Abstract
Background : Despite growing evidence that clinical gains are lost when clients transition back to care as usual, typical coordinated specialty care programs (CSCs) continue to be limited to 2-3 years. This qualitative paper aims to explore the experiences of first episode psychosis clients within a CSC clinic that retains clients beyond the standard 2-3 years. Methods : The authors conducted qualitative interviews with ten clients who engaged with the clinic for three or more years. The guiding research question was; what motivates clients to remain engaged with CSC beyond the typical 2–3-year treatment period? Results: Five main themes emerged from qualitative thematic analysis: symptom improvement, recovery as a process, supportive staff, trusting relationships, and individualized care. Results demonstrate preliminary evidence on the benefits of prolonged engagement in first episode psychosis care. Discission : The emergent themes from the qualitative analysis provide insight into clients’ experiences of team based first episode psychosis care beyond 2-3 years. Given the value placed on continuity of care and meaningful therapeutic alliances, we must consider how established timeframes for first episode psychosis programs may negatively impact the overarching goal of sustaining gains long term. Perspectives from those living the experience of first episode psychosis treatment are important to inform standards of care.
Engagement in Coordinated Specialty Care for First Episode Psychosis: Client Perspectives Beyond Three Years
Authors:
Ashley Weiss, DO, MPH
Tulane University School of Medicine
Department of Psychiatry
Serena Chaudhry, MPH, LCSW
Tulane University School of Medicine
Department of Psychiatry
Ariana OShea Banes, LCSW
Tulane University School of Social Work
Hannah Mercier, MD
Medical College of Wisconsin
Robert Roy, MS
University of Nebraska
Department of Psychology
Ramin Mojtabai, MD, PhD
Tulane University School of Medicine
Department of Psychiatry
Tonya Cross Hansel, PhD, LMSW
University of Texas at Arlington
School of Social Work
Jenneva Barrett, LCSW
Tulane University School of Social Work
Patricia Hawley, LCSW-BACS
Tulane University School of Medicine
Department of Psychiatry
Abstract
Background : Despite growing evidence that clinical gains are lost when clients transition back to care as usual, typical coordinated specialty care programs (CSCs) continue to be limited to 2-3 years. This qualitative paper aims to explore the experiences of first episode psychosis clients within a CSC clinic that retains clients beyond the standard 2-3 years.
Methods
The authors conducted qualitative interviews with ten clients who engaged with the clinic for three or more years. The guiding research question was; what motivates clients to remain engaged with CSC beyond the typical 2–3-year treatment period?
Results
Five main themes emerged from qualitative thematic analysis: symptom improvement, recovery as a process, supportive staff, trusting relationships, and individualized care. Results demonstrate preliminary evidence on the benefits of prolonged engagement in first episode psychosis care.
Discission : The emergent themes from the qualitative analysis provide insight into clients’ experiences of team based first episode psychosis care beyond 2-3 years. Given the value placed on continuity of care and meaningful therapeutic alliances, we must consider how established timeframes for first episode psychosis programs may negatively impact the overarching goal of sustaining gains long term. Perspectives from those living the experience of first episode psychosis treatment are important to inform standards of care.
Keywords
psychosis , qualitative, thematic analysis, engagement, continuity of care, recovery
Engagement in Coordinated Specialty Care for First Episode Psychosis: Client Perspectives Beyond Three Years
According to the critical theory hypothesis, the early phase of psychosis is the most important in determining the long-term effects of the episode, and engagement in treatment is vital for promoting a better outcome (Birchwood et al., 1998). The Recovery After an Initial Schizophrenia Episode (RAISE) trial demonstrated the feasibility and efficacy of a team-based model of care for early psychosis, referred to as Coordinated Specialty Care (CSC).
First person accounts of CSC are a growing part of the literature. Findings from patients engaged in 35 of the United States’ CSC programs, show that patients perceive a greater number of changes the longer they receive CSC services (Dalet et al., 2020). Perceived changes included improved psychiatric symptoms, social and interpersonal skills, and changes in perspectives on life. In this study, therapy was commonly identified as the mechanism underlying patient improvement.
