A Hybrid Pragmatic and Factorial Cluster Randomized Controlled Trial for an Anti-racist, Multilevel Intervention to Improve Mental Health Equity in High Schools.

Systemic racism is pervasive in US society and disproportionately limits opportunities for education, work, and health for historically marginalized and minoritized racial and ethnic groups, making it an urgent issue of social justice. Because systemic racism is a social determinant of health prevalent across multiple social and institutional structures, it requires multilevel intervention approaches using effective designs and analytic methods to measure and evaluate outcomes. Racism is a fundamental cause of poor health outcomes, including mental health outcomes; thus, mental health services and programs that address racism and discrimination are key to promoting positive mental health of racial and ethnic minority youth. While multilevel interventions are well-suited for improving outcomes like youth mental health disparities, their evaluation poses unique methodological challenges, requiring specialized design and analytic approaches. There has been limited methodological guidance provided to researchers on how to test multilevel interventions using approaches that balance methodological rigor, practicality, and acceptability across stakeholder groups, especially within communities most affected by systemic racism. This paper addresses this gap by providing an example of how to rigorously evaluate a hypothetical, theoretically based, multilevel intervention promoting mental health equity in three US school systems using an anti-racist approach intervening at the macro- (i.e., school system), meso- (i.e., school), and micro- (i.e., family and student) levels to improve mental health in adolescents. We describe the design, sample size considerations, and analytic methods to comprehensively evaluate its effectiveness while exploring the extent to which the components interact synergistically to improve outcomes. The methodological approach proposed can be adapted to other multilevel interventions that include strategies addressing macro-, meso-, and micro-levels of influence.

Feasibility and acceptability of measuring positivity resonance in nurse-patient telehealth videoconferencing visits: A mixed-methods observational study.

AIM: To investigate the feasibility and acceptability of the training process, procedures, measures and recruitment strategies necessary for a future investigation to test the reliability and validity of using positivity resonance measures in health care encounters. BACKGROUND: Although the measurement of positivity resonance is promising, and non-participant observation is considered effective, their approaches to studying nurse-patient relationships have not been fully explored. DESIGN: A mixed-methods observational study. METHODS: Video recordings of 30 nurse-patient dyads completing telehealth video visit encounters were edited and coded using behavioural indicators of positivity resonance. A post-visit survey gathered data on the participants' perceptions of positivity resonance and the study procedures. The research team completed memos and procedural logs to provide narrative data on the study's training, coding, recruitment and operational procedures. The study included 33 persons with cancer and 13 oncology nurses engaging in telehealth video visit encounters at an academic oncology ambulatory care center located in the southeastern United States. RESULTS: Study procedures were found to be feasible and acceptable to participants. An adequate sample of participants (N = 46) were enrolled and retained in the study. Interrater reliability, as evidenced by Cohen's weighted kappa, ranged from .575 to .752 and interclass correlation coefficients >.8 were attainable within a reasonable amount of time and with adequate training. Behavioural indicators of positivity resonance were observed in all telehealth visits and reported by the participants in the perceived positivity resonance survey. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist guided reporting. CONCLUSIONS: Designing research around the concept of positivity resonance is an innovative and feasible approach to exploring how rapport is cultivated within nurse-patient relationships. RELEVANCE TO PROFESSIONAL PRACTICE: Measuring positivity resonance may hold promise for exploring patient and nurse outcomes including trust, responsiveness, health-related behaviours, well-being, resilience and satisfaction. REPORTING METHOD: The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist guided the reporting of results to ensure that adequate details of the study were provided to ensure an accurate and complete report. PATIENT OR PUBLIC CONTRIBUTION: Planning of the research design and study procedures was done in consultation with nurse clinicians with experience with telehealth and managers responsible within the practice setting where the study was conducted. This ensured the study procedures were ethical, safe, secure and did not create unnecessary burden to the study participants. The study included collecting data from nurse and patient participants about the acceptability of the study procedures.

Trajectories of Palliative Care Needs in the ICU and Long-Term Psychological Distress Symptoms.

