Psychiatric Rehabilitation Journal 2016, Vol. 39, No. 2, 97–104
© 2015 American Psychological Association 1095-158X/16/$12.00 http://dx.doi.org/10.1037/prj0000160
Getting By, Getting Back, and Getting On: Matching Mental Health Services to Consumers’ Recovery Goals Bobbi Jo H. Yarborough, Micah T. Yarborough, Shannon L. Janoff, and Carla A. Green
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Kaiser Permanente Northwest, Portland, Oregon Objective: The goal of this study was to better understand mental health recovery from the point of view of mental health consumers to identify opportunities for practice improvements that closely align services with consumer goals and consumer-preferred outcomes. Method: As part of an exploratory study of recovery, semistructured interviews were conducted with 177 integrated health plan members diagnosed with schizophrenia, schizoaffective disorder, bipolar disorder, or affective psychosis. Transcripts of in-depth interviews were coded using Atlas.ti, and definitions of recovery were further subcoded. A qualitative analysis using a modified grounded theory approach and constant comparative method identified common themes and less common but potentially important recovery-related experiences and perspectives. Results: Three primary and 2 cross-cutting themes emerged. “Getting by” meant coping and meeting basic needs. “Getting back” meant learning to live with mental illness. “Getting on” meant living a life where mental illness was no longer prominent. Regaining control and recouping losses were cross-cutting themes. Conclusions/Implications for Practice: Mental health recovery is complex and dynamic; individuals’ recovery goals can be expected to change over time. Person-centered care must accommodate changing consumer priorities, services must be flexible and responsive, and outcomes need to match consumers’ objectives. Clinicians can assist in (a) identifying recovery goals, (b) monitoring progress toward and recognizing movement away from goals, (c) tailoring support to different phases/ stages, and (d) supporting transitions between phases/stages. Keywords: serious mental illness, recovery, patient-centered outcomes, mental health services
Leary, 2005; Davidson, Schmutte, Dinzeo, & Andres-Hyman, 2008; Gordon, 2013; Silverstein & Bellack, 2008; Whitley & Drake, 2010), there is also a lack of consensus on how to measure it from clinical and consumer points of view (Green et al., 2014; Slade, 2010; Williams et al., 2012), whether it should be measured as a process or an outcome (Andresen, Caputi, & Oades, 2006; Andresen, Oades, & Caputi, 2003; Davidson, Roe, AndresHyman, & Ridgway, 2010; Townsend, Boyd, Griffin, & Hicks, 1999), and what should constitute recovery-oriented practices (Lakeman, 2010; Le Boutillier et al., 2011). The ways that recovery is conceptualized and defined affect the way that recovery outcomes are measured (Campbell-Orde, Chamberlin, Carpenter, & Leff, 2005; Donnelly et al., 2011) and should inform the development of recovery-oriented practices as mental health service delivery is reshaped (Green et al., 2014; Kreyenbuhl, Buchanan, Dickerson, & Dixon, 2010). However, clinical measures of recovery tend to focus on symptoms relevant to diagnosis and do not always adequately evaluate consumercentered recovery processes or outcomes (Andresen, Caputi, & Oades, 2010; Crawford et al., 2011; Gordon, Ellis, Siegert, & Walkey, 2013). Furthermore, clinicians and consumers may differ in their assessment of service needs and outcomes (Crane-Ross, Roth, & Lauber, 2000; Crawford et al., 2011; Karow, Naber, Lambert, Moritz, & EGOFORS Initiative 2012). Better understanding the nature of consumers’ perspectives about recovery, and how recovery processes inform recovery goals and outcomes, is needed to develop and refine consumerresponsive practices that move the promise of recovery beyond rhetoric to reality.
In the 2 decades since Anthony (1993) heralded the 1990s as the “decade of recovery” and proposed that recovery be the “guiding vision of the mental health service system,” we have failed to achieve consensus on how to realize the vision. Although the dialogue of “recovery” and “recovery-focused services” is now well established, the field continues to be challenged by a lack of clarity regarding the details of what “recovery” means. For example, distinctions have been made between clinical and personal recovery (Anthony, 1993; Slade, Williams, Bird, Leamy, & Le Boutillier, 2012), with the former focusing on symptom reduction through effective mental health treatment with the goal of symptom remission, measured as an outcome (Lieberman et al., 2008), and the latter focusing on recovery as a personal process that may require neither symptom reduction (Deegan, 1988) nor mental health service use (Slade, 2010). In addition to a lack of clarity on how to define recovery (Bellack, 2006; Davidson, Lawless, &
This article was published Online First September 28, 2015. Bobbi Jo H. Yarborough, Micah T. Yarborough, Shannon L. Janoff, and Carla A. Green, Center for Health Research, Kaiser Permanente Northwest, Portland, Oregon. This research was supported by a grant from the National Institute of Mental Health (Recoveries from Severe Mental Illness, R01 MH062321). The authors thank the participants who shared their experiences and time with them. Correspondence concerning this article should be addressed to Bobbi Jo H. Yarborough, 3800 North Interstate Avenue, Portland, OR 97227. E-mail: [email protected] 97
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The Study of Transitions and Recovery Strategies (STARS) was a mixed-methods, longitudinal, exploratory study of recovery from serious mental illnesses. The qualitative analyses reported here represent an exploration of mental health consumers’ definitions of recovery from serious mental illnesses to identify the recovery goals and outcomes they deem most important, to make recommendations to enhance services, and to suggest possible consumercentered outcome measures. Longitudinal and other analyses completed as part of the study are available elsewhere (Green et al., 2013; Green et al., 2008; Green, Wisdom, Wolfe, & Firemark, 2012; Hendryx, Green, & Perrin, 2009; Wisdom, Saedi, & Green, 2009; Young, Green, & Estroff, 2008).
Method Setting The setting for this study was a not-for-profit, integrated health plan serving approximately 480,000 members in Oregon and Washington State. Kaiser Permanente Northwest (KPNW) provides inpatient and outpatient medical, mental health, and addiction services. The health plan maintains an integrated electronic medical record that contains comprehensive demographic, clinical, and health service utilization information for all of its members.
The Study STARS was a mixed-methods, exploratory, longitudinal study of recovery among individuals with serious mental illnesses. Participants completed two 1-hr-long interviews at baseline. Interviews at 12- and 24-months after enrollment averaged 1 hr each; paper-and-pencil questionnaire data were collected at each interview wave. Questionnaire and interview data collection were organized according to a theoretical model derived from a narrative review of the recovery literature. The model focused on processes of development, learning, healing, and adaptation influenced by prerequisites for action (agency, control, autonomy), sources of motivation (hope, optimism, meaning), and capacity (competence, dysfunction) and existing within environments that include resources and strains (Green, 2004). Over the course of the study, participants were asked to describe the following as part of interviews: (a) current life circumstances; (b) experiences living with mental illnesses; (c) the effects of having a mental illness on social domains (e.g., relationships, work); (d) their involvement in mental health services; (e) individuals, role models, and experiences that had been influential in their lives or their recovery process; and, in the final interview, (f) what recovery meant to them. Analyses for each wave informed the next wave of interview questions and questionnaire items, although a set of common measures and interview questions were asked across all waves. The study was approved and monitored by KPNW’s Institutional Review Board and Research Subjects Protection Office. After a complete description of the study was given, participants provided written informed consent before participation.
