Antipsychotic Treatment for Youth in Foster Care: Perspectives on Improving Youths’ Experiences in Providing Informed Consent

Abstract

The disproportionate prescribing of high-risk antipsychotic medication for youth in foster care is a significant social problem across the US. This qualitative study examined stakeholder perceptions of prescribing, being prescribed, or overseeing prescriptions for youth in foster care. Interviews and focus groups were conducted with clinicians, child welfare caseworkers, foster caregivers, and foster care alumni. The overall aim was to systematically explore their understanding of and experiences with the Informed Consent to treatment and shared decision-making processes related to prescribing and monitoring of antipsychotic medications for youth in foster care. Participants were recruited from around the country; data collection using structured interview or focus group guides occurred via telephone and web-based formats. This study is rooted in the lived experiences of stakeholders in addressing recent federal legislative mandates and guidelines for the oversight and coordination of mental health service delivery to youth in foster care. Numerous themes emerged that provide context in employing a team-based approach for youth engaged with multiple child-serving systems. Eight themes emerged that illustrate the necessary components of successfully implementing Informed Consent and shared decision-making as well as the barriers and concerns germane to this process. The findings address the nuanced complexity of and tensions with the trade-offs inherent in delivering mental health care to youth involved in foster care.

Abundant research from the past two decades has documented alarmingly high rates of prescriptions for high-risk antipsychotic medication for children and youth in the U.S. child welfare system (hereafter, “foster care”) (Crystal et al., 2016; dosReis et al., 2011; dosReis et al., 2001; McMillen et al., 2007; Olfson et al., 2015; Rubin et al., 2012; Stambaugh et al., 2012). These medications, with their incontrovertible risk profiles, are prescribed to youth in foster care at 2 to 4.5 times higher rates than children solely insured by Medicaid as well as youth in the general population (Barnett et al., 2019; Crystal et al., 2016; Howie et al., 2014; Leslie, Raghavan, Zhang, & Aarons, 2010; Matone et al., 2012; Safer, Zito, dosReis, 2003; Stambaugh et al., 2012; US Government Accountability Office, 2012; Zito et al., 2008). In response, between 2008–2012, a number of federal efforts emerged that require states’ child welfare agencies to develop plans for oversight regarding the prescription of antipsychotic medications for youth in foster care.

During this same time period, federal child welfare policies and best practice approaches have promoted case practice measures that are informed by a shared decision-making philosophy (Berrick, 2017; Pecora et al., 2019; Toros, DiNitto, & Tiko, 2018). This youth-centered, shared decision-making approach extends beyond decisions pertinent to case-related matters to encompass all health and mental health related interactions. In theory, critical components of this philosophy include instilling genuine youth engagement and optimizing youth clients’ right to self-determination to the fullest extent possible. As a practical application, though, the shared decision-making philosophy is quite complex to implement in clinical practice settings; clinicians who treat youth from foster care may be tasked with engaging stakeholders from child-serving systems—child welfare system personnel, foster caregivers--in acquiring Informed Consent to treatment and in developing a treatment plan. Moreover, engaging foster caregivers is not without its own challenges, and some may be more inclined toward productive participation than others (Jolles & Wells, 2016). It may also mean asking caregivers to assume a role they have previously never undertaken. The complexity of the team-based approach is relatively new for youth involved in the foster care system and the nature of its implementation in clinical encounters requires particular customization because the state has legal responsibility for the well-being of children. Therefore, this study examines the experiences and perspectives of four key stakeholder groups in how they understand the Informed Consent and shared decision-making processes.

Policy Guidelines, Intervention, and Oversight

Since the 1970s, policy and programmatic efforts have been made to provide a comprehensive and integrative approach across child-serving systems to address the complexity of children’s mental health issues (Institute of Medicine and National Research Council, 2014; Stroul, Blau, & Friedman, 2010). The Children’s System of Care concept is referred to as both an approach and a philosophy in that it exemplifies a cross-system process for drawing together multiple child-serving systems, including but not limited to mental health services, child welfare programs, and juvenile justice systems in providing integrative care to children from one or more system.

In the 2000s, researchers and advocates raised concerns about the mental health treatment of children and youth in foster care. In particular, concerns about the rates of antipsychotic medication prescribing was highlighted. In part, due to the disproportionately high rates of antipsychotic medication prescriptions for youth in foster care (Crystal et al., 2016; dosReis et al., 2001; Howie et al., 2014; Leslie, Raghavan, Zhang, & Aarons, 2010; Zito et al., 2008), the federal government initiated several efforts to address this problem. Beginning with the enactment of the Fostering Connections to Success and Increasing Adoptions Act of 2008 (PL 110–351), state child welfare agencies are mandated to initiate or improve oversight and coordination of mental health services to youth in foster care (Leslie et al., 2011; Mackie, 2011). Subsequently, the Child and Family Services Improvement and Innovation Act of 2011 (PL 112–34) (Mackie et al., 2017) mandated state child welfare systems to develop plans for the oversight and monitoring of antipsychotic medication prescribing.

These legislative actions led many state child welfare agencies to revisit their existing approach to the oversight of patient-centered and evidence-based psychotropic medication prescribing. In 2012 the Children’s Bureau issued an Information Memorandum (12-03) that required states’ Medicaid, mental health, and child welfare systems work collaboratively to coordinate care for children in the child welfare system. The guidelines addressed topics that included comprehensive and coordinated assessment, Informed Consent to treatment and shared decision-making, medication monitoring, retrospective review, prior authorization, and consultation services (Barnett et al., 2016; Fernandes-Alcantara, Caldwell, & Stoltzfus, 2015; Lohr et al., 2018; Longhofer, Floersch, & Okpych, 2011; Mackie et al., 2017). Taken together, these policy mandates, cross-system approaches, and professional guidelines direct states to ensure the safe and judicious prescribing, use, and monitoring of psychotropic and antipsychotic medications for youth in foster care.

