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research-article2014

QHRXXX10.1177/1049732314547085Qualitative Health ResearchMoran et al.

Article

Psychiatrists’ Challenges in Considering Disclosure of Schizophrenia Diagnosis in Israel

Qualitative Health Research 2014, Vol. 24(10) 1368­–1380 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049732314547085 qhr.sagepub.com

Galia S. Moran1, Galit Oz1, and Orit Karnieli-Miller2

Abstract Doctors’ clear disclosure of diagnoses to patients is fundamental to patient autonomy and patient-centered approaches in health care. Although diagnosis disclosure is common in general health, it is less so in psychiatry. The aim of this study was to explore psychiatrists’ experiences of schizophrenia diagnosis disclosure to patients and/or family members. We conducted in-depth interviews with 14 psychiatrists from hospital and community settings in Israel and used a phenomenological framework to analyze the interviews. Overall, psychiatrists experienced disclosure as problematic, unproductive, and harmful. We identified 10 themes of psychiatrist experiences and concerns conceptualized under three domains: (a) characteristics of schizophrenia, (b) the doctor–patient/family relationship, and (c) psychiatrists’ difficulties with the disclosure task. We discuss the results suggesting a multilayered model of medical, relational, social, and personal disclosure challenges. We suggest that a constructive schizophrenia diagnosis disclosure needs to take into account psychiatrist- and patient-related factors and specify possible directions. Keywords communication, medical; disclosure; psychiatry; schizophrenia Contemporary trends in the general medical field have shifted to providing diagnostic and illness-related information, even in cases of severe and persistent diseases or conditions such as cancer, dementia, Alzheimer’s disease, and near-death experiences (Bamford et al., 2004; Holroyd, Turnbull, & Wolf, 2002; Jha, Tabet, & Orrell, 2001; Mitchell, 2007; Vassilas & Donaldson, 1998; Werner, Karnieli-Miller, & Eidelman, 2013). This shift has produced dramatic changes that are most notable in oncology, breaking the taboo on explicitly mentioning the word “cancer” to patients and introducing the routine practice of sharing diagnosis and treatment information (Fallowfield & Jenkins, 2004). This transformation has been supported by the development of skill and proficiency in breaking bad news to patients (Baile & Beale, 2003; Baile et al., 2000; Bucman, 1984; Chaplin, Lelliott, Quirk, & Seale, 2007; Cleary, Hunt, & Horsfall, 2009; Faulkner, 1998; Gallagher, Arber, Chaplin, & Quirk, 2010; Holroyd et al., 2002; Jha et al., 2001; KarnieliMiller, Werner, Aharon-Peretz, & Eidelman, 2007; Meitar, Karnieli-Miller, & Eidelman, 2009; Seeman, 2010; Vassilas & Donaldson). Although this change can be explained partly by the emergence of better treatments and possible cures for cancer, it is generally argued that candid revelation of diagnosis has a beneficial impact on patients irrespective

of the gravity of one’s condition. The sharing of a medical diagnosis (or diagnosis disclosure) is consistent with contemporary health paradigms and ethics (Buckman & Baile, 2007; Fallowfield & Jenkins, 2004; Karnieli-Miller et al., 2007; Mitchell, 2007; Seeman, 2010). Diagnosis disclosure represents a shift from a traditional paternalistic approach to an era of shared decision making centered on open dialogue and patients’ rights. The latter approach relies heavily on citizens’-rights principles. This includes recognizing patients’ basic rights to knowledge about their health status, information about diagnosis, and treatment options. In addition, central to this approach is the notion of patients as active partners in their treatment process, taking into account their perceptions and preferences (Charles, Gafni, & Whelan, 1997; Emanuel & Emanuel, 1992; Laugharne & Priebe, 2006). Thus, the growing assumption is that doctors have a duty to give patients clear information about their illness.

1

Health, University of Haifa, Haifa, Israel Tel-Aviv University, Tel Aviv, Israel

2

Corresponding Author: Orit Karnieli-Miller, Department of Medical Education, Sackler School of Medicine, Tel Aviv University, Tel Aviv 69778, Israel. Email: [email protected]

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Moran et al. Although doctors might still have a degree of freedom to decide how much information to give and when to give it, they can no longer presume that patients do not want to know simply because they have not asked (Hébert, Hoffmaster, Glass, & Singer, 1997). In practical terms, this shift is claimed to benefit patients because it allows wider access to knowledge, resources, treatments, and opportunities to coalesce with other patients and benefit from self-help resources (Baile & Beale, 2003; Baile et al., 2000; Buckman & Baile, 2007; Fallowfield & Jenkins, 2004; Karnieli-Miller et al., 2007; Mitchell, 2007; Seeman, 2010). Nevertheless, psychiatric diagnosis disclosure remains uncommon and controversial compared to disclosure of physical illnesses (Atkinson, 1989; Cleary et al., 2009; Rose & Thornicroft, 2010). Overall, studies have highlighted a tendency among psychiatrists either to delay or not to disclose psychiatric disorder diagnoses, especially in the case of schizophrenia (Atkinson, 1989; Clafferty, McCabe, & Brown, 2001; Cleary et al., 2009; McDonald-Scott, Machizawa, & Satoh, 1992; Shergill, Barker, & Greenberg, 1998). For example, Shergill et al. found that among 126 psychiatric patients, more than half had not been told about their diagnosis. In a cross-cultural study, McDonald-Scott et al. identified differences in disclosure rates of schizophrenia and borderline personality disorder. They also identified significant cultural differences in the practice of schizophrenia diagnosis disclosure in the United States and Japan (70% and 30%, respectively). Later findings from a study in Scotland estimated that over half of psychiatrists (59%) provided a diagnosis during the first illness episode (Clafferty et al.). Proponents of nondisclosure have provided diagnostic, moral, and practical arguments against sharing diagnostic information. First, because it is difficult to diagnose schizophrenia, psychiatrists tend to be hesitant about the definiteness of diagnosis (Atkinson, 1989; Bora, Yucel, Fornito, Berk, & Pantelis, 2008; Bracken & Thomas, 2000; Clafferty et al., 2001; Gallagher et al., 2010; Rose & Thornicroft, 2010; Shergill et al., 1989), which involve a lengthy process and the challenge of potential differential diagnosis. In addition, the psychiatric diagnostic system is limited and lacks an identified etiology. Thus, schizophrenia is often not diagnosed on the basis of a single visit, with no prior information. This is a disadvantage when compared to diagnosis of other health conditions, which can be accurately identified using biological markers. On this basis, nondisclosure can be justified as a careful practice that prevents potential misinformation of what might later turn out to be a diagnostic error (Clafferty et al.; Cleary et al.). In addition, psychiatrists argue that disclosing a schizophrenia diagnosis will harm the patient’s morale.