Evidence is mounting that once a person is discharged from an FEP program, gains are lost; at 5 years, effects of intense early-intervention programming were not sustainable (Bertelsen, 2008), at 10 years most of the positive short-term effects of FEP programs had diminished or vanished (Secher et al, 2015), and at 20 years no difference between 2 years of intense early intervention programming vs treatment as usual were found (Hansen, 2023). This is a concerning finding given the fundamental mission of this work is to change the long-term trajectory of those with emerging mental illness (Kane, 2015).
The [REMOVED FOR BLIND REVIEW] Clinic in [REMOVED FOR BLIND REVIEW], is a CSC program that deviates from the standard CSC model by providing care beyond the typical 2-3 years time-frame. Instead of discharging patients, the individual’s treatment plan evolves over time to meet changing needs. Given the risk of losing gains after discharge from CSC programs, it is important to consider extension of care. This study aims to provide client perspectives on how treatment beyond 3 years has impacted their healing journey.
Method
Client perspectives of treatment beyond the 3 years were explored through qualitative methods. We conducted client interviews and used qualitative thematic analysis to explore patient’s perspectives when engaged in care beyond 3 years.
Recruitment and Inclusion Criteria
Inclusion criteria for study participants were: (1) receiving treatment at [REMOVED FOR BLIND REVIEW], (2) between 12 and 35 years-old when treatment began (3) experiencing psychosis for less than 3 years before treatment began, (4) engaged in CSC for 3 or more years.
Participants were identified and consented using a systematic approach and a common script (Appendix A). 10 of the 32 clients consented (Figure 1). [Insert Figure 1. PRISMA Flowchart for client recruitment ] and ethical approval was obtained from Tulane University Institutional Review Board (Study 2021-1950-OTH).
Clients were contacted and provided verbal consent to be interviewed by a Master of Social Work intern and a medical student at the clinic. Interviews were also conducted by these non-clinical team members to avoid participant social-desirability bias. Contact followed a set pattern: on the initial call, researchers read from a script (Appendix A) to determine participant interest and participants were able to verbally consent. If the participant was not interested, contact was terminated. Researchers left a voicemail if prospective participants could not be reached on the first call. If there was still no response, researchers sent a text message containing information about the study that asked if the prospective participant would like to hear more via a phone call. If there was no response, researchers called the prospective participant a final time. If a prospective participant did not respond to the researchers after the third contact attempt, recruitment attempts were terminated. In total, 10 of the 32 clients consented (Figure 1). There was only 1 participant who declined to participate, the remaining could not be reached during this pattern of attempts
Interviews
Prior to initiation of the interview, participants were asked for verbal permission to record the interview so researchers could transcribe the dialogue for the purpose of identifying trends in client experiences. If they agreed, the interview proceeded. If not, they were given the option of the interviewer using manual transcription. If they did not consent to either of these options, the interview did not take place. Two participants did not consent to recording, so manual transcription of the interview took place.
Interviews using standardized questions, probes, and prompts (Table 1) were conducted over a HIPAA compliant Zoom meeting. Participants were encouraged to take their time answering questions and were informed that at any time they could decline to answer, ask for clarification, or terminate the interview.
Coding Transcripts
Transcribed de-identified interviews were entered into Excel. Sentences were separated into clusters, and each given a descriptive code. Examples of descriptive codes include: “easy to connect with staff” and “improved self-esteem”. A qualitative thematic analysis was used to derive themes based on the descriptive codes. Researchers engaged in triangulation and used an audit trail to come to consensus on emergent themes.
The coding process involved inputting transcribed interviews into an Excel document and separating each sentence into their own cell. Client confidentiality was maintained by removing all identifying information such as names or date of birth from the transcript. If multiple sequential sentences formed one uniform idea, then they were included together in a cluster. Then, each sentence or sentence cluster was described based on the content using a descriptive code. Examples of descriptive codes include: “understanding emotions and developing coping skills”, “finding a support network of others in a similar situation”, “easy to connect with staff”, “improved self-esteem”, and “moving forward and accepting what has happened in life”. These examples are a small portion of the descriptive codes that emerged during the coding process. A qualitative thematic analysis was used to derive themes based on the descriptive codes that arose during the coding process. A theme was defined as a concept that encompassed the topics of several descriptive codes. This was accomplished by reviewing all codes that emerged and determining broad thematic categories that encompassed the descriptive codes. A third medical student reviewed codes and themes for consistency. The primary author and Clinical Director reviewed the themes to ensure coding integrity.
