Engagement in assertive community treatment as experienced by recovering clients with severe mental illness and concurrent substance use

Recruitment and setting

Through initiatives from the Norwegian health authorities, 12 ACT teams were established in Norway between 2008 and 2011 to try out this model of service delivery. The Norwegian ACT teams were established 1–4 years before the interviews were conducted, and we chose to establish contact with the teams who had clients with the longest duration of engagement in ACT. Accordingly, the five teams who had been operating for 2–4 years were selected. Otherwise, the chosen teams did not differ from the other teams. In total, 349 clients had been included in the 12 ACT teams by the time of the interviews. About 60% of the clients had problematic substance use together with severe mental illness. This implied that about 200 clients could be characterized as having a dual disorder. We did not know exactly how many of these clients had been in treatment for more than 12 months or how many of these clients were in recovery. Eleven clients from five different ACT teams located in urban and suburban areas of Norway were recruited into the study, with 1–3 clients from each team. Contact was first established via telephone conversations with the team leaders. This contact was followed by an email explaining the purpose of the study, and a request for permission for the first author to interview clients who met the inclusion criteria for the study: clients with SMI and concurrent substance use treated in ACT teams who, after a minimum of 12 months of treatment, had made progress according to both the client and the team in terms of their quality of life and/or general functioning and/or substance use. The team leaders recruited the participants by consulting the other members of the team regarding whether they had patients who met the inclusion criteria for the study and who were both willing and able to go through interviews. If some of the participants were in poor condition at the actual time of the interview, we made agreements with the team leader and the participant to perform the interview with a therapist attending. The team leaders also made appointments for the interviews. We do not know exactly how many patients were asked to participate or how many refused to take part in the study. However, our impression was that most of those who were asked agreed to participate.

Participants

Data collection

In total, 20 individual interviews were conducted with the 11 study participants. The interviews lasted from 45 to 75 min, and all but one were recorded digitally and transcribed verbatim. An interview guide with specified topics was used to focus on the relevant experiences of the participants, including the influence of substance use, empowerment and relation to service providers. The main question in the interview guide was: “What was most important for your improvement after joining the ACT team?” As outlined in the analysis section, six overarching themes were established based on the participants’ responses. Service providers in ACT were stated as one of the important factors for improvement, and the follow-up questions were: “What are your experiences of being included by the ACT team?” and “What has been most important for you to remain in treatment?”

The interviews were conducted by the first author predominantly on a one-to-one basis in meeting rooms provided by the ACT team. The intention was to let the participants reflect freely on their experiences and to ask clarifying questions without making interpretations[20]. Two participants were accompanied by their therapist, for safety or support reasons. Nine participants were interviewed twice, with a 5–8-month interval between the interviews. One participant did not agree to a second interview, and another was not accessible because of a worsening of their mental illness. The reason for performing the second interviews after 5–8 months was that, although our intention when planning the study was to interview the participants once, when we completed the first set of interviews, we realized that some issues in the interview guide were not fully covered, and that some of the participants obviously could contribute more data than we had obtained in the first interview. This strategy was chosen instead of recruiting more participants for the study. Furthermore, re-interviewing the participants provided the possibility of having the participants reflect on their experiences over time. Performing a second interview also served as member checking[25], by letting all of the participants read the main points from the transcription of the first interview. In both the first and the second set of interviews, most, but not all, of the transcription was undertaken before the next interview. Between the first and the second interview with each participant, transcription was completed. The participants reported mostly on positive, but also on negative changes in mental state and general functioning between the interviews. None of the participants reconsidered or contradicted what he/she had discussed during the first interview.

Analysis

To address the aim of the study, qualitative data from the semi-structured interviews were analysed using systematic text condensation[21]. This method is recommended for descriptive and explorative analyses of a phenomenon in reports from different participants and for developing new descriptions of a phenomenon. The interview transcripts were read with an open mind as a means to bracket the researchers’ preconceptions and to focus on what the participants conveyed. By having the ACT teams recruit patients for the study, the first author (interviewer) was only aware of the sex and psychiatric diagnosis of the individuals, and that participants had a substance-use problem when included in the team. The first author was trained as a clinical nurse and had a master’s degree in health promotion, focusing on factors that influence improvement and well-being.

