Barriers to Mental Health Care Transition for Youth and Young Adults with Intellectual and Developmental Disabilities and Co-occurring Mental Health Conditions: Stakeholders' Perspectives.

Youth and young adults (YYA) with intellectual and developmental disabilities (IDD) have high rates of co-occurring mental health (MH) conditions. The time during transition from pediatric to adult health and mental health care can be a very challenging, with risk of loss of services leading to poor outcomes. This study aimed to explore barriers to transition from pediatric to adult health and mental health care and services for individuals with IDD and co-occurring MH conditions, by eliciting the view of stakeholders, including disability advocates. Qualitative analysis was conducted using grounded theory, and themes were coded based upon the social-ecological model (SEM). We generated themes into multiple levels: the individual level, the family level, the provider level, the systems of care level, and the societal level. Stakeholders expressed a critical need to improve coordination between systems, and to increase provider availability to care for YYA with IDD and co-occurring MH conditions.

Educator Perspectives on Grief-Sensitive Training During the COVID-19 Pandemic in US Public Schools.

BACKGROUND: Grief and loss are common experiences for children and adolescents, particularly during the COVID-19 pandemic. Educators feel unprepared to support grieving students due to lack of training. We studied educator experiences receiving grief-sensitive training as part of the grief-sensitive schools initiative (GSSI), which provides grief-sensitive training, online video-based and print resources, and a financial grant to schools and school districts for use in supporting grieving students. METHODS: Fourteen New York and Florida educators who received GSSI training participated in small focus groups or semi-structured interviews on their experiences receiving GSSI training and supporting grieving students during the pandemic. Transcripts were analyzed using grounded-theory analysis. RESULTS: Emergent themes included increased confidence engaging grieving students, the desire for recurring trainings, the value of receiving training from an expert on pediatric grief and loss and the opportunity to ask questions, the need for grief-sensitive training to reflect the cultural diversity of school communities, the unique losses experienced by students during the pandemic, and compassion fatigue and burnout in educators. IMPLICATIONS FOR SCHOOL HEALTH POLICY, PRACTICE, AND EQUITY: Policymakers should recognize the effects of grief on students' learning and development and collaborate with educators to develop resources. CONCLUSIONS: Educators found GSSI training useful in supporting grieving students, particularly during the pandemic.

Health Care Transition: The Struggle to Define Itself.

Health care transition is an expanding field of health care practice and research focused on facilitating adolescents and emerging adults with long-term conditions to transfer uninterruptedly from pediatric to adult health care services and to transition successfully into adulthood and beyond. There is a widespread need to develop and implement service models as approximately one million adolescents and emerging adults with long-term conditions transfer their care into the adult system and enter adulthood. The purpose of this article is to explore major issues associated with the current state of health care transition practice, research and ultimately policymaking and systems change. The prominent issues addressed in this article include the following. Defining clearly what constitutes models of health care transition practice as ambiguity exists with terminology used with concepts integral to health care transition. The indistinct meanings of health care transition terminology commonly used, such as transition, transfer, readiness, and preparation, need to be operationalized for widespread application. Furthermore, questions remain as to what goal-directed outcomes are expected within this field of practice and science.

Risk factors for unanticipated hospitalizations in children and youth with spina bifida at an urban children's hospital: A cross-sectional study.

