Schizophrenia Over Time: Experiences Living with the Illness

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Social Work in Mental Health

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The lived experience of schizophrenia: A systematic review and meta-synthesis

Joseph Walsh, Rebecca Hochbrueckner, Jacqueline Corcoran & Rachel Spence

To cite this article: Joseph Walsh, Rebecca Hochbrueckner, Jacqueline Corcoran & Rachel Spence (2016) The lived experience of schizophrenia: A systematic review and meta-synthesis, Social Work in Mental Health, 14:6, 607-624, DOI: 10.1080/15332985.2015.1100153

To link to this article: https://doi.org/10.1080/15332985.2015.1100153

Accepted author version posted online: 31 Dec 2015. Published online: 05 May 2016.

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The lived experience of schizophrenia: A systematic review and meta-synthesis

Joseph Walsh, PhD, Rebecca Hochbrueckner, MPT, Jacqueline Corcoran, PhD, and Rachel Spence, BA

School of Social Work, Virginia Commonwealth University, Richmond, Virginia, USA

ABSTRACT Schizophrenia is a serious mental illness characterized by abnormal patterns of thought and perception. What has been studied less often is the personal experience of having schizo- phrenia. Qualitative studies have been illuminating in this regard, and the purpose of this meta-synthesis is to determine the themes that can be identified across those studies. The inclusion criteria required that the studies employed qualita- tive methods, that participants had been diagnosed with schi- zophrenia, and the studies focused on their “lived experience.” After applying search criteria to databases, 27 studies were included in the meta-synthesis. Five major themes were iden- tified in the results, including: (1) the experience of symptoms; (2) the process of acceptance; (3) personal relationships; (4) treatment experiences; and (5) spiritual practices and faith. Implications of these results are explored. Schizophrenia Over Time: Experiences Living with the Illness

KEYWORDS Schizophrenia; qualitative research; meta-synthesis

Schizophrenia is a mental disorder characterized by abnormal patterns of thought and perception. It includes two types of symptoms (American Psycholagical Association [APA], 2013). Positive symptoms represent exag- gerations of normal behavior, and include hallucinations, delusions, disorga- nized thought processes, and tendencies toward agitation. The negative symptoms of schizophrenia represent the diminution of what would be considered normal behavior, and include flat affect (the absence of expres- sion), social withdrawal, non-communication, anhedonia (blandness), pas- sivity, and ambivalence in decision making. Complete and permanent remission in schizophrenia is relatively uncommon. A person with the dis- order may experience a chronic course, with symptoms being more or less florid but never really disappearing, or one in which periods of psychosis are interspersed with periods of remission (van Os, Rutten, Bart, & Poulton, 2008). The average life span of persons with schizophrenia is variously reported as 16 to 22 years shorter than the national average in the United States due to lifestyle factors such as diet, physical health, and risks related to

CONTACT Jacqueline Corcoran, PhD jcorcora@vcu.edu School of Social Work, Virginia Commonwealth University, 907 Floyd Avenue, Richmond, VA 23284.

SOCIAL WORK IN MENTAL HEALTH 2016, VOL. 14, NO. 6, 607–624 http://dx.doi.org/10.1080/15332985.2015.1100153

© 2016 Taylor & Francis

 

 

poverty (Cohen, 2012). Suicide is the leading cause of premature death in schizophrenia, as 20–40% of persons attempt suicide at some point in their lives and 5–10% succeed (Johnson, Gooding, & Tarrier, 2008).

The nature of schizophrenia has been a major research topic in the health sciences for more than a century, but most studies have focused on its causes and treatment. What has been studied less often is the personal experience of having schizophrenia. Qualitative studies have been illuminating in this regard, and the purpose of this meta-synthesis is to determine the themes that can be identified across those studies. Schizophrenia Over Time: Experiences Living with the Illness

Method

Inclusion criteria and search

The inclusion criteria required that the studies employed qualitative meth- ods, the participants had been diagnosed with schizophrenia, and the studies focused on the “lived experience,” in other words, what it is like to live with a diagnosis of schizophrenia, rather than honing in on specific aspects of the disorder. A database search was completed by a PhD-level research assistant at Virginia Commonwealth University. The search was based on terms and appropriate Boolean operatives provided by a reference librarian that included the following keywords: personal reflection, lived experience, quali- tative, phenomenology, schizophrenia, schizoaffective disorders, schizotypal, schizoid personality disorder, schizophreniform, personal experience, and psy- chotic disorder. Searches were conducted using the following databases: CINAHL, Social Work Abstracts, Psychology & Behavioral Sciences, PsycARTICLES, PsycINFO, PsycEXTRA, Academic Search Complete, and Dissertations ProQuest. Search criteria did not specify a beginning date and extended to May, 2014. The initial searches produced a list of 4,298 potential studies.

