80
Psychology and Psychotherapy: Theory, Research and Practice (2014), 87, 80–95 © 2012 The British Psychological Society www.wileyonlinelibrary.com
Distress, trauma, and recovery: Adjustment to first episode psychosis Ranil Tan1∗ , Rachel V. Gould2 , Helen Combes3,4 and Sarah Lehmann2 1
Rotherham Doncaster and South Humber NHS Foundation Trust, UK North Staffordshire Combined Healthcare NHS Trust, UK 3 Keele University, Newcastle-under-Lyme, UK 4 Staffordshire University, Stafford, UK 2
Objective. To understand the experiences that people with early psychosis are adjusting to and their perceived barriers to recovery. Method. Semi-structured interviews were conducted with eight participants. Grounded Theory was applied to the design and analysis. Sampling and coding ceased when saturation of the data was reached. Respondent validation was sought from participants. Results. A theoretical model was developed using Strauss and Corbin’s (1998) framework. A core category of distress was elicited, which was evident in all participants’ accounts of their recovery. Overall six main categories were identified and it was proposed that individuals were adjusting to the distress of past experiences, uncertainty, a challenged identity, being in a psychiatric system, the reaction of others and social disadvantage. Conclusions. Recovery from the distress and trauma of early psychosis does not simply involve adjustment to and recovery from a single experience or set of symptoms. The results are discussed in relation to trauma, developmental, and social inequality frameworks. Specific implications for clinical practice include incorporating the findings within formulations, developing interventions that focus on trauma, identity, and uncertainty as well as addressing the social and systemic issues identified.
Practitioner Points • Recovery from early psychosis is multi-faceted. Psychological formulations should seek to consider individual, social, and systemic factors influencing an individual’s distress to more fully conceptualize what an individual’s adjustment to early psychosis may involve. • Services and wider systems should consider iatrogenic processes, which may contribute to and maintain the distress experienced by those with early psychosis. • Education programmes that look to contextualize psychosis within a meaningful framework may help to develop understanding within wider society where a lack
∗ Correspondence should be addressed to Dr. Ranil Tan, Rotherham Doncaster and South Humber NHS Foundation Trust, Manchester Early Intervention Service, PO Box 42, Manchester M40 4AE, UK (e-mail: [email protected]).
DOI:10.1111/j.2044-8341.2012.02073.x
Adjustment to first episode psychosis
81
of knowledge and understanding serves to reinforce an individual’s sense of exclusion and difference. Psychosis refers to a group of conditions (such as schizophrenia) most likely to commence in young adults. Psychosis is characterized by changes to the way an individual thinks, feels, and understands their world (British Psychological Society, 2000). The World Health Organisation’s (WHO) report on the burden of mental illness suggests that psychosis is among the top 10 leading causes of disability or health burden (WHO, 2001). Recovery from psychosis has been the focus of much research and discussion (e.g., Andresen, Oades, & Caputi, 2003; Anthony, 1993; Deegan, 1990; Kelly & Gamble, 2005). Given the impact of psychosis, it is important to develop an understanding of the experiences people are recovering from (Anthony, 1993; Deegan, 1990; Kelly & Gamble, 2005). Repper and Perkins (2003, p. 48) suggest that people with mental health problems are recovering from ‘the multifaceted catastrophe of that experience’. This includes the trauma of past experiences, current symptoms, stigma, negative social attitudes, disempowerment, discrimination, and social exclusion. Anthony (1993) suggests that recovery from the consequences of mental distress (such as stigma, exclusion, loss of rights) can sometimes be more difficult than recovery from the distress and confusion itself. In a review of first episode psychosis (FEP) qualitative studies, Boydell, Stasiulis, Volpe, and Gladstone (2010) suggest it is paramount to understand the experience of FEP within young people’s own framework of meaning. The studies reviewed suggest the emerging themes in recovery include a number of generic social processes. These include asserting a sense of self over the subjective experiences of psychosis (achieving identity); gaining insight into the experience (acquiring perspectives); being in employment and making meaningful use of time (doing activity); and making sense of what has happened to allow people to gain more control and help re-define themselves in light of their past experiences (Spaniol, Wewiorski, Gagne, & Anthony, 2002). Adjustment to FEP When considering the process of recovery, few studies have looked at the full extent of experiences that young people with FEP are adjusting to and the potential barriers that may hinder the recovery process (Bergner et al., 2008; Corcoran et al., 2007; Noiseaux et al., 2010; Romano, McCay, Goering, Boydell, & Zipursky, 2010). Many studies of FEP refer to the confusion and lack of understanding that people with psychosis have in relation to their past and unusual experiences (Thornhill, Clare, & May, 2004). Young people report a number of psychological sequelae associated with having psychosis; these include shame (Birchwood et al., 2007), stigma (Birchwood et al., 2007; Tarrier, 2002), depression and post-psychotic depression (Birchwood, 2003; Birchwood, Iqbal, & Upthegrove, 2005), anxiety (Gumley & Schwannauer, 2006), and low self-esteem (Roe, 2005). There is evidence suggesting that psychosis may occur as a result of traumatic events (Bebbington, 2009; Morrison, Frame, & Larkin, 2003), particularly in relation to trauma experienced as a child (Hammersley, Read, Woodall, & Dillon, 2007). Furthermore the experience of psychosis has, in itself, been reported as traumatizing (Bendall, McGorry, & Krstev, 2006), both in relation to symptoms experienced and subsequent treatment within the psychiatric system. Romano et al. (2010) suggest an individual’s sense of self is re-shaped rather than reconstructed following FEP. Adjustment to the experience of psychosis may include
82
Ranil Tan et al.
taking account of personal identity before psychosis, encountering the illness and the disruption this brings, engaging in treatment and support, re-engaging in life and envisioning the future. Other reviews have also suggested similar staged models of recovery from psychosis involving moratorium, awareness, preparation, rebuilding, and growth (e.g., Andresen et al., 2003). In addition to managing traumatic life events and psychological adjustment to FEP, young people experiencing mental health problems may feel stigmatized, labelled, and experience multiple losses of identity, family, career choices, and social standing (Leavey, 2005). These experiences can inhibit adjustment to FEP and may be distressing and potentially traumatic. Psychosis often places people in disempowering positions in relation to friends, family, and society (Pitt & Kilbride, 2006). Recovery may involve empowering individuals by means of a collaborative approach with professionals and support from family and friends, that seeks to build confidence, independence, and allows individuals to gain control over their lives (Perry, Taylor, & Shaw, 2007; Spaniol et al., 2002). Guidance on recovering from FEP emphasizes recognition of individual differences and a holistic and integrative approach to treatment. This involves tackling discrimination, public understanding, and media portrayal of mental health difficulties (British Psychological Society, 2000; NIMHE, 2005). Important markers of recovery include achieving ‘ordinary lives’ such as having a home, job, family life, and friends (WHO & IEPA, 2004). Having an understanding of the distressing and potentially traumatic experiences that people with FEP are adjusting to and their reported barriers to recovery may help to focus recovery services more towards the needs of service users.
Rationale The qualitative literature has mainly focussed upon the process of recovery from FEP. Less attention has been paid to the nature of experiences that cause distress, how this distress is experienced and how it may form a barrier to recovery. Giving professionals a better understanding of what adjustment to FEP may involve and insight into potential interventions requires developing more systematic knowledge about what subjective experiences young people with FEP believe they are recovering from. Turner-Crowson and Wallcraft (2002) argue that the concept of recovery within mental health services has been appropriated by professionals and may not truly represent the language and experiences of service users. The present study used a qualitative approach to explore how young people discuss and make sense of their recovery in order to develop a model that conceptualizes this process. One particular aspect was examined: what do people say they are recovering from?
Method Design A semi-structured interview was used to guide exploration of the subject area (Smith, 1995). The interview was transcribed by the researcher and the transcripts were analysed using Grounded Theory. The interviews were conducted in community settings chosen by the service user, with little outside disturbance. Approval for the study was gained from the Local Research Ethics Committee (LREC) and the NHS Trust’s Research and Development Consortium.
Adjustment to first episode psychosis
83
Table 1. Demographic information of participant sample
Age No. (years) Gender P1 P2 P3 P4 P5 P6 P7 P8
24 25 26 22 24 24 24 25
M M M F F M M M
Ethnicity White British White British White British White British White British White British White British White British
Length of contact with Early Past Intervention Currently history of Number of Service using illicit drug admissions Employment (years) medication use to hospital status 3 3 3 3 2 3 3 3
Yes No Yes Yes Yes Yes No Yes
Yes Yes Yes No No No Yes Yes
2 1 1 1 2 1 1 1
Unemployed Employed Unemployed Student Unemployed Employed Unemployed Employed
Materials An interview schedule was constructed by the authors. Open-ended questions were asked to allow a greater flexibility of coverage and for participants to describe their experiences as freely as possible (e.g., how do you understand the word recovery? What do you feel you are recovering from? What do you need in order to help you move forward from these experiences? What is unhelpful for you in this process?). The ‘miracle question’ (de Shazer, 1988) was included within the interview schedule as a way of eliciting thoughts about wider systemic issues in relation to recovery. As interviews progressed, new questions were introduced based on what previous participants had said in their interviews (Strauss & Corbin, 1998). To avoid bias in interpretation, responses were explored and clarified, as the emerging model was developed (e.g., Do you feel the experiences you have described relate to your recovery?). The interview schedule was initially piloted with a Trainee Clinical Psychologist and minor amendments were made. All interviews were recorded on a digital tape recorder.
Participants The researcher contacted a local Early Intervention Service in the West Midlands in order to recruit participants. The service was aimed at young people aged 14–35 with FEP. In line with the Early Psychosis Declaration (WHO & IEPA, 2004) the service offered a range of interventions and support for young people within a recovery framework. Participants were included in the study if they were aged between 18 and 35 with FEP. Participants were excluded only if they were currently experiencing an acute episode of psychosis. Overall, 20 people were approached to participate in the study, of which eight agreed to take part. Participants were aged between 22 and 26 (mean = 24.25 years, standard deviation = 1.16 years). All participants were either in their second or third year of a possible 3 years with the Early Intervention Service. Five participants reported a history of previous drug use. Psychological formulation and intervention occurred within the multi-disciplinary team. Four of the participants had worked with an Early Intervention Team Clinical Psychologist. Table 1 summarizes the characteristics of the sample.
84
Ranil Tan et al.
