The naturalistic outcome of schizophrenia may actually be much better than previously assumed, with positive outcome occurring for approximately half of individuals diagnosed with the illness [1, 2]. The growth and relative success of specialized intervention (SEI) services for patients presenting with a first-episode psychosis (FEP) [3, 4] have contributed to this positive outlook and encouraged a greater interest in understanding recovery. For example, in a review of qualitative studies conducted with young people diagnosed with first episode of psychosis (FEP), Boydell and colleagues [5] identified several studies examining social processes related to identity, relationships, engagement in activity, and experiences of services. More recently, researchers have sought to better understand the meanings and experiences of recovery from the perspectives of young people receiving specialized services for an FEP [6–8]. Conceptually, these studies highlight that recovery is perceived as a gradual and multidimensional process, characterized by improvements in one or more of several domains: illness recovery; psychological and personal recovery; and social and functional recovery. Moreover, there are variations in the emphasis that individuals place on each of these domains [8].

Literature reviews on studies examining the perspectives of recovery from patients with longer experience of illness also reveal that recovery occurs in several domains [9, 10], amid a complex interplay of subjective, psychological, environmental and social contexts [11]. Individuals play an active role in coping with and adapting to illness, and promoting their recovery [12–14]. Most reports concerning the subjective experience of recovery indicate processes related to acceptance of illness, developing a sense of hope about the future, cultivating a sense of agency, taking control of the illness and finding a renewed sense of self [15]. However, the majority of investigations of the subjective experiences of recovery have involved individuals with a longer experience of illness and its consequences [9], whereas individuals recovering from a first episode of psychosis represent a heterogeneous group with a wider range of outcomes. Examining recovery in such individuals is particularly important for identifying early processes and influences that may promote (or prevent) positive outcomes from psychosis.

The purpose of the present qualitative study was to explore the experiences of recovery in young people receiving specialized treatment for FEP. Specifically, the research aims were: (1) to understand the evolution of recovery experiences over the 3–5 year period following the onset episode, (2) to examine the similarities and variations between individuals in their lived experience of early recovery from psychosis and (3) to explore key turning points described in the “Results (Recovery processes)”.

Method

Participants

Participants (n = 33) were recruited from a sample enrolled in a long-term outcome study at the Prevention and Early Intervention Program for Psychoses (PEPP) in London, Canada. PEPP is a specialized early intervention (SEI) service that provides comprehensive medical and psychosocial treatment to young people diagnosed with FEP and is organized under a case management model. The nature of this SEI program, inclusion–exclusion criteria and assessment protocol have been characterized elsewhere [16]; http://www.pepp.ca). Of the 33 participants recruited, 30 (90 %) completed the interview for this study. Participants provided informed consent as approved by the University of Western Ontario Ethics Board for Health Services Research. Diagnosis was established at entry to the program using the Structured Clinical Interview for DSM-IV Axis I Disorders (SCID-I). In terms of recruitment process, individuals who presented for their annual follow-up assessment in the long-term study were invited to participate in a one-time qualitative interview to discuss the topic of recovery. Clinical and demographic information are presented in Table 1.

Table 1 Demographic characteristics of participants
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Data collection

A semi-structured interview guide was developed to elicit in-depth accounts of the individual’s subjective experience of psychosis and recovery on the following topics: the personal meaning of psychosis, the meaning and important processes of recovery and experiences of treatment. The goal of the interview was to retrospectively explore changes in these themes over the 3–5 years since onset of illness and initiation of treatment and to identify critical turning points in recovery. In this context, turning points refer to self-reported life events that reflect perceived changes in trajectory resulting in lasting change and are useful for understanding subjective experience [17]. The Turning Point Interview (Patient Version) developed by Corin and colleagues [18] was consulted and relevant questions were adapted to the topic of recovery. Instead of using diagnostic and clinical terms (e.g., “psychosis”), the terms used by the participants were adopted by the interviewer. Interviews, ranging from 1 to 3 h, were conducted by DW at a time and place of convenience for the participant and were audiotaped and transcribed verbatim. None of the authors were involved in the clinical care of the participants.

Analysis

The data were analyzed using interpretative phenomenological analysis (IPA) [19]. The details of data analysis are provided in an earlier publication. The guidelines provided by Smith and colleagues [19] for larger samples were followed in the present analysis. IPA is an increasingly popular approach to conducting qualitative research in psychology, offering a theoretical underpinning and a set of methodological procedures [20]. IPA has been used in research with participants with psychotic disorders [21, 22] and has been applied to the study of recovery from psychosis in particular [23]. The goal of IPA analysis is to develop in-depth understanding of individuals’ perceptions and accounts through a subjective and reflective process of data interpretation [19]. IPA is not a prescriptive approach, but instead provides a set of flexible guidelines that can be adapted for specific research purposes [24]. We chose to include a large sample size (by IPS standards) of 30 participants due to the known variation in recovery experiences and the intent to explore patterns of similarity and difference in recovery experiences within the group. This was also a sufficient number to achieve saturation of themes.

