Understanding Pathways to Care of Individuals Entering a Specialized Early Intervention Service for First-Episode Psychosis
Abstract
Objective:
This study aimed to understand the pathways to care from the onset of a first episode of psychosis to entry into a specialized early intervention service (EIS) for individuals with nonaffective psychosis.
Methods:
A sample of 20 individuals who participated in an EIS and ten of their family members were enrolled. Semistructured qualitative interviews were used to characterize participants’ lives during the onset of psychosis and explore their help-seeking events from the onset of psychosis to entry into the EIS. Data were analyzed by using grounded theory and a case study methodology.
Results:
The median duration between the onset of psychosis and EIS entry was 4.5 months. A grounded model emerged from the analysis that captured how help-seeking decisions were influenced by the misattribution of symptoms, stigma, and self-reliance. These factors created a cloud of uncertainty in which individuals experiencing early psychosis and their family members struggled to make sense of what was happening, how and when to seek help, and what to expect from treatment. Contacts with the health care system were critical junctures in the pathway to care that could reduce or increase uncertainty and expedite or delay EIS entry.
Conclusions:
Findings indicate that efforts to expedite EIS entry should focus on reducing the uncertainty that affected individuals and their family members face when seeking care by improving their experiences with mental health services.
The period between the onset of first psychotic symptoms and treatment initiation, also known as the duration of untreated psychosis, is a critical concern for the mental health system (1). Longer duration of untreated psychosis is associated with negative outcomes (for example, worse functioning) (2–5), and efforts to understand it have focused on identifying delays along the pathway to care. Pathways are described in terms of help-seeking contacts, including formal and informal sources of help, and as heterogeneous and influenced by contextual factors (6,7). Help seeking is often mediated by family members who can initiate or delay care (8). Previous qualitative studies have identified factors that create barriers to help seeking, including misattribution of psychotic symptoms, stigma, lack of knowledge about mental health care, and health system factors, particularly negative interactions with providers (8–14).
Even though factors shaping pathways to care for people experiencing first-episode psychosis (FEP) have been identified, little is currently known about how these factors interact to shorten or lengthen pathways to care, particularly among individuals and families entering early intervention services (EIS) for FEP in the United States. This study aimed to understand pathways to care from the onset of psychosis to entry into EIS for individuals experiencing FEP and to develop a grounded model of factors that shape pathways to EIS.
Methods
Recruitment
The New York State Psychiatric Institute Institutional Review Board (IRB) approved study procedures. The sample was drawn from clients enrolled in RAISE (Recovery After an Initial Schizophrenia Episode) Connection, a coordinated specialty care program that uses a critical-time intervention framework, evidence-based early-psychosis treatments, shared decision making, and engagement outreach for young people ages 16–35 who experienced nonaffective psychosis for two years or less (15). RAISE Connection served a racially and ethnically diverse population, predominantly Hispanics and African Americans. At the time of this study, 34 clients participated in RAISE Connection. Nineteen were receiving services at the time of study enrollment, and the rest (N=15) had been discharged. Individuals eligible for this study were age 18 or older, spoke English or Spanish, received RAISE Connection services, and, for those still in care, were described by their clinicians as clinically stable. We contacted 26 of the 34 clients. Two refused participation, and four expressed interest but were lost to follow-up. Twenty participants enrolled in the study. As per IRB protocol, participants were invited to nominate a family member who was age 18 or older, spoke English or Spanish, and was involved in their pathway to care. Three people refused family involvement because of family unavailability or unspecified reasons. For five people who nominated a family member, staff were unable to obtain the family members’ permission to be contacted. Two nominated family members agreed to be contacted but were unreachable. A total of ten family members enrolled in the study. All participants provided informed consent.
Qualitative Interviews
Interviews were conducted by trained research assistants, audio recorded (except for two that were documented via interviewers’ notes), and professionally transcribed. Participants’ interviews were conducted in person and lasted 90 to 120 minutes. Interviewers reviewed and noted relevant information from participants’ RAISE Connection records before each interview. A semistructured interview guide was used to examine participants’ recollections of their pathways to care from the onset of psychosis to entry into RAISE Connection. Key elements explored included participants’ recollection of the onset of psychosis, help-seeking events, and future recommendations. A timeline visual aid adapted from a previous study was used to assist participants’ recollection (16). Family members’ interviews were conducted via telephone or in person and lasted 30 to 60 minutes. A semistructured interview guide that paralleled the participants’ guide but asked about family members’ perspective was used.
