Quality of care in psychosis and bipolar disorder from the service user perspective.

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2013

QHRXXX10.1177/1049732313509896Skelly et al.Qualitative Health Research

Article

Quality of Care in Psychosis and Bipolar Disorder From the Service User Perspective

Qualitative Health Research 23(12) 1672–1685 © The Author(s) 2013 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049732313509896 qhr.sagepub.com

Niamh Skelly1, Rebecca I. Schnittger1, Lisa Butterly1, Charlotte Frorath1, Craig Morgan2, Declan M. McLoughlin1, and Paul Fearon1

Abstract According to the recovery model of mental health care, service development should incorporate the expert knowledge of service users. To date, there has been limited research into conceptualizations of mental health care quality among services users diagnosed with bipolar disorder or psychosis. To investigate service user perspectives on quality of care, we conducted six focus groups (N = 29) with inpatients and outpatients of an independent Irish mental health service. We undertook an inductive thematic analysis of the data. Participants identified proactive staff, meaningful and warm staff–patient interactions, and safety and sociability in the inpatient environment as components of good quality mental health care. Participants also discussed how the implementation of best practice guidelines does not necessarily improve quality of care from the service user perspective. This and similar qualitative research should be used to inform service development and the creation of evaluation instruments compatible with the recovery model. Keywords bipolar disorder; focus groups; health care, users’ experiences; qualitative analysis; quality of care; schizophrenia Mental health services in many countries are being increasingly aligned with the recovery model (Commonwealth of Australia, 2009; Expert Group on Mental Health Policy, 2006; Mental Health Commission of Canada, 2009; South West London and St George’s Mental Health Trust, 2007). Although an ambiguous paradigm, the recovery model is broadly characterized by an emphasis on (a) the expectation of recovery, (b) the promotion of self-management, and (c) the development of services that facilitate the individual’s personal journey toward recovery. In addition, social inclusion and subjective quality of life are central to the recovery model. Recovery implies that people who have experienced mental health difficulties are as integrated and active in broader society as they desire and enjoy fulfilling, personally meaningful lives (Roberts & Wolfson, 2004). It does not necessarily correspond to the complete remission of symptoms or a clinically defined level of “normal” functioning. Incorporation of the expert knowledge of service users into service development is a core component of recovery-based practice. Another core component is psychosocial, qualitative research that explores the lived experience of mental illness and recovery (Mental Health Commission, 2005). These components underscore the importance of conducting and applying research in quality of care from the service user perspective. The opinions

of service users on aspects of mental health care that help or hinder recovery should be systematically sought, analyzed, and used to inform service development.

Quality of Care From the Clinical Perspective Many definitions of, and approaches to, quality of care are clinical in nature. They are based on the opinions of clinicians and other health care professionals and/or the empirical literature, particularly outcome studies and randomized trials. Despite quality judgments being subjective and values-dependent (Brown, 2007), the views of other participants in medical systems, institutions, and encounters—most notably service users—are neglected in both the medical literature as a whole and psychiatric literature specifically (e.g., Dickey, Hermann, & Eisen, 1998; Kilbourne, Keyser, & Pincus, 2010; van Weeghel et al., 2011). The neglect of service user perspectives on 1

St. Patrick’s University Hospital, Dublin, Ireland King’s College London, London, United Kingdom

2

Corresponding Author: Niamh Skelly, St. Patrick’s University Hospital, James’s Street, Dublin 8, Ireland. Email: [email protected]

Downloaded from qhr.sagepub.com at University of Ulster Library on March 9, 2015

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Skelly et al. quality of care can be explained partly by the historical power structure of mental health services. Historically, the lived experiences and preferences of service users were subordinate to the medical expertise and “objective” opinions of those who treated them. Attempts to redress historical power imbalances risk being negated if the tenets of evidence-based medicine (EBM) are applied wholesale to mental health care. EBM imposes a narrow definition of “evidence” and does not accord importance to lived experience or subjective knowledge (Krahn & Naglie, 2008). The parallel ascent of patient-centered care (PCC) might prevent unreflective adherence to EBM, though tensions between these paradigms have yet to be constructively addressed (Bensing, 2000). PCC—like recent Irish mental health policy (Expert Group on Mental Health Policy, 2006) and the philosophies of service-user-led organizations (National Service Users Executive, 2010)—emphasizes respect for service users as individuals and providing care according to each individual’s own value system. It is compatible with, but more general than, the recovery model because it applies to all medical care. Clinical practice guidelines (CPG) are decision-making tools that facilitate the application of EBM in everyday clinical practice. They are based on the best available empirical literature on outcomes and effectiveness for a given condition. They are therefore a prime example of quality of care from the clinical perspective. A number of CPG exist for psychiatric conditions, including schizophrenia (Lehman et al., 2004; Milner & Valenstein, 2002; National Collaborating Centre for Mental Health, 2010) and bipolar disorder (Bauer et al., 1999; Duffy et al., 2005; Hirschfeld et al., 2002). Some quality of care studies evaluated mental health services by examining the extent to which they corresponded to a set of CPG (Busch, Frank, & Lehman, 2004; Busch, Huskamp, & Landrum, 2007; Lehman, Steinwachs, & The Survey Co-Investigators of the PORT Project, 1998). CPG are traditionally not patient centered. They reflect clinical priorities in care. Krahn and Naglie (2008) argued that patient preferences should be considered at every stage of CPG development and implementation. The clinical guidelines published by the UK National Institute for Health and Clinical Excellence are innovative in this regard (National Collaborating Centre for Mental Health, 2006, 2010). In these guidelines, the definition of “quality” is broadened to include the patient experience in addition to the traditional dimension of clinical effectiveness. To facilitate the development of more patient-centered CPG, Krahn and Naglie recommended the collection of “preference-related evidence” (p. 437). However, many quality of care studies contain no such preferencerelated evidence or evidence of questionable validity. This is the result of researchers employing clinical

definitions of quality of care and failing to explore the service user perspective. Many satisfaction studies have similar shortcomings.