Participant Identification, Inclusion and Exclusion Criteria, and Recruitment Using health plan membership and diagnostic records, we identified potential study participants who had 1 year of health plan
membership before enrollment; medical record diagnoses of schizophrenia, schizoaffective disorder, bipolar disorder, or affective psychosis; and age ⱖ16 years. We excluded individuals with diagnoses that could interfere with informed consent, interview participation, or questionnaire completion (e.g., dementia); those whose clinicians deemed them currently unable to participate; and those not planning to remain in the area for the follow-up period. Those meeting inclusion criteria were stratified based on diagnosis and gender and randomly selected within those groups to achieve a roughly even representation of genders and individuals with schizophrenia spectrum (schizophrenia, schizoaffective disorder) or mood (bipolar disorders, affective psychosis) disorders. We approached 213 clinicians to review and cosign recruitment letters (also signed by the principal investigator). Four percent of letters were returned because the clinician did not recognize the potential participant; an additional 12% were returned unsigned, signifying clinician disapproval of recruitment because of psychological or residential instability. Fifteen clinicians did not return letters (representing 17 patients). Recruitment letters were mailed in small batches over 10 months and followed by phone calls. Our goal was to recruit 150 participants to achieve an adequate sample size for planned quantitative analyses, although we exceeded that number after attempting to recruit 418 potential participants and contacting 350 individuals. We received 127 (36%) refusals; 22 (6%) individuals were deemed ineligible. Of the 201 who initially agreed to participate by telephone, 17 (5%) did not complete the first baseline interview. We enrolled 184 (46% of those eligible) participants, although 3 did not complete the second baseline interview and 4 were excluded after the first baseline interview because study staff determined that the medical record inclusion diagnoses had been in error. The total number of participants was 177; 96% of those living at the time of the 24-month interview completed that interview (3 participants were deceased). Detailed baseline participant characteristics are described in Table 1.
Interview Procedures and Qualitative Data Analysis Five experienced, master’s- and doctoral-level research staff members with psychology and/or sociology training (three female, two male; including authors M.T.Y. and C.A.G.) conducted the semistructured interviews in medical or research clinics or in participants’ homes when necessary. Typically, only the interviewer and participant were present, but occasionally significant others observed. Interviewers and participants did not know one another before baseline interviews. Participants were informed of the reasons for the research. Results presented here were derived from interview responses only at the 24-month follow-up visit, at which participants were asked explicitly about what recovery meant to them (“We know we’ve asked you to do a lot of thinking about your life these last two years. After all this reflection, would you tell us what ‘recovery’ means to you? Or choose the word you prefer if you do not like ‘recovery,’ and tell us what that means to you?”). Among those completing the 24-month follow-up interview, 161 (96%) provided a codeable recovery definition. All interviews were audio-recorded and transcribed verbatim; field notes were appended to transcripts. Using a modified, grounded theory analytic approach and constant comparative analysis, study investigators and interviewers reviewed transcripts
MATCHING SERVICES TO CONSUMER RECOVERY GOALS
Table 1 Baseline Participant Characteristics
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Characteristic Gender Female Race White Black or African American American Indian or Alaska Native Asian or Pacific Islander Hispanic Mixed racial heritage Diagnosis Schizophrenia or schizoaffective disorder Bipolar disorder Affective psychosis Education No high school diploma or GED High school graduate Some college or technical school College degree Marital status Never married Widowed Divorced Separated Married Living with partner Past year household income ⬍$10,000 $10,000–$39,999 $40,000–$79,000 ⱖ$80,000 Receiving disability
N available data
n
%
92
52
167 10 5 3 1 8
94 6 3 2 ⬍1 5
75 84 18
42 48 10
13 33 68 59
8 19 39 34
38 14 29 5 77 16
22 8 16 3 44 9
16 83 49 18 44
10 50 30 10 25
177 177
176 177 177
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investigator triangulation enhance rigor (Patton, 1999). For analyses reported here, saturation (Miles & Huberman, 1994) was reached for each of the primary and cross-cutting themes. After completion of primary coding, the first and second authors (B.H.Y., M.T.Y.) developed a secondary, detailed coding scheme for responses to the question about recovery definitions. We reviewed text associated with each of these codes, allowing us to consolidate subthemes into higher-order common themes. We also looked for contradictory cases. In the sections that follow, we describe the most commonly discussed themes as well as less common mentions we identified as having important content.
Results Five overarching and interwoven themes emerged from our analyses. These themes, as well as related subthemes, are summarized below and illustrated with representative quotations. Unless otherwise specified, quotations are from different participants; the gender and age of participant in years follow each quote.
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166
173 M (SD)
Colorado Symptoms Inventory Score Recovery Assessment Scale Wisconsin Quality of Life Inventory/social support quality, past 4 weeks (SD)
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16.63 (10.70) 89.8 (14.8) 2.52 (.66)
throughout the data collection period to ensure transcript accuracy and appropriate interviewing techniques and to develop a general descriptive coding scheme. A team of eight interviewers and investigators began with open coding and then followed with axial, selective, and process coding (Glaser & Strauss, 1967; Strauss & Corbin, 1998a, 1998b, 1998c, 1998d, 1998e). Interviews were coded using the software program Atlas.ti (Friese, 2011). We completed check coding throughout this process to ensure coder consistency; inconsistencies were discussed and resolved by the team, and code definitions were revised when needed. To assess and improve coder agreement, check coding was completed on 10% of baseline interviews producing 80.9% agreement; agreement increased to 87.3% at the first follow-up interview and to 88.8% at the second follow-up interview. We also completed member checks (Lincoln & Guba, 1985) with a consumer advisory board that included study participants and consumer advocates after each wave of interviews and analyses. The full investigator group, including consumer advocates, sociologists, psychologists, anthropologists, psychiatrists, and statisticians, met after each wave of interviews to review and discuss findings from each wave of interviews, questionnaires, and health-plan data. Such data and
Theme 1: Recovery Means “Getting By” Participants who described “getting by” had low expectations for recovery. These individuals gave rich descriptions of experiences of living with overwhelming anxiety. One participant was skeptical of recovery, saying, “The longer I’m sick and the more medications that don’t work I start feeling more and more defective too. It’s hard to keep hopeful that something will work, but I have no idea what it’s going to take, to be honest” (Female, 46). This participant then reported that certain medications and therapies had been helpful, but none so far had been able “to really remove that underlying sense of overwhelming dread.” For these participants and others expressing similar ideas, recovery meant effective coping that offered relief from paranoia or persistent and unrelenting fear: I think [recovery is] also having inner peace and being able to function in society without fear that’s unreasonable. Sometimes just daily things like getting the paper off the porch in the morning when it’s still dark, not wanting to see the headlines, or not wanting to go out because there might be someone in the yard, things like that. They don’t bother me so much anymore. I am cautious but I’m not paranoid about it. I’ve been able to relax (Male, 36). Recovery means that I’m able to cope. Most people don’t live like I do; they don’t work in total isolation, afraid of people. I don’t think many people think that they’re causing outside disturbances, bothering people all the time . . . I don’t even like to talk to the neighbors, I always think they’re up to something, they have ulterior motives. God, just to be mentally able to cope with things . . . just to be able to go to church, to a meeting with people, a theater and not freak out, or listen to somebody give a lecture or something, I just can’t do it very well (Male, 48).
Participants talked about how bad things had been for them when they were acutely ill, how compromised they became when their symptoms were unmanaged, and how fragmented their minds and lives felt. Episodes of illness were contrasted with times when they were better able to take care of their basic needs. Adequate nutrition and sleep and the ability to maintain personal hygiene indicated some basis of self-control; thus, they
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were seen as sufficient indicators of coping and recovery. As one participant stated, “Bottom line, I guess recovery means to me . . . focusing on the things I can do to stay as healthy as possible. In other words, eating, getting some sleep, so real basic survival sorts of things” (Female, 58).
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Theme 2: Recovery Means “Getting Back” For others, coping and meeting needs for self-care were only the foundation that allowed a focus on higher-order goals that represented recovery. Individuals getting back tended to describe lists of daily goals, responsibilities, and tasks, such as getting along better with family and friends, maintaining employment, getting out in the community, and reengaging in hobbies and interests. Many defined recovery as returning to the way they were before they experienced mental health problems whereas others likened it to feeling back to “normal”—like someone without a mental illness must feel. I think recovery means . . . being able to do the things that anybody else can do. It means going to work, it means driving a car, it means being able to take care of your kids . . . it just means living a normal life similar to everybody else that doesn’t have bipolar disorder (Female, 37).