OBJECTIVES: While palliative care needs are assumed to improve during ICU care, few empiric data exist on need trajectories or their impact on long-term outcomes. We aimed to describe trajectories of palliative care needs during ICU care and to determine if changes in needs over 1 week was associated with similar changes in psychological distress symptoms at 3 months. DESIGN: Prospective cohort study. SETTING: Six adult medical and surgical ICUs. PARTICIPANTS: Patients receiving mechanical ventilation for greater than or equal to 2 days and their family members. MEASUREMENTS AND MAIN RESULTS: The primary outcome was the 13-item Needs at the End-of-Life Screening Tool (NEST; total score range 0-130) completed by family members at baseline, 3, and 7 days. The Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7 (GAD-7), and Post-Traumatic Stress Scale (PTSS) were completed at baseline and 3 months. General linear models were used to estimate differences in distress symptoms by change in need (NEST improvement ≥ 10 points or not). One-hundred fifty-nine family members participated (median age, 54.0 yr [interquartile range (IQR), 44.0-63.0 yr], 125 [78.6%] female, 54 [34.0%] African American). At 7 days, 53 (33%) a serious level of overall need and 35 (22%) ranked greater than or equal to 1 individual need at the highest severity level. NEST scores improved greater than or equal to 10 points in only 47 (30%). Median NEST scores were 22 (IQR, 12-40) at baseline and 19 (IQR, 9-37) at 7 days (change, -2.0; IQR, -11.0 to 5.0; p = 0.12). There were no differences in PHQ-9, GAD-7, or PTSS change scores by change in NEST score (all p > 0.15). CONCLUSIONS: Serious palliative care needs were common and persistent among families during ICU care. Improvement in needs was not associated with less psychological distress at 3 months. Serious needs may be commonly underrecognized in current practice.

Child and family factors associated with positive outcomes among youth born extremely preterm.

BACKGROUND: To analyze the relationship of child behavioral and communication disorders, and adverse family events, to later-in-life child health and cognitive function among youth born extremely preterm. METHODS: The study participants were 694 children enrolled in the Extremely Low Gestational Age Newborn Study. At ages 2 and 10, we assessed internalizing and externalizing behaviors, and at age 10, we assessed adverse life events within the family. Associations were evaluated between these child and family factors and positive child health at age 10 years, and global health and cognitive function at age 15 years. RESULTS: Lower T-scores for internalizing or externalizing behaviors at age 2 were associated with more positive health at age 10. The absence of internalizing behaviors at age 10 was associated with better global child health and better cognitive function at age 15. The absence of communication deficits at age 10 was associated with better cognitive function at age 15. The absence of parent job loss was associated with better global child health at age 15. CONCLUSION: Among individuals born extremely preterm, child health and cognitive outcomes might be improved by timely interventions to address child behavioral symptoms and the impact of adverse life events in the family. IMPACT: The absence of child behavioral and communication disorders, and adverse family events, were associated with more positive health, higher global health, and better cognitive function among youth born extremely preterm. Interventions to address behavioral disorders in early childhood, and to reduce the impact of adverse life events on the family, might promote improved health and developmental outcomes for adolescents born extremely preterm.

Challenges and coping between parents in shared decision-making for children with complex, life-threatening conditions: A qualitative content analysis.

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.

When is caring sharing? Primary care provider interdependence and continuity of care.

ABSTRACT: Efforts to improve access to high-quality, efficient primary care have highlighted the need for team-based care. Most primary care teams are designed to maintain continuity of care between patients and primary care providers (PCPs), because continuity of care can improve some patient outcomes. However, PCPs are interdependent because they care for, or share, patients. PCP interdependence, and its association with continuity of care, is not well described. This study describes a measure of PCP interdependence. We also evaluate the association between patient and panel characteristics, including PCP interdependence. Our results found that the extent of interdependence between PCPs in the same clinic varies widely. A range of patient and panel characteristics affect continuity of care, including patient complexity and PCP interdependence. These results suggest that continuity of care for complex patients is sensitive to panel characteristics, including PCP interdependence and panel size. This information can be used by primary care organizations for evidence-based team design.

Health Behavior Profiles Among Midlife Women: Identifying At-Risk Subgroups for Metabolic Syndrome Using Latent Class Analysis.

