First-Person Accounts of Change Among Young Adults Enrolled in Coordinated Specialty Care for First-Episode Psychosis

Coordinated specialty care (CSC) helps individuals who have experienced a recent onset of psychosis both manage symptoms and achieve key milestones in functional and social domains (1). CSC stresses a strong orientation toward supporting young people’s “personal recovery” (2), a construct encompassing a sense of connectedness, hope, and optimism; personal identity, meaning, and purpose; and psychological empowerment (3, 4). Most research on recovery from psychosis relies on standardized clinician-reported and self-reported measures (5). These tools can efficiently assess client perceptions of global change but are not designed to capture how clients believe services, such as CSC, may have had an impact on their life (i.e., the mechanism of change).

A handful of qualitative studies on recovery have explored client perceptions of the impact of early psychosis treatment programs. In one study, clients reported that such intervention increases insight and acceptance, promotes the ability to recognize early warning signs, improves communication and the ability to solve problems, and increases independence (6). Young men in a second study reported improvements in employment, social engagement, and symptoms as key changes since entering CSC (7). Qualitative studies have also explored young people’s understanding of recovery following first-episode psychosis (FEP). Salient aspects of recovery processes described in these studies include regaining agency and control (8, 9), rebuilding social relationships (10–12), having a greater appreciation for life (12, 13), possessing a sense of maturity (11, 12), and experiencing improvements in symptoms (8, 9).

This study expands the research literature on how individuals experiencing psychosis make sense of their condition. In contrast to existing qualitative studies that were drawn from a single clinic and limited in size, this study had 121 participants recruited from 35 programs across 22 U.S. states. This diverse sample appropriately reflected the heterogeneity of individuals with FEP in the United States and of the programs that serve them, and the large sample size enabled a more flexible analysis. In conducting this study, we sought to describe clients’ perceptions of how they had changed since entering a CSC program, what changes they perceived as most important, and what allowed these changes to take place.

Methods

Design, Sampling, and Procedure

Data in this study were collected as part of a larger mixed-methods study, the Mental Health Block Grant (MHBG) 10% Set-Aside Study, funded by the Substance Abuse and Mental Health Services Administration and the National Institute of Mental Health. The MHBG 10% Set-Aside Study evaluated the implementation and outcomes of CSC services across the United States, with a particular focus on 36 diverse clinical sites. Study sites were selected from CSC programs across the United States that were supported at least in part by MHBG funds, which are used by more than 200 programs (14). The sites were selected to ensure diverse representation from CSC models, regions, and settings. Thirty-one percent of the sites (N=11) were located in urban and suburban areas, 42% (N=15) in rural areas, and 28% (N=10) in a catchment area that included both. The most common model used was OnTrack (28%; N=10), followed by NAVIGATE (19%; N=7) and PIER (19%; N=7). For additional details regarding MHBG methods and sampling, see the online supplement to this article.

Recruitment, Sample, and Interview Procedures

Each study site was visited in the late winter/early spring of 2018 and again in early 2019. CSC team leads were asked to identify clients willing to participate in interviews during the day of the visit. To reduce burden, no specific requirements (e.g., client age, gender, or diagnosis) were imposed. A total of 121 clients (71 men and 50 women) participated in interviews across the two visits, representing 35 different CSC programs.

Participant interviews took place with no study site staff present and ranged from 20 to 60 minutes. Participants were first asked, “How would you say that things have changed for you since you started coming here to [program name],” followed by, “Of all the ways you may have changed, which of these is the most significant or important to you?” Participants were also asked to identify what they believed led to the changes. Subsequent discussion was open ended, and many participants elaborated on the context and nature of different areas of change. All interviews were audio recorded and professionally transcribed. Each individual received a $25 gift card for his or her participation, and all aspects of this study were reviewed and approved by the research ethics board of Westat.

Data Analysis

The first step in the data analysis was a review of the full interview transcript to identify all responses to the question about changes, which we coded by using the qualitative software program Dedoose, version 8.3.10 (15). After this step, following a directed content analysis approach (16), the first and second authors (T.C.D. and N.J.) systematically coded all relevant material with respect to change domain (e.g., improvement in symptoms); mechanism of change, if any (e.g., therapy or medications); and specification of a particular change domain as “most important.” The coders then assessed the consistency and reliability of the codes. On the basis of the review of all responses, the lead author (T.C.D.) grouped similar codes in higher-level categories; these categories were refined through an iterative process, leading to a final set of 16 change domains and 319 responses. A final reliability check was conducted with 25% (N=80) of the responses, yielding a high κ value (0.85). All discrepancies between coders were reconciled through discussion. Quantitative data were analyzed with SPSS, version 25 (17).