Characteristics of Participants and Pathways
Research assistants extracted information from RAISE Connection records to collect information on participants’ demographic characteristics, onset of psychosis (the month and year of onset of psychotic symptoms were defined via the Structured Clinical Interview for DSM-5–Research Version), date of entry into RAISE Connection, type of help-seeking contacts, and use of substances. We calculated three duration measures (in months): onset of psychosis to first professional contact, first professional contact to entry into RAISE Connection, and onset of psychosis to entry into RAISE Connection. Reports outside this period (for example, before onset) were excluded from the analysis.
Data Analysis
Extracted data were analyzed with SPSS software. Qualitative data were analyzed by using grounded theory (17) and a case study methodology (18) to identify factors that expedited or delayed entry into RAISE Connection. A grounded model emerged from our data depicting factors that shaped help-seeking decisions and either shortened or lengthened pathways to care. Atlas.ti was used to code all qualitative data. We quantified the presence (yes or no) of key themes in each participant’s pathways to care to examine their salience in our sample. Comparisons of the presence of key themes between participants whose family members were and were not interviewed revealed no differences between these groups (results available on request). The themes in our model were present regardless of whether family members were interviewed. The final model was derived via consensus after feedback was received from study investigators, consultants, and stakeholders. We used established strategies (for example, team debriefing meetings) to ensure the trustworthiness of our analysis (19).
Results
Sample
Of the 20 participants, nine were women, 11 were Hispanic, five were African American, two were non-Hispanic white, and two were Asian (Table 1). Participants’ average age at the interview was 23.7. Average age at onset was 20.6, and average age at entry into RAISE Connection was 21.3. Of the ten family members, eight were women and mothers of the RAISE Connection participants.
| Characteristic | N | % |
|---|---|---|
| Participant | ||
| Gender | ||
| Female | 9 | 45 |
| Male | 11 | 55 |
| Race-ethnicity | ||
| Hispanic | 11 | 55 |
| African American | 5 | 25 |
| Non-Hispanic white | 2 | 10 |
| Asian | 2 | 10 |
| Age (M±SD) | ||
| Age at interview | 23.7±4.4 | |
| Age at onset | 20.6±4.1 | |
| Age at entry to RAISE Connection | 21.3±4.2 | |
| Primary care provider contact | ||
| No | 14 | 70 |
| Yes | 6 | 30 |
| First contact with emergency servicesb | ||
| No | 11 | 55 |
| Yes | 9 | 45 |
| Substance use | ||
| No | 12 | 60 |
| Yes | 8 | 40 |
| Family member | ||
| Gender | ||
| Female | 8 | 80 |
| Male | 2 | 20 |
| Relationship to client | ||
| Mother | 8 | 80 |
| Brother | 2 | 20 |
TABLE 1. Characteristics of participant in an EIS for first-episode psychosis (N=20) and their family members (N=10)a
Pathways to Care Characteristics
Median duration between onset of psychosis and entry into RAISE Connection was 4.5 months. [A figure presenting details about the pathways to care is available in an online supplement to this article.] Median duration between onset and first professional contact was one month and between first professional contact and entry into RAISE was three months. Median number of professional contacts between onset and entry into RAISE was five. First professional contacts included primary care providers (N=4, 20%), schools (N=4, 20%), emergency medical technicians (for example, ambulance services) (N=4, 20%), emergency rooms (N=4, 20%), outpatient mental health providers (N=2, 10%), and police (N=1, 5%). Between onset of psychosis and entry into RAISE, 19 (95%) participants had at least one psychiatric hospitalization, 17 (85%) visited an outpatient mental health provider, six (30%) visited primary care, and five (25%) had contact with police. All participants were referred to RAISE by a provider (for example, a social worker).
Pathways-to-Care Model
The model presented in Figure 1 illustrates how a series of factors at the family-client and health care system levels shaped help-seeking decisions and either shortened or lengthened pathways to care. Quotes from participants and their family members that illustrate these decisions are presented in Table 2.
