Positive Changes Experienced After a First Episode of Psychosis: A Systematic Review
Abstract
Objective:
Although the negative consequences associated with first-episode psychosis (FEP) have been well investigated, relatively less is known about positive changes that people may experience after FEP. Existing literature is disparate and in need of synthesis. Such a synthesis can inform the design of mental health services that foster strengths, hope, and optimism. The objective of this study was to synthesize the literature on how positive change is experienced after FEP by affected persons and their families and friends and to delineate the individual, social, and structural factors facilitating positive change.
Methods:
A librarian-assisted systematic review of quantitative, qualitative, and mixed-methods studies published in English between 1970 and 2015 was conducted. Articles identified from three databases (PubMed, PsycINFO, and Embase) and through additional search strategies were screened. Results sections were open coded and analyzed by using thematic synthesis.
Results:
Of the 2,777 studies identified, 40 were retained. The synthesis of findings showed that after FEP, service users and their families and friends experienced positive changes at the individual (for example, more insight and clarity), interpersonal (for example, improved relationships), and spiritual levels (for example, greater religiosity). In addition to being facilitated by mental health services, these positive changes were enabled by personal (for example, motivation), social (for example, family support), and spiritual (for example, prayer) factors.
Conclusions:
Suffering is a core experience of FEP from which a range of positive changes can follow among service users and their families and friends. It may be beneficial for mental health services to specifically strive to promote these positive changes.
Psychotic disorders are among the most severe mental health problems, leading to immeasurable suffering (1,2), particularly in first-episode psychosis (FEP) when youths experience what can be a frightening illness. The consequences of psychosis are particularly serious given that its onset is usually during late adolescence and young adulthood, a critical developmental period for the attainment of educational, occupational, and relational milestones.
Understandably, then, knowledge about the aftermath of psychosis focuses on its negative consequences, such as its deleterious effects on functioning, cognition, and quality of life. Thus evidence-based services and interventions have largely drawn on knowledge of the negative aftermath of psychosis. Conversely, little is known about whether and how people experience positive changes after a first episode. Even less is known about what factors facilitate such positive change (3).
It may seem surprising that psychosis could lead to positive changes. However, studies examining the consequences of a range of psychologically traumatic events and “physical” health problems (for example, cancer) have described positive changes in their aftermath (4–7). These changes have been conceptualized as posttraumatic growth, stress-related growth, or benefit finding and may represent changes in individuals beyond a return to their “baseline” level of functioning. Such changes may include a stronger sense of self, a greater appreciation for life, greater spirituality, and better relationships (8–10). There have also been reports of positive changes among individuals who have had psychosis for many years and their families or caregivers (11,12).
No systematic review has been published of positive change arising from FEP and the facilitators of such change (3). Such a knowledge synthesis would be congruent with recent calls for designing and using services and interventions that are strengths based and that focus on optimism and hope, especially during the early phases of psychosis (13–15). In addition, this knowledge may show young people that there is more to the experience of FEP than suffering and that in addition to experiencing caregiver burden and strain, there may also be positive effects for families, caregivers, and friends.
To provide an account of the current state of knowledge about the positive changes people may experience after FEP, we conducted a systematic review of qualitative, quantitative, and mixed-methods studies. Our objectives were to synthesize the evidence on how positive change is experienced after FEP by people with lived experience of FEP, their families, and friends and to delineate the individual, social, and structural factors that facilitate positive change.
Methods
Our own previous scoping review, which comprised the first phase of this investigation, showed that studies describing positive change after FEP most often used qualitative methods, that many of these studies focused on recovery, and that positive change occurred among service users and their families and friends (3). On the basis of this information, we conducted a systematic review of qualitative, quantitative, and mixed-methods studies—that is, a mixed-studies review. This review ensured that we tapped the methodological (qualitative research in FEP) and conceptual (recovery) areas likely to yield a greater number of articles to answer our research questions. Our review followed the guidelines for conducting a mixed-studies systematic review, as detailed in the Toolkit for Mixed Studies Reviews (16), which is based on PRISMA guidelines (17).
Formulating Review Questions
We followed SPIDER (Sample, Phenomenon of Interest, Design, Evaluation, and Research type) guidelines to develop mixed-studies review research questions (18) on the basis of extant research and consultations with youths with lived experience of psychosis, their family members, clinicians and researchers in early intervention for psychosis. There was consensus among stakeholders that our research questions were relevant, understudied, and deserving of investigation.
Defining Eligibility Criteria
The potential for FEP to lead to positive change may be met with skepticism, because it seems counterintuitive to the bulk of research focused on the negative aspects of psychosis. Thus it became important to increase confidence in the findings of our review. Therefore, we considered only scientific, peer-reviewed research that used clearly described methodologies. This included English-language, peer-reviewed journal articles and conference abstracts. Specifically, only qualitative studies focused on FEP outcomes and studies of recovery in FEP, whether qualitative, quantitative, or mixed methods in design, were eligible for inclusion in our review. Gray literature and other systematic reviews were excluded; however, reference lists of relevant systematic reviews were consulted to identify potentially relevant primary studies. Articles defining recovery exclusively as symptomatic and functional remission were excluded, because their focus was on a return to normalcy, not positive change beyond normalcy.
Identifying Sources of Information
We developed an extensive search strategy with the assistance of a university librarian. To increase the reliability of the search, a second university librarian examined and provided feedback on the search strategy. The McMaster University Health Information Research Unit’s qualitative search strategies (19) were applied to three databases considered highly likely to yield studies of FEP (Embase, PsycINFO, and PubMed). These search strategies have been validated and can retrieve qualitative research with 92% specificity and sensitivity (19). The databases were searched for literature published between January 1970 (when the majority of research on FEP began to emerge) and March 2015.
Additional search strategies included manual searches of key journals identified during the scoping review (3) (Early Intervention in Psychiatry and Psychosis: Psychological and Integrated Perspectives); searches of Google Scholar, PsycINFO, PubMed, and CINAHL (Cumulative Index to Nursing and Allied Health Literature); use of backward and forward citation tracking with Google Scholar and Scopus; examination of monthly citation alerts e-mailed to the first author (GJ); receipt of monthly updates on PubMed-indexed qualitative research from a research assistant over the course of the study; and consultation with experts. Two pertinent studies of posttraumatic growth retrieved during the scoping review phase were included because they were not found in this second systematic review phase (20,21). [A table in an online supplement to this article lists all keywords used during the search.]
