Communication of a schizophrenia diagnosis: A qualitative study of patients’ perspectives

Abstract

Background:

Transparent diagnostic communication is considered best practice for clinicians. However, while patients expect to receive a schizophrenia diagnosis from their psychiatrist, research suggests mental health clinicians are often reluctant to provide this information to patients.

Aim:

This study examines the perceptions of people with schizophrenia surrounding the communication of this diagnosis.

Methods:

A generic qualitative methodological approach was used. A total of 14 patients with schizophrenia were recruited through community mental health services (n = 10) and the Australia Schizophrenia Research Bank (ASRB; n = 4) in New South Wales (NSW), Australia. Semi-structured interviews were used to explore the experiences and perceptions of people with schizophrenia about the way a schizophrenia diagnosis was communicated by mental health clinicians. Interviews were recorded, transcribed, codes generated and thematic analysis undertaken aided by NVivo.

Results:

The majority of participants felt it was beneficial to receive a diagnosis despite acknowledging the distress this information sometimes caused, with many reporting this knowledge gave a sense of relief. It helped to understand their experiences and behaviours, improved their trust in the psychiatric system and increased treatment adherence. However, many reported difficulty in obtaining information about their condition, its treatment and prognosis, and expressed dissatisfaction with the way a diagnosis of schizophrenia was communicated.

Discussion:

Insight into the perceptions and experiences of patients with schizophrenia about how a diagnosis of schizophrenia is communicated is a key outcome of this research. This knowledge will inform the development of future training programmes for mental health clinicians, and influence the clinical practice of health professionals treating patients with schizophrenia.

Keywords

Psychosis patients’ perceptions clinical practice communication semi-structured interview

Introduction

Transparent diagnostic communication is considered best practice for clinicians, regardless of their discipline. Compared to numerous oncology guidelines that promote open diagnostic disclosure (e.g. National Council for Hospice and Specialist Palliative Care Services, 2003; National Institute for Clinical Excellence, 2004), specific guidance relating to communicating a mental illness diagnosis is harder to find (Mitchell, 2007). In 1983, the World Psychiatric Association recommended, ‘The psychiatrist should inform the patient of the nature of the condition, therapeutic procedures, including possible alternatives, and of the possible outcome’. This position is echoed in the current National Institute for Health and Care Excellence (NICE) (2009) guidelines for schizophrenia. However, despite these guidelines, research suggests that psychiatrists are often reluctant to provide patients with a schizophrenia diagnosis (Clafferty, McCabe, & Brown, 2001; Outram et al., 2014a). Reasons for this include diagnostic uncertainty, lack of definitive laboratory tests and concerns about negative patient reactions to the diagnosis (Outram et al., 2014a).

Patients, on the other hand, prefer to be informed about their diagnosis (Mitchell, 2007). Patients with schizophrenia, in particular, report a preference for having diagnostic information provided by their psychiatrist (Fisher, 2000; Hallett et al., 2013; Magliano et al., 2008). In the limited research that has been conducted on this topic, in one study, up to 40% of patients with schizophrenia report not receiving sufficient information about their illness (Ferreri et al., 2000).

A failure to impart adequate information has been associated with poor mental health outcomes and negative patient experiences. Furthermore, the way in which information is imparted impacts upon patient experiences, and good communication, including a more systematic approach to information giving, is essential to improving the experiences of people with schizophrenia.

This article examines the perceptions and experiences of people with schizophrenia about the communication of a schizophrenia diagnosis, extending previous research in this area. The study was conducted as part of a larger programme of research that sought to explore the viewpoints and experiences of key mental health stakeholders (clinicians, people with schizophrenia and carers). The data from this study, and that published previously for clinicians (Outram et al., 2014a, 2014b) and carers (Outram et al., 2014c), will inform the development of training programmes for mental health clinicians focused on communicating a schizophrenia diagnosis.

