Diversity, equity and inclusion considerations in mental health apps for young people: protocol for a scoping review.

INTRODUCTION: After COVID-19, a global mental health crisis affects young people, with one in five youth experiencing mental health problems worldwide. Delivering mental health interventions via mobile devices is a promising strategy to address the treatment gap. Mental health apps are effective for adolescent and young adult samples, but face challenges such as low real-world reach and under-representation of minoritised youth. To increase digital health uptake, including among minoritised youth, there is a need for diversity, equity and inclusion (DEI) considerations in the development and evaluation of mental health apps. How well DEI is integrated into youth mental health apps has not been comprehensively assessed. This scoping review aims to examine to what extent DEI considerations are integrated into the design and evaluation of youth mental health apps and report on youth, caregiver and other stakeholder involvement. METHODS AND ANALYSIS: We will identify studies published in English from 2009 to 29 September 2023 on apps for mental health in youth. We will use PubMed, Global Health, APA PsycINFO, SCOPUS, CINAHL PLUS and the Cochrane Database and will report according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses-Scoping Review Extension guidelines. Papers eligible for inclusion must be peer-reviewed publications in English involving smartphone applications used by adolescents or young adults aged 10-25, with a focus on depression, anxiety or suicidal ideation. Two independent reviewers will review and extract articles using a template developed by the authors. We will analyse the data using narrative synthesis and descriptive statistics. This study will identify gaps in the literature and provide a roadmap for equitable and inclusive mental health apps for youth. ETHICS AND DISSEMINATION: Ethics approval is not required. Findings will be disseminated through academic, industry, community networks and scientific publications.

Community Teens' COVID-19 Experience: Implications for Engagement Moving Forward.

Data collected from pediatric primary care settings during the pandemic suggest an increase in internalizing symptoms and disparities in care based upon minoritized identity status(es). To inform care moving forward, the current study characterized the pandemic and related technology usage experiences of teenaged pediatric patients from communities with high hardship indexes. As part of a larger mixed-methods study, 17 teens (Mean age = 15.99 ± .99) and 10 caregivers independently voiced experiences related to the pandemic during remote focus group and interview sessions. Thematic analyses were used to assess qualitative data; descriptive analyses were used to characterize qualitative data. Despite no direct queries about the pandemic, 41% of teens and 40% of caregivers described their lived experiences during the pandemic. Two subthemes emerged within the primary theme of COVID-19: (1) Wellness/Mental Health and (2) Smartphone Use and Utility. Although distress and negative effects were voiced, questionnaire data indicated normative psychosocial functioning for both teen self-report and caregiver proxy report. Informed by the voiced experiences of teens and their caregivers from communities with high hardship indexes, methods for better assessing and managing internalizing symptoms in teen patients are presented. A multi-modal and multi-informant approach that leverages technology to garner information about teens' experiences and deliver care may help improve the well-being of teens in communities systemically burdened with disparities.

Increasing digital mental health reach and uptake via youth partnerships.

Youth in the United States are facing an unprecedented mental health crisis. Yet, brick-and-mortar mental healthcare, such as face-to-face therapy, is overwhelmingly inaccessible to youth despite research advances in youth mental health. Digital Mental Health tools (DMH), the use of technologies to deliver mental health assessments and interventions, may help to increase mental healthcare accessibility. However, for a variety of reasons, evidence-based DMH have not been successful in reaching youth in real-world settings, particularly those who are most encumbered with access barriers to mental healthcare. This Comment therefore focuses on increasing DMH reach and uptake by young people, particularly among minoritized youth, by engaging in community-based youth partnerships. This idea recognizes and grows from decades' worth of community-based participatory research and youth partnerships successfully conducted by other disciplines (e.g., social work, public health, urban planning, education). Increasing uptake and engagement is an issue that is unlikely to be solved by adult-driven theory and design. As such, we emphasize the necessity of reframing youth input into DMH design and deployment from one-time participants to integral community-based partners. Indeed, recognizing and valuing their expertise to equitably address DMH implementation challenges, youth should help to pose the very questions that they will help to answer throughout the design and implementation planning for DMH moving forward.