Identifying Potentially Relevant Studies and Selecting Studies
Articles were downloaded as EndNote files and uploaded into DistillerSR, a specialized software that facilitates article screening for systematic reviews (22). Using screening checklists over two phases, two authors (GJ and MAP) independently screened each article for inclusion or exclusion. The senior author (SNI) was consulted to resolve disagreements when necessary.
First, abstracts (N=2,777) were screened for keywords related to recovery in FEP (for example, “recover”) or qualitative research methodology (for example, “interviews”), with very high agreement between the two authors (κ=.93).
Two authors (GJ and ES) then independently read the results sections of each included article (N=358) to identify any description of positive changes after FEP. We included an article during this phase only if there was explicit mention by study participants or the authors of any positive changes directly arising from or after the experience of FEP. Segments of text mentioning positive change were examined and compared by two or more authors until consensus was achieved (κ=.83). [A flowchart of the screening process is included in the online supplement .]
Appraising the Quality of Studies
Each included article was critically appraised by three independent authors (GJ, KM, and ES) using the Mixed Methods Appraisal Toolkit (23), a validated, widely used critical appraisal tool designed to ascertain the methodological quality of quantitative, qualitative, and mixed-methods articles. The toolkit consists of 19 questions (for example, “Is appropriate consideration given to how findings relate to the context?” and “Are measurements appropriate?”) that produce an overall score ranging from 0%, no criteria met, to 100%, all criteria met. Final quality appraisal scores were arrived at by consensus.
Synthesis Design
Our synthesis used a convergent qualitative synthesis design, whereby the quantitative findings (numbers) of included articles were transformed into qualitative data (words) by utilizing an open coding method used in qualitative research. This approach allowed us to keep our synthesis closer to the findings of many of the original articles, because 37 of the 40 included articles used qualitative methods.
Once data were transformed and a complete qualitative data set was developed, we conducted a thematic synthesis (24) using ATLAS.ti 7. To be faithful to the findings of various studies and the interpretations of their respective authors, we prioritized inductive and semantic approaches. First, one author (GJ) coded the results sections of each included study sentence by sentence. Codes were then grouped together to form more focused codes, which were defined in a coding manual (25). As recommended by Thomas and Harden (24), four authors (GJ, KM, MP, and SI) then grouped focused codes into analytical themes (that is, pertaining to the research questions) or descriptive themes (that is, pertaining to the content of articles that was not related to the research questions but helped contextualize them) (24). When constructing themes, we considered the frequency of their representation in the data set and their importance (26). Themes were then refined so that they best described and fit the data, both within and across studies. Once our final list of themes was compiled, two authors (GJ and KM in consultation with the senior author [SI]) read the results sections of each article to validate the themes and reached a final consensus. Analytic and descriptive themes were combined to form a comprehensive synthesis of the study findings.
Measures undertaken to ensure rigor in the analytic process included keeping detailed memos, reflexive notes, an audit trail, and a journal to assist with the analysis and to facilitate an awareness of how the synthesis was shaped by the first author’s personal stance (that of an emerging researcher deeply influenced by critical disability studies, psychology, political science, and personal positive experiences with youths with FEP) (26). We also compared our insights with theoretical models of positive change developed by the authors of the reviewed articles.
Results
Characteristics and Quality Appraisal of the Included Studies
Forty articles were retained after screening and synthesized (20,21,27–64). [A flow chart of the screening process is included in the online supplement .] Most of these studies (N=37) employed qualitative methods, one exclusively used quantitative methods (20), and two used both qualitative and quantitative methods (21,55). A total of 715 participants were included across studies; however, because of the nature of using secondary data, it is impossible to know the absolute number of participants who experienced positive change in these studies. The mean±SD age of service users was 24.82±4.61. Studies were conducted with participants living in the United Kingdom (20,27,28,31,32,37,41,44,48–51,53,54,58,62–64),Australia (21,30,36,38,43,57,60,61), Canada (40,46,55,59,60), Denmark (42), Finland (39), New Zealand (29), Norway (34), Slovenia (45), the United States (33), Brazil (47), China (52), Indonesia (35), and South Africa (56). Participants in these studies identified with various ethnic, racial, and cultural backgrounds (for example, white, black Caribbean, Bangladeshi, and Māori). Participants of various socioeconomic backgrounds and representing various stakeholder groups (service users, families, and friends) were featured in the studies.
Family members were identified in ten studies as “a close relative” (27); caregivers (28); primary caregivers (29); a primary caregiver “apart from a health, social, or voluntary care provider (which included parents, grandparents, spouses or partners, and aunts and uncles)” (30); siblings (31,32); foster parents and parents (33,34); spouses and other family (35); and parents and previous and current long-term romantic partners (36). Friends were identified in one study as “friends who service users thought could best describe their friendship” (37). Twenty studies reported having included individuals up to five years after the onset of FEP (N=11) (31,32,36,40,41,43,52–55,58) or of treatment (N=9) (20,30,33,37,44,46–49). The remaining 20 studies did not provide information on exactly when assessments were conducted after the onset of FEP (21,27–29,34,35,38,39,42,45,50,51,56,57,59–64). Study and participant characteristics are presented in Tables 1 and 2.