Defining Informed Consent to Treatment & Shared Decision-Making

Informed Consent to treatment and shared decision-making are approaches that are conceptually linked and overlapping, but also essentially distinct from one another. Youth in foster care are in a vulnerable position when interacting with medical professionals. Whereas youth in the general population typically have consistent caregivers to participate in and guide clinical interactions with medical professionals, youth in foster care often lack a consistent caregiver or trusted adult for this process (Fernandes-Alcantara, Caldwell, & Stoltzfus, 2015; Hurlburt, Leslie, & Landsverk, 2004; Information Memorandum, 2012). While there may be numerous points in clinical interactions in which youth or other stakeholders are asked to consent to something, the recent policy efforts focused specifically on consenting to mental health treatment. Relatedly, shared decision-making refers to interactions in which medical providers and the youth and families whom they serve come together as collaborators in determining the course of care (Melton, 2010; Murphy et al., 2015). This team-based model is especially relevant to youth in foster care who receive mental health care, including antipsychotic medication, so that treatment planning is coordinated among youth, their caregivers, caseworkers, doctors, and other relevant adults involved in their lives. The intention is that each party will actively and openly discuss all treatment options and decisions and come together to decide on the best course of action for youth. Thus, Informed Consent to treatment may be viewed as one component of the shared decision-making process for health and mental health matters, but is not synonymous with it (Bender Simmons, 2017).

Understanding a Team-based Approach

State employees in child welfare and other youth-serving systems confront a series of trade-offs in ensuring access, safety, and quality of psychotropic/antipsychotic medication use. For instance, how do stakeholders balance competing priorities of timely access to medical care versus delaying treatment until all parties have weighed in on the treatment decisions? Moreover, as indicated in the 2012 Children’s Bureau Information Memorandum as well as in numerous research studies (Barnett et al., 2016a; Barnett, Clearly, & Donnelly, 2017; Bertram, 2018; Longhofer, Floersch, & Okpych, 2011; Toros, DiNitto, & Tiko, 2018), youth in foster care have few rights and are often unaware of the rights they do have. As such, professionals who interact with youth in foster care have an obligation to assist foster youth in understanding and exercising their rights. This is especially true in their medical and mental health treatment in which shared decision-making and Informed Consent serve an important role in allowing foster youth to gain agency over their lives. Though there is little research specifically about youths’ understanding of the new federal policy guidelines, relatively recent research about how youth in foster care experience interactions with medical professionals regarding mental health decisions supports the assertion that youth are not adequately informed about treatment side effects, monitoring of dosages, and how to discuss treatment options and planning with their medical providers (Barnett et al., 2019; Bertram, 2018; Floersch et al., 2009; Longhofer et al., 2011; Murphy et al., 2015; Toros, DiNitto, & Tiko, 2018).

Recent research reveals some of the complexity that discrete stakeholder groups face in light of the new federal guidelines. In one of the first studies to examine foster caregivers’ perceptions of shared decision-making since the enactment of the federal policies and guidelines, Barnett and colleagues (2016b) found that foster caregivers are often excluded from mental health-related decision-making processes for youth whom they care for. This exclusion – whether intentional or not—has left caregivers insufficiently informed about all aspects of prescriptions for antipsychotic medications, from side effects to monitoring and medication adherence. However, reversing exclusionary practices has been challenging, particularly for child welfare caseworkers (Barnett et al., 2017; Jolles & Wells, 2017), who are now encumbered with a slew of new procedures and protocols for engaging and maintaining contact with foster caregivers in addition to the already consuming demands of child welfare casework. Ultimately, including caregivers as members of the team may improve partnerships across a number of child welfare and mental health system shared activities.

The Present Study

This study builds on previous research examining stakeholder perceptions of shared decision-making and Informed Consent to treatment in mental health treatment for youth in foster care. Since the enactment of legislation and policy mandates (2008—2012) to address the disproportionate prescribing of AP medications for youth in foster care, relatively few studies have examined stakeholders’ perceptions of patient-centered care regarding these clinical encounters (Barnett et al., 2019). In this project, we examined experiences of foster care alumni in receiving mental health services from their vantage point, along with insights from three other key stakeholder actors in the mental health treatment process: clinicians who prescribe medication (“clinicians”), child welfare caseworkers (“caseworkers”), and child welfare caregivers (“caregivers”).

In part, this study explored the common emergent themes that help illuminate important considerations, from multiple perspectives, pertaining to Informed Consent to treatment for youth in foster care and its relationship to the shared decision-making philosophy. The shared decision-making model is strongly encouraged by the regulatory oversight mechanisms related to the prescription of antipsychotic medications for youth in foster care. More specifically, we analyzed qualitative data to better understand how each stakeholder group understands and enacts their roles with regard to shared decision-making and Informed Consent. The central research aim was to explore how stakeholders perceived the Informed Consent and shared decision-making processes. We further explored how they perceived and managed the trade-offs associated with using a team-based approach for prescribing antipsychotic medications to youth in foster care.

Methods

Overview

This study is a component of a broader research project, funded by Patient Centered Outcomes Research Institute (PCORI) aimed at understanding the comparative effectiveness of oversight policy mechanisms pertaining to the prescribing of antipsychotic and psychotropic medication for children and youth in foster care in four states (Ohio, Texas, Washington, and Wisconsin). The broader project used a mixed-methods approach, encompassing both primary data collection from several stakeholder groups and secondary data analysis of Medicaid claims data. All aspects of the project were guided by a Stakeholder Advisory Board specifically developed for this project. The project was approved by Rutgers University’s Institutional Review Board. More details about the scope and results of this project are available at https://www.pcori.org/research-results/2015/comparing-effects-state-policies-monitor-mental-health-medicines-given.

Procedures

For this specific project, we conducted qualitative data collection with four key stakeholder groups who are integrally involved in study states’ psychotropic medication oversight mechanisms. Stakeholder groups included clinicians, alumni from foster care, foster caregivers, and child welfare caseworkers. The overarching purpose was to explore the experiences, perspectives, and priorities of individuals with lived experience in prescribing or being prescribed antipsychotic medication. Three of the stakeholder groups—clinicians; caregiver; caseworkers—were recruited from the four states in the broader PCORI study¹ (Ohio, Texas, Washington, Wisconsin). The alumni were recruited through nationally-based advocacy groups and therefore reflected a broader geographic region and not just the four study states. All participants completed informed consent procedures (to the study) that were approved by Rutgers University’s Institutional Review Board. With the exception of the caseworkers, all stakeholder respondents received an electronic gift card following the conclusion of their participation in the project (clinicians received $150; caregivers received $75; alumni received $50). According to states’ regulations, caseworkers are prohibited from receiving compensation for participation in research projects. However, the project made donations to local child welfare offices, identified by case workers, to support holiday purchases for children in care.