Service User Satisfaction A number of studies have examined service user satisfaction with mental health services (e.g., Edlund, Young, Kung, Sherbourne, & Wells, 2003). Some have used mental-health-specific satisfaction measures (e.g., Jabbar, Casey, Schelten, & Kelly, 2011; Peytremann-Bridevaux et al., 2006; Ruggeri et al., 2000). Levels of patient satisfaction are frequently used as proxies for health care quality. However, despite the terms being used interchangeably, service user satisfaction is not the same as quality of care from the service user perspective (Gill & White, 2009). That service users report themselves to be satisfied with a service or aspects of a service says little about the aspects they believe are important for recovery or the extent to which they believe a service is delivering on these aspects. Researchers in some satisfaction studies utilized instruments that were developed through research with service users (e.g., Jabbar et al.). However, a relative lack of methodological detail and the inclusion of generic satisfaction questions lead to doubts about how firmly grounded they are in the service user perspective. There are several reasons why studies of satisfaction are more common than studies of quality of care from the service user perspective. The measurement of satisfaction is generally more convenient and less resource intensive than exploration of quality of care from the service user perspective. Additionally, satisfaction surveys often reflect management concerns. In their construction, service users receive limited opportunities to define important aspects of care. Moreover, satisfaction ratings tend to be high and show little variability (Powell, Holloway, Lee, & Sitzia, 2004). They are thus of minimal utility for identifying aspects of care in need of improvement. Empirical investigations have shown satisfaction ratings to be artificially inflated and incongruent with opinions elicited via open-ended, qualitative methods (e.g., Avis, Bond, & Arthur, 1997; Williams, Coyle, & Healy, 1998). However, there have been notable efforts to create more sensitive and psychometrically valid satisfaction instruments (e.g., The Verona Service Satisfaction Scale; Ruggeri & Dall’Agnola, 1993; Ruggeri et al., 2000). Satisfaction studies are commonplace despite the concept itself lacking a firm theoretical base (Gill & White, 2009; Sitzia & Wood, 1997; Turris, 2005). This theoretical confusion makes the interpretation of satisfaction ratings difficult and the conclusion that a health care service is of good quality because service users are satisfied problematic. Although there has been little theoretical


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exploration of quality of care from the service user perspective, the findings of Williams et al. (1998) underscore the importance of focusing on the patient experience and attached meanings. The concept of quality of care, and the manner in which it has been operationalized, might more closely reflect the patient experience than satisfaction ratings.

Quality of Care From the Service User Perspective To examine quality of care from the service user perspective, researchers should ideally offer service users a forum to provide their own definitions of good quality mental health care. Service users should have the opportunity to discuss what matters, what helps, and what hinders. Although not all research into quality of care from the service user perspective involves open-ended, indepth methods, such methods are a necessary precursor to the development of more structured approaches. On the basis of exploratory qualitative findings, structured quality of care questionnaires rooted in the service user perspective might be developed (see e.g., Care Quality Commission, 2012; Mavaddat, Lester, & Tait, 2009). Several methodologically rigorous studies examining quality of mental health care from the service user perspective can be found in the literature. These studies have spanned different Western cultures and various diagnostic groups. A range of different methodologies has been utilized. Several studies featured in-depth individual interviews (Gilburt, Rose, & Slade, 2008; Johansson & Eklund, 2003; Schröder, Ahlström, & Wilde Larsson, 2006) or focus groups (Gilburt et al.; Mavaddat et al., 2009). Data for one study resulted from open-ended questions posed in the context of a broader, highly clinical structured interview (Tunner & Salzer, 2006). The quality of the “helping encounter” (Johansson & Eklund, 2003, p. 342), or the interpersonal relationship between patients and staff, have been consistently identified as central to service user perceptions of good care (Gilburt et al., 2008; Johansson & Eklund; Mavaddat et al., 2009; Schröder et al., 2006; Tunner & Salzer, 2006). A variety of other issues beyond the staff–patient relationship have also been highlighted in previous studies. For example, service users have emphasized the importance of the hospital environment and its influence on well-being (Gilburt et al.; Johansson & Eklund; Schröder et al.). They have also highlighted broad, systems-level issues such as accessibility and continuity of care (Mavaddat et al.), case and medication management (Tunner & Salzer), and a recovery-focused approach (Schröder et al.). Service users are not a homogeneous group. Both the recovery model and PCC emphasize personal values. Just as their results should be applied with respect for

individual preferences, quality of care studies should be localized and constrained to specific diagnostic groups. This would facilitate examination of culture- and diagnosis-specific perspectives. A number of Irish studies have examined service user experiences of care and recovery, thus providing localized perspectives (Crowe, 2004; Dunne, 2006; Kartalova-O’Doherty & Tedstone Doherty, 2010). However, these studies did not specifically examine quality of care. Although an understanding of service user perspectives on quality of care might perhaps be extrapolated from this grey literature, diverse research focuses and varying levels of methodological rigor make reliable synthesis difficult. In this article, we present the first (to our knowledge) Irish study of quality of mental health care from the service user perspective. We focused on two diagnostic groups associated with extensive contact with mental health services.

Methods To explore service user perspectives on what constitutes good quality mental health care, we conducted unstructured focus groups. All participants had an established diagnosis of bipolar disorder or psychosis. A service user researcher was involved in the design and conduct of the focus groups. Collected data were subjected to an inductive thematic analysis (Braun & Clarke, 2006) that incorporated investigator triangulation (Denzin, 1970).

