In the following, results from (1) the lived experience team discussions on the program development, (2) the text reviews, (3) video reports on lived suicide experience, (4) the content of the program, and (5) the results of the summative evaluation three years after starting the project are presented.
1. Development discussions and joint consensus
Several topics regarding the online program development were discussed during the lived experience team meetings. A detailed table with all discussion topics that arose in the team meetings and the joint consensus is available in additional file 2. The development of the online program was finalized based on joint consensus. In the following, some examples of team discussions are given:
Aims: Key messages of the online program were defined for different target groups. One key message was that help is available. That led to a discussion whether help is available e.g. in view of waiting times for psychotherapy or is always helpful (e.g. negative experiences in inpatient psychiatric stays or outpatient psychotherapies). Despite these experiences, we have agreed to promote in the online program that it is worthwhile to seek help.
Concept: The team decided to create shorter video sequences and show video sequences on various topics of all eight lived experience team members in all five variants of the program, so that the topics are approached from different angles. Participants of the online program who e.g. indicated in the beginning to have lost a close person by suicide can decide to watch videos of people affected by suicidal thoughts and vice versa. However, we decided to make several distinctions based on the experience a person has stated with suicidality - because we considered that some statements may be more or less appropriate/helpful for some target groups.
Rejected ideas for content: One suggestion during the lived experience team meetings was to address the general attitude towards dealing with death and dying in society in the program. In the joint consensus, we decided against this idea because it would go beyond the scope of the program.
Content: Shame or fear of shame can lead to withdrawal behavior of persons affected by suicidality. The lived experience team did not find it helpful to "push" to disclosure and decided to leave the decision to the individual (autonomy). Therefore, respect for non-disclosure resonated in texts and video messages while at the same time the importance of support in a suicidal crisis and help offers were described.
Language/Content: The use of humor in the online program was controversially discussed. Some stated that humor helps in dealing with suicidality. In the online program texts, we have dispensed with the element of humor, since we do not know how the anonymous participants feel about these messages. We have agreed that the digital postcard messages may contain personal statements with black humor. Also, in the lived experience video reports humor as a strategy can be explained.
Structure: The wish of the lived experience team was that only people who are seriously interested in the topic should have access to the program. Also for this reason we implemented a login with email address.
2. Text reviews
Information texts on suicidality, help options and stigmatization were created and discussed in a first draft (MD, SL). A total of three text packages (between 9 and 15 letter size pages) were sent to the lived experience team by e-mail or mail. Five to six persons reviewed each text regarding comprehensibility, complexity, brevity, conciseness, quality, and completeness. All written comments were sent to the coordinator (MD) by a set deadline. Furthermore, it was possible to make oral comments by phone. Feedback was discussed in the next lived experience team meeting with the whole group and incorporated in the program texts. Overall, texts were described as comprehensive and concise. Some parts had to be adapted for the different target groups. In addition, simpler wording was suggested and incorporated. A summary of the written feedback of the lived experience team during the text review is provided in additional file 3. The team rechecked the revised information texts during the technical review of the program. The program texts were finally approved by the lived experience team as well as the project team.
3. Video reports on lived suicide experience
After the first team meeting, two persons decided against disclosing their lived suicide experience in a video report. One person decided to write an anonymous experience report. The decision not to disclose the lived experience in a video was made because it would have indirectly revealed the experience of the close suicidal person. The other person decided not to speak publicly about his/ her experience. Eight persons had decided to disclose a part of their lived suicide experience in a video report. During team meetings, they discussed the concept and formulated possible questions for the videos (see additional file 4). Finally, each person compiled his or her own questions (e.g., “How can I stay with the decision for life?”, “What helps me to deal with suicidal thoughts?”, “In which life situations did I think about taking my own life?”) in their preferred order. At the beginning of each video, there was a short introduction (name, age, profession, kind of the lived suicide experience). Some persons decided to use a pseudonym throughout the online program.
Table 3. Kind of lived suicide experience shared in the video reports.
