Recovery from Severe Mental Illness: The Lived Experience of the Initial Phase of Treatment

Introduction
The recovery movement in mental health has developed as an emerging alternative model for mental health care and is now a guiding principle in the provision of mental health services (United States Surgeon General’s report U.S. Department of Health and Human Services, 1999). Four qualitative studies have examined the process of recovery as experienced by consumers and developed stage models of recovery that identify unique dimensions and issues in the recovery process (Davidson & Straus, 1992; Baxter & Diehl, 1998; Young & Ensing, 1999; Spanoil et al., 2002. Models of recovery, derived from consumers’ experience, can be valuable for understanding the issues, dynamics and person-environment interactions that promote or hinder recovery.

The initial phase of participation in psychosocial rehabilitation is particularly important in recovery. Consumers are often in crisis, experience little control and have few resources. Successful engagement in services may be complicated by the symptoms and disability of mental illness, by differences in goals between consumer and mental health workers and the complexity of mental health and social service systems ((Chinmen, 1999; Lang, 1999).

What do we know about the consumer experience in the initial phase of recovery? Baxter & Diehl (1998) describe initial phase issues of 1) the experience of crisis 2) a period of recuperation characterized by denial of illness, confusion and despair. Young and Ensing (1999) identify the importance of acknowledgement and acceptance of the illness as the major issue in the initial phase. Developing a desire to change, finding a source of hope and inspiration and a person to support them through the process are factors that facilitate recovery. Spanoil et al., (2002) describes the struggles of consumers in this stage: being overwhelmed by disability, trying to understand what is happening, confused, disconnected from self and others and experiencing little sense of efficacy. Davidson and Straus (1992) focus on the process of reconstructing a functional sense of self. The initial aspects of this process include 1) discovering the potential for a more active sense of self and 2) “taking stock of the self:” the process of evaluating one’s strengths and weaknesses before attempting life changes.

While there are similarities among studies in the description of initial phase issues there are several limitations to this literature. There is little focus on the essential social and environmental contexts of recovery; the use of a single retrospective interview doesn’t allow for examination of issues over time; the studies of recovery either describe the experience of consumers not currently involved in treatment or they fail to describe the important aspects of the treatment process and relationships.

The purpose of this study is to provide an empirically derived description of the lived experience of recovery of consumers participating in the initial phase of psychosocial rehabilitation. Specific aims of the study are to 1) identify the critical issues, tasks of recovery for consumers and mental health professionals in the initial phase of recovery 2) understand the significant interactions between person, illness, case manager, family and community that facilitate or hinder the process of recovery

Methods
Subjects
This study reports the results from the initial phase of a two year longitudinal study that is examining the lived experience of persons participating in psychosocial rehabilitation services. Subjects were recruited from Mental Health Resources, a non-profit mental health provider of services to persons with severe and persistent mental illness in St. Paul, Minnesota. In the initial phase, services included assertive community treatment teams and less intensive case management. A total of 60 subjects were consecutively referred to the study over a four-month period after their entry into Mental Health Resources programs. Inclusion criteria for the study were 1) a diagnosis of schizophrenia, schizoaffective, bipolar, chronic major depression, or substance abuse, 2) involvement in MHR for no more than four months, and 3) no evidence of a primary substance dependence diagnosis or organic brain syndrome. Five clients were excluded because of a primary diagnosis of substance dependence; five clients declined participation in the study; six clients were deemed too severely ill to participate in the study. Informed consent was obtained from the 44 subjects who participated in the study. The average age of subjects in the sample was 37 (SD = 10.57). The average length of illness was 18 years (SD = 10.50). Of the total sample, 68% were female and 32% were male.   Seventy-five percent of the subjects were Caucasian and 25% were persons of color. Moreover, 53% had a diagnosis of schizophrenia or other psychotic related disorders, 40% had a mood disorder diagnosis, and 7% had other diagnoses.