Methods

Sample

A qualitative approach was utilized based on Caelli’s generic principles (Caelli, Ray, & Mill, 2003). A total of 14 participants were recruited between May and December 2011 through community mental health services (n = 10) and the Australian Schizophrenia Research Bank (n = 4) (ASRB, Loughland et al., 2010; http://www.schizophreniaresearch.org.au). Participants were aged between 33 and 65 years (males = 9) and living in regional New South Wales (NSW), Australia. Time since first diagnosis ranged from 6 to 21 years, participants were community dwelling and all were receiving treatment for their mental illness at the time of interview. Those with co-morbid drug and alcohol addiction, brain injury or impaired IQ (<70) were excluded from the study.

Procedure

An experienced interviewer (G.H.), unknown to the participants and not involved in their treatment, conducted semi-structured interviews exploring their perceptions and experiences of communication about diagnosis with mental health clinicians. Interviews were undertaken in hospital consulting rooms or similar venues, lasted approximately 90 minutes, recorded (with the written consent of participants) and transcribed verbatim by the interviewer. Human Research Ethics Committee approval was obtained. Participants received a AUD$30 voucher to compensate for out of pocket expenses. Pseudonyms are used to protect identity.

Data analysis

Data analysis was ongoing during the data collection. Sample size was limited by the availability of suitable participants within the given recruitment period and theme saturation. Transcripts were coded using an agreed scheme by three independent coders (authors C.L., K.C. and S.O.), and data sorted and organized using NVivo 0.9 (QSR International Pty Ltd, 2010). Broad, meaningful themes were developed and relationships between themes identified (Strauss & Corbin, 1998). Summaries were prepared for each theme to facilitate discussion and analysis at regular team meetings. Recruitment source (health service or ASRB) was examined, but no differences across variables of interest or themes were observed.

Results

Three main themes emerged: the importance of communicating a diagnosis of schizophrenia (including benefits of receiving a diagnosis and repercussions of not receiving a diagnosis); difficulty obtaining information about diagnosis, prognosis and treatment; and dissatisfaction with the way a schizophrenia diagnosis was communicated.

The importance of communicating a schizophrenia diagnosis

The majority of participants (n = 13) believed it beneficial to receive a diagnosis. Although all experienced an initial ‘sense of disbelief’ following diagnosis, many participants also experienced a sense of relief that they finally had a medical diagnosis for their illness:

Yeah, it was a relief; for the initial couple of days it was a relief to actually have a diagnosis. And I had known, I had enough insight to know that I was a bit cracked in the head. That was my only term; I wasn’t sure what psychotic meant, but I knew, like looking back on it, I was having psychotic episodes. (Jenny)

Some participants reported that a diagnosis helped their understanding, legitimized distressing experiences and behaviours and that receiving a diagnosis improved their sense of wellbeing and control:

… I’ve learnt to keep myself calm, because I’ve found out that when I get stressed out, that’s when the schizophrenia starts coming in really strong, very strong. So I’ve just had to learn to try and keep myself calm, keep my mind even, busy, and it does help me. (Kate)

Even though some participants experienced difficulties with comprehension at the time of diagnosis, they felt it was beneficial to be given relevant information that could be processed at a later stage:

Sometimes you don’t get it when they tell you, but if you are lucky enough to remember … then it’s beneficial for sure. (Will)

Participants felt that not being informed of the diagnosis was ‘a mistake’ with various negative consequences. One patient emphasized that clinicians should not automatically assume a patient is aware they have a mental illness, just because they are being treated in a psychiatric hospital:

I remember being in hospital but no one told me I was schizophrenic … that was a big mistake. I can’t emphasize this enough … I would have accepted it more if they explained what schizophrenia was … (John)

This participant believed the lack of a clear diagnosis and information about schizophrenia resulted in medication non-adherence and poorer control of symptoms:

If … they’d let me stay a bit longer [in hospital], or maybe explained to me what schizophrenia was, the symptoms … I might have stayed on [anti-psychotic medication] and come good earlier. (John)

Difficulty obtaining information about schizophrenia

Only 2 of the 14 participants interviewed were satisfied with the information received from clinicians about schizophrenia. Many reported not being directly informed of their diagnosis, but became aware of it through indirect or inappropriate means: being provided with an information booklet on schizophrenia (without further explanation) or seeing the word ‘schizophrenia’ written on their General Practitioner’s medication prescription.

