535753

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ISP0010.1177/0020764014535753International Journal of Social Psychiatryde Wet et al.

E CAMDEN SCHIZOPH

Article

Hearing their voices: The lived experience of recovery from first-episode psychosis in schizophrenia in South Africa

International Journal of Social Psychiatry 2015, Vol. 61(1) 27­–32 © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0020764014535753 isp.sagepub.com

Anneliese de Wet1, Leslie Swartz1 and Bonginkosi Chiliza2

Abstract Background: Recovery was previously regarded as a somewhat unattainable goal, and the subjective experience was de-emphasised. Lately, the person and his or her experiences are emphasised. Material: Seven participants were interviewed regarding their experience of recovery from first-episode psychosis in schizophrenia. Data were analysed using interpretative phenomenological analysis (IPA). Discussion: Support and having to care for another are possibly the greatest contributors to their recovery. Spirituality plays an important role. Stigma, found to be ingrained and pervasive, could be a barrier to recovery. The rediscovery by the participants of their abilities (re)introduced a sense of agency. Conclusion: The narrative in the process of recovery is crucial. Keywords Schizophrenia, recovery, lived experience, first-episode psychosis, interpretative phenomenological analysis, South Africa

Introduction and background to the study Schizophrenia is a serious mental disorder which affects about 24 million people worldwide, according to the World Health Organization (WHO) (2013), most of who live in developing countries. Through studies such as the International Study of Schizophrenia by the WHO, it has been suggested that there may be a better outcome in schizophrenia in low- and middle-income countries (Cohen, Patel, Thara, & Gureje, 2008), but surprisingly little is known about the process of recovery in these contexts. Recovery in schizophrenia was regarded, for a very long time, as a somewhat unattainable goal. In addition, the emphasis on empirical studies of schizophrenia as measured by standardised instruments, contributed to an environment in which studies on the subjective experience of recovery were de-emphasised (Davidson, 2003). With rapid developments in both biological and psychotherapeutic treatment methods, along with a burgeoning and articulate service user movement, recovery has come to be seen as a legitimate focus for treatment and research (Davidson, 2003). A person living with schizophrenia is viewed as a person apart from his or her illness, someone who responds uniquely to the illness and someone who may have the ability to recover from it (Davidson, 2003).

From this view, the person is now able to contribute actively and meaningfully to the understanding of the illness. It becomes crucially important to explore recovery in an attempt to understand what the person experiences when he or she is ‘seeking to move towards recovery’ (Geekie, Randal, Lampshire, & Read, 2012, p. 11) from a psychotic episode in schizophrenia. People with schizophrenia are increasingly viewed as active agents in their own treatment, and respect for this agency is important not only from an ethical point of view but also in order to scaffold recovery itself (Bargenquast & Schweitzer, 2012). The South African context in which this study took place poses specific challenges, such as limited economic

1Alan

J Flisher Centre for Public Mental Health, Department of Psychology, Stellenbosch University, Stellenbosch, South Africa 2Department of Psychiatry, Stellenbosch University, Stellenbosch, South Africa Corresponding author: Leslie Swartz, Alan J Flisher Centre for Public Mental Health, Department of Psychology, Stellenbosch University, Private Bag X1, Matieland, Stellenbosch 7602, South Africa. Email: [email protected]

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International Journal of Social Psychiatry 61(1)

Table 1.  Study participants. Participant

Age (years)

Race

Home language

Diagnosis

Rachel Mary Christine Conrad Andrew Fred Steven

46 28 42 45 32 31 23

Coloured Coloured Coloured White Coloured Coloured Coloured

Afrikaans English English Afrikaans Afrikaans English Afrikaans

Paranoid schizophrenia Schizophreniform disorder Schizophrenia Schizophrenia Paranoid schizophrenia Paranoid schizophrenia Schizophreniform disorder

All names are pseudonyms.

resources and socio-economic conditions that are far from ideal (Western Cape Government, Department of Health, 2013). The focus of the proposed healthcare plan of the government in the province of the Western Cape in South Africa’s Department of Health (2013) is to, among others, use resources based within the community to relieve the burden of mental disorders, such as schizophrenia, in the province. This will require of researchers and those involved to be resourceful in designing community-based interventions to address this serious disorder, and the first step in this process is understanding what resources people who are in recovery from schizophrenia believe have contributed to their good outcome. Against this background, we investigated how a small group of participants experienced their recovery from first-episode psychosis in schizophrenia in Cape Town, South Africa. As far as we are aware, this is the first study of its kind in this context.