Many described “getting back” as a gradual process of coming to know your illness and its effects and how to best control or manage it to live a personally meaningful and satisfying life. One person commented, “It’s being able to know your illness well enough to gauge what you can and can’t do” (Female, 33). To another, it required “a continuous level of surveillance, attention and focus . . .” (Male, 55). Typically, this level of self-awareness came after many episodes of symptom exacerbation; much trial and error; and sometimes significant losses of dignity, relationships, or work. This was a deep, hard-earned, personal understanding of illness. As one individual articulated her experience of recovery: . . . it’s learning how to manage what my particular form of bipolar disorder is . . . it means not being afraid of it, and it means there’s things to understand . . . understanding what it is, what all the pieces are, understanding what my own . . . strategies are . . . (Female, 46).
For some individuals, greater understanding of their illness and its course meant learning to recognize when assistance, particularly professional care, could be helpful. “It means taking responsibility for yourself and seeking help when you need help” (Female, 49). Individuals talked about keeping appointments with mental health providers who were now seen as a valuable lifeline. Medications were also seen as a resource. Although opinions on the role of medication in recovery varied, for many, part of learning to live with a diagnosis meant making peace with a choice to use medications. “It means to keep my appointments regularly, taking my medication, that’s one of the most important things” (Female, 63). Some individuals described going on and off their medications multiple times before realizing that medications were beneficial, if not essential, to “getting back.” . . . every so often I would just go through this, this time, or phase, or something, where I’d say “what, I don’t have this, I don’t have anything wrong with me,” because I’d been going along taking my medication, and then I’d just “I’m not going to take this anymore”,
and . . . it would be a cycle of a few days or a week, and I would just be out of my mind again (Female, 61).
Theme 3: Recovery Means “Getting On” Most participants believed in recovery and conceived of it as reaching a point where they could get on with their lives, where illness and symptoms were no longer the dominant aspect of their identity or a primary strain on their resources. Where descriptions of getting back focused on the process of moving toward recovery, descriptions of “getting on” focused on the intended outcome of that process—moving forward. Recovery for individuals who described moving on meant reaching a point where they felt satisfied with how they were feeling and felt that significant others could see evidence of their ability to manage their symptoms. This allowed opportunities for independence and self-reliance that were desperately longed for: Recovery means overcoming your limitations . . . showing that you can have autonomy and take care of your bills and your lifestyle, and all the things you need to take care of, and you’re in control of your life (Male, 33).
Among individuals who defined recovery as getting on with life, symptoms were typically described as improved or reduced. Individuals talked about stability and described a sense of freedom to be themselves: “Recovery would be remembering a couple of times a month to come and pick up my prescription, then going on with the rest of my life worrying about more important things” (Male, 23).
Cross-Cutting Themes: Sense of Self-Control These recovery themes shared in common a need for a sense of self-control. As symptoms revealed themselves, mental health problems felt unpredictable. Thus, for those “getting by,” recovery was signaled by having just enough control that the illness no longer overwhelmed their sense of themselves or their lives. Those “getting back” found control through learning from and enduring episodes of illness; coming out on the other side; and being able, over time, to recognize personal triggers and vulnerabilities. They came to realize that what they had first recognized as constraints of the illness that were to be rejected could come to be understood as limitations to be accepted; managed; and, in some cases, overcome. Control was then defined in terms of benchmarks met as they made their way back to a sense of personal normalcy. For those “getting on,” mental illness and illness management were seen as insignificant, and individuals described their illnesses as “in control.”
Cross-Cutting Themes: Recouping Losses Also common across themes were the significant losses participants had experienced—losses of identity, relationships, work, self-esteem. Recovery was defined by many as the process of regaining what had been lost, although this differed across participants. For some it meant redefining a new self, for others it meant repairing old relationships, and for still others it meant needing to move on to build new ones. As participants described their histories and the consequences and costs of illness that shaped how they came to understand their
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MATCHING SERVICES TO CONSUMER RECOVERY GOALS
diagnosis and recovery, woven in the subtext of their stories was often a loss and then recovery of a unique identity apart from the diagnosis and symptoms. Over time, an illness identity was either adopted or imposed, and then substantial energy was spent managing the illness. This sometimes included, with difficulty, managing others’ perceptions while at the same time managing their own personal sense of identity. Participants recalled how relationships changed as family and significant others began to define and treat them according to behaviors that were associated with diagnoses. Some talked about the difficulty of asking for help from family or friends when loss of autonomy and self-determination were costs. Likewise, when symptoms made it temporarily difficult to manage responsibilities, participants described feeling as though others were disappointed in them, consequently lowering their expectations or taking responsibility for things participants had formerly done for themselves. This led to repeated losses of self-esteem. Thus, for some, recovery was measured as demonstrating competence and repossessing dignity: “Recovery would mean you could go to work and stay there, you could maintain a relationship without work, you could do something successful to make yourself proud, to get your self-esteem back, that would be recovery” (Male, 64). An important marker of recouping losses was being able to establish an identity apart from illness. “Recovery means to me being able to say I have a mental illness, but it’s not me, it’s not who I am, it’s not all me, I’m [person] over here and I have this mental illness, instead of it taking over my whole life” (Female, 42).
Discussion Participants with serious mental illnesses defined recovery as “getting by,” “getting back,” and “getting on” with a life similar to others without mental illnesses. Getting by was characterized by coping and persisting; narratives focused on experiences of living with mental illnesses, in which intrusive fear profoundly and negatively affected life and self-care. In contrast, descriptions of getting back and getting on were not limited to merely surviving. Those focused on getting back talked about engaging in processes to overcome the disruptions of mental health problems. They talked about learning to live with, and in spite of, their symptoms, while working toward achieving personally meaningful recovery goals (e.g., in relationships or work). Those who described getting on spoke of reaching a point where identity was based on things other than mental illness, which took a background role in a thriving existence. Although these themes were clear across study participants, and mapped well to previously documented phase or stage models of recovery (Andresen et al., 2003; Davidson, Roe, et al., 2010; Townsend et al., 1999), they did not sort neatly into single, mutually exclusive, categories. Rather, recovery definitions overlapped significantly, so that although there appeared to be a progression of phases, movement through these phases was nonlinear. Consistent with Davidson, Roe, et al. (2010), we found a much more complex process, with people moving back and forth, sometimes experiencing features of multiple phases at once. For example, a person could be getting back to relationships, life in the community, and work and then undergo an episode of symptom exacerbation, or a stigmatizing experience, and feel as though he
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or she is barely “getting by.” Such experiences, however long they endure, should not imply failure or regression but rather should be expected and understood as part of the course of recovery. Some experiences also accelerate recovery in certain domains but not others. It is interesting to note that these findings parallel descriptions of the experiences of individuals living with chronic medical illnesses (Charmaz, 1991) and those of other studies of consumerderived recovery definitions and needs (Davidson, Shaw, et al., 2010; Piat et al., 2009; Windell, Norman, & Malla, 2012), and they are remarkably consistent with autobiographical accounts and broader samples included in qualitative studies of recovery (Drake & Whitley, 2014).
Implications for Clinical Practice and Outcomes Measurement Our findings suggest that clinicians should encourage and instill hope for recovery while understanding that recovery will mean different things to different people and different things to the same person over time. Thus, assessing recovery goals and preferred outcomes should be an ongoing activity, as should assessment of service needs. Three types of services correspond to the primary themes we identified. Among individuals trying to “get by,” interventions that minimize acute symptom-related distress and reduce impairment are important and valued by consumers, as are collaborative approaches to medication management and other person-centered practices that aim to empower the person to manage their symptoms and make as many care and other decisions as possible. Such interventions are sometimes available; however, accessing them requires engagement in mental health services that are typically office-based. For individuals living in a near-constant state of fear or experiencing the world as unpredictable and unsafe, barriers to office-based care can be substantial. In-home outreach services may be more effective at addressing needs and beginning to build relationships and trust with service providers. Individuals who are getting by might also benefit from connections to nontraditional services, including peer providers who can serve as role models, inspire hope and optimism, and support engagement in selfdirected care. Outcomes measures for people in this phase should target anxiety, basic and social resources, and hope. For those who are trying to get back, services that are responsive to consumer preferences, target illness self-management (Cook et al., 2009; Mueser et al., 2006), improve occupational (Bond & Drake, 2014) and social functioning, and enhance well-being, and that promote life skills development (e.g., financial management, parenting), are likely to be welcome. Key outcomes measures for people in this phase should match consumers’ objectives: completing education, holding down a job, maintaining relationships, and managing physical health. For those getting on, desirable services will likely be used during symptom exacerbations and need to be accessible, ondemand, and consumer-driven, providing minimally necessary care within the context of continuous therapeutic relationships with clinicians who know the course and history of a person’s illness and treatment (Green et al., 2008). Such care might minimize reliance on and reduce unnecessary medications, focus on relapse prevention and maintenance of optimal mental and physical health, and move people out of the mental health system as
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soon as appropriate, allowing reentry when necessary. Key outcome measures for this phase should target future orientation, stability, and life satisfaction. Finally, in addition to supporting consumers within specific phases of recovery, our findings suggest opportunities for clinicians to assist consumers in recognizing changes and transitioning between phases. Although traditional mental health services are assumed to move people forward toward recovery, equally important appear to be services that ease transitions and minimize losses as people move away from recovery.
