Facilitators and Barriers to Shared Decision-Making Communication Between Latina Mothers and Pediatric Mental Healthcare Providers.

This study assessed communication factors influencing shared decision-making (SDM) between language-congruent clinicians and Latina mothers of pediatric mental health patients. The sample comprised Latinx youth up to 22 years old who were enrolled in mental healthcare and attended mental health-related sessions with their parent. One hundred transcripts depicting mental health visits were coded using the Conversation Analysis framework. Coding included inductive coding that came from analyzing the structure, or orderliness, of the visits and content discussed that affects SDM. Thematic qualitative analysis revealed that facilitators to SDM included collaborative engagement, parents being active in tailoring session content, and integrating the preferences, roles, and next steps for treatment among all participants. Barriers included unskilled interpersonal interactions undermining rapport, off-topic conversations becoming the session's focus, poor time management, and irregularly integrating parent/patient preferences into the clinician's decisions regarding the child's treatment. Additionally, visit content, structure, tone, and interpersonal engagement were factors that variably facilitated or served as barriers to patient participation in SDM and were integral to collaborative, family-centered care. These findings delineated characteristics of pediatric mental health conversations and identified areas to strengthen communication between parents, patients, and clinicians to shift toward more effective SDM and improve patient outcomes among Latinx families.

Scope-of-Practice Expansions Associated with Reduced Racial Disparities in Pediatric Mental Health Care.

To examine the association between scope-of-practice (SoP) regulations and racial disparities in pediatric mental health services. We used the National Survey of Children's Health (2016-2020; n = 33,790) to examine racial disparities in unmet mental health care needs and receipt of mental health medication between states with and without SoP expansions for psychologists and nurse practitioners (NP). Our primary outcomes were (1) unmet mental health care needs and (2) receipt of mental health medication. We examined heterogeneous treatment effects of SoP expansion on the outcomes using logistic regression with interaction terms between SoP expansion and race/ethnicity. We estimated population-level racial disparities for both outcomes stratified by SoP expansion to identify differences in racial disparities. The psychologist SoP expansion-associated reduction in unmet need was 15.8 percentage-points (CI= -25.3, -6.2) larger for Other-race children than for White children. The psychologist SoP expansion-associated increase in medication was 5.1%-points (CI=. 0.8, 9.4) larger for Black children and 5.6%-points (CI = 0.5, 10.8) for Other-race children. No differences were found for NP SoP expansion. Racial disparities in both outcomes were lower in psychologist SoP expansion states but varied in NP SoP states. Expanded SoP was generally associated with lower racial disparities in pediatric mental health care access.

Outcomes that Matter to Youth and Families in Behavioral Health Services.

Patient-centered outcomes research helps youth and families using behavioral health services make informed decisions about treatments to help them achieve the outcomes most important to them. However, there are few efforts to identify the outcomes valued by youth and families systematically. This project aimed to support the development of behavioral health services that deliver outcomes valued by families by identifying the outcomes that youth and young adults with behavioral health needs and caregivers say matter most to them. We engaged 34 youth and young adults (YYA) with behavioral health needs, alongside 42 caregivers from six U.S. regions, in two rounds of one-hour virtual focus groups. The initial round involved participants identifying what they hoped to gain from using behavioral health services for personal, familial, and parental or child well-being and the attributes of positive service experiences. We coded responses using qualitative analytical software, culminating in synthesized reports. Subsequently, the second round entailed participants' review and refinement of initial findings. Across sessions, each group reported the top three outcomes deemed most important for children, YYA, parents, families, and their service experiences. YYA identified being understood by others, improving their interpersonal relationships, and feeling heard as the highest priority behavioral health service outcomes. Caregivers of children and youth with behavioral health needs identified having accessible services that meet their needs, having providers that collaborate effectively with parents and other service systems, and experiencing consistent and continuous behavioral health care for their child as the most important behavioral health service outcomes. Both YYA with behavioral health needs and caregivers of children and youth prioritized gaining the necessary knowledge, resources, and tools to support their or their child's behavioral health. Additionally, both participant groups emphasized the importance of effective communication with providers, within their families, and with peers. Minimizing judgment and stigma from society, providers, and other professionals also emerged as a critical outcome for these groups. It is essential for research and policy development to focus on and cater to the outcomes that are important and valued by YYA and their families to maximize family engagement in care.

Pediatric Mental Health Care and Scope-of-Practice Expansions.