The three-step process of study selection developed by Meade and Richardson (1997) was used to narrow the results of the search based first on title alone, then including the abstract, and finally the entire text of the study. The research assistant submitted the studies he believed fit the inclu- sion criteria to the principal investigator, who made final determinations. Primary reasons for excluding studies were that they focused narrowly on a specific aspect of schizophrenia, focused on families rather than the indivi- duals with the disorder, or were quantitative as opposed to qualitative (mixed method designs were included as long as there was qualitative data that was analyzed). Through this process, the original list of articles was narrowed to 43 studies, of which 27 met all inclusion criteria. Schizophrenia Over Time: Experiences Living with the Illness

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Table 1. Primary studies: methodological details and themes. Study Design/theory Sample Themes

Anderson (2011) Interviews Interpretive phenomenology

N = 5 African American males

Experience of symptoms Process of acceptance

Baier (1995) Interviews Naturalistic inquiry

N = 26 18 males, 8 females 22 Caucasians, 4 African Americans

Experience of symptoms Process of acceptance Personal relationships Treatment/medication

Baker (1996) Interviews Interpretative interactionism

N = 15 10 males, 5 females Canadian study

Experience of symptoms Personal relationships Treatment/provider interaction

Eklund et al. (2012) Interviews Content analysis

N = 10 5 males, 5 females Swedish study

Experience of symptoms Process of acceptance Personal relationships

Evenson et al. (2008) Interviews Interpretative phenomenology

N = 10 Biological fathers with schizophrenia All Caucasian

Experience of symptoms Process of acceptance Personal relationships Treatment/medication

Fernandes (2009) Interviews Psychodynamic

N = 4 2 males, 2 females Ethnicity not noted

Experience of symptoms Process of acceptance Personal relationships Treatment/provider interactions

Flanagan et al. (2012) Interviews Interpretive phenomenology

N = 17 71% female 77% African American, 17% White, 6% Native American

Experience of symptoms Personal relationships Treatment/provider interactions

Forchuk et al. (2003) Interviews Leninger’s phases of qualitative analysis

N = 10 7 males, 3 females All Caucasian/Canadian

Experience of symptoms Process of acceptance Personal relationships Treatment/provider interactions

Medication

Gee, Pearce, and Jackson (2003)

Interviews Grounded theory

N = 6 3 males, 3 females Ethnicity not noted

Experience of symptoms Process of acceptance Personal relationships Treatment/medication

Gould et al. (2005) Focus groups Constant comparative method

N = 4 All male Ethnicity not noted

Experience of symptoms Process of acceptance Personal relationships

Humberstone (2002) Interviews Grounded theory

N = 13 10 males, 3 females New Zealand study

Experience of symptoms Process of acceptance Personal relationships Faith/spirituality Treatment/provider interactions

Medication

Jarosinski (2006) Interviews Herdeggaroam hermeneutic approach

N = 12 5 males, 7 females 6 African Americans, 6 Caucasians

Experience of symptoms Process of acceptance

(Continued)

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Table 1. (Continued).

Study Design/theory Sample Themes

Liu et al. (2012) Interviews Comparative analysis

N = 16 5 males, 11 females Residents of Shanghai

Experience of symptoms Personal relationships Treatment/provider interactions

McCann and Clark (2004) Interviews Descriptive phenomenology

N = 9 5 males, 4 females Australian study

Experience of symptoms Personal relationships Faith/spirituality Treatment/medication

Ng et al. (2008) Focus group Grounded theory

N = 8 4 males, 4 females Chinese

Experience of symptoms Process of acceptance Personal relationships Treatment/provider interactions

Medication

Phillips (2008) Interviews Grounded theory

N = 8 6 males, 2 females 4 Caucasians, 1 Jamaican, 3 African Americans

Process of acceptance Personal relationships Faith/spirituality Treatment/provider

interactions Medications

Phripp (1995) Interviews Comparative analysis

N = 3 1 male, 2 females Canadian study

Experience of symptoms Process of acceptance Personal relationships Treatment/medication

Powell (1998) Interviews Interpretive interactionist

N = 33 18 males, 15 females Caucasian 51%, African American 27%, Hispanic 22%

Experience of symptoms Process of acceptance Personal relationships Treatment/provider interactions

Medication

Roe et al. (2004) Interviews Open-coding case analysis

N = 41 25 males, 18 females Ethnicity not noted

Experience of symptoms Process of acceptance Faith/spirituality

Sanseeha, Chantawan, Sethabouppha, Disayavanish, and Turale (2009)

Interviews, reflective journaling, observation

Heidegger’s hermeneutic phenomenology

N = 18 individuals with schizophrenia

N = 12 family members Thai study, all were Buddhists

Experience of symptoms Process of acceptance Personal relationships Faith/spirituality Treatment/medication

Shepherd, Depp, Harris, Palinkas, and Jeste (2012)