Procedure Participants were identified and approached by their care coordinators. Participants expressed interest by posting a reply slip to the researcher. Prior to the interview, the research process was explained to each participant and consent was gained. All participants took part in a 1-hr semi-structured interview, which was audiotaped. Following the interview, participants were debriefed and given the opportunity to receive a copy of their transcript in order to validate what had been said and to omit any of the content they felt uncomfortable with prior to analysis. Six participants requested to see their transcripts, were happy with the content and did not request any changes. Two participants did not want to see their transcripts. Data analysis The interview transcripts were analysed in accordance with the principles of Grounded Theory (Strauss & Corbin, 1998). Grounded Theory involves the progressive identification and integration of ‘categories of meaning’ from the data (Willig, 2001; p. 33). Each interview was transcribed and coded before the next interview took place, to enable theories generated from each interview to be tested out and validated with participants in subsequent interviews. Transcripts were open coded, using a line-by-line analysis. As far as possible codes were in vivo, thus aiming to capture the essential quality of what was represented within the text. As the interviews progressed, themes developed; codes were assigned to categories and axial coding was used to explore the relationships between categories. Axial coding is the disaggregation of codes and their reassembly into conceptually meaningful structures. This was used in the second stage of the analysis, where the data was ‘put back together’ in order to form categories. The process involved relating categories to their subcategories. The final stage involved selective coding to establish the core category. This was determined by looking for commonalities through re-reading all transcripts and reviewing notes, codes and categories. Analytic and reflective memos, ongoing questioning, hypothesis formulation, and discussion with supervisors aided the development of the emergent model.
Credibility of analysis A number of steps were taken to minimize researcher bias. Participants were given the opportunity to receive a copy of their transcripts, to validate the content of the interviews. All codes and themes were given to a second coder who checked each code and theme with anonymized transcripts. There were discrepancies in 15 of the 656 codes (2.29%) and a consensus was reached through discussion between the researcher and the second coder. All themes were agreed. At each stage of the data collection and analytic process, the researcher met with the research supervisors to discuss experiences, reflections, and emerging themes. Theoretical sampling was used to develop theoretically relevant constructs. Each interview was used to provide concordance or dissonance with a previously determined theoretical construct, thus allowing the theory to develop. This gave the opportunity for the researcher to clarify themes and check whether they related to the research question. Negative case analysis was conducted so that negative instances (i.e., where responses did not fit the model) were analysed and explored within subsequent interviews so the final model incorporated variation but was representative of the majority of responses.
Adjustment to first episode psychosis
85
Figure 1. Theoretical model of adjustment to first episode psychosis.
Saturation of the data was achieved when no new categories were produced and the model could account for all the data obtained (Strauss & Corbin, 1998). This occurred after the sixth interview. Two further interviews were carried out to confirm that all categories had reached saturation.
Respondent validation A summary of themes was sent to all participants after the final interview. Two participants returned their questionnaires validating both the categories and overall model.
Results An emergent theoretical model was developed. The core category, main categories, and subcategories are illustrated in Figure 1. Bi-directional arrows indicate the dynamic relationship between categories. The six main categories are defined by their subcategories and each of these contains representative examples of quotes made by participants (these are shown as indented quotes with a [P] denoting the participant number). The core category refers to appraisals that the FEP experience, as a whole, was described as distressing and traumatic. The six main categories refer to more specific themes. The first category focussed on the distress of life experiences and reflected issues relating to past events and the impact of drug use. The next main category referred to psychological distress; not knowing/understanding, and a challenged identity. The final category coalesced around the themes of distress due to systems. This was defined as being in a psychiatric service, the reaction of others, and social disadvantage.
86
Ranil Tan et al.
Distress The most dominant theme (core category) was distress. This included the distress of life experiences, psychological distress, and distress due to systems. ‘I mean in a way, you can see it as a period of distress. You know completely out of balance, something isn’t right’ [P6].
The culmination of all these experiences contributed to the overall distress that participants were recovering from, P5 described this as the scars of psychosis. ‘ . . . it’s going to take me years and years to recover fully, because of the scars, bruises come and go, but the scars that it leaves you in your head is the illness and I’m stuck with it for life now’ [P5].
Core category: The distress of life experiences Participants described the distress of life experiences consisting of past traumatic experiences, which included distressing and stressful life events as well as the social impact of drug use. Main category: The effect of past experiences Distressing/stressful life events. All participants described an initial set of distressing/stressful or traumatic experiences that occurred in their lives before the onset of psychosis. Sometimes participants referred to this as a trigger. ‘I mean basically a lot of stress I mean you know I was trying to run a studio, I’d lost a lot of money on it . . . you know there was conflict with people that I was running the studio with, there was you know it’s just a big sort of stress out really. You know, I mean that’s what I blame it on’ [P7].
The majority of participants (seven) described multiple traumatic events or a prolonged nature to their distress rather than a single experience. ‘I was ill because I was in a violent relationship. And . . . my ex boyfriend, he was very violent, like every other day and I was with him for 7 years’ [P5].
These initial experiences varied across participants, ranging from abuse, adjusting to transition, through to loss and bereavement. Participants reflected on needing to move away from these situations and learn from them as part of the adjustment process. These events contributed to the psychological distress experienced by participants (e.g., feeling suicidal and depressed). Social impact of drug use. Five participants (P1, P2, P3, P7, and P8) described using drugs (particularly cannabis); drugs were used habitually over a few years. However, it was not the drug use that participants described themselves as recovering from but the social impact of using drugs, which included feeling isolated (e.g., by their peer group) and finding themselves in distressing and dangerous environments. ‘I was attacked a couple of times, some of my mates used to gang fight, this that and the other and . . . it was getting quite silly when I turned about 16–17, because they were talking about getting CS gas and things like that. And bombing peoples cars and baseball bats and this, that and the other and stuff. I just thought to myself, around that time I thought to myself I’ve got to get out of that situation’ [P1].
Adjustment to first episode psychosis
87
For some, drugs were described as offering an escape from distressing life events. However, some participants saw it as purely recreational. Overall though, participants reported feeling it was the culmination of social and emotional distress and using drugs that triggered psychotic experiences: ‘I think it’s like you’re building up to this sort of threshold and it could have been at any time. But just having the drugs I think that just tipped me over really’ [P7].
Out of the five participants who had taken recreational drugs, four also cited other sources of stressful life events. Although some participants saw a connection between these two areas, not all participants agreed with this. ‘You mentioned earlier about the connection between the drugs and the stressful event I think . . . certainly in some people’s cases I imagine there will be, but for me it was recreational I couldn’t really argue because my . . . because I had issues with my step-mum that’s why I took drugs I don’t think that would be fair’ [P8].
Core category: Psychological distress The psychological distress experienced by individuals was characterized by an overall sense of uncertainty. Participants highlighted how their own identity had been challenged by psychosis in a way that affected a number of areas including thoughts, feelings, control, and confidence. Psychological distress was both affected by past experience (e.g., loss leading to feelings of sadness) and influenced by how past experiences were perceived (e.g., seeing oneself as weak because of their reaction to abuse).
Main category: Not knowing/understanding Unusual experiences: Reality and uncertainty. All participants described having unusual experiences (sometimes described as symptoms). These ranged from experiences of paranoia, hallucinations, delusions to hearing voices. Participants described the confusion, uncertainty, and lack of understanding as being the most distressing element of these difficulties rather than the experience itself. Another difficulty participants described was trying to determine what was and was not ‘real’. This was often frightening and contributed to an overall sense of confusion about what was happening and a lack of understanding around its meaning. Understanding how such experiences happened in the first place was inevitably difficult. This uncertainty made some feel hopeless and disconnected with their environment. It also presented a challenge to peoples’ sense of self. ‘And I didn’t want to be here, I didn’t understand what was happening to me, I didn’t understand what I was seeing. I didn’t know who the people I love around me were . . . and it was just hard and I thought . . . I just thought, “Will somebody just help me?” cos like how do I get better? I’m never going to recover from this, I’m never going to get better, I don’t even understand how I got like this. This isn’t me, where’s me gone?’ [P5].
Main category: A challenged identity Feelings of distress. Many participants reported feelings of distress and the effect of this on other parts of their self (such as, their confidence). These feelings were difficult to understand, particularly as the majority of participants had not experienced such negative
88
Ranil Tan et al.
feelings previously. Trying to make sense of this distress was seen as an important aspect of recovery. ‘ . . . well when I’m depressed, basically I’m just in the house. You can’t get me off the sofa really. You’ve just got . . . don’t really know what to do with myself. Don’t really understand you know, why I’m feeling suicidal. Because that was very upsetting. Cos it’s not me to feel like that, to feel depressed and I was like ‘what the hell is this all about?’’ [P6].
Chaotic thoughts. All participants noticed a difference in their usual way of thinking. This was described as having ‘mixed-up’ thoughts. For example, one participant noticed this in hospital: ‘ . . . my mind was really active at the time, but active in a bad way, like a niggling kind of active’ [P2].
Many participants described not having a grasp of their thoughts, as they were either too chaotic or did not make sense for example, ‘ . . . your thoughts are just irrational and there’s a strange sort of logic to it really’ [P6].
Initially thought processes did not seem to make sense, but understanding emerged later. This was something all participants identified as an example of how a particular view of themselves (e.g., of having ‘logical’ thoughts) was challenged through their experience.
Loss of control. Participants described losing their sense of control as a result of their experience. ‘ . . . because psychosis takes away your control. Because it seems like . . . OK well when I was at university, I felt like I was paralysed by fear, because I just felt like I couldn’t do anything’ [P4].
In order to aid recovery, there was a need to do things that contributed to ‘restoring control’. ‘I sort of needed the management in it and that’s the control aspect. It’s like we did a sort of plan a getting well plan . . . like the obvious one for me is the sleep, making sure I’m sleeping right. And then it’s the things that contribute to that, diet, what I’m doing in the day, exercise for me is important as well, so, cos obviously you’re more tired to sleep. It’s putting those controlling factors in’ [P6].
Loss of self-confidence. Participants also reported the effect the experience had on their self-confidence. ‘I was really confident at college, slightly less so at school, it wasn’t too bad, then sort of going through uni, it was sort of mediocre and then after the breakdown it plummeted really’ [P8].
As P8 described individuals noticed becoming less confident about how they felt about themselves and what they could do over time: ‘I found myself needing justification and needing reassurance more than I used to . . . I’m looking for that, almost constantly’ [P2].
Adjustment to first episode psychosis
89
Again, there was a recognition that the way participants felt about themselves was different to how they used to feel and psychosis had in some way challenged their confidence and sense of identity. Physical effects (sleep/appetite). A number of participants described the impact of psychosis on their physical well-being. In particular, participants reported having a poorer appetite and finding it difficult to sleep. For example, one participant said: ‘In the end I got to the stage where I wasn’t eating, I just made out I was eating and I just . . . wasn’t sleeping, I just couldn’t look after myself’ [P5].
As with many participants, the lack of sleep and poor appetite were clear signs that something was not right and they needed help. It was also a more outward sign of distress, which other people (e.g., parents) were able to notice. Core category: Distress due to systems Participants reported distress related to the systems around them, perpetuated by the psychiatric service, the reactions of other people and social disadvantage. This also contributed to the feelings of uncertainty and challenged identity (psychological distress) described above. Main category: Being in a psychiatric service Shock (of being so young). For all participants, it was their first contact with psychiatric services. The experience of being in hospital particularly highlighted their status as adults within a psychiatric system. ‘I was 19, just 19 so like, and I was classed as an adult. I don’t know it was hard, I wanted my mum to stay with me on the first night really but she couldn’t’ [P4].