Methods Participants We recruited seven participants as part of a larger study on first-episode psychosis. Interviews were conducted with the participants, of whom three were English-speaking and four Afrikaans-speaking. The ages of the participants varied between 28 and 46 years, with a mean age of 35.29 (standard deviation (SD) = 9.01) years. The diagnoses of the participants, as provided by the research unit where the larger study was conducted and from where the participants were recruited, were schizophrenia, paranoid schizophrenia or schizophreniform disorder. All participants were regarded as in symptomatic remission at the time of the interviews. Symptomatic remission was determined using the criteria set by Andreasen et al. (2005). The details of study participants are set out in Table 1.

Procedure Ethical clearance for this study was obtained from the Human Research Ethics Committee at Stellenbosch University

(Ethics reference number: N06/08/148). Thereafter, the project leader of the larger study, the third author (B.C.), identified those participants in their study who, according to the formal criteria they had set, fared the best in treatment and who met the criteria set for this study. The requirements for participation in this study were as follows: the participants were not actively psychotic, they were in remission from their first psychotic episode at the time that the interviews were conducted and either Afrikaans or English was their language of preference. Regarding this last requirement, interviews were conducted only in Afrikaans and English, with Afrikaans- and English-speaking participants, respectively, because the first author (A.D.W.) was only able to speak and understand these two languages and Afrikaans is the dominant language in the Western Cape. Since the study focussed on eliciting the lived experience of the participants first hand, it was imperative that A.D.W. was able to grasp the essence of the experiences that each participant was attempting to convey and in a language that he or she was most comfortable engaging in. A.D.W. then approached prospective participants and requested their permission by explaining the research and asking them to sign consent forms to conduct the intended interviews. Participants were assured of the confidentiality of their identities. A.D.W. conducted two semi-structured interviews, of between 21 minutes and approximately 75 minutes each, with each participant, using some structured questions and some open-ended questions to guide the interview process. This was regarded as best suited to the exploration of participants’ experiences and perceptions and to eliciting a thick description. The use of a semi-structured interview allowed for greater flexibility in the questions being asked and the responses being given, which is a defining characteristic of interpretative phenomenological analysis (IPA) (Smith & Osborn, 2004), the approach used to analyse the data. The questions included in the interview schedule were based on those aspects of experience of recovery from serious mental illness, which emerged from the existing literature. However, these questions served merely as a guide, since the participants were allowed to direct the course of the interviews.

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de Wet et al. In the spirit of hearing the voices of the participants, preconceived ideas about recovery, informed by the literature, were limited to a minimum. This allowed for the uniqueness of experiences of the individual participants to be brought to the fore.

Data analysis The interviews were audio-recorded, with the permission of the participants, and transcribed verbatim by A.D.W. and then analysed with the use of IPA. IPA is an inductive approach which was developed specifically for the discipline of psychology by Jonathan Smith of Birkbeck College, University of London in the United Kingdom (Smith, Flowers, & Larkin, 2009), and on this basis alone, it is already a well-suited approach to the data. IPA aims to be a tool to assist the researcher in grasping, in great detail, the meaning individuals create from their own and, importantly, significant experiences in life (Smith & Osborn, 2004). It is based on phenomenology, hermeneutics and idiography (Smith et al., 2009). Using phenomenology as a basis for IPA allows the researcher to place emphasis on the studying of the individual’s experience as the individual truly experiences it and not, in the first instance, on a theoretical or conceptual approach. Even though this methodology is deeply rooted in phenomenology, it does acknowledge the need for the researcher to use his or her skills of interpretation to comprehend what the participant communicates to him or her (Smith & Osborn, 2004). The idiographic nature of IPA, first, allows the focus to be on the individuality of the participants’ particular experiences in a given context and, second, pays great attention to the detail contained in such experiences (Smith et al., 2009). The aim is to grasp participants’ experiences and not, in the first instance, to be able to generalise to a population, which is often the aim with quantitative and even other qualitative data analysis methods. In line with this, the aim of this study was specifically not to generalise to a population, but, among others, to deepen the understanding by the authors of the lived experience of recovery from first-episode psychosis in schizophrenia. In order to explore the experiences of the participants in great detail, the number of participants in research employing IPA was limited to small numbers, with the suggestion of between three and six participants, and the interviews were conducted in a semi-structured manner (Smith et al., 2009). The semi-structured nature of the interviews creates a space in which the participants determined to a large extent the course of the interview (Smith et al., 2009). The interviews were also conducted in an open-ended way.

