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

Abstract

Background 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. Methods 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. 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 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. Conclusions 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.

Codesign of digital health tools for suicide prevention: A scoping review

“…6 x articles focused on young people alongside adults, carers, parents and/or healthcare professionals [12,23,28,45,49,55]. Adults were identified within 6 articles with an age range from 24-61 years [5,38,40,51,59]. Two articles specifically discussed adult males [37,46].…”

“…Veterans were discussed in four articles [20,28,56,60]. Ethnicity was focused on the experiences of Indigenous cultures within 5 articles from Australia, New Zealand, Canada and USA [26,39,57,59,64]. 16 published articles and 8 items of grey literature did not specify which populations the authors were targeting, or it was implied that all populations were included [21, 25, 27, 29-34, 36, 38, 50-52, 65-72].…”

“…Study type [17][18][19][20] Randomised control trials (RCT) [21] Meta-analysis of randomised control trials [22] Clinical review [4], [7], [23][24] Systematic review and meta-analysis [3], [5][6], [25][26][27][28][29], [63] Systematic review [30] Mixed methods [31][32][33][34] Literature review / scoping review [36][37] Integrative review [38][39][40][41][42][43][44][45][46][47][48][49][50] Pilots / trials Author Demographics [35], [42][43], [47], [53], [58], [59] Young people aged 14-22 years old [62] Youth [54] Young females …”

Development of an online intervention on suicidality—providing knowledge and reducing suicide stigma

“…Alle 10 Arbeitsgruppenmitglieder beteiligten sich an der Erstellung der „digitalen Postkartenbotschaften“. Als laienverständlicher Name für die Onlineintervention entschieden sich die Arbeitsgruppe und die Projektmitarbeitenden für „ 8 Leben – Erfahrungsberichte und Wissenswertes zum Thema Suizid “ und nutzten den Begriff „Onlineprogramm“ statt „Onlineintervention“ [ 27 ].…”

“…Die trialogische Arbeitsgruppe war an übergreifenden konzeptionellen Entscheidungen beteiligt, wie z. B. der Auswahl und dem Grad der Tiefe der Themen oder der Art und Weise, wie die Videoerfahrungsberichte den Teilnehmenden präsentiert werden, bis hin zu Detailentscheidungen wie der Formulierung von Sätzen [ 27 ]. Bislang wurden Personen mit Suiziderfahrung häufig nicht in Forschungsprojekte bzw.…”