Similarly, P5 described how difficult it was to adjust to being in a hospital environment on your own. She described how the harsh reality of her experience became more apparent when in hospital. ‘It was shock and I was stuck and I was like, I’ve never left me mum in my life and I’m like ‘mum, mum’ pulling on her clothes ‘take me home, take me home’ she said ‘I’m sorry’ and she just grabbed me hands off her and said ‘I’m sorry [P5]’ and she went, she was crying and she walked out and left me and I’m like, I’ve got no kids, I’ve lost me kids, I’m 22, I’m in a psychiatric unit – I never expected something like that to happen. All those years when I was growing up I didn’t think I was going to end up in a psychiatric unit at 22 years old’ [P5].
Negative experience of being in hospital. Being in hospital was viewed negatively by most participants. Some reported not feeling as though they had received the right kind of support. This added to their difficulties: ‘I was seeing people at the [anonymized] Hospital at the time, I didn’t really get the support I needed from them so it made it a bit harder’ [P6].
Moreover, the experience of being in hospital (e.g., being sectioned, having to take medication, restricted freedom, loss of privacy) contributed to their distress. When asked to clarify what he didn’t like about being in hospital one participant replied:
90
Ranil Tan et al.
‘ . . . not wanting to be there for a start. You see that’s the thing I mean the experience of being in hospital was more traumatic than the episode itself’ [P7].
Main category: The reaction of others Lack of understanding. The majority of participants reported how difficult it was for other people to understand their position and difficulties. This was not surprising as many participants were struggling themselves to understand their own experience. This lack of understanding was recognized when other people ignored or tried to avoid talking about what was happening, which was deemed as unhelpful. ‘ . . . they thought I was like going through a . . . like a . . . me own thing or whatever. They just thought I was going through something, so they just thought leave him to it, he’ll be all right in a couple of years or whatever’ [P1].
The effect of not being understood had implications for the way participants felt (e.g., feeling lonely because nobody could relate to them), but it also meant other people could not provide the support they needed. There was a sense that other people would not be able to understand what participants had been through unless they had also been through a similar experience. This was not only frustrating but isolated people from those around them. The effects of being labelled (seen as different). Participants described being labelled and treated differently. This often related to the way other people perceived their experience: ‘You get labelled, that’s what they say, don’t you? When you’re mad, you’re always mad. Their Dad will always says to me “you’ve always been mad, no wonder you’re on tablets” and things like that’ [P5].
Being labelled and treated differently was apparent from both family members and wider society. For example, P2 described being laughed at by professionals when sectioned: ‘I received quite a bit of mocking I remember when I was being taken into hospital and that really . . . by the bloody ambulance people coming in and I really, thinking back did not need that at the time’ [P2].
Main category: Social disadvantage Isolation. Individuals described a sense of isolation prior to, during, and after their experience of psychosis. This related both to social isolation (i.e., having few friends and sources of support) and feeling personally isolated. Participants acknowledged that part of the adjustment process was to integrate back into their own social environment, however as P1 described this takes time. ‘You can’t just pick someone off the street and say ‘excuse me, can you be my friend?’ or whatever. It takes a lot of time, it takes, it just takes time to create something like that. So that’s what I’m doing at the moment’ [P1].
Difficulties with finances and work. A number of participants (P1, P3, P4, P5, and P7) described unemployment and having less financial security after their experience of psychosis. Finding work was reported as something most participants wanted but was
Adjustment to first episode psychosis
91
difficult to achieve. In particular they described the importance of finding somewhere they wanted to work: ‘Yeah it would make a big difference, but I don’t want to find work which is . . . like work in a factory or something like that, cos that would make me worse than make me better’ [P3].
Participants reflected upon the change in their situation and how dramatic this had been across the duration of their experience of psychosis. P7 reported the change from being in full-time employment to being unemployed: ‘I’ve gone from having a job at a warehouse to quitting that and being self employed to being on benefits. You know that was kind of really hard’ [P7].
In addition to this, participants identified changes in their social environment including the move from being financially independent to accessing benefits and in some cases having to move home to live with parents.
Discussion The aim of the present study was to understand the experiences that people with FEP are adjusting to and their perceived barriers to recovery. Young people with FEP who took part in the study, reported adjustment to a pervasive sense of distress, depicted by six clear descriptions of distressing and traumatic experiences. These were the distress of life experiences, psychological distress (not knowing/understanding and a challenged identity), and distress due to systems (being in a psychiatric service, the reactions of others, and social disadvantage). Consistent with previous research (Bebbington, 2009; Hammersley et al., 2007; Morrison et al., 2003), all participants described past experiences relating to stressful and traumatic life events (e.g., abuse, adjusting to transition, loss) and/or prolonged and heavy drug use (Cantwell et al., 1999). The environmental and social circumstances participants found themselves in as a result of drug use (e.g., being involved in crime and isolation) were also highlighted as sources of distress. Participants described many feelings and thoughts regarding drug use. Addressing these, as well as the links with the possible trauma sequelae experienced by individuals would be important aspects of focus in therapeutic intervention. Themes identified in the study align with existing ideas regarding recovery as a process requiring resolution of issues of identity, meaning and taking responsibility (Andresen et al., 2003; Noiseux et al., 2010). Psychological distress related to two aspects: not knowing/understanding and a challenged identity. Participants reported a variety of unusual experiences, which gave rise to uncertainty and a lack of understanding about these experiences and what they led to (e.g., being admitted to hospital). Participants in the study described finding it difficult to distinguish between what was and was not ‘real’. Interestingly, it was not the unusual experiences that participants found most difficult, rather they struggled with the integration of these experiences into a framework for understanding what had happened (Spaniol et al., 2002). Trying to make sense of these experiences and gaining understanding is an integral part of recovery (Andresen et al., 2003; Romano et al., 2010; Thornhill et al., 2004). Braehler and Schwannauer (2011) describe reflective function (or metacognition) as the capacity of an individual to understand and interpret their own and others’ mental states. Poorly developed reflective function may be a consequence of disrupted attachment style or adverse life events, which can result in avoidant coping styles (‘sealing over’) that inhibit the integration of different experiences. The present findings
92
Ranil Tan et al.
could be understood within such a framework, whereby traumatic past experiences may have given rise to disrupted attachment styles and impaired reflective functioning. Thus, participants struggled to make sense of their experiences and integrate them into a coherent and meaningful narrative. Interventions, which address both attachment style and reflective function, may allow more effective understanding of the disruption caused by psychosis, integration into personal identities, and increased understanding of the responses of others (Berry, Barrowclough, & Weardon, 2007; MacBeth, Gumley, Schwannauer, & Fisher, 2011). Recent work offers theoretically informed approaches to assess and intervene at specific levels of metacognitive deficit (Lysaker, Gumley, & Dimaggio, 2011; Lysaker et al., 2011). Further research should look to ascertain the exact relationship between trauma, attachment, and reflective function in FEP. An individual’s identity was another important theme evident across interviews. Participants recalled changes in their emotions, cognitions, sense of control, confidence as well as their sleep and eating patterns. What seemed particularly difficult was participants’ awareness of these changes. Studies looking at severe mental illness have found similar themes, with participants reporting recovery involving rebuilding a sense of self (Bonney & Stickley, 2008; Davidson & Strauss, 1992; Roe, 2005; Romano et al., 2010). The majority of participants found being in a psychiatric system difficult; experiences of hospital were reported as shocking, particularly as participants had no experience of such services before. Participants described the negative effects of being labelled and the lack of understanding that occurred in hospital and broader systems. Some studies have found evidence of post-traumatic stress disorder after experience of psychiatric services (Morrison, Bowe, Larkin, & Nothard, 1999). These experiences suggest that service procedures may need to be reviewed so they are in line with current guidance on recovery (Department of Health, 2001; NIMHE, 2005). Distress also related to wider family, peer, and social systems. All participants described valuing the support received from family and friends but were adversely affected by experiences of labelling and stigma. This was consistent with a range of findings that show the benefits of understanding and support from families, peers, and the wider community (Bergner et al., 2008; Noiseaux et al., 2010). Stigmatizing environments can create barriers to recovery (Corcoran et al., 2007), and young people may avoid professional help because of shame (Birchwood et al., 2007) and concerns relating to stigma (Judge, Estroff, Perkins, & Penn, 2008). Psycho-education for individuals and their families could facilitate understanding and support. Social disadvantage encompassed social isolation and difficulties with finances and work (Boydell et al., 2010; Romano et al., 2010). The relationship between social inequality and mental health has been discussed extensively (Bates, 2002; Department of Health 2003; Repper & Perkins, 2003). Miller and McClelland (2006) emphasize the importance of addressing social inequalities. From the current study, it is possible to see several experiences that place participants in disempowered positions and form potential barriers to recovery. These include abuse, drug misuse, unemployment, being diagnosed, and labelled, having few financial resources, poor housing conditions, social isolation, lack of family support, bullying, and discrimination. Taking into account cultural context and the social positions of service users may be an important way of making sense of experiences, empowering, and seeking ways to transcend social inequality (Miller & McClelland, 2006). The findings of the study suggest stressful and traumatic life events and the reactions towards them need to be addressed as part of any therapeutic work with an individual with psychosis. Using developmental and attachment frameworks when working with
Adjustment to first episode psychosis
93
individuals may be useful ways of conceptualizing difficulties and directing the course of interventions by focussing on relationship issues, social activities, or employment (Berry et al., 2007; Harrop & Trower, 2001). Psychological interventions that incorporate the categories of the proposed emergent model into formulations together with cognitive behavioural and system-level factors are likely to be beneficial (Calam & Tarrier, 2002). The present study has several limitations. There is a small sample size and the characteristics of the sample are select (e.g., half the sample were in successful employment or training, all participants were in their second or third year of treatment and all were of White British ethnicity), which may mean the results are difficult to generalize to a wider FEP population. Furthermore, not everyone with FEP will be seen within Early Intervention Services. It is important to acknowledge aspects that would be valuable areas for further research and development of the model. Some participants reported positive experiences gained from their process of recovery such as learning about oneself and becoming stronger. This is consistent with research that suggests recovery involves personal growth (Davidson & Strauss, 1992). Future work may look at exploring this area in more depth to ascertain what is helpful and unhelpful in an individual’s recovery, the types of strategies individuals use to move forward, and how this aids adjustment to FEP. The present study has shown adjustment to the experience of FEP involves the culmination of distress from a multitude of historical, psychological, and system-level factors. Themes emerging from the study can be used within psychological formulations and highlight the need for interventions to focus on trauma, identity and uncertainty (Morrison et al., 2003) as well as social and systemic issues (Miller & McClelland, 2006). The results also suggest professionals, services, and society need to consider ways of minimizing their contribution to the distress that individuals with psychosis are recovering from.