For the clinicians (N = 32), participants were individually interviewed by phone using a semi-structured interview guide developed by the study team (please see Supplemental materials for sample questions). They were recruited into the project with assistance from state Medicaid representatives. Clinicians were identified using state Medicaid administrative data linked to children in foster care and lists of active prescribers of antipsychotic medications were forwarded to the team. Within each state’s list, the study team prioritized those who had prescribed a substantial number of antipsychotic medications in the most recent 6-month period so that we could ensure potential participants had adequate exposure to the monitoring process used with youth in foster care in the study states. This generally equated to having prescribed antipsychotic medication for at least 35 different youth from the state’s child welfare system during the recent 6-motnh period. In addition, standardized structured questions were asked during the intake recruitment call to get a better sense of their experience. For example, we asked them about their experience with prescribing AP medications to youth in foster care, the most recent time they had done this, and the composition of their caseload.

For the alumni (N = 8 focus groups), we conducted web-based focus groups, using a Deliberative Discussion format (Plamondon et al., 2016; Rothwell, Anderson, & Botkin, 2016) developed by the study team. The focus group approach was structured around a fictional vignette — developed by the study team, in collaboration with the Stakeholder Advisory Board -- about a teenager being prescribed psychotropic medication while in foster care. Much of the vignette centers around the relationship between the doctor and the youth (Jessa), with a specific focus on Jessa’s symptoms, how to talk about antipsychotic medications, and about monitoring her prescription of medicine (for a copy of the vignette, please see the supplemental materials). It was intentionally designed to reflect an Informed Consent to treatment scenario, and the trade-offs that might exist for various team members. This Deliberative Discussion format allowed for rich and dynamic discussion while mitigating the risk of retraumatization; participants were able to relate the vignette or elements of it to their own lived experience but were not directly asked to recount their personal experiences.

All alumni participants were required to have previous experience being prescribed at least one antipsychotic medication while they were involved in the foster care system, be between the ages of 18 and 28 years (at the time of the study), and resided in out-of-home foster care. Age restrictions were set in order to correspond with recent shifts in state policies related to oversight mechanisms of prescribing antipsychotic medication, and to limit the recall period. The OOH care placement must have been for at least 6-months and must have included a non-kinship care setting. Youth discussed with the intake specialist (i.e., a trained specialist from YouthMOVE National) about the AP medications they were prescribed while in out of home care. Relatedly, due to IRB constraints (i.e., not being able to conduct assent to the study in person, nor contact the youths’ caregivers for study consent) we were unable to collect data from any youth under age 18. The alumni were recruited in partnership with two national youth advocacy organizations, YouthMOVE National and Foster Care Alumni of America who represent thousands of young adult members interested in improving systems of health care for youth and young adults. The organizations advertised the project to their national networks of members and affiliates, and, given the sensitive nature of the project, they conducted initial screenings of potential participants. Interested individuals meeting inclusion criteria were referred to the study.

The caregivers (N = 20) and caseworkers (N = 26) were also recruited with the assistance of the National Foster Parent Association networks and state level officials who were knowledgeable about the project. Both caseworkers and caregivers were required to have recent experience (within the last year) with caring for youth who had been prescribed at least one antipsychotic medication. The inclusion criteria for being a caregiver participant includes having provided care for non-relative children, though they may also have had experience as a provider to relative children too. Caregivers who solely worked in residential group homes were not included since the type of care provided in facilities is potentially different from being a caregiver in a home environment. The caregivers were individually interviewed using a semi-structured interview guide and also utilizing the case vignette developed for the Deliberative Discussion focus groups. The caseworkers were individually interviewed with a semi-structured interview guide. For inclusion in the project, caseworkers needed to have experience working with adolescent clients as a case practice worker. Investigative case workers were not included I the project since they may not have had sufficient case practice exposure with youth clients who were receiving mental health treatment Both caseworkers and caregivers were asked structured questions about their background and experience (e.g., length of time in their role; percentage of caseload/children they care for with behavioral health challenges and who have taken AP medications; and types of AP medications they had experience with regarding the children they cared for).

Data Collection

Across all stakeholder groups except the alumni, the interviews were conducted by phone. In order to assess perceptions relative to one another, comparable domains and wording were used in all interview and focus group guides. We also developed an information sheet that clearly outlined the policy mechanisms, concepts, and terms that we were focusing on in the interview or focus group; this was distributed to each participant in advance of data collection, and reviewed prior to commencing the interview or focus group. This was done so that we could ensure that all participants were operating from the same premise regarding the study’s intentions. The interview guide was collaboratively developed and included close and open-ended questions. Interview domains included: stakeholder experiences with the prescription of psychotropic medication to youth in foster care; understanding of the medical and mental health systems; communication and collaboration within and outside of the child welfare system; perceived state-specific strengths and challenges; and ideas for process improvement.

All interviews and focus groups were conducted by either the principal investigator or a master’s level research associate; each interview included a note-taker. Interviews were audio recorded and transcribed verbatim by an IRB-approved professional transcriptionist. A member of the research team reviewed each transcript to remove personal identifiers and insert notes from the note-taker into the appropriate sections of each transcript. The focus groups with Alumni last about 90 minutes each, while the individual interviews with other stakeholders lasted about 60 minutes each. The focus group composition was based on availability for the time slots of the groups, taking time zone differences into account. Each group consisted of between three to four Alumni participants.

Demographics of Participants

In Table 1, we provide an overview of the demographic characteristics of the study participants. For the alumni, just over half were female (60%) and about a third identified as African-American (37%), white (37%), and Latinx (37%). The range of time spent in foster care (or out-of-home care) ranged from 11 months to 13 years. With respect to the length of time they had been taking AP medications (while in foster care) ranged from three months to six years. Caseworker respondents were predominantly female (85%), white (69%), and educated with Masters (39%) and Bachelors (39%) degrees. Among clinicians just under half (47%) were female, more than three-quarters white (78%), and the majority trained as Medical Doctors (75%). Regarding the caregiver respondents, all were all female (100%), and over two-thirds were white (65%); just over a quarter reported earning Masters (25%) and Bachelor (30%) degrees.

Table 1.

