The International Journal of Psychosocial Rehabilitation
A First-Person Exploration of the Experience
of Academic Reintegration after First Episode Psychosis




Hiba Zafran, B.Sc. (O.T.), MSc.
Faculty Lecturer and PhD Candidate
School of Physical and Occupational Therapy
McGill University
 McGill University Health Centre.


Beverlea Tallant, PhD., O.T. (C)
 Retired Professor
Occupational Therapy program
School of Physical and Occupational Therapy
McGill University. 
Email: beverlea.tallant@mcgill.ca


Isabelle Gelinas, B.Sc. (O.T.), Ph.D.
Researcher
Center for Interdisciplinary Research in Rehabilitation
Greater Montreal, Canada
Associate Professor
School of Physical and Occupational Therapy
McGill University
Email: isabelle.gelinas@mcgill.ca

Citation:
Zafran H, Tallant B, & Gelinas I (2012). A First-Person Exploration of the Experienceof Academic Reintegration
after First Episode Psychosis
.  International Journal of Psychosocial Rehabilitation. Vol 16(1) 27-43


Corresponding Mailing Address:
Allan Memorial Institute
1025 Ave des Pins West
Occupational Therapy Department, P2.168
Montreal, Quebec H3A 1A1 Canada
Telephone: 514.934.1934 ext. 34168
Email: hiba.zafran@mcgill.ca


Abstract
Many young people referred to occupational therapy desire to return to school and their student role after a first episode of psychosis. However, factors that mediate the process and experience of academic reintegration of young adults after a psychotic episode are unknown. This qualitative pilot study explored the phenomenon of returning to post-secondary school from the first-person perspective of five young adults in Montreal, Canada. They were interviewed individually to elicit narratives of their return to school experiences. A phenomenological lens was used in the qualitative analyses. Obstacles to returning to school included side effects of medications, cognitive difficulties, self-stigma and the fear of failure. Facilitators included desire, psychoeducation, social support, daily activities and occupational therapy interventions. Meaning-making for these five persons revolved around the overarching themes of ‘readiness’, ‘hope’ and ‘maturity’ in the process of developing selfhood after experiencing psychosis. These themes emerged as integral to understanding the successful experience of academic reintegration for the five participants, and in informing rehabilitation services.
Declaration of Interest: None
Key words: First episode psychosis, post-secondary school, qualitative research, readiness, occupational therapy



Introduction
The mission of early psychosis intervention is to prevent or attenuate the devastating effects of psychotic-spectrum disorders in youth.  This is known as ‘secondary prevention’ whereby medical and psychosocial sequelae of psychotic illnesses, such as unemployment and loss of social networks, are targeted and minimized to improve recovery and long-term outcomes (Jackson & Birchwood, 1996; McGorry, 1992). In 2005, the International Early Psychosis Association (IEPA) and World Health Organization (W.H.O) issued a consensus statement promoting recovery as part of comprehensive early psychosis programs.  The defined outcome is “2 years after diagnosis, 90% of affected individuals have employment/education rates similar to their age-/gender matched peers” (Bertolote & McGorry, 2005, p.s116).

Developmental models of the emergence of a first episode of psychosis (FEP) describe a prodromal period where deterioration in functioning can be seen from adolescence into young adulthood (Maier, Cornblatt, & Merikangas, 2003). This necessarily impacts on a person’s primary student role. Investigations conducted in the United States found that early-onset psychiatric disorders were responsible for 3.5 million persons not completing high school and a further 4.3 million who were unable to complete college (Kessler, Foster, Saunders & Stang, 1995). When it is noted in the research, educational status is more precarious than employment after a FEP (CMHA, 2004). In a 7.5 year follow-up of 341 persons receiving early intervention, 43% were found to be employed while only 8% were studying (Harris, Waghorn, Harrigan, Henry, Jackson, Schwartz et al, 2008).  It may be that “functional changes [are] more problematic in school than work” (Woodside, Krupa & Pockock, 2007, p.129). 

As an occupational therapist working on an early psychosis intervention team, I (researcher and first author) documented the needs of the young adults experiencing a FEP with whom I worked between June 2005 and April 2006. Forty two people aged 17-30 were referred to occupational therapy, of which 74% stated either returning to, or maintenance at, college or university as their goal. The temporal pattern of referral mirrored the stress of school registration, midterms and finals.