References Andresen, R., Oades, L., & Caputi, P. (2003). The experience of recovery from schizophrenia: Towards an empirically validated stage model. Australian and New Zealand Journal of Psychiatry, 37(5), 586–594. doi:10.1046/j.1440-1614.2003.01234.x Anthony, W. A. (1993). Recovery from mental illness: The guiding vision of the mental health service system in the 1990’s. Psychosocial Rehabilitation Journal, 16(4), 11–23. Bates, P. (2002). Working for Inclusion: Making inclusion a reality for people with severe mental health problems. London: Sainsbury Centre for Mental Health. Bebbington, P. (2009). Childhood sexual abuse and psychosis: Aetiology and mechanism. Epidemiologia e psichiatria sociale, 18, 284–293. doi:10.1017/S1121189X00000233 Bendall, S., McGorry, P., & Krstev, H. (2006). The trauma of being psychotic: An analysis of posttraumatic stress disorder in response to acute psychosis. In W. Larkin, & A. P. Morrison (Eds.), Trauma and Psychosis: New directions for theory and therapy (pp. 58–75). London: Routledge. Bergner, E., Leiner, A. S., Carter, T., Franz, L., Thompson, N. J., & Compton, M. T. (2008). The period of untreated psychosis before treatment initiation: A qualitative study of family members’ perspectives. Comprehensive Psychiatry, 49, 530–536. doi:10.1016/j.comppsych.2008.02.010 Berry, K., Barrowclough, C., & Weardon, A. (2007). A review of the role of adult attachment style in psychosis: Unexplored issues and questions for further research. Clinical Psychology Review, 27, 458–475. doi:10.1016/j.cpr.2006.09.006 Birchwood, M. (2003). Editorial: Pathways to emotional dysfunction in first episode psychosis. British Journal of Psychiatry, 182, 373–375. doi:10.1192/bjp.182.5.373 Birchwood, M., Iqbal, Z., & Upthegrove, R. (2005). Psychological pathways to depression in schizophrenia: Studies in acute-psychosis, post psychotic depression and auditory
94
Ranil Tan et al.
hallucinations. European Archives of General Psychiatry and Clinical Neuroscience, 255, 202–212. doi:10.1007/s00406-005-05884-4 Birchwood, M., Trower, P., Brunet, K., Gilbert, P., Iqbal, Z., & Jackson, C. (2007). Social anxiety and the shame of psychosis: A study in first episode psychosis. Behaviour Research and Therapy, 45, 1025–1037. doi:10.1016/j.brat.2006.07.011 Bonney, S., & Stickley, T. (2008). Recovery and mental health: A review of the British literature. Journal of Psychiatric and Mental Health Nursing, 15, 140–153. doi:10.1111/j.13652850.2007.01185.x Boydell, K. M., Stasiulis, E., Volpe, T., & Gladstone, B. (2010). A descriptive review of qualitative studies in first episode psychosis. Early Intervention in Psychiatry, 4, 7–24. doi:10.1111/j.1751-7893.2009.00154.x Braehler, C., & Schwannauer, M. (2011). Recovering an emerging sense of self: Exploring reflective function in recovery from adolescent-onset psychosis. Psychology and Psychotherapy: Theory, Research and Practice, 85, 48–67. doi:10.1111/j.2044-8341.2011.02018.x British Psychological Society. (2000). Recent advances in understanding mental illness and psychotic experiences. Leicester, UK: Author. Calam, R., & Tarrier, N. (2002). New developments in cognitive-behavioural case formulation. Epidemiological, systemic and social context: An integrative approach. Cognitive & Behavioural Psychotherapy, 30, 311–328. doi:10.1017/S1352465802003065 Cantwell, R., Brewin, J., Glazebrook, C., Dalkin, T., Fox, R., Medley, I., & Harrison, G. (1999). Prevalence of substance misuse in first-episode psychosis. The British Journal of Psychiatry, 174, 150–153. doi:10.1192/bjp.174.2.150 Corcoran, C., Gerson, R., Sills-Shahar, R., Nickou, C., McGlashan, T., Malaspina, D., & Davidson, L. (2007). Trajectory to a first episode psychosis: A qualitative research study with families. Early Intervention in Psychiatry, 1(4), 308–315. doi:10.1111/j.1751-7893.2007.00041.x Davidson, L., & Strauss, J. S. (1992). Sense of self in recovery from severe mental illness. British Journal of Medical Psychology, 65, 131–145. doi:10.1111/j.2044-8341.1992.tb01693.x Deegan, P. (1990). Spirit breaking: When the helping professions hurt. The Humanistic Psychologist, 18(3), 301–313. doi:10.1080/08873267.1990.9976897 Department of Health. (2001). The journey to recovery: The government’s vision for mental health care. London: HMSO. Department of Health. (2003). Tackling health inequalities: A programme for action. London: HMSO. de Shazer, S. (1988). Clues: Investigating solutions in brief therapy. New York: Norton. Gumley, A., & Schwannauer, M. (2006). Staying well after psychosis: A cognitive interpersonal approach to recovery and relapse prevention. Chichester, UK: Wiley & Sons Ltd. Hammersley, P., Read, J., Woodall, S., & Dillon, J. (2007). Childhood trauma and psychosis: The genie is out of the bottle. Journal of Psychological Trauma, 6, 7–20. doi:10.1300/J513v06n02_02 Harrop, C., & Trower, P. (2001). Why does schizophrenia develop at late adolescence? Clinical Psychology Review, 21(2), 241–266. doi:10.1016/S0272-7358(99)00047-1 Judge, A. M., Estroff, S. E., Perkins, D. O., & Penn, D. L. (2008). Recognising and responding to early psychosis: A qualitative study of individual narratives. Psychiatric Services, 59(1), 96–99. doi:10.1176/appi.ps.59.1.96 Kelly, M., & Gamble C. (2005). Exploring the concept of recovery in schizophrenia. Journal of Psychiatric and Mental Health Nursing, 12, 245–251. doi:10.1111/j.1365-2850.2005.00828.x Leavey, J. E. (2005). Youth experiences of living with mental health problems: Emergence, loss, adaptation and recovery. Canadian Journal of Community Mental Health, 24(2), 109–126. Lysaker, P. H., Buck, K. D., Carcione, A., Procacci, M., Salvatore, G., Nicolo, G., & Dimaggio, G. (2011). Addressing metacognitive capacity for self reflection in the psychotherapy for schizophrenia: A conceptual model of the key tasks and process. Psychology and Psychotherapy: Theory Research and Practice, 84, 58–69. doi:10.1348/147608310X520436 Lysaker, P. H., Gumley, A., & Dimaggio, G. (2011). Metacognitive disturbances in persons with severe mental illness: Theory correlates with psychopathology and models of psychotherapy.
Adjustment to first episode psychosis
95
Psychology and Psychotherapy: Theory, Research and Practice, 84, 1–8. doi:10.1111/j.20448341.2010.02007.x MacBeth, A., Gumley, A., Schwannauer, M., & Fisher, R. (2011). Attachment states of mind, mentalization and their correlates in a first episode psychosis sample. Psychology and Psychotherapy: Theory, Research and Practice, 84, 42–57. doi:10.1348/147608310X530246 Miller, J., & McClelland, L. (2006). Social inequalities formulation: Mad, bad and dangerous to know. In L. Johnstone, & R. Dallos (Eds.), Formulation in psychology and psychotherapy (pp. 126–153). Hove, UK: Routledge. Morrison, A. P., Bowe, S., Larkin, W., & Nothard, S. (1999). The psychological impact of psychiatric admission: Some preliminary findings. Journal of Nervous and Mental Disease, 187, 250–253. Morrison, A. P., Frame, L., & Larkin, W. (2003). Relationships between trauma and psychosis: A review and integration. British Journal of Clinical Psychology, 42, 331–353. doi:10.1348/014466503322528892 National Institute for Mental Health in England (NIMHE). (2005). NIMHE guiding statement on recovery. London: Department of Health. Noiseux, S., Tribble St-Cyr, D., Corin, E., St-Hilaire, PL., Morissette, R., Leclerc, C., . . . Gagnier, F. (2010). The process of recovery of people with mental illness: The perspectives of patients, family members and care providers: Part 1. BMC Health Services Research, 10, 161–175. doi:10.1186/1472-6963-10-161 Perry, B. M., Taylor, D., & Shaw, S. K. (2007). “You’ve got to have a positive state of mind”: An interpretative phenomenological analysis of hope and first episode psychosis. Journal of Mental Health, 16(6), 781–793. doi:10.1080/09638230701496360 Pitt, L., & Kilbride, M. (2006). Researching recovery from psychosis. Mental Health Practice, 9(7), 20–23. Repper, J., & Perkins, R. (2003). Social inclusion and recovery: A model for mental health practice. China: Balliere Tindall. Roe, D. (2005). Recovering from severe mental illness: Mutual influences of self and illness. Journal of Psychosocial Nursing and Mental Health Services, 43(12), 34–40. Romano, D. M., McCay, E., Goering, P., Boydell, K. M., & Zipursky, R. (2010). Reshaping an enduring sense of self: The process of recovery from a first episode of schizophrenia. Early Intervention in Psychiatry, 4, 243–250. doi:10.1111/j.1751-7893.2010.00187.x Smith, J. A. (1995). Semi-structured interviewing in qualitative analysis. In J. A. Smith, R. Harre, & L. Van Langenhove (Eds.), Rethinking methods in psychology (pp. 9–26). London: Sage. Spaniol, L., Wewiorski, N. J., Gagne, C., & Anthony, W. A. (2002). The process of recovery from schizophrenia. International Review of Psychiatry, 14, 327–336. doi:10.1080/0954026021000016978 Strauss, A. L., & Corbin, J. M. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). London: Sage. Tarrier, N. (2002). The use of coping strategies and self-regulation in the treatment of psychosis. In A. P. Morrison (Ed.), A casebook of cognitive therapy for psychosis (pp. 79–107). New York: Brunner-Routledge. Thornhill, H., Clare, L., & May, R. (2004). Escape, enlightenment and endurance: Narratives of recovery from psychosis. Anthropology & Medicine, 11(2), 181–199. doi:10.1080/ 13648470410001678677 Turner-Crowson, J., & Wallcraft, J. (2002). The recovery vision for mental health services and research: A British perspective. Psychiatric Rehabilitation Journal, 25(3), 245–254. Willig, C. (2001). Introducing qualitative research in psychology. Berkshire, UK: Open University Press. World Health Organisation (WHO). (2001). World health report 2001. Mental health: New understanding, new hope. Geneva, Switzerland: Author. World Health Organisation (WHO), & International Early Psychosis Association (IEPA). (2004). Early psychosis declaration. Retrieved from http://www.rethink.org/about mental illness/ early intervention/support for family and carers/the early.html Received 5 August 2011; revised version received 19 April 2012
Psychology and Psychotherapy: Theory, Research and Practice (2014), 87, 80–95 © 2012 The British Psychological Society www.wileyonlinelibrary.com
Distress, trauma, and recovery: Adjustment to first episode psychosis Ranil Tan1∗ , Rachel V. Gould2 , Helen Combes3,4 and Sarah Lehmann2 1
Rotherham Doncaster and South Humber NHS Foundation Trust, UK North Staffordshire Combined Healthcare NHS Trust, UK 3 Keele University, Newcastle-under-Lyme, UK 4 Staffordshire University, Stafford, UK 2
Objective. To understand the experiences that people with early psychosis are adjusting to and their perceived barriers to recovery. Method. Semi-structured interviews were conducted with eight participants. Grounded Theory was applied to the design and analysis. Sampling and coding ceased when saturation of the data was reached. Respondent validation was sought from participants. Results. A theoretical model was developed using Strauss and Corbin’s (1998) framework. A core category of distress was elicited, which was evident in all participants’ accounts of their recovery. Overall six main categories were identified and it was proposed that individuals were adjusting to the distress of past experiences, uncertainty, a challenged identity, being in a psychiatric system, the reaction of others and social disadvantage. Conclusions. Recovery from the distress and trauma of early psychosis does not simply involve adjustment to and recovery from a single experience or set of symptoms. The results are discussed in relation to trauma, developmental, and social inequality frameworks. Specific implications for clinical practice include incorporating the findings within formulations, developing interventions that focus on trauma, identity, and uncertainty as well as addressing the social and systemic issues identified.
