What Does Recovery Mean for Me? Perspectives of Canadian Mental Health Consumers

Although recovery has become the new guiding vision for service practice within mental health systems (Anthony, 1993), many continue to struggle with the tensions in concepts, language and values between recovery and more traditional medical and rehabilitative models (e.g., Davidson, Lawless, & Leary, 2005; Davidson, O’Connell, Tondora, Styron, & Kangas, 2006; Davidson & Roe, 2007; Roberts & Wolfson, 2004; Summerville, 2005). In Canada, little consensus on the definition of recovery exists, and very little research has been conducted among stakeholder groups. This article presents findings from a Canadian study which sought to better understand the meaning of recovery from the perspective of mental health consumers.

Origins of Recovery in Mental Health

The concept of recovery represents a major philosophical shift in mental health as well as a departure from traditional biomedical or rehabilitative models of treatment. Recovery derives from several bodies of knowledge, including long-term outcome studies, the writings of consumer-survivors, developments in both addictions and psychiatric rehabilitation fields, and research showing substantial clinical improvement through treatment and specific interventions (e.g., Anthony, 1992; Fisher & Chamberlin, 2004; Gagné, White, & Anthony, 2007; Harding, Brooks, Ashikaga, Strauss, & Breier, 1987a, 1987b; Liberman, Kopelowicz, Ventura, & Gutkind, 2002; McGlashan, 1988; Pevalin & Goldberg, 2003; Rogers, Farkas, & Anthony, 2005; Sowers, 2005). According to Onken et al. (2007), who developed an ecological analysis of recovery dimensions, recovery definitions also reflect a wide range of sources and perspectives.

The Consumer-Survivor Vision of Recovery

Recovery has been described by mental health consumers who began publishing on their own recovery experiences in the late 1980s. Patricia Deegan was one of the first to write about recovery as a transformative experience that goes far beyond a “restitution” or “back to health” narrative (1988; P. E. Deegan, 1997, 2001) Writings have associated recovery with hope, acceptance and engagement (Ridgway, 2001); connectedness (Ahern & Fisher, 2001; Frese & Davis, 1997); self-determination and shared decision making (P. Deegan, 2007; P. E. Deegan & Drake, 2006; Frese & Davis, 1997; Schauer, Everett, & del Vecchio, 2007); supportive psychiatric relationships (McGrath & Jarrett, 2004); and peer support (Solomon, 2004).

Following a national conference in 2004, the Substance Abuse and Mental Health Services Administration (SAMHSA) of the U.S. Department of Mental Health and Human Services released a consensus definition of recovery, as: “a journey of healing and transformation enabling a person with a mental health problem to live a meaningful life in a community of his or her choice while striving to achieve his or her full potential”. This definition includes ten specific components: self-direction; individualized and person-centered; empowerment; holistic; non-linear; strengths-based; peer support; respect; responsibility; and hope (Substance Abuse and Mental Health Services Administration, 2007)

Recovery as Empowerment

Consumer-survivors emphasize resourcefulness and resilience as the basis of recovery. Early proponents of the empowerment vision asserted that full emotional recovery is possible for everyone (Ahern & Fisher, 1999, 2001; Fisher, 1999). Whereas some survivors acknowledge the importance of psychotropic medications in recovery (Paquette & Navarro, 2005), most would agree with Lunt (2002) that “… the biochemical solution does not bring with it a dream, a goal, a journey, a direction, an inspiration, a faith, or a hope. These are what are sought in recovery”.

Recovery as Re-Formulated Identity

Much literature focuses on recovery as a personal effort to “renegotiate” the identity that has been shattered by mental illness. Davidson & Strauss (1992) first identified the self as a key theoretical construct, defining the recovery process around the rediscovery, reconstruction and utilization of a more functional sense of self. Corin (2002) described a process of “positive withdrawal” used by consumers struggling to reestablish identity. The self, or personal identity, was also a central organizing principle in the works of Jacobson (2001); Kelly & Gamble (2005); Lunt (2000); Pettie & Triolo (1999); Oades et al, (2005); and Schiff (2004). According to proponents of trauma models, mental illness changes a person forever; there can be no return to one’s previous condition (Davidson, O’Connell, Tondora, Staeheli, & Evans, 2005).