The patient’s experience of psychosis can be a traumatic event in and of itself. Concerns include the fear that patients will respond with a sense of despair and lowered self-esteem, and in some cases might exhibit a negative symptomatic reaction or even a suicidal response (Clafferty et al., 2001; Cleary et al., 2009). Narrative reviews and simulated studies reveal that this sense of concern is related to psychiatrists’ lack of ability to “cure” schizophrenia, coupled with an attempt to protect patients from receiving distressing news (Cleary et al.; Mitchell, 2007; Rimondini et al., 2006). Furthermore, psychiatrists tend to disclose information to family members more often than to patients themselves. This common practice implies that psychiatrists view patients as incapable of handling knowledge about their own health information. It also reveals, however, that psychiatrists perceive family members as a major source of support for the patient and as better able to cope with receiving the diagnosis (Atkinson, 1989; Dale, Tadros, Adams, & Deshpande, 2004; Lauber & Rossler, 2003; Mitchell, 2007). Finally, delivering a diagnosis is viewed as risky, making patients increasingly vulnerable to issues such as stigma and labeling (Rose & Thornicroft, 2010). It might incur negative consequences from services or family members, regardless of whether the patients themselves even know about the diagnosis (Bracken & Thomas, 2000; Rose & Thornicroft; Shergill et al., 1998). In contrast, proponents of disclosure focus on patients’ expectations for information about their condition, on truth telling in professional encounters (Hébert et al., 1997; Kanaan, 2009; Rose & Thornicroft, 2010; Van Bokhoven et al., 2006), and the possible benefits of receiving this information. The benefits of disclosure include a positive effect on help-seeking behaviors (Reavley & Jorm, 2011; Yap, Reavley, & Jorm, 2013), relief from worry that the problem was some other condition (Rose & Thornicroft), and allowing patients and families to identify with others bearing similar conditions, breaking isolation and allowing access to resources (Clafferty et al., 2001; Cleary et al., 2009). Nondisclosure of information or disclosure only to a family member, which are perceived as contrary to contemporary patient-centered approaches to health care, might lead to a disempowering experience for patients. Other benefits attributed to diagnosis disclosure include the idea that it can allow clearer doctor−patient communication and enhanced management of symptoms and medication (Atkinson, 1989; Clafferty et al., 2001; Cleary et al., 2009; Rose & Thornicroft, 2010; Salyers, Godfrey, Mueser, & Labriola, 2007; Yap et al., 2003). It can serve to target symptom management directly and to assist psychological coping with the

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psychiatric condition. Having an illness with a name that directly addresses experiences of psychiatric symptoms can help patients cope with shame, guilt, fear, and/ or traumatic responses related to their mental illness (Atkinson, 1989; Clafferty et al., 2001). Finally, it is assumed that the patient will eventually find out about the diagnosis from other sources, potentially creating a breach of trust in the relationship with the psychiatrist (Clafferty et al.). The arguments regarding possible benefits of diagnosis disclosure for self-care tie into the emerging selfdetermined recovery and rehabilitation approach, which emphasizes the reclaiming of meaningful life in one’s natural community (Anthony, 1993; Farkas & Anthony, 2010; Moran & Nemec, 2013; Moran, Russinova, Yim, & Sprauge, 2012; Slade, 2009). The notion of people taking charge of their life in health and illness is central to the recovery movement. It can be argued that access to knowledge on diagnosis is vital to the recovery process, because it allows freedom of thought and action regarding one’s condition. Overall, diagnosis disclosure has been investigated only to a limited extent in psychiatry, with arguments both for and against (Cleary et al., 2009; Read, Haslam, Sayce & Davies, 2006; Rose & Thornicroft, 2010; Seeman, 2010). Given the complex question of diagnosis disclosure in schizophrenia, research on this topic in psychiatry is warranted; it is especially required in light of current approaches regarding patients’ rights to knowledge in health care and self-determined mental health recovery. In the present study, we attempted to address this knowledge gap by conducting an in-depth exploration of psychiatrists’ experiences and considerations with regard to the (non)disclosure of schizophrenia diagnosis to patients and family members. We were interested in learning about psychiatrists’ views and experiences, to gain a deeper understanding of current challenges and potential obstacles.

Method Study Design This study was guided by a phenomenological framework, emphasizing the exploration of subjective experiences toward understanding the meaning, interpretation, and personal significance that participants draw from a particular phenomenon of interest (Creswell, Hanson, Plano Clark, & Morales, 2007; Patton, 1999). We used in-depth semistructured interviews that allowed access to rich subjective narratives. We wished to understand specifically the essence of psychiatrists’ experiences, perceptions, and opinions regarding disclosing schizophrenia diagnosis to patients and family members.