Figure 1 Pattern of occupational therapy referrals, 2005-2006 (N=42)



Narratives of desires and attempts to return to school after mental illness onset are available in the literature (Shephard, 1993; Padron, 2006). Successful outcomes and satisfaction with Supported Education Programs (SEP) by persons with a severe and persistent mental illness are also well-documented (Collins, Bybee & Mowbray, 1998; Cooper, 1993; Unger 1993). However, there is little published, from an academic rehabilitation perspective, for a heterogeneous early psychosis population treated within an early intervention model.  Young adults treated for a FEP have diagnoses and ages which overlap with, but are not representative of, the SEP population (Neria, Bromet, Sievers, Lavelle & Fochtmann, 2002).  Further, the research on SEP’s in the United States may not translate directly to the population of concern in Canada because the academic, clinical and governmental structures are not the same.
In Montreal, early psychosis academic rehabilitation efforts, for those aged 18 and over, with the goal of post-secondary schooling are rooted in clinical experience and judgement. This includes case-by-case networking with schools and Offices of Students with Disabilities’ (OSD), which provide the partial equivalent of on-site SEP services. A pre-study survey with the OSD’s of three of the predominant Anglophone post-secondary schools in Montreal revealed that students with a psychiatric disability are their largest growing population. From the OSD staff’s viewpoint, the obstacles are: (1) not enough students with mental illness accessing their services because of stigma (2) some OSD staff feeling that they did not have the training to provide useful support (3) poor accessibility to clinicians when needed and (4) lack of governmental funding for students diagnosed with mental illness.

If a person-centered approach to empower an individual is to be applied in the rehabilitation intervention (Corring & Cook, 1999), it is important to understand the experience of returning to school for this population from their perspective, prior to designing interventions.  The purpose of this qualitative pilot study, using an interview-based design, was to phenomenologically explore the experience of young adults returning to school following a FEP diagnosis in the previous five years. This is especially relevant considering that mental health is subjectively experienced and often self-defined (Rebeiro & Cook, 1999).

Methods
Participants
After obtaining ethical approval from the McGill University Health Centre (MUHC), typical case purposive sampling identified five post-secondary students followed as outpatients by an early intervention team. All five were medically stable, able to give informed consent, and engaged with their primary therapist. They had also participated in developmentally appropriate occupational therapy, psychiatric and/or day program activities.

Data collection
A semi-structured interview was developed for this study based on the literature review and the phenomena in question.  It was screened with a 25 year old woman who had experienced a psychotic depression three years prior and was currently completing a graduate degree. Subsequently, no further changes were made to the semi-structured interview questions. The one-on-one audio-taped interviews were conducted by the first author, ranged between 1-2 hours and took place between November 2005 and February 2006 at McGill University’s School of Physical and Occupational Therapy. Participants were asked each of the primary questions, which were exploratory and open-ended (see Table 1). In-depth discussion was guided by the participant’s answers. I (first author) kept a post-interview journal of thoughts, feelings and impressions to promote the maintenance of a critical reflexive stance.

Table 1: Primary questions for the semi-structured interview

How did the beginning of your illness affect your schooling?

Why did you decide to return to school?

What were your expectations? Your fears?

What helped you get back into school?

What made it difficult?

Can you think of anything now that may have been useful then?

 

Data Analysis
The audio-taped data were transcribed verbatim, and were analyzed using both categorization and contiguous methods subsequent to immersion in the data (Maxwell & Miller, 2002).  Each participant’s narrative was chronologically reconstructed to understand experiences from a temporal point of view. This was complemented by triangulation with information from the medical chart. Original interview narratives were then examined for themes pertaining to the research inquiry, and these were coded into meaningful themes. Data analysis was also triangulated by conducting a structural analysis of the narratives (Labov, 1982); which meant that following data immersion, transcripts were annotated for patterns of pauses, voice inflections, increased or decreased verbosity and emotional cues for both myself as interviewer and the interviewee. Each transcript was then analysed structurally, that is, an intersubjective interpretation of patterns of emotionality, pauses and the kinds of prompts used by the researcher.  Notes were kept in the margins of the transcripts as well as organized by seemingly more dominant insights.  Themes and processes were then compared across the five interviews. Individual stories were returned to in an iterative process of analysis to verify and clarify the emergent themes, and their relation to each other, as well as the iterative use of available literature and theory. Each participant received a written summary of the research results in person, and had the opportunity to give feedback with regards to the authenticity of the themes prior to completing the data analysis.

Although a phenomenological theoretical lens was maintained throughout the interpretive understanding of the meaning-making process of participants, theoretical triangulation occurred due to my clinical bias towards developmental and psychiatric rehabilitation frameworks.  This was addressed through on-going reflective discussions with academic supervisors, maintaining an audit trail of the creation of themes, and post-interview memos. The ensuing thematic categories underwent independent review by the second and third authors.

Criteria for scientific rigor were attained through the triangulation of data analysis. As well, data re-coding was undertaken by peers and feedback from participants with ensuing revisions, to ensure the trustworthiness of the final interpretations.  Transferability and theoretical saturation were not achieved in this study given the small sample size taken from an inherently variable population.  It is noted that these preliminary results only pertain to the described population in terms of age range, experience and community status.  Quotes from the participants in the study are reported in italicized font for readers to be able to compare the relevance of the results to their own clinical and personal experiences. 

Results
The five participants were 20-25 years old, and included one female. All were diagnosed in the previous five years or less. They were dependent upon their families for their living and financial situation. With the exception of Bill, all the participants continued to experience residual symptomatology in varying intensities and forms.