Recruitment and Participant Demographics We recruited participants from current inpatients and outpatients of an independent mental health service based in a large Irish city with a nationwide catchment area. To be considered eligible to participate, a patient had to meet all of the following criteria: aged 18 or older, clinical diagnosis of at least 6 months standing of a psychotic or bipolar disorder, able to give informed consent, and well enough to participate in a group discussion. Additionally, all inpatients had to have been admitted at least 2 weeks prior to the focus group, to ensure a minimum level of inpatient experience. A patient who met any of the following criteria was excluded: current involuntary status, diagnosis of a personality disorder, diagnosis of a primary substance abuse disorder, or diagnosis of moderate to severe cognitive impairment. We judged the eligibility of potential participants via examination of medical records and consultation with the treating team. Once identified, eligible inpatients were approached in person; eligible outpatients were contacted in person or by phone. We emphasized the voluntary and nontherapeutic nature of participation to all patients approached. Those who agreed to participate provided written informed consent and also completed a short


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Skelly et al. demographics questionnaire. As a token of appreciation, we provided each participant with a payment of €10. This study received ethical approval from the ethics committee of the service in which it was conducted. We held six focus groups (FG1-6; N = 29) over a 4-month period. Fifteen men and 14 women participated in the study. At the time of the study, 21 participants were inpatients and 8 were outpatients. Ten participants had a diagnosis of a psychotic disorder and 19 had a diagnosis of bipolar disorder. Participants ranged in age from 25 to 75 years. Nine participants reported a previous involuntary admission and 13 reported experience of other mental health services. Four groups were diagnostically mixed and consisted only of inpatients (FG1, n = 5; FG2, n = 4; FG3, n = 3; FG4, n = 6). An additional group consisted only of outpatients with a diagnosis of bipolar disorder (FG5, n = 6). The final group consisted of a mixture of inpatients and outpatients, all of whom had a diagnosis of psychosis (FG6, n = 5).

Procedure We chose focus groups over other approaches to data collection because the processes of group interaction facilitate exploration and clarification of personal experience. This results in richer, more complex data (Kitzinger, 1994). Moreover, focus groups allow for the “decentering” of the researcher. They provide participants with greater opportunities to take ownership of the discussion space (Kamberelis & Dimitriadis, 2005). Additionally, focus groups encourage the participation of those who do not wish to be interviewed alone or worry that they have little to contribute (Kitzinger). They are therefore a particularly apt methodological choice when seeking to interview people with serious mental illnesses. As a result of marginalization and stigma, such individuals might be reluctant to share their views with research professionals (Owen, 2001; Repper, Perkins, & Owen, 1998). Each focus group lasted approximately 1 hour and was conducted within the service but outside of the ward environment. Two of the three female field researchers (the first, second, and third authors) attended each focus group. With the exception of the first focus group (FG1), each focus group was attended by a researcher who had self-experience of using mental health services. It has been suggested that service users are more at ease and more open when interviewed by someone who also has firsthand experience of living with mental illness and attending services (Rose, 2001). At the beginning of each focus group, we emphasized the confidential nature of the discussion. It was also explained that we were not members of any treating team within the service. We encouraged participants to speak about their experiences of mental health care in general, not just their current

admission/outpatient program and not just the service in which the research was being conducted. The extracts presented in this article therefore refer to experiences in several different services. The format of the focus groups was largely unstructured, so as to increase the validity of the data and limit distortion of participants’ lived experiences. Specifically, we wished to avoid imposing our own preconceived ideas about what constitutes good quality mental health care. We asked participants to give their opinions through a series of nondirective, general probes (e.g., “Was there anything any of you found particularly helpful or unhelpful in your care?”). During the discussion, we reflected back to participants our understanding of what was being said, to check the accuracy of these understandings. We also redirected the discussion when it lulled or veered off topic. In addition, we intervened when participants made generic statements about quality of care (e.g., “I found the staff excellent”) to probe what it was about care that contributed to these appraisals (e.g., “And what was excellent about them?”). We made an audio recording of each discussion. Despite the methodological advantages of focus groups, offering individual interviews might have facilitated greater participation in our study of more socially inhibited patients. However, we strove to make the group setting unthreatening to encourage the participation of anxious or isolated participants. For example, we encouraged participants to arrange the seating however was most comfortable. We also facilitated smoking and tea breaks to lessen the potential stressfulness of the group setting. The size of some focus groups was also potentially methodologically problematic. Two of the six focus groups contained fewer than five participants. Small groups might yield less rich data because of limited group interaction. However, data from the two smallest groups appeared no less thematically rich than data from the other groups.

Analysis We transcribed all focus group recordings verbatim, which facilitated familiarization with and immersion in the data. The analysis process was data driven, focused on the semantic level, and based on the framework for thematic analysis outlined by Braun and Clarke (2006). Two members of the research team (the first and second authors), initially working independently, examined the data from each focus group in detail and made notes on possible codes. This was an iterative process and involved both listening to the recording and reading the transcript to ensure the groundedness of formulated codes. After preliminary, individual analysis, we held consensus meetings to compare our perspectives and devise


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an agreed set of codes. This consensus-based approach to investigator triangulation was not intended to ensure convergence on a truthful, unbiased perspective. Rather, we were aiming to minimize as much as possible our individual biases and ensure a nuanced, credible perspective on the data (Mathison, 1988). We organized and documented the collaborative stages of the analysis process using NVivo qualitative analysis software (QSR International, 2010). Although our focus was initially on patterns of meaning within each transcript, we began to make comparisons of patterns across transcripts once they all had been examined in isolation. Upon completing analysis of the six focus groups, we decided that no further data collection was necessary. No new themes were developed from the final transcript analyzed, and previously identified themes were repeated.

Results Seven interrelated themes are presented in turn in the following. Three of these themes center on staff interpersonal behaviors. A fourth theme concerns the power dynamic in the staff–patient relationship. Desirable attributes of the inpatient environment are covered in two additional themes. The final theme focuses on the impact of policy implementation on the inpatient experience.

Staff Should Be Proactive The focus group data indicated that from the patient perspective, the issue of access to mental health care is not necessarily resolved once a person enters hospital. Access to staff, as well as to talking therapies, can remain a difficulty for inpatients. Participants highly valued staff proactivity in approaching and engaging with them. For example, for one participant the advantages of having a designated nurse were realized only if that individual was proactive in approaching patients: She’d come round and make herself known, you know, in the morning. She’d say, “I’m [name], I’m your nurse for the day,” put her number on the board then. But it’s actually written on the board here in our place out in the corridor, but I never really look at it. She could kind of make herself more known.