| Study | Country | Quality score (%)a | Aim | Approach | Data collection | Themesb |
|---|---|---|---|---|---|---|
| Barker et al., 2001 (27) | United Kingdom | 75 | To explore the narratives used to explain the process of developing schizophrenia | Grounded theory | Semistructured interviews | Aspects: individual level; facilitators: services |
| MacDonald et al., 2005 (43) | Australia | 100 | To explore experiences of social relationships during recovery from FEP | Phenomenological approach | Open-ended interview | Aspects: individual level; interpersonal; facilitators: personal |
| Mackrell and Lavender, 2004 (44) | United Kingdom | 100 | To explore peer relationships before, during, and after the onset of FEP among people recovering from FEP | Grounded theory | Semistructured interviews | Aspects: individual level and interpersonal;facilitators: na |
| O'Toole et al., 2004 (64) | United Kingdom | 25 | To explore experiences of an FEP intervention and establish aims seen as effective for future service planning | Interpretative phenomenological analysis | Focus groups | Aspects: individual level; facilitators: personal and services |
| Connell et al., 2015 (38) | Australia | 75 | To explore experiences of the early stages of recovery from FEP | Interpretative phenomenological analysis | Semistructured interviews | Aspects: individual level and interpersonal;facilitators: personal |
| Krupa et al., 2010 (60) | Canada and Australia | 75 | To explore activity and social participation after FEP | Constructivist grounded theory | Semistructured interviews; document analysis | Aspects: individual level; facilitators: services |
| Vodušek et al., 2014 (45) | Slovenia | 25 | To explore the emotional experience of FEP | Phenomenological approach | Open-ended interviews | Aspects: individual level; facilitators: na |
| Tanskanen et al., 2011 (28) | United Kingdom | 50 | To explore experiences of onset of FEP and help seeking for FEP | Thematic analysis | Semistructured Interviews | Aspects: spiritual;facilitators: spiritual |
| Windell and Norman, 2013 (46) | Canada | 50 | To examine perceptions of what influences recovery after FEP | Thematic analysis | Semistructured interviews | Aspects: individual level and interpersonal;facilitators: personal, social, and services |
| Anderson et al., 2013 (59) | Canada | 50 | To explore pathways to care and factors that influence help seeking | Qualitative descriptive approach | Unstructured and semistructured, in-depth interviews | Aspects: individual level and interpersonal;facilitators: na |
| Stewart, 2013 (61) | Australia | 100 | To explore the process of engagement in treatment after FEP | Grounded theory | Semistructured interviews | Aspects: individual level and interpersonal;facilitators: services |
| Eisenstadt et al., 2012 (47) | Brazil | 25 | To understand the experience of recovery after FEP | Phenomenological approach | Semistructured interviews | Aspects: individual level; facilitators: na |
| Harris et al., 2012 (48) | United Kingdom | 75 | To explore service user experiences of being in contact with early intervention services and the impact of that contact | Interpretative phenomenological analysis | Semistructured interviews | Aspects: individual level; facilitators: services |
| Ashcroft et al., 2012 (49) | United Kingdom | 100 | To explore experiences of receiving mindfulness therapy within an early intervention program for psychosis | Grounded theory | Semistructured interviews | Aspects: individual level; facilitators: services |
| Braehler and Schwannauer, 2012 (41) | United Kingdom | 100 | To investigate how people adapt to psychosis and the influence of reflective function on adaptation | Constructivist grounded theory | Semistructured interviews, Adult Attachment Interview, reflective functioning rating | Aspects: individual level and interpersonal;facilitators: personal |
| Hon, 2012 (50) | United Kingdom | 100 | To gain an understanding of medication-taking practices | Grounded theory | Semistructured interviews | Aspects: individual level; facilitators: na |
| Bradshaw et al., 2012 (62) | United Kingdom | 100 | To develop and evaluate a healthy living intervention | Framework analysis | Semistructured Interviews | Aspects: individual level; facilitators: services |
| Lester et al., 2012 (63) | United Kingdom | 75 | To explore perspectives of early intervention services and primary care over time | Constructivist grounded theory | Semistructured interviews | Aspects: individual level; facilitators: services |
| Cadario et al., 2012 (29) | New Zealand | 75 | To examine the experience of FEP and the experience of accessing treatment | General inductive approach | Unstructured and semistructured interviews | Aspects: individual level; facilitators: na |
| Sin et al., 2012 (31) | United Kingdom | 25 | To explore the needs of siblings of people receiving early intervention services for FEP | Thematic analysis and framework analysis | Semistructured Interviews | Aspects: individual level and interpersonal; facilitators: na |
| Lam et al., 2011 (52) | China (Hong Kong) | 50 | To explore the meaning of FEP and meanings related to illness and recovery | A combination of various qualitative methods | Focus groups | Aspects: individual level, and interpersonal;facilitators: na |
| Lester et al., 2011 (51) | United Kingdom | 50 | To describe views of people referred to early intervention services within the context of their relationships | Constructivist grounded theory | Semistructured interviews | Aspects: individual level and interpersonal;facilitators: personal and services |
| Brown, 2011 (40) | Canada | 100 | To understand ways that FEP affects occupational performance | Thematic analysis | Semistructured interviews | Aspects: individual level and interpersonal;facilitators: na |
| McCann et al., 2011 (30) | Australia | 75 | To explore the experience of providing care to persons with FEP | Interpretative phenomenological analysis | Semistructured interviews | Aspects: individual level and interpersonal; facilitators: personal and social |
| Sin et al., 2008 (32) | United Kingdom | 50 | To explore the experiences and needs of siblings of persons who experienced FEP | Phenomenological approach | Semistructured interviews | Aspects: individual level and interpersonal;facilitators: na |
| Hirschfeld et al., 2005 (53) | United Kingdom | 75 | To explore the lives of young men before, during, and after FEP | Constructivist grounded theory | Semistructured interviews | Aspects: individual level; facilitators: personal |