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Implications for Mental Health Policy A person-centered, recovery-oriented mental health service system should recognize that although symptom control is an important aspect of recovery for many, it is a means to broader recovery goals rather than an end in itself. Policies are needed that promote inclusion of these broader goals in mental health program planning and outcomes measurement at individual and systems levels. Moreover, recovery is dynamic and consumers’ goals change over time; therefore, care must be dynamic, outcomes measures must be responsive to changing consumer priorities, and services must be accommodating and flexible (Green et al., 2014). Finally, if we want consumers to “get on” with their lives, existing evidencebased services that support robust recovery goals need to be offered. Such services, delivered successfully, could prove to be cost-effective by helping people to resume their lives and minimize service needs.
Limitations Our sample of members of an integrated health plan differs from samples gathered in public-sector settings. Our study participants were more likely to be married and to have higher education and income levels than those in public settings, and characteristics such as social support and socioeconomic standing may influence individuals’ perceptions of recovery and opportunities for engaging in activities associated with recovery (e.g., work; Hendryx et al., 2009). It is also possible that some participants were further along in the recovery process than those in other samples; reports that many had previously received care in public settings are consistent with this interpretation. Nevertheless, 25% received disability payments, and our findings are similar to those reported across a range of samples and settings (Drake & Whitley, 2014). In addition, most participants in our sample were White (94%) and non-Hispanic, and conceptualizations of recovery are likely to differ across cultures (Slade et al., 2012).
Conclusions Services and a mental health system that are narrowly focused on symptom reduction fail to meet consumers’ recovery goals. Even for the most acutely and seriously impaired, symptom reduction serves to improve functioning—a means to achieving other recovery outcomes. Our work suggests that services should be targeted to match goals consistent with recovery phases, even as phases change. A person-centered, responsive mental health service system would anticipate realigning services, adapting to recovery goals and changing service needs rather than requiring
consumers to adapt their priorities to a limited set of available services (Green et al., 2014). Evidence-based rehabilitative services that extend beyond symptom resolution and aim for improving functioning and quality of life exist, but few have access to them or to longstanding, trusted clinicians who can facilitate appropriate service utilization.
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MATCHING SERVICES TO CONSUMER RECOVERY GOALS tice. Psychiatry: Interpersonal and Biological Processes, 73, 101–113. http://dx.doi.org/10.1521/psyc.2010.73.2.101 Deegan, P. E. (1988). Recovery: The lived experience of rehabilitation. Psychosocial Rehabilitation Journal, 11, 11–19. http://dx.doi.org/10 .1037/h0099565 Donnelly, M., Scott, D., McGilloway, S., O’Neill, T., Williams, J., & Slade, M. (2011). Patient outcomes: What are the best methods for measuring recovery from mental illness and capturing feedback from patients in order to inform service improvement? (COM/4409/10) Belfast, Northern Ireland: Public Health Service. Drake, R. E., & Whitley, R. (2014). Recovery and severe mental illness: Description and analysis. The Canadian Journal of Psychiatry/La Revue Canadienne de Psychiatrie, 59, 236 –242. Friese, S. (2011). User’s manual for ATLAS.ti 6.0. Berlin, Germany: ATLAS.ti Scientific Software Development. Retrieved from http:// www.atlasti.com/uploads/media/atlasti_v6_manual.pdf Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago, IL: Aldine. Gordon, S. E. (2013). Recovery constructs and the continued debate that limits consumer recovery. Psychiatric Services, 64, 270 –271. http://dx .doi.org/10.1176/appi.ps.001612012 Gordon, S. E., Ellis, P. M., Siegert, R. J., & Walkey, F. H. (2013). Development of a self-assessed consumer recovery outcome measure: My voice, my life. Administration and Policy in Mental Health and Mental Health Services Research, 40, 199 –210. http://dx.doi.org/10 .1007/s10488-012-0417-9 Green, C. A. (2004). Fostering recovery from life-transforming mental health disorders: A synthesis and model. Social Theory & Health, 2, 293–314. http://dx.doi.org/10.1057/palgrave.sth.8700036 Green, C. A., Estroff, S. E., Yarborough, B. J., Spofford, M., Solloway, M. R., Kitson, R. S., & Perrin, N. A. (2014). Directions for future patient-centered and comparative effectiveness research for people with serious mental illness in a learning mental health care system. Schizophrenia Bulletin, 40(Suppl. 1), S1–S94. http://dx.doi.org/10.1093/ schbul/sbt170 Green, C. A., Perrin, N. A., Leo, M. C., Janoff, S. L., Yarborough, B. J., & Paulson, R. I. (2013). Recovery from serious mental illness: Trajectories, characteristics, and the role of mental health care. Psychiatric Services, 64, 1203–1210. http://dx.doi.org/10.1176/appi.ps.201200545 Green, C. A., Polen, M. R., Janoff, S. L., Castleton, D. K., Wisdom, J. P., Vuckovic, N., . . . Oken, S. L. (2008). Understanding how clinicianpatient relationships and relational continuity of care affect recovery from serious mental illness: STARS study results. Psychiatric Rehabilitation Journal, 32, 9 –22. http://dx.doi.org/10.2975/32.1.2008.9.22 Green, C. A., Wisdom, J. P., Wolfe, L., & Firemark, A. (2012). Engaging youths with serious mental illnesses in treatment: STARS study consumer recommendations. Psychiatric Rehabilitation Journal, 35, 360 – 368. http://dx.doi.org/10.1037/h0094494 Hendryx, M., Green, C. A., & Perrin, N. A. (2009). Social support, activities, and recovery from serious mental illness: STARS study findings. The Journal of Behavioral Health Services & Research, 36, 320 – 329. http://dx.doi.org/10.1007/s11414-008-9151-1 Karow, A., Naber, D., Lambert, M., Moritz, S., & the EGOFORS Initiative. (2012). Remission as perceived by people with schizophrenia, family members and psychiatrists. European Psychiatry, 27, 426 – 431. http:// dx.doi.org/10.1016/j.eurpsy.2011.01.013 Kreyenbuhl, J., Buchanan, R. W., Dickerson, F. B., & Dixon, L. B. (2010). The Schizophrenia Patient Outcomes Research Team (PORT): Updated treatment recommendations 2009. Schizophrenia Bulletin, 36, 94 –103. http://dx.doi.org/10.1093/schbul/sbp130 Lakeman, R. (2010). Mental health recovery competencies for mental health workers: A Delphi study. Journal of Mental Health, 19, 62–74. http://dx.doi.org/10.3109/09638230903469194