Table 2: Description of the participants (pseudonyms assigned, N=5)

 

Alex

Bill

Cory

Debbie

Evan

Age

21

22

25

23

20

Gender

Origin

USA

USA

Canada

Caribbean

Canada

Age @ onset

17

19

22

20

17

Duration Untreated Psychosis  (months)

12

18

10

0.5

4

Current diagnosis

Schizophrenia

Schizophrenia

Psychosis not otherwise specified

Adjustment disorder

Psychotic depression

History of drug use

 

 

Time away from school (months)

None

5

24

7

12

Duration of return to school (months)

Stopped

2 months ago

24

10

7

2

Education level

College

Y2

University

UIII

College

Completed

University

UII

College

Y1

Program

Business

Engineering

Social science

Art history

Pure science

Status

Part Time

Full Time

Part Time

Part Time

Part Time

Employment history

 

 

Current employment

 

 

Part Time

Part Time

 

 

They had been enrolled in full time course loads prior to the illness onset, with some holding part-time jobs and/or living independently at the time. All began to withdraw socially either due to the onset of paranoid symptoms or increased study efforts to overcome emergent cognitive difficulties. Alex, Cory and Evan attempted to cope by self-medicating with illicit drugs, “it’s kinda self-help”.  Drugs were also used in terms of building an alternative peer network that was not based on academic performance. Alex said “there were some kids and they were good but some were kind of older and they smoked marijuana, so [I spent time with them]…”

All reported non-specific cognitive and affective signs prior to their decompensation such as insomnia and increased fears, anxieties or worries.  Most had difficulty concentrating or remembering material that had been studied due to racing thoughts or paranoid anxiety. Debbie and Evan reported increased sadness and anger with suicidal ideation. None attempted suicide during this period.

All of the participants managed to stay in school while symptomatic and untreated for periods ranging between 3 months (Evan) to over a year. “No one knew I was unwell, only I knew…but I didn’t think it was a…I, I didn’t think it was like an episode, I considered it as something normal”; “I don’t think anyone knew anything was wrong.  Even with all the anxiety and thoughts racing I’m pretty good at keeping a calm face, so…”  Evan was the only one to have been approached by school staff regarding his well-being.  The others were not identified by their schools, in spite of failing grades or aggressive paranoid behaviour.  All participants were ultimately brought to the attention of the health care system by family or church members.

At the time of the interview, four were still actively engaged in post-secondary schooling, while Alex had chosen to quit his education goals two months prior to his interview.  All five participants were dependent on their families for their living and financial situations.  Debbie lived alone but was financed by her father.  All five used public transport, with commuting times varying between 20-60 minutes to travel to school, although Cory had just bought a car, which he said cut down significantly on his commuting time.  All were engaged in community-based leisure, social or spiritual activities beyond studying, with the four who were in school having developed significant social networks within school, both formally (organized student clubs) and informally. All five participants were comfortable with me as interviewer due to previous interactions in the clinical context. This allowed for greater depth of exploration.
Impact on the Self

The objective of this study was to use a phenomenological approach to understand the school experience of these five persons over time.   Therefore, it is important to initially examine how this was narrated by the participants.   
 
All the participants had a difficult time finding the right words to describe their experience.  This was understood in terms of cognitive impairments, verbosity and the use of self-depreciative humour as a defensive or coping strategy.   Questions pertaining to long term memory elicited either long pauses or repetitive answers that did not add further to the narrative.  With the exception of Cory, who is the eldest in the sample and the only one who was completely symptom-free during the research period, participants had difficulty reflecting on and abstracting about their illness and its impact on their schooling in any specific manner.  This difficulty in conceptualization and verbalization seemed to be related to cognitive deficits such as long term memory, abstraction and self-evaluation.  It also appeared related to each participant’s self-concept and their continued difficulty in expressing the existence of an illness out loud.  Examples of these moments during the interviews follow, with underlined words indicating tonal emphasis:
“[5 second pause] I can’t really say what the illness part was, I don’t really know that much about it [10 second pause] but I think it was a little bit of both, the illness, and school…yeah” (Alex, slowed speech)

“I think the hardest thing I feel is, ummm, when you get a low grade, it’s based on your…it’s based on my capability…well like ‘coz of my illness…that’s what makes it for me hard…to accept…because I work so hard, and I try to do the best that I can, and I guess, it’s not really about working hard, it’s about quality?”(Cory, unsure of his answer)

The structural analyses of non-& paraverbal communication significantly highlighted a central meaning-making process of the participants as being in an on-going continued search of who they were, are and can be.  This was evidenced by the need to articulate the illness experience to a familiar health care professional who was not there to intervene but rather to listen.  Humour in particular was seen at these times when the participants either failed to find words, or used colloquial terms such as “crazy”, “breakdown” and “insane”, punctuated by “I don’t know” and rueful chuckles; when relating important events or obstacles.  Laughs were interspersed in the sections of the interviews where participants described their decompensation and hospitalization in detail, and when there was the realization that their delusions were not real.  Each participant spontaneously elaborated on their acute psychotic episode, even though this was not directly questioned or explored in the interview.

