“We all have a responsibility”: a narrative discourse analysis of an information campaign targeting help-seeking in first episode psychosis

Settings for the present study

TIPS in Stavanger, Rogaland (Norway) started their work in 1996 and was initially designed to test whether early timing of treatment could improve trajectories in first-episode psychosis [7]. The ED part of the program is made up of two main elements: broad and multi-targeted information campaigns directed at the general public, schools and professional health personnel, in combination with accessible early detection teams located in the specialized mental health care system [7, 23]. The program aims to change the help-seeking behavior of the population in the designated catchment area [10, 22, 23]. Second, early treatment is offered as a standardized 2-year standard protocol, which includes anti-psychotic medication, supportive psychotherapy and multi-family psychoeducation [7, 41]. This combination of using multi-targeted campaigns and ED-teams was groundbreaking when the intervention was first developed and implemented.

Data material and data collection

The data material consisted of all newspaper and Facebook ads, TIPS Info’s website (http://www.tips-info.com), posters, booklets and brochures (including one brochure directed at mental health workers) developed and used by TIPS from when they started their work in 1996 up until April 2018. The data was collected by the first author (H.H.) in collaboration with TIPS, Stavanger University Hospital. First, we arranged a meeting between J.O.J. and S.D. from TIPS Stavanger and H.H. to get an overview of the potential data material. TIPS provided both physical ads and posters, in addition to a data file containing relevant information material from their campaigns. Second, H.H. collected digital data through TIPS Info’s Facebook site (available from 2009 to 2018) and website. The complete data material was then checked by three of the authors, H.H., S.H.S., and M.V., for the following inclusion criteria: The data material had to (a) be directed at early detection/intervention in relation to first-episode psychosis (text and/or picture), (b) be marked with TIPS Stavanger’s logo and (c) be TIPS Stavanger’s (original) material. To avoid considerable incongruity in the material, we excluded longer texts, such as newspaper articles and radio- and video clips from TIPS Stavanger. Links to other Facebook pages (non-TIPS-material), courses, conferences or other institutions’ information posted on TIPS’ Facebook page were also excluded. The included data material was thereafter sent to J.O.J. and S.D. to assess whether it reflected the diversity and nuances in TIPS’ information campaigns. The final data material consisted of a total of 149 pages (collected between January and April 2018) representing various campaigns from 1996 to 2018.

Researchers

H.H., S.H.S., C.M., and M.V. were a part of the analytical team, and H.H., J.O.J. and S.D collected the data. I.J. related the study to the literature on early intervention. H.H. is a social worker and research fellow at Western Norway University of Applied Sciences and principle investigator of this study. S.H.S., C.M., and M.V. are clinical psychologists. S.H.S. and M.V. are associate professors at the University of Bergen, whilst C.M. is a professor at Western Norway University of Applied Sciences. J.O.J. is a psychiatrist and professor, and I.J. is a nurse and associate professor, both working at TIPS, Stavanger University Hospital and University of Stavanger. S.D. is a communication advisor at TIPS, Stavanger University Hospital. The researchers from TIPS have contributed to developing the TIPS intervention and information campaigns, and provided scientific oversight in the present study. All authors have commented on the paper and contributed to the final concept development.

Data analysis

Differentiated target group communications and changes over time

In the early phase of the information campaign (1996–1997), the information material was distributed to all households in the county of Rogaland. At the same time, a range of more demarcated target groups were addressed. This included at risk youth, persons who had already developed early signs of severe mental illness, as well as people who were likely to interact with them: friends/peers, parents, school counsellors/teachers, health- and social workers etc. The ads often had slightly different content depending on who the recipient was meant to be. An example of this is a quote from an ad directed at teachers: “It isn’t easy being a teacher when a student changes and you don’t know why” (1999). Another example is found in an ad directed at social workers: “Everyone who works at the social office will now and then meet clients with mental health problems” (1999).

