Understanding Pathways to Care of Individuals Entering a Specialized Early Intervention Service for First-Episode Psychosis
Abstract
Objective:
Methods:
Results:
Conclusions:
Methods
Recruitment
Qualitative Interviews
Characteristics of Participants and Pathways
Data Analysis
Results
Sample
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 |
Pathways to Care Characteristics
Pathways-to-Care Model
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.” |
Client–Family Member Factors
Attribution of symptoms.
Self-reliance.
Stigma.
Cloud of uncertainty.
Health Care Factors
Interpersonal connections.
Quality of care.
Family involvement.
Care transitions.
Discussion
Conclusions
Supplementary Material
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