FIGURE 1. Pathways to care for individuals experiencing a first episode of psychosis (FEP)
| Factor | Quotes |
|---|---|
| Client and family factor | |
| Attribution of symptoms | |
| Participant A | “Everything that happened she [referring to mother] took it back to the weed. . . . She felt like, ‘Oh it’s the weed that’s making you. . . be aggravated. It’s the weed that is making you lazy.’” |
| Participant Q | “Interviewer: “What do you think it was about that day that you ended up telling her [participant’s cousin] then?” Participant: “I guess I just couldn’t hide it or, you know, any further. Because I was having kind of like spasms or whatever. . . . It was just like, you know, like my head would turn on its own or whatever or—I just can’t, I just couldn’t keep still.” Interviewer: “And was this something that you were trying to hide at the time?” Participant: “I was trying to handle it, I guess. I mean, I went to work every day or whatever, so you know.” Interviewer: “Can you tell me a little bit about how that conversation with your cousin started?” Participant: “I’m not even sure. I guess I was just tired of just trying to handle it myself, so I decided to tell her, which is the opposite of what the voices were saying to do. It just, I just felt kind of liberating not constantly listening to what other people think or whatever.” |
| Participant L | “I wanted to go find somebody to help me. Obviously, church wasn’t doing it. Weed wasn’t. My friends, my family couldn’t really help. So I felt, medical—why not?” |
| Self-reliance | |
| Participant E | “I felt hopeless about what I was going through. I was, you know, like I said, I felt like no one had an answer to it. So I didn’t really mention it to my friends at that point.” |
| Participant J | “I stopped seeing him [referring to psychiatrist] cause I was doing better.” |
| Participant C | “I guess because I got better so that’s why mom didn’t give it [referring to psychiatric medications] to me again.” |
| Stigma | |
| Participant M | “The first doctor I went to was actually my family doctor, and he actually gave me some Risperdal. . . . It was actually a low dosage, and it worked for me, but my parents took the medicine away. I took it, like, once or twice, and my parents took the medicine away, and they hid it so I couldn’t take it |
| Participant O | “So I went there [referring to psychiatrist], and he heard me talking, and he was like, ‘You need to take Zyprexa to organize your thoughts.’ So he gave me a prescription, and I said, ‘I’ll try it out.’ My mom said, ‘No, don’t do it, it’s going to mess with your brain.’” |
| Participant L | “I wasn’t big on medication period for myself. But to me it was more of a stigma thing. I was like, that solidifies it that I have mental health issues. Well, at that point, that’s what I felt like. That’s it, I take that pill—boom—from there on someone with a mental health issue.” |
| Health care system factor | |
| Interpersonal connections | |
| Positive | |
| Participant I | “The doctors were nice and friendly, and that just helped me through the whole time. . . . I didn’t really have a grasp on anything, so they just felt that I just needed a little bit of help. . . . We just had good conversations, and, you know, they just described what I was going through, and we were just able to make it just a good experience. I mean it was a bad experience, but they were able to make it better than it was.” |
| Participant M | “What was helpful was the doctor listening to me and helping me change my medicine when it wasn’t correct, and that was extremely helpful. Like, if I was on a medicine like Abilify or something like that . . . I couldn’t take it. I was getting like, I don’t know, like restlessness. . . . Sometimes stuff like that—just basically listening to me and just taking, like, making little changes, alter my medicine—that was extremely helpful.” |
| Negative | |
| Participant P | “Oh, I remember meeting with the doctor, and it was just—it was a bad experience. He brought, like, a book, like this: ‘Okay we’re going to go through this.’ And opened it and started asking me questions, like 500 questions from this book. I was like, ‘Jeez, this sucks.’” Interviewer: “What type of questions was he . . . ?” Participant: “Like simple . . . sort of like, you know, I guess it’s procedure, due diligence, but it was so tedious. I don’t know. It just seemed like the whole vibe of the place seemed detached.” |
| Participant A | “I didn’t like that doctor. I . . . just thought maybe it would have been better if they talked about it separately [referring to doctor and parents] and came out with a plan, as opposed to, like, working out the plan in front of me and maybe feeling anxious about whether I’m going to leave or not.” |
| Participant B’s mother | “That’s the only doctor that I didn’t like, because that medication he gave. . . . No, he went in the room with him, the doctor, the psychiatrist. I said, ‘Can I go with him because I need to tell you everything?’ Like I say to every doctor, ‘I need to tell you everything I see because maybe he [referring to her son] don’t know.’ So they told me no, because he’s that age, he have to be by himself. I say, ‘Okay, fine.’ So I let him go in. He never let me talk to him, he never let me talk to, you know, the doctor. Yeah, so the doctor like he didn’t give me no chance to talk to him. I say, ‘So why you give him medication if you don’t know really what’s going on?’ They think that every person that go with some problems there that they have to give them a medication.” |