The early ads (1996–1999) were directed both at people in general as well as people surrounding those who were vulnerable. More often than not, parents, or mothers in particular, appeared to be the most important target group. For example, in one of the ads the heading said, “He or she who meets them [the problems] face on will most easily put them behind them” (1998). The text in the ad continued: “Rarely will the person who is struggling with mental health problems be able to contact a doctor. Most of the time it is relatives, friends or coworkers who have to do it” and “You can get help in order to help”.

Another variation we discovered in the data material was that in the beginning (1996–1997) ads started out with an open invitation to contact the early detection team independent of their degree of concern. In time, the ads communicated a slightly more restrictive service—meaning that people should contact them according to the supposed degree of risk. For example, in several Facebook ads (2017) as well as the website (2018) three levels of danger were utilized: green, yellow and red—representing the severity of signs/symptoms. In addition, the later ads (approximately from 2009 to April 2018) also seemed less authoritative than the early ones, as they often used a more suggestive tone, e.g. “If you’re worried about yourself or someone else you can call TIPS” (2017).

Moreover, we found diversity in the way the concepts mental illness, serious mental illness and psychosis were utilized. In many ads, mental illness was used in the heading followed by a description of psychosis in the text. In some ads, both mental illness and serious mental illness were applied, while in others the term psychosis was used alone.

Three core categories, or themes, emerged when analyzing this diverse and dynamically changing pool of data for thematic content across ads, across time periods and across target groups. Here, a theme is understood as a basic pattern of communication across contexts. In the following, we present and detail the thematic structure that resulted from the outsiders’ analyses.

Themes

Insiders’ reflections on the findings

A tentative report of the outsiders’ findings was sent to J.O.J., I.J. and S.D. from TIPS to obtain the insiders´ perspectives and viewpoints on the findings. This provided us with an opportunity to utilize elements of discourse while maintaining multiple perspectives. Involving the researchers from TIPS in this process, helped clarify the intentions behind the data material, and it became clear that the outsiders’ interpretation of the material at times diverged from TIPS’ purpose and plan.

For example, the outsiders interpreted the message that psychosis is an illness in line with physical illnesses. However, the insiders wanted to underscore the same need for early intervention in mental illnesses as in physical illnesses. The insiders stressed that they did not have a “strict/traditional bio-medical” understanding, but rather a dimensional understanding of psychosis (a process, developing in stages). They also pointed out that they wanted to tone down the significance of genes or heritage as important causal factors of psychosis.

Secondly, the insiders stressed the need to consider the context when understanding the information material. E.g. in relation to the subtheme “to respond quickly”, they underscored that the mental health system in 1996/1997, before TIPS initiated low threshold and easy access, had been less accessible to people. Therefore, it was vital to change people’s attitudes towards the system by pointing out that they were welcome to seek help—which was a totally new signal from the mental health services at that time. They further pointed out that the outsiders’ understanding about negative consequences (e.g. domino) of not responding promptly differed from the insiders’ conception of psychosis as gradually developing in stages—and intervention could hinder worsening at any stage—not just the first. It should also be noted that at that time, psychosis (schizophrenia) was seen as an illness without hope of recovery.

A third remark was related to the subtheme “To step in”. The insiders pointed out that sometimes people lacked insight into their own condition/situation, meaning it could be unethical not to act against someone’s will. Finally, the outsiders’ depiction of mental health professionals’ expert position in the subtheme “To provide an answer” was incongruent with the insiders’ aspiration to convey hope and readiness to help.

The expert position

ED services represent an important step forward when it comes to providing prompt care for people who experience first-episode psychosis [8]. ED services vary in content, but often they combine medical treatment with psychotherapy and family interventions, thus representing a distancing from the traditional ways of understanding mental health issues based on strictly medical approaches [43]. However, as shown in the theme “knowledge is key”, professional knowledge has played, and still plays, a central role within ED services. The strategy of distributing knowledge about mental health services and symptoms of serious mental illness to the general population has been documented as successful in influencing help-seeking behavior as TIPS reduced DUP from a median of 26 weeks to 4 weeks [7, 9].

