Factors That Hindered Care Seeking Among People with a First Diagnosis of Psychosis

Abstract

Aim:

Evidence-based treatment can improve psychosis outcomes, but service providers need to understand and address the reasons people experiencing first episode psychosis avoid or delay care seeking. The goal of this study was to identify reasons care seeking might be postponed, from the points of view of patients, caregivers, and health care professionals in a large health care delivery system, in the US, without an early psychosis intervention program.

Methods:

Twenty-two patients who had received an initial psychosis diagnosis and ten of their caregivers were interviewed about their experiences and pathways to care. Additionally, 15 administrator or clinician key informants with responsibility for psychosis services were interviewed and asked to describe ways that they thought early psychosis identification and treatment engagement could be improved. All interviews were transcribed, coded, and analyzed together using thematic analysis.

Results:

Some patients did not perceive their early psychotic experiences as concerning because they were familiar. Among those concerned, the desire to make sense of their experiences and avoid detection or stigma caused some to conceal symptoms or isolate themselves. Caregivers who observed withdrawal often attributed it to typical adolescent behavior, which led to treatment delays. Legal and privacy protections led to delays among young adults.

Conclusions:

To attract individuals to early psychosis services, outreach and engagement programs should help individuals and caregivers recognize their experiences as opportunities for care, and design and market services that promote sense-making, offer hope, and reduce stigma and system-level privacy-related barriers to care engagement.

INTRODUCTION

Approximately 56,000 adolescents and adults under age 30 make a first presentation of psychosis symptoms to a health care setting each year in the United States (Simon et al., 2017). Although longer duration of untreated psychosis is associated with persistence of symptoms and poor functional outcomes (Marshall et al., 2005) and early successful treatment can positively alter prognosis (Kane et al., 2016), delays in receiving treatment are common. In the US, an average of two years elapse between symptom onset and receipt of effective treatment (Ho, Andreasen, Flaum, Nopoulos, & Miller, 2000).

Early intervention (EI) programs have emerged as the “gold-standard” approach for first episode psychosis (FEP) treatment (Heinssen, Goldstein, & Azrin, 2014). These programs promote shared decision-making and personalized treatment approaches, have been implemented across Australia, Canada, Scandinavia, and the United Kingdom, and are now spreading throughout the United States (Heinssen et al., 2014). One goal of these programs is to reduce the duration of untreated psychosis through community outreach and early detection (Heinssen et al., 2014). To be successful, these programs must address the reasons people avoid or delay care when psychosis initially presents, particularly among individuals who do not present at EI programs, if they are to draw them into treatment.

Prior qualitative studies have identified a number of factors that can influence pathways to care and delays in treatment (Anderson et al., 2015; Anderson, Fuhrer, & Malla, 2013; Ben-David, Cole, Brucato, Girgis, & Munson, 2018; Boydell, Gladstone, & Volpe, 2006; Cabassa et al., 2018; Cadario et al., 2012; Ferrari et al., 2018; Ferrari et al., 2015; Jansen, Pedersen, Hastrup, Haahr, & Simonsen, 2015; Judge, Estroff, Perkins, & Penn, 2008; Tanskanen et al., 2011), however two-thirds of these studies took place outside the United States, and most reflect the experiences of patients who sought care in specialty EI programs. Barriers to care seeking may differ in settings where EI programs are inaccessible or unavailable. Further, while prior studies have examined health service factors that influence pathways to care, perspectives of health care administrators and clinicians are largely absent in the literature. In this qualitative study, patients with a first diagnosis of psychosis, caregivers, and health care professionals at large US health care delivery systems without integrated EI services were interviewed to identify care pathways and factors that contribute to delays in psychosis care seeking.

METHODS

All participants provided informed consent prior to participation; the study was approved and monitored by the Kaiser Permanente Northwest Institutional Review Board.

Patient and Caregiver Interviews

All patients received care at Kaiser Permanente Northwest, a private, not-for-profit, group-model, integrated health system that coordinates and provides care for about 575,000 members in Oregon and Washington. Kaiser Permanente Northwest members are representative of the service area population in terms of race/ethnicity and sex; 67% are White, 8% are Hispanic, 8% receive Medicaid insurance coverage. Kaiser Permanente Northwest provides inpatient and outpatient medical, mental health, and addiction services. Kaiser Permanente Northwest does not have a dedicated EI program. A state-funded EI program exists in the community and patients are sometimes referred however most patients who are Kaiser Permanente Northwest members do not qualify for state-funded EI services because they are privately insured.