Participants reported a paucity of information about the nature and meaning of schizophrenia, which resulted in increased anxiety about their illness:

It wasn’t explained to me how schizophrenia works, or how you get it, anything like that. Because when I first went, I was telling them that I was getting all these condemnations and I was starting to get voices, and I had this particular behaviour and he said, ‘Oh, well, I’ll prescribe some medication for you’, and that was it. That was it … (Jack)

This participant also experienced significant anxiety about having a ‘split personality’ and the risk of harming others. He believed that the years he had lived in fear could have been avoided had adequate information been communicated about the nature of his illness:

… I lived for years in fear that I had a split personality; that I was going to break out and do something terrible. So I would’ve appreciated a dialogue that would’ve calmed me down and made me understand what was really going on instead of just giving me medication. (Jack)

Participants also reported a lack of information regarding prognosis and the long-term effects of schizophrenia. Some participants looked to other sources for information about prognosis including the Internet. Three participants recalled being told that ‘a third of people with schizophrenia recover; a third partially recover, and another third never recover’, and found this explanation provided hope when working towards recovery:

And I thought, ‘I’m not in the third that never recover’, because I was functioning reasonably well most of the time. So I thought, ‘Well, life’s not so bad after all’, and my journey of recovery slowly began. (Jenny)

Most participants stressed the importance of ‘realistic’ hope to their recovery: ‘… you don’t want to build people’s hopes up that high, that they’re going to pop a pill and it’ll [schizophrenia] all be over in three months time’ (Alex).

Participants generally felt they received insufficient information about treatment, particularly about medications and their purpose. Several participants felt poor communication about medication and possible side effects resulted in poorer outcomes:

… when they first put me on [anti-psychotic 1] and [anti-psychotic 2] at the same time … they didn’t tell me that my thinking wouldn’t be the best, and my memory wouldn’t be the best, with those two drugs at the same time. (Rick)

Other participants described a lack of communication when clinicians switched or altered medications. One participant said he would have had more trust in his doctor had he been informed about the ‘trial and error’ aspect of his treatment.

The roles of different mental health staff within treating teams were also poorly communicated, and few participants expressed an awareness of their rights. One participant told of the lifelong and devastating consequences of having a child removed from her care after experiencing suicidal feelings. When asked why she did not seek help from her psychiatrist earlier, she responded,

… if they told me that I had the right to ring up and make an earlier appointment at the psychiatrist’s, or go back to the GP and book a long appointment, and say ‘look, it’s fairly urgent and I need a long appointment’. I didn’t know that you could do that. I thought if they said, ‘See you in a month’, then you’ve got to put up with it for a month. (Jenny)

Patients who felt sufficiently informed were more confident to discuss treatment options. One participant felt that even though the final decision remained with the practitioner, information allowed him to engage and negotiate in the decision-making:

… I started reading into what medications would help, and their side effects, and their differences … I was reading into different sorts of drugs, and then I would mention them to him, and he might try them, but it was still up to him. He was still the doctor; he was still calling the shots. (Alex)

Dissatisfaction with communication

Most participants reported dissatisfaction with the way their clinicians communicated a schizophrenia diagnosis. Poor communication skills, including a lack of rapport and empathy, affected the patient’s trust in the clinician. One patient felt that his doctor made no attempt to create rapport during the consultation, which made him reluctant to discuss sensitive issues he felt were important. The clinician was perceived to respond inadequately to verbal cues and did not ask enough questions to discover the patient’s underlying concerns:

It was his style … to me as a psychiatrist, he wasn’t really helpful … he was just asking me questions, and then getting my responses and writing them down. So, it was his style, you know. It wasn’t really like I could open up if I wanted to say stuff … (Rick)