Results and discussion Through analysis of the transcripts of the interviews several themes emerged. These themes were as follows: keeping busy or having a job, support, taking responsibility for themselves or independence, insight into the illness and knowing what to expect in future, the importance of the participants’ positive attitude and their belief in their own abilities, awareness of limitations, the role of having to care for another, adapting to and accepting circumstances, stigma and the role of spirituality. These themes are regarded as the factors associated with participants’ experience of recovery. We will focus on the predominant ones.

Factors associated with participants’ experience of recovery Support. According to the participants, support and its natural corollary, having to care for another, are possibly the greatest contributors to the recovery of persons faced with schizophrenia. In this study, six of the seven participants said that support was a contributing factor in their recovery. Fred explained the lack of support he received at home compared to that which he received at work very touchingly, as follows: So ja [a colloquial term for yes], but I would say that the situation at home hasn’t changed that much. I still seclude myself and that, but when I come to work it’s like I’m in heaven. You know, like I feel like I’m free, I can do anything.

Mary emphasised the important role the support of the nursing staff at the research unit, where A.D.W. met the participants, played in her recovery: I feel like Sister Irene [one of the nurses in the research unit where the study was conducted] is like a mother to me, another mother, the way she care for me and gentle and [cries]. I always appreciate it. [Cries] They’re very sympathetic and they made you feel normal, that you can do normal things again.

These accounts indicate that even if the participants only received support in only certain environments that they were part of, it contributed to their sense of agency in the world and supported them in believing in their abilities. Having to care for another is aptly described by Fred when he described the attitude that he felt was needed: You need to, need to be productive part in society and, how can I say, do positive things for … to help other … do something for someone else for a change. Not always be selfcentered, you know.

30 Spirituality.  Participants highlighted the important role of spirituality in their recovery, despite it being commonly regarded as a controversial topic. Steven believed that prayer was stronger in helping him recover than the medication given to him by the doctors: … we always believe to pray is the best way. You must, medicine helps too, but prayer has the most power. It carries power.

Rachel added to what Steven remarked, when she said, I learnt that if I go on my knees every night and pray to God, then I say to God to help me. And, in the mornings it makes me a stronger person every day.

International Journal of Social Psychiatry 61(1) Rachel, when asked how one knows that you are recovering, said, … because you do things again like you used to, before you became ill. Then you can see, you’re looking after yourself and you’re doing things. You’re independent of others. Then you’re busy recovering.

Andrew uses an image, which he also drew as steps on a piece of paper, So, recovery I see as someone climbing a ladder. Climbing stairs, if one can put it that way …

Conrad said that to him recovery was a process:

Since spirituality has the ability to build resilience, it cannot and should not be overlooked.

It’s just, it’s almost like a pro … process. Yes, you get better and … day-by-day.

Stigma.  Stigma was found to be ingrained and pervasive. In her second interview, it became evident that Rachel experienced stigma, even if she did not name it as such:

Although these findings confirm similar findings from studies in the United States, the United Kingdom and Australia, the findings are valuable because they strengthen the already existing body of literature on the lived experience of recovery. Since many qualitative studies, such as the one in question, are done with only a few participants, the finding of similar results from different studies goes towards strengthening the overall results of studies investigating the lived experience of recovery in the field.

