The data analysis from codes to global theme is illustrated in Table 2. This result section is structured according to the organizing themes: Interpersonal relationships between patient and therapist, the patient’s understanding of personal pattern of suffering, and personal motivation for self-agency in the recovery process.
Interpersonal relationships between therapists and patients
Asking the informants in this project about their reasoning for their choices, they expressed uncertainty both regarding treatment options available to them and explanations for their choices. Answers like “I’m not sure” and “I don’t remember” was quite common. One mentioned lack of information regarding rights to complain about the treatment:
“She could have informed me better about my rights, if I disagreed with her. (…) I had to figure that out by myself.”
Inadequate information includes lack of information, withheld information and an underestimated need for repeated information. Importantly, some informants reported that it seemed rather arbitrary what type of service that was offered and not so much as a ‘real choice’. Not all services were available, and furthermore, not all services were suggested by the therapists:
“I feel it’s kind of random which services you are offered, and what you end up getting, really, and if you get a service that helps, in a way. But it is of course difficult to know what helps.”
Treatment choices were thus suggested limited by availability and the information provided by the therapist, as well as the individual need for repeated information when illness and symptoms might affect the memory (43). This put forward a need for increased focus on shared decision-making.
However, the level of information is not the only parameter on the quality of an interpersonal relationship, which is considered important for the outcome of the therapy (44). Trust is vital in promoting this. In this study, the informants shared an overall feeling of confidence in the therapists. On questions about who they would trust getting advice from concerning their treatment choices, all mentioned their current therapist, along with other key persons in their life. Availability of the therapist was closely linked with descriptions of a positive relationship. One participant described his psychiatrist as easy to reach, and he felt he could take part in decisions concerning his own treatment:
“I really like that here. I can talk with (name) in the hallways, and if I have to schedule another appointment, or (…). Sometimes we talk for ten minutes without having an appointment, and I get a new prescription, and just talk. We do talk about different mood stabilizers, and what he recommends, and such. So it might be that I will start a new medication again that I told him that I wanted to consider.”
Nevertheless, there were also some examples of distrust and not mentioning sensitive issues to avoid uncomfortable situations. This could be talking about worsening of symptoms, or wishing to change or discontinue a medication. One informant described powerlessness in the relationship and the communication as a “game”:
“So I kind of picture that ‘NO’ ahead of me. And then I think, is it any use to bring it up, they decide. So, it’s kind of a game, I feel, where he has the power and I don’t have much to say.”
Building trust could take time. Several informants described having had trust issues with the therapist or health care system in general, often linked to a period of worsening and admissions, but then being able to repair the relationship over time. One participant described this:
“Yes, well, he has been there quite long, through the worst of times, I mean … the psychiatrist. It’s quite special. Now I think he is nice, but in the beginning I didn’t think he was nice at all (…) I didn’t like him.”
The informants reported that their illness and change of symptom severity could affect the experience of the quality of the relationship.
Despite the experienced trust, when it came to the discontinuation processes the informants reported being presented with certain conditions. Therapists could accept the wish to discontinue AP, however not without substituting it with other treatment:
“The impression I get is that, I will be allowed to be psychotic if I want to, but then I have to do other stuff, in order to maintain wellness in the psychoses. So then she talked about music therapy, and that it would be a good way to stay in therapy.”
In this way, therapists are substituting medication with other treatment options available.
Personal patterns of suffering and how choices are made
Participants in this study could choose between an increased number of treatment components, such as cognitive therapy, illness management and recovery skills training (IMR), individual job placement and support (IPS), music therapy, exercise and family group therapy. All of the informants confirmed the importance of having a choice in their treatment when asked directly. One informant said:
“It means so much, for me, to have a choice. Yes. To choose. To choose in psychiatry is incredibly important. And that they see possibilities. That it is not always that particular intervention, that one and only particular medication, you know! Because … they have to see the person in a wider perspective.”
Many of the mentioned services were unfamiliar to the informants, which made it hard to choose, both for the person as well as for their family or peers:
“I don’t know what they would have chosen for me. It’s hard to say. If you don’t completely understand, or if you don’t know exactly yourself, what actually helps.”
Increased psychosocial intervention options within mental health care were in this study intended to enable discontinuation of medication in a supportive setting. Yet, quitting medication was not an easy way out in a life with illness. The informants in this study were all struggling with different medication issues. Many described use of medication characterized by fear of unknown and adverse effects as the in the quote below:
“But there is no definite answer to what happens when you are taking a pill. (…) Because … then you might think all your problems are due to the medication. And then you think they will go away when the medicine is gone, and then you quit on your medication, and then they don’t go away.”