To examine the association between psychologist and nurse practitioner scope-of-practice (SoP) regulations and pediatric mental health service access. A nationally representative sample of children with mental health needs was identified using 5 years of National Survey of Children's Health (2016-2020). Utilization was measured in two ways: (1) unmet mental health care needs and (2) receipt of mental health medication. Expanded SoP for psychologists and nurse practitioners was measured based on the child's state of residence and the year of the survey. The associations between both SoP expansion and both outcomes were assessed using logistic regression models adjusted for multiple covariates. The probability of having unmet mental health needs was 5.4 percentage points lower (95% CI - 0.102, - 0.006) for children living in a state with psychologist SoP expansion; however, there was no significant difference in unmet mental health needs between states with and without NP SoP expansion. The probability of receiving a mental health medication was 2.0 percentage points higher (95% CI 0.007, 0.034) for children living in a state with psychologist SoP expansion. Conversely, the probability of receiving a mental health medication was 1.5 percentage points lower (95% CI - 0.023, - 0.007) for children living in a state with NP SoP expansion. Expanded SoP for psychologists is associated with improved access to pediatric mental health care in terms of both unmet need and receiving medication. Expanded SoP for NPs, however, was not associated with unmet need and lower receipt of medication.

Factors Associated with Substance Use Disorder among High-Need Adolescents and Young Adults in North Carolina.

Background: Prevalence of substance use disorders (SUD) is high among adolescents and young adults (AYAs) with complex medical needs. Little is known about risk factors for SUD in this population. Methods: This retrospective cohort study used electronic health record data from a large academic hospital system (2015-2019) to identify adolescents (aged 10-17) and young adults (aged 18-27) with intellectual/developmental disorders, psychiatric conditions, or complex medical conditions. Logistic regression was used to identify demographic, clinical, and neighborhood-level risk factors associated with SUD in this population. Results: A total of 149 adolescents and 536 young adults had a SUD diagnosis (6.7% and 20.6%, respectively). Among adolescents, notable risk factors for SUD included age (adjusted odds ratio [aOR] = 1.42, 95% confidence interval [CI] = [1.31, 1.54]), Hispanic ethnicity (aOR = 2.10, 95% CI = [1.10, 3.99]), additional psychoactive medication classes (aOR = 1.27, 95% CI = [1.11, 1.46]), and living in a "high" child opportunity index (COI) (aOR = 2.06, 95% CI [1.02, 4.14]) or a "very high" COI (aOR = 3.04, 95% CI [1.56,5.95]) area. Among young adults, notable risk factors included being male (aOR = 2.41, 95% CI [1.91, 3.05]), being Black (aOR = 1.64, 95% CI [1.28, 2.09]), and additional non-psychoactive (aOR = 1.07, 95% CI [1.03, 1.11]) or psychoactive medication classes (aOR = 1.17, 95% CI [1.07, 1.28]). Limitations: These descriptive analyses are limited to one large academic hospital system in North Carolina and may not be representative of all high-need AYAs in the state. Conclusions: Several demographic, clinical, and neighborhood risk factors are associated with SUD in high-need AYAs.

Examining Psychologist Prescriptive Authority as a Cost-Effective Strategy for Reducing Suicide Rates.

Six states (NM, LA, IL, IA, ID, CO) grant prescriptive authority to qualified psychologists, and research has shown that these policies are associated with a reduction in suicides. In this study, we assess the cost-effectiveness of these policies in reducing suicide rates. This study used a Markov Model with a time horizon of 20 years to estimate the incremental net monetary benefit (INMB) of the policy from the societal perspective with a simulated cohort of 100,000 people. Transition probabilities and utilities were collected from the literature, and costs were assessed using a mixed macro-micro costing approach. Using this approach, we found that the 20-year INMB for the policy was estimated to be $12.81 million ($USD) per quality-adjusted life year (QALY). The probability of cost-effectiveness was greater than 50% at a willingness-to-pay threshold as low as $10,000 per QALY. The probability of cost-effectiveness was only modestly associated with the implementation costs of the policy, but was sensitive to the estimated effect of the policy intervention. The models estimated in this study support prescriptive authority for psychologists as a cost-effective strategy for reducing state-level suicide rates. A considerable amount of research is needed to understand the impact of this policy with finer granularity.

Adverse Childhood Experiences Across Birth Generation and LGBTQ+ Identity, Behavioral Risk Factor Surveillance System, 2019.