Results

Number of Changes

The 121 participants ranged in age from 14 to 35 years, with a mean age of 22.7 years, and reflected diverse racial backgrounds, with 71 participants (59%) identifying as nonwhite. The length of time in CSC at the time of the interview ranged from 1 month to 4 years (Table 1). Participants identified a greater number of distinct changes the longer they had received services (r=0.19, df=120, p=0.035), increasing from an average of 1.5 changes for those who had been in a CSC program for <6 months to an average of 3.5 changes for those who began a CSC program >30 months earlier (Table 2). One participant did not know how to respond, and five participants reported no changes. Among the participants reporting no changes, three of the five said no changes had taken place without further elaborating. One participant said that his parents would say that he is back to his usual self but that he felt that he had not been different in the first place. Another participant noted that he had stopped smoking and lost some weight but emphasized that he did not perceive any changes since starting the program, and he was not asked additional questions. Therefore, we excluded these six participants and focused on the data drawn from 115 individuals.

Type of Changes

We categorized specific areas of change into seven higher-order domains. The frequencies for these change domains are presented in Table 3 and illustrative quotes are given in Box 1. Across all responses, the most frequently mentioned improvement was a reduction in psychiatric symptoms and psychopathology (50%), followed by changes in social and interpersonal behavior, attitude and perspective, and treatment engagement and activation (all 39%) (Table 3). The type of changes that participants identified as the most important generally followed the same pattern (e.g., symptoms and psychopathology were identified as most important), although no single domain was referenced by more than one-third of the participants.

Symptomatology and psychopathology.

Fifty-eight participants (50%) reported improvement in overall psychopathology, and 32 (31%) identified improved symptoms as the most important area of change (Table 3). The single most prevalent area of change (41%; N=47) was reduction or amelioration of core symptoms of psychosis, encompassing delusions, paranoia, and auditory hallucinations as well as of negative symptoms and cognitive deficits that participants explicitly tied to psychosis. In some cases, participants described how their symptoms were either less frequent or less distressing, and others reported either total remission or the elimination of symptoms, such as the disappearance of all voices. Eighteen participants (16%) described improvements in secondary symptoms, including depression, anxiety, and aggression, and seven participants (6%) reported no longer engaging in self-harm or experiencing suicidal ideation. Not surprisingly, improvements in symptoms such as paranoia and hallucinations were often described in conjunction with feeling happier, less worried, and more relaxed.

Social and interpersonal.

Forty-five participants (39%) reported improvements in social functioning, spanning improved relationships with friends and family, strengthened relational skills (e.g., compassion and empathy for others), and increased socialization, including getting out of the house to meet friends or joining the family on community trips. In some cases, participant narratives clearly situated these changes as being due to reductions in core psychopathology, whereas others referenced improved social functioning independently of changes in symptoms. Overall, 35 participants (30%) mentioned that their relationships had improved in general, 12 participants (10%) noted an improved ability to express their thoughts and feelings, and seven participants (6%) reported now being able to leave the house.

Attitude and perspective.

Another major area of subjective change, reported by 45 participants (39%), was a shift in outlook toward life and improved attitudes toward themselves and the future (Table 3). Thirty of these participants (26%) described greater self-awareness or self-acceptance. Some participants highlighted acceptance and deeper understanding of their diagnosis, and others shared how they had, over time, come to accept and value themselves for who they were. Participants who endorsed this type of change often described having come to the realization that they were not defined by their diagnosis, and some went on to say that their experiences had uniquely positioned them to help others in recovery from psychosis or to combat community stigma. Twenty-seven participants (24%) reported other positive changes in perspective, including greater hope for the future and increased self-esteem.

Treatment engagement and activation.

Forty-five participants (39%) described changes in patient activation, including increases in medication adherence, active participation in therapy, the development of effective coping skills, and motivation and focus with respect to treatment-related goals (Table 3). Examples of treatment engagement included greater involvement and investment in therapeutic relationships, regularly attending appointments, and actively participating in groups. Medication-related changes mostly included taking medications regularly and at the doses prescribed, as well as meeting regularly with a health care professional and actively engaging with the process of medication-related decision making. Among participants describing increased treatment engagement, approximately half (N=20) described positive changes in their ability to cope with and manage symptoms of psychosis, emotional lability, depression, and anxiety.