The transcripts were initially examined individually, first noting preliminary observations of important ideas described by the individual, followed by grouping of these ideas into higher-order themes representing the individual’s concerns on the topic. These themes were then examined extensively across cases for patterns and connections between ideas, as well as contradictions and tensions, identifying thematic linkages in an attempt to create broad categories. Each extract was examined to elucidate shared aspects of the participant’s experience in relation to the themes and categories. Throughout the analysis, constant reflection, discussion with research team members and re-examination of the verbatim transcripts were utilized to enhance trustworthiness of the process and to validate that the constructed themes were meaningfully and closely connected to the source material.

Results (Recovery processes)

Several categories that reflected subjectively important processes of recovery were identified, namely: symptom recovery, reconciling meaning and acceptance, regaining control, and negotiating and accepting treatment. See Table 2 for an overview of the sub-themes associated with these categories, which are described below in detail.

Table 2 Recovery experiences categories and themes
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Symptom recovery

The “symptom recovery” domain encompassing the subthemes of “improvement” and “relative distress” were revealed by 27 (90 %) of the participants. Descriptions of illness recovery also included numerous affective (e.g., mood, anxiety), cognitive (e.g., concentration) and negative symptoms (e.g., motivation). Turning points described in the illness recovery domain reflected either an attenuation or elimination of psychotic and/or affective symptoms.

Improvement

A relief from distressing symptoms was described by many as the initiation of their recovery, and 16 participants identified illness-specific (psychosis and/or affect) turning points, which occurred at various time points in recovery, ranging from weeks to 3–4 years following initial treatment:

I look back at myself and go, “You know, I was thinking that, but that’s not true.” At the time, it felt like it was true or it sounded good to me, but it wasn’t a real thought—and it wasn’t until I could actually say, “No, that’s not true” that I reached that turning point.

Some individuals identified more than one illness turning point, having experienced elimination of symptoms as an incremental process:

I went to Seroquel, which started to work pretty well. At that point…I probably would’ve said then that I was recovered. But when I went to Clozapine, it was like another level.

The theme of finding the “right” medication was commonly associated with symptom turning points. Improvement in symptoms was nearly always attributed, at least in large part, to medication:

…the first time they put me on Seroquel—it was such an unbelievable change. I went from being delusional and having hallucinations to being free of that in two weeks.

Relative distress

The subjective experience of symptom improvement depended on the relative distress caused by different symptoms, with non-psychotic symptoms often being more saliently distressing, and was typically the most important in recovery experiences:

The panic attacks were the worst, I think, by far. ‘Cause you didn’t really feel like you could do anything about it. And my symptoms were—I don’t know if they’re different than most people. When I was hearing the voices or whatever…that never really bothered me at all.

This was especially true for the individuals who described their struggle with depression as causing the most subjective distress in their recovery:

Um, see the—the, the depression was the worst. It’s really hard to get motivated to do anything at all. Let alone something difficult…the depression was the hardest part.

Reconciling meaning and acceptance

The category of “reconciling meaning and acceptance” reflected the turning points and processes of “recognizing” a psychological problem and “reconciling” the personal meaning of the experience. These processes were described, by most individuals, as essential before moving forward in recovery with considerable variation at the rate and ease with which individuals moved through them.

Recognizing

The “recognition” turning point was described as a realization that “something was wrong” within himself or herself, often following resolution of psychotic symptoms. This turning point of recognition included a perception of psychological changes retrospectively once symptoms subsided, or by noting discrepancies between expectations (driven by delusional thinking) and actual experiences, often in confluence with observations made and conveyed by others. This period of time for ‘recognition of something wrong’ varied greatly between individuals, ranging from days or weeks to a prolonged period of many months or, in some cases, years.

I was seeing things and having delusions about where I was and who I was…and then I got started on medication and after a week or two the symptoms cleared up.

I thought people were out to get me and everyone was staring at me. And I didn’t realize it was schizophrenia. It still progressed for another…two and a half years of battling—with the schizophrenia before my perception of things changed in a more healthy manner; more true to reality.