Objectives. To identify and describe differences in exposure to adverse childhood events (ACEs) by birth generation and lesbian, gay, bisexual, transgender, and queer plus (LGBTQ+) identity. Methods. Using data from the 2019 Behavioral Risk Factor Surveillance System, we examined the odds of experiencing 4 or more ACEs for Generation X, millennials, and Generation Z relative to baby boomers (n = 56 262). We also explored differences between generations based on LGBTQ+ identity. Results. The odds of experiencing 4 or more ACEs were higher for Generation X (odds ratio [OR] = 1.67; 95% confidence interval [CI] = 1.52, 1.83), millennials (OR = 2.12; 95% CI = 1.92, 2.35), and Generation Z (OR = 2.12; 95% CI = 1.79, 2.52) than for baby boomers. This disparity was amplified by LGBTQ+ identity (P = .016). The frequency of individual ACEs also varied by generation. Conclusions. Exposure to 4 or more ACEs has increased for each generation since the baby boomers, and more so for the LGBTQ+ population. The ACEs experienced differ by generation. Public Health Implications. Increasing ACE scores suggest that younger generations may have an increased risk of ACE-related health problems. Policies are needed to prevent ACE exposure and address the potential fallout from the ACEs that have seen the largest increases. (Am J Public Health. 2022;112(4):662-670. https://doi.org/10.2105/AJPH.2021.306642).

Feasibility of a best-worst scaling exercise to set priorities for autism research.

BACKGROUND: The preferences of autism stakeholders regarding the top priorities for future autism research are largely unknown. OBJECTIVE: This study had two objectives: First, to examine what autism stakeholders think new research investments should be and the attributes of investment that they consider important, and second, to explore the feasibility, acceptability and outcomes of two prioritization exercises among autism stakeholders regarding their priorities for future research in autism. DESIGN: This was  a prospective stakeholder-engaged iterative study consisting of best-worst scaling (BWS) and direct prioritization exercise. SETTING AND PARTICIPANTS: A national snowball sample of 219 stakeholders was included: adults with autism, caregivers, service providers and researchers. MAIN OUTCOME MEASURES: The main outcomes measures were attributes that participants value in future research investments, and priority research investments for future research. RESULTS: Two hundred and nineteen participants completed the exercises, of whom 11% were adults with autism, 58% were parents/family members, 37% were service providers and 21% were researchers. Among stakeholders, the BWS exercises were easier to understand than the direct prioritization, less frequently skipped and yielded more consistent results. The proportion of children with autism affected by the research was the most important attribute for all types of stakeholders. The top three priorities among future research investments were (1) evidence on which child, family and intervention characteristics lead to the best/worst outcomes; (2) evidence on how changes in one area of a child's life are related to changes in other areas; and (3) evidence on dietary interventions. Priorities were similar for all stakeholder types. CONCLUSIONS: The values and priorities examined here provide a road map for investigators and funders to pursue autism research that matters to stakeholders. PATIENT OR PUBLIC CONTRIBUTION: Stakeholders completed a BWS and direct prioritization exercise to inform us about their priorities for future autism research.

Access to Effective Communication Aids and Services among American Sign Language Users across North Carolina: Disparities and Strategies to Address Them.

OBJECTIVE: To examine the extent to which communication aids and services used by American Sign Language (ASL) users and their healthcare providers aligns with preferences, satisfaction, and unmet needs; and to elicit from stakeholders strategies to address disparities. METHODS: A cross-sectional study was conducted of ASL users in North Carolina. Respondents completed an online survey presented in ASL and English (N = 189). McNemar's tests were used to compare rates of preferred and actual methods of communication. Logistic regression models explored relationships of accessible communication with dissatisfaction and unmet need. Qualitative interviews explored satisfaction with communication and reflections on what works, what does not, and outcomes (N = 54). RESULTS: While 45% of respondents used a professional sign language interpreter, 65% of respondents preferred to do so. Accessible communication was associated with lower odds of dissatisfaction with communication (OR = .19, p < .05). Dissatisfaction with communication was associated with greater odds of unmet need for healthcare (OR = 8.95, p < .05). Interview respondents emphasized their preference for on-site interpreters, explaining how video remote interpreting was subject to technical difficulties while writing back-and-forth led to important gaps in understanding. CONCLUSIONS: While ASL users prefer to use professional, on-site sign language interpreters to communicate with providers, most use some other form of communication instead. Findings emphasize the need for policy strategies to facilitate access to high quality, well-functioning professional interpreter services and to have those services delivered on-site to overcome disparities.

