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Psychotic disorders have traditionally been viewed as chronic illnesses, which has led to feelings of hopelessness for people with lived experience of psychosis, their families, and health professionals, as well as significant public stigma. More knowledge is therefore needed regarding long-term positive outcomes in psychosis, particularly the ultimate positive outcome, recovery.
However, recovery is a broad construct which is often divided into two different perspectives. Clinical recovery involves an objective measure of stable symptom remission and adequate functioning. Personal recovery involves a subjective process of finding a good and meaningful life with potential symptoms or disability. Nevertheless, there is no consensus definition of clinical recovery in psychotic disorders and clinical recovery rates vary across studies. Personal recovery, on the other hand, is often described as a vague construct, and there are few studies on personal recovery in the long-term. Furthermore, these two perspectives stem from separate research fields, quantitative psychiatric research and qualitative service user-oriented research. Clinical and personal recovery are therefore rarely investigated together in long-term (10 years or more) follow-up studies. These issues have led to unanswered questions about what constitutes a good outcome, who should make that judgment and how many will experience positive outcomes in the long-term. Lastly, what is experienced as important for long-term recovery in psychosis is rarely explored from first-person perspectives.
The primary aim of this thesis was therefore to provide more comprehensive knowledge about long-term positive outcomes, especially recovery, in psychotic disorders. In the TOP (Thematically Organized Psychosis) study, a large follow-up study of people with first-episode psychosis (FEP; including schizophrenia and bipolar spectrum disorders with psychosis), the rate of objective and subjective positive outcomes 10 years after treatment start was investigated. Moreover, what has facilitated long-term recovery from the perspective of a smaller group of participants in recovery (personal and/or clinical) was explored with qualitative interviews. These participants were sampled from both the TOP 10-year follow-up and the 20-year follow-up of another large FEP study, the TIPS (The Treatment and Intervention in Psychosis) study.
In the first paper, the rate of clinical recovery when using different criteria was investigated in 142 FEP participants and 117 healthy controls at 10-year follow-up. From the analyses, one-third of FEP participants were in clinical recovery using strict criteria, which included symptom remission, full-time employment and weekly social activity. For all participants, it was employment, not symptoms, which was the largest barrier to meeting clinical recovery criteria. There is less research on clinical recovery in bipolar disorder. A positive finding was thus that half of all participants with bipolar disorders were in clinical recovery, compared to one in four with schizophrenia. Almost one-fifth of controls did not meet the standard adequate functioning criteria. Based on these findings, alternative and more reasonable recovery criteria were suggested to facilitate a discussion about the lack of a consensus definition of clinical recovery in psychotic disorders.
In the second paper, the rate and overlap of both objective and subjective positive outcomes were investigated in 128 FEP participants at 10-year follow-up. The majority of participants experienced at least one positive outcome, which included clinical recovery, personal recovery, and emotional wellbeing. As many as half of the total sample experienced personal recovery and two-thirds reported emotional wellbeing, with no significant difference between diagnostic groups. Thus, another positive finding was that although only one in four with schizophrenia were rated as in clinical recovery, around half experienced subjective positive outcomes. Finally, in the total sample, personal recovery and emotional wellbeing were more related to each other than to clinical recovery.
In the third paper, 20 participants were interviewed about what was important for their long-term recovery. From the thematic team-based analysis, the overarching theme was that participants described themselves as the main facilitators of their recovery, above services. Five personal resource themes important for long-term recovery in psychosis were generated from the analysis: 1. Doing recovery in everyday life (agency in everyday life); 2. Re-evaluating risk (reconsidering limitations and stress reduction to take positive risks); 3. Becoming a caregiver (developing from being taken care of, to taking care of others); 4. Negotiating normality (experiencing identity formation and social inclusion); 5. Owning and sharing your story (overcoming stigma by accepting and sharing lived experience).
In the fourth paper, these interviews were analyzed again to explore which aspects of both mental health and welfare services participants evaluated as important for recovery. The main finding was that participants were more concerned with how services related to them than specific interventions. Furthermore, services appeared to influence their recovery more indirectly in the long-term, through supporting their resources, rather than focusing on their limitations. The analysis generated five aspects of services deemed important for long-term recovery in psychosis: 1. Resource-focused services (focusing on personal strengths rather than limitations); 2. Collaborative services (based on shared decision-making and transparency); 3. Welfare services (offering safety through basic resources and employment); 4. Caregivers and peers in services (including social support in treatment); 5. Consistent services (providing continuity and long-term follow-up).
In sum, the results of this study demonstrate that psychotic disorders are not necessarily chronic and that there are many ways to experience recovery. Furthermore, they highlight that people with psychotic disorders have both considerable resources and important knowledge, which should be better utilized in services. The results also imply that it is particularly important to consistently implement employment support, shared decision-making and more nuanced psychoeducation on stress reduction in services. Ultimately, the results presented in this thesis are significant research contributions that can increase hope for a good life and reduce stigma for people with psychotic disorders.