By contrast, Spaniol et al. (cited in Pettie & Triolo, 1999) found that the pre-illness self was perceived by consumers as a positive and better self, and the standard for measuring progress. Twenty-three percent of participants in the Tooth et al study (2003) wanted to be like “normal people”. Young & Ensing (1999) described “moving forward”, but also “regaining what was lost”.

Recovery as a Process

Another major focus of research is on the recovery process (e.g., Davidson et al., 2005; Davidson & Staynor, 1997; Smith, 2000; Spaniol, Wewiorski, Gagne, & Anthony, 2002; Tooth, Kalyanasundaram, Glover, & Momenzadah, 2003; Young & Ensing, 1999). Two descriptive studies by Resnick et al (2005; 2004) based on data from 825 recovering consumers, developed an empirical model of recovery composed of four domains: empowerment, hope, knowledge and life satisfaction. In Canada, Provencher (2002) identified self re-definition, spirituality, hope, empowerment and relationships as central elements; whereas Ochocka, Nelson & Janzen (2005), defined recovery as a “process of personal change”, and observed that how people negotiate self and external circumstances was critical.

Clinical Recovery

Clinical recovery, measured through outcome studies and expressed as approximation to cure, remains an important perspective in mental health (Harding, Brooks, Ashikaga, Strauss, & Breier, 1987a, 1987b; Harding, Zubin, & Strauss, 1992; Roberts & Wolfson, 2004). Liberman & Kopelowicz (2005) argued that “subjective attributes” of recovering are closely linked to symptomatic and functional improvement, adding that definitions of recovery in mental illness, need to include notions such as “remission”, “relapse”, and “entry and exit into the states of recovery”.

While the medical perspective is not the accepted definition of the consumer recovery movement (Andresen, Oades, & Caputi, 2003), some research suggests that clinical definitions of recovery may exist in the minds of consumers. Smith (2000) reported that consumers viewed “the right kind of medication” as a critical factor. Seventy-two percent of consumers in the Sullivan (1994) study, and close to half of participants in a recent Canadian study (blinded, under review) identified medication as important or essential in “getting better”.

OBJECTIVES

The overall objective of this study was to explore the meaning of recovery for stakeholders receiving, providing or planning mental health services in Canada, including mental health consumers, service providers and decision-makers¹. Findings presented in this article focus on definitions of recovery among a diverse sample of consumers. As the concept of recovery is relatively new in Canada, and very little research has been conducted, our aim was to determine their understanding of the concept.

METHODS

Setting and Sample

This study was conducted at three sites: 1) Montreal, Quebec, at the Wellington Centre of the Douglas Mental Health Institute, 2) Ontario, at the Canadian Mental Health Association Waterloo/Wellington-Dufferin branches and 3) Quebec City, at PECH (Programme d’encadrement clinique en hébergement), a community organization providing housing and support services.

An Advisory Committee including consumers, service providers, Ministry representatives, and a researcher from Yale University Program for Recovery and Community Health oversaw the research. The Committee met three times between September 2005 and June 2007 and validated the research process, interview guide, and emerging findings.

Inclusion criteria for consumer participants included that they 1) be diagnosed with serious mental illness; 2) be receiving mental health services for at least six months; 3) be between eighteen and sixty-four years old; and 4) not have a primary diagnosis of intellectual impairment.

Consumer recruitment was by self-referral. In Montreal, presentations on the research were offered, and written announcements posted. Interested consumers were invited to telephone the investigators directly. A similar procedure was followed in Ontario. In Quebec City, staff distributed pamphlets describing the research to their clients. Individuals interested in participating were asked to return a self-addressed, stamped envelope to the Montreal research team. The project coordinator screened potential participants by telephone for eligibility and ability to undergo the interview. In all 113 consumers contacted the research team.² Ten consumers did not meet the eligibility criteria, 6 could not be reached and 6 others declined to participate for lack of interest. Another 29 consumers were not selected once sample size was reached. In all 62 participants were selected to participate in the study. Two persons missed the interview. The principal investigator and three research assistants conducted 60 semi-structured consumer interviews between December 2005 and February 2007³. Interviews took place in offices at each site and lasted between forty five and one hundred minutes. Interviews were audio-taped and transcribed verbatim.

Ethical Considerations

Participation in the study was voluntary. Ethics boards from each of the three sites approved the research. All participants signed and received a copy of the consent form. They received a small honorarium. In reporting the findings, no identifying information has been used.