Practitioner Points • Recovery from early psychosis is multi-faceted. Psychological formulations should seek to consider individual, social, and systemic factors influencing an individual’s distress to more fully conceptualize what an individual’s adjustment to early psychosis may involve. • Services and wider systems should consider iatrogenic processes, which may contribute to and maintain the distress experienced by those with early psychosis. • Education programmes that look to contextualize psychosis within a meaningful framework may help to develop understanding within wider society where a lack
∗ Correspondence should be addressed to Dr. Ranil Tan, Rotherham Doncaster and South Humber NHS Foundation Trust, Manchester Early Intervention Service, PO Box 42, Manchester M40 4AE, UK (e-mail: [email protected]).
DOI:10.1111/j.2044-8341.2012.02073.x
Adjustment to first episode psychosis
81
of knowledge and understanding serves to reinforce an individual’s sense of exclusion and difference. Psychosis refers to a group of conditions (such as schizophrenia) most likely to commence in young adults. Psychosis is characterized by changes to the way an individual thinks, feels, and understands their world (British Psychological Society, 2000). The World Health Organisation’s (WHO) report on the burden of mental illness suggests that psychosis is among the top 10 leading causes of disability or health burden (WHO, 2001). Recovery from psychosis has been the focus of much research and discussion (e.g., Andresen, Oades, & Caputi, 2003; Anthony, 1993; Deegan, 1990; Kelly & Gamble, 2005). Given the impact of psychosis, it is important to develop an understanding of the experiences people are recovering from (Anthony, 1993; Deegan, 1990; Kelly & Gamble, 2005). Repper and Perkins (2003, p. 48) suggest that people with mental health problems are recovering from ‘the multifaceted catastrophe of that experience’. This includes the trauma of past experiences, current symptoms, stigma, negative social attitudes, disempowerment, discrimination, and social exclusion. Anthony (1993) suggests that recovery from the consequences of mental distress (such as stigma, exclusion, loss of rights) can sometimes be more difficult than recovery from the distress and confusion itself. In a review of first episode psychosis (FEP) qualitative studies, Boydell, Stasiulis, Volpe, and Gladstone (2010) suggest it is paramount to understand the experience of FEP within young people’s own framework of meaning. The studies reviewed suggest the emerging themes in recovery include a number of generic social processes. These include asserting a sense of self over the subjective experiences of psychosis (achieving identity); gaining insight into the experience (acquiring perspectives); being in employment and making meaningful use of time (doing activity); and making sense of what has happened to allow people to gain more control and help re-define themselves in light of their past experiences (Spaniol, Wewiorski, Gagne, & Anthony, 2002). Adjustment to FEP When considering the process of recovery, few studies have looked at the full extent of experiences that young people with FEP are adjusting to and the potential barriers that may hinder the recovery process (Bergner et al., 2008; Corcoran et al., 2007; Noiseaux et al., 2010; Romano, McCay, Goering, Boydell, & Zipursky, 2010). Many studies of FEP refer to the confusion and lack of understanding that people with psychosis have in relation to their past and unusual experiences (Thornhill, Clare, & May, 2004). Young people report a number of psychological sequelae associated with having psychosis; these include shame (Birchwood et al., 2007), stigma (Birchwood et al., 2007; Tarrier, 2002), depression and post-psychotic depression (Birchwood, 2003; Birchwood, Iqbal, & Upthegrove, 2005), anxiety (Gumley & Schwannauer, 2006), and low self-esteem (Roe, 2005). There is evidence suggesting that psychosis may occur as a result of traumatic events (Bebbington, 2009; Morrison, Frame, & Larkin, 2003), particularly in relation to trauma experienced as a child (Hammersley, Read, Woodall, & Dillon, 2007). Furthermore the experience of psychosis has, in itself, been reported as traumatizing (Bendall, McGorry, & Krstev, 2006), both in relation to symptoms experienced and subsequent treatment within the psychiatric system. Romano et al. (2010) suggest an individual’s sense of self is re-shaped rather than reconstructed following FEP. Adjustment to the experience of psychosis may include
82
Ranil Tan et al.
taking account of personal identity before psychosis, encountering the illness and the disruption this brings, engaging in treatment and support, re-engaging in life and envisioning the future. Other reviews have also suggested similar staged models of recovery from psychosis involving moratorium, awareness, preparation, rebuilding, and growth (e.g., Andresen et al., 2003). In addition to managing traumatic life events and psychological adjustment to FEP, young people experiencing mental health problems may feel stigmatized, labelled, and experience multiple losses of identity, family, career choices, and social standing (Leavey, 2005). These experiences can inhibit adjustment to FEP and may be distressing and potentially traumatic. Psychosis often places people in disempowering positions in relation to friends, family, and society (Pitt & Kilbride, 2006). Recovery may involve empowering individuals by means of a collaborative approach with professionals and support from family and friends, that seeks to build confidence, independence, and allows individuals to gain control over their lives (Perry, Taylor, & Shaw, 2007; Spaniol et al., 2002). Guidance on recovering from FEP emphasizes recognition of individual differences and a holistic and integrative approach to treatment. This involves tackling discrimination, public understanding, and media portrayal of mental health difficulties (British Psychological Society, 2000; NIMHE, 2005). Important markers of recovery include achieving ‘ordinary lives’ such as having a home, job, family life, and friends (WHO & IEPA, 2004). Having an understanding of the distressing and potentially traumatic experiences that people with FEP are adjusting to and their reported barriers to recovery may help to focus recovery services more towards the needs of service users.
Rationale The qualitative literature has mainly focussed upon the process of recovery from FEP. Less attention has been paid to the nature of experiences that cause distress, how this distress is experienced and how it may form a barrier to recovery. Giving professionals a better understanding of what adjustment to FEP may involve and insight into potential interventions requires developing more systematic knowledge about what subjective experiences young people with FEP believe they are recovering from. Turner-Crowson and Wallcraft (2002) argue that the concept of recovery within mental health services has been appropriated by professionals and may not truly represent the language and experiences of service users. The present study used a qualitative approach to explore how young people discuss and make sense of their recovery in order to develop a model that conceptualizes this process. One particular aspect was examined: what do people say they are recovering from?
Method Design A semi-structured interview was used to guide exploration of the subject area (Smith, 1995). The interview was transcribed by the researcher and the transcripts were analysed using Grounded Theory. The interviews were conducted in community settings chosen by the service user, with little outside disturbance. Approval for the study was gained from the Local Research Ethics Committee (LREC) and the NHS Trust’s Research and Development Consortium.
Adjustment to first episode psychosis
83
Table 1. Demographic information of participant sample
Age No. (years) Gender P1 P2 P3 P4 P5 P6 P7 P8
24 25 26 22 24 24 24 25
M M M F F M M M
Ethnicity White British White British White British White British White British White British White British White British
Length of contact with Early Past Intervention Currently history of Number of Service using illicit drug admissions Employment (years) medication use to hospital status 3 3 3 3 2 3 3 3
Yes No Yes Yes Yes Yes No Yes
Yes Yes Yes No No No Yes Yes
2 1 1 1 2 1 1 1
Unemployed Employed Unemployed Student Unemployed Employed Unemployed Employed
Materials An interview schedule was constructed by the authors. Open-ended questions were asked to allow a greater flexibility of coverage and for participants to describe their experiences as freely as possible (e.g., how do you understand the word recovery? What do you feel you are recovering from? What do you need in order to help you move forward from these experiences? What is unhelpful for you in this process?). The ‘miracle question’ (de Shazer, 1988) was included within the interview schedule as a way of eliciting thoughts about wider systemic issues in relation to recovery. As interviews progressed, new questions were introduced based on what previous participants had said in their interviews (Strauss & Corbin, 1998). To avoid bias in interpretation, responses were explored and clarified, as the emerging model was developed (e.g., Do you feel the experiences you have described relate to your recovery?). The interview schedule was initially piloted with a Trainee Clinical Psychologist and minor amendments were made. All interviews were recorded on a digital tape recorder.
Participants The researcher contacted a local Early Intervention Service in the West Midlands in order to recruit participants. The service was aimed at young people aged 14–35 with FEP. In line with the Early Psychosis Declaration (WHO & IEPA, 2004) the service offered a range of interventions and support for young people within a recovery framework. Participants were included in the study if they were aged between 18 and 35 with FEP. Participants were excluded only if they were currently experiencing an acute episode of psychosis. Overall, 20 people were approached to participate in the study, of which eight agreed to take part. Participants were aged between 22 and 26 (mean = 24.25 years, standard deviation = 1.16 years). All participants were either in their second or third year of a possible 3 years with the Early Intervention Service. Five participants reported a history of previous drug use. Psychological formulation and intervention occurred within the multi-disciplinary team. Four of the participants had worked with an Early Intervention Team Clinical Psychologist. Table 1 summarizes the characteristics of the sample.
84
Ranil Tan et al.