| Quality of care | |
| High | |
| Participant M | “And then they kept me. They went in the hospital, and they kept me in a room. I didn’t know what was going to happen, but, thank God, they finally . . . the nurse told me I might have schizophrenia. And I talked to the doctor, and I talked to the nurse, and she said I might have schizophrenia. I was really happy and relieved to find out that that was my problem, because up to that point I was totally oblivious to my illness. I thought the whole world was going to end.” Interviewer: “So when the nurse told you that you might have schizophrenia were you familiar with what schizophrenia was at that point?” Participant: “I wasn’t very familiar, but I knew about it—it was like hallucinations and stuff like that. So I thought, ‘Oh yeah, that might be true.’ And the more they talked about it, the more it made sense to me.” |
| Participant J’s mother | “I think he saw him [referring to a private psychiatrist recommended by a friend] once, and then he sort of had this very paternal conversation with us, ‘Your son is very ill, you’re going to have a very long road ahead.’ And he sort of broke it down. He was like, ‘I can help you personally, but I can’t really help you long-term. You really need to think about . . .’ And he was the one who introduced the idea of going to that specialized hospital upstate, which ended up being a positive experience. . . . So he was highly skilled, it was no joke, it wasn’t like your run-of-the-mill doctor. Like he really, he didn’t play around with telling us what he thought we needed to hear.” |
| Participant B’s sibling | “The attention he got in the hospital in all that time, it was excellent. I mean, it took a while for him to come back. Because he was like—when he was in the hospital—he was, like, he knows who I was but he was, like, I was nobody, you know. . . . Being in the hospital, you know, I used to come and see him and my mother, and he was, like, nothing, he was, like, calm. But I think it was because of the medication, because day by day he was getting better and better and talking to people and asking already, you know.” |
| Low | |
| Participant S | Interviewer: “What do you think the psychiatrist could have done differently that would have been helpful?” Participant: “Like, ‘Hi, these are the side effects of everything. . . .’ which she kind of glossed over everything. She was like, ‘Yeah, sometimes on Risperdal you can gain weight.’ And then when I got to the Connection program, [the doctor] was like, ‘Do you understand that your BMI is over like it needs to be?’ Because I gained 50 pounds on the Risperdal. She’s like, ‘Look let’s tone down the medication.’ That’s what I wished they’d done.” |
| Participant P’s mother | “That place, I think, put [participant] into a bigger depression because of the way the other patients were treating him and in the way he was treated, like he was homeless or something like that. I didn’t like the way they treat him there. I think they was getting the problem deeper for him, and they didn’t give him those right medications, they didn’t do the right evaluation for him to be treated.” Interviewer: “So he wasn’t given the right evaluation or medications?” Participant’s mother: “No, no, I don’t think so because he comes out worse than when he was there. Because at least he was talking about being a millionaire, that’s it. But then he come out traumatized from that place.” |
| Participant P | “When I was in [psychiatric hospital], I was telling my mom and my grandmother to get me out of here. I hated here. It was the worse. It’s the worse hospital.” Interviewer: “What’s the worst about it?” Participant: “The way they treat their patients and everything. It’s just like a jail . . . patients was fighting all of the time. I was fighting. Then they would just put me into a room where it’s like a cushioned room. They’d just leave me there. I was like, ‘Get me out of here.’” |
| Family involvement | |
| Positive | |
| Participant R | Interviewer: “Anyone that you thought was especially helpful?” Participant: “The doctor, I forgot her name.” Interviewer: “What kind of stuff did she do that was helpful?” Participant: “Well, she would talk to my parents about what was going on. . . . They just spoke. . . . Yeah, ‘cause she would inform them about what was going on.” Interviewer: “What kind of stuff would she tell them about?” Participant: “Well, she would ask me before they would meet about what am I hearing and stuff like that. I was still hearing voices, though, so she recommended me to a new medicine—I don’t remember the name. And then she would say the same thing to my mom what’s going on.” |
| Negative | |
| Participant A | Participant: “I mean, it was confusing at the time because I couldn’t figure out why my mom wasn’t there. My family didn’t go up until like four days or five days after. . . . The main thing was more—I think the doctors told her that it was best that I didn’t see anybody.” |