Geolocation Patterns, Wi-Fi Connectivity Rates, and Psychiatric Symptoms Among Urban Homeless Youth: Mixed Methods Study Using Self-report and Smartphone Data.

BACKGROUND: Despite significant research done on youth experiencing homelessness, few studies have examined movement patterns and digital habits in this population. Examining these digital behaviors may provide useful data to design new digital health intervention models for youth experiencing homelessness. Specifically, passive data collection (data collected without extra steps for a user) may provide insights into lived experience and user needs without putting an additional burden on youth experiencing homelessness to inform digital health intervention design. OBJECTIVE: The objective of this study was to explore patterns of mobile phone Wi-Fi usage and GPS location movement among youth experiencing homelessness. Additionally, we further examined the relationship between usage and location as correlated with depression and posttraumatic stress disorder (PTSD) symptoms. METHODS: A total of 35 adolescent and young adult participants were recruited from the general community of youth experiencing homelessness for a mobile intervention study that included installing a sensor data acquisition app (Purple Robot) for up to 6 months. Of these participants, 19 had sufficient passive data to conduct analyses. At baseline, participants completed self-reported measures for depression (Patient Health Questionnaire-9 [PHQ-9]) and PTSD (PTSD Checklist for DSM-5 [PCL-5]). Behavioral features were developed and extracted from phone location and usage data. RESULTS: Almost all participants (18/19, 95%) used private networks for most of their noncellular connectivity. Greater Wi-Fi usage was associated with a higher PCL-5 score (P=.006). Greater location entropy, representing the amount of variability in time spent across identified clusters, was also associated with higher severity in both PCL-5 (P=.007) and PHQ-9 (P=.045) scores. CONCLUSIONS: Location and Wi-Fi usage both demonstrated associations with PTSD symptoms, while only location was associated with depression symptom severity. While further research needs to be conducted to establish the consistency of these findings, they suggest that the digital patterns of youth experiencing homelessness offer insights that could be used to tailor digital interventions.

Caregiver Expressed Emotion in Families of Youth With Spina Bifida: Demographic, Medical, and Family Correlates.

OBJECTIVE: Caregiver expressed emotion (EE), an interview-based measure of emotional valence within an interpersonal relationship, is associated with psychosocial outcomes across multiple conditions. Guided by a model implicating a bidirectional role of "Chronic Family Stress" in the unfolding of EE in family environments, the current study examined demographic, medical, and family-level variables in association with EE in caregivers of children with spina bifida (SB). METHODS: Data were combined from 2 distinct studies of families with a child with SB, resulting in a sample of 174 (ages 8-17). Linear regressions examined the family stressors and child variables in association with maternal and paternal warmth and criticism, as coded from EE interviews. RESULTS: Higher levels of family stress were associated with paternal criticism (p = .03), while having non-Hispanic White children was associated with both maternal and paternal criticism (ps < .005). Having children younger in age (ps < .01) and without a shunt (ps < .01) was associated with higher warmth. CONCLUSIONS: Family stressors, absence of the negative impacts of systemic racism, shunt status, and age appear to be associated with the expression of EE in caregivers of a child with SB. Findings highlight multiple assessment considerations, including assessing EE when children are younger to engage caregivers with children with SB when they are more likely to be expressing more warmth. Pinpointing factors associated with caregiver EE in SB will help to better identify families at risk for high levels of criticism and also aid in the development of targeted prevention and intervention programs.

A Scoping Review of Associations Between Cannabis Use and Anxiety in Adolescents and Young Adults.

Cannabis and anxiety are both rising issues that impact young people. This review seeks to explore the association between anxiety and cannabis in adolescents and young adults (AYA). A database search was run retrospectively from July 2020 through calendar year 2013. Articles had to present outcomes examining cannabis use and symptoms of anxiety, be written in English, contain samples with ≥ 50% who are age 25 or younger, and be published in a peer-reviewed journal. Forty-seven studies were identified that examined the relationship between anxiety and cannabis use. Twenty-three studies found a positive association that greater anxiety among AYA was associated with greater cannabis use. In contrast, seven studies found a negative association that greater anxiety was related to less cannabis use. And finally, 17 studies found no clear association between anxiety and cannabis use. Further research is needed to better understand the relationship between anxiety and cannabis use.