Description of sample

Consumers included 54 persons, 52% female. Their mean age was 43.6 years (SD 8.96). Fifty percent spoke English. Thirty five percent had high school education, and forty seven percent post-secondary education. Over half the participants reported their most recent diagnosis as bipolar disorder (30 %), or schizophrenia (28%). Although 45% were involved in paid or unpaid work, social assistance was the principal source of income for 68 %. The majority (93 %) had been employed during their lifetime. Most (95%) were on psychiatric medications, although seventy-two percent had not been hospitalized in the previous year.

Instruments

Semi-structured interview guides were developed after consultations between the research team and Advisory Committee, and a literature review. The twenty-one open-ended questions included: 1) personal meaning and definition of recovery; 2) indicators of recovery; and 3) impact of mental health services on recovery. The interview guide was pre-tested with two consumers. Minor changes were made. A short socio-demographic questionnaire was developed, and administered following each interview.

Analysis

Data analysis was inductive and ongoing over a 15 month period (Erlandson, Harris, Skipper, & Allen, 1993; Lincoln & Guba, 1985). No pre-set theoretical framework influenced data analysis. Thus, conceptualization of the phenomena under investigation (recovery) was dependent on the findings that emerged from the data. Data analysis involved three distinct stages. First, all interviews were coded independently by two members of the research team. Inter-rater reliability was between 80–90%, meeting acceptable standards for qualitative research (Boyatzis, 1998). Initial codes were developed from the questionnaire and new codes were added as they emerged from the data. In all, there were six iterations of the coding scheme. Second, the data reduction process began as summaries were completed for each interview on each theme. These summaries provide a detailed reconstruction each person’s discourse in relation to the meaning of recovery. Third, summaries were compared and contrasted, and rewritten as a single analytical summary.

Specific efforts were taken to ensure the trustworthiness of the study. Data analysis was a shared process involving constant feedback and discussion among members of the research team (principle investigator and two research assistants). The Advisory Committee reviewed the methodology and emergent findings at key stages. A detailed audit trail was kept over the course of the study. This included: raw data (questionnaires/transcriptions); and data reduction and analysis materials (interview summaries, codebooks, and memos).

FINDINGS

Findings revealed two contrasting meanings of recovery (See Figure 1). In the first definition, consumers linked recovery to illness, to a cure, to the right medication, or better health. They also saw recovery as a return to their former selves. In the second definition, recovery implied self-determination, becoming actively engaged in a process that would ultimately transform the self. It is important to note that consumer definitions often cut across both perspectives.

Figure 1.

Consumer Meanings of Recovery

Recovery in Relation to Illness

Forty-one consumers (41/49)⁴ defined recovery in relation to illness. Fourteen hardly considered recovery a realistic possibility, as mental illness was, for them, a permanent condition. Pierre⁵ defined recovery as “adaptation to illness”. Others stated that mental illness would always “be a part of us” and “once you get the mental illness, you always got it”. For William, just having to describe his symptoms over and over to doctors “holds you into a state of illness and not wellness”, which reinforced his self-identification as an ill person.

Five consumers compared mental with physical illness. Patricia was convinced that a chemical imbalance will always be present in her body:

My unbalance… it stays there, in my body. You can’t deny that it’s that, it’s physical as well as mental, in my case…So a cure, it’s like I would no longer have anything… and my unbalance in terms of my serotonin, no more. That’s not possible or hardly possible.

George added: “It’s like diabetes, you know, there’s no cure but there’s a balance”. Charlie has a “glitch in (his) body that can’t be fixed … right now”. Susan thinks of herself as a “malfunctioning machine” that needs fixing, and was enraged when told that recovery wouldn’t obliterate her illness. This group of consumers define recovery according to three overall themes: 1) recovery means a cure; 2) recovery depends on medication; and 3) recovery means returning to my former self.