Reconciling

The experiences of “reconciling” included processes of differentiating between the illness and the self, forming a coherent explanation and reconciling the personal meaning of the experience and implications for the future. These processes were critical in early recovery. This quest to “understand” the experience was highly individual, depending on personal notions of mental illness, messages received from influential others and direct illness experiences. Participants described an initial period of uncertainty and flux as they struggled to “make sense” of what happened to them and why it had happened, thereby considering, ascribing and combining various explanations:

But just wondering why it happened to you is one of the big things, too. Wondering why there aren’t other people, like there isn’t anyone to compare to, like it didn’t happen to anybody else in my family. Wondering why that is.

The reconciling process also frequently involved teasing out what was “real” from what was “not real,” as well as delineating what aspects of the experience were attributable to personality, illness or medication side effects. Seeking information about the illness from various sources was an important activity in this process. Individuals described refining their explanation over time as new information and experiences were introduced, eventually developing an account for the experience that was relatively coherent and relevant to the individual’s experience:

When I would talk to [case manager] we would go over symptoms like, are you hearing voices? These make sense, because…when someone describes what you’re feeling, then you feel, yeah, that’s my problem and that’s why I picked up on the fact that I have psychosis.

An explanation for the experience did not come fully formed and were often described as continually shifting over time. An adequate, albeit somewhat tentative, explanation was necessary to begin to move forward in recovery. Reconciling the meaning of the illness (often described as “acceptance”) generally included accepting one’s potential long-term vulnerability to relapse. Hence, shifting from conceiving of the ‘experience’ as an isolated event to that of an enduring illness appeared to be an essential experience in the recovery process for some. Therefore, for many individuals, the experience of relapse was an important turning point in accepting the fact of enduring vulnerability and acceptance of the experience as an illness:

After I relapsed I’m thinking, “Huh, ever since I took the Olanzapine, all that went away after all, just like it did when I took the Risperidal.” And I was like, “Oh, it’s an illness.” That was actually the, the pinnacle—But it took awhile for me to get…to realize that.

In this way, the reconciling process included adjustment not just to having had a psychotic episode, but to the idea of having a mental illness and all of the perceived personal and social ramifications. Inherent in this acceptance, experience was “coming to terms” with the various losses associated with this acceptance of a psychotic disorder. While grieving the loss of a “normal” identity was commonly described, constructive acceptance of illness was especially difficult for a subset of participants associated with feelings of powerlessness, loss and being overwhelmed and resulting in a period of depression and demoralization:

And I had this huge, uh, breakdown because I thought that here I was living for, like…two years and I thought I knew who I was but then it’s like…that idea is…not true, so then you have to rebuild who you are all over again.

The participants who struggled before reaching this point of constructive acceptance of illness inevitably emphasized this process as an essential turning point in their recovery:

I think I was just putting the schizophrenia aside. And I wasn’t dealing with it. I think the reason why I relapsed was, I still hadn’t dealt with acceptance—a big part of turning things around for myself was no longer worrying about—the stigma.

There was remarkable variation on subjective difficulty, distress and duration of this process. Once a coherent explanation of the experience was developed and the individual had resolved (at least in part) the meaning of the experience, the subsequent self-recovery experiences were possible. For example, the explanation for the experience influenced the perceived avenues open to the individual in his or her recovery.

Regaining control

This recovery process encompassed the sub-themes of “discovering agency” in influencing the illness experiences and “developing personal strategies” for promoting and protecting recovery.

Discovering agency

Realizing that one can act upon one’s illness and circumstance to promote positive change was commonly identified as a turning point. “Regaining” turning points involved becoming aware that change is possible and taking personal responsibility makes changes happen. Many individuals described a conscious decision to confront the illness and surrounding circumstances:

That’s when I thought, you know, I’ve got to do something about this. I said, okay, I’m going to do it. I’ve got to get out of this. I can’t let this bring me down.

Developing personal strategies

The ways that individuals took responsibility depended on their ideas about illness, linked to perceived avenues for illness control and the resources available to the individual. In general, these strategies were both internal, by changing one’s “mindset” and behavioral, by taking deliberate action to promote recovery, prevent relapse or preserve progress:

I decided to, to change my attitude. So that was one part of it, and the other part of it was that I changed, my living conditions—that brought my mood up and that was able to help me change my outlook on life.

These strategies involved personal observations and experiences of factors influencing symptoms. Seeking information was an important part of developing a coping strategy as was “experimenting” and “testing limits” to discover ways for enacting their power over their experience. These processes were described as enhancing their “self-awareness.” The process of modifying attitudes and behaviors appeared to enhance recovery by renewing one’s sense of hope and enhanced a sense of control:

This stuff needs facts…they made a little chart as to the chances of relapse and how if you stayed away from the drugs, stayed on your meds, the chance of relapse is zero. That was like, wow, I can actually be healthy for the rest of my life if I make the right choices.