Interviews Grounded theory

N = 32 Approx. 41% females Ethnicity not noted

Process of acceptance Personal relationships

Sung and Puskar (2006) Interviews Interpretive phenomenology

N = 21 13 males, 8 females Korean

Experience of symptoms Process of acceptance Personal relationships Treatment/medication

Suryani et al. (2013) Interviews Colaizzi’s (1973) phenomeno- logical approach

N = 13 6 males, 7 females Indonesian

Experience of symptoms Process of acceptance Personal relationships Treatment/provider interactions

(Continued)

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Data extraction

A table was developed to organize the relevant information based on meth- odologies, participant demographics, and results of each study (see Table 1). Data extraction was completed by two master’s-level research students and reviewed for accuracy by the principal investigator.

Data analysis

The studies were analyzed using the methodological framework provided by Noblit and Hare (1988) for meta-synthesis, which they refer to as meta- ethnography and is the oldest form of synthesizing qualitative research. The method involves seeing how studies are related, which involves identifying common themes across studies and checking or “translating” them against each other to ultimately create new third-order constructs (Ring, Ritchie, Mandava, & Jepson, 2011; Thomas & Harden, 2008). Initial themes were developed by a group of four trained research students and, through an iterative process with the primary investigator, involved discussion and review of tables and concepts, which yielded final themes and subthemes.

Results

After applying the selection criteria, a total of 27 studies published between 1992 and 2013 were included in our meta-synthesis, with a total of 408 participants, all with diagnoses of schizophrenia or schizoaffective disorder. About one third of the participants were women and two-thirds were men. Caucasians and African

Table 1. (Continued).

Study Design/theory Sample Themes

Tooth et al. (2003) Focus groups NUDIST program was used for analysis

N = 57 42 males, 15 females Australian study

Process of acceptance Personal relationships Faith/spirituality Treatment/provider interactions

Medication

Walton (1992, 2000) Interviews Heideggerian phenomenology

N = 10 7 males, 3 females Canadian study

Process of acceptance Personal relationships Faith/spirituality Treatment/provider interactions

Medication

Yennari (2011) Interviews Thematic analysis

N = 7 5 males, 2 females 4 African Americans, 3 Caucasians

Experience of symptoms Process of acceptance Personal relationships Faith/spirituality Treatment/provider interactions

Medication

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Americans were the most represented ethnicities in this sample, although four studies focused on specific ethnic groups, including Thai, Indonesian, Chinese, and Korean populations. A wide variation existed in the marital and parenting status of participants as well as age range, with most falling between 18 and 50 years. Some had college degrees but the majority had obtained a high school diploma or less. Participants were recruited most often using purposive and convenience sampling methods and were frequently identified through local mental health facilities. Most were receiving some kind of mental health services for their condition, in both inpatient and outpatient settings. Most studies used individual interviews but a few (3 out of 26) involved focus groups. A majority of the studies (65%) were conducted outside the United States, with 35% within the United States. Thirty-one percent were dissertations with the rest of the studies published in refereed journals. The most commonly utilized theories for the approach and analysis were interpretive phenomenology and grounded theory. Schizophrenia Over Time: Experiences Living with the Illness

Five major themes were identified in the results, including: (1) the experi- ence of symptoms; (2) acceptance processes; (3) personal relationships; (4) spiritual practices and faith; and (5) treatment experiences.

The experience of symptoms

The experience of symptoms was discussed in 22 of the 27 studies. Themes that emerged within the rubric of “symptoms” included the experience of hallucinations, disorientation, and the loss of a sense of self.

Hallucinations The onset of hallucinations, considered in 14 studies, was described as gradual by some and immediate by others (Fernandes, 2009). In general the experience of hallucinations was described as frightening, confusing, and exhausting (Flanagan et al., 2012; Forchuk, Jewell, Tweedell, & Steinnagel, 2003; Humberstone, 2002; Jarosinski, 2006; Yennari, 2011). The common experience of hearing voices was often associated with violence, negativity, and yelling (Forchuk et al., 2003; Humberstone, 2002; Walton, 2000). Participants in Suryani, Welch, and Cox’s (2013) study reported feeling the need to comply with orders given by the voices. One participant noted, “‘The voices seemed to command my brain. . . . In my mind I felt as if I was under their command” (p. 315). Not uncommonly, participants experienced the voices as coming from electronic media, such as television or radio (Baier, 1995). Participants noted the importance of gaining some level of control or understanding of the voices as an important step in learning to cope with schizophrenia (Roe, Chopra, & Rudnick, 2004).