BACKGROUND: Spina bifida (SB) is a condition resulting from the improper closure of the neural tube and vertebral column during fetal development. While patients' life expectancy and quality of life have improved dramatically due to medical advances, children continue to experience health-related issues that often require hospitalizations. OBJECTIVE: The association among sociodemographic and clinical characteristics with potentially preventable hospitalizations (PPH) in children and youth with myelomeningocele type SB was investigated in this cross-sectional study. METHODS: Chart reviews and data extraction were conducted on 108 children and youth, ages 1 month to 21 years, admitted for PPH in a regional children's academic medical center between May 2017 and July 2019. Sociodemographic variables included sex, age, type of insurance and ethnicity. Clinical variables included level of lesion, ambulation status, shunt dependency and selected diagnostic categories. Univariate, bivariate, and multivariate analyses were conducted to identify factors associated with PPH. RESULTS: Factors associated with PPH included being male, ages 5-18 years, low lumbar level lesions, non-ambulatory, with public insurance, Hispanic and shunt dependent. Most hospitalizations (73%) were for neurologic or urologic conditions. Factors independently associated with PPH were ethnicity for urologic conditions, being ambulatory for metabolic conditions, and age for gastroenterology conditions. CONCLUSION: Selected demographic and clinical variables were found to be associated with PPH of children and youth with myelomeningocele-type SB. The most common reasons for PPH were shunt malfunctions and urinary tract infections, consistent with other studies.

Exploratory study of the provision of academic and health-related accommodations to transition-age adolescents and emerging adults with spina bifida.

PURPOSE: The purpose of this exploratory study was to investigate the types of academic and health-related accommodations provided to adolescents and emerging adults with spina bifida aged 9-20 years. METHODS: Data were extracted from the paper and electronic records of transition-age youth enrolled in the study. Four open ended items involved content analysis. RESULTS: The most frequently identified accommodation was enrollment in special education classes in 47.7% of the charts. Other academic accommodations that were most often reported were adaptive physical education (n = 71, 39.9%), tutoring (n = 28; 15.7%), and home schooling (n = 21; 11.8%). Clean intermittent catheterization was the most frequently identified health-related accommodation provided by the school nurse/aide (n = 57; 32%).The largest percentage of requests for additional accommodations were made during the middle school grades (15; 54.8%) followed by high school (10; 32.2%). CONCLUSION: Findings demonstrated that persistent issues were identified by parents/adolescents regarding the provision of school-related accommodations. This is a relevant area for clinical practice to ensure students with special health care needs and those with spina bifida receive the academic and health-related accommodations in their Individualized Education Program/504 plans.

Health Care Transition Planning: Educational Needs of Pediatric Nurses and Pediatric Nurse Practitioners.

INTRODUCTION: The purpose was to identify the educational needs of pediatric nurses and pediatric nurse practitioners providing direct care to transition-aged youth with chronic illness and disability and to identify strategies to develop health care transition planning (HCTP) expertise. METHOD: Mixed-methods descriptive analyses were performed on survey data extracted from a larger national study exploring the provision of HCTP activities performed by nurses of two pediatric nursing professional organizations. RESULTS: Items querying educational needs were completed by 1,162 pediatric nurses serving in advanced practice and staff roles. Twenty percent reported having specialized HCTP education. Of which more than half received it outside of the workplace. Factor analysis revealed two constructs explaining 73.4% of the variance in nurses' reported level of knowledge. DISCUSSION: HCTP education and the development of nurse-led services to facilitate optimal health care transitions outcomes are necessitated. Academia and service have a shared responsibility in educating nurses.

Factors Affecting Compliance with Diabetic Retinopathy Screening: A Qualitative Study Comparing English and Spanish Speakers.

Purpose: The purpose of this study was to understand individual-, social-, and system-level factors that affect compliance with recommended diabetic retinopathy (DR)-evaluations, and how these factors vary between English and Spanish speakers. Patients and Methods: We conducted a qualitative study using semi-structured interviews. Study subjects included Kaiser Permanente Southern California members with type II diabetes mellitus at least aged 26 years who spoke English or Spanish. Patients were divided into groups based on their adherence with DR evaluations. Our main outcome measure was the major themes expressed by patients that explained their compliance with DR evaluation. Results: Fifty-one participants were enrolled: 30 English speakers (11 nonadherent, 19 adherent) and 21 Spanish speakers (8 nonadherent, 13 adherent). Adherent patients were more likely to have had experience with diabetes and identify as being responsible for their own care. Substantially more non-adherent patients suggested that beliefs and attitudes were the reasons people missed retinopathy appointments. More English-speaking participants tended to be self-directed in managing their healthcare, whereas more Spanish speakers relied on others for help. English speakers also noted better relationships with their physicians. Spanish speakers outlined problems with insurance coverage and costs as barriers. Conclusion: These data suggest two specific intervention strategies that eye care providers could implement to improve adherence with diabetic retinopathy screening and follow up: incorporating a person with DR-related visual loss into the team of staff delivering diabetes support programs and communication campaigns including specific messaging to address fears related to vision loss.