Two participants spoke in critical terms of how, in their experience, nurses lack such proactivity. For one of these participants, this resulted in long stretches without any contact with nursing staff: From my experience, I find, with the exception of a few nurses, an awful lot of the nurses never approach you, never sp—. You could go five days without even having any interaction with any of the nurses. There’s nobody taking active interest.

Some participants differed in that they appeared to value staff approachability and did not emphasize proactivity. For example, one participant was untroubled by having to approach nurses, finding them receptive and reliable. In contrast, another participant spoke of having to seek out a doctor after 5 days of no contact. Her story contained undercurrents of hurt and a sense of neglect, particularly because she felt in need of medical intervention: I didn’t get to see a doctor for five nights. Now, I have shaken hands with my doctor now and we’ve gotten over that, but I had to write a comment card and highlight what they’re saying in the comment card: “Mental health matters.” And I said, “This is ludicrous.” I’d go see a doctor in the middle of the night to get me off the Rivotril in the morning and then I saw my doctor to get Valium during the day. Now, that’s not being looked after. Five whole days.

As will be seen, staff proactivity contributed to participants feeling safe in the inpatient environment. This also influenced the quality of interpersonal relationships between staff and patients. Specifically, staff proactivity contributed to participants’ sense that staff were interested in them, which was experienced extremely positively.

Staff Should Engage With Patients in a Meaningful Way Participants emphasized the importance of meaningful interactions between staff and patients. They wanted more than simply the opportunity to interact with staff. Willingness to give time was discussed in several focus groups. One participant expressed her appreciation of a student nurse who sat and talked with her, giving the impression that “she had all the time in the world.” Another participant, discussing the busyness of psychiatrists, contrasted those who “gave the time” despite their busyness with those who rushed him. Willingness to give time was closely related to feeling listened to. One participant spoke of two experiences of not feeling listened to by her psychiatrist. First, she described not feeling listened to when her psychiatrist forgot fundamental details about her life circumstances. She felt like she was “just a number” rather than a unique individual whose life details mattered. On another occasion, after speaking at length about a situation that was troubling her, her psychiatrist responded in such a way as to suggest that he was not interested in and had not listened to her problems: He walked out in front of me and said, “If you aren’t feeling better, come back.” Like, he didn’t listen and walked out the door in front of me. He wrote something down, just took the pile [of medical charts] up and walked out.


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Skelly et al. Specifically in relation to their health, participants valued staff who were thorough and made a real effort to understand the root of an issue. For example, asked to expand upon her comment that her psychiatrist was “very good,” one participant stated, “She’s thorough. She tries to get to the bottom of the problem. And she goes into it, detail with you.” Another participant spoke of experiencing side effects from medication and the contrasting responses of different staff: One issue I brought up a couple of nights ago, the nurse pooh-poohed it and put it down to something which it’s not. I said it to the doctor today and he said he’ll look into it, as to why this is happening—a problem in my body as a result, I believe, of the tablets.

The thoroughness of her doctor and his willingness to believe and act on what she said constituted good quality mental health care according to this participant. Just as they appreciated staff being responsive and thorough, participants disliked not being believed. One participant described the dismissive, skeptical attitude of staff when she reported severe side effects after the discontinuation of a medication: I was put on Largactil one time and one morning the nurse said, “Ah, I don’t think you need that Serenace,” which was to counteract the side effects. And then following that I got this lockjaw, my knees were shaking. I said it to the nurse the following morning and she said I don’t—, you know, she wouldn’t give me the Serenace again. And I asked her, “Well then, to what would you attribute these problems that I’m having?” Anyway, she called the doctor and it was the registrar came in, and when I held out my hands for her she said, “Oh.”1 She gave it away. “Oh, you are shaking.”

This participant was hurt that staff initially dismissed her concerns and were surprised when they saw physical evidence that supported her belief. Another participant spoke of how such experiences of not being believed could negatively impact on patients’ well-being and recovery, stating, “You tell them something, they don’t believe what you’re telling them, and it’s often a, one hundred percent true. . . . I think it lengthens your stay.” One participant, expressing frustration at the sometimes dismissive and paternalistic attitude of staff, considered their motivations to treat patients in such a manner. She stated that staff were attempting to help patients while in fact they were having a deleterious effect on patients’ sense of self-worth: I don’t know if it’s because I’m unwell and I’m getting a little bit paranoid or something, they really kind of have to dismiss you a lot and it’s kind of like they don’t want to feed into your behavior at all because you might get a little bit higher, but it drove me mad. . . . When you do get sick you

come into hospital because you really need to be taken care of, but it’s just a bit—, doesn’t feel nice when you are an adult and people are treating you like that.

Another participant spoke of a more extreme version of dismissiveness, driven by lack of optimism about his prognosis. He stated, referring to a psychiatrist, “He just he wrote me off, basically, because I was diagnosed with paranoid schizophrenia.” Whereas other patients discussed specific requests and complaints being dismissed, this participant highlighted the more pervasive dismissal, and resulting disempowerment and stigmatization, of those diagnosed with schizophrenia.

Staff Should Show Warmth and Balance In outlining their conceptualizations of good quality mental health care, participants emphasized the emotional tone of patient–staff interactions. One participant stressed that truly empathic responses are heartfelt, rather than forced: When you get to the inevitable sad bits, he sort of said, “Awh.” And that really sounded so insincere. I could almost see the textbook page there in front of me: “At this point, one should sympathize or empathize with the patient, perhaps say, ‘Awh.’”

Another participant described the brusque, business-like tone of her psychiatrist. She recognized his skill as a clinician but criticized his lack of warmth. Although participants tended to link a warm emotional tone to staff proactivity and engagement, one participant highlighted how small, fleeting gestures could sustain a warm patient–staff connection: “I find even though they’re very busy doing their work, the nurses, they’ll smile to you as they go along.” As well as displaying genuine empathy and warmth, participants wanted staff to treat them with respect. One participant described a “very hurtful experience” in which a psychiatrist interrupted their consultation to berate another patient: T’was a lot of noise in the corridor. . . . I was in the chair looking up to him and he opened the door and he shouted vulgarities at the patients, shut the door, and continued to talk to me for about two minutes before he said, “You’re not allowed out again” or whatever. But I thought it was so unfair to me for him to open the door and use the f-word on somebody that wasn’t well. . . . It was a very traumatic experience because I was in a bad state when I got there.

