The results of the study mainly emphasized how the study participants viewed important aspects of service providers’ contributions to engaging clients in ACT. The factors that the participants themselves envisioned as their own contributions to their engagement in the same service were also perceived as important, focusing on relational factors. The participants’ experiences are reported on a timeline from the initiation of ACT to the time of the interviews, in accordance with the following themes and sub-themes: the first main theme, Initial engagement, included the sub-themes Building trust through enduring involvement and Receiving benefits. The second main theme, Maintained engagement, contained the sub-themes Exclusiveness, Safety net and Personal responsibility.
The initial engagement in ACT was described by the participants either as a transfer from institutional treatment or as a gradual process of recruiting clients in their living environments who were not currently engaged or were poorly engaged in other treatments. Furthermore, inclusion in ACT mostly involved a process of gradual acceptance of an unknown treatment. Building trusting relationships through time and receiving benefits had the greatest impact on accepting treatment.
Building trust through enduring involvement
The majority of the study participants were previously diagnosed with paranoid schizophrenia and displayed scepticism toward the service providers who started to show up at their homes. Looking back on the time prior to ACT, many participants described experiences of illness and isolated lives together with struggles to manage daily activities. When ACT entered the scene, the participants started receiving daily follow-up with medication and aid in practical matters. This was described by several participants as a gateway into treatment. Resistance to treatment was prominent in the inclusion stage; however, with time, there was a tendency to join what the team had to offer by becoming more open and receptive. For several of the participants, this receptiveness was explained by a gradual awareness of the service providers’ good intentions. Participant 3 had been engaged in poly-substance use since his early teens and had been abstinent from substance use for some months, and he explained that he was in a bad phase of his mental illness when he was contacted by the service providers. He reflected:
‘I stayed mostly at home and became sick. So, when they [ACT] showed up something started to happen. I received medicines once a week. I saw they were eager to help, despite my bad condition when they entered the scene. The persons working in ACT are all right, and they are nice. They did not give up, and they put a lot of effort into it. I was not so co-operative in the beginning. I did not manage anything, and did not know what to do’.
Several of the study participants stated that the service providers visited them once or twice a week, even if they had previously rejected them. They kept conveying what they had to offer in positive terms, without being rude or intrusive. Descriptions of the service providers as being persistent and patient were prevalent. The time dimension and the offering of services in a caring manner seemed to be essential both for developing trust toward the new service providers and for building motivation for treatment. A common theme was the involvement displayed by the team; however, some participants reported experiencing a sense of control and surveillance that sometimes accompanied the treatment in the early phase of engagement. With time, these experiences seemed to be smoothed out, leading to the view of involvement as being mainly positive. It seemed as if the participants mostly experienced that someone was listening when the service providers launched strategies for taking prescribed medication. This issue was perceived by some as the most important difference between ACT and traditional in- and out-patient treatment, and of importance for building trust. In contrast, other participants also acknowledged the structure and predictability represented by institutional treatment. The participants had few experiences of coercion or limit-setting strategies in ACT, but they envisioned that coercive means could be used in cases involving lack of co-operation. Discussion of medication reflected an issue on which some of the participants expressed criticism toward ACT. As participant 7 explained:
‘In my opinion, as long as I seem to be functioning well, from the perspectives of both people outside and the service providers, I should be in charge of my medication. The treatment involves excessive doping. For example, to pull down your pants and show your bottom in front of a youngster in order to receive an injection … that is humiliating. But I’ve learned that opposing leads to more regulations ….’
Participant 9 was diagnosed with bipolar disorder and had a history of numerous admissions to psychiatric hospitals. He experienced a sense of intrusion and surveillance by the team during the initial phase; however, gaining experience with the service providers changed his attitude:
‘In the beginning I thought they [ACT] were too involved. But after a while it somehow smoothed out … concerning both positive and negative aspects. Now, I have mostly positive experiences with ACT, because I realize that they are people of good will. That ACT is not a kind of surveillance, but rather treatment. But it can feel like surveillance’.
The fact that repeated meetings with the service providers entailed attachment was experienced by six of the participants. This resulted in perception of the contact as being more personal than professional. Predominantly, having access to ACT over a prolonged period was expressed as being essential in the process of establishing a positive relationship with service providers. Scepticism toward ACT was associated with some of the participants’ feelings of being under surveillance by the team, or the appreciation of home as an arena free of treatment. It was important to have a place where the client could stay by himself/herself and just relax when they were sick and tired, although this view was only expressed by two participants. Some participants found the treatment provided during the initial phase unfamiliar and somewhat surprising. In addition to having a mental disorder and a substance-use problem, participant 11 was physically ill, expressed being a “loner” and described the inclusion in ACT as follows:
‘ACT showed up when I was discharged from hospital. They contacted me afterwards. I was very sceptical and thought it was some kind of trick. Eventually I realized it was a kind of self-help offer. I really appreciated it, because then I had someone to lean on. I felt so alone with my problems … I would sit by myself all day long. It took some time before I got to know them and viewed them as supportive. It was totally strange for me and unrealistic that someone should give me support. It was so unexpected’.