Using Kaiser Permanente Northwest electronic health record (EHR) data, we identified members aged 15–29 years who received a first-occurring diagnosis of any psychotic disorder in the two years prior to 08/31/2015. Eligible ICD9 diagnosis codes included 295.0 through 295.9, 296.04, 296.14, 296.24, 296.34, 296.44, 296.54, 296.64, 297.1, 297.3, 298.8, and 298.9. Kaiser Permanente Northwest membership in the year prior to diagnosis was required. We reviewed the EHR of each potential participant and excluded those who had any previous history of psychosis documented in chart notes, had a miscoded diagnosis of psychosis, and those who were acutely psychotic and might not be capable of providing informed consent. To further ensure that patients were able to consent to research, their paneled primary care providers or psychiatrists were emailed prior to patient contact to allow them to decline study participation on behalf of their patient. This was done as a courtesy to the providers who preferred to know in advance when their patients were being contacted for research purposes. Eligible patient participants were then mailed a letter inviting them to attend a 1-hour in-person interview, and to refer family members to be interviewed (caregivers did not participate in lieu of patients).

Two master’s-level mental health clinician interviewers met individually with patient participants and caregivers at Kaiser Permanente Northwest medical facilities or by phone. Interviewers MY, JC had more than 20 years’ experience conducting diagnostic and qualitative interviews in the context of research studies of patients with serious mental illnesses, including adolescents and people experiencing a first diagnosis of mood or psychotic disorders. Interviews took place between November 2015 and March 2016, participants were asked to describe early signs and symptoms and responses immediately and over time; disclosures (or lack of) to family, friends, health care providers; and positive and negative health care experiences. Patient interviews lasted about one hour; caregiver interviews lasted about 30–45 minutes. Patient and caregiver participants each received a $50 gift card incentive.

Key Informant Interviews

Key informants were administrators or clinicians with a specific interest in psychosis-related care or responsibility for programs focused on early psychosis services at Kaiser Permanente Northwest or any of four additional Kaiser Permanente regional healthcare systems participating in the Mental Health Research Network: Colorado, Northern and Southern California, Washington. None of these locations offered integrated early intervention programs. Key informants were identified either by research investigators or by one another; they were not linked to patients in the study.

Key informants were emailed and asked to participate in a 15–20-minute telephone interview conducted by BJY. All identified informants agreed to participate. Interviews took place between July and September 2015. Key informants were asked to consider their experiences organizing or providing care for people making a first presentation with psychosis symptoms and describe their perception of the patient/family experience, initially and over time; who “falls through the cracks” and does not receive adequate/timely treatment; and suggestions for how to improve identification and early psychosis treatment. Key informants were given a chocolate bar in appreciation

Analysis

Interviews were transcribed verbatim; transcripts were coded using Atlas.ti software (Friese, 2011). The analysis was data driven, rather than theoretically driven. We had no a priori codes identified at the outset of our review of transcripts and used an inductive qualitative approach to identify codes and later themes as patterns emerged within the data. Using content analysis techniques, the analysis team created an initial coding scheme through an iterative process of reading and coding transcripts and meeting to resolve discrepancies using the first 10% of completed interviews. Remaining interviews were coded following finalization of the coding schema and interview completion. Strategies to Check coding was completed on 10% of patient and caregiver transcripts; agreement was 87%. Two key informant transcripts were reviewed; agreement was 85%. Patient, caregiver, and key informant interviews were analyzed together using thematic analysis (Braun & Clarke, 2006, 2012). After multiple rounds of reading transcripts and meeting to discuss codes and potential themes, we explored patterns and inconsistencies within the data and across respondent types (patient, caregivers, key informants), and refined themes. Codes analyzed for this report were patient and caregiver experiences of early signs and symptoms and their perceptions of factors that hindered care seeking, as well as key informant descriptions of the types of patients that are difficult to engage in early psychosis treatment.

RESULTS

We interviewed 22 patient participants, 10 caregivers, and 15 key informants. See Table 1 for participant characteristics and appendices for interview guides and recruitment outcomes. There were no significant differences in age, gender, or days since diagnosis between patient participants who enrolled and those that did not. The themes and illustrative quotes that follow describe how emergent psychosis was experienced by patients, caregivers, and providers, and factors that were perceived as contributing to delays in care seeking. We found that care seeking was delayed when individuals did not recognize psychotic experiences were atypical; when, while attempting to understand or cope with their experiences, individuals hid their symptoms or isolated themselves; when caregivers did not realize the extent of the symptoms; and when caregivers were prevented from initiating treatment on behalf of their adult children.