Predictors of Unmet Family Support Service Needs in Families of Children with Special Health Care Needs.

OBJECTIVES: This study describes rates of perceived and unmet need for family support services (care coordination, respite care, and family mental health care) among a national sample of children with special health care needs (CSHCN), distinguishing children with emotional, behavioral, or developmental problems (EBDPs) from children with primarily physical chronic conditions. It also examines if a child having EBDPs is associated with perceived and unmet family support service needs and investigates public versus private health insurance's moderating effect on this association. METHODS: Using data from the National Survey of Children with Special Health Care Needs (2005/2006 and 2009/2010), this cross-sectional study uses multi-level, fixed effects logistic regression. RESULTS: When compared to CSHCN with no EBDPs, parents of CSHCN with EBDPs report greater need for all family support services and greater rates of unmet need for all support services. This pattern of greater need for CSHCN with EBDPs versus those without is similar among those with public and private health insurance. Among CSHCN with family support needs, however, the pattern differs. For CSHCN with EBDPs, having public insurance is associated with lower probabilities of unmet needs compared to private insurance. For CSHCN without EBDPs, having public insurance has a mixed effect on probability of reporting unmet need. CONCLUSION: Having EBDPs and public insurance is associated with increased perceived need, but public insurance also confers particular benefit for children with EBDPs.

Post-discharge Health Services Use for Patients with Serious Mental Illness Treated at an Emergency Department Versus a Dedicated Community Mental Health Center.

Emergency Medical Service (EMS) alternative destination programs may lead to improved care quality among those experiencing mental health crises but the association with cost and emergency department (ED) recidivism remains unexamined. We compare rates of post-discharge health services use and Medicaid spending among patients transported to an ED or community mental health center (CMHC) finding higher ED recidivism for patient treated in the ED, compared to those treated in a CMHC (68% vs 34%, p < 0.001). There were no differences in Medicaid spending or health services use post-discharge suggesting EMS-operated alternative destination programs may be cost-neutral for Medicaid programs.

Disparities in Self-reported Access to Patient-centered Medical Home Care for Children With Special Health Care Needs.

BACKGROUND: Efforts to transform primary care have been underway for over a decade. Yet, we lack understanding of the progress made in scaling up this care model nationwide and on whether patient-centered medical home (PCMH) has benefited every group of children with special health care needs (CSHCNs). OBJECTIVE: The main objective of this study was to examine variation in caregiver service experience concordant with PCMH care over time and by child characteristics. RESEARCH DESIGN: This was a cross-sectional pooled data analysis using the 2003-2012 Medical Expenditures Panel Survey data for CSHCNs, aged 5-17 years. Logistic regressions were implemented, accounting for child and parent sociodemographic, child's health insurance, and contextual characteristics. PCMH concordant care and each component were constructed as binary variables and child functional impairment was measured with the Columbia Impairment Scale. RESULTS: Thirty-one percent of children reported medical home concordant care; comprehensive (83%) and compassionate (82%) care were most prevalent, and the least common were accessible care (59%) and patient-centered care (60%). PCMH concordant care significantly increased nationwide between 2003 and 2012, but disparities remained based on child needs and sociodemographic characteristics. Multivariate regressions showed variation across medical home components. CONCLUSIONS: Despite increased parent perception of care that is concordant with medical home care over time, disparities remain among high-need CSHCNs. Future research may focus on better understanding how clinical settings tailor this care model, particularly on providing increased access and patient-centered care, to better serve children at the highest need.

Utilization and Adherence in Medical Homes: An Assessment of Rural-Urban Differences for People With Severe Mental Illness.

