10.6 and 10.9 years, respectively. All exposed children received inhaled anesthetic agents, and anesthesia duration ranged from 20 to 240 minutes, with a median duration of 80 minutes. Mean IQ scores between exposed siblings (scores: full scale = 111; performance = 108; verbal = 111) and unexposed siblings (scores: full scale = 111; performance = 107; verbal = 111) were not statistically significantly different. Differences in mean IQ scores between sibling pairs were: full scale = -0.2 (95% CI, -2.6 to 2.9); performance = 0.5 (95% CI, -2.7 to 3.7); and verbal = -0.5 (95% CI, -3.2 to 2.2). No statistically significant differences in mean scores were found between sibling pairs in memory/learning, motor/processing speed, visuospatial function, attention, executive function, language, or behavior. CONCLUSIONS AND RELEVANCE: Among healthy children with a single anesthesia exposure before age 36 months, compared with healthy siblings with no anesthesia exposure, there were no statistically significant differences in IQ scores in later childhood. Further study of repeated exposure, prolonged exposure, and vulnerable subgroups is needed.

Understanding parental behavior in pediatric palliative care: Attachment theory as a paradigm.

OBJECTIVE: The objective of this conceptual paper was to present important constructs in attachment theory as they apply to parent and caregiver behavior in pediatric palliative care. Clarification of these constructs is provided with specific reference to their clinical application as well as their reflection in current empirical literature. Social attachment theory is proposed as a developmentally contextual model for the study of parenting in pediatric palliative and end-of-life care. METHOD: A comprehensive search was conducted of pertinent literatures. These included classic as well as recent theory and research in attachment theory in addition to the empirical literatures on parent and family experience in pediatric palliative care, serious illness, and beyond to parental bereavement. Other relevant literature was examined with respect to the phenomena of concern. RESULTS: The empirical literature in pediatric palliative care supports the use of central concepts in attachment theory as foundational for further inquiry. This is evidenced in the emphasis on the importance of parental protection of the child, as well as executive activities such as decision making and other prominent parental operations, parental psychological resolution of the child's diagnosis and illness as well as coping and meaning making, and the core significance of parental relationships with providers who provide secure-base and safe-haven functions. SIGNIFICANCE OF RESULTS: The promise for developing integrated, conceptually based interventions from construction through implementation is of urgent importance to children and families receiving pediatric palliative care services. Focusing on key parental behaviors and processes within the context of a well-studied and contextually appropriate model will inform this task efficiently. The attachment paradigm meets these criteria and has promise in allowing us to move forward in developing well-defined, inclusive, and conceptually grounded protocols for child and family psychosocial research, practice, and education in this specialty.

Recidivism after release from a prison nursery program.

OBJECTIVE: To analyze 3-year recidivism after release from a prison nursery, a secure unit that allows imprisoned women to care for their infants. DESIGN AND SAMPLE: Descriptive study of 139 women who co-resided with their infants between 2001 and 2007 in a New York State prison nursery. MEASURES: Administrative criminal justice data were analyzed along with prospective study data on demographic, mental health, and prison nursery policy-related factors. RESULTS: Results reflect a sample of young women of color with histories of clinically significant depressive symptoms and substance dependence, who were convicted of nonviolent crimes and had multiple prior arrests. Three years after release 86.3% remained in the community. Only 4% of women returned to prison for new crimes. Survival modeling indicated that women who had previously violated parole had a significantly shorter mean return to prison time than those who were in the nursery for a new crime. CONCLUSION: Women released from a prison nursery have a low likelihood of recidivism. Innovative interventions are needed to address incarceration's public health effects. Nurses can partner with criminal justice organizations to develop, implement, and evaluate programs to ensure the health needs of criminal justice involved people and their families are met.

Preschool Outcomes of Children Who Lived as Infants in a Prison Nursery.