Disorientation Disorientation, described as not knowing what was real or unreal, was noted in 14 of the studies (e.g., Anderson, 2011; Baier, 1995; Baker, 1996; Phripp,

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1995; Roe et al., 2004; Sung & Puskar, 2006). Experiences of hallucinations, both visual and auditory, as well as delusions, left individuals constantly questioning reality. Multiple studies noted that participants made use of reality testing (ways to evaluate one’s sensory impressions) to distinguish symptoms from reality (Anderson, 2011; Roe et al., 2004). A participant in Anderson’s study (2011), who expressed concern that others could read his mind, reportedly asked the researcher, his psychiatrist, his counselor, and his case manager if they could in fact hear his thoughts.

Another aspect of schizophrenia that leads to disorientation stems from difficulties with concentrating and problems with memory (Evenson, Rhodes, Feigenbaum, & Solly, 2008; Fernandes, 2009; Forchuk et al., 2003; Liu, Ma, & Zhao, 2012; Sung & Puskar, 2006). Participants described confusion and difficulty with remembering and tracking information (Fernandes, 2009). The combination of unpredictable symptoms, being out of touch with reality, and difficulty thinking and remembering work together to increase anxiety (Liu et al., 2012). As one participant noted, “‘For me, the future is unrealistic and unpredictable. The only thing I can do now is just to take care of my daily life” (Liu et al., 2012, p. 1711). Schizophrenia Over Time: Experiences Living with the Illness

Loss of sense of self Loss of sense of self was discussed in 12 of the 27 studies. In general, participants found that the symptoms of schizophrenia were so overwhelm- ing that they experienced a lost “sense of self” (Phripp, 1995, p. 30), defined as a loss of self-control or personal agency (Baker, 1996; Phripp, 1995), and a loss of identity (Fernandes, 2009; Humberstone, 2002; Jarosinski, 2006; Phripp, 1995). Jarosinski described participants as wondering, “Are they who they are?” (2006, p. ix). Participants in Fernandes’ (2009) study expressed feeling fragmented rather than whole. Jarosinski’s (2006) partici- pants reported on the difficulties of finding a sense of self separate from the hallucinations, which was consistent with Yennari’s (2011) study, finding that participants struggled to find a sense of identity. A young man from one study explained it this way:

There was nowhere I could go for—for a sense of privacy because I felt that everyone was understanding everything that I was thinking and it didn’t matter where I was. And uh just the sense of being absolutely out of control and having absolutely no control in your life. No control for your thoughts, no control of your actions no control of anything. Just being completely manipulated by exterior forces. No sense of self. (Phripp, 1995, p. 144)

Process of acceptance

The second major theme, the process of acceptance, was covered in 22 studies. This theme considers the progress that individuals make in living

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with and managing schizophrenia. In general, participants did not feel that “recovery” was an appropriate description of their reality (Phripp, 1995; Tooth, Kalyanasundaram, Glover, & Momenzadah, 2003). Due to the long- term nature of schizophrenia, recovery was seen as something that was never complete but an ongoing process better described as coping. As one partici- pant noted: “It’s like a brand new car and a repaired car that was crashed, the prices are very different. The chassis was all bent and you straightened it up, but it is still different” (Ng et al., 2008, p. 125).

The subthemes considered in this section include feelings of shame and loss, regaining a sense of self, acceptance (as a continuum), and reengagement.

Shame and loss The subtheme of shame and loss was noted in 13 studies. As symptoms appeared and individuals first became aware of their diagnosis, their feelings of shame and loss could be overwhelming. Many study participants reported feeling like failures (Baker, 1996; Evenson et al., 2008; Sung & Puskar, 2006), with a sense of shame at being diagnosed with schizophrenia and not being able to maintain control of their lives (Evenson et al., 2008; Fernandes, 2009; Sanseeha, Chantawan, Sethabouppha, Disayavanish, & Turale, 2009; Suryani et al., 2013). Feelings of shame were frequently connected with internalized stigma (Flanagan et al., 2012) and negative self-thoughts (Forchuk et al., 2003). Participants described feelings of low self-confidence and poor self- image (Liu et al., 2012; McCann & Clark, 2004).

These negative feelings were associated with a sense of loss. Participants expressed that they had lost the chance to have a normal life (Baker, 1996; Gould, DeSouza, & Rebeiro-Gruhl, 2005), lost relationships (Baker, 1996), and lost tangible resources, such as jobs and homes (Humberstone, 2002). One participant stated this simply as, “‘I remember when I was normal’” (Gould et al., 2005, p. 469), which, in turn, led to feelings of isolation, hopelessness, and depression (Fernandes, 2009; Forchuk et al., 2003; Liu et al., 2012; Ng et al., 2008; Sung & Puskar, 2006). For some, this led to thoughts of suicide, “‘I feel like a suicide. I feel like taking a knife and putting it right through my chest’” (Baker, 1996, p. 27). As the symptoms they experienced were unpredictable and difficult to understand, participants were also filled with worry, anxiety, and fear for the future (Baker, 1996; Evenson et al., 2008; Fernandes, 2009). Confusing, overwhelming, and erratic symptoms left the individuals in these studies feeling shame and loss. Schizophrenia Over Time: Experiences Living with the Illness