| Larsen, 2004 (42) | Denmark | 100 | To examine how individuals generate meaning after FEP | Person-centered ethnographic approach | Documentary analysis, individual interviews, focus groups, surveys, time registration forms, written narratives | Aspects: individual level, interpersonal, and spiritual; facilitators: personal and services |
| Kilkku et al., 2003 (39) | Finland | 100 | To describe how people who experienced FEP experienced information giving and the meaning of information giving | Phenomenological approach | Unstructured interviews | Aspects: individual level; facilitators: personal and services |
| Newman et al., 2011 (54) | United Kingdom | 50 | To explore the impact of FEP on siblings’ experience of self, identity development, and family roles | Narrative analysis | Semistructured interviews | Aspects: individual level and interpersonal;facilitators: personal and social |
| Nilsen et al., 2016 (34) | Norway | 50 | To explore the benefits of receiving a psychoeducational family intervention after FEP | Systematic text condensation | Semistructured interviews | Aspects: individual level and interpersonal;facilitators: personal and services |
| Bourdeau et al., 2015 (55) | Canada (Quebec) | 25 | To explore the links between recovery stages, symptoms, function, and narrative development among people after FEP | Mixed methods: content analysis for qualitative data; descriptive discriminant analysis and t tests for quantitative data; unspecified method of integrating qualitative and quantitative findings | Psychosocial Rehabilitation Toolkit, Social Functioning Scale, Brief Psychiatric Rating Scale–Expanded, California Verbal Learning Test, Trail Making Test (A and B), structured interview (Indiana Psychiatric Illness Interview) | Aspects: individual level; facilitators: na |
| Subandi, 2015 (35) | Indonesia | 75 | To explore the process of recovery from FEP in a Javanese cultural setting | Ethnographic | Unstructured interviews | Aspects: individual level, interpersonal, and spiritual;facilitators: personal and spiritual |
| Gearing et al., 2014 (33) | United States | 50 | To examine pathways in youth self-determination and self-management of treatment for FEP | Content analysis | Semistructured interviews | Aspects: individual level; facilitators: na |
| de Wet et al., 2015 (56) | South Africa | 50 | To understand the experience of recovery from FEP among persons living in South Africa | Interpretative phenomenological analysis | Semistructured interviews | Aspects: individual level; facilitators: spiritual |
| Connell et al., 2015 (57) | Australia | 50 | To understand the process of change in self and its relationship to recovery | Interpretative phenomenological analysis | Interviews (not specified) | Aspects: individual level and spiritual; facilitators: personal |
| Brand et al., 2010 (37) | United Kingdom (London) | 100 | To explore the meaning of friendship for friends of people who have experienced FEP | Constructivist grounded theory | Semistructured interviews | Aspects: individual level and interpersonal;facilitators: na |
| Dunkley and Bates, 2015 (36) | Australia | 50 | To explore accounts of posttraumatic growth after FEP | Interpretative phenomenological analysis | Semistructured Interviews | Aspects: individual level and interpersonal; facilitators: personal, social, and services |
| McGrath et al., 2013 (58) | United Kingdom | 50 | To develop a theoretical understanding of recovery from FEP after childbirth | Constructivist grounded theory | Semistructured Interviews | Aspects: individual level and interpersonal;facilitators: personal and social |
| Pietruch and Jobson, 2012 (20) | United Kingdom | 25 | To investigate the relationship between posttraumatic growth and self-disclosure of posttraumatic stress symptoms and recovery | Quantitative descriptive study | Actual self-disclosure measure, Posttraumatic Growth Inventory, Process of Recovery Questionnaire | Aspects: individual level, interpersonal, and spiritual; facilitators: personal |
| Dunkley et al., 2007 (21) | Australia | 25 | To examine recovery from FEP in terms of trauma and posttraumatic growth | Quantitative: descriptive statistics; qualitative: thematic analysis | Quantitative: Recovery Style Questionnaire, Positive and Negative Syndrome Scale, Qualitative: semistructured interviews | Aspects: individual level and interpersonal; facilitators: na |
a
Methodological quality was assessed with the Mixed Methods Appraisal Toolkit (23). Values reflect the percentage of criteria met.
b
na, not applicable
| Study | Diagnosis | Race-ethnicity | Sex and sample size | Stakeholders | Age (M or range) |
|---|---|---|---|---|---|
| Barker et al., 2001 (27) | Schizophrenia | na | Service users: females (N=2), males (N=6); family: females (N=2), males (N=6) | Service users, family members | Service users, 37.5 |
| MacDonald et al., 2005 (43) | FEP | Caucasian (N=6) | Females (N=1), males (N=5) | Service users | 21.99 |
| Mackrell and Lavender, 2004 (44) | Psychotic disorder, schizophrenia, polymorphic disorder with symptoms of schizophrenia, bipolar disorder (N not specified) | Black Caribbean (N=2), black African (N=2), white British (N=2), Japanese (N=1), white Irish (N=1), Canadian (N=1), Portuguese (N=1), mixed from Sierra Leone (N=1) | Females (N=5), males (N=6) | Service users | na |
| O'Toole et al., 2004 (64) | Schizophrenia (N=10), schizoaffective disorder (N=2) | Mixed (N=2), white (N=5), Asian (N=2), African-Caribbean (N=3) | Females (N=3), males (N=9) | Service users | 26.58 |
| Connell et al., 2015 (38) | FEP | na | Females (N=6), males (N=20) | Service users | 21 |
| Krupa et al., 2010 (60) | FEP | Living in Canada (N=20), living in Australia (N=5) | Females (N=8), males (N=17) | Service users | 25.7 |
| Vodušek et al., 2014 (45) | “Non-affective psychosis” | na | Females (N=8), males (N=12) | Service users | 22.1 |
| Tanskanen et al., 2011 (28) | FEP | Service users: white British (N=3), white other (N=4), black African (N=3), black Caribbean (N=5), Asian-Bangladeshi (N=4), mixed race (N=2); caregivers: white British (N=5), white other (N=2), black Caribbean (N=1), mixed race (N=1) | Service users: females (N=6), males (N=15); caregivers: females (N=8), males (N=1) | Service users, caregivers | Service users, 26.5; caregivers, 26–68 |
| Windell and Norman, 2013 (46) | Schizophrenia (N=16), schizoaffective disorder (N=8), psychosis NOS (N=3), substance-induced psychosis (N=2), bipolar disorder (N=1) | na | Females (N=7), males (N=23) | Service users | 25.87 |
| Anderson et al., 2013 (59) | na | na | Females (N=4), males (N=12) | Service users | 22.5 |