BACKGROUND: Metabolic syndrome is known as a lifestyle disease that results from poor health behaviors. Yet, little is known about the subgroups of midlife women with distinct health behavior profiles who are at risk for developing metabolic syndrome. PURPOSE: This study aims to identify latent subgroups of midlife women with distinct health behavior profiles (physical activity, alcohol, diet, and smoking), to describe the characteristics of latent subgroups, and to examine the association between latent class membership and future development of metabolic syndrome. METHOD: This is a secondary data analysis using baseline and follow-up data from years 1, 3, 5, and 7 (N = 3,100) from the Study of Women's Health Across the Nation (SWAN). Latent class analysis was used to identify latent subgroups of midlife women based on their distinct health behavior profiles. Bivariate and multiple logistic regression was conducted to examine the individual characteristics of each latent subgroup and its association with the future development of metabolic syndrome. RESULT: A 4-class model was selected: Class 1 (Healthy), Class 2 (Healthy except alcohol), Class 3 (Healthy except diet), and Class 4 (Unhealthy). Significant differences in individual characteristics were found among the four latent classes (p < .001). The regression analysis found that Class 2 had lower odds of developing metabolic syndrome at all future visits with statistical significance reached at visit 3 (p < .05) while Class 4 had higher odds of developing metabolic syndrome at all visits except visit 3 when both compared to Class 1. CONCLUSION: Clinicians should use the study findings to offer personalized approach to promote healthy behaviors and to guide future development of health promotion programs for midlife women.

Symptom Clusters and Key Symptoms Among Midlife Perimenopausal and Postmenopausal Women With and Without Metabolic Syndrome.

BACKGROUND: Midlife perimenopausal and postmenopausal women with metabolic syndrome experience multiple symptoms concurrently. OBJECTIVE: The study objectives were to examine the relationship among symptoms through network visualization and identify and compare symptom clusters and key symptoms across symptom occurrence and symptom severity dimensions in midlife perimenopausal and postmenopausal women with and without metabolic syndrome. METHODS: Cross-sectional data from the Study of Women's Health Across the Nation (Visit 5) were used for analysis. A machine-learning-based network analysis and the Walktrap algorithm were used to fulfill the study objectives. RESULTS: The number and types of symptom clusters differed between the groups. Midlife perimenopausal and postmenopausal women with metabolic syndrome experienced the psychological/somatic/genital cluster (key symptom: frequent mood change), the sleep/urinary cluster (sleep disturbance), and the vasomotor cluster (cold sweat) in the symptom occurrence dimension and the psychological/somatic/sexual cluster (anxiety), the sleep/urinary cluster (sleep disturbance), and the vasomotor/genital cluster (night sweat) in the symptom severity dimension. In contrast, midlife perimenopausal and postmenopausal women without metabolic syndrome experienced the psychological cluster (anxiety), the sleep/somatic/genitourinary cluster (sleep disturbance), and the vasomotor cluster (night sweat) in the symptom occurrence dimension and the psychological/somatic cluster (anxiety), the sleep/urinary cluster (sleep disturbance), the vasomotor cluster (night sweat), and the sexual/genital cluster (vaginal dryness) in the symptom severity dimension. DISCUSSION: The study findings may serve as a knowledge basis for effective assessment and management of symptom clusters and key symptoms in clinical settings and provide directions for future development of targeted symptom management interventions.

Exploring Nurse and Patient Experiences of Developing Rapport During Oncology Ambulatory Care Videoconferencing Visits: Qualitative Descriptive Study.

