Development of an online suicide prevention program involving people with lived experience: ideas and challenges

Fear of stigmatization, self-stigmatization, and insufficient information can lead to secrecy, reduced help-seeking, lower self-esteem, and lower self-efficacy among people affected by suicidality or suicide. Therefore, we developed an online suicide prevention program aiming to improve knowledge about suicidality and suicide stigma. Inspired by the Australian program The Ripple Effect, a German team comprising people with lived experience of suicide, researchers, and clinicians was established for developing an online suicide prevention program. Therefore, we oriented on guidelines for evidence-based health information, for reporting on suicide, and on dealing with suicidality. The lived experience team discussed and developed concept, structure, and content of the program. This manuscript presents summaries of protocols from 16 team meetings and 3 written text reviews to outline the program development process. A summative evaluation 3 years after program development began was qualitatively analyzed based on thematic analysis. Between 2018 und 2021, the lived experience team (n = 10) discussed possibilities of support in suicidal crises, attitudes towards suicide, content, and design of the online program. In a structured process, six members of the lived experience team reviewed the content. Eight persons shared their lived experience of suicide in video reports by focusing on constructive ways of dealing with suicidality or a loss by suicide, conveying hope and encouraging people to continue living. Team members recommended greater public and patient involvement from the application stage, as well as more financial and personnel resources. Through contributions to discussions and text reviews, the lived experience team shaped decisions in the program development process. While involving persons with lived experiences of suicide, it is important to consider that suicidality is 1. emotionally challenging, 2. a stigmatized issue, and 3. that the aspect of safety must be a priority. A distinction must be made between the duty of care based on actual risk and inappropriate overprotection. Hereby, transparency, autonomy, and a clear structure appeared to be helpful. For further research, we recommend a structured formative review process of the development of the program. Additionally, we recommend discussing the purpose and the specific design of the evaluation with a lived experience team in advance. Trial registration German Clinical Trial RegisterDRKS00015071 on August 6, 2018. A team of persons with a lived experience of suicide and researchers jointly developed an online suicide prevention program. This online program addresses the taboo and stigmatized topic of suicidality from the perspective of people with lived experience. In our team are people who tried to take their own lives, thought about suicide, and people who lost a close person by suicide. For the program we wrote texts on suicidality and suicide on a scientific basis. In videos the team shared their experiences with suicide. The team told what helped them to continue living and gave them hope. Online program participants can read these texts and watch these videos. Participants can learn about suicidality and are encouraged to seek help if needed. During the development of the program, the researchers created a working atmosphere characterized by respect, empathy, transparency, and openness. Dealing with suicidality can be emotionally stressful. The team felt comfortable and safe. The team was proud of the developed online program. We describe strengths and weaknesses of the program development. We did not evaluate the involvement during the program development. If one wants to do this, the purpose should be explained to the team. The team should have a say in the design, such as what questions are asked. Our program gained enormously from involvement of people with a lived experience of suicide. Involvement is possible and necessary even with complex and sensitive topics such as suicidality. Antistigma work should involve those affected. Involvement is important to create a credible program.