Another participant felt her General Practitioner was uninterested and ‘just didn’t want to know’. This perceived negative attitude had long-lasting effects:

I tried to talk to her about it; she didn’t want to know about it. And I thought to me, at that time, I thought, well, that was rudeness, which there was no need for, and even today I’m still really upset over it. The GP’s supposed to be there to listen to you, and to help you. (Kate)

Patients contrasted the communication styles of other professions (case workers and psychologists) with that of psychiatrists – the latter perceived as ‘more concerned with the illness than the person’ (Denise), and the former with ‘taking the time’ to get to know you (John). Other patients spoke of the difficulties in establishing rapport and a sense of relationship and trust with clinicians due to the high turnover of clinical staff:

There were a couple of doctors, because they cycled through them at a very rapid rate. So you’d just begin to build up a relationship with them, and then they’d change. (Denise)

Good communication

Although dissatisfaction was frequently expressed, a strong theme also revolved around positive interactions with clinicians and situations where participants felt they had been treated well. Participants in this study could clearly distinguish between doctors who treated them respectfully, communicated well and provided adequate information, from those who did not. Positive communication events appeared very memorable, even among respondents who struggled to answer interview questions.

Particular clinicians stood out. Three participants named the same caseworker, describing his good communication skills, ability to build rapport, educate patients and provide a sense of hope:

… he used to just come and see me, and I’d tell him how I was feeling, and he’d just tell me stories about his life, and ask me questions about what I was doing before I had schizophrenia. And I told him that I used to surf, and I used to have mates that I used to hang around with at the beach and all that. (Grant)

Another participant (Alex) ‘couldn’t fault’ his psychiatrist, describing how the doctor explained schizophrenia in terms he understood:

… Because he knew I was interested in computers and IT, saying ‘the hardware’s okay’, as in my body or whatever, ‘but the software wasn’t right, it wasn’t working properly’. (Alex)

This psychiatrist conveyed a sense of empathy, which was important, as it improved the participant’s perception of the overall interaction, increasing the likelihood of ongoing follow-up:

Well, the initial psychiatrist that I saw … well, I can’t say [he was] the best, because I don’t know how others would’ve handled the situation. But he seemed to have sympathy and empathy, which is good for a doctor that you know, in that situation. I probably would still like to see him again, but I don’t know where he is now. Just sort of to say, ‘How are you going, I’m here, I’m still alive’. (Alex)

Discussion

This is one of the few studies to ask about the processes of receiving a diagnosis of schizophrenia and the issues surrounding it. There were three themes: the importance of communicating a schizophrenia diagnosis; difficulty obtaining diagnostic, prognostic and treatment information; and dissatisfaction with the way a schizophrenia diagnosis was communicated. Findings from this research contribute to the limited body of knowledge in this area, provide important insights for clinical practice and inform the development of psychiatry training programmes targeting clinical communication skills.

Consistent with previous findings (Fisher, 2000; Hallett et al., 2013; Mitchell, 2007), our results confirm that most patients prefer a diagnosis, rather than living with the uncertainty. Diagnosis provided a sense of relief for many, helping to understand experiences and behaviours. Poor communication, and the lack of sufficient information, on the other hand, served only to exacerbate feelings of anxiety, mistrust and poorer medication adherence, and failed to dispel common myths about schizophrenia. This was exemplified by participants’ stories of living on the streets, or with the belief they had multiple personality disorder and could unknowingly harm others.