Recruitment and Study Procedure The second author, who works in a psychiatric vocational service, had access to psychiatrists with relevant experience, and recruited potential respondents using convenience sampling (Patton, 1999). Participants came from diverse types of services—an outpatient setting in a general hospital, a psychiatric hospital, and a community mental health center. The second author contacted them either directly or through referrals by the district rehabilitation coordinator and the director of the psychiatric hospital, via phone calls or through personal meetings in their work place. She described the study rationale and procedure, assured them of anonymity and confidentiality, and of their right to discontinue the interview at any stage. She then provided informed consent forms for those willing to participate. She conducted the interviews in psychiatrists’ offices, except one which took place in the hospital cafeteria. The Faculty of Social Welfare and Health Sciences Ethics Committee at the University of Haifa and the Helsinki Ethics Committee at the psychiatric hospital approved the study. We originally recruited 18 psychiatrists, but in the initial phone conversation, 3 of them (2 working in the psychiatric hospital and 1 in a community setting) chose not to participate in the study. They claimed to rarely (if at all) disclose diagnoses in their practice, and believed that they would not have much to share about the topic. These responses led us to understand the need to reframe the focus of the presentation and the research—from disclosure of schizophrenia to the dilemmas and personal experiences concerning disclosure and nondisclosure. Following this, 15 participants provided full accounts of their views and experiences. We conducted a single interview, in Hebrew, with each participant. The interviews lasted 50 minutes on average (range = .5 to 1.25 hours). Theoretical saturation was reached with 15 psychiatrists, when the interviews yielded no new knowledge related to the research question; i.e., described no new experiences or expressed no new opinions about diagnosis disclosure (Moustakas, 1994). We excluded one interview from the final analysis because of technical problems in recording, allowing access to 14 psychiatrists’ rich personal accounts of diagnosis disclosure practices and considerations. The 14 participants’ ages ranged from 37 to 59 years (M = 47, SD = 8.4); they were 6 women and 8 men. Their level of education ranged from 16 to 20 years (M = 18, SD = 1.1), and more than half had been trained as psychiatrists outside of Israel (n = 8, 57%)—in Russia, Argentina, Hungary, and Romania. Number of years working in the profession ranged from 5 to 27 (M = 18, SD = 7.9). Three worked in community mental health centers, 3 in an outpatient unit of a small rural psychiatric hospital, and 8 in a central psychiatric hospital in a major

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Moran et al. city in the north of Israel. These data and additional professional demographic characteristics are summarized in Supplemental Table S1 (available online at qhr.sagepub. com/supplemental).

Analysis Data Collection, Analysis, and Trustworthiness (Reliability and Credibility) We conducted semistructured interviews to learn about psychiatrists’ opinions and experiences regarding disclosing schizophrenia diagnosis. The interview guide was based on the literature and a previous interview guide developed by the third author for a study on diagnosis disclosure in other health areas (Karnieli-Miller, 2006). The second author conducted the interviews. The openended questions focused on psychiatrists’ lived experience concerning diagnosis disclosure (e.g., “Please tell me about the last time you gave a schizophrenia diagnosis to a patient or patient’s family member”). We also asked participants to reflect on their general information-providing habits and considerations (e.g., “Please tell me what guides your decisions about schizophrenia diagnosis disclosure”). In addition, questions addressed contextual aspects, such as how the degree of acquaintance with patients and the telling about diagnoses affected psychiatrists’ feelings and decisions. We audio-recorded and transcribed the interviews verbatim. The analysis was guided by a commitment to understand participants’ subjective points of view and experiences. It involved the following stages: familiarization with each interview transcript by reading them several times independently, and then identifying and coding content related to diagnosis disclosure under different themes. These included any references to experiences, feelings, and thoughts about diagnosis disclosure. After the second author reviewed the first five interviews, she and the third author met to discuss the significant content coded in each interview. Here, we conducted a comparison of the different themes and clustered similar content into larger shared categories. Next, we reread the first five interviews to ascertain that the clustering was thematically relevant, and refined this where necessary. The interview data showed that psychiatrists did not regularly disclose the diagnosis, and therefore subsequent interviews focused mainly on understanding the experiences, dilemmas, concerns, and considerations of nondisclosure. We analyzed the rest of the interviews in a similar manner, using the initial set of themes as a basis for further analysis. This iterative process resulted in a conceptualization of emerging themes under overarching themes that represented distinct experiences with regard to schizophrenia disclosure practices (Creswell et al., 2007; Miles

& Huberman, 1994; Strauss & Corbin, 1990). Finally, the first author cross-validated the thematic analyses. She reviewed specific quotes that represented themes and discussed their conceptual thematic propositions with the second and third authors. As a result, some quotes were shifted to represent different themes, making an additional contribution to conceptualizing the thematic model.

Reflexive Process The primary analyst of the data was the second author, who had conducted the interviews and analyzed the transcriptions. The third author, an expert in qualitative analytic methodologies and breaking bad news in health care, accompanied the process and provided supervision. To ensure reliability and credibility in ascertaining psychiatrists’ subjective views, the third author worked closely with the second author before and during analysis. She facilitated the second author in a guided reflective process about prior knowledge, perspectives, and experience to discern between the study participants’ perspectives and the researcher’s personal point of view. During this process, the second author became sensitive to her biases when interpreting interview texts. For example, her initial reaction of anger toward psychiatrists for not suggesting a diagnosis to patients inhibited her ability to learn and see their perspective, reasoning, and experiences. This process also influenced the modification of the interview guide and how to listen to psychiatrists. Thus, the reflexive conversations allowed better clarification of psychiatrists’ views and the adoption of a more open standpoint of “being with” the participants. All these in turn augmented the quality of the analysis (Lincoln & Guba, 1985).