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Le Boutillier, C., Leamy, M., Bird, V. J., Davidson, L., Williams, J., & Slade, M. (2011). What does recovery mean in practice? A qualitative analysis of international recovery-oriented practice guidance. Psychiatric Services, 62, 1470 –1476. http://dx.doi.org/10.1176/appi.ps .001312011 Lieberman, J. A., Drake, R. E., Sederer, L. I., Belger, A., Keefe, R., Perkins, D., & Stroup, S. (2008). Science and recovery in schizophrenia. Psychiatric Services, 59, 487– 496. http://dx.doi.org/10.1176/appi.ps.59 .5.487 Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage. Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis (Vol. 2). Thousand Oaks, CA: Sage. Mueser, K. T., Meyer, P. S., Penn, D. L., Clancy, R., Clancy, D. M., & Salyers, M. P. (2006). The Illness Management and Recovery program: Rationale, development, and preliminary findings. Schizophrenia Bulletin, 32(Suppl. 1), S32–S43. http://dx.doi.org/10.1093/schbul/sbl022 Patton, M. Q. (1999). Enhancing the quality and credibility of qualitative analysis. Health Services Research, 34, 1189 –1208. Piat, M., Sabetti, J., Couture, A., Sylvestre, J., Provencher, H., Botschner, J., & Stayner, D. (2009). What does recovery mean for me? Perspectives of Canadian mental health consumers. Psychiatric Rehabilitation Journal, 32, 199 –207. http://dx.doi.org/10.2975/32.3.2009.199.207 Silverstein, S. M., & Bellack, A. S. (2008). A scientific agenda for the concept of recovery as it applies to schizophrenia. Clinical Psychology Review, 28, 1108 –1124. http://dx.doi.org/10.1016/j.cpr.2008.03.004 Slade, M. (2010). Measuring recovery in mental health services. The Israel Journal of Psychiatry and Related Sciences, 47, 206 –212. Slade, M., Leamy, M., Bacon, F., Janosik, M., Le Boutillier, C., Williams, J., & Bird, V. (2012). International differences in understanding recovery: Systematic review. Epidemiology and Psychiatric Sciences, 21, 353–364. http://dx.doi.org/10.1017/S2045796012000133 Slade, M., Williams, J., Bird, V., Leamy, M., & Le Boutillier, C. (2012). Recovery grows up. J Ment Health, 21, 99 –103. http://dx.doi.org/10 .3109/09638237.2012.670888 Strauss, A. L., & Corbin, J. (1998a). Analytic tools. In Basics of qualitative research: Techniques and procedures for developing grounded theory (pp. 87–99). Thousand Oaks, CA: Sage. Strauss, A. L., & Corbin, J. (1998b). Axial coding. In Basics of qualitative research: Techniques and procedures for developing grounded theory (pp. 123–142). Thousand Oaks, CA: Sage. Strauss, A. L., & Corbin, J. (1998c). Coding for process. In Basics of qualitative research: Techniques and procedures for developing grounded theory (pp. 163–179). Thousand Oaks, CA: Sage. Strauss, A. L., & Corbin, J. (1998d). Open coding. In Basics of qualitative research: Techniques and procedures for developing grounded theory (pp. 101–121). Thousand Oaks, CA: Sage. Strauss, A. L., & Corbin, J. (1998e). Selective coding. In Basics of qualitative research: Techniques and procedures for developing grounded theory (pp. 143–161). Thousand Oaks, CA: Sage. Townsend, W., Boyd, S., Griffin, G., & Hicks, P. L. (1999). Emerging best practices in mental health recovery. Columbus, OH: Ohio Department of Mental Health. Whitley, R., & Drake, R. E. (2010). Recovery: A dimensional approach. Psychiatric Services, 61, 1248 –1250. http://dx.doi.org/10.1176/ps.2010 .61.12.1248 Williams, J., Leamy, M., Bird, V., Harding, C., Larsen, J., Le Boutillier, C., . . . Slade, M. (2012). Measures of the recovery orientation of mental health services: Systematic review. Social Psychiatry and Psychiatric Epidemiology, 47, 1827–1835. http://dx.doi.org/10.1007/s00127-0120484-y Windell, D., Norman, R., & Malla, A. K. (2012). The personal meaning of recovery among individuals treated for a first episode of psychosis.
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Received November 17, 2014 Revision received July 6, 2015 Accepted July 7, 2015 䡲
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Getting By, Getting Back, and Getting On: Matching Mental Health Services to Consumers’ Recovery Goals Bobbi Jo H. Yarborough, Micah T. Yarborough, Shannon L. Janoff, and Carla A. Green
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Kaiser Permanente Northwest, Portland, Oregon Objective: The goal of this study was to better understand mental health recovery from the point of view of mental health consumers to identify opportunities for practice improvements that closely align services with consumer goals and consumer-preferred outcomes. Method: As part of an exploratory study of recovery, semistructured interviews were conducted with 177 integrated health plan members diagnosed with schizophrenia, schizoaffective disorder, bipolar disorder, or affective psychosis. Transcripts of in-depth interviews were coded using Atlas.ti, and definitions of recovery were further subcoded. A qualitative analysis using a modified grounded theory approach and constant comparative method identified common themes and less common but potentially important recovery-related experiences and perspectives. Results: Three primary and 2 cross-cutting themes emerged. “Getting by” meant coping and meeting basic needs. “Getting back” meant learning to live with mental illness. “Getting on” meant living a life where mental illness was no longer prominent. Regaining control and recouping losses were cross-cutting themes. Conclusions/Implications for Practice: Mental health recovery is complex and dynamic; individuals’ recovery goals can be expected to change over time. Person-centered care must accommodate changing consumer priorities, services must be flexible and responsive, and outcomes need to match consumers’ objectives. Clinicians can assist in (a) identifying recovery goals, (b) monitoring progress toward and recognizing movement away from goals, (c) tailoring support to different phases/ stages, and (d) supporting transitions between phases/stages. Keywords: serious mental illness, recovery, patient-centered outcomes, mental health services
Leary, 2005; Davidson, Schmutte, Dinzeo, & Andres-Hyman, 2008; Gordon, 2013; Silverstein & Bellack, 2008; Whitley & Drake, 2010), there is also a lack of consensus on how to measure it from clinical and consumer points of view (Green et al., 2014; Slade, 2010; Williams et al., 2012), whether it should be measured as a process or an outcome (Andresen, Caputi, & Oades, 2006; Andresen, Oades, & Caputi, 2003; Davidson, Roe, AndresHyman, & Ridgway, 2010; Townsend, Boyd, Griffin, & Hicks, 1999), and what should constitute recovery-oriented practices (Lakeman, 2010; Le Boutillier et al., 2011). The ways that recovery is conceptualized and defined affect the way that recovery outcomes are measured (Campbell-Orde, Chamberlin, Carpenter, & Leff, 2005; Donnelly et al., 2011) and should inform the development of recovery-oriented practices as mental health service delivery is reshaped (Green et al., 2014; Kreyenbuhl, Buchanan, Dickerson, & Dixon, 2010). However, clinical measures of recovery tend to focus on symptoms relevant to diagnosis and do not always adequately evaluate consumercentered recovery processes or outcomes (Andresen, Caputi, & Oades, 2010; Crawford et al., 2011; Gordon, Ellis, Siegert, & Walkey, 2013). Furthermore, clinicians and consumers may differ in their assessment of service needs and outcomes (Crane-Ross, Roth, & Lauber, 2000; Crawford et al., 2011; Karow, Naber, Lambert, Moritz, & EGOFORS Initiative 2012). Better understanding the nature of consumers’ perspectives about recovery, and how recovery processes inform recovery goals and outcomes, is needed to develop and refine consumerresponsive practices that move the promise of recovery beyond rhetoric to reality.