“well, one of the paranoid delusions I had was I was afraid, which is very common, that somebody was going to hurt me, somebody was out there to hurt me, and after reading that that’s one of the most common delusions I was like ‘ok, that’s cool’ {Laugh}” (Cory)

The search for self-definition was inseparable from the process of adaptation to the many phases of the returning to school experience.  This process of adaptation was not described as seamless or linear. The adaptation to self-as-unwell seemed to be temporally spread across the following transitional experiences of self-development and meaning-making:

(1)    Recovery in the post-acute phase: Taking the time to understand what had happened, what it meant and to begin to integrate this into the self-concept.  Alex never took the time to do so and after several repeated failures at school and three relapses, he changed his long term occupational goals. 

“Well, I kinda felt like I was not able to do it, like I didn’t have I guess first of all I wasn’t able to go through with school after what happened, I don’t know, I don’t know, … I kinda felt like…I kinda felt like I couldn’t do it”  (Bill, in a quizzical, lowered tone of voice).

“It’s just like at the beginning, my family thought I was strange… {Laugh} the first few weeks there, they seemed scared of me, it was funny.  Well, it wasn’t funny but anyways, it was weird” (Evan)

(2)    Current difficulties at school: Self-depreciative humour was also used when discussing their difficulties.  All participants had expressed the expectation that both activities and hence their self, would eventually return to ‘normal’. When faced with continued obstacles such as medication side effects, cognitive difficulties or residual symptoms, participants had to continue to negotiate or integrate the notion of ‘self as unwell’.  In addition, this seemed to be linked to their acceptance of lowered standards of academic or social performance in relation to the self-evaluation of capacity when confronted with ongoing impairments. 

“Even now, at times like I stare at people and my friends make fun of me, that’s funny {Laugh}, because I really stare at people a lot … I don’t know, maybe it’s part of the illness” (Evan)

“Do you feel that you are getting the results you want at school for the effort that you put in?”
“No! {Laugh}” (Debbie)

“…it’s a very big thing, is to keep in touch with reality, for sure.
Yes
{Laughter}” (Cory)

The centrality of the negative impact of the psychotic experience on the sense of self continued to significantly impact these five young adults in a difficult to verbalize dialectic between self-as-ill and self-as-student.  What they were able to directly verbalize was also related to self-transformation; however, the meta-level themes emerging from the iterative coding of statements were more positive. They revolved around describing the ability to develop and sustain remission, recovery and a positive sense of self in the face of challenges.

The following analysis of the content of the participants’ stories is illustrative of the experience of Returning to school, and Staying in school, as these were reflected on and narrated as separate processes by each participant (themes presented in bold type).

Returning to School
Returning to school after a first episode of psychosis includes negotiation of the school and medical system to obtain all the necessary paperwork to explain absences, behaviours and course failures, as well as choosing and registering for courses. It also includes the first month of starting classes. This was especially so, as with the exception of Debbie, the participants all had at least one attempt to return to school that failed during the first month of classes. 
Readiness was a term spontaneously used by all the participants to describe their successes and failures in returning to school, and is conceptualized here as the over-arching process in recovery to be able to return to school. Readiness was distinguished by the participants from the desire to return to school in that there was a sense of actually believing in their ability to try and succeed. Bill says: “It took me maybe… a whole year to recover completely”; and Evan shrugged: “I guess first of all I wasn’t ready to go through with school after what had happened”.  Even though narratives were highly individualized, there were commonalities in the process of fostering or hindering readiness.

The main challenges to readiness and returning to school were two-fold. Side effects of medications were unanimously the first on the list.  “Sometimes the medication would be, I would be too drowsy…and they would have to decrease it…I would always feel tired” (Alex). Waking up early in the morning for classes as well as maintaining focus during a class was found to be difficult in the first few weeks of school. This simply compounded the fear of failure: “it was like ‘oh shit’, I don’t wanna get 30%’s again” (Evan). The four men described initial failed attempts to return to school due to an over investment in studying. “Instead of like studying normally, I was studying all the time” (Bill). A devastating parallel emotion noted in the chart reviews is the effect of shame at having failed the school experience during the prodromal phase. This was clearly articulated by Bill, stating that he “felt like I had disappointed my friends”, and the “fear that someone might find out that … I was ill, I thought they would react”. Evan chose a different community college when returning to school to avoid those who had observed his decompensation.

In spite of profound fears, and the practical issue of medications, all five participants kept trying to return to school even after initial failures for four of them.  The desire to return to school was symbolic of normalcy, and included the developmentally appropriate milestone of re-establishing peer networks, “it was the desire to like rekindling those friendships” (Bill).  The desire to be productive was articulated in terms of education as a necessary asset for future employment and identity goals “I wanted to be an Engineer; I wanted to have a future” (Bill). 