Thus the informants recognized that taking medication is complex. Using medication may result in adverse effects, but discontinuing may not be an easy solution. One informant explained how he knew his delusions included medication, feeling the pills were poison, and the pain and aching in his body were perceived as severe adverse effects killing him. This led to a wish to discontinue medication. Particularly forced medication was associated with delusions:
“And … I don’t think I would have taken any medication if I just got forced to do it. I think I would have become very skeptical if I was … That is, I would have had delusions about it, being forced to take medications I did not think were good for me.”
Wishing to discontinue medication might stem from delusions for some, however side effects from the use of AP must be recognized. Side effects experienced by the informants included losing control over body parts, one mentioned a feeling of drowning, most talked about gaining weight and feeling tired:
“I think it really sucks that I become more tired when I use that medication, and I also feel a bit like a failure when I use it. It’s like I have a defect.”
Patterns of suffering are individual, and gaining experience with the various effects medication has on one’s body is a learning process. Not everybody wanted to reduce all symptoms of their illness, like the one participant who said:
“Perphenazine works too well. It removes too much of the psychosis. When I’m psychotic I’m more friendly. I get more … naïve? I become … they called it pronoid. I sort of haven’t said completely goodbye to the psychosis yet.”
Other informants also described a similar relationship with their symptoms, in how hearing voices made them feel accompanied, and how they felt lonely without them.
Four of the informants in this study had aborted the discontinuation of the medication at the time of the interview. One informant described this experience, learning what worked for him:
“I think that someday I can stop. (…) But I know it is smart to use medication too. It sort of soothes the psychosis, so it makes it easier to cope, and do stuff. So the medication helps, no arguing there.”
Outside factors, like having work, were also important to consider in the process of learning about one’s own pattern of suffering:
“But I can’t risk getting ill again, since I have a job now … So I can’t risk losing my job … As long as I get just a little bit of Abilify, I’m safe. It might be that I could have coped on an even lower dose … we’ll see. I might consider that.”
The complex learning process involves getting experienced with your own illness; the symptom load, the adverse effects, and the outside factors, all contributing to decision-making about treatment options.
Motivation and personal agency in the recovery process
Recovery-oriented pathways require personal agency and responsibility in order to improve one’s life. Several participants expressed a feeling of having to “do the work” themselves:
“I have to do the work. I think a lot of people have helped me along the way, now it’s just me who has to do the work. That’s how I feel. And I intend to do it.”
This meant they had coping strategies such as avoiding too much stress, or staying away from drugs, or keeping the daily routine of sleep, rest, and eating well. Taking responsibility for one’s well-being implied risk of failure. Their coping strategies were challenged by their symptoms and illness. One informant described how the worsening of symptoms pushed away the care team so that they were unable to intervene:
“What happened to me first was that I started to be a bit bitter at psychiatry in general, I didn’t want anything to do with them at all. So I think it was a bit unfortunate they didn’t catch me at once, because I sent some messages to one of the … They didn’t know what to do, they said, then. But I think it was quite unfortunate they didn’t catch earlier that I was ill.”
Much of the therapy involves learning how to live with the symptoms. Sometimes people want to choose without the help from others, relying on their own experience and expertise, as one said:
“So, I have been very determined to deal with all of this by myself. (…) So I have been very independent.”
The risk concerning the need for independency when this involves not telling carers about symptoms is worsening getting out of control. Still, another outcome would be to increase the level of independent living. Both outcomes might offer valuable lessons in the process of recovery.
Many of the participants’ hopes for the future evolved around managing one day at the time. Some mentioned work, studies and perhaps having a family. One informant described her thoughts about her life:
“Now I just want to figure out the everyday life, and how to be around myself, and be … in my own company … And have a good time with myself, be happy with who I am, and sort of … get a self-image that fits with reality, and … not be so hard on myself as I have been.”
The same informant continued when asked where she sees herself in ten years:
“I hope I’m not dead … No, I hope I’m alive, that’s the only thing I hope for. I can’t say I have any … I hope I’m ok. I would have loved to have a husband, and family, but that’s kind of distant to me.”
This quote expresses both a need not to be so “hard on oneself” as a coping strategy consistent with an understanding of her own vulnerability, as well as a fear of not surviving the illness. The task of surviving psychosis and keeping hope for a better future is demanding.