| Participant B’s mother | Interviewer: “The psychiatrist and the therapist, what do you think they could have done differently to be more helpful?” Participant’s mother: “One, they could have talked to me—they never talk to me. You see, they never came, ‘Okay I see him, let me bring you in and talk to me and see what I say to him.’ Because, I say, maybe my son he didn’t say much to him, so you don’t have an idea exactly what it is for you to give me a medication.” |
| Care transitions | |
| Coordinated care | |
| Participant S | “[My social worker] was the gateway to everything at Connection [program]. . . . She did some next-level research, ‘cause I never heard about such a thing before. She was like, ‘Look, they’ll take you ‘cause you’re [within the age range]. They have all these components.’ She did a lot of work for me, and I really was appreciative. And she made me feel a lot better, cause she was like, ‘Look we’re a small program but . . .they’re the best of the best.’” |
| Participant R | Interviewer: “So what was going on in [month]?” Participant: “So in [month] I started hearing voices. I thought it was an angel calling me. So my mom decided to take me to the hospital. And in the hospital I was admitted for like a month and a half. And I was getting medicine. I think it was Risperdal or something. And yeah, I got hospitalized for a month and a half, and then I came out, and then they found a day program for me. It was in the hospital. . . . So I did a day program for six weeks. And after those six weeks, I went to [another outpatient program], and . . . I was seeing a doctor. I was telling him my problems that occurred in [year]. So I saw him for like a month and around there, and he recommended the Connection program. So when he recommended the Connection program, I went.” |
| Fragmented care | |
| Participant P | “That’s another thing . . . the hospital just left me by myself. I went home, I was still sick. I don’t think I had any medication.” |
TABLE 2. Factors that lengthened or shortened the pathway to care, according to participants in an early intervention service for first-episode psychosis and their family members
Client–Family Member Factors
Participants and family members described how attributions of symptoms, stigma, and self-reliance influenced help-seeking decisions. Each factor started during the emergence of psychotic symptoms and continued past the first help-seeking contact, thus affecting the entire pathway to EIS.
Attribution of symptoms.
How participants and family members made sense of the symptoms of psychosis affected their reactions to these experiences and subsequent help-seeking decisions. Most families and participants (N=15, 75%) reported experiencing misattribution or an uncertain attribution of symptoms. For some, psychosis was attributed to other causes, such as drug use. For others, there was uncertainty about the cause, but they noticed that something was not right. Others described how at first they did not think that the symptoms were related to a mental illness that required professional treatment. Some talked about thinking that the symptoms were part of “teenage issues,” and some did not feel that the symptoms were “going to become that big.” These attribution struggles seemed to be more common among participants who had a gradual onset of symptoms that were difficult to differentiate from other situations, such as “not feeling like one self.” These unclear experiences eventually reached a tipping point in which symptoms could no longer be ignored and help was sought.
Self-reliance.
Related to misattribution was a tendency toward self-reliance in coping with psychosis, which was mentioned by nine participants (45%) in our sample. Self-reliance was defined as not telling anyone what was happening and trying to solve problems on one’s own. This was often driven by uncertainty about what the person was experiencing, hopelessness about whether others could help, distrust of providers, and dissatisfaction with treatment. Some family members exemplified self-reliance with efforts to provide care themselves without seeking professional help. Self-reliance also affected engagement in treatment along the pathway to EIS entry; participants described times when they stopped taking medications or seeing providers because they felt that they could handle their symptoms without treatment.
Stigma.
Stigma regarding mental illness and treatments, reported by 12 participants (60%), played an important role in help-seeking decisions and delays in care. Fears and misapprehensions about psychiatric treatments negatively affected participants’ and family members’ decisions to seek and remain in mental health care. Some participants talked about how family members expressed disapproval of needing or taking psychiatric medications, which caused ambiguity about whether the participant should adhere to the doctor’s recommendations. Stigma also affected delays in care through label avoidance; some participants refused to take medications to avoid being labeled as mentally ill.
Cloud of uncertainty.