This study examined long-term outcomes of children who spent their first one to eighteen months in a US prison nursery. Behavioral development in 47 preschool children who lived in a prison nursery was compared with 64 children from a large national dataset who were separated from their mothers because of incarceration. Separation was associated with significantly worse anxious/depressed scores, even after controlling for risks in the caregiving environment. Findings suggest that prison nursery co-residence with developmental support confers some resilience in children who experience early maternal incarceration. Co-residence programs should be promoted as a best practice for incarcerated childbearing women.

Predictors of post-release research retention and subsequent reenrollment for women recruited while incarcerated.

Correctional facilities are prime targets for nursing interventions to decrease health disparities, but challenges to post-release follow-up limit use of the longitudinal research designs needed to fully examine intervention effects. Using an adapted version of the Behavioral Model for Vulnerable Populations, we determined predictors of 1-year post-release study retention and subsequent reenrollment an average of 3 years later in 88 mother and child dyads recruited from a state prison nursery. Predisposing characteristics and enabling factors emerged as strong predictors of loss to follow-up. Female research participants can be successfully retained years after release from a correctional facility. Understanding the barriers and facilitators to post-release follow-up supports the creation of theoretically informed strategies to retain formerly incarcerated populations.

Planning with parents for seriously ill children: preliminary results on the development of the parental engagement scale.

OBJECTIVE: The objective of this study was to develop a clinically relevant tool to assess parental engagement in decision making and planning for seriously ill children during palliative care consultations. Although little is known about the structure and process of planning meetings between parents and providers, less is known about the nature of parental engagement as it relates to decision making ability in pediatric end-of-life care. Using attachment and caregiving as a framework, this study clarified important dimensions of parental engagement. METHOD: Using a multi-phase, template-matching technique, both literature and pediatric palliative care consultation data were analyzed, iteratively reviewed, matched, and categorized to create a measure of parental engagement. The attachment paradigm serves as the theoretical framework for the study, which focuses on parental engagement in decision making as a caregiving system function. Attachment and related literatures as well as coping and pediatric palliative care literatures were used in the initial conceptual sampling phase. RESULTS: The study yielded two groups of findings. The first set of findings centered on the findings of the literature and consultation template-matching phases of the work. These two phases yielded a conceptual model of parental engagement as a psychobehavioral complex consisting of three dimensions: information-centered dialogue, insightful participation, and achievement of a collaboratively agreed-upon plan. The final phases consisted of creation of a 9 point Parental Engagement Scale, scoring of the consultations, and establishment of initial inter- rater reliability at .80. Psychometric testing continues. SIGNIFICANCE OF RESULTS: Parental engagement in decision making is a critical area for study and intervention. If we can support parents in their caregiving executive functions while understanding the psychological and emotional underpinnings of the caregiving system and parental engagement itself, we can move inquiry forward in understanding parental needs for intervention during this most profoundly challenging time.

Parent self-efficacy for managing pain in seriously ill children and adolescents nearing end of life.

OBJECTIVE: Using data from a multi-site study of parent-child symptom reporting concordance, this secondary analysis explored the role of parent self-efficacy related to pain management for seriously ill school-age children and adolescents. METHOD: In the initial study, 50 children and adolescents who were expected to survive 3 years or less were recruited along with their parent/primary caregiver. Parent self-report data were used in this secondary analysis to describe parent self-efficacy for managing their child's pain, caregiver strain, mood states, and perception of the child's pain; to explore relationships among these variables; and to determine predictors of greater self-efficacy. RESULTS: Parents expressed a wide range of self-efficacy levels (Chronic Pain Self-Efficacy Scale; possible range 10-100, mean 76.2, SD 14.7) and higher levels on average than reported previously by family caregivers of adult patients. Caregiver Strain Index scores were markedly high (possible range 0-13, mean 8.1, SD 3.8) and inversely correlated with self-efficacy (r = -0.44, p = 0.001). On the Profile of Mood States parents reported more negative moods (t = 4.0, p < 0.001) and less vigor (t = -5.0, p < 0.001) than adults in a normative sample, yet vigor rather than mood disturbance predicted self-efficacy. With the exception of child age, self-efficacy was not associated with demographics (child gender, ethnicity, household income, parent age, education, family size) or with the diagnostic groups (primarily cardiac and oncologic) comprising the sample. Younger child age, less caregiver strain, more parent vigor, and parent perception that child is without pain predicted more than half of the variance in parent self-efficacy (R2 = 0.51). SIGNIFICANCE OF RESULTS: Findings advance knowledge of parent self-efficacy in managing the pain of a child with life-threatening illness. Results can be used to design supportive interventions enhancing parents' caregiving roles during their child's last stages of life.