Self-management for youth and young adults with special health needs: protocol for a scoping review of health care transition planning literature.

OBJECTIVE: The purpose of this scoping review is to explore the extent to which self-management of youth and young adults with special health care needs is reported in the health care transition literature. INTRODUCTION: It is essential for youth and young adults with special health care needs to learn the self-management skills, to the extent possible, that are essential in maintaining the stability of their chronic condition to seamlessly transfer to adult care and live independently. Acquisition of self-management competencies for chronic care management is an essential component of health care transition preparation. INCLUSION CRITERIA: The inclusion criteria will be based upon age and condition designation. The age range of participants will include youth and young adults, aged nine to 35 years, who have special health care needs. Inclusion criteria consists of both non-categorical and diagnostic specific terminology for youth and young adults with a childhood acquired chronic condition. Non-categorical terms used include "long-term chronic condition," "special health care needs," "medical complex condition," "complex care needs," "developmental disability," "intellectual disability," "mental health condition," "emotional disabilities," "physical disabilities," "chronic illness," and "chronic condition." METHODS: The following databases will be accessed for this health care transition scoping review: CINAHL, Cochrane CENTRAL, Embase, Ovid MEDLINE, PsycINFO, and Web of Science. Relevant gray literature will be accessed as well. The Covidence software platform will be used to review citations and full-text articles. Two reviewers will independently review abstracts and full texts of studies, and extract data using the data extraction tool. Any conflicts will be resolved with a third reviewer. Review findings will be presented in tabular format and narrative synthesis based upon the scoping review objective.

Racial/ethnic minority children recently placed in the child welfare system: the impact of sociodemographic, medical and mental health factors on overweight /obesity.

Children in the child welfare system have greater rates of obesity and are more prone to overweight/obesity as adults compared to other children. There is limited research on how ecological, biological and developmental factors impact the trajectory of overweight/obesity in this group. This retrospective study examined these factors among children entering the child welfare system. Overweight/obesity was highest among children 12-18 years. Children with diagnoses indicative of poor nutrition, and limiting exercise, were more likely to be overweight/obese. Ecological risks often were not disclosed. Barriers to obtaining information to address overweight/obesity reflect challenges to addressing chronic disease more broadly.

An exploratory study of adolescents and emerging adults with spina bifida knowledge of their individual education program: Implications for health care transition planning.

PURPOSE: The purpose of this study was to explore adolescents and emerging adults (AEA) with spina bifida (SB) understanding of their Individualized Education Program (IEP) and to identify factors related to their knowledge about their own IEP. METHODS: Data were collected from January 2015 to July 2016 from 79 adolescents with SB. A ten-item questionnaire including demographics and questions specifically addressing IEPs was used. Qualitative analysis followed an iterative, emergent approach. Two experienced coders independently read and coded each of the three open-ended questions. It was determined that the responses of all three questions could feasibly be merged as the analysis of responses were similar. FINDINGS: This was a predominately 70 (88.7%) Hispanic sample of AEA with SB who ranged in age from 12 to 20 years (M= 15.3 years) consisting of 41 males and 38 females. All reported they have/had an IEP. Four major themes and eleven subthemes emerged from the analysis. Major themes were: The Barometer of How I Am Doing, Creating the Right Match for Learning, Obtaining the Assistance I Need, and Future Goals and Planning. CONCLUSIONS: Findings of this study reveal the IEP knowledge gaps and lack of lifestyle self-management skills AEA with SB reported pertaining to IEPs.