Results We identified 10 subthemes that reflected psychiatrists’ different descriptions of experiences and opinions that led them to delay or to not disclose a diagnosis to patients and/or families. We found that these were best understood in the context of three overarching themes of concerns related to (a) the nature of the illness—medical perspective, which related to unique diagnostic, clinical, and treatment aspects; (b) the doctor−patient (family) relationship and needs, therapeutic alliance, and treatment adherence; and (c) psychiatrists’ difficulties in performing the task of diagnosis disclosure, which involved emotional challenges in breaking bad news and fear of being verbally and/or physically assaulted by patients or their families. In Table 1, each theme and related subthemes are described and interpreted for their meaning from psychiatrists’ perspectives.

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Table 1.  Themes and Subthemes of Psychiatrists’ Considerations for Nondisclosure of a Schizophrenia Diagnosis. Theme The nature of the illness— medical perspective      The doctor−patient (family) relationship and needs      

Psychiatrists’ difficulties with the task of disclosure

Subthemes Diagnosis uncertainty Unclear prognosis Contraindication in acute states Contraindication to treatment adherence Harm to the doctor−patient therapeutic relationship Fear of demoralizing/dashing hopes Consideration of families’ and patients’ lack of interest in hearing about a diagnosis Fear of negative family responses toward the patient Emotional challenge Fear for personal safety

You can detect a psychotic event of some sort, but that still does not indicate an illness; you need to identify the characteristics of this psychotic event, you want to be sure to detect a [disease] process, to see what happens next. I have cases where people put themselves back together, for example with cases of first-episode of drugs . . . so you can’t know if it is just the drugs or an illness.

These psychiatrists felt unsure about disclosure, arguing that behavioral signs and psychotic symptoms could not serve as hard evidence and might change over time. This led to a delay in disclosure until the source of this behavior was identified. Unclear prognosis.  Even when psychiatrists were certain about the diagnosis, they were concerned about schizophrenia manifesting highly heterogeneous, unpredictable, and individual trajectories, which hindered their provision of a clear and helpful prognosis for their patients. They focused on patients’ need for clarity: I think it is sometimes easier for a person to know [about a diagnosis] when there is a clear ending. . . . When you break the news [about a schizophrenia diagnosis] . . . you don’t have much to say about what is going to happen.

The Nature of the Illness—Medical Perspective Psychiatrists referred to medical aspects and conditions that hindered them from disclosing a diagnosis to their patients. These pointed to challenges in the process of diagnosis and/or providing a prognosis, and expressed hesitation to disclose to patients with active symptoms. Diagnosis uncertainty.  Psychiatrists perceived the determination of a complete and final diagnosis of schizophrenia as essentially different from objective medical procedures used to diagnose other physical illnesses, such as diabetes or heart conditions. One participant described this as follows: Here, we are dealing with a diagnosis that involves a process. . . . A person does not come for screening for a blood test, whatever, and you tell them, okay, we found you have. . . . [Diagnosing] schizophrenia has [more of] the nature of a process.

Psychiatrists found schizophrenia diagnosis to be a slow, doubtful process, which requires the passage of time to be fully ascertained: “You don’t know that a person is suffering from schizophrenia until . . . a relatively advanced stage.” They voiced concerns about differential diagnoses; for example, the need to distinguish schizophrenia from psychosis induced by drugs or by organic causes such as brain damage. These concerns led to their preference to wait with the disclosure:

Participants believed that providing a diagnosis without information and knowledge about its implications for the future was futile and burdensome. They emphasized this lack of certainty by comparing it to cases in which doctors have greater predictability about a future course of an illness: What will happen next? You keep in your mind that this [schizophrenia] is not one disease, it is not the heart muscle . . . you know about the condition of his heart catheter and you can say how much longer the person will hold out.

The lack of firm knowledge and clarity about the future elicited a sense of discomfort interpreted by psychiatrists as a disincentive for disclosure. One exception was a participant who expressed a positive perspective to this lack of ability to provide a clear prognosis: You don’t know what will happen; maybe tomorrow he will take the initiative to go to . . . an occupational center, and a year later, he will find himself in a sheltered workshop, and after another year, suddenly [working] in the free market, and suddenly he will get married, and the person is flourishing because he somehow succeeded. . . . It looks totally different.

Contraindication in acute states.  In addition to lack of certainty and clarity about diagnosis and prognosis, situations in which patients exhibited active psychotic

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Moran et al. symptoms and/or other acute clinical states hindered psychiatrists from giving a diagnosis. A variety of such clinical states was noted, including psychotic conditions, irritability, severe thought process malfunctioning, paranoid thinking, and being at risk for self-harm or for harming others. Psychiatrists confronting these states were reluctant to provide diagnosis and information when they sensed that patients were not available to listen, or to comprehend the diagnosis and its meaning: Last time I saw him [the patient], he still had fears . . . and before that, he had suicidal ideation from his psychotic state. . . . If the person is in an active psychotic state and is sometimes dangerous, then it is not the time to talk about this illness . . . he won’t listen to me . . . also if he has fears, and is currently afraid of people, hearing voices, or preoccupied with [delusional] thoughts.

This psychiatrist expressed the concern that sharing the information with the patient would be futile and even counterproductive: To deal with a diagnosis, a person needs some level of organization in terms of thought and processing the information. So someone who is in the beginning stages of psychosis with thought disorders . . . and might be stressed . . . and you tell him . . . can lead to some hostility in the end.