Table 1.

Characteristics of participant samples

	N	%	Mean	SD
Patient sample
Age	--	--	21.6	3.4
Months since index diagnosis	--	--	15.9	6.3
Female	11	50%
Race
White	14	64%
Asian/Pacific Islander	3	8%
Black	1	4%
Native American	0	0%
Ethnicity
Hispanic	3	14%
Caregiver sample
Parent	8	80%	--	--
Grandparent	1	10%	--	--
Sibling	1	10%	--	--
Key Informant sample
Chief of Psychiatry	4
Psychiatrist	3
Medical Director of Behavioral Health	2
Behavioral Medicine Specialist	2
Director of Inpatient Psychiatry	1
Senior Administrator for Mental Health	1
Psychologist	1
Psychiatric Mental Health Registered Nurse	1

Theme: Sometimes care seeking is delayed because individuals do not perceive that psychotic experiences are unusual.

Because of the intrapersonal nature of sense-making, quotes supporting this theme are limited to patients. Many reported perceiving early psychotic symptoms as consistent with other experiences they had had throughout their lives:

“I thought the symptoms I’d been having, just about my whole life, were all normal things that people just experienced.” (female, age 20)

“When I was younger I had this weird sense that the objects were alive. And I think, to some point, all kids have some sort of sense of that. But I, you know, went to the point where some of them actually did speak to me. And I thought that was a normal thing, because I was a kid. So I think hearing voices almost seemed natural because it wasn’t like it was something that I hadn’t experienced before.” (female, age 21)

Theme: When psychotic experiences are recognized as unusual, some individuals cope by hiding symptoms until they can make sense of them.

Some patients reported being confused and having difficulty discerning whether perceptual or thought disturbances were real or imagined. Rather than alerting caregivers or physicians as psychotic experiences emerged, many patient participants concealed or ignored symptoms:

“I just got better at disguising and hiding… I think that’s what is easier at first, to just not deal with it and to pretend that it’s not happening.” (male, age 18)

The most common reasons for hiding symptoms were to avoid dealing with them, to allow time for them to resolve on their own, and to avoid stigma:

“I tried to keep it to myself because I honestly thought that it’s just going to go away. It’s not something to worry about. I don’t want somebody to think I’m crazy. And so I just didn’t tell anybody.” (female, age 21)

This theme was common across the groups; parents and clinicians also acknowledged how skilled patients are at hiding symptoms (below and Table 2):

Table 2.

Additional sample quotes representing clinician and caregiver perspectives.