Safely surrendered infants in Los Angeles County: A medically vulnerable population.

BACKGROUND: As a means to provide safety for a population at great risk of harm through abandonment, every state in the United States now has laws and practices for the safe relinquishment of newborns and infants. However, there is no national database tracking the population of infants surrendered through such programmes, and few states monitor these numbers. The primary aim of this study was therefore to examine the descriptive characteristics of infants who have been safely surrendered in a large, socio-economically diverse urban area. The secondary aim was to compare them with local population norms to determine whether differences exist and to begin exploring what implications such differences may have for the treatment provided to these infants. METHODS: A retrospective cross-sectional study was conducted among safely surrendered infants. RESULTS: Over half of the infants had medical issues, and the majority of the infants were surrendered in communities characterized by low median income. CONCLUSIONS: Preliminary information highlights potential economic, social, and medical risk factors, suggesting that these infants may require increased monitoring and/or specialized care.

Satisfaction, Salaries, and Sustainability: Results of a National Survey of Pediatric Program Directors.

OBJECTIVE: Describe the career and work environment of pediatric program directors (PDs) and associated factors, including salary disparities and long-term career plans. METHODS: A national, anonymous, electronic survey was sent to all categorical residency PD members of the Association of Pediatric Program Directors. Surveys assessed PD demographics, characteristics of the residency program and PD positions (including salary), and measures of satisfaction. Chi-square and Fisher's exact tests were used to analyze results. RESULTS: A total of 149 PDs (74%) responded. Significantly more men earned $250,000 or more annually (26.9% vs 6.1% of women), and gender remained a significant independent predictor of salary after controlling for age, academic rank, and subspecialty. Satisfaction was high for most measures, although 20% or more reported low satisfaction with pay (38.9%), administrative workload (32.1%), managing accreditation and expectations of the Accreditation Council for Graduate Medical Education (31.9%), resources (27.9%), work/life balance (24.1%), and being valued by administration (20.0%). Only 34.3% saw the PD position as an end goal, and 29.5% stated they would be in their current position in 5 years. Satisfaction with the PD career, with faculty relationships, with resident performance, and with administrative workload was associated with plans to remain. CONCLUSIONS: Most pediatric program directors did not view the position of PD as their long-term career goal, and many identified administrative duties and work/life balance as contributing to significant dissatisfaction. Without changes to address these issues, PD turnover may be high, with potential negative implications for the success of training programs.

Understanding Facilitators and Barriers to Care Transitions: Insights from Project ACHIEVE Site Visits.

BACKGROUND: Care transitions between clinicians or settings are often fragmented and marked by adverse events. To increase patient safety and deliver more efficient and effective health care, new ways to optimize these transitions need to be identified. A study was conducted to delineate facilitators and barriers to implementation of transitional care services at health systems that may have been adopted or adapted from published evidence-based models. METHODS: From March 2015 through December 2015, site visits were conducted across the United States at 22 health care organizations-community hospitals, academic medical centers, integrated health systems, and broader community partnerships. At each site, direct observation and document review were conducted, as were semistructured interviews with a total of 810 participants (5 to 57 participants per site) representing various stakeholder groups, including management and leadership, transitional care team members, internal stakeholders, community partners, patients, and family caregivers. RESULTS: Facilitators of effective care transitions included collaborating within and beyond the organization, tailoring care to patients and caregivers, and generating buy-in among staff. Commonly reported barriers included poor integration of transitional care services, unmet patient or caregiver needs, underutilized services, and lack of physician buy-in. CONCLUSION: True community partnership, high-quality communication, patient and family engagement, and ongoing evaluation and adaptation of transitional care strategies are ultimately needed to facilitate effective care transitions. Health care organizations can strategically prioritize transitional care service delivery through staffing decisions, by making transitional care part of the organization's formal board agenda, and by incentivizing excellence in providing transitional care services.

