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

Background
Fear of stigmatization, self-stigmatization, and insucient information can lead to secrecy, reduced helpseeking, lower self-esteem, and lower self-ecacy among people affected by suicidality or suicide. Therefore, we developed an online suicide prevention program aiming to improve knowledge about suicidality and suicide stigma.
Methods
Inspired by the Australian program The Ripple Effect, a German team comprising people with lived suicide experience, 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 is qualitatively analyzed based on thematic
analysis.
Results
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 suicide experience in video reports by focusing on constructive ways of dealing with suicidality or a loss by suicide, conveying hope and encouraged people to continue living. Team members recommended greater public and patient involvement from the application stage, as well as more financial and personnel resources.
Conclusions
Through contributions to discussions and text reviews, the lived experience team shaped decisions in the program development process. While involving persons with lived suicide experience, 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. We recommend discussing the purpose and the specic design of the evaluation with a lived experience team in advance.