In what remains the most influential conceptualization of quality in health care for services research, Donabedian (1) distinguished two domains. The application of medical science and technology to a health problem is the technical domain. Interactions between service users and practitioners constitute the interpersonal domain. Though few would disagree that interpersonal interactions with mental health practitioners are central to experiences of care for most persons with serious mental illness, practitioner-client relationships have largely escaped scrutiny by those who have recently been concerned with defining and investigating good care. However, the significance of relationships has attracted analytical attention in other contexts.
Psychodynamically informed renderings of therapeutic relationships construe these relationships as opportunities for self-understanding on the part of the client (2). To this end, therapist-client relationships are analyzed rather than enacted in psychotherapy. To foster such analysis, therapists work to maintain an interpersonally neutral stance and to create a clearly delimited time and space for interaction. Practitioners working in or influenced by this tradition are likely to minimize self-disclosure, limit contact to the office, and focus conversation consistently on the thoughts and feelings of the client.
Recent research on practitioner relationships for persons with serious mental illness has addressed treatment outcomes in relation to the therapeutic alliance. Therapeutic alliance is a concept derived from psychoanalysis and intended to represent the active ingredients in the therapist-client relationship. Developed for research on the effectiveness of psychotherapy, therapeutic alliance has also been termed "helping alliance" (3) and "working alliance" (4). The alliance has been measured in a variety of ways (5,6,7,8).
Most examinations of the impact of the therapeutic alliance on outcomes for persons with serious mental illness have used the Working Alliance Inventory (WAI). The WAI is a self-report questionnaire that assesses the quality of the alliance by measuring the bonds between the therapist and the client and the two parties' agreement on the goals and tasks of therapy (9). The results of the research have been mixed. The alliance has and has not been linked to clinical symptoms, hospitalizations, quality of life, rehabilitation outcomes, and social outcomes—for example, work, housing, and social contacts (10,11,12,13,14,15,16,17). An association between the alliance and client satisfaction has been identified in five studies (13,14,16,17,18).
The importance of understanding consumer perspectives is increasingly recognized by researchers studying quality of care for persons with serious mental illness (19,20,21,22). The opinions of service users with serious mental illness have been solicited for measure development projects (23,24,25), satisfaction studies (26), and evaluations of assertive community treatment (18). The question of how best to include user perspectives in services research has received some attention (27,28). Service users have also conducted their own research on quality of care (29).
The purpose of our qualitative interview study was to elicit and describe concepts of good mental health care in practitioner relationships from the perspectives of low-income persons with psychiatric disabilities and diagnoses of schizophrenia.
Our study was carried out as part of an investigation of the quality of Medicaid managed mental health care in Massachusetts (19). The participants were 51 adult Medicaid beneficiaries who had psychiatric disabilities and diagnoses of schizophrenia. They were randomly selected from the managed care study sample. The group ranged in age from 26 to 59 years; the mean age was 40.5 years. Thirty-nine participants (76 percent) were men. Eighteen (35 percent) were African American, 26 (51 percent) were white, and seven (14 percent) were Latino, principally but not exclusively Puerto Rican.
Data were generated through in-person, semistructured interviews that focused on interviewees' current relationships with individual mental health practitioners. Questions were designed to generate data that formed the basis of interpretations about participants' priorities for care. Each interview began by eliciting an inventory of the respondent's service providers. The interviewer then posed a standard question intended to be general and easy to answer: "What do you like most about [name of current practitioner]?" This question was followed up with probes designed to specify the initial response and shed light on its meaning and significance: "How does [he or she] show you that [reference to previous response—for example, 'he cares']?" "Why is that important?" Probes were selected to fit the conversation and to fully elaborate the initial response. In each interview, data were elicited for two practitioners with different relationships to the interviewee—for example, psychiatrist and case manager or psychiatrist and therapist. Practitioners to be discussed were selected by the interviewees.