Regaining a sense of self This subtheme was discussed in 13 studies. Participants reported regaining a sense of self as they began to feel some level of control over their symptoms (Eklund, Hermansson, & Håkansson, 2012; Phripp, 1995; Roe et al., 2004). As one person described, “‘I feel like a human being again. I’ve got my emotions back. I’ve got my

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long-term memory. I’ve got my short-term memory. I’m just coping and doing fine’” (Forchuk et al., 2003, p. 147). This control enabled them to feel safer and to move forward in other areas such as reengagement (Eklund et al., 2012). Participants noted that gaining this control was hard work and required determi- nation (Fernandes, 2009; Tooth et al., 2003). The new sense of identity that formed tended to include the diagnosis of schizophrenia, which was incorporated and accepted as one part of the self (Baier, 1995; Phripp, 1995; Sung & Puskar, 2006). Some participants felt pride in their new sense of self and considered themselves to be survivors. One participant stated, “‘You might notice that I’m very individual. I know that. I, myself, it’s up to me, this person behind the face here. I know it’s a bit fleshy, a bit funny, but that person that I am behind this face is responsible for all kinds of freedom’” (Humberstone, 2002, p. 370).

Acceptance (as a continuum) The participants in these studies fell along a continuum of acceptance, that was particularly considered in nine studies. Some refused to accept their diagnosis or identify as mentally ill (Liu et al., 2012; Sung & Puskar, 2006). Others accepted the diagnosis and were able to incorporate it into their identity without being defined by it (Yennari, 2011).

Acceptance had more meanings beyond acceptance of the diagnosis, including coming to terms with the long-term nature of the disorder (Baier, 1995), the many losses inherent in the diagnosis, and acknowledging the need for support (Gould et al., 2005). Psychosocial support and psychoe- ducation sometimes helped individuals gain a level of acceptance (Phripp, 1995; Tooth et al., 2003), which generally enabled them to cope better and to move on with their lives, as this participant described: “But ah, so I think that I’ve come a long way in dealing with the schizophrenia so that I know it’s not a healthy thing to have but it’s not life threatening and it’s not um, it doesn’t have to control your life” (Phripp, 1995, p. 84)

Reengagement Reengagement was specifically considered in 13 studies. Participants who were coping well with their schizophrenia showed signs of reengagement, most commonly involving social interactions (Baier, 1995; Phripp, 1995; Sung & Puskar, 2006; Tooth et al., 2003) but also in setting goals (Eklund et al., 2012; Jarosinski, 2006), such as having a job and living independently (Forchuk et al., 2003; Ng et al., 2008; Phillips, 2008). One participant, a young man, commented, “‘Yeah, I want to get out of the system. . . . I’d get me a job, my own apartment, and a car and maybe even get married. . . . I’m gonna walk out that door. I’m getting discharged soon’” (Phillips, 2008, p. 60).

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Personal relationships

The third major theme, personal relationships, dominated the narratives in 23 studies. Participants consistently expressed the belief that their ability to develop and maintain interpersonal relationships was profoundly affected by the disorder. Stigma and discrimination from others, as well as the necessity of support, were also indicated. Schizophrenia Over Time: Experiences Living with the Illness

Deterioration of existing relationships Deterioration of relationships was discussed in 10 studies. Individuals expressed that they had lost relationships, both by being rejected due to their symptoms and due to their own emotional disengagement and resent- ment (Baker, 1996; Evenson et al., 2008; McCann & Clark, 2004; Suryani et al., 2013; Yennari, 2011). The effect of the disorder on one father’s relationship with his children is apparent in the following quote: “‘Well because you alienated them from your mind . . . they’re my children but they’re not my children . . . it’s a horrible feeling’” (Evenson et al., 2008, p. 634). Some expressed anger and resentment towards family members who they believed had betrayed them by participating in their involuntary hospi- talizations (Baker, 1996).

When relationships with friends and family members were maintained, they were often described as being limited or superficial (Baker, 1996; Forchuk et al., 2003; Humberstone, 2002; Liu et al., 2012; Shepherd et al., 2012; Sung & Puskar, 2006). Participants often described feelings of lone- liness and isolation as a result of this deterioration in relationships. One woman described this as an inherent feature of schizophrenia, noting: “’That’s the thing about schizophrenia, it leaves you alone emotionally and alone physically. . . . I got really lonely. People my own age left me alone . . . the trouble with schizophrenia was loneliness’” (Humberstone, 2002, p. 7).