The factors described above formed a cloud of uncertainty shaping interpretations and decisions to seek and remain in care. This uncertainty clouded two aspects of the help-seeking process: initial decisions to seek professional care and ongoing decisions to remain in mental health care until entry into RAISE Connection. Lack of knowledge and awareness about the symptoms, causes, and severity of psychosis contributed to this uncertainty by affecting recognition of initial symptoms and exacerbated the ambivalence surrounding how participants and family members made sense of and reacted to psychosis. The nature of psychosis, especially if it was a gradual onset that was not overtly noticed by others and did not dramatically disrupt participants’ everyday functioning, complicated efforts to disclose symptoms and created doubts about where and when to seek professional help until symptoms became disruptive enough that help was sought.
The cloud of uncertainty extended beyond the recognition of psychosis and affected participants’ and family members’ help-seeking decisions throughout their entire pathways to care. Contacts with the mental health care system interacted with this cloud of uncertainty. Without a clear grasp of what to expect from treatment, how treatment should progress, and what high-quality mental health care should look like, this cloud of uncertainty complicated help-seeking decisions beyond the first help-seeking contact. This uncertainty, if not clarified by providers, resulted in unrealistic treatment expectations among participants and family members (for example, an expectation that medications would quickly eliminate symptoms of psychosis), as well as reported confusion, dissatisfaction, and frustration with care. The uncertainty could precipitate disengagement from care.
Health Care Factors
The nature and quality of contact with the health care system either dissipated or exacerbated the cloud of uncertainty.
Interpersonal connections.
Eighteen (90%) participants reported that the interpersonal connections that they made with providers affected pathways to care. Positive connections led to treatment engagement by enhancing trust and reassurance, providing emotional and informational support, and encouraging open communication and shared decision making. Negative connections delayed care because they lacked open communication and clear information, which resulted in uncertainty. Negative connections were marked by instances in which participants and family members felt unheard or disrespected by providers.
Quality of care.
Perceived quality of mental health care shaped pathways to care and was discussed by 19 (95%) participants. High quality of care was described as the provision of accurate diagnostic information, positive experiences in which participants and family members were involved in treatment decisions, alleviation of participants’ symptoms, and restoration of functioning. High quality of care resulted in engaging participants in treatment before they entered EIS. Examples of low quality included episodes in which participants and family members did not receive clear information about treatment options and side effects or did not get any mental health care or referrals from providers. Low quality of care included being treated poorly, not receiving appropriate evaluations and medications, and feeling trapped and traumatized by these experiences.
Family involvement.
The way in which family members were involved in participants’ treatment was an important factor in the pathways to care and was mentioned by 16 (80%) participants. Positive family involvement included being informed by providers about participants’ progress and treatment decisions. Negative involvement resulted in family members feeling alienated by providers who did not ask for their input and excluded them from treatment.
Care transitions.
The transitions between settings, particularly from inpatient to outpatient care, affected connections to treatment and were discussed by all participants. Across all settings (for example, schools and outpatient clinics), coordinated transitions were instances in which participants experienced positive services and referrals that facilitated their connections to mental health treatments in their pathway to care. Fragmented transitions were characterized as not receiving care coordination support and having unclear options for follow-up care.
Discussion
We identified factors that shaped pathways to care of individuals experiencing FEP and entering EIS and their family members. Few studies, particularly in the United States, have examined these pathways to care. Consistent with previous studies of pathways to care for FEP, the most common first contacts were with primary care, emergency services, schools, and emergency rooms (9,10,20–22). Three main barriers inhibited initial help seeking in the period between onset of psychosis and first help-seeking contact: misattribution of symptoms, stigma, and self-reliance. These obstacles are consistent with findings from qualitative studies (8,13) and contributed to the cloud of uncertainty in our model, which led participants to question what was happening, who and when to tell, and when to seek help. Because these barriers are present prior to the first help-seeking contacts, our findings support the use of public education campaigns—such as TIPS, the national campaign for antistigma in Denmark—to reduce delays in seeking care for FEP. Our model suggests that information campaigns should focus on increasing knowledge of psychosis to reduce misattribution of symptoms, on reducing stigma regarding mental illness and treatments, and on presenting coping strategies to lessen self-reliance and increase help-seeking behaviors.