Participant	Example Quotes
Theme: Sometimes care seeking is delayed because individuals do not perceive that psychotic experiences are unusual.
Clinician	“… the reality testing is so intensive enough that they know something is really, really wrong but yet, they can’t really put words to it. They get further along in their schizophrenia, they lose so much reality testing and then…but oftentimes, they don’t really see that there’s a big problem, you know.”
Theme: When psychotic experiences are recognized as unusual, some individuals cope by hiding symptoms until they can make sense of them.
Caregiver	“But that was the first we knew anything about it [at the emergency room]. Things had been happening, but she was hiding it well.”
Caregiver	“But the communication in our family has always been kind of the thing that we had to work on in the family sessions and that sort of thing, because she wasn’t very forthcoming. And we’re also the type to kind of just ignore things, you know.”
Caregiver	“I wasn’t angry. I was scared, definitely scared. I think I felt some guilt. I didn’t understand how we could not know. She hid it very well. At one point, she did reveal that it bothered her how much people would react or say to her that…either that she was very good at hiding it or you must have been suffering by yourself by not sharing it or telling anyone. And that bothered her because I think she felt like ‘I was doing what I needed to do to survive. It feels like people are devaluing…or that I did something wrong.’”
Caregiver	[Interviewer: And he never shared with you what was going on?] “Never while he was in high school. Never once. No. We found it all out much later when it got much worse.”
Caregiver	“I really felt like we’re a pretty close family. We do a lot together. And…[clears throat]…I think she was just really good at hiding it…really good at hiding it.”
Theme: As symptoms become more difficult to mask, some individuals isolate themselves, making it harder for others to recognize problems.
Caregiver	“I think looking back to like just the most initial stages, looking back it made me sort of think that like, social withdrawal, I guess was a first sign. She’s a pretty social person.”
Caregiver	[Interviewer: “If you can, describe maybe what the earliest signs or symptoms that you noticed were.”] “First becoming withdrawn…. not wanting to go anywhere or be around people.”
Theme: Caregivers often attribute symptoms to typical teenage behavior.
Clinician	“I think it’s sometimes difficult for families to grasp what that is, if this is really something that is only going to be brief and it will pass on or something that will be… Or sometimes dismissal of what they’re seeing as possibly something like a phase that the client has and they don’t have to deal with.”
Caregiver	“If I’d kind of recognized them [symptoms], I might have said something, but they weren’t that out of the ordinary that I noticed it. And then, but he was always kind of a difficult child. He didn’t like school, etcetera…So it was hard to distinguish whether it was a mental illness. We knew he had attention deficit disorder but whether he had an additional mental illness, I don’t think it really occurred to us like early enough, if that tells you.”
Caregiver	“…we had a family vacation which she went on and she got really mad over little things. And very just like, over the top. But I didn’t really put two and two together at that time. I just thought, ‘wow, what’s the deal’? I mean, overreacting.”
Caregiver	“I might have just been blithely, you know, no, everything is fine. You know, my teenager is a moody teenager, like most teenagers…so without realizing that it was more than just moodiness.”
Caregiver	“I thought maybe she was a little depressed. And because she had--workwise, just you know, this job and that job. Missing her boyfriend, and just kind of natural, but it was kind of a mild depression, not like an extreme thing but you know, just feeling a little down and kind of lashing out.”
Caregiver	“I really had no idea. I guessed that something had happened at school. I offered on numerous occasions to go in and try behind the scenes to resolve it.”
Caregiver	I had a lot of my own problems going on at that time, so it was hard for me to really like focus on it, but I guess I just thought that--I don’t know. I guess I didn’t see it coming ‘til like a mental health crisis. But I just felt like she definitely had like maybe a lot of stuff from the past that she hadn’t dealt with before. It just seemed as though there was some kind of delayed reaction to like some sort of illness or problem that happened in the past.”
Caregiver	If my mom [patient’s grandmother] were here, she would say she would notice a lot of mood swings, you know. And then in high school and in college she would just be like very weepy and like super--you know, just like intensely emotional for something that maybe didn’t seem to warrant it. But I guess my mom always racked it up to like menstrual symptoms.”
Theme: Respect for autonomy and the privacy of emerging adults creates unique barriers to treatment.
Caregiver	“Because he’s eighteen and because that’s just their criteria. They can’t force someone to have…go to the hospital and have treatment. They’re an adult. And even though you know he may be not making rational decisions, you can’t do anything about it.”
Caregiver	“And when I texted him and said there’s this paranoia, this problem… And then he must have talked to [Doctor] about his anxiety and prescribed medication for it. But I wasn’t a part of those conversations. Even after they’re sixteen… Once they’re sixteen, they have privacy, right? So that’s just a problem, individual rights versus what they might need. And it’s just really a problem.”
Caregiver	“Also, it would have helped us to know, which we really didn’t think about, once your child is eighteen they’re an adult. And you will have no way to force them or encourage them in any way to have any kind of treatment if they don’t want to.”
Caregiver	“I wish I’d kind of known the legal structure that says when you’re sixteen we don’t have to tell you what’s happening with your kid. That’s most medical facilities don’t. And so if there was a diagnosis, we wouldn’t know it. At the age of eighteen, there’s just an abrupt change about if this kid says you can’t know anything, you can’t know anything. And I understand that that’s just the way it is. And it’s almost impossible to find a way for you to say, he’s not capable of doing this. Can’t we do something? I mean, the whole system is oriented towards the individual rights. And I suspect that it’s true that people that help with their own medical decisions ultimately do better with it. But you sort of say to yourself ‘a guy who thinks God wants him to go to Egypt may not make the best decisions.’ So I wish I’d known in advance that we should have paid attention. Because if we’d known there was going to be that deadline, facing eighteen… If we’d known at seventeen that something…we aren’t going to be able to do anything about him once he’s eighteen, we may have been more forceful and said this kid really needs help. He really needs help. He really needs help. And advocated more.”