Research Method
A hermeneutic phenomenological paradigm guided the research approach. Hermeneutic phenomenology attempts to find, describe, and understand the individual’s subjective experience by systematically determining the invariant components of a particular phenomenon, e.g. be-ing a person with severe and persistent mental illness (Giorgi, 1985; Giorgi, 1997; Davidson, 1997; Van Manen, 1990). Although phenomenological research seeks the essence of the experience, there is the realization that the interpretation of that experience is socially constructed by the participants themselves and co-constructed with the researcher. Data were collected through semi-structured interviews that were audio taped. Interviews lasted from one to two hours. The interview focused on five questions: What are your life aspirations? How does participation in MHR services help you achieve your goals? What do you do that helps you achieve your goals? What obstacles do you experience in recovery? What do you need that you don’t have that would help you in recovery?

Themes were assigned and clustered based on a line-by-line and holistic reading of interview transcripts and accompanying materials as well as across-case comparisons. Essential themes were determined using the process of imaginative variation (Giorgi, 1985, 1997). Imaginative variation is a process whereby the researcher takes a concrete example of a thing, and imaginatively subtracts one feature, then another, discovering in the process which features are essential and which are not. A qualitative computer research program (Atlas-ti) was used to recode the transcripts according to the essential themes and retrieve the quotes to substantiate and describe the findings. Repeatedly reading and testing texts against proposed interpretations validated the findings.

Since qualitative research uses the researcher as the instrument of data collection and the center of the analytic process (Patton, 1990), it is necessary to establish mechanisms that hold the researcher accountable for the disciplined use of subjectivity. One method is for the researcher to be internally reflexive and forthcoming about his or her process (Armour, 2002). In addition to keeping an audit trail of raw data and a log of experiences, emotions, insights, and questions of the interviewer (DR), two consultants were used to monitor the influence of subjectivity on the data. The first consultant (WB) shadowed the interviewer and challenged the research process by independently listening to the audio taped interviews, writing reflections on the interviews, substantiating the determination of the essential themes, and reviewing the findings against the associated quotes from the transcripts. The second consultant (MP) was a specialist in hermeneutic phenomenology. She reviewed methodological procedures, essential themes, and descriptions of the themes.

Results
Five themes emerged from this study: life is happening around me, striving for independence, being in there with me, pacing recovery and creating optimal challenge, and wish for meaningful community participation.

Theme 1: Life is Happening Around Me
People in the study described a general sense that “life happens around them” and they were not participating in it. They experienced that they were “living at a different speed”. Since “real life” or the life most people live happens at a quick pace, they cannot entirely keep up or fully meet life’s demands. People described life as lacking structure and often they felt bored. The majority experienced major losses and felt disconnected socially, marginalized economically, and stigmatized by mental illness. Becoming ill took them away from other people and resulted in disconnection. People described the negative consequences of having become ill: dropping out of school, losing jobs and friends. Several people said that with more information some of these consequences could have been avoided. Many said they did not know how to “get into the system” when they initially needed guidance.

The loss of ones job, home, and important social roles leads to boredom and a sense of alienation. Many people spoke to their level of inactivity and the tedium it produced while at the same time they wanted to fill their time meaningfully. Several connected their boredom to a lack of money. Many said they had used sleep to fill up time, because they didn’t have enough money to do the things they would like to.

People also spoke to the experience of demoralization: worry, a sense of constricted options, discouragement, and an intermittent loss of hope. One person said, succinctly, “Sometimes, with this illness, you don’t feel like you have many options.” People expressed sentiments such as “projects seem to be impossible for me right now… [as are] little things like going to drug stores with your own prescription.”
Clients spoke strongly about the negative effects of provider turn over and the realities that providers often change, quit, or move. Provider turn over was reported for case managers as well as doctors, psychiatrists, and therapists. Respondents pointed out that they often had multiple providers which were confusing and there was a lack of integrated care. People pointed out that a short amount of time with many medical providers interfered with a sense of “being known”. Alternately, having a long-term provider gave them a sense of constancy. One woman described this well, saying, “I mean, with my doctor, I know her. And I know she’ll prescribe good drugs for me. But if I go somewhere else that I don't know, I don’t know if they’ll prescribe good drugs for me or not.” Finally people spoke to the brief tenures they had come to expect, especially in the social services.