Initially, the transcribed text was read as a whole to derive an overall sense of the data. From this material, six overarching themes were established: substance use as a coping strategy, experiences of abstaining from substance use, control and stability, socializing, active participation and service providers in ACT. This last overarching theme was further elaborated. The second step was the identification of expressions in the dataset that were more informative than the initial codes that were developed during the early reading. The identified meaning units covered all the expressions used by the participants about ACT and constituted the basis for further analysis. During the third step, the following sub-themes were established: building trust through enduring involvement, receiving benefits, exclusiveness, safety net and personal responsibility. A text of condensed meaning was constructed for each sub-theme. Finally, the descriptions of the phenomena were revised.

The first author performed the interviews, transcribed the interviews, did the initial coding and identified meaning units. In addition, both IH and AL took part in the analysis by identifying initial codes and discussing the emerging themes. The NVivo10 software was used to output all codes to the worksheets, as well as to manage all data and to confirm that no overlapping of data existed within each sub-theme.

Ethical considerations

The study was approved by the Regional Committee for Medical and Health Research Ethics, South-East Region (no. 1196, 2010) before the clients were recruited. Each participant gave written informed consent to take part in the study and was informed that he/she could withdraw from the study at any stage. The interviews were conducted in meeting rooms provided by the ACT team. Two participants were accompanied by their therapist, which served as a safeguard in the sense that the interviews could elicit emotional reminiscing about sensitive issues. Allowing the team leaders to receive a written or verbal report of the progress of each interview served the same purpose, and provided information on practical matters, such as how long the interview lasted, the need for breaks and whether the participant felt comfortable after having finished the interview. It was important to emphasize that the intention of the interviews was research and not treatment. To provide anonymity, numbers instead of names are used when citing participants, and no recognizable information about the participants is revealed in the article.

Initial engagement

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.

Maintained engagement

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.

Initial engagement

There is evidence that engagement is not related to a client’s level of symptoms or degree of insight[26]. Therefore, clients should not be considered as being too unsuitable or lacking insight to such a degree that it is not worth attempting to engage them. Clients who actively resist service providers’ attempts to engage them might be perceived as counteracting treatment and the therapeutic process. Conversely, this can be a sign of resilience and a determined holding on to a personal perspective. Thus, although other services have found these individually minded people to be “problematic”, ACT often views them as being determined and strong individuals[27]. Although they shared the label of improving clients, most participants in our study expressed attitudes of both scepticism and relief when first approached by ACT. This is reasonable, taking into account their experiences of limited success in traditional psychiatric and substance-use treatment.

A model of a hierarchy of needs has been developed to try to understand the mechanisms involved in work with clients with SMI and their initial engagement. Needs located at the bottom of the hierarchy, such as food, shelter and physical security, are highlighted as target priorities[28]. This implies that if ACT can assist someone in sorting out their benefits or housing problems, the person will then be able to think about engaging in other activities, such as social, occupational and psychotherapeutic interventions. The fact that the participants in our study viewed service providers as displaying a caring manner and stable housing as a platform for developing trust toward the service providers can be perceived as supportive of such a model. As indicated by our study participants, being overall positive toward treatment implies that successful engagement can render clients more accessible to psychotherapeutic intervention. However, available research indicates that many ACT teams do not provide services that entail psychotherapy, or if they do, only a minority of their clients actually receive such therapy[12, 29, 30].