BACKGROUND: Although videoconferencing between oncology patients and nurses became routine during the pandemic, little is known about the development of clinician-patient rapport in this care environment. Evidence that virtual visits may challenge nurses' ability to form connections with patients, demonstrate empathy, and provide support suggests that videoconferencing may not ensure optimal care for persons with cancer. Establishing rapport during videoconferencing visits (VCVs) is important in oncology nursing, as rapport enables the nurse to provide emotional support and assistance to patients as they navigate their cancer journey. OBJECTIVE: This study investigated the nature of nurse-patient rapport in ambulatory cancer care videoconferencing telehealth visits. Objectives included exploring (1) how patients with cancer and nurses describe experiences of and strategies for cultivating rapport and (2) similarities and differences between rapport in videoconferencing and in-person visits (IPVs). METHODS: In this qualitative descriptive study, interviews were conducted from October 2021 to March 2022 with 22 participants, including patients with cancer (n=10, 45%) and oncology nurses (n=12, 55%), about their experiences of rapport building during VCVs. All interviews were analyzed using conventional content analysis. Data from nurses and patients were analyzed separately using identical procedures, with a comparative analysis of patient and nurse results performed in the final analysis. RESULTS: Most patients in the study had experienced 3-5 video visits within the past 12 months (n=7, 70%). Half of the nurse participants (n=6, 50%) reported having participated in over 100 VCVs, and all had experiences with videoconferencing (ranging from 3 to 960 visits) over the past 12 months. In total, 3 themes and 6 categories were derived from the patient data, and 4 themes and 13 categories were derived from the nurse data. Comparisons of themes derived from participant interviews identified similarities in how nurses and patients described experiences of rapport during VCVs. Three themes fit the collective data: (1) person-centered and relationship-based care is valued and foundational to nurse-patient rapport in oncology ambulatory care regardless of how care is delivered, (2) adapting a bedside manner to facilitate rapport during VCVs is feasible, and (3) nurses and patients can work together to create person-centered options across the care trajectory to ensure quality care outcomes. Barriers to relationship building in VCVs included unexpected interruptions from others, breaks in the internet connection, concerns about privacy, and limitations associated with not being physically present. CONCLUSIONS: Person-centered and relationship-based approaches can be adapted to support nurse-patient rapport in VCVs, including forming a personal connection with the patient and using active listening techniques. Balancing the challenges and limitations with the benefits of videoconferencing is an essential competency requiring additional research and guidelines. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/27940.

Family members' experience of well-being as racial/ethnic minorities raising a child with a neurodevelopmental disorder: A qualitative meta-synthesis.

Raising a child with a neurodevelopmental disorder has often been associated with poorer quality of life and family functioning. Yet, many family members describe themselves as resilient and capable of achieving well-being. Whether and how this occurs in racial/ethnic minority families remains largely unexplored. The aim of this study was to systematically synthesize qualitative studies exploring how families from a racial/ethnic minority background in the United States (1) experienced well-being and (2) responded to challenges they faced while caring for a child diagnosed with three selected neurodevelopmental disorders: autism spectrum disorder, attention deficit hyperactivity disorder, and intellectual disability. A systematic literature search was conducted in November and December of 2019 and updated in October 2021. Three themes were developed based on included studies: "moving toward well-being as a caregiver," "family and culture: impact on well-being," and "community and culture: impact on well-being." The findings in this review indicate that to develop well-being, racial/ethnic minority families faced additional barriers, including racial/ethnic discrimination and stigma within their family and cultural community. The knowledge generated has the potential to identify areas of intervention to promote resilience and well-being in racial/ethnic minority families raising a child with a neurodevelopmental disorder.

Caregivers' perception of the role of the socio-environment on their extremely preterm child's well-being.

PURPOSE: The purpose of this qualitative descriptive study was to explore primary caregivers' perception of how social-environmental characteristics, and their own role as primary caregivers, affected their extremely preterm adolescent's well-being. METHODS: Participants were 20 mothers who identified as the primary caregiver of an adolescent born extremely prematurely (<28 weeks gestation) enrolled in the ELGAN cohort study. Data was collected through individual interviews and was analyzed using inductive content analysis. RESULTS: A total of three themes, and five subthemes, were identified. The two main themes were "familial impact to health and well-being," and "contributors and barriers at the community level." This study described specific familial and community contributors to child and caregiver well-being, including: the importance of advocacy, participating in community activities, and social and familial support networks. CONCLUSIONS: Overall, while there are individual level characteristics that contribute to well-being, a support structure at the family and community level is essential to children born extremely prematurely, and their mother's, well-being. PRACTICE IMPLICATIONS: Healthcare providers caring for these families should understand that not only are extremely preterm youth affected by prematurity, but caregivers are also deeply impacted. Therefore, it is essential that maternal and family care is emphasized by nurses and healthcare providers.

Teaming up in primary care: Membership boundaries, interdependence, and coordination.

OBJECTIVE: Increased demand for quality primary care and value-based payment has prompted interest in implementing primary care teams. Evidence-based recommendations for implementing teams will be critical to successful PA participation. This study sought to describe how primary care providers (PCPs) define team membership boundaries and coordinate tasks. METHODS: This mixed-methods study included 28 PCPs from a primary care network. We analyzed survey data using descriptive statistics and interview data using content analysis. RESULTS: Ninety-six percent of PCPs reported team membership. Team models fell into one of five categories. The predominant coordination mechanism differed by whether coordination was required in a visit or between visits. CONCLUSIONS: Team-based primary care is a strategy for improving access to quality primary care. Most PCPs define team membership based on within-visit task interdependencies. Our findings suggest that team-based interventions can focus on clarifying team membership, increasing interaction between clinicians, and enhancing the electronic health record to facilitate between-visit coordination.