In the 2 decades since Anthony (1993) heralded the 1990s as the “decade of recovery” and proposed that recovery be the “guiding vision of the mental health service system,” we have failed to achieve consensus on how to realize the vision. Although the dialogue of “recovery” and “recovery-focused services” is now well established, the field continues to be challenged by a lack of clarity regarding the details of what “recovery” means. For example, distinctions have been made between clinical and personal recovery (Anthony, 1993; Slade, Williams, Bird, Leamy, & Le Boutillier, 2012), with the former focusing on symptom reduction through effective mental health treatment with the goal of symptom remission, measured as an outcome (Lieberman et al., 2008), and the latter focusing on recovery as a personal process that may require neither symptom reduction (Deegan, 1988) nor mental health service use (Slade, 2010). In addition to a lack of clarity on how to define recovery (Bellack, 2006; Davidson, Lawless, &
This article was published Online First September 28, 2015. Bobbi Jo H. Yarborough, Micah T. Yarborough, Shannon L. Janoff, and Carla A. Green, Center for Health Research, Kaiser Permanente Northwest, Portland, Oregon. This research was supported by a grant from the National Institute of Mental Health (Recoveries from Severe Mental Illness, R01 MH062321). The authors thank the participants who shared their experiences and time with them. Correspondence concerning this article should be addressed to Bobbi Jo H. Yarborough, 3800 North Interstate Avenue, Portland, OR 97227. E-mail: [email protected] 97
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The Study of Transitions and Recovery Strategies (STARS) was a mixed-methods, longitudinal, exploratory study of recovery from serious mental illnesses. The qualitative analyses reported here represent an exploration of mental health consumers’ definitions of recovery from serious mental illnesses to identify the recovery goals and outcomes they deem most important, to make recommendations to enhance services, and to suggest possible consumercentered outcome measures. Longitudinal and other analyses completed as part of the study are available elsewhere (Green et al., 2013; Green et al., 2008; Green, Wisdom, Wolfe, & Firemark, 2012; Hendryx, Green, & Perrin, 2009; Wisdom, Saedi, & Green, 2009; Young, Green, & Estroff, 2008).
Method Setting The setting for this study was a not-for-profit, integrated health plan serving approximately 480,000 members in Oregon and Washington State. Kaiser Permanente Northwest (KPNW) provides inpatient and outpatient medical, mental health, and addiction services. The health plan maintains an integrated electronic medical record that contains comprehensive demographic, clinical, and health service utilization information for all of its members.
The Study STARS was a mixed-methods, exploratory, longitudinal study of recovery among individuals with serious mental illnesses. Participants completed two 1-hr-long interviews at baseline. Interviews at 12- and 24-months after enrollment averaged 1 hr each; paper-and-pencil questionnaire data were collected at each interview wave. Questionnaire and interview data collection were organized according to a theoretical model derived from a narrative review of the recovery literature. The model focused on processes of development, learning, healing, and adaptation influenced by prerequisites for action (agency, control, autonomy), sources of motivation (hope, optimism, meaning), and capacity (competence, dysfunction) and existing within environments that include resources and strains (Green, 2004). Over the course of the study, participants were asked to describe the following as part of interviews: (a) current life circumstances; (b) experiences living with mental illnesses; (c) the effects of having a mental illness on social domains (e.g., relationships, work); (d) their involvement in mental health services; (e) individuals, role models, and experiences that had been influential in their lives or their recovery process; and, in the final interview, (f) what recovery meant to them. Analyses for each wave informed the next wave of interview questions and questionnaire items, although a set of common measures and interview questions were asked across all waves. The study was approved and monitored by KPNW’s Institutional Review Board and Research Subjects Protection Office. After a complete description of the study was given, participants provided written informed consent before participation.
Participant Identification, Inclusion and Exclusion Criteria, and Recruitment Using health plan membership and diagnostic records, we identified potential study participants who had 1 year of health plan
membership before enrollment; medical record diagnoses of schizophrenia, schizoaffective disorder, bipolar disorder, or affective psychosis; and age ⱖ16 years. We excluded individuals with diagnoses that could interfere with informed consent, interview participation, or questionnaire completion (e.g., dementia); those whose clinicians deemed them currently unable to participate; and those not planning to remain in the area for the follow-up period. Those meeting inclusion criteria were stratified based on diagnosis and gender and randomly selected within those groups to achieve a roughly even representation of genders and individuals with schizophrenia spectrum (schizophrenia, schizoaffective disorder) or mood (bipolar disorders, affective psychosis) disorders. We approached 213 clinicians to review and cosign recruitment letters (also signed by the principal investigator). Four percent of letters were returned because the clinician did not recognize the potential participant; an additional 12% were returned unsigned, signifying clinician disapproval of recruitment because of psychological or residential instability. Fifteen clinicians did not return letters (representing 17 patients). Recruitment letters were mailed in small batches over 10 months and followed by phone calls. Our goal was to recruit 150 participants to achieve an adequate sample size for planned quantitative analyses, although we exceeded that number after attempting to recruit 418 potential participants and contacting 350 individuals. We received 127 (36%) refusals; 22 (6%) individuals were deemed ineligible. Of the 201 who initially agreed to participate by telephone, 17 (5%) did not complete the first baseline interview. We enrolled 184 (46% of those eligible) participants, although 3 did not complete the second baseline interview and 4 were excluded after the first baseline interview because study staff determined that the medical record inclusion diagnoses had been in error. The total number of participants was 177; 96% of those living at the time of the 24-month interview completed that interview (3 participants were deceased). Detailed baseline participant characteristics are described in Table 1.
Interview Procedures and Qualitative Data Analysis Five experienced, master’s- and doctoral-level research staff members with psychology and/or sociology training (three female, two male; including authors M.T.Y. and C.A.G.) conducted the semistructured interviews in medical or research clinics or in participants’ homes when necessary. Typically, only the interviewer and participant were present, but occasionally significant others observed. Interviewers and participants did not know one another before baseline interviews. Participants were informed of the reasons for the research. Results presented here were derived from interview responses only at the 24-month follow-up visit, at which participants were asked explicitly about what recovery meant to them (“We know we’ve asked you to do a lot of thinking about your life these last two years. After all this reflection, would you tell us what ‘recovery’ means to you? Or choose the word you prefer if you do not like ‘recovery,’ and tell us what that means to you?”). Among those completing the 24-month follow-up interview, 161 (96%) provided a codeable recovery definition. All interviews were audio-recorded and transcribed verbatim; field notes were appended to transcripts. Using a modified, grounded theory analytic approach and constant comparative analysis, study investigators and interviewers reviewed transcripts
MATCHING SERVICES TO CONSUMER RECOVERY GOALS
Table 1 Baseline Participant Characteristics
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Characteristic Gender Female Race White Black or African American American Indian or Alaska Native Asian or Pacific Islander Hispanic Mixed racial heritage Diagnosis Schizophrenia or schizoaffective disorder Bipolar disorder Affective psychosis Education No high school diploma or GED High school graduate Some college or technical school College degree Marital status Never married Widowed Divorced Separated Married Living with partner Past year household income ⬍$10,000 $10,000–$39,999 $40,000–$79,000 ⱖ$80,000 Receiving disability
N available data
n
%
92
52
167 10 5 3 1 8
94 6 3 2 ⬍1 5
75 84 18
42 48 10
13 33 68 59
8 19 39 34
38 14 29 5 77 16
22 8 16 3 44 9
16 83 49 18 44
10 50 30 10 25
177 177
176 177 177
173
investigator triangulation enhance rigor (Patton, 1999). For analyses reported here, saturation (Miles & Huberman, 1994) was reached for each of the primary and cross-cutting themes. After completion of primary coding, the first and second authors (B.H.Y., M.T.Y.) developed a secondary, detailed coding scheme for responses to the question about recovery definitions. We reviewed text associated with each of these codes, allowing us to consolidate subthemes into higher-order common themes. We also looked for contradictory cases. In the sections that follow, we describe the most commonly discussed themes as well as less common mentions we identified as having important content.
Results Five overarching and interwoven themes emerged from our analyses. These themes, as well as related subthemes, are summarized below and illustrated with representative quotations. Unless otherwise specified, quotations are from different participants; the gender and age of participant in years follow each quote.