Hysterectomy for benign conditions: Complications relative to surgical approach and other variables that lead to post-operative readmission within 90 days of surgery.

OBJECTIVE: To examine variables associated with hysterectomy-related complications, relative to surgical approach and other variables, that lead to readmission within 90 days of surgery. METHODS: We conducted an observational cohort study for which data were extracted from electronic health records. Data were extracted of all patients (n = 3106) who underwent hysterectomies at 10 Kaiser Permanente Southern California medical centers between June 2010 and September 2011. Patients who were pregnant or had a cancer diagnosis were excluded from the study. To identify univariate associations between examined variables and procedure type, chi-square tests for categorical variables and t-tests or analysis of variance for continuous variables were used. Generalized estimating equations methods were used to test associations between independent variables and primary outcomes of interest. Statistical significance was determined using a p-value <.05. RESULTS: Of 3106 patients, 109 experienced 168 post-operative complications. The most common post-operative complications were related to pelvic abscesses, bowel obstruction, or severe ileus, and the vaginal cuff. Pelvic abscesses were most frequent among total laparoscopic hysterectomy and total abdominal hysterectomy cases (p = .002), and vaginal cuff complications were most frequent among total laparoscopic hysterectomy cases (p = .015). Patients who underwent total vaginal hysterectomy (odds ratio = 2.13, confidence interval = 1.15-3.92), laparoscopic supracervical hysterectomy (odds ratio = 3.11, confidence interval = 1.13-8.57), and total laparoscopic hysterectomy (odds ratio = 5.60, confidence interval = 2.90-10.79) experienced increased occurrence of post-operative complications resulting in readmission. Other variables associated with an increased risk for readmission included high estimated blood loss (201-300 mL and 301+ mL, relative to 0-50 mL; odds ratio = 2.28, confidence interval = 1.24-4.18 and odds ratio = 2.63, confidence interval = 1.67-4.14) and long length of stay of 3 days or more (relative to 0 days; odds ratio = 2.93, confidence interval = 1.28-6.69). Pelvic specimen weight in the 151-300 g and 501+ g ranges appeared protective (odds ratio = 0.40, confidence interval = 0.25-0.64 and odds ratio = 0.54, confidence interval = 0.33-0.90). In a sub-analysis of 1294 patients, 74 hospital operative complications directly related to hysterectomy were identified among 59 patients. The most common hospital operative complications were excessive bleeding associated with surgery or injury to nearby structures. Among the sub-sample of 1294 patients, those with hospital operative complications were more likely to experience post-operative complications that lead to readmission (odds ratio = 3.82, confidence interval = 1.55-9.43, p = .004). CONCLUSION: The observed increased risk of complications among patients of Black race, who underwent laparoscopic supracervical hysterectomy or total laparoscopic hysterectomy, who experienced more than 300 mL surgical blood loss, who suffered hospital operative complications, and those whose hospitalization was 3 days or greater, offers an opportunity for higher scrutiny and preventive measures during usual hysterectomy care to prevent later readmission.

Human papillomavirus vaccine series completion: Qualitative information from providers within an integrated healthcare organization.

OBJECTIVE: This qualitative study aimed to identify doctors' and nurses' perceptions of patient-, provider-, and system-level factors associated with human papillomavirus (HPV) vaccine completion that may be targets for intervention. METHODS: We analyzed data from 61 qualitative interviews with pediatricians, family medicine physicians, and immunization nurses at medical centers that had the highest and lowest HPV vaccine completion rates within the same health care system. RESULTS: In both groups, almost all providers reported strong support for the HPV vaccine. In detailing how they talk to parents and patients about the vaccine, more of the providers working at higher completion centers described using effective communication techniques, including engaging parents and patients in two-way conversation and demonstrating awareness of cultural and practical barriers to completion that families may face. Providers at higher completion centers were also more likely to depict a local medical culture supportive of and committed to HPV vaccine completion, with greater levels of proactivity and teamwork. In contrast, providers working at lower completion medical centers described a lack of proactivity, and the strategies they suggested to improve HPV vaccine completion tended to be approaches that someone other than medical providers would implement. The comments made by these providers sometimes reflected a level of negativity and judgment absent from the comments of providers at higher completion centers. CONCLUSION: Interventions to improve HPV vaccination completion rates should address both individual- and system-level factors. Improving communication skills, encouraging a supportive medical culture, and addressing resource issues is likely to improve vaccine adherence.