Family, friends and community fostered belief in personal capacity.  Positive familial expectations were primary “my mom, my mom always told me ‘go back to school, go back to school’” (Alex), while others relied more heavily on their church communities, “God. That’s first.  He gives me the confidence…to do it” (Debbie). Family support provided a safe environment where the pragmatics of home management were taken care of; “they’d just kinda like be more sensitive, like my needs and stuff because I’d been sick and just being there for me more” (Cory). For the participants who were able to maintain their friendships during their illness process, these friends significantly encouraged them, saying things such as: “you’re smart, you can do it, you know, just take it one day at a time” (Evan).  Having a social support network facilitated the engagement in daily activities.  Communities and friends helped to provide increased opportunities to be more active in preparation for returning to school through leisure activities and sports, “we saw each other often so instead of being alone all the time and doing nothing” (Evan). 

In addition to personal and social resources, the services provided by the early intervention team were described by all the participants as helpful. Specifically, learning about psychosis helped with adherence to medication which all admitted was necessary in spite of side effects. Understanding the illness also helped with the reconstruction of meaning. “All the doctors say something different, like it was an adolescent crisis and stuff, but I just think ‘Woah shit! What is this crap?’  It’s like, maybe it’s like I fell insane […] you hunt a little bit everywhere [for the answers].” (Evan).  Knowing more about mental illness within a stress-vulnerability model helped normalize the situation, as Debbie states “[the psychologist] said often that she knew lots of people […who…] had a hard time”. Having a concrete reason for the unexplained difficulties provided relief in some instances: “I think if I knew I had this before, I would have dealt with it much better I think” (Debbie).

Other rehabilitation-oriented interventions were described as being helpful (day hospital, occupational therapy, psychiatric follow up). Cory explained that “Doing [day hospital] from 9 to 4, 9 to 2 everyday, it was really nice…helped me get back into the swing of things”. The clinical support mentioned had commonalities with the aforementioned themes. They provided structured engagement with activities, peer support, and the opportunity to understand and work through what had happened. It was necessary for the five participants to have therapeutic support, beyond psychoeducation, to be able to reconstruct a meaningful narrative.  Bill was grateful for“[relationship with a resident] was helpful getting over the fact that for like two years I believed that I was [telepathic] but it was not real”. 

Debbie “just started talking to people aaaand…I felt better”…“having a place where you can tell people what’s going on…just telling them, …the one thing you should never do is isolate yourself”.  Having someone bear witness to their experience seemed crucial in the healing process, as all five had participated in various group therapies. The social support received from peers helped with the normalization of the psychotic experience, as “listening to other people’s stories is really awesome to help you out” (Cory).

Beyond all of these, the passage of time was important for all of them. Bill explains: “after the time off, I kinda felt like I was ready, that I could do it […] it was really the time off, like I had time to realize, I had time to like get back into the mind set I needed to be in”. This time was necessary to work through feelings of shock, sadness and trauma occasioned by the psychosis and hospitalization.  Evan reveals that “at the beginning I felt so lazy, like I absolutely didn’t want to do anything […] I don’t know, it was like I was so empty”. Debbie, Alex and Evan were officially diagnosed with depressive traits and along with Bill, were taking anti-depressants or mood stabilizers. Time helped to move past this sadness and towards hope, self-confidence and readiness to return to school.

Overall, in spite of initial failed attempts when not sufficiently ready, and the continued presence of symptoms, returning to school was achieved by these five young adults within two years of their first psychotic experience.   Returning to school successfully was described as hinging upon the process of ‘feeling ready’ on the ongoing continuum described in the structural analyses, of a shifting sense of selfhood.

Staying in School
Staying in school in an enduring, productive academic role was experienced as more complicated than returning to school.  All five participants were surprised to discover that after the initial rush of starting classes had waned, the need to continue to engage in, and manage academic life did not happen easily.

The most common obstacle was cognitive difficulties, most frequently described as difficulty “concentrating”. For some it was related to fatigue and mental endurance secondary to the sedating side effects of the medications, “I would be too drowsy […] it was just hard, just focusing”. Sedation was also a hindrance to effective time management and general efficacy, “not being able to go to school on time, even if it was 11, my classes started, I was just tired”. A second source of cognitive difficulties was residual symptoms such as depressive features or anxiety states, “I had to walk into a class of 30-40 students, sit down, stay focused, make sure my thoughts don’t run”. For Alex and Evan the cognitive challenges pre-dated the psychotic episode, “I always had a hard time learning” (Alex).

Social anxiety linked to self-stigma was something poignantly described by every interviewee. In Evan’s words, he“ was a full reject”. Social anxiety was expressed in relation to a fear of criticism or denigration. “Only my parents know about it […] no one at school knows about it, none of my friends know about it so…[…] it would be kinda embarrassing because it’s kinda like a stigma to be…the way people think of people with mental illness is that…it’s not exactly a positive thing.” Included in this self-stigma was the negative body image linked to weight gain, a medication side effect. While the general social anxiety of returning to school faded within the first few weeks through “practice” (Cory), the insidious effect of self-stigma was still evident, as described in the structural analyses.