Providers of outreach treatment can also be viewed with suspicion when taking into account the many experiences of unsuccessful treatments that the study participants had endured in the past. Participant 11 was used to struggling alone with mental, physical and substance-use problems. ACT represented a novelty for this participant. Several months of treatment were needed before this participant was able to trust the service providers.
The majority of the participants emphasized the importance of having someone to lean on when trying to keep up with bureaucratic challenges. The search for stable housing and work possibilities was perceived as both important and demanding. For a large part of the cohort, the decision to accept ACT depended upon enticements that comprised the allocation of benefits. Receiving an offer of a new apartment was the main reason given by some participants for accepting inclusion in ACT. Participant 10 was hospitalized for substance-use treatment at the time of the interviews, and had managed to abstain from substance use for several months. Thinking back, he had a clear vision of what was most important for his improvement:
‘At that time I had a lot of problems. Then he [ACT team leader] knocked on my door, saying: “I offer you an apartment.” I thought, is it God who sent him, or what? That was when I was hospitalized for substance-use treatment. This I can’t believe, I thought. But it was a fact. He really had an apartment for me. That was the first step, and I felt it as something exceptional’.
The exceptional nature of the situation included the surprise of facing a service provider offering him improved housing. He described this as being almost an epiphany, or at least the first step of beginning to trust the service providers in ACT. The perception of ACT members as agents who provided initiatives for them to start managing practical matters was prominent among the participants’ descriptions. The service providers were seen more as catalysers and supervisors than as practical workers. Three of the participants described this approach as an aid in self-awareness. Despite several set-backs and a long history of hospitalization, participant 4 had his own apartment, and planned a re-entry into working life:
‘When ACT started visiting me I felt I got the support I needed. Furthermore, they gave me the kick to manage to sort out things on my own. ACT helped me in talks when meeting the bureaucracy. They stood by me, and pushed to get things through’.
However, the options that were offered by the service providers proved to be counter-productive if the client found them humiliating or unsuitable. An offer of improved housing had an inclusive effect on one of the participants. In contrast, the offer of a cup of coffee by the service providers in a café caused resistance and suspicion in another participant, who explained it as unproblematic to accept an offer of professional origin, whereas a contribution from private sources was experienced as more of a challenge, almost as an insult. After the service providers explained that the coffee was financed by the ACT funding, the participant felt more comfortable.
The study participants perceived important requirements for remaining in ACT mainly as being embedded in the strategy of the service providers, but to some degree as also being dependent on personal attitudes and the behaviour of the participants themselves. Clients’ experiences of recognition by the service providers as individuals with strengths and weaknesses and of being treated with respect, together with a feeling that service providers could offer assistance during periods of worsening mental illness or substance use, were crucial for adherence to treatment. In addition, there was a sense of the importance of the participants’ own commitment to remain in treatment.
The study participants experienced that the service providers were able to see them as individuals who deserved treatment, and not just as part of their job. Embedded in this perception was a sense of being pursued, treated respectfully, or seen as a chosen individual. This was not because the participants had a feeling of being superior to others, but because they experienced a greater sense of worth in ACT compared with traditional treatment, which explains the feeling of exclusiveness experienced by the participants. This was exemplified by participant 7, who had a long-term experience of both psychiatric and substance-use treatment and felt that it was important that service providers believed that there was a potential for improvement in relation to both mental health and substance-use problems:
‘One difference between ACT and traditional treatment may be that they [ACT] treat those they feel like treating. They can select which patients they shall include in treatment on the basis of conversations in advance. At least it feels like it. In a way, I feel like a chosen one, or a person in whom they see possibilities for improvements’.
The participants perceived the service providers as friends or associates just as much as professionals, and some expressions even reflected the view that ACT had become a small family for a few of the participants. Meetings with the service providers were seen as commonplace and ordinary, which seemed to render communication easier and more straightforward. Participant 1 explained that he had suffered from bullying in his youth, with subsequent isolation and experiences of anxiety and depression. He adopted the family concept in his description, and emphasized the different roles played by the team, and how it kept him in treatment and enabled him to imagine a future:
‘Most people are concerned with how things are with family and friends. That’s how it is, and for me ACT functions as a kind of family, making phone calls and taking care of things. It contributes to believing in the future’.