This quote implies psychiatrists’ various concerns for patients, themselves, and the relationship. These and other concerns and risks are mentioned in the next sections. Contraindication to treatment adherence. Regardless of patients’ clinical status, psychiatrists were worried that diagnosis disclosure might put treatment adherence or the continuation of the relationship at risk. They believed that short- and long-term engagement in treatment could be harmed in multiple ways: “It can only do harm . . . lack of collaboration also in terms of medication.” “It can cause difficulties for the continuation of treatment later. . . . It can create antagonism toward the treatment system, which might linger for a long time.” “There are such patients. . . . There is no point in telling them; they won’t listen, and will not come back for checkups, and might even totally cut themselves off, so it’s problematic.” Thus, psychiatrists refrained from disclosure for fear of discontinuation of medical treatment and harm to the doctor−patient relationship.

The Doctor–Patient/Family Relationship and Needs As hinted at above, psychiatrists were concerned that disclosing a diagnosis of schizophrenia might harm their

relationship with patients and family members in different ways. Harm to the therapeutic doctor–patient relationship. Some of the psychiatrists were afraid that giving a diagnosis might harm the establishment of a positive and trusting relationship with patients: There is something very, very loaded about it [giving a diagnosis]. . . . You want to avoid argument. . . . You think about the relationship; is it [the diagnosis disclosure] really essential? And you want to turn the patient into a friend, not a foe.

This quote illustrates the psychiatrists’ notion that developing trust and engagement in treatment contradicts the sharing of the news about the nature of the disorder. Moreover, psychiatrists were afraid that diagnosis disclosure would inevitably turn the relationship from friendship to enmity. This is also demonstrated in the following comments: The first thing that interests me is to establish some therapeutic alliance. And a therapeutic alliance does not come from giving a name to a disease, but rather by trying to understand what bothers the person, to engage him to solve the problem. . . . I try to focus on . . . his strengths, and healthy aspects . . . to build trust.

For participants, the act of diagnosis disclosure is narrowed down to naming a disease, implying the focus on negative aspects, as opposed to other actions of engagement, focusing on strength and health. Even if a positive rapport has been established, psychiatrists refrained from sharing diagnostic information: “She is collaborative and is willing to go to individual therapy as well . . . but [I] don’t dare tell her she has schizophrenia, because that is when the relationship with her will come to an immediate end.” Thus, psychiatrists viewed the sharing of diagnostic news both earlier and later in the therapeutic relationship as inevitably generating nonconstructive therapeutic results and negative treatment outcomes. Fear of demoralizing/dashing hopes.  An additional concern that drove psychiatrists to postpone or avoid diagnosis disclosure was fear of demoralizing patients. Many psychiatrists addressed schizophrenia labeling as conveying a sense of doom. One participant, who worked in a psychiatric hospital, noted, “We would try not to use labels from the beginning; we tried to wait, actually . . . not to hurry to make bombastic diagnoses.” Psychiatrists’ negative interpretation of schizophrenia as “bombastic” was demonstrated further in their comparisons made in favor of people with other life-threatening or

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disabling conditions: “I think it’s much more complicated . . . to tell someone that he has schizophrenia than to tell someone that he has cancer and has three months left to live.” The following quote also illustrates this attitude: “Saying ‘you have diabetes’ is not the same as ‘look . . . you are schizophrenic’ . . . or, in simpler words, ‘Buddy, you are sick in your mind.’” It is noteworthy that this quote accentuates this downward comparison by describing diabetes as a disease that one “has” and will deal with vs. schizophrenia, which is an illness that embodies the whole person (“you are” schizophrenic). Thus, psychiatrists perceived conveying news about cancer and even imminent death as easier than breaking news about schizophrenia. For them, schizophrenia disclosure meant breaking the worst possible news about a medical condition, leading to hopelessness and demoralization. Consideration of families’ and patients’ lack of interest in hearing about a diagnosis.  Beyond psychiatrists’ personal sensitivity to the negative social connotation of the schizophrenia label, psychiatrists believed that patients and families were not interested in knowing the diagnosis. They described this lack of interest as ranging from mere lack of curiosity to active avoidance of hearing or accepting a schizophrenia diagnosis. One psychiatrist said, “I think that it really doesn’t matter to most patients; it doesn’t mean anything to them, or they don’t want to know.” Another noted, Patients don’t have a problem getting the information [from the discharge report from the hospital]; however, it has never yet happened to me that someone was discharged and asked, “Okay, so what do I have?” I scarcely remember a situation like this.

Others emphasized that patients and families explicitly “want to hear that it is not schizophrenia.” They either rejected the diagnosis or hoped to receive a different one. Psychiatrists experienced patients and families as either using and/or insisting on a different diagnosis, despite clear indications about a schizophrenic condition (e.g., psychiatric hospitalizations and other accumulating medical and clinical evidence): The mother of a woman who has been a patient of mine for many years is very involved in the treatment, and to this day she is convinced that her daughter does not have schizophrenia, no matter how many times it’s been said. . . . And we both agree to differ about the diagnosis. . . . For her, it’s not an illness, but more of a special-needs case.

The quote above illustrates that the psychiatrist viewed the mother as someone who wished not to acknowledge the diagnosis of schizophrenia, and respected that. The next two quotes further demonstrate this:

Many patients and family members prefer to think someone has a neurological illness . . . that might be even worse than schizophrenia, as long as they don’t say that it is mental. . . . Socially and philosophically, you often see this in the person, the way they talk, their hope that the doctor will find that it’s something neurological in the brain, and not a mental illness. Often, families come with the understanding that their child is suffering from some serious disease. . . . They present the problems of concentration, anxiety, depression, some malfunctioning at school. . . . It’s often hard when you have to say that the child needs medication for [hearing] voices, lack of concentration, and that he has delusions. . . . Families respond with disbelief, and seek further consultation, and these are difficult situations.