Functional outcomes and independence.

Approximately one-third of the participants (N=37) reported positive changes in employment, education, and independence (Table 3). These changes included obtaining new jobs or internships since beginning the program (17%; N=19), completing or graduating from high school, entering or returning to college, and improving grades (15%; N=17). Fourteen participants (12%) reported significant changes in material independence, including moving into their own apartments or other independent housing, having the means to support themselves, and obtaining driver’s licenses.

Overall well-being and stability.

Although most participants expressed change in specific, discrete domains, a subset of 18 participants (16%) described more global changes, including broad improvements in general health, mental health, or well-being. Some participants simply noted that their lives were “going better” or “had returned to normal.”

Substance use.

Finally, 11 participants (10%) reported a decrease in substance use, with approximately half (N=6) focusing on previous problems with drinking and the other half on reduced use of cannabis. Participants expressed appreciation that they were “getting sober” or becoming “drug free” for the first time.

Mechanism of Change

Although not all participants explicitly described underlying mechanisms or processes of change, 102 (89%) identified what they thought had helped bring about the differences they saw since starting CSC. Broadly, participants identified therapy, medication, instrumental support (described later in this section), or a combination of both medication and either therapy or instrumental support as bringing about these differences (Table 4). Approximately 12% of participants (N=12) reported that the program had helped them, but they did not elaborate. Selected examples of each mechanism are described in the following.

Therapy.

Most commonly, improvements were explicitly attributed to work with clinicians or other CSC team members, including services provided by therapists, psychiatrists, and peer specialists; cognitive-behavioral approaches and cognitive enhancement therapy; and services received both individually and in groups. Participants frequently described specific self-management tools or strategies that a provider had taught them:

Participants emphasized the warmth and empathy of CSC providers and what was often described as a deep and genuine feeling that providers were invested in their well-being and success. One young man described his peer specialist as having been “like a father figure to me, and a light, and a mentor.” Another participant attributed her progress in school in large part to “these people [who] have my back and really did treat me just like an individual instead of just a patient, treating me more as a family.” As provider relationships developed, participants were more likely to open up: trust was tied not just to greater adherence but, in some cases, more transparency about sensitive topics. For example, one participant who struggled with substance use noted that his relationship with the therapist has “gotten to the point where I’m in full honesty” about his ongoing use, which he had not been initially.

Nine participants specifically mentioned the effectiveness of therapeutic and social skills groups. For example, one participant explained, “I’ve developed better mindfulness through the group techniques that they offer. I have better social skills. I used to not be able to really make good eye contact, and I’ve gotten better at that.”

Medication.

Although not exclusively, descriptions of the usefulness of medication were largely tied to reduction in specific symptoms of psychosis:

Participants also identified medication as useful not just for treating hallucinations and related symptoms but also other troublesome areas:

Instrumental support.

Participants described a third mechanism of change, consisting more of tangible support and assistance rather than psychological therapy. This instrumental support, often provided as part of case management or supported employment and education services, included providing rides, helping participants apply for disability and income-based benefits or to obtain jobs or paid internships, aiding participants to navigate challenges such as medical withdrawals from classes, and assisting with college financial aid, among others. For example, participants stated the following:

Discussion

Main Findings

In this study, we systematically elicited first-person perspectives of change among a diverse group of individuals with FEP who were receiving services through a CSC program. Using a semistructured interview with a large sample, we extended previous qualitative work on subjective recovery from psychosis (8–13) and went well beyond earlier studies (6, 7) in exploring client views not just on what has changed but also on the underlying mechanisms and subjective importance to the individual. Overall, we identified a diverse set of change domains, including both more traditionally clinical as well as functional areas. No change category was endorsed as most important by most clients. Overall, length of treatment in CSC was associated with a higher number of reported change domains.

Clinical Implications

The work described here aligns with the imperatives of both the recovery movement and person-centered care (18–20) in focusing on the perspectives of clients and elucidating what matters most to them. The diverse domains and priorities identified here help to reinforce the importance of measuring a broad array of outcomes and to avoid one-size-fits-all outcome metrics and performance indicators in both research and clinical practice (21, 22).