Theme 2: Striving for Independence
Participants in the study described their aspirations and efforts to become more independent. This theme manifested in two ways: striving for independence and normalcy, and struggling with dependency and control. All clients expressed the desire for independence. One client spoke for many when he said “The main goal is to get back out into society and to become a productive member.”
The stated goals are not ends in themselves. It is not a GED for the sake of a GED. Rather the goals are a means of achieving the prized objective of returning to a sense of normalcy and to their lives before they became ill. Many expressed a desire to 1) do what other people do and 2) return to a former sense of self: to finish school, return to work, and get back to participating in former interests. One person made this link between independence and a sense of normalcy explicit by saying, “One goal would be to actually get back into mainstream society…I’m actually like everybody else.” Another person defined independent as “being able to function just like other people do without Mental Health Resources.”   When trying to define what is healthy or “normal,” several people spoke to seeking to emulate their friends who are well. One person summed up the issue this way: “Normal is doing what other normal people do.”

People also described their difficulties with being in a dependent role and often controlled by others. Although they expressed a strong, genuine desire to be free of government assistance, they also recognized that the lack of state or federal aid would put them in a financial bind. One woman summed this up: “I’m so sick of welfare and everything. I was off welfare for a year and a half and I ended up right back on it. I couldn’t make enough.”
Many desired to separate from parental supervision: “to live independently separating myself from my mom and dad; they’re over protective, and it’s hard to um, hard to separate myself from them.” Several people spoke to the loss of this sense of independence when they became ill. One respondent described getting ill as an infantilization. She said, “Then I became like a baby…I lost my independence; I lost my apartment.” Many described families who worried about them and the need to prove themselves both to their families and to providers. One man referenced the mental health system when he said, “You know how much, how many more years do I have to give you people…to let you know that I’m capable and able to set, to um, deal with life?” Another said, “It’s like they take my control away to a point I don’t like.”

Theme 3: Being in There with Me
People saw their case managers as helping them by 1) being “in there with me” (i.e. having a significant alliance), 2) really knowing the client in a personal as well as professional way 3) providing supplemental functioning: instilling and holding hope when the client cannot, “keeping perspective,” helping the client to structure, giving reassurance, providing information and encouragement – all within a deeply human and personal context. Clients report feeling known and cared for as people versus simply “clients.”

The case manager was seen as someone who is “in there with me”, as someone with information and access to resources who was on their side and invested in the person’s success.   Most people described having more of a personal relationship than a strictly professional alliance with their case managers. Many of them described their case managers as having gone above and beyond the call of duty in giving help. One woman tearfully described her case manager, though biologically younger than her, as a father figure: “When I’m lost, he comes and looks for me.”

Others contrasted their case managers with psychiatrists, doctors, and county financial workers who often seemed rushed and over-focused on their disability while lacking a sense of concern for them as a person, apart from their symptoms. A few clients did not feel as connected to their case managers and spoke to a lack of alliance. One said, “I don’t really feel like any … really do work with you.”   Others spoke to the availability of workers, “My case manager is a very nice woman, but she’s hard to get a hold of” while others had conflicts with the case manager about treatment goals: “His goal is for me to stay on medication and keep seeing my doctor. But I don’t want to stay on medications.”

Among those who were dissatisfied, most spoke to the role of time – that if they had more time with their case managers, they thought they would feel more of an alliance with them. A few spoke of the difficulty of opening up to people and the challenge of turn-over among professionals. One man said, “I keep things very superficial, and there’s a lot of things I won’t open up to unless it’s somebody that I [have] known…on a regular basis.”   Some desired to see their case manager more often, but couldn’t due to high case loads. Poorer alliances were strongly associated with a perception the case manager was rushed, symptom oriented, and didn’t really know the client as an individual.