Experiences and meaning which countered the fear of failure and self-stigma were significantly present.  All the participants expressed their enjoyment and satisfaction in developing mastery in achieving a personal goal, and this continued to fuel their efforts and hopes even when facing obstacles.  “School is like a long term thing, it’s a personal thing, it’s not something you do because you have to or because somebody wants you to do it.  It’s something that you do, that you take your time to do, and it just makes you feel better as a person, it just educate yourself and bring yourself to a higher level, you know?  That’s what keeps me going, you know?” (Cory). 

Integrating socially at school helped normalize the difficulties they were experiencing.  “When I hear the kids- students- talking about ‘well, I think I got a D or C’ I was like ‘I’m not alone!’” (Debbie).  It also provided opportunities for dating “because you’re always meeting new people” (Cory). The three who were in school for over six months participated in school based clubs which they said brought “balance” into their lives.

Balancing and maintaining a healthy lifestyle was also described as imperative. Adhering to medications was mentioned by all as crucial, as well as consciously taking time off, “taking a day to myself, you know.  I just stay home, watch TV, sleep for like 14 hours and just turn off my phone” (Cory).  Time off was also part of the every day schedule, “you can just rest for 15 minutes, you refresh yourself again” (Debbie).  Abstaining from drugs and alcohol was acknowledged as necessary and was facilitated by having developed alternate social networks at school.

The four participants, who successfully maintained their academic role, described coping strategies to compensate or remediate the obstacles presented by cognitive deficits and social anxiety. These varied between behavioral strategies such as a part-time course load, or avoiding early morning classes, and the more complex issues of organization and time management skills. “Because what happens is that when you arrive at school…you hurry and you hurry and then you have an exam after so it’s really like managing your time” (Evan). Maintaining a mindful approach and as Debbie said, “just focusing on the present” was found to be helpful.

Participants had to find ways of addressing their cognitive deficits, stating “I just can’t stay focused sometimes but I learnt to pick out the key points” (Bill). Debbie sought help from the OSD services to “help me write a schedule […] helps with when I write papers, I go to her, and she checks to see, like, the organizing, the pieces, the introduction, everything, make sure it’s OK”.   

Bill and Cory found an occupational therapy group on cognitive skills useful to increase their awareness of attention difficulties and problem-solving methods. Although only Debbie used school-based services, the chart reviews revealed that all five had received individual and group interventions in occupational therapy. This included psychoeducation centered on understanding their illness from a functional perspective, problem-solving study skills and habits based on their individual impairments and strengths, and contextualized illness management strategies. 

The on-going challenge associated with learning how to manage vulnerabilities and academic performance was strongly linked to the maintenance of hope.  “I don’t know…the future…it leaves…I have lots of hope now”(Bill). The further along in the successful maintenance of the academic role, the more important hope became. Participants realized that the process may never become easier and the level of effort and compensation required would be high.  “It’s just the fact, like, that I just want to be normal” (Evan). 

After successful completion of a program in spite of illness, at transitional moments between college and university (Cory) or undergraduate and graduate degrees (Bill), doubts would re-emerge regarding personal capability to achieve new goals. Cory wanted a university degree but wondered: “maybe a trade school for landscaping that I might try, but I’m not sure yet, I’m still deciding”. Bill had a 2.75 GPA at the time of the interview, and said: “ I want to do a ummm Masters, but that would be about a 3.0 to get to a masters, so…”.  Debbie’s concluding comments made it clear: “you feel that there’s still more to be done… keeping hope is the hardest thing sometimes”.

The most striking, over-arching theme which cuts through the thematic and structural analyses and across each participant’s experience is developmental. Maturity was described as necessary to maintain a healthy lifestyle and to accept and overcome illness-related difficulties. It linked to statements involving the importance of growing up, of becoming ready, of learning who they were, and of keeping hope. This included accepting a lowered standard of performance for overall grades, being enrolled part-time,  managing the social repercussions of psychotogenic behaviours, and, for Alex, having to let go of an academic goal altogether, “I don’t think being in school is where I’m meant to be, is the way I look at it, just wasn’t meant to be” .

“I had absolutely no idea about what I wanted to do, now I know myself better and…I don’t know […] before, I don’t know, I was just, it’s as if I wasn’t, I wasn’t so serious.  It’s like I f**ked around all the time and stuff.  Now I’m more serious”(Evan).  For these participants the consequences of not being self-responsible included psychosis and hospitalization.  “Just ah, matured a lot, it’s just changed my life, you know.  Different perspective of life” (Debbie). 

For these participants, the mature acceptance of illness was intricately linked to identity development in the context of the onset of mental illness at a young age. It is a complex, transactional process in which each participant’s individual resilience seemed to be fostered by their social support, culture and clinical approaches. It is worth mentioning that all five found that their personal growth and maturity was significantly facilitated by their therapeutic psychoeducation experience in occupational therapy, within a treatment approach which focused on function, personal values and adaptation rather than symptoms. In addition, four of the five participants had attended occupational therapy groups whose focus was adaptation to illness using projective techniques. These groups were described as facilitating the process of developing readiness to return to school, self-acceptance, and the maintenance of hope, through peer support and self-exploration.

