The pervasive influence of systems of power on transition readiness for adult care in sickle cell disease: A qualitative study.

BACKGROUND: Adolescence and young adulthood are vulnerable developmental periods for individuals with sickle cell disease (SCD), particularly given the impact of social inequities, challenges with transitioning to adult healthcare services, and increased risk for morbidity and mortality. Systems of power, such as institutionalized and interpersonal manifestations of bias, could impact SCD transfer and engagement in adult care through their influence on healthcare transition readiness; yet research in this area is limited. OBJECTIVE: To characterize how systems of power impact transition readiness factors described in the Social-ecological Model of AYA Readiness for Transition to Promote Health Equity (SMART-E) framework at the patient, caregiver, and practitioner levels. METHODS: Pediatric adolescents and young adults (AYA), transferred AYA, caregivers, and practitioners participated in semi-structured focus groups and individual interviews examining health equity and systems of power during healthcare transition. Focus groups/interviews were transcribed and coded using a deductive approach via the updated SMART-E framework. RESULTS: Ten pediatric AYA with SCD, nine transferred AYA with SCD, eight caregivers, and nine practitioners participated in a focus group or interview. Qualitative findings across reporters emphasize the impact of systems of power (e.g., racial bias and disease stigma) on knowledge, skills and self-efficacy, beliefs and expectations, goals and motivation, and emotions and psychosocial functioning at the patient, caregiver, and practitioner levels. CONCLUSION: Systems of power are prevalent with respect to transition barriers for AYA with SCD and their supports. Structural, institutional, and individual factors with potential to reduce the influence of systems of power should be further identified and targeted for intervention.

Feasibility of a clinic-based, multicomponent hydroxyurea adherence intervention for adolescents and young adults with sickle cell disease.

Despite the effectiveness of hydroxyurea, adherence remains low for adolescents and young adults (AYA) living with sickle cell disease (SCD). This study evaluated the feasibility, acceptability, and initial efficacy of a clinic-based, multicomponent (e.g., storytelling, problem solving) intervention with 20 AYA living with SCD. Results found that adherence significantly improved from intervention to follow-up 1 [t(19) = -2.213, p = .039]. AYA also were generally satisfied with the intervention. These findings, although promising, should be replicated on a larger scale.

Attitudes, Beliefs, and Intention to Receive a COVID-19 Vaccine for Pediatric Patients With Sickle Cell Disease.

Sickle cell disease (SCD), which occurs primarily in individuals of African descent, has been identified as a preexisting health condition for COVID-19 with higher rates of hospitalization, intensive care unit admissions, and death. National data indicate Black individuals have higher rates of vaccine hesitancy and lower COVID-19 vaccination rates. Understanding the key predictors of intention to receive a COVID-19 vaccine is essential as intention is strongly associated with vaccination behavior. This multisite study examined attitudes, beliefs, intentions to receive COVID-19 vaccines, and educational preferences among adolescents, young adults, and caregivers of children living with SCD. Participants completed an online survey between July 2021 and March 2022. Multivariate logistic regression was used to examine the association between participant age and COVID-19 vaccine attitudes, beliefs, and vaccine intentions. Of the 200 participants, 65.1% of adolescents, 62.5% of young adults, and 48.4% of caregivers intended to receive a COVID-19 vaccine for themselves or their child. Perception that the vaccine was safe was statistically significant and associated with patient and caregiver intention to receive the COVID-19 vaccine for themselves or their child. Participant age was also statistically significant and associated with the intent to get a booster for patients. Study findings highlight key concerns and influencers identified by patients with SCD and their caregivers that are essential for framing COVID-19 vaccine education during clinical encounters. Study results can also inform the design of messaging campaigns for the broader pediatric SCD population and targeted interventions for SCD subpopulations (eg, adolescents, caregivers).

Disease-modifying therapies for sickle cell disease: Decisional needs and supports among adolescents and young adults.