Procedure Participants were identified and approached by their care coordinators. Participants expressed interest by posting a reply slip to the researcher. Prior to the interview, the research process was explained to each participant and consent was gained. All participants took part in a 1-hr semi-structured interview, which was audiotaped. Following the interview, participants were debriefed and given the opportunity to receive a copy of their transcript in order to validate what had been said and to omit any of the content they felt uncomfortable with prior to analysis. Six participants requested to see their transcripts, were happy with the content and did not request any changes. Two participants did not want to see their transcripts. Data analysis The interview transcripts were analysed in accordance with the principles of Grounded Theory (Strauss & Corbin, 1998). Grounded Theory involves the progressive identification and integration of ‘categories of meaning’ from the data (Willig, 2001; p. 33). Each interview was transcribed and coded before the next interview took place, to enable theories generated from each interview to be tested out and validated with participants in subsequent interviews. Transcripts were open coded, using a line-by-line analysis. As far as possible codes were in vivo, thus aiming to capture the essential quality of what was represented within the text. As the interviews progressed, themes developed; codes were assigned to categories and axial coding was used to explore the relationships between categories. Axial coding is the disaggregation of codes and their reassembly into conceptually meaningful structures. This was used in the second stage of the analysis, where the data was ‘put back together’ in order to form categories. The process involved relating categories to their subcategories. The final stage involved selective coding to establish the core category. This was determined by looking for commonalities through re-reading all transcripts and reviewing notes, codes and categories. Analytic and reflective memos, ongoing questioning, hypothesis formulation, and discussion with supervisors aided the development of the emergent model.
Credibility of analysis A number of steps were taken to minimize researcher bias. Participants were given the opportunity to receive a copy of their transcripts, to validate the content of the interviews. All codes and themes were given to a second coder who checked each code and theme with anonymized transcripts. There were discrepancies in 15 of the 656 codes (2.29%) and a consensus was reached through discussion between the researcher and the second coder. All themes were agreed. At each stage of the data collection and analytic process, the researcher met with the research supervisors to discuss experiences, reflections, and emerging themes. Theoretical sampling was used to develop theoretically relevant constructs. Each interview was used to provide concordance or dissonance with a previously determined theoretical construct, thus allowing the theory to develop. This gave the opportunity for the researcher to clarify themes and check whether they related to the research question. Negative case analysis was conducted so that negative instances (i.e., where responses did not fit the model) were analysed and explored within subsequent interviews so the final model incorporated variation but was representative of the majority of responses.
Adjustment to first episode psychosis
85
Figure 1. Theoretical model of adjustment to first episode psychosis.
Saturation of the data was achieved when no new categories were produced and the model could account for all the data obtained (Strauss & Corbin, 1998). This occurred after the sixth interview. Two further interviews were carried out to confirm that all categories had reached saturation.
Respondent validation A summary of themes was sent to all participants after the final interview. Two participants returned their questionnaires validating both the categories and overall model.
Results An emergent theoretical model was developed. The core category, main categories, and subcategories are illustrated in Figure 1. Bi-directional arrows indicate the dynamic relationship between categories. The six main categories are defined by their subcategories and each of these contains representative examples of quotes made by participants (these are shown as indented quotes with a [P] denoting the participant number). The core category refers to appraisals that the FEP experience, as a whole, was described as distressing and traumatic. The six main categories refer to more specific themes. The first category focussed on the distress of life experiences and reflected issues relating to past events and the impact of drug use. The next main category referred to psychological distress; not knowing/understanding, and a challenged identity. The final category coalesced around the themes of distress due to systems. This was defined as being in a psychiatric service, the reaction of others, and social disadvantage.
86
Ranil Tan et al.
Distress The most dominant theme (core category) was distress. This included the distress of life experiences, psychological distress, and distress due to systems. ‘I mean in a way, you can see it as a period of distress. You know completely out of balance, something isn’t right’ [P6].
The culmination of all these experiences contributed to the overall distress that participants were recovering from, P5 described this as the scars of psychosis. ‘ . . . it’s going to take me years and years to recover fully, because of the scars, bruises come and go, but the scars that it leaves you in your head is the illness and I’m stuck with it for life now’ [P5].
Core category: The distress of life experiences Participants described the distress of life experiences consisting of past traumatic experiences, which included distressing and stressful life events as well as the social impact of drug use. Main category: The effect of past experiences Distressing/stressful life events. All participants described an initial set of distressing/stressful or traumatic experiences that occurred in their lives before the onset of psychosis. Sometimes participants referred to this as a trigger. ‘I mean basically a lot of stress I mean you know I was trying to run a studio, I’d lost a lot of money on it . . . you know there was conflict with people that I was running the studio with, there was you know it’s just a big sort of stress out really. You know, I mean that’s what I blame it on’ [P7].
The majority of participants (seven) described multiple traumatic events or a prolonged nature to their distress rather than a single experience. ‘I was ill because I was in a violent relationship. And . . . my ex boyfriend, he was very violent, like every other day and I was with him for 7 years’ [P5].
These initial experiences varied across participants, ranging from abuse, adjusting to transition, through to loss and bereavement. Participants reflected on needing to move away from these situations and learn from them as part of the adjustment process. These events contributed to the psychological distress experienced by participants (e.g., feeling suicidal and depressed). Social impact of drug use. Five participants (P1, P2, P3, P7, and P8) described using drugs (particularly cannabis); drugs were used habitually over a few years. However, it was not the drug use that participants described themselves as recovering from but the social impact of using drugs, which included feeling isolated (e.g., by their peer group) and finding themselves in distressing and dangerous environments. ‘I was attacked a couple of times, some of my mates used to gang fight, this that and the other and . . . it was getting quite silly when I turned about 16–17, because they were talking about getting CS gas and things like that. And bombing peoples cars and baseball bats and this, that and the other and stuff. I just thought to myself, around that time I thought to myself I’ve got to get out of that situation’ [P1].
Adjustment to first episode psychosis
87
For some, drugs were described as offering an escape from distressing life events. However, some participants saw it as purely recreational. Overall though, participants reported feeling it was the culmination of social and emotional distress and using drugs that triggered psychotic experiences: ‘I think it’s like you’re building up to this sort of threshold and it could have been at any time. But just having the drugs I think that just tipped me over really’ [P7].
Out of the five participants who had taken recreational drugs, four also cited other sources of stressful life events. Although some participants saw a connection between these two areas, not all participants agreed with this. ‘You mentioned earlier about the connection between the drugs and the stressful event I think . . . certainly in some people’s cases I imagine there will be, but for me it was recreational I couldn’t really argue because my . . . because I had issues with my step-mum that’s why I took drugs I don’t think that would be fair’ [P8].
Core category: Psychological distress The psychological distress experienced by individuals was characterized by an overall sense of uncertainty. Participants highlighted how their own identity had been challenged by psychosis in a way that affected a number of areas including thoughts, feelings, control, and confidence. Psychological distress was both affected by past experience (e.g., loss leading to feelings of sadness) and influenced by how past experiences were perceived (e.g., seeing oneself as weak because of their reaction to abuse).
Main category: Not knowing/understanding Unusual experiences: Reality and uncertainty. All participants described having unusual experiences (sometimes described as symptoms). These ranged from experiences of paranoia, hallucinations, delusions to hearing voices. Participants described the confusion, uncertainty, and lack of understanding as being the most distressing element of these difficulties rather than the experience itself. Another difficulty participants described was trying to determine what was and was not ‘real’. This was often frightening and contributed to an overall sense of confusion about what was happening and a lack of understanding around its meaning. Understanding how such experiences happened in the first place was inevitably difficult. This uncertainty made some feel hopeless and disconnected with their environment. It also presented a challenge to peoples’ sense of self. ‘And I didn’t want to be here, I didn’t understand what was happening to me, I didn’t understand what I was seeing. I didn’t know who the people I love around me were . . . and it was just hard and I thought . . . I just thought, “Will somebody just help me?” cos like how do I get better? I’m never going to recover from this, I’m never going to get better, I don’t even understand how I got like this. This isn’t me, where’s me gone?’ [P5].
Main category: A challenged identity Feelings of distress. Many participants reported feelings of distress and the effect of this on other parts of their self (such as, their confidence). These feelings were difficult to understand, particularly as the majority of participants had not experienced such negative
88
Ranil Tan et al.
feelings previously. Trying to make sense of this distress was seen as an important aspect of recovery. ‘ . . . well when I’m depressed, basically I’m just in the house. You can’t get me off the sofa really. You’ve just got . . . don’t really know what to do with myself. Don’t really understand you know, why I’m feeling suicidal. Because that was very upsetting. Cos it’s not me to feel like that, to feel depressed and I was like ‘what the hell is this all about?’’ [P6].
Chaotic thoughts. All participants noticed a difference in their usual way of thinking. This was described as having ‘mixed-up’ thoughts. For example, one participant noticed this in hospital: ‘ . . . my mind was really active at the time, but active in a bad way, like a niggling kind of active’ [P2].
Many participants described not having a grasp of their thoughts, as they were either too chaotic or did not make sense for example, ‘ . . . your thoughts are just irrational and there’s a strange sort of logic to it really’ [P6].
Initially thought processes did not seem to make sense, but understanding emerged later. This was something all participants identified as an example of how a particular view of themselves (e.g., of having ‘logical’ thoughts) was challenged through their experience.
Loss of control. Participants described losing their sense of control as a result of their experience. ‘ . . . because psychosis takes away your control. Because it seems like . . . OK well when I was at university, I felt like I was paralysed by fear, because I just felt like I couldn’t do anything’ [P4].
In order to aid recovery, there was a need to do things that contributed to ‘restoring control’. ‘I sort of needed the management in it and that’s the control aspect. It’s like we did a sort of plan a getting well plan . . . like the obvious one for me is the sleep, making sure I’m sleeping right. And then it’s the things that contribute to that, diet, what I’m doing in the day, exercise for me is important as well, so, cos obviously you’re more tired to sleep. It’s putting those controlling factors in’ [P6].
Loss of self-confidence. Participants also reported the effect the experience had on their self-confidence. ‘I was really confident at college, slightly less so at school, it wasn’t too bad, then sort of going through uni, it was sort of mediocre and then after the breakdown it plummeted really’ [P8].
As P8 described individuals noticed becoming less confident about how they felt about themselves and what they could do over time: ‘I found myself needing justification and needing reassurance more than I used to . . . I’m looking for that, almost constantly’ [P2].
Adjustment to first episode psychosis
89
Again, there was a recognition that the way participants felt about themselves was different to how they used to feel and psychosis had in some way challenged their confidence and sense of identity. Physical effects (sleep/appetite). A number of participants described the impact of psychosis on their physical well-being. In particular, participants reported having a poorer appetite and finding it difficult to sleep. For example, one participant said: ‘In the end I got to the stage where I wasn’t eating, I just made out I was eating and I just . . . wasn’t sleeping, I just couldn’t look after myself’ [P5].
As with many participants, the lack of sleep and poor appetite were clear signs that something was not right and they needed help. It was also a more outward sign of distress, which other people (e.g., parents) were able to notice. Core category: Distress due to systems Participants reported distress related to the systems around them, perpetuated by the psychiatric service, the reactions of other people and social disadvantage. This also contributed to the feelings of uncertainty and challenged identity (psychological distress) described above. Main category: Being in a psychiatric service Shock (of being so young). For all participants, it was their first contact with psychiatric services. The experience of being in hospital particularly highlighted their status as adults within a psychiatric system. ‘I was 19, just 19 so like, and I was classed as an adult. I don’t know it was hard, I wanted my mum to stay with me on the first night really but she couldn’t’ [P4].