However, the dilemma we face in providing this kind of information as part of ED efforts is that it rests on an underlying assumption that potentially contradicts the competing interest of user involvement and collaborative practice. If information is the answer, lack of information or adequate knowledge (mental health literacy) must be the problem. Adequate knowledge in this regard, seems to be understood as professional, evidence-based knowledge. As such, experience-based knowledge held by people with lived experiences of mental health issues is not presented as an important part. For information to be effective in altering help-seeking behavior, health care workers then must construct an expert position—as providers of answers/solutions through their professional knowledge (and as part of a mental health system). Although the expert positioning was toned down in the later ads, our findings show that primacy was given to focusing on signs and symptoms, based on professional knowledge, indicating the recipients’ need for specific action (help-seeking). This way of providing information may enable people to make more rational choices about their health. Yet, a dilemma still emerges between how to express professional knowledge from such a position and simultaneously convey a belief in the importance of people having faith that they will be able to handle their own lives.

Moreover, by utilizing such a strategy actors involved are assigned rather distinct roles. In discursive approaches, roles can be understood as constructed through language and social interaction [44]. We have focused on how the roles have been constructed through the language (including pictures) used in the information material, and how this can be understood in the context of mental health services. As shown in the subtheme “to provide an answer”, mental health professionals can be regarded as experts holding the answers. As pointed out in “Insiders reflection on the findings”, the researchers with an insider perspective did not regard themselves as experts, their primary intention had been to communicate their willingness to help and provide hope. The outsiders’ interpretation of the data, however, was that such a position was established by e.g. portraying mental health workers as being specially trained and competent to act appropriately when mental illness was about to develop. The outsiders understood potential patient, on the other hand, to be positioned in rather passive roles as followers of the professionals’ advice. Again, this diverged from the insiders aim to contribute to people’s active engagement in their own health behavior.

These positions may partly be understood in light of the traditional understanding within mental health services, that psychotic patients often lack insight into their illness [45]. Research indicates that denial of being mentally ill is particularly evident in patients with first-episode psychosis [46]. In a qualitative study involving professionals and patients, Solbjør, Rise, Westerlund and Steinsbekk [47] found that lack of insight was one of the factors that made participation difficult. This concept has, however, been critiqued for being limited by the validity of the diagnosis [45], which, in turn, can be regarded as an inaccurate measure and highly dependent on the clinicians subjective assessment [48, 49]. Furthermore, insight is not a straightforward concept as it means different things to different people. On one side of a continuum, the patient may be expected to accept having a mental illness, and on the other side, it is expected that the patient become aware that something has gone wrong in his or her life [50, 51]. With only one part possessing the power to define this the starting-point for dialogue and shared decisions making becomes compromised.

However, new role constellations which embrace both professional and lived experience knowledge are emerging within mental health services. Collaborative practices which emphasize shared decision-making and focus on individual’s goals and life circumstances have shown promising outcomes for engagement, particularly for groups such as young adults with first-episode psychosis [52]. Implementing such models involves working with competing beliefs, values, power balancing and relational competencies [42]. Applying methods based on co-productive principles in designing information campaign messages, could contribute to present potential patients in more active roles in future information campaigns.