| Stewart, 2013 (61) | Schizophrenia (N=14), schizoaffective disorder (N=6), depression (N=6), bipolar disorder (N=3), brief psychotic episode (N=1) | Born overseas (Hong Kong, Greece, Spain, and Fiji) (N=4), first-born Australians from immigrants (N=21), first-born Australians from nonimmigrants of English descent (N=5) | Females (N=15), males (N=15) | Service users | na |
| Eisenstadt et al., 2012 (47) | Paranoid schizophrenia (N=8), schizoaffective disorder (N=3), schizophreniform disorder (N=2), catatonic schizophrenia (N=1), psychosis NOS (N=1), persistent delusional disorder (N=1) | na | Females (N=4), males (N=12) | Service users | 20.13 |
| Harris et al., 2012 (48) | na | na | Females (N=3), males (N=5) | Service users | 29.25 |
| Ashcroft et al., 2012 (49) | “Persistent difficulties with either positive symptoms, or anxiety, or both” | White British (N=9) | Females (N=2), males (N=7) | Service users | 25.56 |
| Braehler and Schwannauer, 2012 (41) | “Schizophrenia-like” (N=4), schizoaffective disorder (N=1), bipolar disorder (N=2), psychotic depression (N=1) | na | Females (N=4), males (N=4) | Service users | 18.6 |
| Hon, 2012 (50) | Schizophrenia (N=6), schizoaffective disorder (N=3), bipolar disorder (N=3) | na | Females (N=5), males (N=7) | Service users | 25.16 |
| Bradshaw et al., 2012 (62) | na | White British (N=8), black African (N=2), South Asian (N=3) | Females (N=3), males (N=10) | Service users, health professionals | 25.5 |
| Lester et al., 2012 (63) | na | White British (N=16), Pakistani (N=2), Indian (N=2), mixed (N=1) | Females (N=7), males (N=14) | Service users | 23.28 |
| Cadario et al., 2012 (29) | Schizophrenia (N=8), bipolar disorder (N=4) | New Zealand European (N=7), New Zealand Māori (N=4), New Zealand Māori–Cook Island Māori (N=1) | Service users: females (N=5), males (N=7);caregivers: females (N=11), males (N=1) | Service users, primary caregivers | 15–18 |
| Sin et al., 2012 (31) | na | White British (N=18), black African (N=2), Asian (N=5), mixed (N=6) | Females (N=22), males (N=9) | Siblings | 22.7 |
| Lam et al., 2011 (52) | Paranoid schizophrenia (N=4), “unspecified psychosis” (N=1), acute psychotic disorder (N=1) | Cantonese-speaking Chinese (N=6) | Females (N=3), males (N=3) | Service users | 25 |
| Lester et al., 2011 (51) | na | White British (N=25), white other (N=1), Irish (N=1), Pakistani (N=3), Indian (N=2), black Caribbean (N=1), black African (N=1) | Females (N=10), males (N=24) | Service users | 22 |
| Brown, 2011 (40) | na | na | Females (N=3), males (N=2) | Service users | 24–29 |
| McCann et al., 2011 (30) | na | English speaking (N=16), Vietnamese speaking (N=1), English and Tagalog speaking (N=1), English and Spanish speaking (N=1), English and Romanian speaking (N=1) | Females (N=17), males (N=3) | Primary caregivers | 21–76 |
| Sin et al., 2008 (32) | na | White British (N=7), Pakistani (N=1), black African (N=1), mixed (N=1) | Females (N=8), males (N=2) | Siblings | 22.8 |
| Hirschfeld et al., 2005 (53) | na | English (N=5), Irish-born South African (N=1) | Males (N=6) | Service users | 23.3 |
| Larsen, 2004 (42) | na | na | na | Service users, health professionals | na |
| Kilkku et al., 2003 (39) | na | na | na | Service users | na |
| Newman et al., 2011 (54) | na | White British (N=4) | Females (N=2), males (N=2) | Siblings | 20.75 |
| Nilsen et al., 2016 (34) | Schizophrenia (N=10), schizoaffective disorder (N=1), psychosis NOS (N=1) | White (N=9), Asian (N=3) | Service users: females (N=7), males (N=5)family: females (N=8), males (N=6) | Service users, family members | Service users, 26.78; family members, 56 |
| Bourdeau et al., 2015 (55) | Schizophrenia (N=29), psychosis NOS (N=47), bipolar disorder (N=4), schizoaffective disorder (N=3), psychotic depression (N=3), substance-induced psychosis (N=1) | Caucasian (N=36), African Caribbean (N=9), Asian (N=1), Latin American (N=1) | Females (N=11), males (N=36) | Service users | 26 |
| Subandi, 2015 (35) | FEP | Javanese | Females (N=6), males (N=1) | Service users, family members | na |
| Gearing et al., 2014 (33) | Schizophrenia (N=3), bipolar disorder (N=5), major depression (N=1), psychosis NOS (N=2) | Caucasian (N=6), Hispanic (N=3), Asian (N=2), African American (N=1) | Service users: females (N=6), males (N=6);family: females (N=13), males (N=3) | Service users, family members | Service users, 19.3; family members, 53.1 |
| de Wet et al., 2015 (56) | Schizophrenia (N=5), schizophreniform disorder (N=2) | “Coloured” (N=6), white (N=1) | Females (N=3), males (N=4) | Service users | 35.29 |
| Connell et al., 2015 (57) | Bipolar disorder (N=5), schizophrenia (N=3), schizophreniform disorder (N=2), substance-induced psychosis (N=2) | Country of birth: Australia (N=10), “overseas” (N=2) | Females (N=3), males (N=9) | Service users | 21 |
| Brand et al., 2010 (37) | na | White British (N=5), black British (N=1), mixed European (N=1) | Females (N=4), males (N=3) | Friends | 21 |
| Dunkley and Bates, 2015 (36) | FEP | na | Service users: females (N=3), males (N=7);romantic partners: females (N=2); parents: females (N=4), males (N=1) | Service users, romantic partners, family members | 22–28 |
| McGrath et al., 2013 (58) | Puerperal psychosis (N=11), postpartum depression with psychotic features (N=1) | White British (N=12) | Females (N=12) | Service users | 35.6 |
| Pietruch and Jobson, 2012 (20) | na | na | Females (N=12), males (N=22) | Service users | 25.67 |
| Dunkley et al., 2007 (21) | Bipolar disorder (N=2) | na | Females (N=1), males (N=1) | Service users | 23.5 |
Quality appraisal scores for each study are presented in Table 1. Thirteen studies met 50% of the quality appraisal criteria (28,32–34,36,46,51,52,54,56–59). Eleven studies met 100% of the criteria (37,39,40–44,49,50,61,62), nine studies met 75% of the criteria (27,29,30,35,38,48,53,60,63), and seven studies met 25% of the criteria (20,21,31,45,47,55,64). We decided to retain articles with lower-quality appraisal scores because they also featured rich quotations describing positive change and because we wanted to be inclusive given the novel nature of our inquiry.
Synthesis of Included Studies
Our analysis yielded three themes that illustrate the ways in which service users and their families and friends experienced positive change after FEP and four themes pertaining to the factors facilitating such change. These analytical themes are directly related to our research questions. Themes identified by and present in each study are shown in Table 1. We also identified one theme describing the broader, negative experiences associated with FEP that were not explicitly associated with positive changes in the included studies. This descriptive theme does not directly answer our research questions but serves to contextualize the analytical theme findings.