Interviews were conducted in two-person teams. We have found that, when possible, adopting a team approach to qualitative interviewing with persons who are disabled by serious mental illness offers distinct advantages. First, having two interviewers present enhances understanding of what is being said. In reviewing completed interviews after each session, the interviewers can clarify and come to agreement on the meanings of responses. This approach serves as a reliability check. A team approach also allows the labor of questioning to be divided. The division of labor is especially useful for more challenging interviews, in which several approaches to presenting questions may be required to elicit high-quality data.
In this study, both members of the interview team posed initial and follow-up questions and took detailed notes on responses. The two sets of notes were subsequently integrated into a single comprehensive account. Interviews were not audiotaped, because some interviewees expressed reservations at that prospect.
Most often, interviews were conducted in the offices of the researchers. A few took place at group residences or social clubs. Interview sessions ranged from 45 minutes to two hours. Informed consent was obtained by using forms and procedures that had been approved by institutional review groups. Interviewees received $20 in return for their time and effort. The data were collected in 2001.
Data analysis consisted of the construction of descriptive categories, using grounded theory techniques (30,31). Grounded theory methods provide ways of conceptualizing qualitative data for description and, ultimately, explanation (30). Conceptualizations typically take the form of descriptive categories. The categories are generated by comparing specific sections of interview text and grouping similar sections until a cluster is apparent. Each cluster constitutes a theme. Themes are named, defined, and illustrated to form descriptive categories, such as the eight priority categories presented here. In analyses in which theory construction is the goal, categories are semantically linked to suggest explanatory propositions.
Eight priority categories generated by the analysis are presented below.
Getting "extra things" from practitioners was very meaningful for interviewees. Most often these were small things: a ride, a joke, a shred of personal information, coffee and conversation about something other than mental illness, even a simple greeting. The significance of these encounters lay in their "extraness." They seemed "beyond the call of duty," thus suspending, briefly, the constraints of formal client-practitioner roles. "That wasn't part of his job," or "She didn't have to do that," were heard repeatedly from interviewees touched by practitioners' willingness to "go out of their way" to be helpful.
Looking for common ground
Looking for common ground was a second theme to emerge from the interview data. To look for common ground is to emphasize similarities between oneself and one's service providers and to deemphasize the differences. Similarities cited were typically personal attributes—physical characteristics, religion, or race or ethnicity. Differences cited involved status and power. Claims to common ground also took the form of references to practitioners as peers or friends and to oneself as a "member of the treatment team."
Feeling known by practitioners was very highly valued. Conveying familiarity with the facts of a client's illness, personality, and preferences for care contributed to a sense of being known, as did acceptance of the client's point of view. Interviewees described the feeling of being known as stemming from long-term association or a practitioner's talent for conveying empathy. Listening promoted knowing; often listening sufficed in itself to give comfort. Participants offered clear advice for practitioners on how to listen: make eye contact, respond appropriately, and don't answer the telephone or talk to other people during appointments.
Much was made by interviewees of the experience of talking with practitioners. At least three dimensions of talk were distinguished as important: having the chance to talk, the sense of feeling able to talk freely, and how one was spoken to. Having the chance to talk was valued for its cathartic and problem-solving effects and as a means of reducing isolation. The importance of feeling able to speak freely appeared to lie in feeling exempt from negative consequences— for example, being seen as "crazy" and perhaps hospitalized. How one was spoken to referred to tones of voice that signaled not only respect but also concern, warmth, and genuine interest.
Interviewees articulated a clear desire to be dealt with as individuals—not stereotyped or reduced to "no more than" their illness. They objected to being "spoken slowly to" or "lumped together in groups." "Providers should recognize that everyone is different," one individual insisted, "and not prejudge. For example, don't assume I'm not educated because I'm black and mentally ill. People don't have to simplify their language when they talk to me. I may be mentally ill, but I'm not stupid!"