Distinct profiles of multiple co-occurring symptoms in patients with gastrointestinal cancers receiving chemotherapy.

PURPOSE: Identify subgroups of gastrointestinal (GI) cancer patients with distinct multiple co-occurring symptom profiles and evaluate for differences among these subgroups in demographic and clinical characteristics and quality of life (QOL) outcomes. METHODS: Patients with GI cancers (n = 399) completed the Memorial Symptom Assessment Scale (MSAS) that was used to assess for multiple co-occurring symptoms. Latent class analysis (LCA) was used to identify subgroups of patients with distinct symptom profiles using symptom occurrence ratings. Differences in demographic and clinical characteristics and QOL outcomes among the subgroups were evaluated using parametric and nonparametric tests. RESULTS: All Low (36.6%), Moderate (49.4%), and All High (14.0%) classes were identified. Compared to the All Low class, patients in the other two classes were significantly younger and were more likely to report depression and back pain. Compared to the other two classes, patients in the All High class had fewer years of education and a higher number of comorbidities. Significant differences were found among the three classes for comorbidity burden and total number of MSAS symptoms (i.e., All Low < Moderate < All High), as well as for performance status (i.e., All Low > Moderate > All High). A higher symptom burden was associated with poorer QOL outcomes. CONCLUSIONS: The first study to identify subgroups of patients with GI cancers based on distinct symptom profiles. LCA allowed for the identification of risk factors associated with a higher symptom burden. Clinicians can use this information to identify high-risk patients and develop personalized symptom management interventions.

Inpatient Unit Leaders' Perspectives on Parent Engagement in Neonatal and Pediatric Intensive Care: A Secondary, Qualitative Analysis.

BACKGROUND: Hospital unit leaders help set the unit's priorities and are responsible for guiding the unit mission and philosophy of care; however, the perspective of leaders in facilitating parent engagement within intensive care units is limited. PURPOSE: The purpose of this study was to explore how medical and nursing unit leaders facilitate parent engagement in intensive care settings. METHODS: Qualitative secondary analysis of 16 semistructured interviews of unit leadership (medical directors and nurse managers). Directed content analysis explored themes within the interviews using systematic strategies to ensure rigor. FINDINGS: Unit leadership described 3 main features of care delivery necessary for supporting parent engagement: (1) culture of care, (2) relationships in care, and (3) environment of care. Communication among providers and parents and timing of decision-making were key areas addressed, along with concerns about physical space limiting parent engagement. Unit leaders discussed how the 3 main features (unit culture, relationships, and physical space) of care delivery were interconnected to optimize parent engagement. IMPLICATIONS FOR PRACTICE: Overall, unit leaders recognized the importance of each feature of care delivery in facilitating engagement. Parent engagement is ultimately influenced by the optimization of delivering inclusive care: the physical space, the policies surrounding medical and nursing care, and the overall culture of the unit. IMPLICATIONS FOR RESEARCH: Future research needs to explore best practices around relationship building and managing space limitations. Further clarification of the needs and expectations of both parents and providers surrounding parent engagement in intensive care settings is needed.

Multiple Roles of Parental Caregivers of Children with Complex Life-Threatening Conditions: A Qualitative Descriptive Analysis.

PURPOSE: Children born with Complex Life-Threatening Conditions (CLTCs) often require complex and specialized services. Parents of children with CLTCs balance the role of caregiver with other responsibilities of employment, education, relationships, and self-care. The purpose of this paper is to describe the challenges for parents serving as caregivers of children with CLTCs and their intersection with health care provider expectations through utilization and adaptation of the role theory framework. DESIGN/METHODS: We employed a qualitative descriptive design, secondary analysis of a longitudinal study on parent and provider decision making for children with CLTC. There were 218 interviews from sixty-one parents of 35 infants with prematurity, bone marrow transplant, and/or complex cardiac disease, followed for one year unless death occurred. Content analysis and thematic generation were performed capturing the various parental roles embedded within provider expectations of informal parental caregiving. RESULTS: Results showed that parents of children with CLTCs serve multidimensional roles, including that of informal nurse and care coordinator, while maintaining additional personal roles as parent and family provider. Parents experienced challenges as caregivers that were shaped by perceived expectations of health care providers as well as lack of support, often leading to role strain, conflict, overload, and sometimes exit. CONCLUSIONS: Parents of children with CLTCs experience both common and unique challenges inn balancing multiple roles as an informal caregiver. Despite utilizing positive coping mechanisms, their status as parent caregiver carries significant risk for role strain and overload. We recommend the implementation of strategies for increasing parental support and family-centered care.