Discussion
Outcome research in early psychosis reveals that resuming a student role after a first episode of psychosis is not typical (Harris, et al, 2008). However, this exploratory study portrays that four out of five participants who had experienced a first episode of psychosis could and did reintegrate successfully into post-secondary school. In this sample, the variability in diagnoses, premorbid risk factors and drug use, cognitive complaints, duration of untreated psychosis and time to recovery, all fit within the population descriptions provided in the literature (McGorry, Yung & Phillips, 2003; Neria et al, 2002).
Returning to school involves recovery from the psychotic episode, and developing the readiness and desire to return to school and resume normalcy.  Staying in school requires engagement in illness management skills, compensating for potential cognitive deficits, and continued support for a mature adaptation to illness.  This study indicates that the central thread in designing rehabilitation services may be to understand the transactional effects between identity development, readiness, recovery and the dynamic adaptation to on-going challenges. The discussion will relate these concepts to the participants’ experiences, and link them to rehabilitation interventions.

The process of recovery is what leads to the development of self-confidence to invest the self’s energy in desired goals (Deegan, 1988; Anthony, 1994). What is notable in this study is the length of time needed for the participants to do this. A similar conclusion was reached in a study exploring barriers to employment in early psychosis (J.Bassett, C.Lloyd & H.Bassett, 2001). The narratives herein indicate that rehabilitation and reintegration may need to proceed slowly, allowing time for recovery and readiness to develop through individual and group interventions. For the participants in this study, services were offered beyond the two year lengths of stay characteristic of most early intervention programs (Harvey, Lepage & Malla, 2007). 

All five began to experience functional difficulties in grades 11-13, in the transition from high school to post-secondary schooling. The recovery from a first experience of psychosis included understanding and reframing the difficult school experience as psychosis began to emerge. The structural analyses added a deeper layer of emotional meaning to the relationship between the fear of failure and readiness. It was notable how all of the participants spontaneously provided details of the process of their fragmentation, and attempted to justify or understand the reasons behind it.   These portions of the narratives did not seem to be readily coherent, but rather were constructed during the session for a researcher who was also known to be a clinician. These narratives have been interpreted as an on-going need to create meaning out of an experience that continues to impact their sense of self (Tedeschi, 2005). In effect, there seems to be a dynamic need to re-negotiate the self-concept vis--vis the discrepancy between desires, expectations of remission, and actual performance.  The interview session seemed to serve a partially therapeutic purpose as only two of the participants had ever disclosed their experience to anyone outside their immediate family or treating team. 

With respect to understanding their psychotic episode, psychoeducation was useful in that the information shared about the illness went beyond facts. The participants were provided with a narrative space within the clinical services where these ‘facts’ could be incorporated into their self-concept (McGorry, 1995; Sumsion, 2005). This debriefing of the prepsychotic experience seemed to be important to minimize the shame and fear of failure when returning to school. Addressing secondary depression and anxiety in the post-acute phase was also part of this recovery (Gleeson, Larsen & McGorry, 2003). It seemed though, that this was not a one time, or phase-specific process, but rather a recurrent need to dialogue about, and integrate the illness experience as part of one’s self. The provision of, and engagement in, therapeutic relationships in which these young adults could continually articulate and reconstruct what was happening to them was a significant component of the psychosocial rehabilitation services.

These comments are supported by the themes of self-stigma and maturity.  Learning about psychosis is necessary to provide meaning to the experience and foster readiness; however, with time, accepting the label of mental illness and the lived experience of functional consequences led to self-stigma.  Terms such as ‘insane’, ‘crazy’ and ‘breakdown’ all had deep ramifications on their sense of self.  It is significant that four of the five participants had at least one failed attempt to return to school.  This confrontation with longitudinal difficulties that are unanticipated or vary with time, demands an on-going adaptation to an illness identity by the young adult.  Support in accepting different standards of performance, due to new cognitive or emotional stress thresholds, could be facilitated by the family network, peers or professional staff. This is especially important when looking at the academic rehabilitation process through a developmental framework.  Adolescents and young adults develop significant peer social networks that foster their identity development and provide daily support in life (Harrop & Trower, 2003).  Young persons who have experienced psychosis can, and do, develop these networks but are unlikely to disclose their diagnoses or difficulties to their friends due to the fear of stigma.  The term ‘psychosis’ is a frightening word; one which is not easily shared. However, the need for these young adults to articulate and share with peers remains.   This is where therapeutic efforts enabled success, as described in this study.

For these five participants, day programs were safe environments in which to fine tune medication levels and learn about psychosis, to access peer support and provide a daily structure to help re-habituate to an active lifestyle. The only participant who did not fail in their first attempt to return to school had attended a day program for 5 months prior to returning to school  while the others had either attended day programs for shorter periods (ranging between 2  to 10 weeks) or a once a week, afternoon youth group for 6 months.  To echo the conclusions of Lloyd, Bassett & Samra (2000), it is hoped that outcome-oriented research will emerge to support the efficacy of day programs in rehabilitation for persons diagnosed with a first episode of psychosis.