Difficulty establishing new relationships Difficulty relating to others, referenced in 13 studies, often prevented indi- viduals from establishing relationships that mattered to them (Baker, 1996; Gee, Pearce, & Jackson, 2003; McCann & Clark, 2004; Sung & Puskar, 2006). Difficulty connecting was related to paranoia, anxiety, fear regarding other people’s motivations, and fear of being considered abnormal or psychotic (Baker, 1996; Liu et al., 2012; Suryani et al., 2013; Walton, 1992, 2000). As one woman noted, “You can’t ever feel comfortable. I’m always nervous and tense with people” (Baker, 1996, p. 26). As a result, some individuals came to accept the idea of being alone, or limited their relationships to others with the diagnosis (Humberstone, 2002; Ng et al., 2008; Phillips, 2008). Some reported that they were eventually able to establish relationships with others, but only by utilizing a “false self” and hiding their true feelings and emotions

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(Fernandes, 2009; Yennari, 2011). As one man explained, “[Regarding rela- tionships] suppose people go out with you and are willing to be your friends. You don’t really tell them too much. You’d be afraid of how they might look at you after you tell them” (Ng et al., 2008, p. 125). Others reported that the sense of discomfort never truly disappeared, but eased somewhat as they made progress toward recovery (Forchuk et al., 2003).

Stigma and discrimination Individuals spoke of facing alienation and stigma from their families, friends, and their communities in 12 studies, based on both their diagnosis and actual symp- toms (Gee et al., 2003; Humberstone, 2002; Jarosinki, 2006; Powell, 1998; Tooth et al., 2003; Yennari, 2011). Many expressed that this stigma led to feelings of shame, isolation, rejection, and distrust, and was a major contributor to voluntary isolation (Flanagan et al., 2012; Liu et al., 2012; Sanseeha et al., 2009). When discussing even brief encounters with the outside world, themes of paranoia often permeated the narrative: “But I remember I used to walk around, and I’d know that these people were looking at me. I used to get really paranoid, and they were all dressed in black, and I thought . . . that’s why I used to freak out so much, because I used to think someone was after me” (Walton, 2000, p. 3). Schizophrenia Over Time: Experiences Living with the Illness

Many discussed the ways in which discrimination led to major consequences, such as difficulty finding housing. As a result, participants often concealed their diagnosis (McCann & Clark, 2004; Walton, 1992, 2000). While some individuals expressed a sense of injustice regarding being treated or judged negatively, many expressed the belief that these experiences were an inevitable part of living with the diagnosis of schizophrenia (Walton, 1992, 2000).

The importance of social support in coping The final subtheme under relationships, noted in 16 studies, was the importance of social support in coping with the illness. Individuals described depending on others for basic survival, including necessities such as food, clothing, and hous- ing (Baker, 1996; Walton, 1992, 2000). Positive relationships enabled them to cope with their illness and make progress in recovery (Baier, 1995; Evenson et al., 2008; Forchuk et al., 2003; Humberstone, 2002; Liu et al., 2012; Ng et al., 2008; Phillips, 2008; Sanseeha et al., 2009; Sung & Puskar, 2006; Tooth et al., 2003; Walton, 1992, 2000). One individual noted, “I believe that friends are very important. Don’t have to keep talking about your illness. Just hanging out and interacting with friends is quite good” (Ng et al., 2008, p. 126). Many discussed the ways in which helping others suffering from schizophrenia was beneficial to their own recovery (Eklund et al., 2012; McCann & Clark, 2004; Phillips, 2008). In order to develop these relationships, many sought out support groups so they could maintain contact with other persons with schizophrenia and maintain awareness regarding their illness (Phripp, 1995).

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Faith/spirituality

Another coping mechanism, in addition to social support, was the use of faith and spirituality (a theme present in 11 of 27 studies). Faith and spirituality were frequently listed as factors that helped participants cope with schizophrenia. Humberstone (2002) reported that participants found hope and meaning in God, as well as feeling that God was the only thing more powerful than their psychosis. Liu et al. (2012) noted the use of traditional Chinese spiritual meth- ods, and Sanseeha et al. (2009) described participants using Buddhist teachings, mindfulness, meditation, and prayer for coping. Roe et al. (2004) also noted the use of mindfulness for coping. Faith and spirituality in general were used to instill hope (Phillips, 2008) and as a means of support (Walton, 2000). One participant noted, “‘Well, I go to church and pray and all that. It made me more confident that I’ll go to heaven in a good way . . . it gives me reassurance . . . it makes me feel sure that I have a spot in heaven’” (Phillips, 2008, p. 49). Participants found that faith and spirituality were tools they could use to transcend the daily challenges of coping with schizophrenia. Schizophrenia Over Time: Experiences Living with the Illness

Treatment

Participant views on treatment, our fourth major theme, were discussed in 19 studies, with two subthemes emerging of contact with the mental health system and medication.