Broader, Negative Experiences Associated With FEP
The included studies detailed negative contexts, consequences, and experiences associated with FEP. Such suffering seemed characteristic to the experience of FEP. Positive change, our study’s focus, followed this suffering or resulted from receiving mental health services. Many studies described FEP’s negative impact on the psychological lives of participants. This included cognitive difficulties (21,29,33,38–41) and negative emotions (21,27–33,35–39,41–58) that were difficult to cope with (27,36,37,41,47,58). Some participants had difficulty accepting that they or their relatives had experienced FEP (27,30,33,46,51) and struggled with making sense of the experience of FEP (21,27,37,39,57,58). In addition, service users and families described help-seeking barriers, negative help-seeking experiences (21,27–29,35,37,40,48,59), and dissatisfaction with care received (21,27–30,33,35–37,39,40,42,46–48,50–52,57,59–63). Many service users reported no longer feeling in control of their lives and destiny (21,36,39–41,46,48,50,53,57–59). Many participants described a profound loss of self (21,27–29,31,33,35,38,40,41,43,45,46,48,51–53,55,57,58,60) and a loss of or difficulties establishing connections with others (21,27,28,30–33,35–38,40,41,43–45,47,50,51,53–58,60). Some participants became reluctant to attend religious institutions or avoided spiritual practices out of fear of a resurgence of unpleasant inner experiences (35,42). Negative experiences were sometimes perceived as impeding the recovery process (38,41,46,57).
Positive Changes After FEP
After FEP, service users, family members, and friends experienced individual-level positive change, interpersonal positive change, and religious or spiritual positive change.
Individual-level positive change.
In all but one of the 40 studies (28), FEP was described as leading to individual-level positive change—that is, changes occurring in the psychological core of individuals and at the levels of personality and lifestyles. This theme was developed through combining three subthemes: insight and clarity; personality, outlook, and skills; and health, lifestyle, and interests.
Studies described how service users, families, and friends developed new insights (34,35,43,52,53,57) and obtained greater clarity about the self and others after FEP. FEP was perceived as an opportunity to reassess one’s life (21,36,43,46,48,52,57). It helped service users realize that time is precious (36,43,52) and should not be wasted (57) and that even adversities could be leveraged to good ends (58). Furthermore, service users found new meaning in life after experiencing FEP (29,38,39,41,48,53,54,57,58) through assigning a positive, constructive meaning to their experiences (57), viewing psychotic experiences as worthy of integration with aspects of the self (29,39,41,48,57,58), and finding new meaning in existence itself (53,54). After FEP, service users and families felt wiser (43,44,52,53) and said they had greater self-understanding and acceptance (21,27,29,32,34–36,38–41,45,47–49,53–55,64). Studies also described how service users developed new value systems (32,35,38,43,52,57,60) with greater emphasis on the importance of others (32) and less emphasis on materialism (35), substance use (38,60), and what they felt were society’s arbitrary role expectations (35,52). Finally, some studies described service users and their family members as reporting experiencing improved, clearer, more open thinking after FEP (52,54,63); becoming more imaginative (53); feeling smarter (52); and being less prone to obsessive thinking (49). Service users also reported better metacognitive capacities (49), being more reflective (36,49), having more foresight (52), and feeling happier and more in touch with their feelings (35,45,48).
With respect to new insights about others, the experience of FEP highlighted to service users and family members the goodness, importance, qualities, and roles of family and friends (21,30,32,36,41,43,51,52,59,61). They gained better insight into who their true friends were (21,43,52). Both service users and family members became more aware of others caring for them (36,38,43,52,59,61); realized that others can offer support in times of need (30,36); and gained a new appreciation for the value of helping others (52,54,58), especially those experiencing mental health concerns (54,58,61).
Studies described FEP as a transformative experience affecting service users’ and families' personality, outlook, and skills. The experience led service users to a new, improved identity (27,31,36,51,57) and a stronger self (20,31,36–38,48,52,56,57). They now felt more authentic and closer to their inner core (27,38,42,45). After FEP, service users and families experienced self-development (27,31,32,35,36,42,45,48,52,57) and became more mature and responsible, especially with respect to their roles within the family (21,32,34,36,38,40,41,46,47,52–54). They also described becoming self-reliant (21,27,36,38,55,57,64), acquiring personal control (36,45,49), and becoming more willing to deal with problems. Becoming independent from others through a process of individuation was described as a key dimension of positive change by service users in two studies (21,27).
Furthermore, studies described how, after FEP, some individuals had a better attitude (37), demeanor (21), and sense of confidence (34–36,38,39,41,48,50,52,53,57); were happier (35) and more open to experiences and emotions (21,32,34–37,51,55); were more empathetic (21,31,32,36,52,58) and kinder (21,30,32,36,52,58); knew more about their own resources and how they reacted and dealt with stress (39); and were better able to handle stress and negative emotions (30–35,38,39,49,58,64). Finally, service users described learning new skills (46), such as time and resource management (52)
Studies also described changes to health, lifestyle, and interests. After FEP, service users improved their quality of life by making their lives simpler, more enjoyable, and more meaningful (21,36,46,57,60) by reducing substance use (29,36,38,43,46,60), taking better care of themselves (46), practicing better sleep habits (46), exercising (35,52), and setting valued goals (for example, becoming physically fit) (36). Service users also felt that the experience of FEP opened up possibilities that otherwise would not have been available (20,36,40,45) and that led to new activities (46) and better functional roles, such as new employment avenues (35,58). Some service users described developing new interests (21,36,46), such as photography (46).
Interpersonal positive change.
Twenty-two studies reported how the experience of FEP may have positively influenced service users’ and families’ relationships and the place they occupied within society (20,21,30–32,34,36–38,40–44,46,51,52,54,57–61). This theme comprised two subthemes: relationships with family and friends and place or role in society. Studies described how FEP led to improved, closer, deeper, more valued, and stronger family bonds (20,21,30–32,36,38,40,41,51,54,57–59) and improved bonds between service users and friends (37,52). FEP also led families to become more resilient to struggles through improvements in communication (30,31,34,41,51), problem solving (30–32,36,51), and coping and emotional regulation (30,31). Studies also described how families spent more time together (36,60) and became more harmonious (36), considerate (30,31,54), caring, and willing to put effort into their relationships with each other (36).