Both a deliberate, self-initiated choice and precise behavioral descriptions were described, as reflecting the individual’s whole-hearted commitment to the goal of recovery, prioritizing recovery above all else:

So recovery—what it means to me is doing what you have to do—you’ve gotta stop hanging out with certain people, stop doing certain things. It was a big change—it’s not something that you want to do, but you have to—balance it against your lifestyle…

The elimination of drug and/or alcohol use, active treatment participation (including attending appointments, disclosure of experiences to treatment providers, regularly taking medication), and engagement in creative activities were identified as essential turning points in recovery for some individuals:

‘It was really touch and go until I found photography by getting a camera, which was pretty cool because my parents let me use my tuition money to get a camera…and I wanted to learn…so I took some courses and that’s when things really started getting better again, and…it was having that sort of, something to put your ideas towards…and for some reason, it gave me a desire to do something and get out of bed, you know? I’ve grown from the whole thing and I’ve found…a new passion for this photography.’

While cautious about relapse risk, many believed that any subsequent experiences of psychosis could not possibly be as confusing or alienating as the first episode, because they now understood what was happening to them and had knowledge of what they could do to recover:

Well…when you get a relapse…it kind of puts it back to where you were, but still having these skills that you’ve learned along the way helps you rebound that much quicker.

Treatment negotiation and acceptance

Negotiation of meaningful and active participation in treatment, while avoiding engulfment in the patient role, was important to many and included “engaging with providers” and “negotiating medication.” Treatment turning points reflected engagement with treatment, disclosure of problems and experiences, events that engendered trust in the treatment provider(s), a change of medication or sustained medication adherence/acceptance.

The trajectory of change in treatment perceptions and attitudes in the period following onset of illness varied widely. Individuals spoke of having difficulties and a prolonged process of coming to terms with the need for medication. This was especially difficult when initial medication was not effective in reducing symptoms, when side effects interfered with other valued states (e.g., alertness) or activities (e.g., cognitive performance), or when the individual experienced difficulties reconciling the meaning of the illness (acceptance):

I think it wasn’t so much taking or not taking the medication that was my biggest concern, it was my pride and—the stigma that comes with schizophrenia that was my biggest challenge. So, as soon as my mood and my perspective dealing with schizophrenia turned around the next step was to just start taking the meds, and that was very easy.

Acceptance of medication was described as a process of weighing various perceived costs and benefits. Messages from the social milieu regarding the need and meaning of psychiatric medication enormously influenced their perceptions and actions regarding this aspect of treatment.

Two distinct trajectories emerged related to the acceptance of illness. Some described a relatively early recognition of a problem and acceptance of illness, involving minimal disruption of the self (prompt group, n = 16, 53 %). Others described a prolonged struggle in accepting an illness framework for their experiences (prolonged group n = 14, 47 %). Individuals in the latter group often described a considerable difficulty recovering from perceived losses in personal and social worth, sometimes leading to a period of significant demoralization. This group revealed two distinct subgroups: those individuals who experienced difficulties with recognition of something being wrong psychologically for a prolonged period of time (n = 8, 27 %) and those who had difficulties with the reconciling processes (contested the meaning of the changes) (n = 6, 22 %).

Turning points toward acceptance were often linked to change in medication or increased adherence in the first group. The individuals who had a longer struggle with the reconciling process described experiencing a great deal of reluctance in the adoption of an illness framework for their experience. They often cited the losses in social worth associated with an identity of being ill as the reason for their resistance. In general, the narratives of individuals in the prolonged group included descriptions of considerable self-biographical disruption, loss and negative illness perceptions:

I feel sometimes that I’m a bad person or, that there’s no hope for me…I have these beliefs that I don’t know why I have them—I don’t want to be a person with psychosis. I just want to be normal. I just want to be like everybody else.

Relapse was another commonly identified turning point for individuals who experienced a prolonged course of acceptance. They often described initially settling on a non-illness explanation for their experience of psychosis before the experience of relapse necessitated a revision of their explanation and way of reconciliation. Those individuals who described a belated acceptance turning point in recovery often described strong feelings of regret and guilt regarding the delay and saw it as adding an additional layer of losses.

…but I stopped taking my medication—and that was actually more than the worst mistakes I’ve ever committed. I went through a rough ride to realize I really needed medication—I regret it, because I could have had at least my degree and then could’ve been working…

Discussion

Participant descriptions of their recovery experiences and the meanings ascribed to them revealed several critical processes. In this report we have highlighted those related to symptom recovery; reconciling the meaning of the experience; regaining control over the experience; and negotiation and acceptance of treatment. Overall, these findings are in keeping with many of the key elements of recovery put forth in other recovery studies [5, 7–10] and also provide important insight regarding the nature of recovery trajectories that follow the initial episode.