Interactions with providers This subtheme was present in 12 studies, falling into two categories: issues of control and negative contact with staff. Many individuals expressed concern that their illness had caused them to lose control over both their lives and their behaviors (Baker, 1996; Forchuk et al., 2003; Suryani et al., 2013). Many who were interviewed within an inpatient setting had fears related to being controlled by others, which had been exacerbated by non-voluntary hospitalizations and being forced to take medications (Baier, 1995; Forchuk et al., 2003; Humberstone, 2002; Liu et al., 2012; Phillips, 2008; Yennari, 2011). One man encapsulated this feeling of helplessness regarding treatment options by noting, “‘I was put on various drugs. I don’t know if I can remember them all. . . . Then I was told that I wasn’t allowed to leave the hospital unless I agreed to six months of injections outside the hospital. I was never all right there’” (Baker, 1996, p. 29). Some reported they were not well informed about their illness by doctors and staff, and, as a result, felt subject to the will of seemingly arbitrary decisions related to policies and treatment methods (Ng et al., 2008). Many expressed frustration at not being consulted regarding treatment decisions (Baker, 1996; Forchuk et al., 2003; Liu et al., 2012; Phillips, 2008). This lack of knowledge regarding their illness, combined with a lack of agency and control over

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decisions related to their health, often resulted in fear, discomfort, and disem- powerment (Powell, 1998; Walton, 1992, 2000).

The second category under encounters with the mental health system was negative contact with staff. Many individuals expressed the belief that provi- ders did not fully appreciate what it was like to experience a mental illness, and, consequently, failed to understand the impact of treatment decisions on clients’ lives (Forchuk et al., 2003; Liu et al., 2012; Walton, 1992, 2000). Some complained about staff members who were not well informed about schizo- phrenia and invalidated their psychotic experiences (Forchuk et al., 2003; Powell, 1998; Yennari, 2011). Others complained that staff members treated them like children (Forchuk et al., 2003), which, at times, resulted in a desire to fight the system. As one woman noted, “She [nurse] never really lets go, you know, she sort of always treats you like a patient or something like that and you just, you want to rebel, or that’s how I felt” (Walton, 2000, p. 80). Many respondents believed that staff did not always know what was best for them, and some expressed doubt that providers even had their best interest in mind (Baker, 1996; Fernandes, 2009; Liu et al., 2012; Ng et al., 2008; Tooth et al., 2003; Walton, 1992, 2000). As a result, some avoided communication with staff, “I keep my mouth shut. . . . I want to keep it a short stay” (Forchuk et al., 2003, p. 148). Even when some trust was developed, many emphasized that their relationships with staff continued to be largely superficial, “I know what the doctors are thinking about. They just take me as a patient. I mean, they just want to treat me like a client” (Liu et al., 2012, p. 1712). Schizophrenia Over Time: Experiences Living with the Illness

Medications The sub-theme of medication was present in 17 studies and divided into two categories of acceptance of medications and adverse effects. While many were resistant to medications at first, a large number of respondents acknowledged their necessity (Humberstone, 2002; Liu et al., 2012; Sanseeha et al., 2009; Sung & Puskar, 2006; Walton, 1992, 2000). Some spoke of the beneficial aspects of medications in managing their symptoms, and even seemed to accept the idea of medication as a long-term solution (Evenson et al., 2008; Phillips, 2008). One man stated, “‘I’m hoping the medication keeps working for the rest of my life’” (Forchuk et al., 2003, p. 146). Even for those who were unhappy with their medications, many expressed a willingness and desire to try new medications in hopes they would find something that would work (Forchuk et al., 2003). However, even when medications were accepted, many individuals expressed the belief that they would not be completely “recovered” from their illness until they were able to be free of them (Liu et al., 2012; Ng et al., 2008).

The second category under medications involved side effects. Individuals described a variety of concerning side effects including lack of energy, weight gain, concentration and memory problems, excessive sleeping, and impaired

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ability to show emotions (Baier, 1995; Evenson et al., 2008; Fernandes, 2009; Forchuk et al., 2003; Gee et al., 2003; McCann & Clark, 2004; Phripp, 1995; Sung & Puskar, 2006; Tooth et al., 2003). The effect on memory was often particularly troubling, as one man noted: “. . . when I have those slips of memory, which are part of my illness, something major will get lost ” (Evenson et al., 2008, p. 635). Concern about over-medication was a frequent point of focus, as individuals were fearful that taking too many medications would negatively impact their ability to function normally (Forchuk et al., 2003). Opinions on the effectiveness of medications varied, as some described positive effects (symptom reduction), some described negative effects (anxiety, restlessness, etc.), and some noted no change (Forchuk et al., 2003). One man reported that when his side effects were at their worst, they were “sometimes worse than the actual illness” (Yennari, 2011, p. 102). When this was the case, side effects often resulted in noncom- pliance (Sung & Puskar, 2006; Yennari, 2011). Schizophrenia Over Time: Experiences Living with the Illness