Age group, gender
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Kind of the lived suicide experience
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70s, male
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One-time suicide attempt after a traffic accident
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60s, female
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One-time suicide attempt in early adulthood after a breakup
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20s, male
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Suicidal thoughts in a depressive episode
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40s, female
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Recurring suicidal thoughts
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50s, female
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Recurring suicidal thoughts in crises
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40s, diverse
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Chronic suicidality with suicide attempts
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50s, male
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Loss of mother by suicide
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30s, female
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Loss of father by suicide
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The videos and text messages aim to encourage others by showing them how to cope, and that there are people who experience or have experienced something similar. In doing so, the own story including the experienced feelings are told, but the focus should then be on how to deal with the situation and how to cope with it. Suicide methods or places should not be mentioned respectively were cut out afterwards when mentioned.
We filmed eight people on two days (four people on one day) to have enough time for reflection before and after the videos. We agreed on shooting the experience report in a one-take. The participants could then add or re-record an answer. There were no time limitations concerning the video length. The edited video sequences (each the answer to a question, length of the answer <1 minute - 12 minutes) were counterchecked and approved by the lived experience team member.
4. Content of the online suicide prevention program
The program 8 Lives – Lived experience reports and facts on suicide contains eight chapters composed of video reports about lived suicide experience, fact sheets on suicidality, exercises based on cognitive-behavioral models, and worksheets (see additional file 5). A user account is required and information on suicidality and lived experience videos are tailored to the kind of the participant’s suicide experience self-reported at the beginning of the program. There are five different variants of the program for participants with 1) suicidal thoughts, 2) suicide attempt, 3) loss by suicide, 4) concern for a close suicidal person, and 5) generally interested people. The help section is always visible during the program providing external professional support services via online links and telephone numbers of national and regional services, crisis lines and locations of emergency mental health services.
Technical check and final approval of the online program
The lived experience team tested the final technical implementation of the online program 8 Lives twice regarding user experience, technical difficulties or errors, content, design, and spelling mistakes. A structuring feedback sheet was used for this purpose. Changes were incorporated where technically possible. A responsive design was implemented, allowing the browser-based program being accessed through various devices (e.g. computer, smartphone).
5. Summative evaluation three years after starting the project
All seven members of the live experience team who are still actively involved in the project completed the summative evaluation questionnaire. The summative evaluation took place in March 2021, three years after the initial team meeting. The entire results of the summative evaluation (1: evaluation of involvement: enabling and hindering factors, 2: lessons learned from program development, 3: opinions on the lack of evaluation during program development) are presented in additional file 6.
5.1 Evaluation of involvement - enabling and hindering factors
The lived experience team members described the respectful contact with each other, empathy, acceptance, care and understanding for each other, openness, and transparency as helpful overarching factors. Overall, team members experienced the project as valuable, took pride in the project, and found the pluralism of experiences helpful. The team members described sufficient opportunities to contribute one's own concerns to the project as well as a capacity for consensus in the group. The possibility to communicate with each other outside of the team meetings was experienced as helpful. The team described the moderation and coordination of the group (MD, JB) as empathetic and caring. The possibility of contact with project members (MD, JB, TB & SL) in potential (suicidal) crises, beyond meetings on different communication channels (by e-mail, phone or in person) created a safety feeling among the team. The team described the continuous information about the team meetings and the status of the project as positive as well as the clear focus of the team meetings. The time between the team meetings was described as important, also because there was an opportunity to prepare and follow up on the different topics. The team members positively emphasized the varied possibilities of involvement, the extent of one's own involvement being flexible as well as the financial reimbursement.
As a result of the project, the team members described various personal changes, which were evaluated as positive: Dealing more intensively with the topic of suicidality and suicide through the project, becoming aware of own self-efficacy and ways of dealing with suicidality, developing a greater understanding of the own functionality of suicidality, and having grown through the project.
Some team members reported ruminating on issues after team meetings, as well as having unpleasant feelings or thoughts activated in team meetings. Team members describe this in part as emotionally taxing, in the long run, more as an internal coming into motion. The team members described that the strain could be well absorbed by the space in the project and team meeting framework. Being involved in the project and team where not much explanation was needed, was especially helpful as well as one-on-one conversations with lived experience team members or project members (MD, JB). To process the feelings and thoughts, some team members could additionally use psychotherapy with a psychotherapist independent of the project.