Congruent with previous research, early stages of the recovery trajectory were characterized by a process of making sense of psychotic experiences through finding meaning [25] by adopting various information strategies depending on mental state and influences [26]. The vast majority of informants in this study emphasized the essential role of illness acceptance as part of this process. The controversy in the literature about whether or not awareness and acknowledgement of a psychiatric disorder is necessary for recovery likely reflects the fact that both acceptance and non-acceptance pose significant risks (for a review see Roe and Kravetz [27]).

Not surprisingly, those individuals who experienced difficulty with the task of “reconciling” the personal meaning of the illness also described difficulty accepting a need for treatment. Treatment experiences described by these individuals were characterized by multiple tensions and repeated the approach-avoidance patterns, which can accompany internal conflict. It is likely that such individuals who experience difficulty reconciling the meaning of the experience are at high risk for service disengagement. This has important implications for service delivery and the importance of finding ways to identify those individuals who are at risk of failing to acknowledge the presence of an illness. Specific interventions designed to enhance individual’s perceptions of illness controllability and to decrease the risk of internalizing stigma may serve to prevent the devastating demoralization and treatment avoidance that were described by a subset of individuals. For example, Lal and colleagues [28], based on a recent qualitative study, suggest that peer support activities, specifically those involving sharing of illness and recovery experiences provide opportunities for meaning making and illness acceptance, and thus may be relevant for those at risk of a prolonged trajectory of recovery.

Negative perceptions about ‘being ill’ also have implications for processes associated with getting better and avoiding negative trajectories such as relapse. It is important for service providers to be aware of difficulties associated with negative experience with medication initially which is likely to strengthen negative perceptions about being ill. For example, relapse is often regarded as a negative trajectory of outcome, often resulting from cessation of medication. Many of the participants saw relapse as a turning point in their appraisal of their condition, providing an opportunity for a re-appraisal of their explanatory model. This has implications for service providers who understandably focus on encouraging adherence to medication to avoid a relapse. Service providers may need to recognize that for some patients relapse, while an unwanted event, may be an essential turning point in their ability to come to terms with the illness. Service providers, therefore, need to offer the necessary support and guide them through helping to recognize an impending relapse, to understand its meaning and intervene early to limit its harm.

The finding that individuals described a process of seeking and engaging in creative activities as a critical turning point in their recovery process is consistent with recent research with young FEP patients that highlights the relation between valued activity engagement, recovery and well-being [28, 29]. Results from one of these studies show how creative activities such as painting, writing, singing and playing musical instruments contribute to the well-being of young people recovering from psychosis. Specifically, young people valued these activities because they provided opportunities for meaning making, expressing thoughts and emotions, connecting with others and cultivating skills, virtues and personal strengths, highlighting the importance of supporting patients in discovering and engaging with creative activities that can facilitate their process of recovery [28].

It is important to note that many salient turning points, and sometimes even the initial turning point, in the individual’s recovery occurred well after illness onset and treatment, at times 2 or more years later. This has important implications for considering the optimal duration of service delivery in an SEI service. Our findings suggest that individuals who experience their turning points much later in the course of treatment may need longer duration (e.g., 5 years) of an SEI service than is generally provided (2–3 years). This can inform policy planning in relation to the allocation of resources for program delivery.

There are three potential limitations in the present study. The first is the application of IPA methods for such a large sample size. As IPA is an idiographic method, the analysis of a large data set risks a relatively superficial interpretation compared to the spirit of idiographic inquiry, with potential loss of subtle nuances in meaning. We attempted to minimize this risk by carefully following published guidelines for large-sample IPA analysis [19], giving detailed consideration to each case and carrying out several repeated cycles of analysis. The second limitation is that the change processes in early recovery were ascertained through retrospective reports. This is an important limitation, as it has been noted that ideas of recovery change over time [30]. Confirmation of the present findings using a repeated longitudinal design following the onset of a psychotic episode would be informative. The third limitation is that the present study examined recovery experiences among individuals treated in a specialized treatment program. As noted earlier, this may account for the high proportion of positive experiences during the early phase of recovery compared to the current literature on recovery experiences. While these findings may not generalize to the recovery experiences of individuals who do not receive early phase-specific treatment, they provide additional evidence for the potential effectiveness of SEI services. Future research comparing subjective recovery experiences between individuals who receive standard care versus those individuals who receive SEI services may shed further light on the impact of early intervention on the experience of recovery.