BACKGROUND: Shared decision-making is one promising solution to addressing barriers in use of disease-modifying therapies for adolescents and young adults (AYAs) with sickle cell disease (SCD). A thorough understanding of decisional needs can guide the development of decisional supports and promote shared decision-making. PROCEDURE: Informed by the Ottawa Decision Support Framework (ODSF), we conducted a qualitative analysis to assess decisional needs and supports reported by AYAs with SCD, their caregivers, and healthcare providers. Semi-structured qualitative interviews were conducted with AYAs and their caregivers, and online crowdsourcing was used with SCD providers. Thematic and descriptive content analyses were used to summarize perspectives on decisional needs and supports regarding disease-modifying therapies. RESULTS: Fourteen AYAs (Mage  = 21 years, 57% male, 93% non-Hispanic Black, 79% HbSS), 11 caregivers (80% female, 100% non-Hispanic Black), and 40 healthcare providers (65% female, 65% non-Hispanic White, Myears in practice  = 14.8 years, 75% physicians) participated. Thematic analysis revealed needs related to: decisional conflict, inadequate knowledge, unclear expectations, and inadequate supports and resources. Six forms of support emerged as important for decision-making: establishing an open and trusting patient/family-provider relationship, providing information, accepting ambivalence and unreadiness, supporting implementation of a decision, addressing inadequate health and social services, and promoting adequate social, emotional, and instrumental help. CONCLUSIONS: This is the first study to assess decisional needs and supports for AYAs with SCD considering disease-modifying therapies. Additional research is needed to examine which decision supports are the most impactful to promote effective shared decision-making in this population.

Trajectory of Sleep, Depression, and Quality of Life in Pediatric HSCT Recipients.

Disrupted sleep is commonly reported during hematopoietic stem cell transplant. In this study, we use actigraphy to measure sleep parameters, and qualitative measures of quality of life, depression, and sleep in pediatric and young adult transplant recipients to describe their time course through transplant. Eight patients had evaluable actigraphy data, and 10 patients completed the surveys. The median age of the 6 male and 7 female participants was 13.94 years old. Sleep duration and efficiency measured by actigraphy were suboptimal prior to transplant, then declined to a nadir between Day +7 to +14. Self-reported sleep quality, depression, and quality of life were worst at Day +14 to +30 but improved by Day +100. Findings support efforts to improve sleep, which may improve recovery, mental health and quality of life.

Factors Associated With Racially and Ethnically Diverse Sample of Adolescents, Young Adults, and Parents' Intention to Receive a COVID-19 Vaccine.

PURPOSE: Identify variables, including moderating variables, associated with adolescents, young adults, and parents' intention to receive a COVID-19 vaccine in January 2021. DESIGN: Cross-sectional survey. SETTING: United States Midwestern academic medical center. SAMPLE: Adolescents (n = 242); young adults (n = 333); parents (n = 563). MEASURES: Associations between predictors-participant characteristics, general vaccine hesitancy, COVID-19 and vaccine knowledge, perceptions, and normative beliefs-and intention to receive a COVID-19 vaccine (outcome) were assessed. To determine variables impacting the strength of the relationship between predictors and outcome, moderators included 2020/2021 influenza vaccine receipt, having experienced discrimination, and primary sources of information for COVID-19. ANALYSIS: Multivariable logistic regression examined associations, including moderating effects, for adolescents, young adults, parents, and parents for child. RESULTS: With 20,231 email addresses receiving the survey, 1138 participants were included in the analysis. Intention to receive a COVID-19 vaccine was reported by 60.7% adolescents (n = 147), 65.2% young adults (n = 217), and 38.5% parents (n = 217) and 38.2% parents (n = 215) intended to vaccinate their child. Intention was associated with lower general vaccine hesitancy for adolescents (AOR = 1.50), young adults (AOR = 1.39), parents (AOR = 1.18), and parents' intention for their child (AOR = 1.17). Parents citing reputable medical experts as primary source of COVID-19 information positively moderated vaccine perceptions and intention for self (AOR = 8.25) and child (AOR = 6.37). CONCLUSION: Clinician training to address vaccine hesitancy may be effective at promoting positive COVID-19 vaccine perceptions.

An Updated Equitable Model of Readiness for Transition to Adult Care: Content Validation in Young People With Sickle Cell Disease.