Results
Demographics of the 10 participants interviewed are summarized in Table 2. Participants received care at [REMOVED FOR BLIND REVIEW] between three to five years with an average of 3.7 years.
[Insert Table 2. Sociodemographic background of study participants]
Five main themes emerged from qualitative thematic analysis : symptom improvement, recovery as a process, supportive staff, trusting relationships, and individualized care .
Symptom improvement
All participants (10/10) endorsed improvements in their symptoms after starting treatment at [REMOVED FOR BLIND REVIEW]. The theme of symptom improvement represents a client describing the experience of symptomatic improvement including but not limited to anxiety, depression, concentration, and stress. For example, one participant said: “One on one counseling has really helped with maintaining low anxiety and stress as well as not many depressive feelings.” Another said: “I would say in the beginning it’s a little foggy because I was kind of still out of my mind in a way, but as I could remember moving through the program they gave me new insight on medicine…they gave me the confidence that this would help me through my situation (Psychosis) and it did.” A third said: “I have a lot of personal life crisis and most of my therapy now has to do with these not psychosis. It’s depression and anxiety and they are always very supportive during the crisis.”
Recovery as a process
Most participants (9/10) endorsed seeing their recovery as a process. The theme of recovery as a process represents a client describing the process of recovery as an integral part of treatment and evolves over time. For example, one participant said: “Recovery for me… is how to reinsert oneself into a functional position in our society. I say a definitely functional position in our society because things from the day today are uncertain. Day-to-day life, especially now, is pretty uncertain. But there are certainties that stand out.” Another said: “I would have to say recovery is just overcoming that barrier, that is the invisible barrier… we have to overcome these things. So I think recovery for me is just being open minded, being more realistic with who you are and your specific situation so recovery overall is just acceptance of what is. And then with that acceptance comes other things that are innumerably measured, it’s. It’s unspeakable.” A third said: “How do I define recovery? I think recovery is about being able to move forward again. There is going to be bits and pieces that you’re going to have to take with you throughout your life, and there’s really nothing you can do about that. That’s part of being human. But I think recovery is just being willing to find help and maybe take a few steps forward.” Finally, a fourth said: “In the beginning, [I thought] it was just take some medication right now then be better, but now I see recovery as all this.”
Supportive staff
All participants (10/10) endorsed having support from staff. Participants used terms such as supportive, genuine, and empathetic. For example, a participant said: “It all starts with the staff…It’s all about who greets you at the door. The services you receive…the staff, it all works hand in hand.” Another said: “I’m very spiritual so I’m like, deep in their soul, you know they care for people.” A third said: “It’s like they are actually trying to encourage you, and give you circumstances to help you do better, and not just tell you to do better.”
Participants linked support from staff to their symptom improvement. For example, one participant said: “I would say in the beginning it’s a little foggy because I was kind of still out of my mind in a way, but as I could remember moving through the program they gave me new insight on medicine…they gave me the confidence that this would help me through my situation (psychosis) and it did.” Another participant said: “I have a lot of personal life crises and most of my therapy now has to do with these, not psychosis. It’s depression and anxiety and they are always very supportive during the crisis.” Most participants also endorsed functional and self-improvement. One participant said: “Well, for starters, I’m not at the hospital, that’s something. I think I’m getting better self-esteem. I feel like talking about it with these people have helped uplift me and help give me a better view of myself.”
Trusting relationships
Most participants (8/10) endorsed having trusting relationships with their clinician(s), further defined as reliable and secure. For example, one participant said: “My therapist and psychiatrist. We have good working friendly relationships and I can continue to rely on them medically.” Another said of their therapist: “It’s somebody that actually understands and gives me a different point of view to help me get out of the funk.”