The sense of being known and believed in was essential in successful working relationships. Clients felt that workers respected both their limitations and strengths. Clients spoke to the importance of “people who understand me” and “know me real well”. One client described the relationship: “He knows me real well…he knows how to talk to me, and how I can understand things.”

Most clients experienced their case manager as both caring and competent and took great comfort from this. Clients were able to borrow from the strength of the relationship. One person said, “I can call up and ask a question or say, ‘Can you help me in this area?’ It’s very relaxing.” Another stated, “It’s very helpful to have an advocate that knows the system, knows it’s screwed up and can (figure) this kind of stuff out…if I were doing it myself I wouldn’t know where to begin.”
The experience of “being known” by another was profoundly important. The case manager and other professionals who really “know” the person often compensate for the lack of being known by friends, family and children. Besides supplementing clients’ own functioning by helping them maintain these behavioral changes, case managers served an important cognitive function, they helped clients “keep perspective” and test reality. Many clients talked about how their own thinking became easily clouded when they were depressed or too isolated and how case managers helped them to re-orient and think more clearly. Clients also talked about how easy it is, when on their own, to despair and how the case manager encourages them to remain hopeful and continues to believe in them and in what they can do. Case managers thus helped clients structurally. They offered concrete, external structure and psychological structure that helped people remain focused on their goals, hold onto hope, and think clearly.

Theme 4: Pacing Recovery and Creating Optimal Challenges: The Invisible Work of Recovery
Severe mental illness creates a situation in which it is difficult to trust oneself, one’s perceptions and the assessment of one’s abilities. Coping with such a situation entails repeated weighing and measuring, evaluating and assessing of the potential opportunities and risks of any step in recovery.
People defined several areas in which they are personally active in their recovery. These include contemplating change, pacing recovery, keeping routines, helping others, seeking spirituality and accepting their illness. Many people were clearly in a contemplative stage of change. While they were not yet setting goals or taking action, they were thinking about doing so in a very conscious, intentional way.
This process of contemplation involves ambivalence. People described this as a difficult process to manage, often fraught with fear and ambivalence. One man spoke about a fear of returning to work too quickly: “I mean, I worked full time before and done okay with it, but I’m a little afraid of it because I don’t want to get too overstressed and have symptoms.” One woman spoke to her own ambivalence: “Sometimes I’d like them to go a little faster, but then, the next day; it’s like…oooh I have to could slow down”.

People sought ways to achieve a greater degree of independence and to “get back to how they were” at a manageable pace. They sought to avoid being bored on the one hand or overwhelmed on the other. In essence, they worked to create an optimal degree of challenge for them to “get back to normal”. The theme of maintaining a routine was a central issue. Many talked about feeling out of a routine and that it took work to develop one again. They expressed a sense that they had lost momentum. One man described the problem by saying, “When I’m sleeping, um, I don’t have an alarm clock…so I just kinda sleep in…I just get up when I feel like it”.

Those who were able to establish some routine experienced a sense of mastery and pride. One woman described, “I’m cooking again, and now I’m reading. I do floral arrangement, and you know I’m just starting to do the things I enjoy, you know, trying to get back into a routine.” People described pride, even in the “small things.” One man described his routine as “I go to my philosophy classes, and I go to church, and I pay all my bills on time. I like paying my bills.” Many also spoke to maintaining a regular routine as quite a struggle and to their own vacillating between doing too much and doing too little: “Some weeks I do too much and then other weeks I fall behind, and then I get all disorganized.” “It helps me to get up in the morning, but if I start falling behind and I get into a slump and I want to sleep all the time, or not do anything.” All people experienced struggles with hope and despair because “it’s (mental illness) so hard to overcome…”
Theme 5: Wish for Meaningful Community Participation

Many people spoke about their desire for more social connection and a greater experience of inclusion in the community. One person commented, “If you want health and wellness, you gotta have us be able to be in the community.” People expressed the desire for a wider social network, and one they perceived as “normal.” People enjoyed knowing the people in their building, being a part of a card club, displaying art, playing the piano, and just having friends.
Money and transportation were strong, recurring themes and were identified as significant obstacles that stood in the way of greater social involvement as well as independence. Many respondents, in fact, equated having more money and more easily accessible transportation as equivalent to having more meaningful engagement in the community and more independence, power, and agency. One man said: “Your destiny is controlled by a bus.” People saw better transportation as a means to achieve more social involvement and access better jobs. Others emphasized the rigid requirements associated with financial assistance, disincentives to return to work such as losing insurance and housing assistance.