Importance: Despite elevated health risks during young adulthood, many adolescents and young adults with serious health care needs face barriers during the transfer to an adult specialty practitioner, and health disparities may occur during the transition. Objective: To validate the content of an updated Social-Ecological Model of Adolescent and Young Adult Readiness for Transition to Promote Health Equity (SMART-E) in a group of adolescents and young adults with sickle cell disease (SCD) and their supports. Design, Setting, and Participants: Health equity framework components were reviewed. Systems of power (eg, institutional and practitioner bias) and environments or networks (eg, peer or school support) were added as SMART-E preexisting factors, and health literacy was included within readiness factors. Adolescents and young adults aged 16 to 29 years with SCD, caregivers, and practitioners participated in this convergent, mixed-methods study within Children's Hospital of Philadelphia between January and August 2022. Main Outcomes and Measures: Content validity was assessed through nominations of top 3 most important transition barriers prior to interviews and focus groups, ratings on importance of SMART-E factors (0-4 scale; ratings >2 support validity) after interviews and focus groups, nominations of 3 most important factors for transition and for health equity, and qualitative content analysis of interview transcripts. Results: The study enrolled 10 pediatric adolescents and young adults (mean [SD] age, 18.6 [2.9] years; 4 female and 6 male), 10 transferred adolescents and young adults (mean [SD] age, 22.9 [2.1] years; 8 female and 2 male), 9 caregivers (mean [SD] age, 49.8 [8.7] years; 5 female and 4 male), and 9 practitioners (mean [SD] age, 45.6 [10.5] years; 8 female and 1 male). Quantitative ratings supported the content validity of SMART-E and met established criteria for validity. Systems of power was the most endorsed transition barrier (14 of 38 participants) reported prior to interviews and focus groups. After the interview, participants endorsed all SMART-E factors as important for transition, with new factors systems of power and environments and networks rated at a mean (SD) 2.8 (1.23) and 3.1 (0.90), respectively, on a 0 to 4 scale of importance. The most important factors for transition and equity varied by participant group, with all factors being endorsed, supporting the comprehensiveness of SMART-E. Qualitative data corroborated quantitative findings, further supporting validity, and minor modifications were made to definitions. Conclusions and Relevance: SMART-E obtained initial content validation with inclusion of health equity factors for adolescents and young adults with SCD, caregivers, and practitioners. The model should be evaluated in other populations of adolescents and young adults with chronic disease.

Feasibility of Electronic Medication Monitoring Among Adolescents and Emerging Adults with Sickle Cell Disease.

Purpose: To examine the feasibility of using MEMS® bottles to assess adherence among adolescents and emerging adults with sickle cell disease. Patients and Methods: Eighteen non-Hispanic Black participants with HbSS (M = 17.8 years; 61% male) were given a MEMS® bottle to store hydroxyurea (n = 14) or deferasirox (n = 4). Results: One hundred percent initiated MEMS® use and 61% sustained use through the 18-week study; at follow-up, only 11% returned their bottle on time. Barriers to MEMS® use included medication changes and transition to adult care; facilitators included tip sheets and reminders. Conclusion: While MEMS® is acceptable to this population, ensuring sustained use and timely provision of bottles will require additional supports.

A feasibility randomized controlled trial of an mHealth app vs booklets for patient-facing guidelines in adults with SCD.

Despite the increased number of evidence-based guidelines for sickle cell disease (SCD), dissemination of evidence-based guidelines in lay language for individuals or families with SCD has not been evaluated. We conducted a feasibility randomized controlled trial to determine the acceptability of a mobile health (mHealth) app with patient-facing guidelines to improve the knowledge of individuals with SCD about SCD-specific knowledge and reduce hospitalizations. Primary outcome measures include recruitment, retention, and adherence rates. Adults with SCD were enrolled at 2 sickle cell centers between 2018 and 2022. Participants were randomized to receive either an mHealth app + booklet with patient-facing guidelines or a booklet with the guidelines alone. Participants completed surveys at baseline and a final 6-month visit. Approximately 67 of 74 (91%) agreed to participate and were randomized, with 50 of 67 (75%) completing all the study components. All participants who completed the study in the treatment arm used the app. Our results demonstrated high recruitment, retention, and adherence rate for the first randomized trial for an mHealth app with patient-facing guidelines in adults with SCD. This clinical trial was registered at https://www.clinicaltrials.gov/ as #NCT03629678.

Partnering with Families and Communities to Improve Child Health and Health Equity.

Pediatricians and other pediatric health providers collaborate with families and communities, including schools, health departments, and other partners to advance pediatric health challenges and health equity. This article will discuss best practices and guiding principles to support engagement and effective partnership with families and communities. Models for engaging families and communities while promoting health equity will also be discussed. Case studies and examples will be shared, as well as how they may be applied by pediatric health providers to promote child health.