Participants linked their trusting relationships with their clinician(s) to being able to adhere to treatment. For example, one participant said: “I guess like just going to the therapy sessions, and then just hearing my thoughts from another perspective. Being helped to organize my thoughts.” Another said: “It just, it lets me know that everything is alright and that it’s normal to feel the way I feel; having ups and downs and having bad days and good days. That it’s normal, and I shouldn’t get frustrated. I can’t, I shouldn’t give up because of one bad day.”
Individualized Care
All participants (10/10) endorsed receiving individualized care, which met the client’s personal needs. For example, one participant said: “My counselor has asked open-ended questions…Open-ended questions make me think about my life, and not only in a negative way.” Another said of their treatment: “They treat everyone with respect in regard to their diagnosis. Especially like on a person-to-person basis.” A third said: “I think it’s different because they actually take the time out to hear your individual needs.”
Receiving individualized care contributed to participants viewing the components of care as effective (including therapy, psychiatry, group therapy, wellness programs, and psychoeducation). For example, one participant said: “After I have a session it feels like I’ve been decompressed… Going into session, feeling as if everything around me is crumbling, you know? And after session everything being put in perspective.”
Having an individualized approach to care was also important in patients seeing their recovery as a process, where the treatment plan evolves over time. For example, one participant said: “Recovery for me… is how to reinsert oneself into a functional position in our society. I say a definitely functional position in our society because day-to-day life, especially now, is uncertain. But there are certainties that stand out.”
Discussion
This study has identified qualitative themes in client perspectives, illustrating ways clients engage and benefit from FEP treatment beyond 3 years of care. These themes support the consideration that gains may be maintained and even expanded upon through facilitating longer-term therapeutic relationships. Studies show that a strong therapeutic rapport can positively influence treatment engagement. Browne et al. (2019), Cowan et al. (2020), and Jansen et al. (2018) emphasize that early, supportive engagement is critical in achieving early psychosis intervention. When patients feel safe in their treatment environment, they are more likely to participate in treatment (Jansen et al., 2018).
Supportive staff was seen as the scaffolding for symptomatic and functional improvements. Studies show that fewer negative symptoms occur when the therapeutic alliance is stronger. From a symptom standpoint, comments from clients sampled specifically show that relief of anxiety and depression symptoms are integral to a sense of autonomy and capacity for day-to-day functioning. This finding suggests that continuity of care for FEP clients may contribute to further symptom alleviation beyond resolution of frank psychotic symptoms. Some participants endorsed a “fuzziness” of their memories during the first year or so of treatment and therefore, there is potential benefit from longer-term approaches to respect the unique recovery process each individual faces and address trauma related to the first episode of psychosis. Browne et al. (2021) noted that a stronger therapeutic relationship is associated with reduced hospitalizations and improved symptoms and overall functioning. Hasson-Ohayon et al. (2021) shared that when there is a poor therapeutic alliance, symptoms can also worsen in patients with psychosis.
Participants largely attributed their progression and functional improvements to continued support from their team. The concept of supporting clients past the 2–3-year standard allows for a unique depth of experience. Clients described this depth as helping shape their future and develop a sense of autonomy and clarity in day-to-day functioning, which fulfills an important goal of CSC.
Participants were attuned to the flexibility and individualized nature of the care they received. Tailoring care to the clients’ needs was what allowed them to feel respected and supported. Individualized care is critical while treating the FEP population as a client’s experience with psychosis is unique and individual in nature. Some services, such as art therapy or peer extracurricular groups, were utilized by clients after a period of stabilization, which may be several months or years after intake. Allowing clients to remain in the clinic longer would allow for autonomy and could lead to further integration into the clinic community, fostering peer support networks that could, in fact, support longer-term recovery.
Participants described their personal recovery journeys in many ways, often focusing on the evolution of what recovery was like. First, it was a straightforward process involving stabilization with medications, and as time went on, realizing the complexities of recovery necessary for reintegrating into society, reconnecting with who they are, and redefining their relationship with their illnesses. This process takes time; capping it at 2-3 years may end the journey prematurely, departing from the individualized care that is cultivated prior to the point of discharge.
