The International Journal of Psychosocial Rehabilitation

Making Meaning in a ‘Post-Institutional’ Age:
 Reflections on the Experience of (De) institutionalization


Marina Morrow, PhD
Assistant Professor
Faculty of Health Sciences, Simon Fraser University

Brenda Jamer, MSc
Researcher
Simon Fraser University


Citation:
Morrow M. & Jamer B.  (2008). Making Meaning in a ‘Post-Institutional’ Age: Reflections on the Experience of
(De) institutionalization.  International Journal of Psychosocial Rehabilitation. 12 (2),



Correspondence:
Marina Morrow, PhD
Faculty of Health Sciences
Simon Fraser University
East Academic Annex 2127 8888 University Drive
Burnaby, BC V5A 1S6 Canada
mmorrow@sfu.ca



Abstract
This article examines the narratives of people diagnosed with psychiatric illness about their experiences of institutionalization in the context of mental health reform and deinstitutionalization in British Columbia, Canada. Listening to the stories of psychiatric patients reveals that their experiences of care are not shaped so much by changing models of care but rather by the degree to which they experience the ability to have control over their lives.  The authors conclude that finding ways to listen to and interpret the experiences of people with mental illness is critically important in the context of mental health reforms and the development of new models of care.
Key words: deinstitutionalization, recovery, narratives of psychiatric survivors.


Objectives
The study and analysis of narratives of disease, disability and trauma is a burgeoning field with a range of disciplinary adherents (Frank, 1995; Raoul, Canam, Henderson & Paterson, 2007; Clarke, Febbraro, Hatzipantelis & Nelson, 2005, Appelton, 2000). In the foregoing discussion we contribute to this growing body of multidisciplinary literature through the examination of the narratives of people diagnosed with psychiatric illnesses who shared with us their experiences of institutionalization. We concur with narrative scholars that examining the life stories of stigmatized individuals can be a catalyst for advocacy and social change (Raoul, et al., 2007; Dossa, 2002; Rodrigues del Barrio, 2007).

The history of psychiatry and treatment of people with serious mental illness has been told as one of progress fueled by newer drugs and better models of care. Yet, this history of linear progress has also been contested  (Moran & Wright, 2006) making it imperative to give voice to the “objects” of psychiatry both for what this can reveal in terms of cultural meta-narratives and counter-narratives of psychiatry and for how these stories can inform improved social responses to people in mental distress.

Psychiatric discourse obscures contextual factors that may contribute to people’s experiences of distress, including the ways in which social determinants like gender, race, ethnicity, sexuality and poverty disadvantage psychiatric survivors. Further, within this paradigm there is little space for recognizing the experiences of people with mental illnesses. This is the case despite the fact Canadian policy documents emphasize the need for involving consumers in the planning of mental health care (BC Ministry of Health, 2002, Kirby, 2006, BC Ministry of Health, 1998).

In the current Canadian context, listening to the stories of people with experiences of long-term institutionalization is meant to contribute to the ongoing dialogue about how to foster recovery for people and to add to the body of literature that details the ways in which mental illness may be experienced differently by women and men in their various social locations.

The subject of our analysis is the experiences of individuals who have recently (since 2002) been transferred from British Columbia’s large provincial psychiatric institution (Riverview Psychiatric Hospital-RVH) to smaller tertiary and other supported living arrangements throughout BC.  Although psychiatric deinstitutionalization is a process which began in Europe and North America in the late 1950s and peaked in the 70s, the process was slowed, in part, because of the abysmal failure on the part of governments to provide community based supports to people leaving institutions, including adequate housing and sources of income.

These limitations, notwithstanding, deinstitutionalization held out the promise of a new approach to mental illness- one that would ‘return’ individuals to citizenship and independent lives. Deinstitutionalization in the Canadian context has continued to unfold but with new resources and new models of care in place. In BC individuals and financial resources are now transferred from RVH to a variety of levels of housing and care across the province.