The Effect of an Adapted Digital Mental Health Intervention for Sickle Cell Disease on Engagement: A Pilot Randomized Controlled Trial.

INTRODUCTION: Despite promising outcomes, lack of engagement and poor adherence are barriers to treating mental health using digital CBT, particularly in minority groups. After conducting guided focus groups, a current mental health app was adapted to be more inclusive for minorities living with SCD. METHODS: Patients between the ages of 16-35 with SCD who reported experiencing anxiety or depression symptoms were eligible for this study. Once enrolled, participants were randomly assigned to receive one of two versions of a mental health app 1) the current version designed for the general population and 2) the adapted version. Baseline measures for depression, anxiety, pain and self-efficacy were completed at the start of the study and again at postintervention (minimum 4 weeks). RESULTS: Compared to baseline, pain (p = 0.03), self-efficacy (p = 0.007) and depression symptoms (p = 0.016) improved for the group that received the adapted app. Regardless of group assignment, a positive relationship (r = 0.47) was shown between app engagement and a change in depression symptoms (p = 0.042). DISCUSSION: Target enrollment for this study sought to enroll 40 participants. However, after difficulties locating qualified participants, enrollment criteria were adjusted to expand the population pool. Regardless of these efforts, the sample size for this study was still smaller than anticipated (n = 21). Additionally, irrespective of group approximately 40% of participants did not engage with the app. However, despite a small sample size and poor engagement, participants in the intervention group displayed better outcomes and showed trends for greater app interaction. CONCLUSION: These promising results should encourage future researchers to continue exploring ideal adaptations for implementing digital CBT in minority populations. Future studies should also consider implementing post-intervention surveys to help identify common factors relating to a lack of engagement.

School Challenges and Services Related to Executive Functioning for Fully Included Middle Schoolers with Autism.

The educational services available for fully included middle schoolers with autism spectrum disorder (ASD) in the general education setting are not well known. Even less is known about how the executive functioning (EF) deficits of such youth are addressed in the classroom. The current study sought to identify the challenges, including EF, that middle schoolers with ASD face and the services that they receive on their Individualized Education Program (IEP), and also explore specific strategies used to build EF skills at school. A convenience data sample was obtained from focus groups with educational personnel (n = 15), and qualitative analyses of IEPs were conducted in middle schoolers with ASD with EF deficits (n = 23). Results confirmed that social communication and EF challenges are common. Multiple services and accommodations were identified, although EF challenges were rarely targeted on IEPs. Factors that may facilitate the success of EF strategies in the classroom are discussed.

Evaluation of a Community COVID-19 Vaccine Ambassador Train-the-Trainer Program.

Racially minoritized groups are more likely to experience COVID-19 vaccine hesitancy and have lower vaccination rates.  As part of a multi-phase community-engaged project, we developed a train-the-trainer program in response to a needs assessment. "Community vaccine ambassadors" were trained to address COVID-19 vaccine hesitancy. We evaluated the program's feasibility, acceptability, and impact on participant confidence for COVID-19 vaccination conversations. Of the 33 ambassadors trained, 78.8% completed the initial evaluation; nearly all reported gaining knowledge (96.8%) and reported a high confidence with discussing COVID-19 vaccines (93.5%). At two-week follow-up, all respondents reported having a COVID-19 vaccination conversation with someone in their social network, reaching an estimated 134 people. A program that trains community vaccine ambassadors to deliver accurate information about COVID-19 vaccines may be an effective strategy for addressing vaccine hesitancy in racially minoritized communities.

Virtual reality informs clinical observation tool.