Attachment organization in a sample of incarcerated mothers: distribution of classifications and associations with substance abuse history, depressive symptoms, perceptions of parenting competency and social support.

We report attachment classifications in a sample of pregnant women incarcerated in a state prison with a nursery program. Analyses were based on 69 women serving sentences for felony crimes who were followed from the birth of their child to completion of the prison nursery co-residence. They completed the Adult Attachment Interview shortly after entering the program and scales measuring depression, perceived parenting competency, and social support at study entry (Time 1) and program completion (Time 2). Incarcerated mothers had higher rates of insecure attachment than previous low-risk community samples. Compared with dismissing and secure mothers, preoccupied mothers reported higher levels of depressive symptoms, lower parenting competency, and lower satisfaction with social support at the conclusion of the nursery program. Higher scores on unresolved loss and derogation were associated with a history of substance abuse; higher scores on unresolved trauma were associated with depressive symptoms at program completion.

Outcomes Research in Vulnerable Pediatric Populations.

The Pediatric Anesthesia and Neurodevelopment Assessment (PANDA) study team held its biennial symposium in April 2018 to discuss issues on anesthetic neurotoxicity in the developing brain. One of the sessions invited speakers with different areas of expertise to discuss "Outcomes Research in Vulnerable Pediatric Populations." The vulnerable populations included neonates, children with congenital heart disease, children from low socioeconomic status, and children with incarcerated parents. Each speaker presented some of the ongoing research efforts in these groups as well as the challenges encountered in studying them.

Nurse characteristics and inferences about children's pain.

The purpose of this study was to describe pediatric nurses' projected responses to children's pain as described in vignettes of hospitalized children and to explore nurse characteristics that might influence those responses. A survey was mailed to a national random sample of 700 RNs, and 334 nurses responded. The survey included case reports of three hospitalized school-aged children experiencing pain. Nurses were asked to rate their perceptions of the children's pain levels and to indicate how much analgesia they would recommend. Contrary to earlier studies, in response to the scenarios, nurses in this sample perceived high levels of pain, said they would administer doses of analgesia close to the maximum prescribed by physicians, and recommended an array of non-pharmacologic methods to treat pain. Variation in pain perceptions and decisions was not related to key personal and professional characteristics of the nurses, including their education level, race/ethnicity, age, years of clinical experience, and receipt of continuing education about pain. Findings from this large national study suggest that most nurses would make appropriate decisions relating to the treatment of children's pain, perhaps reflecting changes in the emphasis on pain management.

Mentoring Nurses in Political Skill to Navigate Organizational Politics.

Objective. The aim of this study was to describe and analyze the correlations between mentoring functions and political skill development among nurses who have earned or are candidates for a Ph.D. or doctorate of nursing practice (DNP) degree. Background. The healthcare system is in flux; future generations of Ph.D. and DNP nurse leaders will be required to demonstrate political acumen. Political skill to navigate organizational politics has had limited research within nursing. Methods. A cross-sectional research design using a web-based survey of 222 nurses who have earned or are candidates for a Ph.D. or DNP. This study utilized two validated tools to measure mentoring functions and political skill. Results. The response rate was 52% (n = 115) of which 86 were Ph.D. and 29 were DNPs. An informal mentoring relationship was described by 62% of the respondents and formal mentoring by 35% of the protégés; only 25% (n = 74) established a mentoring contract. Mentoring score showed significance for total political skill and moderate effect on the networking ability. The mentoring functions of advocacy, career development facilitation, learning facilitation, and friendship were found to correlate significantly with total political skill scores. Conclusions. This study established a benefit for nurses who have earned or are candidates for a Ph.D. or DNP from mentoring to support political skill development.