Some studies reported how service users let go of unhealthy relationships. These included romances that had come to be seen as unhealthy (42) and friendships now perceived as less valuable and as harmful, unstable, and superficial (43,44,52). Service users also described shedding relations with friends whom they perceived as lacking empathy (44). In contrast, service users described rekindling valuable relationships with individuals with whom they had lost touch before experiencing FEP (52) and establishing precious new friendships (41), including with others who had experienced psychosis (46,59).
Studies described how, after FEP, service users and family members had a changed sense of their role in society, desiring to give back to others by supporting individuals who had experienced psychosis or other mental health problems through peer support (58,61). Families also reported raising awareness about mental illnesses and challenging the stigma of mental illness within their family and in society at large (31,54).
Religious or spiritual-level positive change.
Four studies reported how FEP led service users to experience increased levels of spirituality and religiosity (20,28,35,57), which is consistent with models of posttraumatic growth or how spiritual groups may experience growth after adversity (8). For instance, service users prayed more (35) and became more involved in religious institutions (28,35,57). One service user reported positive religious experiences, such as a spiritual opening up of the heart, while another felt that FEP enabled him to repent and accept his destiny (35), which he perceived as beneficial.
Facilitators of Positive Changes After FEP
Facilitators of positive change were derived from one cross-sectional quantitative study (20) and from quotations in the qualitative studies. We included only factors and processes described specifically as facilitating positive change. These factors were personal factors, social factors, religious or spiritual factors, and factors related to mental health care.
Personal factors.
Personal factors facilitating positive change were related to psychological processes, skills, and coping strategies employed to deal with FEP and facilitate recovery. Psychological processes facilitating positive change included experiencing a sense of hope for the future (30,57), developing greater awareness of the world (53), making sense of and actively contemplating how the impact of FEP could be positive (38,39,42,54), gaining a heightened sense of agency (36), and having the capacity to infer the mental states of others (38,41). Studies also described how positive changes were facilitated by being more mature (34), more motivated to achieve goals (35,36,54,57,58), and more determined to deal with current and future difficulties (54,57). Studies also described how positive change was facilitated by actively strategizing for recovery (57), proactively deciding and attempting to effect positive change (43,57), and becoming passionate about helping others (54,58).
Skills employed by service users to facilitate positive change included improving self-care to support recovery efforts (35,46), developing or rediscovering talents and abilities (46), and improving physical living conditions (35). Engaging in valued ongoing or new functional activities (such as school or work) was also linked to positive change among service users (41,46). Coping strategies facilitating positive change included those learned through specific interventions and others acquired by service users on their own. They included developing strategies to deal with disturbing thoughts, thinking about thinking (metacognition), identifying the positive aspects of adverse situations (57), and having a positive attitude (30). Furthermore, being able to communicate, discuss, and disclose one’s thoughts and feelings was also linked to positive change (20,30,34,38,41,51).
Finally, the process of recovery (20,39,41,57) was also reported to contribute to positive change. An integrative recovery style (20,41) that integrates psychotic experiences into a coherent life narrative contributed more to positive change than attempting to seal over and forget about psychotic experiences (65).
Social factors.
Studies described positive change as being facilitated by social factors, such as stronger connections with community (35) and having one’s beliefs about mental illness challenged by others. Caregivers’ being there for service users (36,46) and having qualities such as honesty, trustworthiness, and genuine interest in service users (30) were linked to positive change among service users. Among caregivers, the process of caring for a loved one with psychosis facilitated positive change (30,54).
Religious or spiritual factors.
Aspects of mental health care services.
Factors related to mental health care services were the most frequently endorsed facilitators of positive change in the included studies. They included factors related to service delivery, various interventions in which individuals and family members participated, and information provided by mental health professionals.
Service users reported positive change as having been facilitated by services that emphasized self-efficacy (27), participation in activities (63), recovery (46), hope (61), self-acceptance (64), and stress management (48). Services that placed less emphasis on diagnosis but instead stressed each individual’s specific experience and narrative (61) also facilitated positive change.
Because of its recognized value in treating FEP, medication was seen as facilitating positive change (62,63). Positive change was also seen as having been facilitated by family interventions focused on problem solving (34). Learning new ways of coping, such as through mindfulness meditation (49), was linked to positive change (51). Peer support services facilitated positive change through the reciprocal nature of the relationship between peers and the normalizing, nonthreatening environment in which these relationships occur (48,51,61). Alcoholics Anonymous and Narcotics Anonymous were specifically mentioned as peer-based programs that brought about positive change (60). Finally, receiving meaningful and pertinent information about FEP and its treatment from mental health care professionals was also important (39).
Discussion and Conclusions
This study aimed to synthesize scientific and peer-reviewed qualitative, quantitative, and mixed-methods literature about positive change after FEP as experienced by service users, their families and friends, as well as the factors and processes that facilitate such positive change. It revealed that service users and their families and friends experienced positive change at the individual, interpersonal, and religious or spiritual levels, along with the suffering that is inherent in FEP. Until now, no systematic review has examined positive change after a serious mental illness. Our synthesis can make early intervention services for psychosis more concordant with their foundational philosophy of offering evidence-informed, strengths-based services that emphasize optimism (66).
The domains of positive change described in these studies are consistent with domains found in investigations of positive change after other adversities (4–7), with the most frequently endorsed aspect pertaining to the development of new insights and shifts in one’s self. The similarities between positive changes experienced after physical and mental health problems support Frank’s (67) findings that passages through suffering various adversities follow archetypal patterns that can be framed as illness, chaos, and quest narratives. Within Frank’s conceptualization, our findings of positive change seem to fall largely within the archetype of quest narratives.
A key positive change was that FEP spurred service users and families to give back to society by becoming peer support workers and engaging in activism. Although “giving back” as a positive change may follow other adversities, this dimension has not usually been a feature in current conceptualizations of postadversity positive change (8–10). Our synthesis thus meaningfully extends the spectrum of postadversity positive change.