BACKGROUND: Assessing trainees' skills via workplace-based assessments is challenging given the lack of psychometrically valid instruments. Our team previously developed an observation instrument to assess residents' competencies in behavioral health anticipatory guidance (BHAG) and motivational interviewing (MI) though its reliable usage required expert raters (e.g., paediatric psychologists). Our purpose was to establish validity evidence for a modified tool for clinicians. APPROACH: This study utilised data from a prior educational trial of a virtual reality (VR)-based behavioural health curriculum for paediatric residents. First, group interviews were conducted with clinicians to modify the expert instrument. Next, recorded VR simulations (n = 10) were scored to assess interrater reliability between clinicians. Finally, a physician used the tool to assess its ability to discriminate between residents' skill levels (n = 55). EVALUATION: Modifications during group interviews included a change from frequency counts for items related to MI to the binary outcome of present/absent and the addition of an entrustment item. On interrater-reliability testing, the clinician tool demonstrated mostly substantial or near perfect agreement for items related to BHAG. MI items demonstrated a range of agreement. Using 55 recorded VR simulations, the clinician tool discriminated between trained versus untrained residents in BHAG skills (p = 0.002) and level of entrustment (p = 0.001). Differences between groups in MI adherence was not statistically significant (p = 0.095) as it was on the expert instrument. IMPLICATIONS: VR demonstrated potential as a novel approach for obtaining validity evidence for tool development to support workplace-based assessments. Further work assessing usage of the clinician tool in real-world settings is warranted.

Psychologists as leaders in equitable science: Applications of antiracism and community participatory strategies in a pediatric behavioral medicine clinical trial.

Psychologists have an ethical responsibility to advance health equity and can play a significant role in improving health care experiences for families racialized as Black, including those with sickle cell disease (SCD), a group of genetic blood disorders primarily affecting communities of color. Parents of children with SCD report experiences of stigma and discrimination due to racism in the health care system. The current commentary describes the application of antiracism and participatory strategies to the research design, implementation, and dissemination of a behavioral medicine clinical trial (Engage-HU; NCT03442114) of shared decision-making (SDM) for pediatric patients with SCD, including (a) the development of a research question to promote justice for racialized groups; (b) a focus on "redressing imbalances" through SDM and a multidisciplinary, inclusive research team led by a Black psychologist; (c) community participatory approaches through the integration of stakeholder feedback across the study; and (d) centering context by attending to structural realities in response to the COVID-19 and racism pandemics. With attention to the fact that most primary caregivers of children with SCD are Black women, an intersectionality lens was applied. Implications and considerations for psychologists working to advance health equity in medical settings are also discussed. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Understanding Barriers and Facilitators of Attention-Deficit/Hyperactivity Disorder Treatment Initiation and Adherence in Black and Latinx Children.

OBJECTIVE: Despite evidence that consistent treatment is important for Attention-Deficit/Hyperactivity Disorder (ADHD) management, ADHD treatment initiation and adherence remains suboptimal in minoritized children. The goal of this study was to explore barriers and facilitators to ADHD treatment initiation/adherence for minoritized children to further inform development of our family navigation intervention. METHODS: Using a virtual platform, we completed 7 focus group sessions (total n.ß=.ß26) and 6 individual interviews with representatives from 4 stakeholder groups: experienced caregivers of children with ADHD, caregivers of children newly diagnosed with ADHD, family navigators, and clinicians who care for children with ADHD. All caregivers identified as Black and/or Latinx. Separate sessions were conducted for each stakeholder group and caregivers had the option to attend an English or Spanish session. Using a thematic analysis strategy, barriers and facilitators to ADHD treatment initiation and/or adherence were coded in focus group/interview data and themes were identified across groups. RESULTS: The primary barriers to ADHD treatment initiation and/or adherence identified for minoritized children were lack of support from school/healthcare/family members, cultural barriers, limited resources, limited access, and treatmentconcerns, with variability in endorsement across participants. Reported facilitators included caretakers having experience with ADHD, strong support, access to resources, andwitnessing their child...s functional improvement with treatment. CONCLUSIONS: Caregiver experience with and knowledge about ADHD, support, and access to resources facilitate ADHD treatment in minoritized children. The results from this study have the potential to improve ADHD treatment initiation/adherence and outcomes for minoritized children through the development of culturally tailored, multipronged interventions.

Overcoming Vaccine Hesitancy Using Community-Based Efforts.

Vaccine acceptance by parents and caregivers remains a public health challenge that can potentially be addressed via community-based strategies. Such strategies might augment current vaccine hesitancy interventions occurring within medical homes. This article reviews the key challenges and advantages of evidence-based community strategies for overcoming parent/caregiver vaccine hesitancy, specifically (1) community-participatory vaccine hesitancy measurement, (2) communication approaches, (3) reinforcement techniques (eg, incentives, mandates), and (4) community-engaged partnerships (eg, vaccine champion training, vaccination in community settings). This article also discusses important considerations when vaccinating children and adolescents in non-primary care settings (school-based health centers, pharmacies, community events).