In terms of social support, Debbie was the only one who, although financially supported by her family, was living alone.  The chart review validated her stated difficulties in organizing her time for school and also in preparing her meals.  This also contributed to her fatigue and limited how much she could take on at school. Research supports the inclusion of family in the design of services as they provide a “comprehensive range of practical, emotional and financial support” to the young family member with psychosis (Sin, Moone & Wellman, 2005, p.589). Friends were also identified, by the participants, as fostering the process of readiness through emotional support and by providing normalized opportunities to engage in activities in a structured manner.  In terms of social relationships, research with this population highlights the losses in social networks that occur. This can be compensated for in part by other young people who have also experienced psychosis (MacDonald, Sauer, Howie & Albiston, 2005). Again, this adds support for the therapeutic aspects of day programs or group interventions for this population. 

The achievement of social integration within the school setting facilitated the return to school process for Bill, Cory, Debbie and Evan. Beyond the concrete stress management and leisure opportunities that this affords, developing competency in domains valued by self or society helps to maximize resilience in the face of increased pathological risk (Masten, Best & Garmezy, 1990).   This competency helps balance out against injuries to the self-concept when not performing at desired academic standards. 

Overall, the results of this study point towards some similar SEP needs in a population with early psychosis.  These needs include psychoeducation and the development of illness management and study skills (Collins, et al, 1998). Although it was clear in the charts that all the participants were aware of their difficulties and had been informed of available school resources, only Debbie actually accessed the services offered by the OSD. She was able to identify and accept her need for help and accommodations.  The others did not, either because they felt they didn’t need it or in part due to the fear of stigma. As previously stated, SEP’s in the United States focus on supporting persons with a diagnosis of schizophrenia towards adopting a more active, non-dependent role within normalized school environments. However, the central thread running through the resulting themes for persons with early psychosis is the opposite, that is,  having to adapt to a self-concept which  includes illness and new limitations. 

Chart reviews of the four participants who did not use the OSD revealed prior experience in occupational therapy with interventions aimed at problem-solving study skills, lifestyle choices and contextualized illness management strategies. Examples included psychoeducation about the negative effects of drugs, designing a weekly schedule, choosing a course load and classes whose evaluation methods fit with the individual’s strengths, as well as cognitive strategies to minimize anxiety or compensate for new impairments. It seemed that these young persons were willing to receive support in these areas, but only when segregating their ‘normal’ school environments from their ‘medical’ support system.  The perception may be that mental health professionals are already aware of what the person is going through, while school staff are not.  This, for the participant, may be linked to the fear of stigma and, thus, their avoidance of disclosure within the school environment.  This makes the provision of school-related support within the clinical milieu a useful approach.  Examples of such support include groups to problem solve study strategies and habits, projective activities in occupational therapy to help with the articulation of difficult emotions (McGlashan, Wadeson, Carpenter, & Levy, 1977; Thompson & Blair, 1998),  and vocational counselling at transitional moments to aid in goal setting and decision-making (Goulet, Rousseau, Fortier, & Mottard, 2008). Therapeutic counselling to facilitate the acceptability of linking to OSD’s could be a goal, in order to eventually normalize the environments in which young adults function after a first episode of psychosis.

Limitations of this pilot study include the small sample size, which did not allow for theoretical saturation.  All five participants were well connected to their families and engaged in treatment, which makes it difficult to know from this pilot study which themes would remain salient in a more complex situation such as a young person with forensic issues, or no family support.  As well, since the interview was a one-time event, there was less opportunity for the researcher to explore pertinent information about personal experience that may not have been as forthcoming during the first session.  The recruitment difficulties were a significant limitation to the process of the study, resulting in a sampling bias whereby all the participants had received occupational therapy services. However, this seems to have been beneficial in terms of preliminary trust between the participants and the researcher as well as pointing towards pertinent rehabilitation approaches.

This study highlights areas for future research. In addition to research exploring academic reintegration with a larger sample to achieve theoretical saturation, two promising avenues for rehabilitation research include (1) exploring the development and practice of hope (e.g. Mattingly, 2010), with youth having experienced early psychosis and (2) promoting and evaluating the use of developmental theories in the design of rehabilitation services (e.g. Vogel-Scibilia, McNulty, Baxter, Miller, Dine & Frese III, 2009).

Conclusion
The process of identity development is useful in conceptualizing the experience of academic reintegration of young adults after a first episode of psychosis.  The importance of ‘being ready and mature’ was clearly articulated when faced with on-going challenges and the discipline required in managing academic performance on a daily, long-term basis.  Occupational therapy interventions to promote readiness, and to problem-solve on-going obstacles do exist, and include age-appropriate social integration as a goal.  It may be necessary to engage these young persons in long term therapeutic relationships that vary between arm’s length monitoring to more frequent and tailored rehabilitation during critical transitional moments or at times of self-doubt.  These therapeutic relationships can provide these clients with the opportunity to find strategies for success, to continually recreate the narrative of their lived experiences, and to maintain hope.
   
 

 

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