In this shift, custodial care models are being replaced with psycho-social rehabilitation models of care (PSR).  These “new” models of care have been lauded by the government, policy makers and those overseeing and implementing the changes as ‘visionary’ (Interior Health, 2006; BC Mental Health and Addictions Services, 2007). Indeed, preliminary findings from a tracking study of patients suggest that individuals’ quality of life has generally improved in the new facilities (Groden, Lesage, Ohana, Goldner, 2006). However, these findings are derived primarily from clinical data rather than from an understanding of the process and how it is experienced by patients.

Research which honours the voices and range of interests and abilities of people living with mental illness has been rare and provides an opportunity to reflect on current changes in care with the goal of further advancing recovery models which have at their centre the goal that people regain control over their life choices.

This paper draws on interviews with seventeen mental health care recipients (nine women and eight men) about their experiences of being transferred from RVH.  We show that attending to these experiences reveals a disjuncture between the views of the architects of care and those for whom the care is designed. Listening to the stories of psychiatric patients reveals that their experiences of care are not shaped so much by changing models of care and newer and more pleasing facilities but rather by the degree to which they experience the ability to have control over their lives. Thus, these stories contain important lessons about the unintended consequences of care and how care is taken up or experienced by people with mental illness (Rodrigues del Barrio, 2007).

In particular, the voices of people diagnosed with mental illness are often not taken into account because of the difficulty in making sense of their narratives which may be fragmented and non-linear (Clarke, et al., 2005). Here we provide an analytic frame for making sense of fragmentation in order to respond to the practical and political imperative of involving psychiatric survivor voices. Fragmentation in this instance, illuminates the nature of lived experiences, that is, the fragmentation of the lives of people with mental illness is reflected in how they talk about their lives (Appleton, 2000).

Methods
First person accounts of mental illness in the North American literature are common (Blackbridge 1996. 1997; Capponi, 2003; Millet 1990; Nana-Ama Danquah 1999) most often written during periods of wellness, these stories serve the purpose of providing insights into the experience of mental illness and in some cases stand as critiques of psychiatry and institutional care.

A further approach is that taken by people who have not been ‘psychiatrized’ but who analyze narratives of mental illness second hand (Schneider, 2007; Schneider, 2003; Rodriguez del Barrio, 2007; Clarke, et al., 2005). This work is varied in its focus, but for our purposes Rodriquez del Barrio’s (2007) project is most pertinent. Through the examination of one individual’s narrative of their experience of psychosis her intent is to discover the meaning that support systems take on in relation to the inner worlds of people and to illustrate how they are multifaceted and contradictory. In an effort to make sense of the narrative Rodriquez del Barrio (2007) contrasts chronological narrative discourse with ‘space discourse’ that prioritizes the use of metaphors and defies narrative logic (p. 139). 

The recognition that the narratives of people with mental illness do not always proceed in chronological story-telling fashion also inspired Clark, et al., (2005) to reexamine narratives about psychiatric survivors’ experiences of supportive housing that they had originally analyzed using a standard qualitative categorical framework (Nelson, Clarke, Febbraro & Hatzipantelis, 2005). These authors ‘trouble’ the use of categorical frameworks because of the ways in which the narratives of the people they spoke with defied easy classification. Specifically, they note that the chronology shared by their participants “was frequently circular and fragmented” which upset their assumptions that people will tell stories in a linear, rational and systematic fashion (Clarke, et al, 2005, p. 924).

Clarke et al., (2005) use the concept of ‘braided’ time to capture how in the stories of the psychiatric survivors they interviewed, “…the beginning, the middle, and the end are wound around and circle back onto one another the way that braided hair does” (p. 924).  Further, Clarke, et al., (2005) note that in their initial analysis they assumed that lives “are describable and explainable through certain common stages beginning with childhood, moving through adulthood and then after supportive housing” (p. 925) what they discovered instead, was that their participants’ had much more idiosyncratic ideas about connections between events. In the end Clarke, et al., (2005) discuss the possible uses of a poetic representation of social experience to better represent “…individuals’ experiences of human suffering, strengths and hope” (p. 928).