Human Flourishing in Adolescents with Cancer: Experiences of Pediatric Oncology Health Care Professionals.

PURPOSE: This study explores human flourishing (HF) in adolescents with cancer (AC) as witnessed by their health care providers, and it develops a list of critical attributes associated with HF to describe the positive outcomes witnessed. DESIGN AND METHODS: Our study used a qualitative descriptive design incorporating data from an open-ended electronic survey and semi-structured individual interviews with 17 pediatric oncology health care providers. RESULTS: We found 3 major themes (positive forward motion, connectedness, and self-character) representing 11 critical attributes of human flourishing in AC: (1) initiative and enterprise, (2) positivity and evocativeness, (3) tranquility and maturity, (4) perseverance and tenacity, (5) compassion and empathy, (6) social engagement and connection, (7) wisdom and translation into life, (8) supportive background, (9) self-awareness and self-agency, (10) transcendence and full potential, and (11) meaning-making. CONCLUSIONS: Understanding the concept of HF as it applies to the needs of AC is a step toward establishing it as a comprehensive health care goal and toward developing care provider guidelines for its promotion. PRACTICE IMPLICATIONS: Given the attributes of HF in AC, nurses can consider HF as an ultimate nursing care outcome and should focus on goals of care beyond disease treatment and symptoms mitigation when providing care for this population. Holistic, individualized assessment, timely care during each phase of treatment, and developmentally tailored intervention should be provided.

Identifying Individuals With Intellectual Disability Within a Population Study.

BACKGROUND: Much remains unknown about the longitudinal health and well-being of individuals with intellectual disability (ID); thus, new methods to identify those with ID within nationally representative population studies are critical for harnessing these data sets to generate new knowledge. OBJECTIVE: Our objective was to describe the development of a new method for identifying individuals with ID within large, population-level studies not targeted on ID. METHODS: We used a secondary analysis of the de-identified, restricted-use National Longitudinal Study of Adolescent to Adult Health (Add Health) database representing 20,745 adolescents to develop a method for identifying individuals who meet the criteria of ID. The three criteria of ID (intellectual functioning, adaptive functioning, and disability originating during the developmental period) were derived from the definitions of ID used by the American Psychiatric Association and the American Association on Intellectual and Developmental Disabilities. The ID Indicator was developed from the variables indicative of intellectual and adaptive functioning limitations included in the Add Health database from Waves I to III. RESULTS: This method identified 441 adolescents who met criteria of ID and had sampling weights. At Wave I, the mean age of this subsample of adolescents with ID was 16.1 years. About half of the adolescents were male and from minority racial groups. Their parents were predominately female, were married, had less than a high school education, and had a median age of 41.62 years. The adolescents' mean maximum abridged Peabody Picture Vocabulary Test standardized score was 69.6, and all demonstrated at least one adaptive functioning limitation. DISCUSSION: This study demonstrates the development of a data-driven method to identify individuals with ID using commonly available data elements in nationally representative population data sets. By utilizing this method, researchers can leverage existing rich data sets holding potential for answering research questions, guiding policy, and informing interventions to improve the health of the ID population.

Mobile Health Technology for Pediatric Symptom Monitoring: A Feasibility Study.