All these themes have the common thread of rapport being critical to recovery. Studies indicate that stronger client-provider relationships are correlated with improved treatment outcomes (Browne et al., 2019). These relationships are individual and built over time; placing arbitrary time limits on them may hinder the very thing that helps their engagement and recovery. Participants described how genuine empathy, care, respect, and peer support shown by staff contributed to feeling supported, motivating them to continue returning to the clinic. These elements seem important and critical to continued engagement for the FEP population. Allowing clients to choose to remain in the clinic past the 2-3-year standard potentially enables these therapeutic relationships to continue strengthening.
Since this population is at serious risk of losing gains once discharged from CSC, and risks associated with prolonged illness are so significant, we believe there is an ethical dilemma that CSC providers face when imposing arbitrary time-limitations to CSC care. The patient perspective becomes critical in considering how we move forward.
Limitations
and Future Research
The major limitation, consistent with qualitative research, is the small sample and unclear generalizability. While the study provides initial insight into benefits of longer-term care, future research would be beneficial to understand perspectives from individuals that did not continue beyond the three years. Also absent from these qualitative interviews is the family perspective which would enrich our understanding of the process of recovery and is imperative to guiding progress of treatment standards. Another limitation is the use of virtual technology for the interviews and the inability to meet in person due to the COVID-19 pandemic. In-person interviews could have elicited more and different qualitative and thematic data including nonverbal cues from clients. Quantitative data are currently being analyzed to report on clinical and functional outcomes for those in treatment for 3+ years.
Conclusion
This qualitative analysis sheds light on the experience of those in FEP treatment for longer than 3 years. The main themes point to the value of the therapeutic relationship, continuity of care, and being seen as an individual, all of which should be considered in designing strategies to sustain initial gains among those in treatment in CSCs. We must focus on the part of FEP care that is working, further refine our approaches, and align funding streams with these findings to support patients across their lifespan. If CSC treatment is indeed aimed at changing the trajectory for those with severe mental illnesses, we must adapt our approaches to meet long-term needs and consider the possibility that the consistent therapeutic alliance is the most valuable part of recovery.
The author(s) received no financial support for the research, authorship, and/or publication of this article.
Conflict of Interest
The authors declare no conflict of interest.
References
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Kane, J. M., Schooler, N. R., Marcy, P., Correll, C. U., Brunette, M. F., Mueser, K. T., Rosenheck, R. A., Addington, J., Estroff, S. E., Robinson, J., Penn, D. L., & Robinson, D. G. (2015). The RAISE early treatment program for first-episode psychosis: background, rationale, and study design. The Journal of clinical psychiatry, 76 (3), 240–246.
Secher, R. G., Hjorthøj, C. R., Austin, S. F., Thorup, A., Jeppesen, P., Mors, O., & Nordentoft, M. (2015). Ten-year follow-up of the OPUS specialized early intervention trial for patients with a first episode of psychosis. Schizophrenia bulletin, 41 (3), 617–626.
Figure 1. PRISMA Flowchart for client recruitment.