BACKGROUND: The complex nature of managing care for people with severe mental illness (SMI), including major depression, bipolar disorder, and schizophrenia, is a challenge for primary care practices, especially in rural areas. The team-based emphasis of medical homes may act as an important facilitator to help reduce observed rural-urban differences in care. OBJECTIVE: The objective of this study was to examine whether enrollment in medical homes improved care in rural versus urban settings for people with SMI. RESEARCH DESIGN: Secondary data analysis of North Carolina Medicaid claims from 2004-2007, using propensity score weights and generalized estimating equations to assess differences between urban, nonmetropolitan urban and rural areas. SUBJECTS: Medicaid-enrolled adults with diagnoses of major depressive disorder, bipolar disorder or schizophrenia. Medicare/Medicaid dual eligibles were excluded. MEASURES: We examined utilization measures of primary care use, specialty mental health use, inpatient hospitalizations, and emergency department use and medication adherence. RESULTS: Rural medical home enrollees generally had higher primary care use and medication adherence than rural nonmedical home enrollees. Rural medical home enrollees had fewer primary care visits than urban medical home enrollees, but both groups were similar on the other outcome measures. These findings varied somewhat by SMI diagnosis. CONCLUSIONS: Findings indicate that enrollment in medical homes among rural Medicaid beneficiaries holds the promise of reducing rural-urban differences in care. Both urban and rural medical homes may benefit from targeted resources to help close the remaining gaps and to improve the success of the medical home model in addressing the health care needs of people with SMI.

Medicaid Expansion as an Employment Incentive Program for People With Disabilities.

Before the Patient Protection and Affordable Care Act (ACA), many Americans with disabilities were locked into poverty to maintain eligibility for Medicaid coverage. US Medicaid expansion under the ACA allows individuals to qualify for coverage without first going through a disability determination process and declaring an inability to work to obtain Supplemental Security Income. Medicaid expansion coverage also allows for greater income and imposes no asset tests. In this article, we share updates to our previous work documenting greater employment among people with disabilities living in Medicaid expansion states. Over time (2013-2017), the trends in employment among individuals with disabilities living in Medicaid expansion states have become significant, indicating a slow but steady progression toward employment for this group post-ACA. In effect, Medicaid expansion coverage is acting as an employment incentive program for people with disabilities. These findings have broad policy implications in light of recent changes regarding imposition of work requirements for Medicaid programs.

Patient-Centered Values and Experiences with Emergency Department and Mental Health Crisis Care.

Little is known about what patients value in psychiatric crisis services or how they compare community-based services with those received in the emergency department. Three focus groups (n = 27) were held of participants who had received psychiatric crisis services in emergency departments or a community mental health center. Participants described care experiences and preferences. Focus groups were audio recorded, transcribed, and coded using a value-based lens. Themes included appreciation for feeling respected, basic comforts, and shared decision-making as foundations of quality care. Participants preferred the community mental health center. Research should address long-term outcomes to motivate change in psychiatric crisis care.

Effect of Medicaid Expansion on Workforce Participation for People With Disabilities.

OBJECTIVES: To use data from the Health Reform Monitoring Survey (HRMS) to examine differences in employment among community-living, working-age adults (aged 18-64 years) with disabilities who live in Medicaid expansion states and nonexpansion states. METHODS: Analyses used difference-in-differences to compare trends in pooled, cross-sectional estimates of employment by state expansion status for 2740 HRMS respondents reporting a disability, adjusting for individual and state characteristics. RESULTS: After the Affordable Care Act (ACA), respondents in expansion states were significantly more likely to be employed compared with those in nonexpansion states (38.0% vs 31.9%; P = .011). CONCLUSIONS: Prior to the ACA, many people with disabilities were required to live in poverty to maintain their Medicaid eligibility. With Medicaid expansion, they can now enter the workforce, increase earnings, and maintain coverage. Public Health Implications. Medicaid expansion may improve employment for people with disabilities.

Involving Latina/o parents in patient-centered outcomes research: Contributions to research study design, implementation and outcomes.

BACKGROUND: Comparative effectiveness research (CER) is supported by policymakers as a way to provide service providers and patients with evidence-based information to make better health-care decisions and ultimately improve services for patients. However, Latina/o patients are rarely involved as study advisors, and there is a lack of documentation on how their voices contribute to the research process when they are included as collaborators. OBJECTIVES: The purpose of this article was to contribute to the literature by presenting concrete contributions of Latina/o parent involvement to study design, implementation and outcomes in the context of a CER study called Padres Efectivos (Parent Activation). METHODS: Researchers facilitated a collaborative relationship with parents by establishing a mentor parent group. The contributions of parent involvement in the following stages of the research process are described: (i) proposal development, (ii) implementation of protocols, (iii) analysis plan and (iv) dissemination of results. RESULTS: Mentor parents' contributions helped tailor the content of the intervention to their needs during proposal, increased recruitment, validated the main outcome measure and added two important outcome measures, emphasized the importance of controlling for novice treatment status and developed innovative dissemination strategies. CONCLUSIONS: Mentor parents' guidance to the researchers has contributed to reaching recruitment goals, strengthened the study protocol, expanded findings, supported broad ownership of study implications and enriched the overall study data collection efforts. These findings can inform future research efforts seeking an active Latino parent collaboration and the timely incorporation of parent voices in each phase of the research process.