Another participant spoke of how a doctor, throughout a consultation, swung back and forth in a swivel chair with his feet up on a desk. His posture conveyed “arrogance,” disrespect, and similar to the previous example, a lack of consideration of the patient’s perspective.


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The contributions of two participants suggested that despite the overall emphasis on warmth in the patient–staff relationship, this relationship was also valued by patients because of the relative impartiality of staff. Discussing the involvement of family members in care, one participant stated, “They really get passionate about it. They don’t stand—, you know, how you have to stay impartial if you want to help somebody.” Another participant contrasted his ability to discuss his mental health difficulties with his wife compared to with his psychiatrist. He stated that his spouse tended to react with anger, frustration, or denial. In contrast, he was confident that whatever he discussed with his doctor, he would not “react in an emotional kind of a way.” Thus, although participants valued warmth, they did not want their relationship with staff to resemble their relationship with close family members. They appreciated having the opportunity to discuss their mental health difficulties with someone warm and sincere yet also impartial.

Care Should Be Collaborative Although they highlighted the importance of being informed about their care, many focus group participants went further still. They emphasized the need for collaborative decision making and power sharing. Having information was not enough; they also wanted to have meaningful input into decisions about various aspects of their care. Participants not only wanted to express themselves, they also wanted staff to be responsive and engage with them regarding their preferences: I tried to change doctors and I sent letters and letters. And I got nothing back. And this time, I sent letters and I got responses back for each one with a reference code. And then [names staff member], I don’t know if you’ve heard of her, very nice lady, she runs all the comments maybe. So she came down and said that my comments would be looked at.

When participants experienced staff as unresponsive, there were negative repercussions for their care. In contrast, when participants believed they had control over their care, it improved their relationship with staff and their willingness to be open with them: I was in for three months. I wrote and wrote letters to say that I wanted to move to a lady female doctor or somebody who would understand me. And nobody could do that. So I had to lie to get out. Unfortunately. I had a very negative impression of them until this time. There’s been a positive change on both sides in terms of I’m more approachable, in terms of giving out information, telling them the truth. All that sort of stuff about how I feel.

Participants indicated that they wanted to have input into various aspects of their care, including technical

aspects such as medication choice. They also wanted input into aspects of care that would usually be decided at a service management level, such as who would cover for a consultant during holidays. In addition, participants wanted to exercise control over aspects of care that are often simply assumed to be patient centered, such as involving family members: They’ve definitely come towards giving me what I need which is, you know, more responsibility for my tablets. And they give me more choice in what I’m taking. They’ve been very quick in changing my medication to what I would like it to be, so there’s been a definite improvement. I asked him, in case I get sick—I always had that from my other doctor—that if I got sick he’d tell you when he was going on his holidays and who his registrars were, they were good, they were bad. Or if you didn’t want to see a registrar, some other consultant would see you. Just in case, he’d always tell you. And I asked this particular doctor. “Oh that. I’m going away for a few weeks. That will all be taken care of while I’m away.” And didn’t tell me anything. I was sorry that I asked. My family aren’t being involved in the issues I don’t want them to be involved in and they are involved in the issues that I’m comfortable with them being involved in. And there’s a really open dialogue with me and the consultant and also the psychologist about what’s being discussed and what isn’t being discussed.

The contributions of some participants complicated the overall depiction of collaboration. One participant presented a nuanced understanding of what constitutes collaborative care. Although he wanted to have control over his care, he did not look negatively on attempts by doctors to persuade him to change his mind. He did, however, strongly object to a complete absence of dialogue. He spoke of his experience of being forcibly medicated, emphasizing that staff chose brute force over engagement: It was the art of persuasion that introduced me to Olanzapine. Whereas, in the public system, I was forced, physically forced to take it. . . . There wasn’t, oh there wasn’t even a question of the nurse saying, “Oh listen, just take it tonight and talk to the consultant in the morning,” or “Yeah, that’s okay, you can discuss it with your consultant.” It was just one-way dialogue. It was just getting—, forcing me to take it.

Some participants placed no emphasis on collaboration. In recounting the advice he gives to younger patients, one participant stated, “I just say, ‘Do as you’re told religiously,’ you know. Whether you like it or not.” Other participants similarly assigned a passive, trusting role to patients. They did not argue for greater patient input into


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Skelly et al. treatment decisions. One participant asserted, “Even though they say you’re the expert on your own care, you don’t have the medical know-all so therefore you have to trust that they are working in the best interest for you.” She went on to highlight how directiveness on the part of staff and compliance on the part of patients might further recovery: Sometimes you’re asked to do things and you don’t feel up to it or you don’t feel you’re ready for it, but I suppose without that push when would you ever be ready for it? So I suppose sometimes you just have to trust that they know what they’re doing and go with their experience.

Although some participants might, because of traditionalist conceptualizations of doctor–patient roles, choose not to assert themselves and collaborate in their own care, for other, younger, participants, not having the opportunity to collaborate in their care had an extremely negative impact. They felt belittled and were acutely aware of—and unhappy with—the underlying power imbalance: I felt like I was back at school, ’cause they were administering the drugs, I was to take the drugs. If I didn’t take the drugs it was my problem that I was coming back in. There was no sense of, you know, you have to have some part in what we going to give you: “Are you happy with what we’re giving you? Why aren’t you happy?” There’d be four or five different doctors and nurses and they’d be all sitting around you, all talking to you and telling you what this is and that is. And you just felt like, I don’t know, like you’re a school kid that was sitting on a little chair being told, “Now you’ve been doing this and now you should be doing this.” . . . It just seemed really kind of impersonal. I didn’t feel like I had a chance to somehow put my input into it or maybe even have any design in my own treatment. I know I was particularly unwell but it just felt like all the power was completely taken away from me.