Recovery means a cure

Twenty-three consumers defined recovery as cure. Tom described recovery as “getting over the mental illness that you have. Tania imagined recovery as getting “unstuck”. Viewing recovery as “… no depression, no disorders …”. Susan described the magical moment where there would be:

… a 100% turn around. You’d wake up one morning and nothing, no signs of anything that it’d ever existed … like it would be my past …

By contrast, some consumers recognized recovery within a state of permanent illness. Nicole resolved “to live well with my illness; that would be… recovery”. Susan eventually decided to focus on, “the good aspects of (your disability)”. Other consumers spoke about “avoiding relapse”, “holding onto gains”, “accepting limitations”, and “reducing medications”, as the best they could do. Patricia felt comfortable with her intrinsic “hypersensitivity”: “thankfully, that’s what makes me my own person”

For some, each hospital discharge was a “recovery”. For George, recovery occurs “when you first come out of the hospital”, and “get back on your feet”. Observing that recovery is not part of hospital language, William stated: “I have been hospitalized twenty-four times so I have recovered twenty-four times”.

Recovery depends on medication

Medication played a critical role for fourteen consumers who defined recovery as a cure. Several, like Lucy, insisted that the right medication is crucial: “(O)lanzapine transform me from a dark mood, low patience, and crazy woman into a very happy crazy woman”. For others, compliance was key: “… the main object is to stay on the right track, and take your medication no matter if you’re feeling better or not …”. Laura questioned herself:

It’s good - recovery, but is it because of medication…to see life in a better way? Or is it really me?

Medication inspired hope in people: “As soon as I got on the medication and started feeling better”, Harvey stated, “that brought back hope that I could do even better and better as time went on”. Susan’s dream was that “you get up one day and all the medications they give you will work”. By contrast, Mathieu, who considered medication itself as “a pretty fast recovery” viewed taking medications a “crutch”. True recovery, for him and several others, meant eliminating medications.

Recovery means returning to my former self

Twenty consumers defined recovery as returning to their “old” self. They described the importance of reclaiming who they were before mental illness struck. As Angela stated, in recovery,

… a person is back to the usual self as they were before the so-called mental illness struck. I think that can be defined as recovery.

Ted was very pleased when a friend recognized “his old self”. William added:

Recovery is getting back something that you’ve lost. And because I got ill later in life, I was already working, I was already functioning quite fully… And recovery would mean getting that back.

Thirteen consumers also defined recovery as a return to “the normal world”. Nancy stated, “one day … I will be a normal person, which I was eighteen years ago”. Others simply hoped to overcome their visible symptoms sufficiently that they wouldn’t feel “out of the ordinary” with people. Consumers were anxious to shed their label as mentally ill, but cautioned that a return to normal may depend on others’ acceptance. Louis stated:

Recovery is a way of; I don’t know how to put it … a way of being acceptable … I’m not an outcast, you know, when they throw you on a corner, left there by yourself”.

William expressed his concerns:

Ya know, as long as I’m looked at as a person with a mental illness I’m marginalized. And, when I’m no longer looked first as the person with a mental illness, but rather first as ya know, having the capacity to contribute to society. Then I would say I’m on a road to recovery. So recovery isn’t really defined by me, I don’t think, as much as it’s defined by, uh, the people that I interact with …. I don’t think by that definition that I’ll ever completely recover.

Recovery in relation to Wellness

Thirty-nine consumers (39/49) described a second meaning of recovery in which the person affirms self over illness and engages in a process. As Samantha put it: “as long as I am sort of my own self, then I know I am in recovery”. Sonia observed that recovery involves many aspects. The most important thing is to want to recover, and believe that recovery is possible. This definition suggests that mental illness and recovery are just part of life. Cindy downplayed her situation:

Ya, I don’t try to think of it as a major problem. It is just something like a cut on your hand. You just kind of live with it and keep going, you don’t dwell on it. As soon as you start dwelling on that … is when everything falls apart.

Denise agreed that struggle is normal in life: “… I think it’s normal for everyone, (but) especially with those … with the illness”. These consumers defined recovery according to three overall themes: 1) recovery means taking charge of life; 2) recovery is a process; and 3) recovery means evolving toward a new self.

Recovery means taking charge of life

According to twelve consumers, the person in recovery takes control of life. They conveyed this as “passing from negative to positive”; “moving from illness to wellness;” “ moving on with things”; “moving forward”; “leaving behind the shadows”; “taking action”; “scaling little mountains”; “letting myself go forward”; “regaining full possession of life”; “being responsible … and meeting your obligations …”. Looking for his “pot of gold at the end of the rainbow”, Louis contrasted illness and wellness:

It feels, well it feels like … everything seems to be passing by you and … you have no control over it. Well, with … recovery you feel like you have control outside..