The psychiatrists were frustrated with the sense of discrepancy between their understanding of the patient’s condition and the family’s unwillingness to acknowledge that state. This was especially evident in the case of children, in which psychiatrists felt that families expected to hear of a more common and socially accepted condition, such as attention deficit hyperactivity disorder. In these instances, psychiatrists often decided to take more of a “go-with-the-patient/family” approach, and avoided explicit discussion of the diagnosis. They found this to be helpful in maintaining the doctor−patient/family relationship. Fear of negative family responses toward the patient. In addition to families’ preference not to know, psychiatrists sometimes feared that family members would use the diagnosis against patients. In contrast to more modern, secular patients who seek help, psychiatrists described negative experiences with patients from traditional cultural backgrounds, from Muslim and Jewish families originating in Arab countries. Psychiatrists observed that their social norms conveyed a stigmatic and rejecting approach toward persons with schizophrenia. They experienced a “negative” and “accusing” approach from these patients’ families, “blaming the patient” for having a psychiatric condition. Thus, they feared that diagnosis disclosure might reduce the chances that they would support their loved one with the disorder: In the Arab community there is an interesting phenomenon. The family first rally around the patient; they sacrifice a lot, dramatically resolving to support him always. . . . The moment they see it is a chronic issue, and there is no turning back, they totally desert him. There is no one there. . . . They decide that he is majnoon [crazy (Arabic)]. There is nothing left to do. As long as there is hope, they will make the effort and help out here and there . . . and it is more or less the same pattern with Jews who came from Arab countries. . . . Among those originating in the United States or Europe, it’s different, there is perhaps more awareness. . . . So when I

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Moran et al. talk to those from the Arab sector, I try to give more information about prognosis and recovery or remission; [that is], I try to say that it is not a death sentence . . . [and less about] . . . side effects of the medication.

Their concern for the patient, and fear of the family abandoning the patient, led the psychiatrists’ decision to share specific information with the family (e.g., recovery) and refrain from referring directly to the diagnosis itself—schizophrenia, as well as refraining to address the medication and potential side effects. They did not address the aspect of family/patient education about mental illness in the treatment process. They saw the patients’ best interest as that of receiving support and care, and as the highest priority, which led them to focus on specific aspects at the expense of others. In addition, psychiatrists believed that sharing diagnostic information with family members from traditional backgrounds might harm the patient outside the treatment context: When there is some secondary benefit . . . [e.g.,] a divorce process where it could be used in court . . . a monetary issue . . . where medical information may be used against the patient. . . . If I see that the information I give to family members might be used for things that are far from support, help, or treatment, for some kind of secondary benefit that is irrelevant to the issue of treating the illness, I prefer not to provide any information.

Psychiatrists prioritized support, help, and treatment of patients. Anything that they believed might jeopardize these priorities led them to avoid providing this information.

Psychiatrists’ Difficulties With the Task of Disclosure Psychiatrists experienced diagnosis disclosure as emotionally taxing and involving the risk of provoking negative and sometimes aggressive responses toward them. An emotional challenge.  Psychiatrists experienced diagnosis disclosure as charged with negative emotions, different from their emotional experiences while performing other routine work tasks (e.g., follow up, prescribing medication): I remember my response when I saw someone who was crazy, and it was obvious to me that he was beginning a “schizophrenic career” and these were early days . . . and he and his family didn’t understand what it was. It was very hard; I sat in the car and cried. Usually, you see a patient, he comes and goes, you renew the prescription . . . you’re in a kind of active mode, doing; here, it is annunciation.

This psychiatrist sensed the discrepancy between her knowledge of the patient’s condition and the family and patient’s complete lack of awareness. This elicited further emotional stress on her part regarding diagnostic disclosure: “You deliver a very difficult announcement, I think—a very hard one. I feel very uncomfortable; it is never pleasant. It is very hard, always very hard. I take it hard.” Psychiatrists felt pulled into the role of the bearer of very bad news: “Schizophrenia is the worst, worst, worst, most unpleasant thing you can hear from a psychiatrist.” They felt that breaking the news would inevitably lead to a negative response toward them, especially if they were the first psychiatrist to share the news with the patient or family: The first doctor will say he is psychotic. . . . [Then the patient and family will] go to the next [doctor], and [with] the third and the fourth, there is more of an acceptance. . . . I have noticed that anger will be vented toward the first one to say it.

Fear for personal safety.  Finally, in certain situations, in addition to the emotional toll and negative emotional reaction, several psychiatrists anticipated hostile physical responses after sharing the diagnosis. This concern led them to try and refrain from doing so: There is a good chance that the doctor will get hit right back in his face. If the doctor has some common sense, he can say something like, “Look, I haven’t reached a conclusion.” Many doctors are afraid to voice the diagnosis because of what . . . he can do in my room. . . . He will start to lose control here in the room.

This quote implies how “common sense” would lead to “using” the ambiguity of the illness to avoid disclosing information. Another psychiatrist said, “I [have taken care] not to bring myself to a situation in which I am announcing [the diagnosis] to a family that would attack me.” Both quotes express the need for psychiatrists to protect themselves from assault by patients or their family members, and this was accomplished by avoiding disclosure.