Discussion
These findings have several implications for training, practice and improving recovery-oriented services. The analysis of consumer narratives provides a picture of peoples’ experiences from the beginning of psychosocial case management services to six months. The data of their experiences creates a map of critical issues and tasks for consumers and case managers that can be used in training and to improve case management services.

The development of goals in case management services raises several issues. The desire for increased independence is a priority for consumers and most people in this study saw work as a significant part of their recovery. The development of a range of work-oriented programs is clearly a necessary component of recovery-oriented services.    Previous research has shown significant differences between provider goals that focus on medication and treatment compliance and consumer goals that emphasize practical daily needs, social activities in “normal” settings and work (Chinmen, 1999; Lang, 1999). These differences suggest that attention must be given to strategies that facilitate collaborative treatment planning and negotiation of conflicts regarding goals. From a psychological perspective it is important to understand the dynamics that may be involved in goal setting so that genuine personal goals can emerge not driven by stigma or as a way of proving normalcy.

The theme of “being in there with me” highlights the importance of the person-case manager relationship that is based on taking time and making genuine personal connections. While many workers may naturally utilize supportive therapy approaches and provide supplemental functioning, specific training in this area is a requisite for intentional, informed, and effective practice. (Novalis 1993; Kingdom & Turkington, 1991). Similarly, people need help in structuring their goals and activities. In order to be successful people need to avoid the extremes of under stimulation and over stimulation. It is important to discuss early in the process the mandate for structure and the roles providers and consumers will play.

The consumer’s effort to pace recovery in the initial phase is in many ways the invisible work of recovery: contemplation, coping with hope and despair, acceptance of illness, and the development of daily routines. Understanding this invisible work can help providers to lessen their frustration and gain a different perspective of consumer resistance and other counter transference reactions.

The findings of this study identify several predictable issues that participants face in the initial phase of receiving case management services. Familiarity with these tasks can assist workers in developing greater understanding of the experience of recovery, setting realistic goals and evaluating progress.   The need of consumers for a routine that maintains and creates therapeutic momentum, a sense of mastery and normalcy are a crucial aspect of pacing recovery. Podvall (1990) has described the development of daily routines and disciplines based on interests, e.g. crafts, music, and sports, as a “mark of sanity” that is a critical milestone in recovery and suggests ways workers can facilitate this development.

The sense of constricted social opportunities experienced by consumers and obstacles to greater participation in the community underscore the importance of multiple strategies necessary for change. On the direct practice level, providers can help consumers cognitively broaden their thinking about options, provide resources and suggest alternatives. Providers need to think outside traditional referrals and focus on informal, non-professional networks and activities. The Friends Program (1999) and the Partnership Project (2001) provide examples of empowering consumers in developing social groups and activities.

At the same time, consumer-led program development is needed to expand avenues to social support and community involvement through services such as peer support programs and friendship groups where consumers are paired up with volunteers, churches, or other community groups. Collaborative efforts between consumers and providers are needed to improve services for critical issues such as relapse prevention (Davidson, 1997). Continued advocacy for protection of rights and increased resources for basic needs are essential aspects of recovery-oriented service highlighted by this research.
This study provides an example of a phenomenological method that takes the person’s subjective experience as the organizing construct and allows for the integration of disorder, health, and recovery factors. To view illness in this context provides a deeper and more realistic understanding of the complexity of living with mental illness and offers a framework that delineates the relevant aspects of context, coping, and resources needed to enhance recovery-oriented services for persons with severe and persistent mental illnesses.