Ethical considerations for developing pediatric mhealth interventions for teens with socially complex needs.

TOPIC: Mobile Health (mHealth) stands as a potential means to better reach, assess, and intervene with teens with socially complex needs. These youth often face overlapping adversities including medical illness and a history of experiencing adverse childhood experiences (ACEs). Clinicians are faced with navigating ethical decisions when developing mHealth tools for teens who have socially complex needs. Many tools have been developed for adults from the general population. However, despite the development of thousands of mHealth interventions, developers tend to focus on designing for usability, engagement, and efficacy, with less attention on the ethical considerations of making such tools. PURPOSE: To safely move mHealth interventions from research into clinical practice, ethical standards must be met during the design phase. In this paper we adapt the Four Box Model (i.e., medical indications, preferences of patients, quality of life, and contextual features) to guide mHealth developers through ethical considerations when designing mHealth interventions for teens who present with a medical diagnosis and a history of ACEs. SOURCES: A review of language, inclusive features, data sharing, and usability is presented using both the Four Box Model and potential scenarios to guide each consideration. CONCLUSIONS: To better support designers of mHealth tools we present a framework for evaluating applications to determine overlap with ethical design and are well suited for use in clinical practice with underserved pediatric patients.

Median arcuate ligament syndrome: a cost analysis to determine the economic burden of a rarely diagnosed disease.

Background: Chronic abdominal pain (CAP) is a medical condition resulting in enormous economic burden and healthcare utilization costs. One understudied source of CAP is the median arcuate ligament syndrome (MALS). MALS is often not diagnosed and treated for a variety of reasons, including the fact that MALS is highly comorbid with psychological symptoms and psychiatric disorders similar to CAP. To better inform future work on the study of MALS, we undertook a pilot study to estimate the economic impact and public health burden of this condition. We hypothesized that MALS imposes a significant public health burden. Methods: Pediatric and adult patients enrolled in a prospective study undergoing multidisciplinary evaluation and treatment for MALS at a tertiary care facility were invited to participate in a brief self-report survey, the Direct and Indirect Medical Care Impact of MALS Form, to capture health care resources including procedures, surgeries, health care visits, and absenteeism (school and work). To estimate costs from the Direct and Indirect Medical Care Impact of MALS Form, the medical care usage data self-reported by patients were converted to dollar value utilizing FSC-93 billing data and corresponding current procedural terminology (CPT) codes for procedures and provider visits one year prior to surgery and then following surgery. Descriptive analyses were conducted to characterize the sample in terms of demographics and reported absences from school and work. Results: One hundred and nineteen patients (mean age = 30.9 ± 13.0) completed the questionnaires, yielding a 57% response rate. 82.4% (n = 98) of the participants were female and 90.8% (n = 108) were non-Hispanic/Latine white. The mean and median surgical follow-up periods were 5.3 and 5.4 years, respectively. Overall, median cost of provider and ancillary healthcare provider visits for each patient was (US)$19,119 including the pre-operative and post-operative visits. The mean cost for providers alone was (US)$28,908. Wilcoxon signed-ranks tests indicated that the postoperative missed number of days of school were significantly lower than the pre-surgical number of missed school days (Z = -3.36, p = 0.001). Similarly, there were significantly less missed work-days following surgery than before for the entire sample (Z = -2.86, p = 0.004). Conclusion: Median arcuate ligament syndrome imposes a large economic burden on patients and the healthcare system. The current findings, although reflective of a homogenous population, are adding to a growing body of literature suggesting that healthcare disparities play a role in the low rates of diagnosis and treatment of MALS.

mHealth Uses and Opportunities for Teens from Communities with High Health Disparities: A Mixed-Methods Study.