The time required for the project was mentioned as a hindrance: One team member mentioned that the project took too long. Two other team members thought that there was sometimes too little time in the team meetings or that there were too few team meetings. Two team members would have liked to have additional meetings that were not project related. One team member described difficulties with the dual role of a project team member and sometimes felt excluded, rejected, powerless, and not taken enough seriously in team meetings. The program was offline for the time of the evaluation and revision of the program. All team members report back that the continuation of the program was not discussed early enough, which led to frustration.
5.2 Lessons learned from program development
Lessons learned from the perspective of the lived experience team (N=7) three years after starting the project are presented in detail in additional information 6.2. The team members would have preferred a stronger public and patient involvement already at the application stage. More financial and personnel resources should have been planned, e.g., also for the continuation of the program. Team members recommended scheduling additional team meetings without a project focus. Interface between the technical and design online implementation and the project team could have been improved, so that persons who graphically and technically implement the program understand its concerns better and there is less loss of information and time loss.
5.3. Opinions on the lack of evaluation during program development
Retrospectively, five of seven lived experience team members were in favor of formative evaluation, one were rather neutral, and one team member was rather against formative evaluation. Team members noted that there was always an opportunity to provide feedback during the development process. In the summative evaluation, the team emphasizes different advantages of formative evaluation during program development, e.g., regular feedback could help to perceive own needs early enough, to recognize problems or difficulties faster and to take necessary countermeasures. Conducting a formative evaluation, the teamwork may have been even more intensive and improved. A possible formative evaluation was also described as a stimulus for self-reflection and as an appreciation of the teamwork. As an advantage, the team stated that regulated feedback would have made it easier to express criticism (e.g. for shy people). A formative evaluation was also seen as a possible relief for the group moderators (MD, JB). As a disadvantage of a formal evaluation the time factor was mentioned. Moreover, some team member stated as a disadvantage for a formal evaluation the interruptions of the (normal) workflow and the focus on teamwork instead of the issue of suicide/suicidality and program development (e.g., constant judging of teamwork could be annoying, being and working together could become artificial, and/or circling around teamwork). A reluctance to use questionnaires, especially tick-box ones, was also described. Formative evaluation was also described as a kind of "pseudo" feedback that can exert pressure, as well as creating a feeling like a "guinea pig". In the post evaluation discussion of the summative evaluation results, it became clear that it would be important to first explain the purpose for a formative evaluation (e.g. improvement of the work process and/or research) and to decide together in the team for or against the evaluation. If the team has decided to implement a formative evaluation, the team would like to discuss and determine the concrete form of the evaluation together (e.g., which questions, how often, etc.). The majority of the team members has spoken out in favor of an oral evaluation with jointly defined questions that should be formulated in an open manner. According to the team, the evaluation should have not taken place too frequently (not after each team meeting, rather at the beginning, in between and at the end of the whole development process). The evaluation results should have then been discussed orally in the team.
5.4. Researchers’ reflections on involvement
Additional to the summative evaluation of the lived experience team, we compiled reflections from a researchers’ perspective (N=3) on this in detail in additional file 6.4.
The lived experience team and project team agreed that in case suicidality increases in addition to the person’s health care professional the project team should be informed. We found it helpful to discuss the possibility of a deterioration of a team member’s condition at the first meeting. One person could not attend one lived experience team meeting due to an inpatient clinic stay (because of an increase in suicidality). We discussed with the person and the team how we should deal with the specific situation and have decided for a team meeting without the person. However, retrospectively, we would discuss how to deal with a possible inpatient clinic stay of a team member at the beginning when a lived experience team is formed because non-attendance due to an inpatient stay has an impact on the group. We established team rules, e.g. not to send potentially ambiguous e-mails regarding suicidal ideations or behavior to the project team, as it will be treated like an emergency which happened one time during program development.
From the researcher’s perspective, a good working atmosphere, trust due to the dual role of a scientists with a lived experience, good group cohesion, a clear structure, autonomy, transparency and continuous contact, accessibility of the project team, appreciation of opinions and ideas and shared consensus, giving feedback on text reviews and status updates, and being informed about possible risks of participation were helpful in working together with the lived experience team to develop an online suicide prevention program. It was very important to avoid peer pressure, e.g., on disclosure.