A mentored experience (KO1) in maternal-infant research.

Funding mechanisms that require a mentor provide a unique opportunity to implement the research mentoring that is recognized as increasingly important in nursing. Little has been written about how to create and sustain the roles of mentor and principal investigator within a funded arrangement. This article analyzes one research mentoring relationship focused on maternal-infant interaction research and implemented through the Federal KO1 (Mentored Research Scientist Development Award) grant mechanism. Methods used are personal reflections on the 4-year mentorship experience and literature review using the National Library of Medicine database from 1990 to 2001. The mentoring relationship within the National Institutes of Health KO1 award is characterized by the personal commitment, common interests, and long-term professional development that are essential qualities of traditional mentoring but differs in that it is structured by the aims, activities, and length of each award. Effective participation requires organization, focus, and self-direction on the part of the mentored principal investigator and expertise, altruism, and generativity on the part of the mentor. A grant-based mentoring relationship can provide mutual benefits to the researcher and mentor but both must attend to sustaining and enriching the relationship.

In Their Own Words: The Experience of Professional Nurses in a Northern Vietnamese Women's Hospital.

Abstract Background Nurses in Vietnam, as is typical of many low-income countries, are hampered from impacting health outcomes by low occupational status, overcrowded hospitals and few career development opportunities. In order to understand the current practice environment encountered by nurses in Vietnam in the most realistic way, we listened to the voices of nurses currently performing nursing roles in Vietnam. Purpose The purpose of this study was to explore the emic (insider) perspectives on cultural meaning applied by nurses at a northern Vietnamese women�s hospital to influence professional practice and interpret experience. Design A micro-ethnography approach was used. Methods Seven nurses and one vice-Dean of a school of nursing were interviewed. Data collection consisted of open-ended interviews, participant observation and journal recordings. Spradley�s (1979, 1980) Development Research Sequence was used to guide data collection and analysis. Results/Findings Five themes emerged. These were the big number of patients is a burden for nurses; nurses do not, cannot make their own decisions (but they can and do); my feeling depends on doctor's feeling; nurses learn more from doctor; and just a few nurses can attend the [Vietnamese Nurses Association] meeting. Conclusion The experiences described by the nurses and the vice-Dean of a nursing school reflect the challenges of practicing nursing in one Vietnamese hospital and the resourcefulness of nurses in overcoming those challenges. Recurrent themes highlight the need to better position nurses in Vietnam to advance towards full expression of the professional nursing role.

Pediatric surgeons and anesthesiologists expand the dialogue on the neurotoxicity question, rationale for early and delayed surgeries, and practice changes while awaiting definitive evidence.

The Pediatric Anesthesia NeuroDevelopment Assessment team at Columbia University Medical Center Department of Anesthesiology convened its fourth biennial Symposium to address unresolved issues concerning potential neurotoxic effects of anesthetic agents and sedatives on young children and to assess study findings to date. Dialogue initiated at the third Symposium was continued between anesthesiologists, researchers, and a panel of expert pediatric surgeons representing general surgery and dermatology, orthopedic, and urology specialties. The panel explored the need to balance benefits of early surgery using improved technologies against potential anesthetic risks, practice changes while awaiting definitive answers, and importance of continued interprofessional dialogue.

Maternal Separations During the Reentry Years for 100 Infants Raised in a Prison Nursery.