After a while, most of the participants allowed the service providers to enter their home arena, both for verbal communication and helping in practical ways, or simply just for spending some time together. Moreover, receiving services in the home arena clearly counteracted the isolation that many of the participants expressed. This seemed to be prevalent while speaking about the outreaching nature of the organization of the work, although a few of the participants were reluctant to receive treatment in their home. Some participants emphasized difficulties in communicating with family or friends during periods of severe symptoms of their mental illness, and found that ACT was better suited because they had a higher tolerance level regarding problematic matters.
The study participants shared some of their experiences of anxiety, depression and general discomfort, which could be related to periods of intense substance use. An awareness of future set-backs was expressed by most of the participants based on their previous experiences of living with SMI. However, contact with the ACT team was perceived as a possible way to manage life through different challenges. ACT was described by several participants as an agency that enabled them to live better with anxiety and depression. In a sense, the team was able to take over some of the responsibility, thus making it possible to obtain relief from some of the heavy burdens of living with SMI and substance use, which could worsen in the future. Participant 1 described feelings of relief, comfort and being offered treatment options by staying connected to ACT:
‘People are important to me. Especially, I experience the relation to ACT as a relief from anxiety and negativity in myself. I can put some of the burdens on them [the ACT team], because they are available. If you become psychotic or suffer a relapse, you have the right to receive treatment’.
Furthermore, participant 1 described the years spent living with SMI, substance use and challenging life events as a “container” of bad feelings experienced that were much larger than the ACT team could understand or sort out, and that this was something with which he needed to live. To him, not being able to foresee or work out when the container was overflowing and the anxiety was approaching was a challenge. The knowledge that the service providers would show up regularly and his awareness of the presence of the team in the background made him feel safe. Experiences of substance use and psychotic episodes together with admissions to and discharges from institutional care were prevalent in several of the participants’ statements. With reference to these challenges, they appreciated the steadiness represented by ACT. Participant 3 had been abstinent from substance use for some months, but still felt vulnerable and in need of support:
‘It is essential for me to have some support … like ACT. I will go on with it [ACT], even if I manage to stay clear of substance use. I will also use medicine, because it is good for me. You don’t need to be into substance use to get problems. When I get problems, or I get worse, then it feels safe to have someone behind me’.
When struggling with isolation and poor social networks, as the majority of the study participants did, they welcomed both the stability and the flexibility provided by the ACT team. In addition, they had come to know the service providers, so that making a phone call during a crisis was less of a barrier compared with what they had experienced in other out-patient services. In this respect, safety became important for reducing the participants’ vulnerability and as a motivation for further treatment.
Some of the participants made a point of not taking for granted the help they received from ACT. It was important for them not to forsake the service providers. To put them down would imply putting themselves down. They felt obliged to retribute the service via their loyalty toward the service providers. In a sense, this attitude took the form of an act of reciprocity that became a motivation to stay in treatment. Participant 10 had kept regular contact with ACT during his last two institutional stays, and expressed the following feelings:
‘I was hospitalized for one month for substance-use treatment. Then I was transferred to the current institution. I have not used substances since then. I have always thought that after all the effort they [ACT] have put into it … everything they did for me … I must not take it for granted. They have done a lot for me, so my thought is not to disappoint them. That has been a motivation. If I disappoint them, then I disappoint myself as well’.
Several participants also described following up on messages and keeping appointments with the service providers as prerequisites for staying in treatment. This implied that matters needed to be taken seriously, thereby ensuring that the team received positive feedback regarding their efforts. Furthermore, there were also statements of the importance of behaving well during contact with the team, as exemplified by participant 1, who expressed his fear of being rejected by the team because of “bad” behaviour:
‘Slowly, I have learned to know them [the ACT team]. What they look like, when they show up, and the sound of their voices. If they are nice or … or if I have been talking a lot of shit, so they have become tired of me. I am aware of not displaying stupid expressions, which can keep them at a distance’.
Several of the participants expressed that during the course of treatment they had realized that the ACT team was not the only factor responsible for their adherence to treatment. It was also up to the clients themselves to accept the treatment, make the best of it and contribute to changes within themselves. ACT was experienced as both care and, to a lesser extent, control and surveillance. The experience was perceived as being dependent on the clients’ own attitudes, mainly being positive toward treatment. Furthermore, the service providers were perceived as being motivating and positive minded by the participants, and such attitudes were experienced as a driving force to success, on the condition that they themselves, as service users, were willing to strive for a better life.