Sample Characteristics by Stakeholder Group

	Foster care alumni (n=25)	Case-worker(n=26)	Clinician (n=32)	Caregiver (n=20)
Gender
Female, no. (%)	15 (60)	22 (85)	15 (47)	20 (100)
Race
African-American, no. (%)	9 (38)	6 (23)	3 (9)	7 (35)
White, no. (%)	9 (38)	18 (69)	25 (78)	13 (65)
Multi-racial, no. (%)	3 (13)	0 (0)	0 (0)	0 (0)
Other, no. (%)	3 (11)	1 (4)	4 (13)	0 (0)
Ethnicity
Hispanic, no. (%)	9 (38)	1 (4)	1 (3)	0 (0)
Education
Master’s degree	N/A	12 (46)	0	5 (25)
Medical Doctor	N/A	0	24 (75)	0
Nursing	N/A	0	8 (25)	0
PhD	N/A	1 (4)	0	0 (0)
Pharmacist	N/A	0	0	0
Juris Doctorate	N/A	0	0	0 (0)
Bachelor Degree	N/A	10 (39)	0	6 (30)
Other	N/A	3 (12)	0	9 (45)

In addition, clinicians, caseworkers, and caregivers were asked structured questions about their background experience working with youth in foster care who had been prescribed AP medications. Two-thirds of the clinicians had over eight years of experience in their current position and saw patients from a variety of settings and environments, not just those from foster care (data not shown). Similarly, caseworkers also had considerable experience working with children and youth on their caseloads who had mental health difficulties (over two-thirds of caseworkers indicated that 75% or more of the children on their caseloads had behavioral health difficulties, while 50% reported between 50 and 75% of their caseloads contained youth who were prescribed AP medications). Finally, three-quarters of caregivers had more than eight years of experience in their current roles, and over there-quarters of caregivers have cared for children from foster care with behavioral health difficulties “a lot” or “all of the time.”

Data Analysis

Data analysis included descriptive summaries of stakeholders’ demographic and background information obtained from surveys. Interview and focus group transcripts were imported into Dedoose software (SocioCultural Research Consultants, 2016) and analyzed by a trained, multidisciplinary research team. A codebook was created to organize the qualitative data and support analysis of the transcripts. To develop the codebook, a sample of complete transcripts from each stakeholder group was reviewed by members of the team. Over a series of meetings, team members discussed ideas about categories of information to capture through the coding process. These ideas consisted of both an a priori set of codes and also emergent codes, consistent with a directed content analysis approach (Hsieh & Shannon, 2005). A draft codebook was created based on review of these initial transcripts. Two members of the research team then independently tested the codebook with a second sample of transcript excerpts and the entire team met to discuss discrepancies. This process continued with each stakeholder group until the team felt the codebooks were inclusive and appropriately applied. In addition, interrater reliability was measured for a subset of stakeholder interview transcripts, and scores ranged from .74 to .89 across all stakeholder groups and analysts. After the team reached consensus on codebook definitions and applications, the remaining interviews were coded. Team members met regularly to discuss their coding process and resolve any questions.

Thematic analysis was completed by observing code application within and across groups. The research team met to discuss themes and sensitizing concepts that emerged across the groups as they pertained to the federal oversight mechanism of Informed Consent and the concept of shared decision-making.

Results

Each of the stakeholder groups experienced the Informed Consent to treatment (a legal requirement of any clinical encounter) process differently, as might be expected from their differing roles in the process and differing knowledge base about antipsychotic medications. There were also themes that were common across groups. Our analysis resulted in eight themes: (1) Communication; (2) Comprehension; (3) Youth Involvement; (4) Youth Agency; (5) Responsibility and stakeholder roles; (6) Mandated Authority; (7) Working together as an inclusive team; and (8) Delays. These themes illustrate necessary components to successfully implementing Informed Consent and shared decision-making, as perceived and experienced by the stakeholder groups. They also touch on concerns and barriers to the process of shared decision-making and Informed Consent. Below, we discuss some of the distinctive perspectives of different stakeholder groups.

Communication:

Communication was a central tenet of the Informed Consent and shared decision-making processes in caregiver, caseworker and clinician groups. Caregivers expressed that not just communicating, but how things are communicated, mattered greatly for a successful process.

“So if the doctor’s approach is ‘I’m the expert this is what your child needs,’ I think families can be intimidated and turned off by that. But when doctors are presenting that this is -’here’s what I know about this medication, both positive and negative, and you and I together, mom, and you and I together, young lady, are going to make this decision.’ It’s not this controlling decision-making approach by a doctor but rather, um, I might be the expert on this medicine as the doctor and you are the expert on your child. Together we are going to partner in making these decisions.”

(Caregiver)

Caseworkers also mentioned the importance of two-way communication and how that had the potential to address the power dynamics at play within the team.

“Some of the psychiatrists are dismissive of the opinions of the youth, so it just depends on the psychiatrist and it depends on the child that they’re prescribing for.”

(Caseworker)

While caseworkers acknowledged the challenges of good communication, they also often took responsibility for communication and transparency among actors in the shared decision-making process. Caseworkers saw themselves as the intermediary of all parties involved and mentioned their job as the “middle-man”, sharing, gathering and communicating information for the process appropriately.

“I don’t always attend all the appointments, but I’m the in-between person for the child and the parent getting the consent signed.”

(Caseworker)

Clinicians mentioned that communication with the various parties was vital to their success when treating youth in foster care. Clinicians rely on the various stakeholders for information about the child and the case, and if that is communicated well and in a timely manner, then clinicians are better equipped to determine a treatment plan. Clinicians acknowledged their responsibility to communicate clearly as part of the treatment team, but also felt strongly that communication should occur in person, during the office visit. They asserted this would ensure that everyone was on the same page, as well as prevent delays in treatment due to difficulties reaching other members of the team by telephone or other means.

“Well it’s harder because you have to jump through the extra hoops of getting consent from someone who’s not there in the office when you see the patient and not there to hear the review of why you are making a decision.”

(Clinician)

Caregivers believed some of the difficulties related to inferior communication arose from the fact that stakeholders were often in different professional spheres and operating within different systems.

“So, um, most of the time people in the medical profession are familiar with how to access services and do things within that setting. But that doesn’t mean that they know how to access services within children administration to get the, um, approvals that they need. So if they were to call the social workers phone number that foster parent would provide for them, they would, um, - the social worker is probably not going to be there sitting there at their desk to answer that call. So doctor’s office would leave a message and then it becomes a game of phone tag. And every time you have to leave a message it takes another 24 hours or another 24 hours to be able to get that information and you just are just playing phone tag in the meantime. Client’s not getting the services.”

(Caregiver)

The theme of communication encompasses many critical elements necessary for mental health treatment decisions to unfold. Stakeholders highlighted the complexity of the diverse professional roles in serving youth in foster care as well as the challenges associated with perceptions of power differentials with some of these roles. Overall, communication within and across systems is a valued component of Informed Consent to treatment and shared decision-making, yet the reality of successfully implementing it is hard to achieve.

Comprehension:

Comprehension was a theme across all stakeholder groups, though sometimes the emphasis was specifically on youth comprehension in the clinical encounter, and other times it included all team members comprehending the treatment plan prior to consenting to it.

Alumni focused strongly on the importance of youth comprehension during the shared decision-making process. Alumni felt it was vital for youth to understand what was happening, the medications being prescribed, why they were being prescribed, and also what the potential side effects of the medication were.