Interviewees also took strong exception to, as one person put it, being treated "like a baby." Feelings of being infantilized stemmed from day treatment programs with boring, demeaning activities or no activities at all; from "being told what to do"; and from being "dismissed" as "incompetent."
It follows that interviewees were highly enthusiastic about practitioners who, they felt, treated them like adults. Affirming capabilities; providing real choices; refraining from coercion; treating the reports, perceptions, and concerns of persons with serious mental illness as credible; and recognizing that such persons can have lives outside services were ways that practitioners treated service users as adults. One woman offered what she considered the highest praise for her psychiatrist when she declared with obvious feeling, "He asks personal questions. Like about my joining a church, whether I've found other new activities to be involved in, whether I've met someone. He makes me feel like I am somebody."
Practitioners who were seen as being available were greatly appreciated by interviewees. Availability meant being accessible—that is, easily reached. Timely responsiveness was also part of availability—that is, acting promptly to acknowledge requests even if they were not always fulfilled. "If I need them I can call, and I do call," one person explained. "I leave a message and they always call me back."
Flexibility in the scheduling of appointments was also valued by interviewees, who liked to be able to change appointment times when necessary, schedule appointments that would not conflict with other commitments, and "drop in" to see their therapists, case managers, or psychiatrists. "She arranges appointments so as not to conflict with my volunteer work," one interviewee informed us. "And if she can't accommodate that, she gives me a lot of notice." On dropping in, someone else noted with appreciation, "She sees me when I stop by without an appointment. I can drop by her office when I'm in the building, and she'll see me."
Interviewees wished to feel that they exercised a measure of control over their treatment. Having control could mean being consulted, for example, on what one wants from mental health care or on decisions about medications and doses. "He consults me on the dose of medication I want," explained one interviewee. "Treats me as the best person to know how I'm feeling."
Experiences of making requests and having them honored also conveyed a sense of control. Requests for changes in medications or dosages were the requests most frequently mentioned. Understanding medications—their intended effects and potential side effects—also fell under this heading. Psychiatrists who took the time and trouble to explain, as one person put it, "what they are doing and why they are doing it" were highly regarded. "He thinks a person should have a say in their treatment plan" was a strong endorsement for practitioners from study participants.
A number of observations emerge from these data. First is the salience of what might be termed a "connectedness theme" linking several of the priority categories. "Extra things," common ground, feeling known, talk, and feeling like "somebody" are all forms of connection in relationships with practitioners. These connections are not narrowly service focused but, rather, spill over the traditional boundaries of practitioner-client relationships. Nonclinical interactions with clients are typically frowned on for practitioners working in public mental health systems. Giving "extra things" is discouraged, as is talk that is not focused on the client's problems and might therefore distract from or otherwise undermine treatment. Yet it appears that such forms of connectedness are highly prized by service users. What might this mean?
Rather than an assault on professional boundaries, we may read the importance of connectedness as a bid for social inclusion. To invoke common ground with practitioners in the form of shared religion, race or ethnicity, or appearance is, in a simple and fundamental way, to stake claim to membership in social groups not defined by mental illness. Valuing "extra things" also underwrites this claim, as does the appreciation of "talk." Claiming and then winning recognition of connections based on commonality reduces social distance and increases integration for persons who are marginalized by psychiatric disabilities.
Strict enforcement of limits on practitioner-client interactions may derive from psychodynamic approaches to treatment and hence be intended as therapeutic. In contrast, clients appeared to experience such limits as alienating and diminishing—reminders, perhaps, of the very real sense in which they are alienated and diminished vis-à-vis society at-large.
The meaning and significance of professional boundaries may differ with the social position of the client. For low-income persons with psychiatric disabilities and diagnoses of schizophrenia, insistence on boundaries seems to work against the acknowledgment of common humanness. However, a willingness to set boundaries aside—through, for example, work perceived to be "off the clock" (unpublished manuscript, Hopper, 2003)—is seen as indicative of caring and thus of "good care."