In one of the only direct studies of patient-preferred outcomes in schizophrenia, Rosenheck and colleagues (23) reported that patient views and priorities are very heterogenous, in some cases seeming to map onto individual symptom burden and treatment response. Those with relatively lower symptom burden, for example, tended to prioritize employment, whereas those with more significant clinical struggles tended to emphasize symptom amelioration. Among our participants, approximately 50% (N=58) referenced changes in symptomatology, and 31% (N=32) identified improved symptoms as the most important area of change, which was the most common area the participants identified (Table 3). Yet, even among those who highlighted improvement in psychopathology, some tied their improvements to medications, whereas others explicitly detailed improvements in their ability to cope with symptoms, often brought about through therapy. Similarly, some emphasized the greater manageability of symptoms, and others reported full resolution. With respect to CSC, these findings both reinforce the importance of centering personal recovery (24) and highlight the diverse mechanisms (or service components) that may support change domains prioritized by different clients.

With respect to measurement-based care, our findings reiterate the importance of supplementing predetermined quantitative metrics with open-ended self-reports. The simple questions used to elicit the data reported here could easily be incorporated as a check-in tool, and clinicians could use these responses to gauge treatment progress. Does the client recognize growth in the areas where the therapy has been focused? If not, can this information be used to calibrate efforts? Standardized instruments have an important place in measurement of progress, particularly in areas that are identified as valuable by clients (25). Qualitative prompts can be an effective supplement.

One type of change bears special comment. Nearly 40% of the participants reported increased therapeutic activation, including engagement with services, improved coping skills, and increased motivation to pursue their recovery. For 17% of the participants, this change was the most important shift they saw (Table 3). Broadly speaking, this domain and associated client narratives align with motivational frameworks for sustained behavioral change (e.g., self-determination theory) (26) that underscore the centrality of self-direction and autonomous motivation. Given the importance of sustaining gains both during and after discharge from CSC programs (27), the presumably deeper and more lasting benefits of the internalizing of motivation for recovery are notable. For those who endorsed change in these areas, the hope is that these clients will now leave the program motivated to continue working on their goals, even in the absence of programs providing the level and intensity of care typical of CSC.

Last, CSC is by definition team-based and multidisciplinary. Drawing on participant explanations of change mechanisms, most of the major components of the CSC model (i.e., therapy, medication support, case management, and supported employment) were referenced by at least some participants as critical components of personal change, solidly endorsing the overall approach of the model. The only CSC component that was rarely mentioned was family psychoeducation, although improvements in family relationships were noted. These particular clients may not have had families who received services, or equally plausibly, clients were not aware of services they did not directly experience. Future research with a more explicit focus on how family involvement components affect clients and any relationship to other aspects of change would further the understanding of these potentially critical intersections. Participants clearly expressed the benefit of each identified mechanism of change, particularly therapy. The report of authentic relationships they experienced strongly echoes past qualitative work on the importance of client-provider therapeutic alliances among young people (25).

Limitations

The power of this study’s findings stems from both the systematic elicitation and analysis of data, as well as from the unusually large and diverse sample of CSC clients. Participants in this study were selected by providers, however, and we had no direct way to gauge biases that this selection might have introduced; we also do not know what ad hoc criteria or considerations the sites used for participant recruitment. However, the diversity in gender, age, race-ethnicity, length of time in CSC, and range of experiences reported, including negative experiences and criticisms of CSC, does not suggest the presence of systematic bias toward selection of “success stories” or the exclusion of clients with criticisms or concerns.

Another important caveat is that questions about both change domains and mechanisms were asked in an open-ended format rather than through a checklist. We chose an open-ended method to evoke what was most salient to the participants rather than prompt responses with set options, which often results in overreporting. It is possible that those who were earlier in their recovery or who had expressive language difficulties may have benefited from more structure. One final limitation was that although programs had to provide all core CSC components identified by the National Institute of Mental Health to participate in the study, individual clients may not have had experience with therapy, medication, and case management or other CSC components to the same extent. Perceptions-of-change mechanisms could include only services they did experience.

Conclusions

The findings of this study highlight the range and variety of clients’ first-person perspectives on the impact of CSC, the most important areas of impact, and the underlying mechanisms. Broadly speaking, these findings align with the multidisciplinary, multicomponent structure of early intervention, with an emphasis on individualization and personal recovery. With respect to research, evaluation, and quality improvement, these findings also speak to the importance of involving patients in the selection of outcome measures and ensuring diversity within the FEP population.