“I think that there just needs to be way more emphasis on explaining like even if in the interim before any decisions are made that would give youth in foster care more control over medication and prescription and things like that but even before that I think there needs to be emphasis on explaining what the medication is and what it does and what it’s for.”

(Alumnus)

Caregivers agreed that youth comprehension should be a priority and identified the danger in ignoring that part of the shared decision-making process.

“If you’re fighting with somebody to take the meds and they don’t grasp why they’re taking this and understand what its purpose is and agree to its purpose they’re going to hide. They’re gonna not take meds. They’re gonna spit them out. They’re gonna lie about it. They’re never gonna see the value in it and then they’re gonna turnaround as soon as they’re old enough and/or not pushed for it they’re gonna go off them.”

(Caregiver)

Clinicians said it was important to educate youth about medications, side effects, monitoring, and also the potential consequences of refusal.

“I want you to know how you need to take it correctly so that it works the best for you. We don’t want to take it one day and then not for seven days and take it for two days. Um, so that they know how it’s going to work in their body and they know how to take it appropriately.”

(Clinician)

For clinicians, youth comprehension was important in terms of communicating with them around the treatment plans and goals and for understanding the course of treatment and how to monitor side effects. However, what was most key for clinicians, was the process of engagement of mandated authorities. It was seen as essential that the individuals and organizations who are responsible for authorizing treatment make truly “informed” decisions. Clinicians mentioned youth comprehension much more under the auspices of treatment planning and adherence, than Informed Consent. With regard to the Informed Consent process, it was more important to clinicians that the mandated consenting authorities comprehend the treatment plan, than the youth themselves. This was part of the reason clinicians were uncomfortable with the mandated authority for Informed Consent not being present at the office visit. Physical presence was viewed as key to holding knowledgeable interactions with the physicians and other team members; the comprehension level of the mandated authority is the vital link in this process.

“So I sometimes get frustrated with [child welfare case workers] if they want to deny, not let me prescribe the medicine, they need to come and have appointments with me. There’s just no better way to communicate.”

(Clinician)

Youth involvement:

While Alumni mentioned communication during their discussion of Informed Consent, it was mostly with regard to eliciting their involvement in the process rather than communication across stakeholder groups.

“I mean just having the youth involvement is big. Like if you are considering putting them on medication discussing the side effects and everything with them, like hey this is what this is, this is what could happen and just having them informed… Having been on a lot of medications and being forced to take a lot of medications without being informed I would much rather prefer being informed about what the heck is expected side effects.”

(Alumnus)

Alumni emphasized the importance of soliciting youth involvement during the Informed Consent and shared decision-making processes. Other stakeholder groups mentioned the importance of this practice to varying degrees. It was noted by caregivers and caseworkers that youth should be involved in Informed Consent and shared decision-making; however, their participation was not emphasized as a necessary component of success.

“the youth that I said I worked with, well, they have the opportunity to be involved. Some are more involved than others.”

(Caseworker)

Generally, caseworkers believed it was within the scope of their duty to involve youth, but did not emphasize youth input as much as alumni and clinicians did. For clinicians and alumni, youth involvement could not be overlooked.

“The issue is that no one discussed with [the teenager in the vignette] - this is what I have a problem with. No one discussed with her to see if this medication would even be a good fit.”

(Alumnus)

“Well first we kind of have to agree on what they need help with. If they totally disagree that they have an anger problem we’re at a standstill. I have to get them to agree on something they would like for me to help them with.”

(Clinician)

Clinicians felt it was a part of their job to involve youth in the process of Informed Consent and shared decision-making by building trust, clearly communicating risks and benefits and educating youth on medications and treatment options.

“Well I think the first thing I want to say is that and this is what I would say to a teenager is, you know, it’s not my job to force medication on anybody, not at all. My job is to make sure you have all the information that you need to make to help me make the best decision for your health and for your safety whatever else is the presenting issue.”

(Clinician)

There was a practical reason for youth involvement, according to clinicians. Youth would ultimately be responsible for their own medication monitoring and treatment, especially if they move from their current foster home, are reunified with their biological parents, or age out of the child welfare system. That is, clinicians made an important observation in that youth themselves were often the only point of continuity for their medical and mental health care. Therefore, another incentive to including them in their own treatment decisions is that it helps cultivate a sustained interest in their immediate and long-term treatment goals and planning. Given the inconsistencies in the lives of foster youth, they may be the only source of knowledge about their own medical needs; therefore, keeping them informed was seen as a priority.

“So for me it’s an ongoing always, always, always, as much as they want to and can participate in this decision how can we help you make the decision. Having done this for 45 years all my kids grow up and they get older. So one of the tasks long term is that if this youngster looks like they’re gonna be on medication for a while, sooner or later it’s gonna be their call. Sooner or later it’s gonna be their call because they’re too big for anybody to make them take medication or they’re now 18 and so it’s their call or whatever. So if they can understand why they’re taking medication, what the risks and benefits are, so I’m gonna give that point I’m gonna refuse or now I’m 18 I don’t need this anymore or whatever level they’re thinking then they have as much as information as they can have to say this is how I got here and this is why I’m here.”

(Clinician)

Youth agency:

All stakeholder groups discussed youth agency in the Informed Consent and shared decision-making processes. Different from the themes of “youth involvement” or “comprehension,” outlined previously, this theme deals with youths’ decision-making authority in the context of the team. Rather than how the other stakeholders (i.e. clinicians, caseworkers, and caregivers) communicate or explain things to youth, this theme is about the value and weight placed on youth agency in the communication processes.

Some conversations among stakeholder groups, specifically alumni and caregivers, focused on whether or not youth should ideally hold the ultimate decision-making power for consenting to treatment. While the reality is that federal and state guidelines do not uniformly provide minors with this level of authority, we did ask participants in our study to offer their opinions about whether youth in foster care should possess this decision-making capacity. We found that there was no consensus about this matter. Rather, these conversations generally ended with a conclusion that having multiple people involved in the decision-making is best, while being sure to account for youths’ input in their care.

“So I personally think that the youth should work in conjunction with the doctor, kind of like a psychiatrist… So just having like a full disclosure about everything about it, um, and the doctors, from when I was in care, were under pressure to push certain kinds of meds. So I actually kind of retract what I say about having, um, about the doctor having the final decision, I think it really should be with the young person and the doctor if the caregiver can’t even be part of the conversion.”

(Alumnus)

“I would like for all the pieces to listen to the child. Listen to the family. Really listen to them. Not just hear what you want to hear, you know, but just really be open and listen.”