Despite widespread access to smartphones, teens from communities facing significant behavioral health disparities typically have low mobile health (mHealth) engagement. The purpose of this study was to characterize teen and caregiver perspectives about smartphone use and access, mHealth, and how mHealth could address teens' behavioral health needs during the pandemic and beyond. Remote recruitment and methodologies were used to engage 17 teens (M age = 15.9 ± 0.9) and 10 caregivers living in urban communities with significant socioeconomic and health disparities. Participants completed a focus group or interview session (based on preference) and self-report questionnaires (e.g., behavioral health history, pandemic impacts, technology use). Qualitative and quantitative data were analyzed using thematic and descriptive analyses, respectively. Both quantitative and qualitative data indicated relevant behavioral health concerns for teens and their families, impacts from the pandemic, and frequent smartphone use. Primary teen and caregiver themes included (1) health and wellness concerns, (2) barriers, (3) use of smartphones, (4) impacts of smartphones, and (5) opinions/suggestions for mHealth. This multi-method and multi-informant study highlighted the lived experiences of teens from marginalized communities and offered key insights to increase the acceptability and real-world engagement of mHealth tools. To address barriers to care for this population beyond the pandemic, clear messaging must be used for mHealth tools (e.g., data privacy, expectations of use). These findings testify to the importance of collaboration with teens and caregivers from communities facing large health disparities in future mHealth design, development, and deployment.

Digital Screening and Automated Resource Identification System to Address COVID-19-Related Behavioral Health Disparities: Feasibility Study.

BACKGROUND: Digital mental health (DMH) tools use technology (eg, websites and mobile apps) to conveniently deliver mental health resources to users in real time, reducing access barriers. Underserved communities facing health care provider shortages and limited mental health resources may benefit from DMH tools, as these tools can help improve access to resources. OBJECTIVE: This study described the development and feasibility evaluation of the Emotional Needs Evaluation and Resource Guide for You (ENERGY) System, a DMH tool to meet the mental health and resource needs of youth and their families developed in the context of the COVID-19 pandemic. The ENERGY System offers a brief assessment of resource needs; problem-solving capabilities; and symptoms of depression, anxiety, trauma, and alcohol and substance use followed by automated, personalized feedback based on the participant's responses. METHODS: Individuals aged ≥15 years were recruited through community partners, community events, targeted electronic health record messages, and social media. Participants completed screening questions to establish eligibility, entered demographic information, and completed the ENERGY System assessment. Based on the participant's responses, the ENERGY System immediately delivered digital resources tailored to their identified areas of need (eg, relaxation). A subset of participants also voluntarily completed the following: COVID-19 Exposure and Family Impact Survey (CEFIS) or COVID-19 Exposure and Family Impact Survey Adolescent and Young Adult Version (CEFIS-AYA); resource needs assessment; and feedback on their experience using the ENERGY System. If resource needs (eg, housing and food insecurity) were endorsed, lists of local resources were provided. RESULTS: A total of 212 individuals accessed the ENERGY System link, of which 96 (45.3%) completed the screening tool and 86 (40.6%) received resources. Participant responses on the mental health screening questions triggered on average 2.04 (SD 1.94) intervention domains. Behavioral Activation/Increasing Activities was the most frequently launched intervention domain (56%, 54/96), and domains related to alcohol or substance use were the least frequent (4%, 4/96). The most frequently requested support areas were finances (33%, 32/96), transportation (26%, 25/96), and food (24%, 23/96). The CEFIS and CEFIS-AYA indicated higher than average impacts from the pandemic (ie, average scores >2.5). Participants were satisfied with the ENERGY System overall (65%, 39/60) as well as the length of time it took to answer the questions (90%, 54/60), which they found easy to answer (87%, 52/60). CONCLUSIONS: This study provided initial support for the feasibility of the ENERGY System, a DMH tool capable of screening for resource and mental health needs and providing automated, personalized, and free resources and techniques to meet the identified needs. Future studies should seek direct feedback from community members to further improve the ENERGY System and its dissemination to encourage use.

A Call to Action: Using and Extending Human-Centered Design Methodologies to Improve Mental and Behavioral Health Equity.