Perhaps a more disturbing finding was the haphazard way that some participants became aware of their diagnosis. Previous research demonstrates that patients with schizophrenia prefer to hear diagnostic information from their psychiatrist (Hallett et al., 2013). Haphazard or inappropriate disclosure about diagnosis does little to reassure patients, build trust or improve understanding. Clear diagnostic information with adequate counselling about related aspects of the illness is shown to be beneficial to both the doctor and patient – increasing patients’ trust in medical staff and treatments, and allowing the development of effective coping strategies (Ferreri et al., 2000; Magliano et al., 2008). Realistic hope, in particular, was identified as an important aspect of care in this study, with many participants believing it was essential to their recovery. Nevertheless, this is a challenging concept for many clinicians (Levin et al., 2011). Pitt, Kilbride, Welford, Nothard, and Morrison (2009) found that without hope, diagnosis is received as a ‘prognosis of doom’. The current findings support this assertion, showing that those who received adequate information about their diagnosis, and were given realistic hope, felt better able to accept their illness and treatment, and to move on with their lives.

Despite numerous examples of poor communication, participants were fairly balanced in their views, reporting both good and bad communication experiences. Good communicators were remembered just as readily as the bad, with participants identifying specific clinicians who treated them respectfully, provided adequate information and established rapport. It was also clear from participant’s stories that developing clinician–patient rapport was often made more difficult by the lack of continuity in care. Patients in the public healthcare system had no control over which practitioner they might see, or who might follow them up at the next visit. The anxiety this caused was further exacerbated by busy clinics and short consultation times, leaving little opportunity for participants to engage in in-depth discussions with clinicians about their worries or concerns, sadly reflected for some participants in their stories about the removal of children, medication non-compliance and re-hospitalization. Carers of people with schizophrenia report similar experiences (Outram et al., 2014c), suggesting this is a common experience for mental health service consumers.

However, we do not take these findings to mean that clinicians in the public sector are uncaring or unconcerned. Evidence by our group suggests the contrary, with most clinicians saying they prefer to discuss a schizophrenia diagnosis with patients. They often did not do so out of concern for the wellbeing of their patients, identifying diagnostic uncertainty, stigma, hopelessness and self-harm as the primary reasons (Outram et al., 2014a). These are all important considerations; however, clinicians’ fears about the way individual patients might respond to diagnostic and treatment news might not be well founded if delivered in a patient-centred way. The majority of participants in this study wanted to be fully informed about their illness, despite the distress they experienced at receiving this news. In the absence of sufficient information or an adequate explanation, participants reported feeling poorly treated, while those able to report effective diagnostic communication encounters stated the opposite was true.

This study has several limitations. Given the highly variable length of time from first diagnosis of schizophrenia to study participation, it is possible that communication practices have changed over this time. However, evidence from other sources suggests this is not the case (Outram et al., 2014a, 2014b, 2014c; Seeman, 2010). Future recruitment of more recently diagnosed participants as well as a broader age range to include younger participants would provide a clearer picture of patients’ perspectives. This study used two recruitment sources. Previous research (Hillen, de Haes, Verdam, & Smets, 2014) has shown that non-patient recruited samples (e.g. ASRB) may perceive and judge clinicians more critically than patients do. While no recruitment source differences were observed between ASRB and health service recruited participants, it is possible that ASRB participants negatively influenced the findings. All participates had a clinical diagnosis of schizophrenia and were currently receiving treatment for their illness and had been for many years. We did not interview people who had fully recovered or those whose condition was later found not to be schizophrenia, so the perspective of these individuals is not represented here. The ability to reliably communicate experiences and perceptions may also be complicated by the effects of the illness at the time of the interview.

Conclusion

Communication skills training for psychiatrists focusing on communicating a schizophrenia diagnosis is a relatively new concept. Treating people with schizophrenia is complex, involves risks (stigmatizing, labelling), especially when the diagnostic situation at the time is unclear, and patients’ ability to take on board diagnostic information is impaired (e.g. acute phase, marked cognitive deficits). Gaining insight into the perceptions and experiences of people with schizophrenia about the way a schizophrenia diagnosis is communicated is a key outcome of this research, highlighting the need for a patient-centred approach. The results of this research aim to inform the development of training programmes for mental health practitioners (see Loughland et al., 2014), and improve the clinical practices of healthcare professionals caring for patients with schizophrenia.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

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