(Caregiver)

Stakeholders commonly weighted youth agency in the decision-making process based upon age and maturity level. Caseworkers, alumni and clinicians discussed that older youth or those who are more mature may have more of a significant contribution in their treatment plans than younger children.

“if they’re under the age of 18 they have very little rights in making those decisions. However, in their teenage years they have more influence and can have those conversations with their medical provider about whether a medication is working or not. And teens often refuse to take their medication.”

(Caseworker)

“because [the teenager in the vignette] is, in my opinion, a little too young to understand the intricacies of medication and if no one else is available in that particular situation, I think that the medical professional should be the one that decided.”

(Alumnus)

“Everyone deserves the explanation. It’s just that younger kids may not have quite the ability or need for assent the same way an older kid might.”

(Clinician)

Of note, the theme of youth agency regularly arose in relation to the right to refuse medication. Alumni strongly believed that it was youths’ unequivocal right to refuse medication in the shared decision-making process pertaining to treatment decisions.

“I would think [the teenager in the vignette] right is to say ‘no more.’ In all honesty, as much as that’s contradictory to what I just argued yes earlier, I would think it’s a basic human right to be able to say no. You know what I mean? I mean this is a sticky situation, I feel like she’s a beach ball, she’s stuck in between all these different people and, um, so sometimes you only have one choice which is to say I’m done with this, you know.”

(Alumnus)

Alumni were clear that if youth were not persuaded of the value of taking their medication as prescribed, they wouldn’t take it; therefore, soliciting their input prior to prescribing it made the most sense. Clinicians and caseworkers discussed a similar sentiment.

“if she’s not going to take the medication, she’s not going to take it. So, it’s better if they just find something that works better for her, or, you know, put something else in place.”

(Alumnus)

“I mean there’s not necessarily an age, but if kids are refusing they’re not forced, but, uh, so, you know that’s always a difficult situation you know if they really don’t wanna take it they’re not gonna be forced to take it, so. The conversation is had with the kids you know to make sure they understand why it’s recommended and to make them feel like their voice is heard as well, so.”

(Caseworker)

However, clinicians also discussed how it was part of their role to “convince” youth to take medication, despite the youth’s reticence. Clinicians explain to youth the consequences of medication refusal and how that could affect their lives during the shared decision-making process.

“One of the things that I said, ‘it must stink that you had to be four different schools this year, would you like to be able to stay in school longer? Yeah, yeah. Can you, um,’ - I try to sell it enough positive note that you are going to have more friends because many of the kids don’t have many friends, they don’t go to parties, um, they are not in sports.”

(Clinician)

Responsibility and stakeholder roles:

Caregivers and caseworkers both mentioned the importance of having those who know the child best centrally involved in decision-making. Caregivers stated that they saw the children every day and were most familiar with their behaviors and cases. They also thought that they had unique perspective, as their time and attention was not split between many cases or patients, as it often was for caseworkers or clinicians.

“Right and recognizing that the parent and the young lady know themselves the best versus the doctor knowing them the best and making decisions for a child he might see for 20 minutes every other month. It puts value on their experience and allows them to then advocate for themselves.”

(Caregiver)

Because they felt they knew the child best, caregivers had a sense that they were an important, informed actor in the decision-making process. Caseworkers expressed a similar sentiment, as they identified that the crux of their job was to have the child’s best interests at heart. They took great responsibility for advocating for and protecting foster youth during the Informed Consent to treatment process.

“I make sure that I’m at every psychiatric appointment um for the kids that I have in custody because that way, I mean, because I know the child the best and so I make sure that I communicate with the child about the medications and I make sure that I’m communicating whatever I’m observing to the doctor and then also if there are any concerns the child has I make sure that those concerns are relayed to the doctor as well.”

(Caseworker)

Mandated authority:

The concept of mandated authority is an important policy mechanism in the delivery of mental health treatment to youth in foster care. Members of all stakeholder groups felt that they could meaningfully comment on the concept of a unilateral, mandated authority for providing Informed Consent. Rather than who the mandated authority should be, much of the discussion within this theme focused on how a mandated authority impacted the Informed Consent to treatment process more broadly and how involved or absent they were.

“When they question, ‘why are you using this and why are you using that,’ I have no time for that. I’m like, ‘well then show up at an appointment and I’ll talk to you.’ I’m not gonna argue my point.”

(Clinician)

This clinician comment highlights the very real time pressure physicians face in their practice and how this is exacerbated within this cross-system complexity in serving youth from foster care. It further underscores the lack of clarity around who is ultimately responsible for coordinating communication across the varied stakeholder groups.

“trying to find another supervisor to provide the consent and having to update another senior supervisor on what’s been going on with that child prior to so they don’t have the background on the child like your own senior supervisor would.”

(Caseworker)

Despite some concern, caseworkers generally expressed that, in their experiences, participants on the team were heard, even though a single mandated authority made the final decision. Caregivers, however, stated that they were often not given enough say in the Informed Consent and treatment processes, and that a unilateral mandated authority can make other stakeholders feel overruled and as though their opinions and perspectives were not valued.

“Now if you have an unseasoned foster parent, no, we’re not going to weigh their decision that much. But if you have someone who’s been doing this five, ten years you know plus years and has had lots of kids you need, you need to take their decision seriously. Or what they’re telling you seriously because they’ve seen it before, and they have something to make good sound judgments.”

(Caregiver)

Alumni discussed that the process of Informed Consent and having an external mandated authority can protect against bad actors who might be making expedient decisions for child welfare case practice decisions (i.e., preventing repeated removals from foster placements), rather than on behalf of foster youths’ perceived best interests. Clinicians asserted that having a single, external authority could allow for objective oversight and guard against the hazards of overprescribing, inappropriate dosages, and polypharmacy.

Working as an Inclusive Team:

All stakeholder groups identified the fact that the Informed Consent process, and ultimately, the treatment decisions, are informed by a team-based approach with many actors, including caregivers, caseworkers, social workers, doctors, biological parents, therapists, teachers, other biological family members, and the youth themselves. Emphasis on the importance of shared decision-making for antipsychotic prescription in foster care as an inclusive team effort was present throughout the stakeholder groups, though it does create obstacles in terms of convening meetings for numerous individuals.

“I think a team approach is absolutely the way to do, especially for foster care. I mean when you have your own children you have you, you have your husband and your doctor and, I mean, that’s sort of your team and when it comes to children who are in foster care it needs to be foster caregiver, caseworker, the doctor, it needs to be all the people whose job it is to care for that child so I think a team approach is probably the best way.”