Discussion

There were some limitations associated with this study. There were the usual problems inherent in meta-synthesis, such as reliance on secondary data and combining data from different methodologies, phenomenologies, and quality. Specific to these studies, many participants were interviewed in an inpatient setting and might differ in important ways from individuals seeking services from outpatient settings; therefore, perspectives shared in this meta-synthesis might not generalize to all people with schizophrenia. Still, this meta-synth- esis provides a rich, detailed portrait of individuals with schizophrenia and avoids reducing those persons to mere symptomology. Schizophrenia Over Time: Experiences Living with the Illness

The onset of the disorder brings great loss that extends from one’s own identity to an individual’s grasp of reality. Because the experience of schizo- phrenia happens internally there is much misunderstanding of the disorder. Individuals can have difficulty conveying what they are experiencing, which is problematic for relationships, in general, but is especially evident in interactions with health care providers where individuals with schizophrenia consistently feel disempowered and misunderstood. While nursing and hos- pital staff are equipped to provide appropriate medical interventions, pro- blems related to issues of trust and control suggest that poor therapeutic relationships can have a negative impact on recovery. Hewitt and Coffey (2005) conducted a meta-analysis of studies on the significance of the therapeutic relationship with persons who have schizophrenia and concluded that those who experience an empathic, positive, facilitative relationship have better outcomes. Professional development programs that aim to increase awareness of the relationship issues facing this population could help to combat their perceived stigma and prejudice. Schizophrenia Over Time: Experiences Living with the Illness

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Probably the largest loss that individuals with schizophrenia face, and the one most mentioned within the studies of this qualitative meta-synthesis, is that of social relationships. Relationships that were strong prior to the onset of this disorder are challenged by the strange and often frightening symp- toms experienced. The symptoms and diagnosis lead to stigma and discri- mination. These feelings are internalized by those who are diagnosed which leads to a vicious cycle of self-isolation. As these individuals attempt to repair existing relationships and develop new relationships, they feel the need to hide some or all of the truth concerning their symptoms/diagnosis, afraid of how others will view and react to them. The effects of stigma were borne out in a 27-nation quantitative study (Thornicroft, Brohan, Rose, Sartorius, & Leese, 2009). Negative discrimination was experienced by 47% of study participants in making or keeping friends, by 43% from family members, by 29% in finding a job, by 29% in keeping a job, and by 27% when pursuing intimate relationships. Almost three-quarters (72%) of respondents felt the need to conceal their diagnosis. Schizophrenia Over Time: Experiences Living with the Illness

The importance of social relationships and the need for social support cannot be overemphasized. Strong, supportive relationships help individuals struggling with schizophrenia to cope and heal and even to meet basic necessities such as finding a job and housing. Participants in the meta- synthesis spoke about the need for social support, even though they tended to withdraw from others. Practitoners should understand that a moderate amount of interaction with significant others is optimal (Harley, Boardman, & Craig, 2012). They respond favorably to attitudes of acceptance, reasonable expectations, opportunities to develop social and vocational skills, and a relatively small number, but broad range, of social supports. These may include family members, friends, neighbors, work peers, school peers, infor- mal community relations, and perhaps members of shared religious groups and organizations (Gunnmo & Bergman, 2011).

The process of acceptance of the disorder should be a topic explored with people with schizophrenia to give them hope. They begin to accept their diagnosis, the long-term nature of the disorder, and their continued need for support. Many of the individuals in these studies turned to faith and spiri- tuality as a way to transcend their struggle with the disorder. As individuals form a new identity that includes schizophrenia as only one part of them- selves rather than as what defines them, they are able to move forward with their lives. They begin to set goals and make plans for the future. This type of healing requires a level of control over their symptoms, a thorough under- standing of their disorder, almost always the continued use of medications, and a strong and supportive social network. Schizophrenia Over Time: Experiences Living with the Illness

Psychotropic medication is, of course, a primary intervention modality for persons with schizophrenia, and there is approximately a 66% chance that a person will respond positively to an antipsychotic medication (Stahl, 2013). A

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systematic review of 65 controlled trials has affirmed that all of the anti- psychotic drugs are effective in controlling the resurgence of symptoms in persons with schizophrenia, even though they tend to produce adverse effects of movement disorders, sedation, and weight gain (Leucht et al., 2012). Participants in the study worried about side effects and the number of medications they were on. Medications tend to demonstrate variable adverse effects with regard to extrapyramidal symptoms, anticholinergic effects, weight gain, insomnia, headache, and increased heart rate (Komossa et al., 2010a, 2010b, 2011; Lobos et al., 2010). The findings of this meta-synthesis support the idea that many consumers have serious reservations about taking medications due to these adverse effects and should be encouraged to be open about their experiences so that an appropriate regimen of medications can be determined.

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