Conceptualizations of doctor–patient roles were not entirely age-group dependent. One older participant spoke passionately about his rejection of the traditional doctor–patient power dynamics. He echoed many principles of the recovery and patient-centered models of care. He expressed deep-seated frustration that these principles had yet to be fully realized: I think we should slowly or quickly try get away from putting psychiatrists and their ilk high up on pedestals, where they almost become little gods in their own area. At the end of the day they’re doctors. And I think that they’ve— across the whole system, private or public—far too much power. . . . They need to be more hands on and getting away from the old fashioned, “The doctor knows best.” Sometimes

I know best, and I want that to be heard and I want to feel that I’m being heard.

The Inpatient Environment Should Be Safe Participants valued the sense of protection offered by the inpatient environment. For two participants, this sense of protection arose from being relieved of practical, everyday concerns. However, both participants linked feeling protected to institutionalization and a difficult transition from hospital to home. Nonetheless, neither participant suggested that the care environment or staff should seek to prevent institutionalization. Indeed, one participant placed the onus on the patient to gradually break away from the protection of the hospital environment and assert more independence. Participants spoke of hospital as a stigma-free environment in which they were safe to express themselves. Hospital was described as a space in which displaying emotion and having an illness were normalized. This description of hospital was in contrast to participants’ experiences of the outside world, where they felt they had to hide their emotions and illness or risk stigmatization: I think you can be as you are. If you’re feeling strange or acting strange, be as you are without—, no great judgment placed upon you that would be placed upon you if you were in a coffee shop, if you were in a bar, or if you were in, you know, people visiting the house. The great thing about [names service] is that you talk about things that you wouldn’t talk about outside. Like, you talk about your feelings and you go, you know, “I was in a bad—, I was low yesterday,” or “I was high,” or “I was—” etcetera, etcetera. And nobody—, everybody’s in the same boat, so it’s a really good atmosphere.

Participants depicted hospital as a safe space for the release of distress that they had to repress in the course of everyday life. Discussing difficulties in his family life relating to his illness, one participant stated, “It’s great to come in here, let it all out, because you keep that in for so long and it’s like a volcano building up, emotional kind of thing. And it’s useful to let it out.” Participants also spoke about aspects of the hospital environment that made them feel unsafe. One participant described his past experiences, “a long time back,” of a small proportion of staff who made patients feel fearful and “got a kick out of hurting others.” Speaking about more current experiences, participants raised the issue of segregation. Two participants spoke of feeling unsafe in hospital when “everyone’s grouped together.” Both participants specifically mentioned “drug addicts,” suggesting that they set this group apart from other diagnostic groups and considered them to be inherently threatening. With regard to gender segregation, conflicting data arose


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from the focus groups. One male participant spoke of women being exposed to inappropriate, sexualized comments in a mixed environment. However, a female participant favored mixed environments, stating that hospital life “should be as real as possible while we all try to get better.” Low levels of monitoring and lack of staff proactivity were also associated with feeling unsafe in hospital for some participants. These participants felt unsafe because staff were not providing a high enough level of care to other patients who posed a risk to themselves. One participant spoke of having to alert staff to dangerous situations and being exposed to such situations on a frequent basis, stating, “This is what we’re witnessing every day and it’s quite alarming. Quite alarming. . . . It’s only when . . . one particular nurse is in, then I feel safe.”

The Inpatient Environment Should Be Social The opportunity to interact with, and be supported by, other patients was highlighted as a positive aspect of being in hospital by participants. In response to a question about what was most helpful in the care he received, a participant said, I’d say that when I was in [hospital ward] that the socialization, where we’d all just sit around watching TV and having a cup of tea and a sandwich and having the chat. Then, as a result of that, you’d have an empathy with one or two people. Then you’d have a chat with them on your own and you’d go into things in more depth and you become a kind of a support for each other.

The same participant contrasted the benefits of interacting with patients with the stresses of interacting with staff. In interactions with staff, something—in his case, access to psychotherapy—was often at stake, giving rise to anxiety. Interactions with patients did not carry the same potential repercussions:

concerned that as indoor smoking areas were gradually being removed from mental health services, patients would no longer have suitable areas where they could meet and interact. Another participant spoke of how having limited space in a ward reduced the likelihood of patients spending time on their own and encouraged socializing. Overall, participants believed strongly that the inpatient environment should be designed and structured in such a way that patients could easily spend time with each other and provide mutual support: That’s something I think still all hospitals should look to . . . that in every ward there is some element of interaction and conversation taking place between the patients themselves rather than people going off to their bed or to their room and trying to do it all on their own. You know? And that doesn’t cost. There’s no resource cost in that, you know?

Best Practice Guidelines Should Benefit Patients Several participants spoke of the limited contact they had with their key worker, a staff member given specific responsibility for their care.2 Beyond the initial meeting shortly after admission, the key worker had no input into the care of two participants: My key worker has no dealings with me whatsoever and I may even pass her in the corridor and she doesn’t even say hello, never mind actually to discuss your care. you know. . . . You’re supposed to see your key worker within seventytwo hours and I presume I did because I’ve vague recollections of her talking to me, but lately when I’ve been well, in inverted commas,3 she has shown no interest whatsoever. At the point where I’m ready to sort of communicate. Participant 1 (P1): I’ve never met my key work nurse outside of the seventy-two hours, which—, the window is really difficult because that window is where you’re at your worst. P2: When you are at your most vulnerable. P1: You don’t tend to say what you want to say or you can’t really function properly in those seventy-two hours.

[Staff member] said to me today, “Do you want to fill in one of those depression forms?” And I had filled in one for [staff member] when I was due for CBT [cognitive behavioral therapy], and I was erring on the side of caution and sort of giving myself marks and suddenly she said to me, “Oh, you’re not ready for CBT.” And I said, “Bloody hell! I’ve been waiting fecking eight weeks to get some sort of therapy here and now because I’ve filled this form in—.” Whereas when you’re chatting one on one with a patient like that, who has a similar condition to yourself, you have none of those concerns, you know?