(Caregiver)

For clinicians and caseworkers in particular, the acknowledgement of a team was often related to the inclusion of the biological parents as part of this team. While alumni, caregivers, caseworkers, and clinicians were often present for decisions, caseworkers and clinicians identified the importance of considering the biological parents as an integral part of the team, especially if reunification was the goal of foster care placement. This notion is reflected in the following caseworker quote.

“I think it’s really important to collaborate with the entire team…and involve our [biological] parents in every step of the way; inviting them to meetings, reminding them… I think it’s really important to try and encourage doctors to do their job and call the parents if they won’t call them. Sometimes, you know, making sure I call the parent and let them know or have my team call the parent and let them know of the bigger issues, because we can’t just, we need to make sure the parent is aware of the behaviors before we’re asking them to do something or consent to something, including the parents’ attorney because sometimes parents don’t understand their rights or what in the interests of their child. So if they have a family court appointed attorney to make sure the court appointed attorney does know. Hey, we need this consent signed and also including the child’s attorney to prevent things from getting out of hand. And also I think it’s very important to make a lot of attempts to include the parent in making the consent through different parties or different people.”

(Caseworker)

Relatedly, one clinical quote further conveys the importance of including biological families.

“When I’ve talked to County workers the sense I’ve gotten is that when at all possible the child is going to be returned to the biologic family and they really want the biologic family to feel that the treatment that we’re providing is acceptable to them so they’re gonna support so that we don’t say, were gonna put Johnny on X, Y, Z medicine so they get home and mom and dad are gonna stop it.”

(Clinician)

Treatment Delays:

However, while inclusivity is a valued concept, one concern with this approach is that it may lead to delays in securing treatment for youth in foster care. Relatedly, there are other potential delays with the Informed Consent process specific to youth in foster care. For example, difficulties reaching the single mandated authority (whether it be a biological parent or agency personnel) were often the culprit for such delays.

“The disadvantages are not being able to get a hold of the proper people to get the consent signed because that causes a delay in getting the child medicated properly and getting help for the child.”

(Caregiver)

“time is a big issue…consent or anything to get from the agency does take a lot of time. I’ve experienced that personally, you know, you ask for something and they will take months just to like, you know, react okay, be like, ‘we are going to get this done’”

(Alumnus)

The delay in the time it takes to obtain Informed Consent to treatment was not always discussed with negative connotation, however. While caseworkers and caregivers identified delays as frustrating, clinicians thought that the time it takes to obtain Informed Consent through this system sometimes allowed for more thoughtful decisions to be made.

“I think it gives everybody time to better understand what can happen with the medications and it’s not, um, done very quickly. Sometimes things can cool down. And they may not want the medication as urgently. And it also gives us an opportunity to identify places where they can go for therapy but to identify other resources. I think I sound horrible, but, you know, if somebody comes to me with an ear infection, I’m definitely going to treat this ear infection, but for behavior, um, I really want to see if we can calm things down, it may not be as urgent in a week or so.”

(Clinician)

Similarly, alumni recognized that a delay in obtaining Informed Consent could prevent hasty and unnecessary antipsychotic prescriptions.

“they wouldn’t be able to instantaneously prescribe the antipsychotic medication so the person or child didn’t need it, they wouldn’t be just dropping this new medication on them just because it was more convenient.”

(Alumnus)

Discussion

This qualitative study examined the perceptions of key stakeholders (clinicians; child welfare caseworkers; child welfare caregivers; and recent alumni of the foster care system) with lived experience in prescribing, being prescribed, or overseeing prescriptions for antipsychotic medications for youth in foster care. This is important given the abundant research on the alarmingly high rates of prescriptions for high-risk antipsychotic medication for children and youth in foster care (Barnett et al., 2019; Crystal et al., 2016; dosReis et al., 2011; dosReis et al., 2001; McMillen et al., 2007; Olfson et al., 2015; Rubin et al., 2012; Stambaugh et al., 2012). The specific focus was on their understanding of shared decision-making and the Informed Consent to treatment processes pertinent to prescribing and monitoring of high-risk antipsychotic medication, as well as the trade-offs in using a team-based approach. Interestingly, although the concepts of shared decision-making and Informed Consent (to treatment) are distinct, our participants often used them interchangeably, therefore our discussion of these concepts is intertwined, to represent the participants’ perspectives on these concepts. The results of this study provide insights crucial to understanding both the timely federal and state legislative mandates and guidelines (e.g., Children’s Bureau 2012 Information Memorandum; Fostering Connections to Success and Increasing Adoptions Act of 2008) for the oversight and coordination of mental health service delivery to youth in foster care and present a window into the nuances and complexities that shape the clinical encounters that face this most vulnerable population. Several important themes and patterns emerged in the study results, many of which are reflected in recent advances in related research on this topic.

Trade-offs for utilizing a team-based approach

As discussed previously, one key element of federal guidelines and mandates centers on the need for an inclusive team-based approach in which all parties have a shared understanding of and role in the ultimate treatment decisions and ensuing case matters. This approach prioritizes youths’ roles (i.e., “patient-centered”) in medical decision-making. Moreover, this process is echoed in health and mental health practice more generally (Bender Simmons, 2017; Melton, 2010) and in child welfare best case practices approach (Berrick, 2017; Toros, DiNitto, & Tiko, 2018). In our study, all stakeholder groups valued a team-based approach and believed it was necessary for authentic Informed Consent to unfold. The value that the diverse stakeholders placed on one another’s role and participation is reflected in recent research supporting inclusive, team-based approaches to shared decision-making and in supporting youths’ awareness and comprehension of their decision-making rights (Barnett et al., 2016a; Barnett et al., 2016b; Barnett et al., 2017; Bertram, 2018; Seales et al., 2007). Further, Jolles and Wells (2016) also assert that a team-based approach is a valuable ingredient in accessing mental health services for youth in foster care, notwithstanding the barriers to engaging caregivers from diverse environments.

In our study, there was consensus about the benefits of having many stakeholders involved, especially when they collectively provided objective protection for youths’ current and ultimate best interests. Study participants believed the Informed Consent and shared decision-making processes were a means to perform checks and balances across the mental health care system, the medical system, and the child welfare system. However, while a great deal of respect for the team-based approach and each other’s roles was present in our findings, there was also an immense amount of frustration related to having to work across state agencies, health systems, and a very broad array of stakeholders. The team process was also seen as a potential burden, causing undue delay and possible harm to children in need of immediate assistance. Additionally, sometimes youth were acknowledged as critical team members in the clinical setting, and other times they were simply the subject of communication with little effort to involve them or solicit their input. These frustrations are not altogether surprising, however, given the novelty of working across child-serving systems that may possess conflicting objectives from one another, and with stakeholders who likely had no previous working relationship (Bender Simmons, 2017). The complexities of diverse child-serving systems (Barnett et al, 2016b; Toros, DiNitto, & Tiko, 2018) make it difficult for a standardized understanding of stakeholder roles, particularly in the implementation of federal guidelines and mandates in clinical encounters.