“She was very good at keeping it from us. I didn’t understand how we could not know.” (Parent)

“The ones that fall through the cracks are oftentimes the ones where…the child learns how to hide the symptoms from the parent…And they’re very good at it, I’ll tell you, for short periods of time.” (Clinician)

Theme: As symptoms become more difficult to mask, some individuals isolate themselves, making it harder for others to recognize problems.

When asked to describe early signs and symptoms, at least two thirds of patients and caregivers reported social withdrawal was an early feature that signaled a change. This theme was common across all interview groups (see also Table 2). As patients experienced more frequent or severe mood or psychosis symptoms they withdrew from family and friends, limiting opportunities for others to detect concerning behavior.

“I became quiet and sort of in a dark state where I wouldn’t socialize with anybody. I was afraid to go out into public. And I would stay in my house. And I wouldn’t talk to anybody…I basically shut down…” (male, age 22)

A parent described her son’s sudden withdrawal:

“We saw an extreme change in his behavior and his personality…he no longer wanted to participate in anything that involved social interaction. From someone who had no trouble speaking his mind and expressing himself, he went to very secretive, wouldn’t share things that were bothering him. Internalized everything and kept it internally.”

An administrator explained how isolation can be missed during a routine clinical evaluation using a standard depression screening instrument (the Patient Health Questionnaire-9 is a 9-item questionnaire for screening, diagnosing, and monitoring the severity of depression; in the participating health system it is commonly used in primary and specialty psychiatric care):

“… along with the psychosis is often depression and isolation. And it’s the isolation more likely that causes the concern of primary care… but the PHQ-9 can’t catch that. It’s a bad barometer for these illnesses…And [if] we don’t have any other easy barometer to help primary care become more aware it really will be, and always has been, dependent on the family to say there’s something wrong with my child.”

Theme: Caregivers often attribute symptoms to typical teenage behavior.

Prior to any psychotic experiences, and likely a contributing cause of the aforementioned withdrawal, the majority of patient participants reported first experiencing anxiety or depression symptoms in early adolescence. Even when caregivers observed mood changes and concurrent withdrawal, if they had not seen overt signs of psychosis or unusual behavior they often assumed their child was experiencing a developmentally typical phase. This theme was common across caregiver and clinician interviews (see also Table 2):

“I think probably the earliest things I noticed were some depression. She was still doing very well in school, but she was spending a lot of time on her own in her bedroom, which I kind of ascribed to typical teenage behavior.” (Parent)

Clinicians reported that lack of exposure to serious mental illnesses, and denial among those with family histories of psychosis, can make it hard for caregivers to recognize psychotic symptoms: “The ones that fall through the cracks are oftentimes the ones where… the parents for some reason or another think this is just adolescent behavior.”

Theme: Respect for autonomy and the privacy of emerging adults creates unique barriers to treatment.

This theme was unique to caregivers. Among patients who were adults at the time of their episode, protections meant to respect autonomy and privacy were a barrier to family member involvement in care (see also Table 2):

“…he had just turned 18…so he was legally required to call in for himself. But I would call in and say, ‘I’m concerned my son is very, very depressed. He’s getting quieter; he’s having a hard time speaking sometimes. He needs to see somebody’. And I was told every time, ‘you can’t call on his behalf’… I finally got him to call, but at that point, he wasn’t able to speak. He became catatonic. He could speak enough to say, ‘I’m having trouble. I can’t sleep’. He was told there were no appointments available…And so I finally got him in to see this outside doctor… but it was too late not to avoid hospital. I felt like it could have been avoided had we had him in treatment earlier…” (Parent)

DISCUSSION

Our interviews revealed five themes that contribute to delayed treatment seeking among people experiencing psychotic symptoms at a large health care delivery system in the US. Four themes highlighted the challenge of identifying emergent psychosis by relying on the affected person to perceive and communicate their internal experiences; the final theme highlighted the limitations that caregivers face in seeking treatment on behalf of affected young adults.