Mental health disparities directly tie to structural racism. Digital mental health (DMH), the use of technologies to deliver services, have been touted as a way to expand access to care and reduce disparities. However, many DMH fail to mitigate the persistent disparities associated with structural racism that impact delivery (e.g., costs, dependable internet access)-and may even exacerbate them. Human-centered design (HCD) may be uniquely poised to design and test interventions alongside, rather than "for," marginalized individuals. In employing HCD methodologies, developers may proceed with a vested interest in understanding and establishing empathy with users and their needs, behaviors, environments, and constraints. As such, HCD used to mindfully address structural racism in behavioral health care may address shortcomings of prior interventions that have neglected to elevate the voices of marginalized individuals. We argue that a paradigm shift in behavioral health services research is critically needed-one that embraces HCD as a key methodological framework for developing and evaluating interventions with marginalized communities, to ultimately promote more accessible, useful, and equitable care. The current commentary illustrates practical examples of the use of HCD methodologies to develop and evaluate DMH designed with marginalized populations, while also highlighting its limitations and need for even greater inclusivity. Following this, calls to action to learn from and improve upon HCD methodologies will be detailed. Acknowledging potential limitations of current design practices, methodologies must ultimately engage representative voices beyond research participation and invest in their active role as compensated and true collaborators to intervention design.

Patient-Reported Experiences With Median Arcuate Ligament Syndrome: Resilience and Resources Required.

Objective: Median arcuate ligament syndrome (MALS) is a vascular condition that is treated surgically. MALS is a diagnosis of exclusion and therefore often requires that pediatric patients undergo an exhaustive number of tests and potential experiences with misdiagnosis before receiving an accurate diagnosis and treatment. The purpose of the current mixed-methods study was to assess the pediatric patient- and parent-reported experience of (a) coping with and managing symptoms associated with MALS and (b) the diagnostic, treatment, and recovery process for pediatric MALS. Methods: Nine postsurgical pediatric patients (M age = 20.11 ± 3.59; all <18 at time of surgery) and 6 parents participated in semistructured focus groups and completed self-report questionnaires about their experiences and current functioning. Results: Four themes emerged: (a) the impact of MALS (physical and psychosocial), (b) uncertainties and feeling misunderstood, (c) extensive medical tests, and (d) mental health impacts, with an additional three themes related to specific querying (i.e., appreciation, recommendations, and interdisciplinary treatment team). With the exception of variable long-term physical impacts, patients and their parents reported fairly consistent experiences, and the content of these themes was consistent with self-reported quantitative data. Conclusions: The current study highlights the resilience and resources seemingly required for effective diagnosis and intervention for pediatric MALS. The need for increased knowledge about MALS, the inclusion of an interdisciplinary treatment team, and long-term follow-up for pediatric patients with MALS are implicated.

The Transition from Pediatric to Adult Health Care in Young Adults with Spina Bifida: Demographic and Physician-Related Correlates.

OBJECTIVE: This study examined the transition to adult health care for individuals with spina bifida (SB) and explored demographic and relational associations with transition status. METHOD: Young adults with SB (18-30; n = 326) were recruited to complete an anonymous, online survey. Frequencies of reported experiences, behaviors, and satisfaction with the transition to adult health care were examined. Nonparametric tests and exploratory hierarchical regressions were used to examine demographic and relational factors with physicians between those (1) who had and had not yet transitioned and (2) who did and did not return to pediatric care. RESULTS: Most of the sample reported having transitioned to adult health care, with three-quarters reporting that their primary physician is an adult primary care doctor. Individuals who had transitioned were more likely to be younger (p = 0.01) and to not have a shunt (p = 0.003). Beyond the effect of age and shunt status, relational factors with pediatric providers were not associated with transition (p > 0.1). After transition, over one-third reported returning to a pediatric provider. Those who did not return to pediatric care were more likely to have myelomeningocele, be a full-time student, and to not have a shunt (p < 0.001). Beyond the effect of age and shunt status, lower ratings of communication with adult providers were associated with a return to pediatric care (p = 0.04). CONCLUSION: The results highlight the need for additional research about barriers and facilitators to the transition to adult health care to target interventions that support this critical milestone in young adults with SB.

Benefit-finding among young adults with spina bifida.