Navigating cross-system complexity

While each stakeholder group manifests different roles in the Informed Consent process, there were many similarities in what they valued in the process as well as a recognition that their roles were genuinely distinct from one another. For instance, the theme of communication among parties was viewed as vital, but caregivers and caseworkers readily recognized inherent knowledge and power dynamics among clinicians and youth, which sometimes can inhibit effective communication. Clinicians emphasized the need for communication and Informed Consent to happen in-person, during appointments, and were often frustrated by mandated authorities – who were often in the contiguous child welfare system and not the medical system -- not being present or not responding appropriately, perhaps implying that they viewed themselves as the ultimate drivers of the entire process. Meanwhile, alumni focused more on communication with youth, or youth involvement, rather than the importance of cross-stakeholder communication.

Moreover, while there was an acknowledgement of the lengthy time and delays it sometimes took to obtain Informed Consent, there were differing perspectives on whether this was a positive or negative aspect of the process. This echoes recent research conveying that youth from foster care are frequently inadequately informed about treatment side effects, monitoring of dosages, and overall treatment planning with medical providers (Bertram, 2018; Floersch et al., 2009; Longhofer et al., 2011; Murphy et al., 2015). That is, as asserted in other studies (e.g., Stiffman et al., 1997), access to timely care is a paramount concern for youth. Yet access needs to be balanced with adherence to youths’ wishes and voice (Bertram, 2018), and though this may cause delays to treatment, it might be the paramount force in the process.

Clinicians and youth generally placed more value on youth agency and comprehension during the Informed Consent process than other stakeholder groups. Caseworkers and caregivers also emphasized their roles as protectors of youth and as stakeholders who knew the youth best. This theme is partially reflected in the research of Barnett and colleagues (2016a) who found that foster and adoptive parents were divided about who they believed should possess primary responsibility for providing Informed Consent to treatment; indeed, their study noted general overall confusion among all stakeholders about who was legally responsible for this action. Our findings do not necessarily suggest a deflection of the responsibility for providing Informed Consent, but perhaps are an indication that in prioritizing youths’ best interests, caseworkers and caregivers assumed they were the best equipped to do this. Clinicians and alumni, on the other hand, were perhaps more willing to recognize the agency and autonomy of youth in foster care.

Limitations

There are several limitations in this study that should be noted. First, three of the stakeholder groups from our study represent only four states in the U.S. Thus, our findings do not reflect widespread awareness about federal guidelines and processes outside of these states. Relatedly, because the sample was gathered using snowball sampling techniques, participants may have been somewhat positively predisposed in their assessment of federal guidelines and oversight mechanisms for prescribing antipsychotic medications. That is, this sample of key stakeholders may possess a more intimate familiarity with these mechanisms and have already considered the strengths and challenges of them. Their thoughtfulness in this study may reflect modifications they instituted in response to some of the challenges they discussed. An additional related issue is that the youth were from across the US, while the other three stakeholder groups were from the four study states. While this is a limitation, there was a sound rationale for recruiting participants in this manner. We believed it was a bigger priority and a more feasible objective to locate youth with specific histories aligning with the project goals (i.e., recent histories of receiving AP medication while in the foster care system and were willing to discuss this history) who may be living in multiple locations across the country, than it was to recruit foster alumni from these specific states. Essentially, while we could conceivably locate alumni in the four study states who met our criteria, we could not guarantee that we would locate enough alumni from each state to meet our data collection and data analysis needs. Finally, our knowledge about the backgrounds and case histories of the foster care alumni participants is limited and although we verified their involvement with both child welfare and mental health systems (as minors) and receipt of antipsychotic medication(s), IRB restrictions prevented us from delving further into the lives of these individuals. Some of these case histories may have had a bearing on their overall perceptions of the federal oversight mechanisms.

Conclusion

This study brought the voices of multiple stakeholders to bear on federal and state guidelines and mechanisms –specifically Informed Consent to treatment and shared decision-making -- regarding the prescriptions of and oversight for antipsychotic medications for youth in foster care. This study helps fill the gaps in research on stakeholder-informed perceptions of patient-centered care for mental health treatment (Barnett et al., 2019). Numerous themes emerged that provide context in employing a team-based approach for youth engaged with multiple child-serving systems. These themes illustrate the necessary components of successfully implementing Informed Consent and shared decision-making as well as the barriers and concerns germane to this process. Furthermore, each stakeholder group raised salient points about the mandated authority policy mechanism. The findings address the nuanced complexity of the trade-offs inherent in delivering mental health care to youth involved in foster care. They reveal a tension between delivering timely, patient-centered care while also grappling with the complexity of communicating with multiple stakeholders involved in youths’ lives, many of whom had vastly different comprehension levels of youths’ cases and the intricacies of prescribing and monitoring prescriptions of antipsychotic medications. Consistent with the acknowledgement of the many variations in individual cases, stakeholders generally considered that the roles of different team members in the Informed Consent and shared decision-making processes should be adaptable. They also speak to the need for comprehensive parameters that are consistently implemented for stakeholders.

Finally, overall, this study reveals intriguing potential next steps in research on the disproportionate rate of high-risk antipsychotic prescriptions for youth in foster care. For example, the extent to which clinicians and other stakeholders are utilizing a trauma-informed, team-based approach to understanding the emotional and behavioral health of youth in foster care will help inform the judicious prescribing of antipsychotic treatment. Relatedly, it is also important to understand how clinicians weigh the risks and benefits of prescribing antipsychotic medications.

Public Policy Relevance.

Over the past decade, multiple federal and state legislative efforts were implemented to address the disproportionately high rates of high-risk antipsychotic medications for youth in foster care. As a result, mandates and guidelines were developed to initiate or improve the oversight and coordination of mental health services to youth in foster care. This qualitative study examines the experiences and perspectives of four key stakeholder groups in how they understand and navigate these legislative mechanisms and how mental health services—and the policies that guide them--for youth in foster care can be improved. Through the important lens of “lived experience,” vital lessons can be understood and the quality and safety of services can be improved