Although psychosis is generally associated with significant cognitive impairments (68), service users in a few of the studies reported thinking more clearly, gaining a broader perspective, and feeling smarter after FEP. Such improvements may be related to heightened clarity of goals and values rather than improvements in cognitive functioning per se. Nonetheless, it may be valuable to further investigate these subjective perceptions of changes in cognition and their role in contributing to recovery.
Families and friends of service users reported experiencing positive changes after their loved one’s FEP, despite also experiencing caregiving burden. Although only a few studies reported this finding, it is consistent with other studies showing that posttraumatic growth occurs among family members of individuals who have experienced several psychotic episodes (69) or other traumas (70) and suggests that being there for a person who is suffering can be rewarding.
Our synthesis suggests that positive changes were facilitated by factors within individuals, their social and religious or spiritual lives, and the structural and relational aspects of the care they received. This is consistent with ecological models of resilience (71) as well as with known facilitators of positive change after other traumas (5).
The most frequently perceived facilitator of positive change after FEP was receiving care that was seen as appropriate, positive, and strengths enhancing, usually at early intervention services. One reason for this finding may be that most of the reviewed studies recruited participants from early intervention services. However, other studies have shown that programs offering broad-spectrum, high-quality mental health services and supports are perceived as important by service users (72–74), further supporting our conclusion. Of note, studies of positive change after other types of adversities do not point to the primacy of treatment or services as a facilitator.
Although most of the studies reviewed provided information about the phenomenology of positive change, fewer reported on factors facilitating it. Given that our synthesis was based largely on qualitative studies, these facilitators should not be viewed as causally related (in a quantitative sense) to aspects of positive change. However, they do represent avenues for further research.
Facilitators were sometimes difficult to distinguish from aspects of positive change. For instance, a commitment to improving relationships was a positive change that led to a more peaceful home environment. This in turn served as a facilitating factor promoting further growth in the interpersonal sphere. Positive change in one domain may spur positive change in another. Thus positive change and its facilitators can form a virtuous circle, wherein each gain facilitates another. Positive changes may also increase an individual’s capacity to cope with future challenges (for example, by becoming closer to family, an individual may receive new support in the face of future life challenges).
The relationship between recovery and positive change was not unidirectional. At times, positive change seemed synonymous with recovery, echoing work by Andersen and colleagues (75). In other instances, recovery was seen as promoting positive change, consistent with the theoretical framework that posttraumatic growth is a state beyond recovery (8,76). In yet another scenario, positive change promoted recovery. Distinguishing between positive change and recovery may be difficult, and it may be more meaningful to simply defer to service users’ own conceptions of recovery and positive change or to view the relationship between recovery and positive change as fluid.
It is important to bear in mind that youth represents a critical developmental period wherein young people often grapple with their aspirations, values, identity, and place in society. Therefore, youths with FEP may already be on a path of change, suggesting that positive changes after psychosis may result from interactions between responses to psychosis and typical developmental processes.
Implications for Service Delivery
Regardless of any positive change that psychosis may precipitate, it remains a devastating and traumatic illness for many individuals and their loved ones and one that we do not seek to characterize as desirable. However, our synthesis provides an evidence base for services striving to promote growth among service users. Positive changes should be fostered by services because, in addition to being valuable on their own, they may enhance resilience and lead to better outcomes. With the knowledge that positive change can occur after FEP, services can offer specific interventions that can both create conditions conducive to positive change and capitalize on these changes. Simply informing service users, families, and friends that positive change is known to occur after adversity could improve their outlook and, thereby, their outcomes.
Strengths
This review dealt with a subject that has hitherto received little attention and has the potential to shift the narrative in regard to psychosis. Adopting a rarely used but apt methodology, we maintained a high level of rigor and conducted a synthesis that remained close to the data presented in the articles. Finally, the majority of included studies were of relatively high methodological quality.
Limitations
We recognize that gray literature, particularly first-person accounts, could have yielded rich data about our subject of interest (11,77). However, choosing a more conservative approach, we included only peer-reviewed, scientific evidence. Furthermore, most of the primary studies reviewed were not conducted specifically to discover aspects or facilitators of positive change. Nevertheless, we chose to include such studies to arrive at the most comprehensive synthesis of literature on our topic of interest.
Although we present religion and spiritualty in the context of positive changes and facilitators, it should be noted that these are poorly studied dimensions of positive change after FEP. Little is known about the extent to which FEP precipitates change in the sphere of religion or spirituality, whether such change is viewed as positive, and whether persons with a religious or spiritual outlook are likelier to experience positive change after FEP.
Most of the studies reviewed included samples drawn from early intervention services. As such, our findings may be more pertinent to individuals receiving these services than to those receiving standard care. However, our findings are consistent with those of many other studies reporting positive change. Finally, it was impossible to draw any conclusions about the frequency at which particular positive changes occurred. This may be a feature of qualitative systematic reviews in general.
Future Directions
This review highlights the need for detailed, prospective, and high-quality investigations of positive change after FEP. Future research should be explicitly designed with the objective of examining positive change from the perspectives of service users, their families, their friends, and treatment providers. Such investigations could benefit from the inclusion of qualitative methods suited to elucidating subjective experiences and quantitative methods that can determine the extent to which positive change occurs, at what point in the course of illness it occurs, how it is manifested, at what frequency its manifestations occur, what factors facilitate it, and its relationship with other outcomes, such as recovery, resilience, and remission.
Acknowledgments
The authors thank Pierre Pluye, M.D., P.h.D., Angela Lambrou, M.L.I.S., Kevin MacDonald, M.A., and Geraldine Etienne, M.A., for assistance in manuscript preparation.
Footnote
Funding for this study was from the Department of Psychiatry, McGill University; Fonds de Recherche du Québec-Santé; and the Canadian Institutes of Health Research.
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Information & Authors
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Published In
Cover: Understanding, by Michael Olszewski, 1984. Dyed and pleated silk plain weave with silk embroidery. Philadelphia Museum of Art, gift of Nancy and David Bergman, 2015.
History
Received: 20 December 2016
Revision received: 9 May 2017
Accepted: 7 July 2017
Published online: 1 November 2017
Published in print: January 01, 2018
Keywords
Authors
Competing Interests
Dr. Malla reports receipt of research funds or honoraria from Janssen Canada, Lundbeck, and Otsuka. The other authors report no financial relationships with commercial interests.
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