Another participant explicitly framed negative experiences of the keyworking system as the result of a tick-box (checklist) approach to the implementation of policy and guidelines:

In addition to speaking about the benefits of interacting with other patients, several participants spoke about how the hospital environment might or might not facilitate such interaction. Some participants were

It’s so easy to kid ourselves that we’re in compliance when we haven’t really sat down and thought carefully enough about, What is the role of this key nurse? What things should we expect from her? So that if she’s not doing those


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Skelly et al. things we can be able to measure that. . . . We’ve best practices and procedures and then we like to tell ourselves that we’re complying with them. Whereas, in the back of our mind, we’re thinking, “They’re not really that important anyway,” or “You couldn’t possibly do all that,” you know? And certainly I got that feeling from my key worker that she felt, “Well, with everything else I’m expected to do on the ward, I couldn’t possibly have time and energy to fulfill the role of the key worker as well.”

Another participant in the same group expressed a similar view that guidelines were complied with only in the technical sense, without any real benefit to patients: We’re faced with rules and regulations and care plans and this plan and everything else, and at the end of the day, it is all just paperwork. Very little of what is on or in those guidelines are actually implemented in a professional manner.

Thus, some participants were disconcerted by the failure of their key workers to follow through and remain involved in their care. Other participants framed such experiences as evidence that mental health services implement policy in a hollow, tick-box fashion, without improving quality of care from the patients’ perspectives.

Discussion Our findings are compatible with previous research, which emphasized the importance of the staff–patient relationship in service users’ conceptualizations of good quality care (Gilburt et al., 2008; Johansson & Eklund, 2003). Our findings add further weight to Johansson and Eklund’s assertion of the need for “a psychotherapeutic strategy and attitude towards patients” (p. 344) in general psychiatric care. However, as well as reiterating the importance of warmth, empathy, and meaningful engagement, our results also highlight the more fundamental issue of access to staff. Similar to Gilburt et al., participants in our study discussed staff unavailability as a barrier to communication and thus to good quality care. Conversely, they highlighted staff proactivity in approaching and engaging with them as a key component of good care. Access is not an issue that is resolved once a person is admitted to a mental health facility. Participants in our study spoke of feeling isolated and forgotten within the hospital environment. The issue of safety in the hospital environment has been addressed in other quality of care studies. Participants in the study conducted by Gilburt et al. (2008) focused on safety from physical harm as a component of good care. Johansson and Eklund (2003) described relief from pressure as an important aspect of hospital care. Participants in our study focused on both safety from physical harm

and a more figurative form of safety that allowed for selfexpression, catharsis, and escape from daily pressures. Indeed, our proposed category of “safety” overlaps with the themes of “being helped to reduce the shame” and “being looked upon as like anyone else” proposed by Schröder et al. (2006). The emphasis in mental health services has traditionally been on the safety of patients from self-harm or harm from other patients, as well as on the safety of staff from patients. Less attention has been given to the creation of a “therapeutically safe” environment in which patients feel at ease, able to share, and unashamed of their mental health difficulties. That care should be collaborative is a cornerstone of the recovery model and PCC. However, our findings regarding collaborative care are complex. Some participants wished to exercise a high level of control over their own care; others expressed more traditional understandings of doctor–patient power relations. These differences possibly depended, to some extent, on generational factors. It would appear that some Irish service users, particularly older adults, have not been impacted by the rhetoric of empowerment that is increasingly prevalent in the mental health sector. Service users cannot be required to be actively involved in their own care. However, service providers should be mindful that collaborative care might provoke anxiety for some service users, who feel ill-equipped to participate in decision making. They should seek to facilitate service users in expressing their wishes. Services users who appear not to desire input into their own care might in reality have difficulty expressing those wishes because of feelings of unworthiness or intimidation. Our findings present two comparatively novel aspects of quality of care from the service user perspective. First, service users are a major source of support for each other within the hospital environment, which was also noted by Gilburt et al. (2008). The participants in our study emphasized that the inpatient environment should be structured in such a way as to facilitate and encourage interaction between service users. They were fearful of the impact the loss of some communal spaces—such as smoking areas—would have on service user friendships and, consequently, on the inpatient experience. The expertise of service users, their ability to support each other, and the importance of peer support in recovering from mental illness all feature prominently in the recovery model. They are neglected by the medical model, which assigns “expert” status to medical professionals and a more passive, compliant role to service users. A second comparatively novel finding is that the implementation of best practice guidelines does not necessarily improve the service user experience. For some participants, having an assigned key worker but having little interaction with this staff member seemed to negatively


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impact on their experience of care. An uninvolved key worker was not just a missed opportunity; it seemed to create a sense of void and even neglect. Other participants expressed frustration that key workers were assigned but lacked the time and the training to actually carry out the role. They were acutely aware of aspects of care that, although ensuring compliance with best practice guidelines, were tokenistic and of little benefit to service users. Just as participants wanted meaningful engagement with care staff, beyond cursory interactions during safety checks and medication dispensing, they also wanted meaningful innovations in care rather than hollow gestures that created an impression of compliance and modernity.