The purpose of the current study was to examine benefit-finding in a sample of young adults with SB and assess relationships between demographic and medical variables and benefit-finding. Young adults with SB (N = 329), ranging in age from 18 to 30 (M = 23.44 ± 2.93), completed the Benefit-Finding Scale (BFS), a 17-item self-report questionnaire, and reported on demographic and medical information related to their SB diagnosis. Participants endorsed a range of benefits associated with living with SB. The most frequently endorsed benefits were related to personal strengths, interpersonal relationships, and life philosophy. Younger age, majority race, higher education level, and employment were significantly associated with higher BFS scores. Young adults with SB report benefits associated with their chronic condition. Future research should examine these benefits in relation to psychosocial outcomes.

An overview of and recommendations for more accessible digital mental health services.

Mental health concerns are common, and various evidence-based interventions for mental health conditions have been developed. However, many people have difficulty accessing appropriate mental health care and this has been exacerbated by the COVID-19 pandemic. Digital mental health services, such as those delivered by mobile phone or web-based platforms, offer the possibility of expanding the reach and accessibility of mental health care. To achieve this goal, digital mental health interventions and plans for their implementation must be designed with the end users in mind. In this Review, we describe the evidence base for digital mental health interventions across various diagnoses and treatment targets. Then, we explain the different formats for digital mental health intervention delivery, and offer considerations for their use across key age groups. We discuss the role that the COVID-19 pandemic has played in emphasizing the value of these interventions, and offer considerations for ensuring equity in access to digital mental health interventions among diverse populations. As healthcare providers continue to embrace the role that technology can play in broadening access to care, the design and implementation of digital mental healthcare solutions must be carefully considered to maximize their effectiveness and accessibility.

Targeting Coping to Improve Surgical Outcomes in Pediatric Patients With Median Arcuate Ligament Syndrome: Feasibility Study.

Background: Median arcuate ligament syndrome (MALS) is a vascular compression syndrome leading to postprandial epigastric pain, nausea, and weight loss; it can be treated surgically. While most patients report improved quality of life following surgical intervention, 30% continue to experience chronic abdominal pain. Pre-surgical diagnoses of depression and/or anxiety have been found to significantly predict post-surgical: quality of life, highest experience of pain, anxiety, and parent- and self-reported coping strategies. As such, increasing the coping strategies of pediatric patients with MALS may impact their post-surgical outcomes. The purpose of the current study was to: (1) implement a pre-operative cognitive behavioral therapy protocol with a focus on psychoeducation and coping strategies; and (2) determine feasibility of a pre-surgical intervention for this population. Method: Children (<18 years of age) with a diagnosis of MALS who were eligible for surgical intervention were invited to participate in a 7-week in-person or video-based pre-surgical cognitive behavioral therapy intervention. Psychiatric comorbidities were assessed at baseline and post-surgery; patient-reported distress, pain interference and intensity, health-related quality of life, and health status were assessed at four time points (baseline, week 4, week 7, and post-surgery). Descriptive analyses were used to characterize the sample, assess feasibility outcomes (i.e., attrition rates), and explore symptom-based outcomes across time. Results: Twelve pediatric patients (M age = 15.2 ± 1.7; 91.7% female) and their parents (91.7% mothers) participated. Feasibility metrics based on protocol completion were exceeded for engagement at the stages of consent (68.4% vs. goal of ≥50%), treatment initiation (92.3% vs. 85%), and treatment completion (84.6% vs. 75%). Out of the 12 participants, nine (75%) met criteria for at least one comorbid psychiatric diagnosis at baseline and nine (75%) elected to undergo MALS surgery after completing the intervention. Conclusion: The intervention implementation was feasible, despite chronic pain symptoms experienced by the sample, a high prevalence of psychiatric diagnoses, and an international pandemic, suggesting that it would be beneficial to further evaluate the efficacy of the intervention. Future research should include stakeholder input in the design, deployment, and evaluation of a pilot efficacy trial of pre-surgical cognitive behavioral therapy for pediatric patients with MALS.

"We Are Anxious Every Day": COVID-19 Impacts on Youth with Spina Bifida.