BACKGROUND: Pediatric blood and marrow transplant (PBMT) patients experience significant symptom distress. Mobile health (mHealth) technologies can be leveraged to improve understanding of the patient's symptom experience by providing continuous, real-time, in situ, patient-generated symptom data. This rich data stream can subsequently enhance symptom management strategies. However, limited research has been conducted in this area. OBJECTIVES: This pilot study seeks to (a) explore the feasibility of integrating mHealth technologies to monitor symptom data for PBMT patients and (b) evaluate the study design, measures, and procedures. METHODS: An exploratory longitudinal design was employed to assess the feasibility of monitoring 10 PBMT patients' symptoms using data from two mHealth technologies: (a) a smartphone mHealth application (app) to collect symptom data and (b) a wearable tracking device (Apple watch) to collect physiological data. Feasibility was measured as usability and acceptability. Monthly patient interviews and an end-of-study feasibility survey were employed and analyzed to further understand reasons for sustained interest in and attrition from the study. RESULTS: Overall usability of the wearable was 51%, and app was 56%. Children reported devices were easy to use and acceptable. The study demonstrated acceptability with an enrollment rate of 83% and an attrition rate of 30%, with 70% of the children remaining in the study for at least 40 days. DISCUSSION: This pilot study is among the first to explore the feasibility of using mobile technologies to longitudinally obtain patient-generated symptom data to enhance understanding of the PBMT symptom experience. In addition, it will improve our understanding of how these data present, interact, and cluster together throughout the posttransplant period.

Adaptive Leadership in Parents Caring for their Children Born with Life-Threatening Conditions.

PURPOSE: The purpose of this study was to chronicle the adaptive challenges and adaptive work, including emerging leadership behaviors, recounted over time by the parents of very young children diagnosed before birth with life threatening conditions. DESIGN AND METHODS: A descriptive, follow-up study design was used for the current study. Following the original grounded dimensional analysis study completed in 2012, the corpus for this analysis was collected in 2014. In-depth, audio-recorded interviews were conducted with 15 families (8 couples, 7 mothers). The 15 children, born with cardiac, abdominal, and cerebrospinal anomalies, were 14 - 37 months or deceased at follow-up. A directed content analysis of transcribed verbatim interviews was structured by the Adaptive Leadership framework. RESULTS: Parents described behaviors that indicated a non-linear development towards adaptive leadership as they accomplished the adaptive work within intra- and interpersonal domains that was necessary to address challenges over time. Not all parents described abilities and/or a willingness to mobilize others to do adaptive work, suggesting that adaptive leadership remained an unrealized potential. CONCLUSIONS: Understood as a complex adaptive system, parents of medically at-risk children hold potential for development towards adaptive leadership and collaborative partnership within the family and with healthcare providers. PRACTICE IMPLICATIONS: Due to improved survival rates, parents face ongoing challenges related to their children's unpredictable and often chronic health needs. Study findings illustrate parents' adaptive work and leadership behaviors, which can inform nursing assessments, as well as the type and timing for intervention.

Transition to adult care in sickle cell disease: A longitudinal study of clinical characteristics and disease severity.

BACKGROUND: Sickle cell disease (SCD) is a chronic blood disorder in which mortality has increased for adolescents and young adults (AYA). PROCEDURE: A longitudinal analysis of medical records was conducted to describe the clinical course among AYAs (ages 12-27 years) during transition to adult care. Measures included sociodemographic, complications, SCD severity (modified pediatric SCD severity index), comorbidities, and transfer. Group-based trajectory modeling (GBTM) to identify subgroups with distinct severity trajectories and chi-square and unpaired Student t test to explore subgroup differences were used. RESULTS: Overall, 339 AYAs (97% black, 56% male, 69% hemoglobin SS) had 10 848 clinic, 3840 hospital, and 3152 emergency department visits. Complications included vaso-occlusive crises (80%) and acute chest syndrome (41%). Comorbidities included depression (19%) and anxiety (14%). Most AYAs transferred to adult care (n = 220) at 19 years. Fourteen AYAs died, 10 within seven years from transfer. GBTM identified both stable and increasing severity trajectory groups: stable-low (n = 31, 23%), stable-medium (n = 61, 46%), stable-high (n = 6, 4.5%), low-increasing (n = 13, 10%), and medium-increasing (n = 22, 17%). AYAs with increasing severity (25%) were older, lived closer to the clinic, and had higher risk for SCD complications and comorbidities. They had fewer pediatric clinic visits; however, they were more likely to transfer and remain longer in adult SCD care. CONCLUSIONS: Whereas most AYAs had stable severity, nearly a quarter had increasing severity, over time. AYAs with increasing severity had more complications, were more likely to transfer to adult care, and demonstrated higher and longer adult SCD care utilization compared with AYAs with stable severity.