Application of Findings in the Context of the Recovery Model This article constitutes an example of psychosocial, qualitative research into the lived experience of mental illness as recommended by the recovery model (Mental Health Commission, 2005). The recovery model further recommends that service development incorporate the expert knowledge of service users. There are several means of utilizing research findings on quality of care from the service user perspective, such as ours, to guide service development. The most promising avenue is perhaps that of service evaluation instrument development. Rolfe’s model of reflective practice (Freshwater & Rolfe, 2004) encourages the conduct of internal, servicespecific research for the purposes of directing service development. We have reservations about the direct applicability of this model to quality of care from the service user perspective. In our research, we asked participants to discuss their experiences of care in general, not just of the service in which the research was undertaken. Moreover, field researchers were not members of any treating team. These design features allowed for relatively free discussion and reduced social desirability bias in the focus group discussions. It would be difficult for service users to openly discuss their experiences of care with familiar clinical staff members. Thus, locally conducted, service-specific, qualitative quality of care studies might not be the best choice for guiding service development. Synthesis of the results of studies on quality of care from the service user perspective would highlight a number of ways in which services could be developed to better conform to service users’ views on quality. However, such synthesis necessarily masks individual, as well as culture- and diagnosis-specific perspectives. Moreover, robust synthesis of qualitative data requires methodological rigor, transparency, and reasonably similar research questions in the studies to be included. Until a sizeable

body of such studies is amassed, it would be futile to attempt to carry out synthesis using one of the various techniques available (e.g., Thomas & Harden, 2007). Instruments measuring quality of care from the service user perspective can be used to monitor the progress of services in better conforming to service user preferences. Ideally, such instruments would be grounded in the results of qualitative synthesis. An alternative is to ground an instrument in a single, methodologically rigorous quality of care study and subject this instrument to an extensive field-testing and validation process. The process by which such an instrument is designed should be made explicit, to demonstrate groundedness in the service user perspective. Such an instrument would define and operationalize best practice according to service users. Service evaluation instruments grounded in the service user perspective offer several advantages to servicespecific, open-ended qualitative investigations. They are less time consuming, allow for direct comparisons across services, and if self-report, enable participants to share their opinions without being required to engage in an extensive discussion with a researcher–staff member. Such tools, for use with both inpatients and outpatients, have been developed and are utilized within the British National Health Service (Care Quality Commission, 2009, 2012). However, they are lacking in the Irish context.

Limitations Although we have highlighted similarities with previous research conducted in other countries and with somewhat different clinical populations, our findings are not necessarily generalizable to other cultural contexts or diagnostic groups. Recruiting from an independent mental health service limited the likelihood of including in our study socioeconomically deprived patients. However, our choice of recruitment center offered the unique advantage of a nationwide catchment area. Moreover, our sample was drawn from a relatively socioeconomically diverse population. Almost half of Irish adults have health insurance (Health Insurance Authority, 2012), and thus can access independent services. All participants in our study were recruited from a single service. The majority were current inpatients. However, many participants had experience of other services, both in the voluntary and public sectors, and both hospital and community based. Although profoundly unwell patients were not approached to take part in this research, participants in our study spoke of care received during periods of acute illness. Several participants had, in the past, been involuntarily admitted.


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Skelly et al. Finally, this study benefitted from the involvement of a service user researcher in the design and conduct of data collection. However, there was no service user researcher involvement in data analysis, despite recent advocacy of this practice (Gillard et al., 2010; Veseth, Binder, Borg, & Davidson, 2011). Veseth et al. argued that “tacit and implicit aspects” of patient narratives are more likely to be articulated by those who have had similar experiences. Nonetheless, in our iterative and transparent analysis process, we strove to become attuned to the intricacies of the service user experience.

Conclusion In this article, we provide an overview of perspectives on quality of care among service users in Ireland with a diagnosis of bipolar disorder or psychosis. The conduct and application of such research advances the implementation of the recovery model. Utilizing qualitative studies of quality of care from the service user perspective to develop service evaluation instruments is an important direction for future research. This will help ensure that services become recovery oriented and are guided in their development by service user expertise. Acknowledgments We thank Sinéad Boland, Paula Maguire, and Shane Kirwin for their assistance with recruitment.

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 disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by a grant from the Health Research Board, Medical Research Charities Group, and St. Patrick’s Hospital Foundation.

Notes 1. In the Irish health care system, the term registrar refers to a junior doctor undertaking training in a particular medical specialty. 2. The coordination of an individual’s treatment plan by a designated key worker is a quality standard for Irish mental health services, as outlined in Mental Health Commission (2007). 3. The idiom in inverted commas (i.e., quotation marks) is used to imply a lack of appropriateness or truth. In this case, the speaker used the idiom to question the truthfulness of describing himself as “well.”

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Author Biographies Niamh Skelly, MPhil, is a research assistant in St. Patrick’s University Hospital, Dublin, and the Department of Psychiatry, Trinity College Dublin, Dublin, Ireland. Rebecca I. Schnittger, MSc, is a research assistant in St. Patrick’s University Hospital, Dublin, and the Department of Psychiatry, Trinity College Dublin, Dublin, Ireland. Lisa Butterly, MA, is a research assistant in St. Patrick’s University Hospital, Dublin, and the Department of Psychiatry, Trinity College Dublin, Dublin, Ireland. Charlotte Frorath is a member of the St. Patrick’s University Hospital Consumer Council and board member of the National Service Users Executive in Dublin, Ireland. Craig Morgan, PhD, is a senior lecturer in the Section of Social Psychiatry, Institute of Psychiatry, King’s College London, London, United Kingdom. Declan M. McLoughlin, PhD, MRCPI, MRCPsych, is a research professor of psychiatry in the Department of Psychiatry and Trinity College Institute of Neuroscience, Trinity College Dublin, St. Patrick’s University Hospital, Dublin, Ireland. Paul Fearon, PhD, MRCPI, FRCPsych, is a clinical professor of psychiatry in the Department of Psychiatry, Trinity College Dublin, and St. Patrick’s University Hospital, Dublin, Ireland.


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Poor quality of life and functioning in bipolar disorder.

A mobile user-interface for elderly care from the perspective of relatives.

Service user- and carer-reported measures of involvement in mental health care planning: methodological quality and acceptability to users.

Collaborative care for patients with bipolar disorder: Effects on functioning and quality of life.

Bipolar affective disorder in Huntington's disease: A neuropsychiatric perspective.

Bipolar disorder, affective psychosis, and schizophrenia in pregnancy and the post-partum period.

Service user perspectives on the experience of illness and pathway to care in first-episode psychosis: a qualitative study within the TOP project.

All the world's a (clinical) stage: rethinking bipolar disorder from a longitudinal perspective.

Quality of emergency rooms and urgent care services: user satisfaction.