The work of these scholars resonates with our own experiences of interviewing people with psychiatric illness and with our struggle to give voice to our participants’ experiences while at the same time wanting those experiences to have utility with respect to informing mental health care. As such, in our analysis we adopt an analytic frame which appreciates the fragmentation of our participants’ narratives and sees emergent meaning in the ways in which people tell their stories as much as in what people say.

In what follows we present sections of the narratives of the individual’s we interviewed, where they spoke about their experiences of moving from RVH to their current care facility. Individuals reflected on their experience of the move and their current housing situation. The interview included questions about safety/security, privacy, meal preparation and household chores, relationships with family and friends, outside work or activities and community interactions. Each interview was conducted in person by a member of the research team  and participants were offered an honorarium for their participation. Interviews ranged in length from fifteen to sixty minutes. Data was organized into twenty one categories and eventually collapsed into four clusters: Internal States of Being, Experiencing the Move, Activities, and Relationships, which formed the foundation for the following analysis. In our work we understand gender and other social locations (class, race, ethnicity, culture and sexuality) to be critical to understanding individual experiences in a larger social context. Thus in our analysis we applied an intersectional framework when examining the transcripts (Cuádraz, Holguín, Uttal, 1999; Varcoe, Hankivsky, Morrow, 2007).

Background
Life in the Institution
In order to set the stage for a more in-depth discussion of the stories we gathered in the course of our research, we begin this section by painting a picture of what contemporary institutional care in new and newly renovated facilities in BC looks like. We provide this context, in part, to counter pervasive beliefs about institutional care that may no longer accurately reflect the reality of current care models.

Historical documentation in Canada about asylum care reveals that the experience of institutional care is complex and sometimes contradictory and that what has been missing are detailed accounts from the perspectives of patients themselves (Moran & Wright, 2006).

Prior to the deinstitutionalization movement of the 50s and 60s large psychiatric hospitals had mostly become warehouses for people with mental illness and worked primarily from a custodial model of care in which patients’ lives were subject to institutional routines and patients were given little control over decision making and goal setting.  Contemporarily, models of rehabilitative care continue to be experimented with and now most practitioners concur that large asylums are ill-suited to PSR models both because of the ways in which they are physically configured and because staff training may not be adequate. 

In BC, individuals leaving RVH are housed in an array of possible living situations. Most patients have been transferred to smaller tertiary units, existing nursing homes and/or other forms of supported living . Decisions about where people would be moved were based on a number of considerations but one of the primary ones was whether a move would bring people closer to their families .

The two facilities in which we conducted most of our interviews include a new tertiary care facility (Facility X) that houses up to 40 people. The design of the facility is meant to optimize patient and staff interaction and the open door policy means that residents can freely leave to activities in the community  and family and friends can visit easily. Each floor of this facility is set up in ‘pods’ centered around a kitchen facility, where residents have their own bedrooms are expected to take responsibility for meals and other household chores. Although few rehabilitative opportunities outside of learning to cope with basic daily activities exist in this facility, residents do have access to a garden program onsite where they are paid for their contributions.

The second facility (Facility Y) is a newly renovated 14 bed facility that has a lower level of staffing than facility X. In this facility individuals are meant to be self-sufficient in all of their activities of daily living. There are no onsite rehabilitative activities, although residents have access to an occupational therapist and to activities in the community.     

Managers of the facilities describe their model of care as PSR and emphasize that their care fosters autonomy and independence. Patients are encouraged to interact as much as possible with the surrounding community and to go outside of the institution for all services. Although these institutions provide standard, traditional psychiatric treatment (symptom management through psychotropic drugs) they do not use seclusion rooms or physical restraints. Staff and management emphasized that the care provided stands in stark contrast to the care model in RVH, which was described as custodial.