173
166
173 M (SD)
Colorado Symptoms Inventory Score Recovery Assessment Scale Wisconsin Quality of Life Inventory/social support quality, past 4 weeks (SD)
99
16.63 (10.70) 89.8 (14.8) 2.52 (.66)
throughout the data collection period to ensure transcript accuracy and appropriate interviewing techniques and to develop a general descriptive coding scheme. A team of eight interviewers and investigators began with open coding and then followed with axial, selective, and process coding (Glaser & Strauss, 1967; Strauss & Corbin, 1998a, 1998b, 1998c, 1998d, 1998e). Interviews were coded using the software program Atlas.ti (Friese, 2011). We completed check coding throughout this process to ensure coder consistency; inconsistencies were discussed and resolved by the team, and code definitions were revised when needed. To assess and improve coder agreement, check coding was completed on 10% of baseline interviews producing 80.9% agreement; agreement increased to 87.3% at the first follow-up interview and to 88.8% at the second follow-up interview. We also completed member checks (Lincoln & Guba, 1985) with a consumer advisory board that included study participants and consumer advocates after each wave of interviews and analyses. The full investigator group, including consumer advocates, sociologists, psychologists, anthropologists, psychiatrists, and statisticians, met after each wave of interviews to review and discuss findings from each wave of interviews, questionnaires, and health-plan data. Such data and
Theme 1: Recovery Means “Getting By” Participants who described “getting by” had low expectations for recovery. These individuals gave rich descriptions of experiences of living with overwhelming anxiety. One participant was skeptical of recovery, saying, “The longer I’m sick and the more medications that don’t work I start feeling more and more defective too. It’s hard to keep hopeful that something will work, but I have no idea what it’s going to take, to be honest” (Female, 46). This participant then reported that certain medications and therapies had been helpful, but none so far had been able “to really remove that underlying sense of overwhelming dread.” For these participants and others expressing similar ideas, recovery meant effective coping that offered relief from paranoia or persistent and unrelenting fear: I think [recovery is] also having inner peace and being able to function in society without fear that’s unreasonable. Sometimes just daily things like getting the paper off the porch in the morning when it’s still dark, not wanting to see the headlines, or not wanting to go out because there might be someone in the yard, things like that. They don’t bother me so much anymore. I am cautious but I’m not paranoid about it. I’ve been able to relax (Male, 36). Recovery means that I’m able to cope. Most people don’t live like I do; they don’t work in total isolation, afraid of people. I don’t think many people think that they’re causing outside disturbances, bothering people all the time . . . I don’t even like to talk to the neighbors, I always think they’re up to something, they have ulterior motives. God, just to be mentally able to cope with things . . . just to be able to go to church, to a meeting with people, a theater and not freak out, or listen to somebody give a lecture or something, I just can’t do it very well (Male, 48).
Participants talked about how bad things had been for them when they were acutely ill, how compromised they became when their symptoms were unmanaged, and how fragmented their minds and lives felt. Episodes of illness were contrasted with times when they were better able to take care of their basic needs. Adequate nutrition and sleep and the ability to maintain personal hygiene indicated some basis of self-control; thus, they
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were seen as sufficient indicators of coping and recovery. As one participant stated, “Bottom line, I guess recovery means to me . . . focusing on the things I can do to stay as healthy as possible. In other words, eating, getting some sleep, so real basic survival sorts of things” (Female, 58).
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Theme 2: Recovery Means “Getting Back” For others, coping and meeting needs for self-care were only the foundation that allowed a focus on higher-order goals that represented recovery. Individuals getting back tended to describe lists of daily goals, responsibilities, and tasks, such as getting along better with family and friends, maintaining employment, getting out in the community, and reengaging in hobbies and interests. Many defined recovery as returning to the way they were before they experienced mental health problems whereas others likened it to feeling back to “normal”—like someone without a mental illness must feel. I think recovery means . . . being able to do the things that anybody else can do. It means going to work, it means driving a car, it means being able to take care of your kids . . . it just means living a normal life similar to everybody else that doesn’t have bipolar disorder (Female, 37).
Many described “getting back” as a gradual process of coming to know your illness and its effects and how to best control or manage it to live a personally meaningful and satisfying life. One person commented, “It’s being able to know your illness well enough to gauge what you can and can’t do” (Female, 33). To another, it required “a continuous level of surveillance, attention and focus . . .” (Male, 55). Typically, this level of self-awareness came after many episodes of symptom exacerbation; much trial and error; and sometimes significant losses of dignity, relationships, or work. This was a deep, hard-earned, personal understanding of illness. As one individual articulated her experience of recovery: . . . it’s learning how to manage what my particular form of bipolar disorder is . . . it means not being afraid of it, and it means there’s things to understand . . . understanding what it is, what all the pieces are, understanding what my own . . . strategies are . . . (Female, 46).
For some individuals, greater understanding of their illness and its course meant learning to recognize when assistance, particularly professional care, could be helpful. “It means taking responsibility for yourself and seeking help when you need help” (Female, 49). Individuals talked about keeping appointments with mental health providers who were now seen as a valuable lifeline. Medications were also seen as a resource. Although opinions on the role of medication in recovery varied, for many, part of learning to live with a diagnosis meant making peace with a choice to use medications. “It means to keep my appointments regularly, taking my medication, that’s one of the most important things” (Female, 63). Some individuals described going on and off their medications multiple times before realizing that medications were beneficial, if not essential, to “getting back.” . . . every so often I would just go through this, this time, or phase, or something, where I’d say “what, I don’t have this, I don’t have anything wrong with me,” because I’d been going along taking my medication, and then I’d just “I’m not going to take this anymore”,
and . . . it would be a cycle of a few days or a week, and I would just be out of my mind again (Female, 61).
Theme 3: Recovery Means “Getting On” Most participants believed in recovery and conceived of it as reaching a point where they could get on with their lives, where illness and symptoms were no longer the dominant aspect of their identity or a primary strain on their resources. Where descriptions of getting back focused on the process of moving toward recovery, descriptions of “getting on” focused on the intended outcome of that process—moving forward. Recovery for individuals who described moving on meant reaching a point where they felt satisfied with how they were feeling and felt that significant others could see evidence of their ability to manage their symptoms. This allowed opportunities for independence and self-reliance that were desperately longed for: Recovery means overcoming your limitations . . . showing that you can have autonomy and take care of your bills and your lifestyle, and all the things you need to take care of, and you’re in control of your life (Male, 33).
Among individuals who defined recovery as getting on with life, symptoms were typically described as improved or reduced. Individuals talked about stability and described a sense of freedom to be themselves: “Recovery would be remembering a couple of times a month to come and pick up my prescription, then going on with the rest of my life worrying about more important things” (Male, 23).
Cross-Cutting Themes: Sense of Self-Control These recovery themes shared in common a need for a sense of self-control. As symptoms revealed themselves, mental health problems felt unpredictable. Thus, for those “getting by,” recovery was signaled by having just enough control that the illness no longer overwhelmed their sense of themselves or their lives. Those “getting back” found control through learning from and enduring episodes of illness; coming out on the other side; and being able, over time, to recognize personal triggers and vulnerabilities. They came to realize that what they had first recognized as constraints of the illness that were to be rejected could come to be understood as limitations to be accepted; managed; and, in some cases, overcome. Control was then defined in terms of benchmarks met as they made their way back to a sense of personal normalcy. For those “getting on,” mental illness and illness management were seen as insignificant, and individuals described their illnesses as “in control.”
Cross-Cutting Themes: Recouping Losses Also common across themes were the significant losses participants had experienced—losses of identity, relationships, work, self-esteem. Recovery was defined by many as the process of regaining what had been lost, although this differed across participants. For some it meant redefining a new self, for others it meant repairing old relationships, and for still others it meant needing to move on to build new ones. As participants described their histories and the consequences and costs of illness that shaped how they came to understand their
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MATCHING SERVICES TO CONSUMER RECOVERY GOALS
diagnosis and recovery, woven in the subtext of their stories was often a loss and then recovery of a unique identity apart from the diagnosis and symptoms. Over time, an illness identity was either adopted or imposed, and then substantial energy was spent managing the illness. This sometimes included, with difficulty, managing others’ perceptions while at the same time managing their own personal sense of identity. Participants recalled how relationships changed as family and significant others began to define and treat them according to behaviors that were associated with diagnoses. Some talked about the difficulty of asking for help from family or friends when loss of autonomy and self-determination were costs. Likewise, when symptoms made it temporarily difficult to manage responsibilities, participants described feeling as though others were disappointed in them, consequently lowering their expectations or taking responsibility for things participants had formerly done for themselves. This led to repeated losses of self-esteem. Thus, for some, recovery was measured as demonstrating competence and repossessing dignity: “Recovery would mean you could go to work and stay there, you could maintain a relationship without work, you could do something successful to make yourself proud, to get your self-esteem back, that would be recovery” (Male, 64). An important marker of recouping losses was being able to establish an identity apart from illness. “Recovery means to me being able to say I have a mental illness, but it’s not me, it’s not who I am, it’s not all me, I’m [person] over here and I have this mental illness, instead of it taking over my whole life” (Female, 42).