For Janet, recovery is “like I’ve got somewhere to go. . . . it’s an opening. It’s an opening to learn”. Other consumers underlined that the ultimate responsibility for recovery rests with themselves. As Charlie put it:

I have to do this for me. Not because these people tell me I have to…. It’s good that they’re trying to tell me to do it, but it’s up to me to do it.

For Ophelia, knowing “what will work” is recovery, rather than relying too much on others’ expectations. Angela added:

… I have come to realize that nobody is going to give you direction if you don’t find it on your own. You can draw strength from people and bounce ideas, and move and so forth off them, but in the end you have to decide for yourself and take responsibility for yourself …

Overall, consumers expressed forward momentum. Ophelia described:

… (an) overall step by step improvement in my life. Looking back where I was ten years ago is not the spot where I am now; so I see it as a progression of moving forward.

Six consumers described setting goals and recognizing that “I achieved something”. Harvey stated:

When I achieve my goals, I consider that to be a partial recovery . . . . as I am able to fulfill my goals, I have hope that I can set the next goal and achieve that one as well. All the way up.

Cindy expressed satisfaction at her accomplishments stating, “if you have to work a little hard at something, sometimes it is much better in the end”. For Cheryl, recovery is:

Definitely growing and taking another look at where you are at, and where you can be; and it is inspiring …

Recovery means engaging in a process

Twenty-five consumers described recovery as a long-term process. Several advocated forgetting the past and its negative connotations. Janet found this difficult:

… I’m just so used to being sick that I don’t know what it is to be well…. I’ve always been standing in one spot for so long that I’m afraid to move, and even though I have been moving, it’s hard to tell myself that”.

Consumers spoke about moments that signalled the beginning of recovery. Ophelia stated

… I can’t pinpoint where the change happened, but I felt just shut down in the past, and then there was something … just that spark of hope for something. Then working on that.

Beginnings could also be dramatic. Rita identified the moment where she grasped onto the hope of recovery. She was on leave from hospital:

… that is when I turned around… I slept downstairs because I couldn’t make it upstairs … with that Christmas tree on all night flashing lights, and I am never going to forget that, because that is when I started getting better. I started my recovery.

Ghislaine spoke about a “rebirth”, or sudden realization that life was beginning to evolve differently:

…it was like I could no longer function…nothing was working in my head, nothing was functioning physically, nothing was working anywhere, and all of a sudden, youp, I was on all fours, I began to get up, get up, get up, get up, slowly. That’s recovery for me.

Nine consumers described the recovery process as facing difficulties and coping “day by day. Ghislaine stated: “I’m recovered ok, but I’ve got to work on myself everyday”. Carol and Samantha talked about the importance of maintaining daily routines at home.

Recovery is also an incremental step-by-step process. Consumers described the inevitable setbacks in terms of “plateaus”, “a roller coaster”, “quicksand”, and “getting stuck in the molasses”. Several lamented the ups and downs, complaining, for example, that “my recovery goes downwards”, or: “I go forward to go back”, or it’s like “two steps forward and one step back”. Janet claimed: “I don’t just take one step, two steps back, I take five or six”.

Consumers highlighted both personal effort and perseverance as important to the recovery process. Cindy “always gets through”, but cautioned that there are good days and bad days. Cheryl underlined the importance of a strong will in recovery:

… people get excited and, you know, they go for it but there has… to be something that keeps you coming back for more, ‘cause it’s a lot of self-education, and it’s a lot of personal will … to be in recovery. Because you have to want it … it’s … you have to go for it.

Recovery sometimes means letting time pass and going gradually. Tom talked about needing patience. For Ghislaine, a sudden recovery would be “artificial”. Lyse also appreciated that recovery is gradual:

It’s a process, it’s a process. It’ll take me … a while, but I don’t mind Because … my illness was a gradual process, so for me to recover it’ll be a gradual process, and therefore that gives me hope.

Recovery means evolving toward a new self

Consumers articulated that people mature in recovery, and begin to see themselves differently as their self esteem increases. Patricia expressed her determination to evolve: “You have to take your feet to your neck and tell yourself I’m continuing to advance”. Denise chose to “embrace the illness” and move on.