Making it clear, but not simplistic

Another dilemma following the provision of evidence-based knowledge about psychosis is how to express clear messages about the nature of psychosis when several different ways of understanding and explanatory models exist side by side. In fact, the understanding of psychosis ranges from psychosis as a chemical imbalance or brain disease to psychosocial explanation models, emphasizing the role of contextual factors such as stress, trauma, poverty, racism, sexism, etc. [53]. Accordingly, formulating clear, but not simplistic messages, about such a complex matter appears as a demanding task. As our findings showed in “(Almost) an illness like other illnesses”, the diversity of interpretations are also reflected in the information material. Different ways of looking at psychosis are likely to impact the role of the involved actors. The outsiders’ interpretation was that psychosis was partly portrayed as comparable to physical illness. This seems to communicate that psychosis is something that one should not be ashamed of, and in the same way as with physical illnesses—the victim is not to blame [54]. The effects on reducing stigma by stressing that psychosis is an illness like other illnesses have later been questioned [55, 56]. A literature review concluded that this strategy raised public fear as well as social distance towards people with psychosis [55]. However, there is some support that less stigma is perceived when applying descriptions of specific experiences, e.g. voice-hearing, as opposed to labeling diagnoses such as ‘schizophrenia’ [57]. The latter has been found to increase negative beliefs and attitudes in the general public [58], and research also indicates that diagnostic labelling negatively affects self-stigma [59].

Moreover, applying an illness-focus in information campaigns can be understood as placing the patient in a ‘sick’ role, which does not acquire much effort from the patient. Thus, the patient’s own actions are not regarded as an important part of treatment beyond seeking help. As pointed out under ‘Insiders reflection on the findings’, this understanding was not in line with what the insiders intended to convey. The insiders did not intend to base their description of psychosis on a medical understanding. Their intention had been to stress similarity to physical illnesses at just one point, namely—the same need for early interventions. However, the outsiders understood the illness-focus to be more pervasive. As a consequence of comparing psychosis with illness, passive roles risked being established on behalf of patients. As pointed out in the sub-theme “to tag along”, the patient’s main task then is to follow expert advice. This message does not match the knowledge we have of lived experiences of people with first-episode psychosis who were in contact with ED services which stressed the significance of self-efficacy [14].

In addition, our findings showed that psychosis can also be communicated as something dissimilar to physical illnesses. Psychosis was for example portrayed as a process that develops in stages. As such, the underlying understanding seems to be that psychosis is a result of several factors (biological, psychological and social)—the amount of stressors combined with the individual’s vulnerability (stress-vulnerability model) causes development of psychosis, or for some very few, a psychotic disorder [25]. By portraying psychosis as a process, the similarities with physical illnesses seem to be toned down (although some physical illnesses are understood to develop in similar ways)—and other aspects of psychosis were communicated. In this sense, psychosis may be viewed as an integrated part of the person, as opposed to some kind of ‘entity’ that just needs to be medicated away. Thus, people’s own meaning making processes and actions have a more central place in treatment as their faith is not only in the professionals’ [60].

This latter way to convey psychosis, points to more active roles for potential patients, which may be a more befitting way to present psychosis in information campaigns than focusing heavily on signs and symptoms. As such, there might be something to learn from approaches which put patients in more assertive roles, such as e.g. peer support. Peer support is generally described as a model for promoting wellness, focusing on strengths and positive aspects of people as opposed to an illness model focusing on symptoms and problems [61, 62]. Peer support is already one of the approaches utilized in early intervention services [63]. Although it was not very prominent in the information material, peer support is also included in TIPS’ intervention program. Within a mental health services context, peers may participate in mutual support groups where they can share common experiences (peer-to-peer support). Peers that have come further in their recovery processes may, however, be employed by the services (peer staff support) so that they can use their lived experiences to contribute positively by engaging people and serving as a bridge between patients and staff [62, 64–66]. Drawing more on knowledge-by-experience in information campaigns could provide a more nuanced picture of what psychosis is, and insight into important aspects to convey in information campaigns in order to reach the target groups. Additionally, elements of ‘peer staff support’ approaches might be utilized as ways of informing campaign designers of what people with lived experience of psychosis find to be helpful messages in this regard.

We all have a responsibility

In the theme “we all have a responsibility”, the outsiders in the analytical team found that psychosis was portrayed as something that should not be considered an individual concern alone, thus, the societal responsibility was emphasized. The societal level is not normally a level in which the mental health services operate on, at least not related to treatment of psychosis. By putting psychosis on the agenda, as TIPS did through the multi-targeted information campaigns, the mental health services became a visible actor in the community. The broad strategy was based on studies of available literature at the time they started, and such multi-targeted and repetitive campaigns are still regarded as effective in altering behavior [67].