Parent-Reported Health Consequences and Relationship to Expenditures in Children with ADHD.

OBJECTIVES: (1) To describe parents' report of special needs for children with ADHD on the Children with Special Health Care Needs (CSHCN) Screener; and (2) to assess the association between responses to Screener items and annual mental health and total health expenditures per child. METHODS: In pooled 2002-2011 Medical Expenditure Panel Survey (MEPS) data, we identify children ages 4-17 years with ADHD. We use OLS and two-part regressions to model the relationship between CSHCN Screener items and mental health and total health expenditures. Based on these models we estimate adjusted, average total health expenditures for children with ADHD-both with and without a co-morbid mental health condition-and different combinations of endorsed Screener items. This research was conducted in accordance with prevailing ethical principles. RESULTS: There were 3883 observations on 2591 children with ADHD. Without a co-morbid mental health condition, average total expenditures per year from adjusted, model-based estimates were $865 for those meeting no Screener items, $2664 for those meeting only the medication item, $3595 for those meeting the medication and counseling items, and $4203 for those meeting the medication, counseling, and use of more health services items. Children with a co-morbid mental health condition had greater total health expenditures for each combination of Screener items. The associations between Screener items and mental health expenditures were similar, but with a slightly lower marginal effect of the medication item (p < 0.001 for all comparisons). CONCLUSIONS: Parents' responses on the CSHCN Screener are associated with meaningful variation in expenditures for children with ADHD. Though cross-sectional, this study suggests that the CSHCN Screener can be a useful categorization scheme for children with ADHD. It may be an efficient, standardized tool at the point of care for identifying children who need more resources and for targeting intensive interventions in the context of population health management.

Healthcare expenditures for autism during times of school transition: some vulnerable families fall behind.

This study explores the association between school transition age and healthcare expenditures for children with autism. The paper explores three questions: (1) What is the composition of services overall and paid out-of-pocket and does it differ at transition? (2) Do transition age children have higher total and out-of-pocket health care expenditures than other children with autism? (3) Does the effect of transition differ for vulnerable families who often experience problems accessing care? Pooled data from the Medical Expenditure Panel Survey 2000-2009 on children under 21 years of age with autism (n = 337) were used to describe expenditures for services by source of payment and estimate two-part models of total and out-of-pocket expenditures as a function of child transition age (5, 6, 11, 14) and other child and family characteristics. Median total annual expenditures for health care among children with autism are $2,400; median out-of-pocket expenditures are $390. The majority of total expenditures are devoted to outpatient medical services; nearly half of family out-of-pocket spending is devoted to prescription medications. When children are transition age, a larger proportion of both overall and out-of-pocket expenditures go toward ambulatory therapy, while a smaller proportion of out-of-pocket expenditures are devoted to prescription medications compared to children of other ages. Transition age children from vulnerable families experience a drop in expenditures that families with more resources fill through out-of-pocket spending. Findings raise questions about the dimensions of care for children with autism. Schools may be better positioned than health insurance to foster continuity of care.

Behavioral Health Services Outcomes That Matter Most to Caregivers of Children, Youth, and Young Adults with Mental Health Needs.

This project documents the service outcomes that caregivers value most. A diverse group of caregivers, representing six regions of the United States, participated in two rounds of virtual one-hour focus groups. In round 1, participants identified what they hoped to gain from using behavioral health services for themselves, their families, and their child and discussed what made services a positive experience for them. They then reported their top-three most-hoped-for outcomes. In round 2, groups validated and refined summary findings from round 1. Caregivers prioritized service quality outcomes, primarily. They expressed a desire for an accessible, respectful, and supportive treatment environment, underpinned by well-trained and culturally responsive professionals. Caregivers also desire seamless cross-sector provider collaboration and care transitions, which integrate the insights and preferences of families and children themselves to craft a customized care plan. Priority outcomes not related to service quality included hoping to gain increased knowledge, resources, and tools and techniques to support the mental health needs of their children, to see their children improve their daily functioning and for their child develop more effective interpersonal communication skills. Caregivers also reported hoping to experience less stigma related to the mental health needs of their children and to achieve personal fulfillment for themselves and their children. Research, policies, and mental health services should prioritize and be designed to address the outcomes that matter to youth and families.