OBJECTIVE: This study examined the impact of the COVID-19 pandemic on a national sample of adolescents and young adults (AYA) with spina bifida (SB) and parents of youth with SB. METHODS: AYA with SB (15-25; n = 298) and parents of children with SB (n = 200) were recruited to complete an anonymous, online survey in English or Spanish. Participants provided information about demographic and condition characteristics, as well as their technology access and use for behavioral health care. They also completed the COVID-19 Exposure and Family Impact Survey (CEFIS), which includes Exposure, Impact, and Distress subscales. Exploratory correlations and t-tests were used to examine potential associations between CEFIS scores and demographic, medical, and access characteristics. Qualitative data from the CEFIS were analyzed using thematic analysis. RESULTS: Scores on the Exposure, Impact, and Distress subscales demonstrated significant variability. Demographic associations with Exposure differed for those with higher Impact and Distress (e.g., White, non-Hispanic/Latino AYA reported higher rates of exposure [p = .001]; AYA who identified with a minoritized racial/ethnic identity reported greater impact [p ≤ .03]). Impacts to mental and behavioral health (n = 44), interference with medical care (n = 28), and interpersonal challenges (n = 27) were the most commonly occurring qualitative themes. CONCLUSIONS: The current findings implicate differential impacts to individuals with SB and their families based on demographic, medical, and systemic factors (e.g., minoritized status). Recommendations to support families with SB and other pediatric conditions are made.

A Systematic Review of Benefit-Finding and Growth in Pediatric Medical Populations.

OBJECTIVE: This review synthesizes the literature on benefit-finding and growth (BFG) among youth with medical illnesses and disabilities and their parents. Specifically, we summarized: (a) methods for assessing BFG; (b) personal characteristics, personal, and environmental resources, as well as positive outcomes, associated with BFG; (c) interventions that have enhanced BFG; and (d) the quality of the literature. METHODS: A medical research librarian conducted the search across PubMed, Scopus, PsycInfo, Google Scholar, and Cochrane Library. Studies on BFG among children ages 0-18 with chronic illnesses and disabilities, or the parents of these youth were eligible for inclusion. Articles were uploaded into Covidence; all articles were screened by two reviewers, who then extracted data (e.g., study characteristics and findings related to BFG) independently and in duplicate for each eligible study. The review was based on a systematic narrative synthesis framework and adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (PROSPERO registration number: CRD42020189339). RESULTS: In total, 110 articles were included in this review. Generally, BFG capabilities were present across a range of pediatric health conditions and disabilities. Correlates of both youth and parent BFG are presented, including personal and environmental resources, coping resources, and positive outcomes. In addition, studies describing interventions aimed at enhancing BFG are discussed, and a quality assessment of the included studies is provided. CONCLUSIONS: Recommendations are provided regarding how to assess BFG and with whom to study BFG to diversify and extend our current literature.

The Adolescent/Young Adult Self-Management and Independence Scale (AMIS-II): Expanding evidence for validity and reliability.

PURPOSE: The purpose of this longitudinal study was to evaluate the internal consistency reliability and construct validity of the Adolescent/Young Adult Self-Management and Independence Scale-II (AMIS-II), an interview-based measure of self-management for youth with chronic health conditions. METHODS: A diverse sample of adolescents and young adults (AYA) with spina bifida (SB) (n = 64 AYA; mean 20.88; age range 18-25 years) completed an AMIS-II interview. Six years earlier, parents from 55 families completed questionnaires that assessed children's responsibility for SB-related care (Sharing of Spina Bifida Management Responsibilities) and their ability to perform skills across condition-related tasks (The Spina Bifida Independence Survey). Parents also reported on child's communication skills, adaptive behaviors, and independent management of finances (Adaptive Behavior Assessment System-Second Edition; Scales of Independent Behavior-Revised). Descriptive and correlational analyses were conducted to assess the construct validity and the internal consistency reliability of the AMIS-II. RESULTS: The AMIS-II demonstrated excellent internal consistency reliability (AMIS-II total scale α= 0.95; subscales α= 0.90 -0.91). Evidence in support of construct validity was found in associations between the AMIS-II and measures of child responsibility for SB-related care, ability to perform condition-related skills, and adaptive behaviors (r's = 0.378 -0.777; p's < 0.05). CONCLUSION: This study provides further evidence of strong reliability and validity for the AMIS-II. Additional research with this measure will facilitate a better understanding of factors related to self-management behaviors in adolescents and young adults with spina bifida.