The person in recovery is a new and better person with a fuller life. For Gaston, recovery is “the keyword” that tells him he is a different person than before. Denise is happier with herself now that she is in recovery, becoming “… the person that I would like to be”. Other consumers expressed the positive aspects of recovery. Nancy stated: “Going through recovery has changed me as a person … not to harm myself, and think positive”. In Charlie’s words:

Press forward for the better and try to have a more positive outlook on things …. Now it is time to move ahead. Strive for the better I guess.

The experience of suffering helps people to grow. In recovery, Chantal has discovered that “there’s a purpose to living”. In Angela’s words

Recovery can mean a fuller life, and may even be fuller than what it was before because you are now with the realization that you have gone through the suffering process and you are stronger because of it.

Cindy tries to learn each time she “crashes”, and observed that setbacks can foster self confidence. She is grateful for her experience with recovery:

It is helping a lot. It is probably one of the best things I have went through, to tell you the truth. It has shown me that I am not a total weak person that I have always thought I was. I can do things that people have said I can’t.

DISCUSSION

This research represents an early attempt in Canada to elicit consumer definitions of recovery. Participants were consumers who represent three diverse geographic sites, and a wide range of socio-demographic, linguistic and cultural backgrounds. Although these consumers had not played a leadership role in the transformation to a recovery-oriented system, they were able to express their views on what recovery meant for them.

Overall, consumers defined recovery in terms of two perspectives: in relation to illness and in relation to wellness. Whereas in the first meaning recovery implies better mental health, in the second, recovery implies a better person, notwithstanding mental health. Most consumer definitions cut across both perspectives, suggesting that Canadian consumers view recovery as both a medical and psychosocial concept. This finding supports Davidson and Roe’s (2007) thesis that different forms of recovery may co-exist in the relationship of individuals to mental illness, and at different times. Canadian consumers are recovering, but often self-identify as ill.

Findings from this study support the literature, in which the concept of self is pivotal to recovery. Whereas in recovery related to illness, consumers described the self as “disabled” or “broken”; in the definition related to wellness, the self was experienced as the driving force in recovery. Individuals reacted to their brokenness by attempting to restore what they could of their earlier identity and circumstances – the “old self”. In the second definition they were attempting to turn a major life trauma into an opportunity to learn and evolve toward a “new self”.

The prominence of the illness perspective of recovery among consumers was unexpected. Many looked for recovery outside of themselves: in a cure, or in dreams of disappearing symptoms. Medication was viewed as important. Unlike trauma victims described by Davidson et al, (2005), consumers in this study yearned for their previous self. Even among consumers who described recovery as a process, few expressed Deegan’s “fiery indignation”, as the best protection for personal dignity (1997).

Findings suggest that consumers in this study have not entirely taken “ownership” of consumer-survivor definitions of recovery. This is not surprising when context is taken into account. While consumer-directed self-help groups do exist in Canada, the transformation to recovery-oriented services is only just beginning to take place, mainly through the efforts of policy makers, service providers and researchers. Unlike in the U.S., the Canadian recovery initiative does not have a long tradition of consumer leadership, influential pressure groups, or a civil rights tradition.

Strengths and Limitations

The strength of this study is that it included the viewpoints of mental health consumers from a variety of different geographic and service settings. Although all consumers were asked the same questions, certain limitations of the study and its methodology remain. As customary in qualitative research, the sample selection does not represent a generalized portrait of Canadian mental health consumers, and biases of social desirability (Katzer, Cook, & Crouch, 1991) must be acknowledged. Further, larger comparative studies with consumer groups are needed, as well as research on the role of Canadian service providers in promoting recovery.

CONCLUSION

The present study suggests the need for a “rapprochement” between the medical and psychosocial perspectives on recovery, as they are not mutually exclusive in the lived experience of mental health consumers. The consumers who participated in this study defined recovery as a dual reality: as a psychosocial process along the lines of the consumer-survivor perspective, but also as a medical event. As some have cautioned recently, consumer-survivor models of recovery demand a lot from consumers, and may be setting up either unrealistic expectations, or goals that some consumers are reluctant to pursue (Dickerson, 2006; Ramon, Healy, & Renouf, 2007; Roe, Rudnick, & Gill, 2007). Thus, conceptualizations of recovery need to account for both definitions if the recovery movement is to represent the views of all consumers.