Discussion We used in-depth interviews to explore the experiences and considerations of psychiatrists in Israel about disclosure of a schizophrenia diagnosis to patients and family members. The findings manifested a striking breadth of negative experiences and perceptions regarding disclosure that resulted in psychiatrists’ conspicuous tendency to refrain from disclosure. The considerations that led to avoidance or delay of disclosure were classified under three overarching

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themes: concerns related to the nature of the schizophrenia disorder—diagnostic, clinical, and treatment aspects that hinder disclosure; concerns about the consequences of disclosure for the doctor−patient (and/or family) relationship and preferences, and psychiatrists’ personal concerns; and reservations about performing the diagnosis disclosure task. This overall tendency not to share the news was emphasized by the indifference to the topic expressed by 3 additional psychiatrists, who did not consent to be interviewed because they considered diagnosis disclosure to be irrelevant to them. Surprisingly, in the study sample, none of the participants mentioned the positive considerations of disclosure. In an era in which the provision of information, truth telling, and patient autonomy are central to general health care practices, this is disconcerting (Buckman & Baile, 2007; Fallowfield & Jenkins, 2004; Laugharne & Priebe, 2006; Seeman, 2010). It is even more disturbing in light of contemporary approaches designed to empower mental health patients to support their recovery and selfdetermined rehabilitation (Anthony, 1993; Farkas & Anthony, 2010; Moran et al., 2013). Given that disclosure in mental health can no longer be overlooked, this study adds rich personal accounts and contributes to the existing literature by illuminating the complexity of disclosure practice which elicits dilemmas and a myriad of considerations. These findings are in line with a previous study adressing diagnosis avoidance in psychiatry (Rose & Thornicroft, 2010). We found that the psychiatrists in this study ascribed nonconstructive meanings to disclosure to patients and families, and tended to avoid it. Hence, we suggest a multilayered model of challenges explaining psychiatrists’ specific areas of difficulty in this regard. We believe that the model can be relevant in the broader international mental health context, given psychiatrists’ and patients’ multicultural backgrounds, which represent the contemporary multicultural global world. In addition, the current Israeli psychiatric system generally keeps abreast of current mental health care agendas around the world. The model proposes an extension from psychiatrists’ subjective views to a conceptualization of areas for further exploration when facing disclosure of schizophrenia. It includes the following challenges: (a) the medical characteristics of the disorder, (b) the psychiatrist−patient relationship, (c) patients and psychiatrists’ sociocultural aspects, and (d) the psychiatrist’s emotional state. The medical challenge layer highlights psychiatrists’ experience of schizophrenia diagnosis as a lengthy, uncertain journey which rendered them unable to predict any specific (positive vs. negative) disease course; as a result, they delayed or avoided disclosure. Thus, even though uncertainty might involve the option of a more

positive outlook, the vast majority of study participants interpreted it negatively. Previous studies highlighted less diagnosis disclosure regarding indiscriminate disease characteristics than other chronic physical illnesses (Cleary et al., 2009; Gallagher et al., 2010; Mitchell, 2007; Seeman, 2010). The present study highlights a plethora of clinical states that generate doubt about the usefulness of disclosure, including a lack of judgment, the incapacity to understand the meaning of the diagnosis, psychotic features that render patients highly confused, irritability, paranoia, and/or referential delusion. Psychiatrists felt apprehensive about disclosing to patients in these states for fear of provoking potential conflict, suspicion, and/or the risk of attack or patient self-harm. Such characteristics point to greater similarities between schizophrenia and other neurological conditions such as dementia, which affect cognitive and affective states (Karnieli-Miller et al., 2007; Mitchell). Psychiatrists focused on treating the acute stage, when sharing the news seemed futile and even harmful. The next layer of challenges involves an aspect less emphasized in the literature: the dilemma of disclosure as a threat to establishing a positive therapeutic relationship. Maintaining an enduring therapeutic relationship and successful treatment was contrasted with providing accurate diagnosis information. Psychiatrists anticipated, believed, and feared that diagnosis disclosure would result in diminishment of hope, breaking of trust, and treatment dropout. Early disclosure especially was expected to elicit negative responses threatening immediate and long-term relationship building and treatment outcomes. This intense fear took on the form of a dichotomy between diagnosis disclosure and establishing a therapeutic relationship, expressed as turning a “friend into a foe,” or a “dead-end street.” Even after a therapeutic relationship was established, psychiatrists perceived providing information to be irrelevant and disclosure as dangerous and problematic; thus, from their perspective, the end goal involved achieving compliance (Meitar et al., 2009) rather than building a trusting relationship that could “deal” with difficult news about diagnosis. The role of the therapeutic relationship in psychiatric settings is becoming increasingly recognized (McGuireSnieckus, McCabe, Catty, Hansson, & Priebe, 2007). This study adds to this body of knowledge by tying psychiatrists’ nondisclosure of diagnosis to their concerns and needs for psychiatrist−patient relationship building. The nonconstructive meanings ascribed to disclosure caused psychiatrists to disregard the potentially positive aspects of sharing medical information with patients and the ethical (and legal) commitment to do so. Similar to other health conditions, it seems that when disclosure is not perceived as beneficial in any way, the chances of it