Consistent with studies in other countries and treatment settings, many patients did not conceptualize their symptoms as part of a developing mental illness and did not recognize the need to seek help (Anderson et al., 2013; Cabassa et al., 2018; Cadario et al., 2012; Judge et al., 2008). Other patients were very concerned by changes they noticed, but unsettling experiences often led them to hide their symptoms. When untreated symptoms became more difficult to manage, patients sought ways to avoid detection, including by disengaging from relationships and school. Components of this experience voiced by patients in our sample, including questioning the reality of internal experiences (Judge et al., 2008), hiding (Boydell et al., 2006; Tanskanen et al., 2011), ignoring symptoms while trying to understand them (Boydell et al., 2006; Judge et al., 2008), fearing the stigma of mental illness (Boydell et al., 2006; Jansen et al., 2015), hoping symptoms will resolve naturally (Boydell et al., 2006; Jansen et al., 2015), and socially withdrawing (Boydell et al., 2006; Judge et al., 2008; Tanskanen et al., 2011) have been described previously in the early-phase psychosis literature. Our findings demonstrate that these behaviors are often effective at hiding early psychosis from caregivers and even clinicians. Early psychosis educational campaigns (Srihari et al., 2014) and efforts to destigmatize mental health help seeking among young people may help disrupt this cycle.

Our finding that caregivers did not recognize or underappreciated early illness warning signs or did not identify the need for treatment is consistent with previous research in other contexts (Addington, Van Mastrigt, Hutchinson, & Addington, 2002; Cabassa et al., 2018; Cadario et al., 2012; Judge et al., 2008). Caregivers in our sample, as in prior studies of caregivers in the US and UK (Bergner et al., 2008; Cabassa et al., 2018; Connor et al., 2016; Corcoran et al., 2007; Ferrari et al., 2015; Tanskanen et al., 2011), commonly rationalized that behavior and personality changes were developmentally typical. Our work uniquely highlights that clinicians also sought alternative explanations for aberrant behavior, perhaps reflecting their own reluctance to identify emergent psychosis but probably even more likely, the diagnostic uncertainty of the early psychosis period.

Difficulty distinguishing prodromal psychotic symptoms from acute affective symptoms or typical teenage behavior is consistent with previous studies in the UK and New Zealand (Cabassa et al., 2018; Cadario et al., 2012; Tanskanen et al., 2011), demonstrating consistency in how patients present and how caregivers and providers interpret their behavior across a range of cultural and health care contexts. Psychiatric comorbidity (most commonly anxiety and depression) is prevalent among youth at clinical high risk for psychosis (Addington et al., 2017; McAusland et al., 2015). However, another unique contribution of the present study is that our clinical informants noted that functional indicators of serious psychiatric impairment are not typically identified by routine office-based mental illness screening instruments, potentially resulting in missed opportunities for earlier identification of symptoms.

Even when caregivers recognized psychotic symptoms, they were often hindered from seeking care on behalf of young adult patients because of protections on patient privacy and autonomy. This is an important impediment that is underrepresented in the literature. More work is needed to identify effective pathways that respect young adults’ self-determination and privacy while simultaneously allowing parents and caregivers to engage support on behalf of their loved ones and for themselves.

A few limitations may limit the generalizability of our findings: patient and caregiver samples were drawn from a single regional health system and were predominantly White; by design patients were between the ages of 15–29. Samples were small, but comparable to other published qualitative samples in this population (cited throughout this text). The low rates of patient enrollment and caregiver recruitment reflect the difficulty of studying this population, however, they nonetheless introduce the possibility that participants may not reflect the population as a whole. However, the broad consistency of our results with previous studies suggests that many of the patterns and barriers identified may be consistent across a large number of contexts. Nonetheless, more research is needed to determine whether similar patterns are present in minority groups (Singh & Grange, 2006) and older patients. We were unable to interview a large number of clinicians in different roles (e.g., case managers, counselors) for our clinical stakeholder group. However, by interviewing administrators and clinicians representing five systems with varying approaches to FEP services, we ensured that a variety of stakeholder perspectives were represented.

This study examined barriers to care seeking among individuals experiencing a first diagnosis of psychosis in a large US health system without integrated early intervention services. Consistent with findings in other settings, patients in our sample often failed to recognize early symptoms as concerns, hid symptoms, and isolated themselves as symptoms worsened. Caregivers and providers often assumed observed changes were part of adolescence or due to mood disorders. When caregivers recognized psychosis, their ability to help young adult patients get treatment was limited by privacy and legal protections. Previous research clearly demonstrates that the deleterious trajectory associated with serious psychiatric illnesses can be avoided with early, effective treatment and ongoing support. Our findings suggest that to attract individuals to services, outreach and engagement programs need to help individuals and caregivers recognize their experiences as opportunities for care, and design and market services that promote sense-making, offer hope, and reduce stigma and system-level privacy-related barriers to care.