The relative salience of connectedness and caring in these data contrasts with previous discussions of the perspectives of persons with serious mental illness on services, in which other concepts—for example, satisfaction, independence, empowerment, choice, recovery, and preferences—have typically predominated (32,33,34,35). Differences in the constituencies represented may account in part for this discrepancy. Too often, information about the service priorities—distinguished here from participation, perceptions, and preferences studies by nonconsumer researchers—of persons with serious mental illness has been solicited exclusively from nationally recognized advocates (32,36,37,38). Adding the voices of persons who are disadvantaged and disabled expands the scope of the debate.
The priority categories described here contrast clearly with the notion of therapeutic alliance. Therapeutic alliance refers to an emotional bond between the practitioner and client—expressed, for example, as trust, commitment, liking, or respect (39). However, differences in role, status, and power also exist and are central to the meaning of the relationship. In contrast, the priorities for practitioner relationships articulated by our study participants highlight opportunities for social solidarity. Differences in roles, status, and power recede into the background. Although much effort has been devoted to conceptualizing, operationalizing, and measuring the therapeutic alliance, existing formulations may not represent the meaning of practitioner relationships for poor people with serious mental illness.
Our study had at least two limitations. One is the fact that meaningful subgroup comparisons—between different types of practitioners, for example—were precluded by the size of the data set. Examination of the distribution of practitioner subgroups within priority categories would require more interview data in order for patterns of similarity and difference to emerge clearly. Subgroup analyses indicating whether specific categories are associated with particular practitioner roles are clearly an appropriate next step.
A second limitation of the study is that the analytical process did not include presenting the findings to interviewees to elicit their comments and feedback. The communication of findings, or interim results, to research participants for corroboration and criticism is termed a "member check" (40,41). Like triangulation, feedback is a way of bringing multiple perspectives to bear in data analysis to enhance the credibility of the findings (42). Triangulation and member checks should be part of future efforts to validate the categories described here.
A number of research questions follow from the results of this study. Do experiences of connectedness with practitioners translate into successes in building social connections outside the mental health system, and if so, how? What other forms of connectedness besides those described here might be important? Does connectedness vary across diagnostically distinct groups? Across culturally distinct groups? How should experiences of connectedness be reflected in research on outcomes of treatment and the design of new interventions?
Both quantitative formulations (such as staff-client ratios and numbers of encounters) and illness-centered formulations (such as therapeutic alliance) may miss much of what low-income service users with serious mental illness value about their relationships with practitioners. Particularly important for participants in this study were qualities of the relationship that helped them feel like "somebody"—to be recognized, talked to, and known on the common ground shared by those without disabling mental illness. Opportunities to counter feelings of vulnerability and alienation with a sense of connection based on shared humanness may be a high priority for services among poor people with psychiatric disabilities in the United States. Whether or not such opportunities can be made consistent with clinical priorities is a question worthy of debate.
Efforts to elicit user perspectives on quality of care should involve persons from a wide range of backgrounds, not just those who have recovered from mental illness, are no longer receiving services, have well-articulated positions they are eager to communicate, or are easy to find and work with. Other constituencies—persons with persisting disabilities, socioeconomic disadvantages, or uncooperative attitudes—can also be represented and have important contributions to make.
In the current rush to define quantifiable standards of quality and assemble an evidence base, we should not lose sight of the importance of interpersonal aspects of care. Relationships with practitioners that help clients feel cared about and connected to the social world address the suffering associated with mental illness and thus are essential to the meaning of good care.
This study was supported by grant R01-MH54076 from the National Institute of Mental Health. The contribution of Hannah Gilbert, M.A., is gratefully acknowledged.
Dr. Ware is affiliated with the departments of psychiatry and social medicine at Harvard Medical School, 641 Huntington Avenue, Second Floor, Boston, Massachusetts 02115 (e-mail, firstname.lastname@example.org). Ms. Tugenberg is with the department of social medicine and Dr. Dickey is with the department of psychiatry at Harvard Medical School.