Centralized Reading Center Improves Quality in a Real-World Setting.

BACKGROUND AND OBJECTIVE: Diabetic retinopathy (DR) screening is standard of care, but its utility diminishes unless high quality is maintained. This project describes the improvement in diagnostic accuracy achieved at a large health maintenance organization by implementing a centralized reading center. PATIENTS AND METHODS: Data were extracted from the electronic health records of patients with diabetes who underwent DR screening between January 1, 2009, and December 31, 2013, at 13 medical centers. Certified ophthalmic assistants and technicians were trained to read DR images under the supervision of a retinal specialist. This program was pilot-tested prior to full implementation. RESULTS: DR prevalence among the 13 centers in 2009 was 10.1%, far below the national average. After implementation, prevalence increased to 22.1%. The program also resulted in improved access to follow-up. CONCLUSION: The results demonstrate the value of a reading center in decreasing diagnostic error and achieving other improvements in a real-world setting.

Internalised homophobia is differentially associated with sexual risk behaviour by race/ethnicity and HIV serostatus among substance-using men who have sex with men in the United States.

OBJECTIVES: There is a continuing need to identify factors associated with risk for HIV transmission among men who have sex with men (MSM), including a need for further research in the ongoing scientific debate about the association of internalised homophobia and sexual risk due partly to the lack of specificity in analysis. We assess the association of internalised homophobia by race/ethnicity within HIV serostatus for a large sample of substance-using MSM at high risk of HIV acquisition or transmission. METHODS: Convenience sample of substance-using (non-injection) MSM reporting unprotected anal sex in the prior 6 months residing in Chicago, Los Angeles, New York and San Francisco. The analytic sample included HIV-negative and HIV-positive black (n=391), Latino (n=220), and white (n=458) MSM. Internalised homophobia was assessed using a published four-item scale focusing on negative self-perceptions and feelings of their own sexual behaviour with men, or for being gay or bisexual. Analyses tested associations of internalised homophobia with recent risk behaviour, stratified by laboratory-confirmed HIV serostatus within race/ethnicity, and controlling for other demographic variables. RESULTS: In multivariate analysis, internalised homophobia was inversely associated (p<0.05) with recent unprotected anal sex among black MSM, and not significantly associated with sexual risk behaviour among white and Latino MSM. CONCLUSIONS: More research is needed to further identify nuanced differences in subpopulations of MSM, but these results suggest differentially targeted intervention messages for MSM by race/ethnicity.

Peer-education intervention to reduce injection risk behaviors benefits high-risk young injection drug users: a latent transition analysis of the CIDUS 3/DUIT study.

We analyzed data from a large randomized HIV/HCV prevention intervention trial with young injection drug users (IDUs) conducted in five U.S. cities. The trial compared a peer education intervention (PEI) with a time-matched, attention control group. Applying categorical latent variable analysis (mixture modeling) to baseline injection risk behavior data, we identified four distinct classes of injection-related HIV/HCV risk: low risk, non-syringe equipment-sharing, moderate-risk syringe-sharing, and high-risk syringe-sharing. The trial participation rate did not vary across classes. We conducted a latent transition analysis using trial baseline and 6-month follow-up data, to test the effect of the intervention on transitions to the low-risk class at follow-up. Adjusting for gender, age, and race/ethnicity, a significant intervention effect was found only for the high-risk class. Young IDU who exhibited high-risk behavior at baseline were 90% more likely to be in the low-risk class at follow-up after the PEI intervention, compared to the control group.