It usually takes about 1 year for an effective therapeutic relationship to become established in ACT, and 18 months is a key point by which positive changes should be expected[31]. Even though the mean duration of treatment in ACT for the participants in our study was 22 months, some of the participants had been in treatment for less than 18 months. Furthermore, the service providers, although enthusiastic, were inexperienced in the ACT setting. The participants in our study valued highly the service providers who were persistent in their efforts to establish the initial contact, even if a majority of the participants were reluctant at first. Their attitude toward the service providers and treatment in general became more positive after a trusting relationship had developed. This finding is in line with one qualitative study that examined nurses’ experiences of the ACT engagement process[32]. Findings indicate that, in order to recruit clients into ACT effectively, the time spent connecting with the client and working at the client’s pace and level of persistence should be emphasized. Another qualitative study focused on the initial engagement of “hard-to-reach” clients by a community mental health team that worked partly in an assertive outreach manner[33]. That study described both a client group that was largely invisible to local services and the daily experiences of treatment providers while attempting to engage such clients. The authors found that long, slow and persistent contact was a core feature of the work. Although neither of the studies mentioned above considered the client perspective, the findings that reflect the professional stance are similar to those of our study regarding the importance of time and persistence. In addition, the participants in our study viewed benefits as being equally important in their decision to accept ACT at first. One explanation for this result could be that the cited study[33] was aimed at examining the barriers to collaborative work and relied only partly on the ACT model regarding the treatment approach; therefore, the benefit issue was not prevalent in that study. A study of clients’ perceptions of first-year experiences of participation in ACT in which the majority of participants were substance users found that service delivery in a caring manner and with persistence and a service that aids in practical matters were the most important factors for engagement[18]. The findings of that study are similar to the results of our study regarding initial engagement in ACT.

The key principle of the latest version of the ACT model regarding client engagement is the establishment of a collaborative and nonconfrontational joint-decision approach. The aim of this method is to enhance clients’ intrinsic motivation to access the services of the team[1, 12]. The importance of assistance regarding practical matters serving as a gateway to accepting treatment initially was salient in our participants’ statements. Assistance in attaining stable housing and help with work possibilities and social benefits were also important. Some participants described this assistance as an aid in self-realization and as the foundation for trusting the service providers. This aspect seemed prevalent regardless of whether they were recruited to ACT from institutional care, were receiving traditional community mental health services, or were receiving no treatment at all. The second step of the ACT model in delineating procedures for the engagement of clients focuses on limit-setting interventions. This implies approaches aimed at ensuring that treatment needs are met, so that the risk of harm to self or others is minimized[1, 12]. With the exception of one participant who received medication via coercive means and another participant who had been hospitalized involuntarily between the interviews, none of the participants had experiences of limit-setting interventions since joining ACT. Nevertheless, some participants expressed concern regarding whether poor compliance with medication regimes could lead to a more restrictive practice by ACT. Criticism has been raised of ACT as being paternalistic and coercive[34, 35], but most available research reports ACT as being non-coercive[36, 37]. In addition, clients report generally high levels of satisfaction with ACT, and do not characterize themselves as being coerced[15, 38, 39]. The results of our study are well in line with those of the latter studies. Overall, our study participants clearly expressed that motivational interventions were used far more in the engagement phase compared with limit-setting interventions.

Maintained engagement

One study[40] introduced a measure of continued care based on the findings of an ethnographic study[41] that used community mental health centres and included the perspectives of both service providers and clients. The findings showed that knowledge, flexibility, availability, co-ordination and management of transition were conceptual mechanisms that were involved in promoting continuity of care. Compared with the perspectives of the clients included in our study, both knowledge and flexibility can be seen as overlapping with the sub-theme of exclusiveness in our study. The conceptual mechanism of availability represents, in a broad sense, the same as the finding of ACT as a safety net, according to the clients’ awareness of having someone to back them up.