… I didn’t go to people anymore. I just stayed at my place, where I … If they see you coming to Stikland, then they think, all kinds of things they say to you. And I kept myself away from people.

Mary explained her non-disclosure at work, because of the possibility of stigma: But, I still, um, don’t tell my work doesn’t know I’m schizophrenia, because I don’t want to be discriminated or they know I have diabetes and rheumatoid, but I don’t want them to think that I’m, I am not normal, that I can’t do my job. So, I don’t disclose that, that I’m schizophrenia.

These comments by Mary indicate that other medical illness may not be as stigmatised as mental illness. The importance of the participants’ positive attitude and their belief in their own abilities.  The retention or rediscovery of the abilities of those challenged by mental illness was seen as a determining factor for recovery, since it once again (re)introduces a sense of agency. Upon being asked what helped her, Christine said, … I try and look at it positively, you know, that I’m, that I’m better and cured and, um it’s not gonna happen again [laughs], I’m not gonna have that relapse again. So, I try and stay positive and focused and just, um, take it one day at a time and in, in that sense.

The meaning of recovery In addition to mentioning factors associated with recovery, participants discussed the meaning of recovery for themselves.

Limitations Since the study was conducted at one specific research unit and at a particular point in time, the examination of changes in how recovery is understood by the participants over time (Windell, Norman, & Malla, 2012) is out of the question. Furthermore, it may also be that the experiences of the participants do not represent those of the greater population of persons recovering from a first psychotic episode in schizophrenia. Fortunately, these objectives were never the purpose of this study. The purpose was rather to explore the individual experiences of participants to understand these better and add to the already existing body of studies conducted in the field. And, this was achieved. Another limitation of this study is the way in which some questions were formulated. It caused the participants to misinterpret what the researcher meant. In particular, the question about what did not help the participants caused misinterpretation. Almost all of the participants felt the need to voice their gratitude towards the doctors and nurses at the research unit. A.D.W. had the sense that they were fearful that she would come to the conclusion that they thought the study at the research unit was not helpful. A fair criticism of this study may be that the participants were all, to a greater or lesser degree, doing well in recovery from their first psychotic episode. In this

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de Wet et al. respect, the study is not inclusive in that it does not represent a broader spectrum of both positive outcomes and outcomes that are less so. Although this limits the generalisability of the study results, what can be gained from the focus on the experiences of so-called successful mental health consumers is the identification and examination of those dimensions of recovery that aided these participants and to use them to help those who are struggling or do not have access to such strategies to recover.

Recommendations Support both to people with schizophrenia and by them to others was identified in this study as one of the greatest contributors to the recovery of persons faced with schizophrenia. Such support may come from a whole host of sources and could be offered by recovering persons to a wide variety of others. In this study, participants identified family members, work colleagues, nursing staff and friends, among others, as providing support. In turn, participants offered varying degrees of support to family, significant others, clients, fellow patients and even strangers, which impacted positively on their own recovery. South Africa falls within the ambit of a low- and middle-income country possessing limited resources, of which mental healthcare funding is one. The WHO (2013) states that the care for persons with schizophrenia can take place at community level by, for instance, designing interventions aimed at strengthening families to provide support to their members with schizophrenia. Although few such interventions have been implemented in South Africa, it is encouraging to note that Asmal, Mall, Emsley, Chiliza, and Swartz (2014) have qualitatively examined the implementation of a group family intervention with persons who have schizophrenia and their relatives in the Western Cape in South Africa, citing family support and education as methods that have been associated with, among others, lower relapse rates. Despite logistical barriers (Asmal et al., 2014), the cost of such interventions could be considerably less than the cost linked to formal mental healthcare and be in line with the proposed provincial governmental policy in the Western Cape of South Africa (Western Cape Government, Department of Health, 2013). It follows, that such interventions, if they were to be implemented, could then possibly have a considerable impact on the cost burden of the disease in South Africa. In the light of this, the recommendation is that interventions should be directed at developing strong, supportive families for those faced with this potentially devastating disease, and support is given to current and proposed interventions with such aims. This is only one example of a host of such support interventions that could be implemented. The involvement of persons in recovery (often referred to in such contexts as service-users in the literature) in informing design and leading recovery