Similarly, P5 described how difficult it was to adjust to being in a hospital environment on your own. She described how the harsh reality of her experience became more apparent when in hospital. ‘It was shock and I was stuck and I was like, I’ve never left me mum in my life and I’m like ‘mum, mum’ pulling on her clothes ‘take me home, take me home’ she said ‘I’m sorry’ and she just grabbed me hands off her and said ‘I’m sorry [P5]’ and she went, she was crying and she walked out and left me and I’m like, I’ve got no kids, I’ve lost me kids, I’m 22, I’m in a psychiatric unit – I never expected something like that to happen. All those years when I was growing up I didn’t think I was going to end up in a psychiatric unit at 22 years old’ [P5].
Negative experience of being in hospital. Being in hospital was viewed negatively by most participants. Some reported not feeling as though they had received the right kind of support. This added to their difficulties: ‘I was seeing people at the [anonymized] Hospital at the time, I didn’t really get the support I needed from them so it made it a bit harder’ [P6].
Moreover, the experience of being in hospital (e.g., being sectioned, having to take medication, restricted freedom, loss of privacy) contributed to their distress. When asked to clarify what he didn’t like about being in hospital one participant replied:
90
Ranil Tan et al.
‘ . . . not wanting to be there for a start. You see that’s the thing I mean the experience of being in hospital was more traumatic than the episode itself’ [P7].
Main category: The reaction of others Lack of understanding. The majority of participants reported how difficult it was for other people to understand their position and difficulties. This was not surprising as many participants were struggling themselves to understand their own experience. This lack of understanding was recognized when other people ignored or tried to avoid talking about what was happening, which was deemed as unhelpful. ‘ . . . they thought I was like going through a . . . like a . . . me own thing or whatever. They just thought I was going through something, so they just thought leave him to it, he’ll be all right in a couple of years or whatever’ [P1].
The effect of not being understood had implications for the way participants felt (e.g., feeling lonely because nobody could relate to them), but it also meant other people could not provide the support they needed. There was a sense that other people would not be able to understand what participants had been through unless they had also been through a similar experience. This was not only frustrating but isolated people from those around them. The effects of being labelled (seen as different). Participants described being labelled and treated differently. This often related to the way other people perceived their experience: ‘You get labelled, that’s what they say, don’t you? When you’re mad, you’re always mad. Their Dad will always says to me “you’ve always been mad, no wonder you’re on tablets” and things like that’ [P5].
Being labelled and treated differently was apparent from both family members and wider society. For example, P2 described being laughed at by professionals when sectioned: ‘I received quite a bit of mocking I remember when I was being taken into hospital and that really . . . by the bloody ambulance people coming in and I really, thinking back did not need that at the time’ [P2].
Main category: Social disadvantage Isolation. Individuals described a sense of isolation prior to, during, and after their experience of psychosis. This related both to social isolation (i.e., having few friends and sources of support) and feeling personally isolated. Participants acknowledged that part of the adjustment process was to integrate back into their own social environment, however as P1 described this takes time. ‘You can’t just pick someone off the street and say ‘excuse me, can you be my friend?’ or whatever. It takes a lot of time, it takes, it just takes time to create something like that. So that’s what I’m doing at the moment’ [P1].
Difficulties with finances and work. A number of participants (P1, P3, P4, P5, and P7) described unemployment and having less financial security after their experience of psychosis. Finding work was reported as something most participants wanted but was
Adjustment to first episode psychosis
91
difficult to achieve. In particular they described the importance of finding somewhere they wanted to work: ‘Yeah it would make a big difference, but I don’t want to find work which is . . . like work in a factory or something like that, cos that would make me worse than make me better’ [P3].
Participants reflected upon the change in their situation and how dramatic this had been across the duration of their experience of psychosis. P7 reported the change from being in full-time employment to being unemployed: ‘I’ve gone from having a job at a warehouse to quitting that and being self employed to being on benefits. You know that was kind of really hard’ [P7].
In addition to this, participants identified changes in their social environment including the move from being financially independent to accessing benefits and in some cases having to move home to live with parents.
Discussion The aim of the present study was to understand the experiences that people with FEP are adjusting to and their perceived barriers to recovery. Young people with FEP who took part in the study, reported adjustment to a pervasive sense of distress, depicted by six clear descriptions of distressing and traumatic experiences. These were the distress of life experiences, psychological distress (not knowing/understanding and a challenged identity), and distress due to systems (being in a psychiatric service, the reactions of others, and social disadvantage). Consistent with previous research (Bebbington, 2009; Hammersley et al., 2007; Morrison et al., 2003), all participants described past experiences relating to stressful and traumatic life events (e.g., abuse, adjusting to transition, loss) and/or prolonged and heavy drug use (Cantwell et al., 1999). The environmental and social circumstances participants found themselves in as a result of drug use (e.g., being involved in crime and isolation) were also highlighted as sources of distress. Participants described many feelings and thoughts regarding drug use. Addressing these, as well as the links with the possible trauma sequelae experienced by individuals would be important aspects of focus in therapeutic intervention. Themes identified in the study align with existing ideas regarding recovery as a process requiring resolution of issues of identity, meaning and taking responsibility (Andresen et al., 2003; Noiseux et al., 2010). Psychological distress related to two aspects: not knowing/understanding and a challenged identity. Participants reported a variety of unusual experiences, which gave rise to uncertainty and a lack of understanding about these experiences and what they led to (e.g., being admitted to hospital). Participants in the study described finding it difficult to distinguish between what was and was not ‘real’. Interestingly, it was not the unusual experiences that participants found most difficult, rather they struggled with the integration of these experiences into a framework for understanding what had happened (Spaniol et al., 2002). Trying to make sense of these experiences and gaining understanding is an integral part of recovery (Andresen et al., 2003; Romano et al., 2010; Thornhill et al., 2004). Braehler and Schwannauer (2011) describe reflective function (or metacognition) as the capacity of an individual to understand and interpret their own and others’ mental states. Poorly developed reflective function may be a consequence of disrupted attachment style or adverse life events, which can result in avoidant coping styles (‘sealing over’) that inhibit the integration of different experiences. The present findings
92
Ranil Tan et al.
could be understood within such a framework, whereby traumatic past experiences may have given rise to disrupted attachment styles and impaired reflective functioning. Thus, participants struggled to make sense of their experiences and integrate them into a coherent and meaningful narrative. Interventions, which address both attachment style and reflective function, may allow more effective understanding of the disruption caused by psychosis, integration into personal identities, and increased understanding of the responses of others (Berry, Barrowclough, & Weardon, 2007; MacBeth, Gumley, Schwannauer, & Fisher, 2011). Recent work offers theoretically informed approaches to assess and intervene at specific levels of metacognitive deficit (Lysaker, Gumley, & Dimaggio, 2011; Lysaker et al., 2011). Further research should look to ascertain the exact relationship between trauma, attachment, and reflective function in FEP. An individual’s identity was another important theme evident across interviews. Participants recalled changes in their emotions, cognitions, sense of control, confidence as well as their sleep and eating patterns. What seemed particularly difficult was participants’ awareness of these changes. Studies looking at severe mental illness have found similar themes, with participants reporting recovery involving rebuilding a sense of self (Bonney & Stickley, 2008; Davidson & Strauss, 1992; Roe, 2005; Romano et al., 2010). The majority of participants found being in a psychiatric system difficult; experiences of hospital were reported as shocking, particularly as participants had no experience of such services before. Participants described the negative effects of being labelled and the lack of understanding that occurred in hospital and broader systems. Some studies have found evidence of post-traumatic stress disorder after experience of psychiatric services (Morrison, Bowe, Larkin, & Nothard, 1999). These experiences suggest that service procedures may need to be reviewed so they are in line with current guidance on recovery (Department of Health, 2001; NIMHE, 2005). Distress also related to wider family, peer, and social systems. All participants described valuing the support received from family and friends but were adversely affected by experiences of labelling and stigma. This was consistent with a range of findings that show the benefits of understanding and support from families, peers, and the wider community (Bergner et al., 2008; Noiseaux et al., 2010). Stigmatizing environments can create barriers to recovery (Corcoran et al., 2007), and young people may avoid professional help because of shame (Birchwood et al., 2007) and concerns relating to stigma (Judge, Estroff, Perkins, & Penn, 2008). Psycho-education for individuals and their families could facilitate understanding and support. Social disadvantage encompassed social isolation and difficulties with finances and work (Boydell et al., 2010; Romano et al., 2010). The relationship between social inequality and mental health has been discussed extensively (Bates, 2002; Department of Health 2003; Repper & Perkins, 2003). Miller and McClelland (2006) emphasize the importance of addressing social inequalities. From the current study, it is possible to see several experiences that place participants in disempowered positions and form potential barriers to recovery. These include abuse, drug misuse, unemployment, being diagnosed, and labelled, having few financial resources, poor housing conditions, social isolation, lack of family support, bullying, and discrimination. Taking into account cultural context and the social positions of service users may be an important way of making sense of experiences, empowering, and seeking ways to transcend social inequality (Miller & McClelland, 2006). The findings of the study suggest stressful and traumatic life events and the reactions towards them need to be addressed as part of any therapeutic work with an individual with psychosis. Using developmental and attachment frameworks when working with
Adjustment to first episode psychosis
93
individuals may be useful ways of conceptualizing difficulties and directing the course of interventions by focussing on relationship issues, social activities, or employment (Berry et al., 2007; Harrop & Trower, 2001). Psychological interventions that incorporate the categories of the proposed emergent model into formulations together with cognitive behavioural and system-level factors are likely to be beneficial (Calam & Tarrier, 2002). The present study has several limitations. There is a small sample size and the characteristics of the sample are select (e.g., half the sample were in successful employment or training, all participants were in their second or third year of treatment and all were of White British ethnicity), which may mean the results are difficult to generalize to a wider FEP population. Furthermore, not everyone with FEP will be seen within Early Intervention Services. It is important to acknowledge aspects that would be valuable areas for further research and development of the model. Some participants reported positive experiences gained from their process of recovery such as learning about oneself and becoming stronger. This is consistent with research that suggests recovery involves personal growth (Davidson & Strauss, 1992). Future work may look at exploring this area in more depth to ascertain what is helpful and unhelpful in an individual’s recovery, the types of strategies individuals use to move forward, and how this aids adjustment to FEP. The present study has shown adjustment to the experience of FEP involves the culmination of distress from a multitude of historical, psychological, and system-level factors. Themes emerging from the study can be used within psychological formulations and highlight the need for interventions to focus on trauma, identity and uncertainty (Morrison et al., 2003) as well as social and systemic issues (Miller & McClelland, 2006). The results also suggest professionals, services, and society need to consider ways of minimizing their contribution to the distress that individuals with psychosis are recovering from.