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Moran et al. occurring are low (see also Karnieli-Miller et al., 2007). However, patients do expect to receive a diagnosis (Seeman, 2010). Moreover, when in an optimal doctor−patient relationship, they prefer to receive “bad news” (Gallagher et al., 2010). For example, disclosure can facilitate discussions about various ethical, practical, and legal implications, such as how informed consent is managed, how to explain why one is prescribed certain medications to others, and/or the impact of nondisclosure on the establishment of an honest doctor−patient relationship. The next layer of challenge in the model involves influences of social views and cultural backgrounds regarding the practice of disclosure. Patients’ sociocultural backgrounds influenced the degree to which psychiatrists tended to disclose. This was attributed to expectations of openness (or lack thereof) on behalf of patients (and/or families) to cope constructively with receiving a mental illness diagnosis. Patients and families from traditional and rural communities were viewed as holding negative opinions with regard to schizophrenia. Therefore, psychiatrists anticipated multiple negative outcomes, such as the family’s demoralization/rejection of the patient, and harm to the therapeutic alliance. It is interesting that in these situations, psychiatrists endorsed a positive, more hopeful approach with families as a means of engaging their support for the patient. Other studies showed stronger social stigma, negative implications for inclusiveness and lower treatment quality for patients in smaller and more traditional communities as well (Arthur et al., 2010; Murthy, 2002). At the same time, psychiatrists’ considerations of diagnosis disclosure practices were influenced by their own social beliefs. Negative views about schizophrenia, labeled as “doomsday diagnosis,” or worse than having terminal cancer, signified a deep level of pessimism. This turned the task of disclosure into a burdensome endeavor, connoted with as having to be a prophet of doom. This negative stereotypical notion held by mental health professionals has been documented (Lauber & Rossler, 2003; Thornicroft, 2006). In the past, psychiatrists’ unbalanced exposure to those in more acute or persistent illness states accounted for such negative views (Cohen & Cohen, 1984). The findings of the present study highlight the relevance of bringing awareness to stereotypical notions specifically in the context of psychiatrists’ disclosure processes in tandem with those of patients and families. Finally, the fourth layer relates to psychiatrists’ emotional challenges when recognizing a patient has schizophrenia. Reluctant to be involved in another person’s suffering or otherwise face potentially hostile reactions from patients or families prevented psychiatrists from positively considering disclosure. It might be that the fear

expressed by the study participants was influenced by a current state in general health care involving fear of assault following the breaking of bad news of other physical illnesses; thus, the presence of strong emotional responses further prevented psychiatrists from creating an open dialogue about the diagnosis with conumers or their family members. Different from their routine work, disclosure required doctors to employ unique interpersonal competencies and emotional maturity. As learned from other health conditions, appropriate training of breaking bad news can be supportive and valuable (Fallowfield & Jenkins, 2004; Seeman, 2010). Overall, the multilayered set of challenges presented here begins to address the debate of truth telling in psychiatry. Future investigation can benefit by incorporating these aspects to identify optimal ways of embedding diagnosis and information provided; for example, taking into account when diagnosis disclosure is given (e.g., after one, five, or 10 sessions), examining the social perceptions and cultural backgrounds of the psychiatrist and patient, exploring the state of the relationship, and determining the state of the illness. Overall, we suggest that these different aspects influence treatment engagement, motivation, and treatment adherence, and patients’ and psychiatrists’ well-being. In practical terms, the complex model presented here calls for multiple efforts for better understanding and design of guidelines to address each aspect of the challenge. Although some guidelines might be borrowed from the general breaking bad news models, as suggested for other diseases (e.g., SPIKES & Pre-SPIKES models; Baile & Beale, 2003; Meitar et al., 2009; Seeman, 2010), other considerations specific to the nature of schizophrenia and its psychosocial aspects need to be embedded in diagnosis sharing between psychiatrists and patients. These include addressing the limitations of the psychiatric diagnostic system; taking into account patients’ and psychiatrists’ stereotypes and prior notions about schizophrenia; incorporating information about rehabilitation and recovery; increasing awareness about patient and family sociocultural sensitivity; and providing emotional support and specific supervision for beginner psychiatrists. Limitations of the study involve the small sample and its specific Israeli cultural context. In addition, its focus on schizophrenia limits generalizability of the findings with regard to other psychiatric conditions. The focus on nondisclosure calls for future studies that will identify “success stories” of disclosure. These can help identify optimal ways for conveying a diagnosis and providing information. Examination of larger samples and other diagnosis disclosure practices within psychiatry can be the next research step to broaden knowledge and practice.

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The following questions lies at the heart of this study: How can diagnosis disclosure (also perceived as breaking bad news) and information provision be embedded as part of a bond-building process, helping to set tasks and goals, and to elicit hope? Truth telling has been part of one of the great bioethical shifts of the 20th Century, from medical paternalism to respect for patient autonomy; nevertheless, the findings of the present study support other studies showing that psychiatry as a human interaction health care field has lagged behind on this debate and needs to face the issue of diagnosis telling and sharing more directly (Baile & Beale, 2003; Baile et al., 2000; Buckman & Baile, 2007; Fallowfield & Jenkins, 2004; Kanaan, 2009; Karnieli-Miller et al., 2007; Mitchell, 2007; Seeman, 2010). And how might lack of diagnosis disclosure practice impact the possibility of a self-determined recovery and rehabilitation process? The present study findings contribute to this discussion by shifting focus from the question whether or not to disclose, onto the question how sharing knowledge and information regarding schizophrenia should be communicated (Kanaan, 2009; Rose & Thornicroft, 2010), and how we can help psychiatrists deal with their personal and professional concerns that play a role in this task. Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The authors received no financial support for the research, authorship, and/or publication of this article.

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Author Biographies Galia S. Moran, PhD, is a clinical psychologist, formerly at the Department of Community Mental Health, University of Haifa, and currently assistant professor at the Social Work Department of Ben Gurion University, Israel. Galit Oz, is a vocational practitioner and a graduate of the Department of Mental Health, University of Haifa. Orit Karnieli-Miller is a social worker and assistant professor at the Department of Medical Education, Sackler School of Medicine, Tel Aviv University.

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