interventions is recommended as another example of how support can be a constructive factor in recovery. The results regarding the impact of spirituality on recovery in this study were not explored in depth. However, it was clear from the participants’ comments on the role of spirituality in their recovery that it could potentially be a very important resource for persons recovering from mental illness. It is suggested that the role of spirituality in recovery from mental illness be further explored in future studies. It was noted in this study that support, in its various forms mentioned earlier, may have contributed to an increased sense of agency for the participants by allowing the opportunity to retain or rediscover abilities. In addition, allowing participants to talk about their experiences in the interviews and being heard by A.D.W. in the process (which can be seen as a form or support) aided the participants by their own account. This is in line with what Geekie et al. (2012) state, namely, that, regardless of the content of the story, the telling of the story provides the narrator with a sense of agency and ‘with the opportunity to renegotiate the meaning, sequence and connection between past and present life events and accept[ing] themselves and their personal histories’ (p. 9). In the light of the results in this regard and against the backdrop of the literature, it is suggested that the narrative element in interaction in research or clinical settings with a person recovering from mental illness is emphasised and acknowledged for the important, yet often overlooked, role it plays in the person’s recovery process.

Conclusion Recovery is a dynamic, evolving and unique process within the life of each person faced with its challenges. Recovery is not an end in itself. It is not an achievement. Rather, it is a way of living and a constant choice that persons in pursuit of it have to make. The participants in the study each found their particular way of living, which creates the space and opportunity for them to be who they are, completely. The particular challenges that they face every day are huge and disruptive, but at the same time challenges, in all their forms and guises, are universal to all human beings. And, the universalness of challenges is part of the wisdom gained from this study. The result of such a realisation is that it is never a matter of us and them. It is necessary for everyone to acknowledge, embrace and celebrate it. Acknowledgements The authors appreciate the support and help of the members of the Schizophrenia Research Unit at Stikland Hospital in the Western Cape, South Africa: Sr I Mbanga and Sr R Smit. However, the most important persons to receive our thanks are the participants, without whom this study would not have been possible.

32 Funding This work is based on research supported in part Subcommittee A of Stellenbosch University, and by the National Research Foundation of South Africa (grant specific unique reference number (UID) 85423). The grant holder acknowledges that opinions, findings and conclusions or recommendations expressed in any publication generated by the research are those of the author(s), and that the Stellenbosch University Subcommittee A and the NRF accept no liability whatsoever in this regard.

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International Journal of Social Psychiatry 61(1) Cohen, A., Patel, V., Thara, R., & Gureje, O. (2008). Questioning an axiom: Better prognosis for schizophrenia in the developing world? Schizophrenia Bulletin, 34, 229–244. Davidson, L. (2003). Living outside of mental illness: Qualitative studies of recovery in schizophrenia. New York: New York University Press. Geekie, J., Randal, P., Lampshire, D., & Read, J. (Eds.). (2012). Experiencing psychosis: Personal and professional perspectives. Hove, UK: Routledge. Smith, J. A., Flowers, P., & Larkin, P. (2009). Interpretative phenomenological analysis: Theory, method and research. London, England: SAGE. Smith, J. A., & Osborn, M. (2004). Interpretative phenomenological analysis. In G. M. Breakwell (Ed.), Doing social psychology research (pp. 229–254). London, England: British Psychological Association and Blackwell. Western Cape Government, Department of Health. (2013). Healthcare 2030: The road to wellness (draft). Retrieved from http://www.westerncape.gov.za/text/2013/October/ health-care-2030–;9-oct-2013.pdf Windell, D., Norman, R., & Malla, A. K. (2012). The personal meaning of recovery among individuals treated for a first episode of psychosis. Psychiatric Services, 63, 548–553. World Health Organization (WHO). (2013). Mental health disorders management: Schizophrenia. Retrieved from http:// www.who.int/mental_health/management/schizophrenia/ en/

Hearing their voices: The lived experience of recovery from first-episode psychosis in schizophrenia in South Africa.

Recovery was previously regarded as a somewhat unattainable goal, and the subjective experience was de-emphasised. Lately, the person and his or her e...
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