Findings
Internal States of Being

We begin the discussion of our findings with an excerpt from an interview with Tyler  which illustrates the fragmented nature of the stories we gathered and provides insight into how he experiences his illness: 


T: I just don’t want to slide. You know, like go down a hill. Once you’re all the way up at the top, don’t fall down
I: Ohh. Is that a little bit how sometimes it feels?
T: That’s how schizophrenia is. You go up there and then you fall back down. You’ve got to be careful.
I: Do you know what helps you from sliding back down?
T: I don’t know. Just being aware of your surroundings, watch out what people do to you, yeah. (Tyler)

This kind of awareness was also reflected in Quinn’s narrative where he expresses frustration about workers who were trying to engage him in rehabilitative activities:

Yeah. We’re in a different world. And it’s hard for us to…sometimes our worlds, they sort of come together. It peeves me even when, I’ll say world end, normal world, even when you try to show us in our best light, they insult us. Without meaning to, you know, they don’t mean to, but they’re looking up and saying ‘See, look what you can do with your life, even if you have a mental illness?’ Well, I am sorry buddy, I’m the one with the mental illness, you know, not you. It really is a ….sadness. (Quinn)
           
These passages say something about the inner life worlds of people with psychiatric illness and emphasize the distance felt between the individual and the so-called ‘normal’ world.

Experiences of the Move
The move from RVH to newly designed and renovated facilities were not meant to be permanent moves for most individuals. In the new model of deinstitutionalization people are meant to ‘move through’ facilities to increasing levels of independence. Reflecting this, more than half of the people we interviewed have lived in more than one residence, with two women moving at least three times. People are moved according to the level of care required and the types of services available. Thus care is organized around facilities, rather than individuals. While this fits in with the mandate of facilities, frequent moves were sometimes experienced by people as highly stressful.

In reflecting on their new residences most (three quarters) indicated that they like where they live currently, although almost one third commented on ways in which they found even this new form of institutional life difficult, focusing on the ways in which their freedoms continued to be curtailed.

In reflecting on their experiences of the transfer process people emphasized different things, Beth, for example, describes how, despite the move to a new facility with more privacy and ostensibly more opportunities to make autonomous decisions, having a mental illness limits her freedom and makes her vigilant:

So, based on privileges I think, like it’s a privilege for me to be able to sit out here on this bench right now, because if I did something too wrong, I could be hauled back inside, transported away from here, you know, and put locked up in a little cell.  And you know, no possessions, no nothing, you know.  And it’s crazy to think that that’s possible, but anything’s possible... (Beth)

Beth’s comment shows her awareness of how tenuous her circumstances are and how little control she has over her day to day life. If she does something ‘too wrong’ her rights will be removed and she could be transported away to somewhere with even fewer freedoms.

In the transition from RVH, many individuals that we spoke to were experiencing, for the first time in many years, the opportunity to make decisions and carry out day to day routine tasks on their own. One man notes the complexity of how he experienced the change. He describes missing what he is familiar with, the routine of RVH and knowing how the system works, while at the same time acknowledging that given a choice, he would prefer to grow beyond his current level of functioning:

I don’t know if I noticed how they’re treated at X facility or versus Riverview, but I know for my own self, when I first got here I kind of missed Riverview in a way, because I was that close to becoming institutionalized, you know, like being totally dependent on the system, eh. I really didn’t want to end up that way. (William)       

Overall in reflecting on their new living situations it was clear that individuals were looking forward to a time when they were able to have a ‘real’ home, one that allowed them to live outside of institutional care. This was particularly significant for respondents who had been isolated from their cultural communities for long periods of time. Mary, an Aboriginal woman, had this wish for her future:         

I: What about, and if you were to think from five years from now, what would you like to be doing?
M: Going home.
I: Going home. Going back to X [name of Aboriginal community].
M: Going home.
I: Yeah. Do you have family there still?
M: Yeah, my brother, my mum’s brother is the Chief. (Mary)
                     
These passages take on a particular poignancy in view of the fact that despite the intention that people move through facilities the reality is that there are limited housing options for people with mental illness in their communities and so many will remain in institutional forms of care even after they are capable of living independently. Ultimately, changing models of care and more aesthetically pleasing facilities may have less of an impact on individuals than the degree to which they experience the ability to have control over their lives and their choices.