The attachment theory argues that psychological development and functioning are affected by our earliest attachment to caregivers[42, 43]. Mental illness is likely to be a potent stimulator of attachment behaviour because of the threat to internal as well as external safety[44]. Similarly, people with substance-use problems often suffer from relational problems, regardless of whether they are the cause or consequence of the substance use[45]. When service providers function as attachment figures, they contribute to modulating anxiety and providing a secure base. This process is described as an interaction toward which both the service provider and the client contribute. Examples of this in our study were some participants’ attitudes in the form of reciprocal acts toward the service providers, because the clients felt grateful after being treated well. This resulted in feelings of commitment to following up on appointments, behaving well and being positive overall toward treatment. Furthermore, this was also understood as a way of helping themselves. These attitudes can also be perceived as a success in enhancing the clients’ intrinsic motivation to access the services of the team, according to the ACT model[1, 12]. The importance of a safety net was expressed both in the case of worsening SMI and in the case of escalating substance use. These aspects were more prominent in our study than they were in comparable studies[17, 18]. One reason for this discrepancy could be that persons who are diagnosed with SMI and also use substances are more prone to experiencing “ups and downs” than persons who are not using substances. The two studies cited above both included cohorts in which most, but not all, individuals engaged in substance use. The aim of one of those case studies was to determine how ACT contributes to the improvement of clients who receive the service, from the perspectives of both the clients and their service providers[17]. The main findings of that study were the persistence demonstrated by service providers in engaging their clients and the trust that the clients developed in their service providers. Similarly, our study identified exclusiveness as an important factor, including elements of commonplace communication with service providers and being treated respectfully, hence facilitating a trusting relationship.

The majority of the participants in our study welcomed the service providers into their home once a trusting relationship had been established. The participants acknowledged the delivery of services to their home or surroundings, and cited breaking down their isolation and the availability of service providers as important factors in this process. Because of the short duration of treatment in our study, it was difficult to illustrate the importance of the outreach working model regarding drop-out rates. Visiting clients at home provides the opportunity for more frequent meetings with the clients, who otherwise might not come to appointments, either because they are too disorganized or because they lack an understanding of their need for treatment. There is research indicating that this can increase engagement[46]. The willingness of service providers to meet the clients in their home environment, which is perceived as both a strength and a limitation, has been stressed in several studies[44, 47].

Clinical implications

Service providers need to recognize that clients with SMI who use substances may have attachment difficulties and that they may conceptualize service providers as family or friends after the initial phase of ACT. Therefore, longitudinal treatment and the inclusion of several service providers in the ACT team are needed. It is important to consider that clients with SMI and concurrent substance use may be more vulnerable, and more in need of ACT as a safety net, than non-using clients. It appears important to evaluate continually the use of home visits, and to work collaboratively with the clients to establish suitable venues and schedules. After the initial phase, service providers should consider the gradual transfer of personal responsibility to the client and evaluate this process together with the client in question. One implication of the results of the present study is that the service providers have to prove that they can be trusted in the initial phase of the client’s contact with the team. Trust can be established over time by flexible and highly motivated service providers who place emphasis on relational aspects and aid in practical matters. Receiving benefits from ACT is of importance when accepting this service. The introduction of ACT when new housing is available after hospitalization is one option; however, it is important to know that practical help, social contact and support are also experienced as benefits. As suggested by the results of this study, the feeling by clients with SMI and concurrent substance use that service providers in ACT believe they can improve their client’s quality of life, is of importance for feeling exclusive, having hope for the future and remaining in treatment. Services provided by ACT should also be established to meet clients’ needs for psychotherapeutic intervention when they are successfully engaged with the team. Looking ahead, the client’s awareness of supportive and emphatic service providers can prevent drop-out and facilitate strategies for future discharge from treatment. More qualitative research on clients’ perspectives of engagement in treatment settings other than ACT is necessary. Moreover, there is a need for additional studies to assess how clients with severe mental illness and concurrent substance use view inclusion in treatment and to determine the factors that are important for them to remain in treatment.

Limitations

The use of a sample of clients in recovery who were mainly positive toward ACT, and thus not representative of the full range of clients enrolled in ACT, may limit the transferability of our results, as may the interviewers’ focus on factors that influenced improvement and well-being. The Norwegian ACT teams have only been established recently. They consist of highly motivated service providers who are eager to work according to a new treatment model, and few clients were included in the phase of establishment of the teams. This could also explain some of the mainly positive experiences described by the participants in our study. Most of the interviews took place in meeting rooms in convenient locations provided by the ACT team. Therefore, the participants might have expressed themselves in mainly positive terms regarding their experience with ACT based on the setting in which the interviews took place. Furthermore, having service providers attend some of the interviews may have influenced the issues that were brought up. This study was not designed to attempt to evaluate the ACT model; rather, it was meant to explore the participants’ experiences, with a main focus on relational factors.