References Andresen, R., Oades, L., & Caputi, P. (2003). The experience of recovery from schizophrenia: Towards an empirically validated stage model. Australian and New Zealand Journal of Psychiatry, 37(5), 586–594. doi:10.1046/j.1440-1614.2003.01234.x Anthony, W. A. (1993). Recovery from mental illness: The guiding vision of the mental health service system in the 1990’s. Psychosocial Rehabilitation Journal, 16(4), 11–23. Bates, P. (2002). Working for Inclusion: Making inclusion a reality for people with severe mental health problems. London: Sainsbury Centre for Mental Health. Bebbington, P. (2009). Childhood sexual abuse and psychosis: Aetiology and mechanism. Epidemiologia e psichiatria sociale, 18, 284–293. doi:10.1017/S1121189X00000233 Bendall, S., McGorry, P., & Krstev, H. (2006). The trauma of being psychotic: An analysis of posttraumatic stress disorder in response to acute psychosis. In W. Larkin, & A. P. Morrison (Eds.), Trauma and Psychosis: New directions for theory and therapy (pp. 58–75). London: Routledge. Bergner, E., Leiner, A. S., Carter, T., Franz, L., Thompson, N. J., & Compton, M. T. (2008). The period of untreated psychosis before treatment initiation: A qualitative study of family members’ perspectives. Comprehensive Psychiatry, 49, 530–536. doi:10.1016/j.comppsych.2008.02.010 Berry, K., Barrowclough, C., & Weardon, A. (2007). A review of the role of adult attachment style in psychosis: Unexplored issues and questions for further research. Clinical Psychology Review, 27, 458–475. doi:10.1016/j.cpr.2006.09.006 Birchwood, M. (2003). Editorial: Pathways to emotional dysfunction in first episode psychosis. British Journal of Psychiatry, 182, 373–375. doi:10.1192/bjp.182.5.373 Birchwood, M., Iqbal, Z., & Upthegrove, R. (2005). Psychological pathways to depression in schizophrenia: Studies in acute-psychosis, post psychotic depression and auditory
94
Ranil Tan et al.
hallucinations. European Archives of General Psychiatry and Clinical Neuroscience, 255, 202–212. doi:10.1007/s00406-005-05884-4 Birchwood, M., Trower, P., Brunet, K., Gilbert, P., Iqbal, Z., & Jackson, C. (2007). Social anxiety and the shame of psychosis: A study in first episode psychosis. Behaviour Research and Therapy, 45, 1025–1037. doi:10.1016/j.brat.2006.07.011 Bonney, S., & Stickley, T. (2008). Recovery and mental health: A review of the British literature. Journal of Psychiatric and Mental Health Nursing, 15, 140–153. doi:10.1111/j.13652850.2007.01185.x Boydell, K. M., Stasiulis, E., Volpe, T., & Gladstone, B. (2010). A descriptive review of qualitative studies in first episode psychosis. Early Intervention in Psychiatry, 4, 7–24. doi:10.1111/j.1751-7893.2009.00154.x Braehler, C., & Schwannauer, M. (2011). Recovering an emerging sense of self: Exploring reflective function in recovery from adolescent-onset psychosis. Psychology and Psychotherapy: Theory, Research and Practice, 85, 48–67. doi:10.1111/j.2044-8341.2011.02018.x British Psychological Society. (2000). Recent advances in understanding mental illness and psychotic experiences. Leicester, UK: Author. Calam, R., & Tarrier, N. (2002). New developments in cognitive-behavioural case formulation. Epidemiological, systemic and social context: An integrative approach. Cognitive & Behavioural Psychotherapy, 30, 311–328. doi:10.1017/S1352465802003065 Cantwell, R., Brewin, J., Glazebrook, C., Dalkin, T., Fox, R., Medley, I., & Harrison, G. (1999). Prevalence of substance misuse in first-episode psychosis. The British Journal of Psychiatry, 174, 150–153. doi:10.1192/bjp.174.2.150 Corcoran, C., Gerson, R., Sills-Shahar, R., Nickou, C., McGlashan, T., Malaspina, D., & Davidson, L. (2007). Trajectory to a first episode psychosis: A qualitative research study with families. Early Intervention in Psychiatry, 1(4), 308–315. doi:10.1111/j.1751-7893.2007.00041.x Davidson, L., & Strauss, J. S. (1992). Sense of self in recovery from severe mental illness. British Journal of Medical Psychology, 65, 131–145. doi:10.1111/j.2044-8341.1992.tb01693.x Deegan, P. (1990). Spirit breaking: When the helping professions hurt. The Humanistic Psychologist, 18(3), 301–313. doi:10.1080/08873267.1990.9976897 Department of Health. (2001). The journey to recovery: The government’s vision for mental health care. London: HMSO. Department of Health. (2003). Tackling health inequalities: A programme for action. London: HMSO. de Shazer, S. (1988). Clues: Investigating solutions in brief therapy. New York: Norton. Gumley, A., & Schwannauer, M. (2006). Staying well after psychosis: A cognitive interpersonal approach to recovery and relapse prevention. Chichester, UK: Wiley & Sons Ltd. Hammersley, P., Read, J., Woodall, S., & Dillon, J. (2007). Childhood trauma and psychosis: The genie is out of the bottle. Journal of Psychological Trauma, 6, 7–20. doi:10.1300/J513v06n02_02 Harrop, C., & Trower, P. (2001). Why does schizophrenia develop at late adolescence? Clinical Psychology Review, 21(2), 241–266. doi:10.1016/S0272-7358(99)00047-1 Judge, A. M., Estroff, S. E., Perkins, D. O., & Penn, D. L. (2008). Recognising and responding to early psychosis: A qualitative study of individual narratives. Psychiatric Services, 59(1), 96–99. doi:10.1176/appi.ps.59.1.96 Kelly, M., & Gamble C. (2005). Exploring the concept of recovery in schizophrenia. Journal of Psychiatric and Mental Health Nursing, 12, 245–251. doi:10.1111/j.1365-2850.2005.00828.x Leavey, J. E. (2005). Youth experiences of living with mental health problems: Emergence, loss, adaptation and recovery. Canadian Journal of Community Mental Health, 24(2), 109–126. Lysaker, P. H., Buck, K. D., Carcione, A., Procacci, M., Salvatore, G., Nicolo, G., & Dimaggio, G. (2011). Addressing metacognitive capacity for self reflection in the psychotherapy for schizophrenia: A conceptual model of the key tasks and process. Psychology and Psychotherapy: Theory Research and Practice, 84, 58–69. doi:10.1348/147608310X520436 Lysaker, P. H., Gumley, A., & Dimaggio, G. (2011). Metacognitive disturbances in persons with severe mental illness: Theory correlates with psychopathology and models of psychotherapy.
Adjustment to first episode psychosis
95
Psychology and Psychotherapy: Theory, Research and Practice, 84, 1–8. doi:10.1111/j.20448341.2010.02007.x MacBeth, A., Gumley, A., Schwannauer, M., & Fisher, R. (2011). Attachment states of mind, mentalization and their correlates in a first episode psychosis sample. Psychology and Psychotherapy: Theory, Research and Practice, 84, 42–57. doi:10.1348/147608310X530246 Miller, J., & McClelland, L. (2006). Social inequalities formulation: Mad, bad and dangerous to know. In L. Johnstone, & R. Dallos (Eds.), Formulation in psychology and psychotherapy (pp. 126–153). Hove, UK: Routledge. Morrison, A. P., Bowe, S., Larkin, W., & Nothard, S. (1999). The psychological impact of psychiatric admission: Some preliminary findings. Journal of Nervous and Mental Disease, 187, 250–253. Morrison, A. P., Frame, L., & Larkin, W. (2003). Relationships between trauma and psychosis: A review and integration. British Journal of Clinical Psychology, 42, 331–353. doi:10.1348/014466503322528892 National Institute for Mental Health in England (NIMHE). (2005). NIMHE guiding statement on recovery. London: Department of Health. Noiseux, S., Tribble St-Cyr, D., Corin, E., St-Hilaire, PL., Morissette, R., Leclerc, C., . . . Gagnier, F. (2010). The process of recovery of people with mental illness: The perspectives of patients, family members and care providers: Part 1. BMC Health Services Research, 10, 161–175. doi:10.1186/1472-6963-10-161 Perry, B. M., Taylor, D., & Shaw, S. K. (2007). “You’ve got to have a positive state of mind”: An interpretative phenomenological analysis of hope and first episode psychosis. Journal of Mental Health, 16(6), 781–793. doi:10.1080/09638230701496360 Pitt, L., & Kilbride, M. (2006). Researching recovery from psychosis. Mental Health Practice, 9(7), 20–23. Repper, J., & Perkins, R. (2003). Social inclusion and recovery: A model for mental health practice. China: Balliere Tindall. Roe, D. (2005). Recovering from severe mental illness: Mutual influences of self and illness. Journal of Psychosocial Nursing and Mental Health Services, 43(12), 34–40. Romano, D. M., McCay, E., Goering, P., Boydell, K. M., & Zipursky, R. (2010). Reshaping an enduring sense of self: The process of recovery from a first episode of schizophrenia. Early Intervention in Psychiatry, 4, 243–250. doi:10.1111/j.1751-7893.2010.00187.x Smith, J. A. (1995). Semi-structured interviewing in qualitative analysis. In J. A. Smith, R. Harre, & L. Van Langenhove (Eds.), Rethinking methods in psychology (pp. 9–26). London: Sage. Spaniol, L., Wewiorski, N. J., Gagne, C., & Anthony, W. A. (2002). The process of recovery from schizophrenia. International Review of Psychiatry, 14, 327–336. doi:10.1080/0954026021000016978 Strauss, A. L., & Corbin, J. M. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). London: Sage. Tarrier, N. (2002). The use of coping strategies and self-regulation in the treatment of psychosis. In A. P. Morrison (Ed.), A casebook of cognitive therapy for psychosis (pp. 79–107). New York: Brunner-Routledge. Thornhill, H., Clare, L., & May, R. (2004). Escape, enlightenment and endurance: Narratives of recovery from psychosis. Anthropology & Medicine, 11(2), 181–199. doi:10.1080/ 13648470410001678677 Turner-Crowson, J., & Wallcraft, J. (2002). The recovery vision for mental health services and research: A British perspective. Psychiatric Rehabilitation Journal, 25(3), 245–254. Willig, C. (2001). Introducing qualitative research in psychology. Berkshire, UK: Open University Press. World Health Organisation (WHO). (2001). World health report 2001. Mental health: New understanding, new hope. Geneva, Switzerland: Author. World Health Organisation (WHO), & International Early Psychosis Association (IEPA). (2004). Early psychosis declaration. Retrieved from http://www.rethink.org/about mental illness/ early intervention/support for family and carers/the early.html Received 5 August 2011; revised version received 19 April 2012