Some individuals may value self-reliance to the extent that they do not seek help until hospitalization is imminent. Therefore, less self-reliance and earlier help seeking are needed. Self-reliance can negatively affect the use of mental health services, particularly among some Latinos (23). Cultural factors and developmental stages often lead young adults to place a high value on individual autonomy, and messaging to this population should note circumstances, such as experiencing FEP, when seeking help can augment self-reliance. Because self-reliance operates throughout the pathway to care, clinicians should assess how it affects the likelihood that clients and family members follow up with care and should help them understand that seeking care is part of self-care.
Several factors related to the health care system were critical junctures in participants’ pathways to care as they interacted with the cloud of uncertainty. These factors shortened or lengthened pathways to care. Clients and families experiencing FEP often faced uncertainty about illness and prognosis, which was compounded when their first contact with providers was negative. A caring, respectful, and inclusive clinical approach is vital for engaging individuals in care. Providers aiming to increase the therapeutic alliance can benefit from training in person-centered care, a central quality-of-care dimension (24). Shared decision making can help providers address recovery goals when designing mutually agreeable treatment plans (25,26). Providers can utilize the RAISE coordinated specialty care training materials to learn more about person-centered care, recovery-oriented language, and shared decision making to facilitate better interpersonal connections with clients and their families. These materials, including webinars, guides, manuals, and program resources, are publicly available on the RAISE Web site (https://www.nimh.nih.gov/health/topics/schizophrenia/raise/state-health-administrators-and-clinics.shtml).
Consistent with previous studies, our study found that poor quality of care prolonged pathways to care (8,13). Correctly diagnosing FEP is challenging, especially for clinicians who do not serve large numbers of clients with psychosis. Diagnosis may be difficult for primary care providers given the relatively low rate of psychosis in their practices, the complexity of differentiating psychosis from common mental disorders, and the reluctance to diagnose psychosis given its long-term implications (27). Improving quality of care requires enhancing clinicians’ skills and comfort with psychosis. Beyond diagnosis, many clinicians lack knowledge about appropriate prescribing for FEP and the benefits of EIS. One consequence of programs such as RAISE Connection is the opportunity to educate clinicians about these services.
The importance of families in treatment engagement is well established (28). Family members, primarily parents and siblings, are key help-seeking drivers (8). Providers should not alienate family members because doing so prolongs pathways to care by increasing family members’ sense of uncertainty and disengagement from care. Our findings illustrate the importance of involving families in strategies to shorten entry into EIS by improving their recognition of psychosis, increasing their knowledge of appropriate treatments, and reducing stigma.
Care transitions influence pathways to care by expediting connections with appropriate services or by delaying referrals. Efforts to improve care transitions are essential for people experiencing FEP given their contact with multiple settings and the fragmentation of the mental health care system (29). Care transitions for FEP should focus on clear protocols for the identification, referral, and coordination of care and promote the sharing of information between providers, clients, and family members.
This study had several limitations. We used a convenience sample that included racially and ethnically diverse clients and family members who participated in one EIS program in New York City. Our participants’ pathways to care may be unique to this group and setting. Potential limiting factors may limit generalizability, including demographic differences, the temporal aspect of when the study occurred relative to the availability of RAISE Connection, and the pattern of prior service utilization favoring hospitals. More studies should examine pathways to care of individuals and families experiencing FEP who do not reach EIS or who seek EIS in other locations. Participants’ recollection bias may have played a role in our study given that we used retrospective data. To reduce this bias, data were triangulated from service records, qualitative interviews, and a visual timeline tool to facilitate recollection. Ten family members of the 20 participants agreed and were interviewed for this study. This relatively low rate may have resulted from our recruitment procedures, in which participants were asked to nominate and provide permission for research staff to invite family members into the study and for family members to provide permission to be contacted by research staff. A more direct recruitment approach may have yielded better participation by family members. We do not claim to have identified factors that have a direct impact on the duration of untreated psychosis. Rather, we focused on decisions to pursue care that may eventually lead to EIS, depending on the service environment and the accessibility of EIS.
Conclusions
Our grounded model suggests testable hypotheses and intervention targets for shortening pathways to care to EIS that can be examined in future studies. Reducing the uncertainty that individuals with FEP and their family members face when seeking care because of the misattribution of symptoms, stigma, and self-reliance can help decrease delays in care. Health care factors are critical junctures in pathways to care for FEP. Enhancing providers’ skills in encouraging individuals with FEP to seek and remain in care may be an efficient route to shorten pathways to EIS for FEP.
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