Moreover, the findings showed that people in general were encouraged to take action as delayed help-seeking is considered a serious problem in treatment for first-episode psychosis. For example, TIPS stated: “We need your help…”. This inviting tone represents something unusual coming from the mental health services, as these services have not traditionally been very assertive in asking for assistance from outsiders. People surrounding the young adults were told to be on alert and ready to step in when a close one or somebody else was in need of help. Hence, the primary roles of people around the one that struggles can be seen as helpers of the mental health system. As such, family members or school teachers, GPs or others who had concerns on behalf of a young adult were asked to step in and contact the services if needed. By applying such an action-focus, TIPS goes further than some of the other mental health information campaigns, e.g. “Depression: Let’s talk” [68]. In addition, TIPS has established an accessible ED-team who are ready to answer phone calls and offer help at short notice. However, the encouragement to step in and contact the services may raise ethical considerations for people around a person who struggles if the person does not agree. In this regard, the insiders pointed out that it may also be considered unethical not to take action if the person does not realize that he or she is in need of help. Moreover, meeting such an action-oriented service may also be perceived as what people surrounding young adults who struggle need [69]. However, the roles applied to people in general in TIPS’ information campaigns seemed—from the outsiders’ point of view, primarily limited to serving as helpers for the mental health system. In this sense, the constellation of constructed roles in the information campaigns seem to sustain the conventional roles within the mental health system and between the system and its surroundings. As such, information campaigns could be improved by conveying more explicitly the importance of actors outside the mental health system—not only as helpers of the system, but also as support systems for the potential patients.

More specifically, research shows that families play a vital role in help-seeking related to psychosis [70–72] Yet, studies also show that family members often attribute early psychotic symptoms to ‘normal’ adolescent behaviors [73], temperament, drug use, or physical illnesses [74, 75]. Similarly, stigma towards mental health services seems to partly explain delayed help-seeking [76–78]. A meta-synthesis of qualitative studies also reported that family members often exposed feelings of despair and fear towards mental health services, combined with a general feeling of hopelessness [79]. This implicates that information directed at a rational level might be insufficient. Thus, the potential of direct future information campaigns also toward emotional aspects should be explored. Additionally, to make information campaigns more appropriate to different target groups in the surroundings (e.g. parents, teachers, or social workers), piloting of how different messages are perceived by various target groups, could be a way to make the information campaigns more relevant for its different receivers.

Methodological considerations

The present study draws on material developed within one program over a period of more than two decades. Thus, a strength is that it sheds light on shifting historical and social perspectives of how to present information for the public.

Also, as evident from the divergence in perspectives between the insider and outsider perspectives on the material, a narrative discourse analysis does not establish intentions. Rather, the promise of such methodology is to describe how meaning is created and transported between different actors and roles in a social system, as a basis for constructive discussions. We consider it a strength that we could include both perspectives in the presentation of the findings. The different positions as insiders and outsiders to the data material, provided us with proximity and distance that necessarily impacted the interpretations. However, it also became clear that the perceptions of insiders and outsiders were not always congruent. As such, we tried to make our different positions a transparent discursive element in the discussion.

Furthermore, these divergent perceptions underscore that the interpretations made by the analytical team were undoubtedly colored by the lenses of socially oriented researchers with particular interest in collaborative practice. By applying such an interpretative approach based on constructive epistemology, it was not our intention to reveal an objective truth—but to discuss the constructions in light of contextual information about the services.

However, a limitation is that we did not have access to any representatives from the information campaigns’ target groups. Another limitation is that most quotes and pictures applied in the themes are retrieved from the early ads and brochures. They were chosen as they were the most distinct examples of the themes we found. It is also a limitation that our sample did not include all the various types of information provided by TIPS, such as radio programs, video clips, or dialogue-based education for youths and meetings with high school counselors, which could have provided a more nuanced picture.