Table 1
Interview Script
| Follow-up questions: | What makes [REMOVED FOR BLIND REVIEW] different from other clinics where you have been a client? | |
| Can you think of a specific area of your life that has improved since being at [REMOVED FOR BLIND REVIEW]? | ||
| What specific programs at [REMOVED FOR BLIND REVIEW] have you engaged in and which ones made the most difference? | ||
| Probe | Please tell me more…Please help me understand… give me an example… | |
| Prompt: | You mentioned X, can you elaborate? | |
| Can you explain what keeps you coming back to [REMOVED FOR BLIND REVIEW]? | ||
| Follow-up question: | What makes this different from other clinics you have been to? | |
| Probe: | Please tell me more…Please help me understand… give me an example. | |
| Prompt: | You mentioned X, has trust…familiarity…convenience…continuity…rapport…peer support played a role? | |
| Can you explain how you define recovery? | ||
| Follow-up questions: | Can you give an example of what recovery has looked like for you? | |
| What did you imagine recovery looking like? Feeling like? | ||
| In what ways does recovery look similar to what you imagined it looking like or feeling like? Different than it looking like or feeling like? | ||
| Probe: | You mentioned X, in which ways has that supported your recovery? | |
| Prompt: | Can you give me an example of a moment when realized things had changed and you were moving into recovery? What role has [REMOVED FOR BLIND REVIEW] played in your recovery? |
Table 2. Sociodemographic background of study participants
| Age | |||
| 22-24 | 2 | 20% | |
| 25-27 | 4 | 40% | |
| 28-30 | 3 | 30% | |
| 30+ | 1 | 10% | |
| Race | |||
| African American | 6 | 60% | |
| Caucasian | 3 | 30% | |
| Asian | 1 | 10% | |
| Gender | |||
| Female | 4 | 40 % | |
| Male | 6 | 60% | |
| Engagement | |||
| Client’s Engaged for 3 years or more | 7 | 70% | |
| Client’s Engaged for 4 years or more | 2 | 20% | |
| Client’s Engaged for 5 years or more | 1 | 10% | |
| Education | |||
| Highschool Diploma/GED | 1 | ||
| Some University | 5 | ||
| Bachelor’s Degree | 4 | ||
| Diagnosis | |||
| Schizophrenia | 6 | 60% | |
| Bipolar Disorder | 2 | 20% | |
| Major Depressive Disorder with Psychotic Features | 1 | 10% | |
| Unspecified Psychotic disorder | 1 | 10% | |
| Note. N = 10 |
Appendix A – Initial Phone Interview Script and Verbal Consent – Supplemental material for Engagement in Coordinated Specialty Care for First Episode Psychosis: Client Perspectives Beyond Three Years
Initial phone script : “Hello, my name is [ interviewer’s name ]. I am calling today on behalf of [REMOVED FOR BLIND REVIEW] to schedule a one-hour appointment with you to discuss your experience with [REMOVED FOR BLIND REVIEW] over the past many years. The clinic is planning to use the feedback you share (which will remain anonymous) for research purposes and to help the clinic grow and improve in the future.
1.
Are you interested in participating in the one-hour interview over ZOOM?
2.
When is a good day and time for us to speak?
3.
Because this will be used in part for research, I need to read you a consent form before we talk. Do you have a few more minutes now for me to read the consent form?
4.
Lastly, are you willing to have our interview recorded via Zoom? The purpose of the recording is for Zoom to transcribe the confidential conversation so that we can identify themes in feedback between different patients.”
Verbal consent: “You are being invited to participate in this study to look at whether a program treating individuals with first episode psychosis in [REMOVED FOR BLIND REVIEW] can achieve outcomes of similar programs. In order to decide if you would like to participate in the study, I will discuss its purpose, procedures, risk, benefits, and alternatives to entering this study. As I mentioned, the purpose of this study is to demonstrate the effectiveness of the [REMOVED FOR BLIND REVIEW] clinic and to look at how people get access to care at [REMOVED FOR BLIND REVIEW]. The procedures of the study include an interview about your symptoms, personal and social functioning, and experiences seeking and receiving care in an outpatient setting. These interviews will be conducted over Zoom and involve questionnaires administered by a trained research evaluator over the course of three occasions. These three interviews will happen within 1 year. If you choose to not participate in this study, it will have no effect on your current access to care for your illness. You can continue to be seen at this clinic. There is a very small possibility for risk or harm from participating in this study. The one possibility we foresee is that your confidential health information is made available in error to someone outside the research team. We have taken measures to prevent this by obtaining a certificate of confidentiality from the NIH to protect your private information. Your information cannot be shared or accessed. You will not directly benefit from this study, and you will not be paid to be in this study. At any point, you can take a break or stop completely, and it will not affect your ability to seek care at this clinic. Participating in this study has no effect on getting treatment at [REMOVED FOR BLIND REVIEW]. Do you have any questions for me?”
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Ashley Weiss, Serena Chaudhry, Ariana OShea Banes, et al.
Engagement in Coordinated Specialty Care for First Episode Psychosis: Client Perspectives Beyond Three Years. Authorea. 16 February 2026.
DOI: https://doi.org/10.22541/au.177122012.28671041/v1
DOI: https://doi.org/10.22541/au.177122012.28671041/v1
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