Prison nurseries prevent maternal separations related to incarceration for the small subset of children whose pregnant mothers are incarcerated in states with such programs. For a cohort of 100 children accepted by corrections into one prison nursery, subsequent separation patterns are analyzed. The largest numbers are caused by corrections' removal of infants from the nursery and infants reaching a one-year age limit. Criminal recidivism and substance abuse relapse threaten continued mothering during reentry. Focused and coordinated services are needed during prison stay and reentry years to sustain mothering for women and children accepted into prison nursery programs.

Elective procedures and anesthesia in children: pediatric surgeons enter the dialogue on neurotoxicity questions, surgical options, and parental concerns.

The Pediatric Anesthesia NeuroDevelopment Assessment research group at Columbia University Medical Center Department of Anesthesiology has conducted biannual national Symposia since 2008 to evaluate study data and invigorate continued thinking about unresolved issues of pediatric anesthesia neurotoxicities. The third Symposium extended the dialogue between pediatric anesthesiologists and surgeons in panel presentations and discussions by four surgical specialists. This paper reports the prevailing opinions expressed by a pediatric general surgeon, urologist, plastic surgeon and ophthalmologist and explores factors related to delayed operative intervention, need for multiple procedures, and parental concerns.

Feasibility and pilot study of the Pediatric Anesthesia NeuroDevelopment Assessment (PANDA) project.

BACKGROUND: Animal studies have documented that exposure of the developing brain to commonly used anesthetic agents induces neurotoxicity and late abnormal neurobehavioral functions as adults. Results from clinical studies have all been analyzed using existing data sets, and these studies produced inconsistent results. To provide more definitive evidence to address the clinical relevance of anesthetic neurotoxicity in children, an interdisciplinary team of investigators designed and developed the Pediatric Anesthesia NeuroDevelopment Assessment (PANDA) project. We present pilot study results in 28 sibling pairs recruited and tested at the Columbia University Medical Center (CUMC) and Children's Hospital of Boston (CHB) for the PANDA project. METHODS: The PANDA project uses an ambidirectional cohort design. We performed prospective neuropsychological assessment in 28 exposed-unexposed sibling pairs from 6 to 11 years of age. The exposed siblings were ASA 1 or 2 and had received a single episode of anesthesia for inguinal hernia repair before the age of 36 months and the unexposed siblings had no anesthesia before the age of 36 months. All the sibling pairs were English speaking and were 36 weeks of gestational age or older. Each sibling pair underwent a direct testing using the Wechsler Abbreviated Scale of Intelligence (WASI) and the NEuroPSYchological Assessment, second edition (NEPSY II), and the parents completed questionnaires related to behavior using CBCL and Conners rating. Data are presented as means±SD. We conducted descriptive analyses of the demographic data. We compared both the exposed and the unexposed sibling groups on WASI and NEPSY II, and total and T scores from CBCL and Conners rating were analyzed as continuous data using the paired t test between the two groups. A P<0.05 was considered significant. RESULTS: After the Institutional Review Board approval for the study at both CUMC and CHB, the full PANDA study protocol was implemented to perform a pilot feasibility study. Our success rate was 96.7% in obtaining detailed medical and anesthesia records in our historical cohort. The scores for verbal IQ (exposed=106.1±16.3, unexposed=109.2±17.9), performance IQ (exposed=109.1±16.0, unexposed=113.9±15.9), and full IQ (exposed=108.2±14.0, unexposed=112.8±16.8) were comparable between the siblings. There were no differences between the two groups in T scores for any of the NEPSY II subdomains, CBCL, or Conners rating. An abstraction protocol with web-based electronic data capture forms also was developed in conjunction with the International Center for Health Outcomes and Innovation Research (InCHOIR). CONCLUSIONS: The pilot study provided useful information for feasibility to recruit the sample size and to obtain relevant clinical data. For the final study protocol, both the neuropsychological battery and the age range for testing were revised. Our results confirmed the feasibility of our study approach and yielded pilot data from neuropsychological testing.