Discussion Participants with serious mental illnesses defined recovery as “getting by,” “getting back,” and “getting on” with a life similar to others without mental illnesses. Getting by was characterized by coping and persisting; narratives focused on experiences of living with mental illnesses, in which intrusive fear profoundly and negatively affected life and self-care. In contrast, descriptions of getting back and getting on were not limited to merely surviving. Those focused on getting back talked about engaging in processes to overcome the disruptions of mental health problems. They talked about learning to live with, and in spite of, their symptoms, while working toward achieving personally meaningful recovery goals (e.g., in relationships or work). Those who described getting on spoke of reaching a point where identity was based on things other than mental illness, which took a background role in a thriving existence. Although these themes were clear across study participants, and mapped well to previously documented phase or stage models of recovery (Andresen et al., 2003; Davidson, Roe, et al., 2010; Townsend et al., 1999), they did not sort neatly into single, mutually exclusive, categories. Rather, recovery definitions overlapped significantly, so that although there appeared to be a progression of phases, movement through these phases was nonlinear. Consistent with Davidson, Roe, et al. (2010), we found a much more complex process, with people moving back and forth, sometimes experiencing features of multiple phases at once. For example, a person could be getting back to relationships, life in the community, and work and then undergo an episode of symptom exacerbation, or a stigmatizing experience, and feel as though he
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or she is barely “getting by.” Such experiences, however long they endure, should not imply failure or regression but rather should be expected and understood as part of the course of recovery. Some experiences also accelerate recovery in certain domains but not others. It is interesting to note that these findings parallel descriptions of the experiences of individuals living with chronic medical illnesses (Charmaz, 1991) and those of other studies of consumerderived recovery definitions and needs (Davidson, Shaw, et al., 2010; Piat et al., 2009; Windell, Norman, & Malla, 2012), and they are remarkably consistent with autobiographical accounts and broader samples included in qualitative studies of recovery (Drake & Whitley, 2014).
Implications for Clinical Practice and Outcomes Measurement Our findings suggest that clinicians should encourage and instill hope for recovery while understanding that recovery will mean different things to different people and different things to the same person over time. Thus, assessing recovery goals and preferred outcomes should be an ongoing activity, as should assessment of service needs. Three types of services correspond to the primary themes we identified. Among individuals trying to “get by,” interventions that minimize acute symptom-related distress and reduce impairment are important and valued by consumers, as are collaborative approaches to medication management and other person-centered practices that aim to empower the person to manage their symptoms and make as many care and other decisions as possible. Such interventions are sometimes available; however, accessing them requires engagement in mental health services that are typically office-based. For individuals living in a near-constant state of fear or experiencing the world as unpredictable and unsafe, barriers to office-based care can be substantial. In-home outreach services may be more effective at addressing needs and beginning to build relationships and trust with service providers. Individuals who are getting by might also benefit from connections to nontraditional services, including peer providers who can serve as role models, inspire hope and optimism, and support engagement in selfdirected care. Outcomes measures for people in this phase should target anxiety, basic and social resources, and hope. For those who are trying to get back, services that are responsive to consumer preferences, target illness self-management (Cook et al., 2009; Mueser et al., 2006), improve occupational (Bond & Drake, 2014) and social functioning, and enhance well-being, and that promote life skills development (e.g., financial management, parenting), are likely to be welcome. Key outcomes measures for people in this phase should match consumers’ objectives: completing education, holding down a job, maintaining relationships, and managing physical health. For those getting on, desirable services will likely be used during symptom exacerbations and need to be accessible, ondemand, and consumer-driven, providing minimally necessary care within the context of continuous therapeutic relationships with clinicians who know the course and history of a person’s illness and treatment (Green et al., 2008). Such care might minimize reliance on and reduce unnecessary medications, focus on relapse prevention and maintenance of optimal mental and physical health, and move people out of the mental health system as
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soon as appropriate, allowing reentry when necessary. Key outcome measures for this phase should target future orientation, stability, and life satisfaction. Finally, in addition to supporting consumers within specific phases of recovery, our findings suggest opportunities for clinicians to assist consumers in recognizing changes and transitioning between phases. Although traditional mental health services are assumed to move people forward toward recovery, equally important appear to be services that ease transitions and minimize losses as people move away from recovery.
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Implications for Mental Health Policy A person-centered, recovery-oriented mental health service system should recognize that although symptom control is an important aspect of recovery for many, it is a means to broader recovery goals rather than an end in itself. Policies are needed that promote inclusion of these broader goals in mental health program planning and outcomes measurement at individual and systems levels. Moreover, recovery is dynamic and consumers’ goals change over time; therefore, care must be dynamic, outcomes measures must be responsive to changing consumer priorities, and services must be accommodating and flexible (Green et al., 2014). Finally, if we want consumers to “get on” with their lives, existing evidencebased services that support robust recovery goals need to be offered. Such services, delivered successfully, could prove to be cost-effective by helping people to resume their lives and minimize service needs.
Limitations Our sample of members of an integrated health plan differs from samples gathered in public-sector settings. Our study participants were more likely to be married and to have higher education and income levels than those in public settings, and characteristics such as social support and socioeconomic standing may influence individuals’ perceptions of recovery and opportunities for engaging in activities associated with recovery (e.g., work; Hendryx et al., 2009). It is also possible that some participants were further along in the recovery process than those in other samples; reports that many had previously received care in public settings are consistent with this interpretation. Nevertheless, 25% received disability payments, and our findings are similar to those reported across a range of samples and settings (Drake & Whitley, 2014). In addition, most participants in our sample were White (94%) and non-Hispanic, and conceptualizations of recovery are likely to differ across cultures (Slade et al., 2012).
Conclusions Services and a mental health system that are narrowly focused on symptom reduction fail to meet consumers’ recovery goals. Even for the most acutely and seriously impaired, symptom reduction serves to improve functioning—a means to achieving other recovery outcomes. Our work suggests that services should be targeted to match goals consistent with recovery phases, even as phases change. A person-centered, responsive mental health service system would anticipate realigning services, adapting to recovery goals and changing service needs rather than requiring
consumers to adapt their priorities to a limited set of available services (Green et al., 2014). Evidence-based rehabilitative services that extend beyond symptom resolution and aim for improving functioning and quality of life exist, but few have access to them or to longstanding, trusted clinicians who can facilitate appropriate service utilization.
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Received November 17, 2014 Revision received July 6, 2015 Accepted July 7, 2015 䡲
Members of Underrepresented Groups: Reviewers for Journal Manuscripts Wanted If you are interested in reviewing manuscripts for APA journals, the APA Publications and Communications Board would like to invite your participation. Manuscript reviewers are vital to the publications process. As a reviewer, you would gain valuable experience in publishing. The P&C Board is particularly interested in encouraging members of underrepresented groups to participate more in this process. If you are interested in reviewing manuscripts, please write APA Journals at [email protected]. Please note the following important points: • To be selected as a reviewer, you must have published articles in peer-reviewed journals. The experience of publishing provides a reviewer with the basis for preparing a thorough, objective review. • To be selected, it is critical to be a regular reader of the five to six empirical journals that are most central to the area or journal for which you would like to review. Current knowledge of recently published research provides a reviewer with the knowledge base to evaluate a new submission within the context of existing research. • To select the appropriate reviewers for each manuscript, the editor needs detailed information. Please include with your letter your vita. In the letter, please identify which APA journal(s) you are interested in, and describe your area of expertise. Be as specific as possible. For example, “social psychology” is not sufficient—you would need to specify “social cognition” or “attitude change” as well. • Reviewing a manuscript takes time (1– 4 hours per manuscript reviewed). If you are selected to review a manuscript, be prepared to invest the necessary time to evaluate the manuscript thoroughly. APA now has an online video course that provides guidance in reviewing manuscripts. To learn more about the course and to access the video, visit http://www.apa.org/pubs/authors/reviewmanuscript-ce-video.aspx.