Activities
The emphasis in the facilities where we interviewed individuals was on assisting people with basic activities of daily living (cooking, cleaning, hygiene, money management, etc.,). Most individuals seemed to spend the better part of each day accomplishing these activities. However, they also had access to volunteer and paid work in specialized settings and to a range of recreational activities and outings on a regular basis. Activities mentioned were diverse and included: going to the local clubhouse, swimming, camping, playing volleyball, pub nights, social dinners, smoking, watching TV and bingo.

In our interaction with respondents and in our observations, we found that the degree to which individuals were engaged in activities was in part dependent on their overall level of mental well-being. Thus, some individuals appeared very listless, confused and lethargic, while others seemed to be more highly engaged in activities and socializing. Gendered differences did not always predictably follow traditional gendered roles. For example, in some instances it seemed that women were more engaged in household chores like cooking and laundry than men, but staff reports suggest that participation in these activities may have had more to do with level of wellness than gender per se.

A theme running through the interviews was a desire to have meaningful activity and especially paid work opportunities. Robert indicated:
           
Oh, I’ve had all slavery jobs and you know, when I was out in Coquitlam, and I’ve never really had like a full-time on the outside (job), because I’ve never had chances to have one, if you understand what I’m saying. (Robert)
               
Those who did have paid work opportunities spoke positively about them. Sylvester had this to say about himself:

I: Oh, okay, alright. So one of the things that we usually just start with is if you could just tell me what a typical day looks like for you here?   
S: A typical day is a workday on Monday, Wednesday and Friday. I love working with that.
I: Okay. Loves working. I am getting it on tape as well.
S: That’s okay. Sylvester loves working as much as he can.
I: Oh that’s great! And could you work at X more if you wanted to?
S: No, just Monday, Wednesday and Friday. (Sylvester)
               
The desire for work was tied to concerns about having enough money or feeling limited or controlled regarding the use of their money:

I: Why is Riverview better?
L: Well, I got a package of cigarettes every day and $34 a week.
I: Right.
L: Here I get $200 a month. That’s not enough to smoke on.
I: Oh, I see. Do you get it all at the end of the month kind of thing?
L: I get $25 on Tuesday and $25 on Friday. I can’t even buy the carton and get it cheaper. (Lucas)

Overall, most of our respondents reported that they liked the flexibility they have in their new facilities and enjoy getting up when they want, eating when and what they want, and being able to go to local businesses and shops. However, this was attenuated by stories that illustrated the lack of concrete opportunities for meaningful activity, especially paid work and the ability to attain higher levels of autonomy.
               
Relationships with Others
In this category we clustered themes that referenced intimacy with family, friends, staff, and discussion about community contacts. Sixteen people had answers coded here, nine of whom were women. Fully one third of mental health care recipients that we spoke with indicated that they do not have contact with their family or with visitors. In their transfer from RVH, contrary to transfer guidelines, some appear to have been moved further away from family, while others had been long estranged from family members and friends.

Four people describe family relationships that seemed quite close. More women (9) than men (3) seem to have connections with family, particularly children, whereas men seemed to express more longing for sex and intimate partner relationships. Themes in several individual’s stories revealed a strengthening of connection with their ethnic communities as a result of the move.

Beth was an example of a woman who was struggling hard to maintain a relationship with her children. In the following passage she expresses her desire to be with her children and how this is motivating her to get better:

Yeah, yeah. I’m not going to cling to anybody to get me through this life, you know. I want my kids, you know, be able to talk to me and not feel like something’s wrong, I don’t want them to feel like yeah, this person’s just a chronic, you know, sad person. (Beth)

Two women and two men seem to have good friends and yet only one man described comfort with the quality of his friendships. Instead several of the men talked longingly about their desire for intimate female companionship. Terry’s interview, for example, had numerous references to his interest in women but also his concerns about being sexually appropriate. In contrast Sylvester spoke mostly about missing his wife whom he described himself as estranged from. In the following excerpt the interviewer probes at to why Sylvester misses RVH:

S: I loved it there.
I: You loved it at Riverview?
S: Yeah, because I got to see my wife at Riverview, she’s out in ___________.
I: Oh, and where is your wife now?
S: She’s in __________.
I: Okay
S: And I haven’t seen her, I haven’t seen [wife’s name] here now in nearly four years. (Sylvester)

In some instances men indicated they enjoyed having female staff care for them because this fulfilled some of their need for female connection.

I: Okay. So who takes care of you the most here? Is it a man or a woman?
R: Well, I prefer a female rather than a male.
I:  How come?
R: Because I’ve never been married in my life, and I’ve never had a chance to. (Robert)

It was clear that relationships for the individuals we interviewed were often fraught because of long-term estrangement from family and friends and/or significant disruptions because of the person’s institutionalization. Estrangement was also sometimes due to the person’s problematic behaviours in family interactions due to the complex experience of mental illness.  Despite this there was evidence that some individuals, especially the women we interviewed, were maintaining or rebuilding relationships with children and other family members as a result of their move.

Discussion
To find ourselves in the other and the other in us are in contrast with psychiatry with its emphasis on difference
(Jenkins (1994) in Appleton, 2000)

We began our paper with a discussion of how to make sense of the fragmented narratives of people with mental illness as they tell their stories of institutionalization. Like Rodriquez del Barrio (2007) and the work of Clarke, et al., (2005) we found that the stories of psychiatric patients were rarely told in a chronological fashion and thus the concepts of ‘space discourse’ and ‘braided time’ resonated with our findings.  Further, we assert that how people tell their stories is, in part, a reflection of their mental distress and potentially, the complex experiences of the many moves and disruptions in care they have experienced.

Psychiatric deinstitutionalization in most Western industrialized nations (Italy being the exception) is an ongoing process, continually prompting new discussions and debates about mental health care in the community and about how to provide care in ways that foster maximum autonomy and recovery for people. People’s experiences of institutionalization and their needs and desires post-institutionalization are rarely taken into account in these discussions. What the stories of the people we interviewed reveal, however, is that the experience of mental health care is shaped by a variety of factors, including the degree to which people experience their new settings as a ‘home’ and the degree to which they are assisted to find meaningful life activity.

 In BC deinstitutionalization is taking place in the context of severe housing shortages, especially in large urban centres. This has created barriers for individuals ready to move into the community and live more independently. Further, community-based supports for people with mental illness are still under-resourced and little has been done to augment services that provide important supports to assist people gain access to the aspects of citizenship to which we are all entitled- housing, income and education (Morrow, 2006, Trainor, Pomeroy & Pape, 2004). Other Canadian studies (e.g., the Provincial Psychiatric Hospital and Community Comprehensive Assessments Project – CAP in Ontario) have found that while medical needs are largely being met for people with mental illness there is a dearth of vocational, social recreational and educational services and supports (Koegl, Durbin and Goering, 2004). In addition, the supports that are there do not take into account social and systemic issues like gender, culture and ethnicity. All of this prompts us to be mindful of the fact that the provision of mental health services is just one aspect of a continuum of care that includes social supports and appreciates that men and women and non-dominant ethnic groups may have differing needs.


Conclusion
As communities throughout BC address how best to support residents living with mental illness, it is our hope that this paper illuminates the diverse ways in which institutional care is experienced. We want to emphasize that finding ways to listen to and interpret the experiences of people with mental illness is critically important in the context of mental health reforms and the development of new models of care. As evidenced in the stories of the people we interviewed even the best intentioned care cannot substitute for the recognition that loss is integral to living with mental illness. These are losses that are related to illness (the inability to concentrate, to differentiate at times between reality and illusion) but perhaps more significantly losses that accrue because of the lack of supports for people, the absence of control over their lives and of access to meaningful activities. 



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