Using Participatory Methods to Develop and Implement Research on Historical Compulsory Social Measures and Placements in Switzerland

Abstract

Many of the child welfare policies and practices in Switzerland before the law reform of 1981 were rather invasive and were exercised under a legal context that sometimes threatened basic human rights. The inclusion of survivors of such measures in the research process has been vigorously requested in Switzerland. Therefore, four individuals who had been placed in institutions as children have been included in the process of preparing a recently initiated, 60-year follow-up study of individuals placed in infant care institutions in Switzerland in the late 1950s and early 1960s. Using focus interviews and “think-aloud” methods, the interviewees commented on two parts of the planned research process: (a) how to contact the cohort, and (b) finalising the assessment instruments. Data were analysed using qualitative content analysis. Interviewees felt their participation was a sign of recognition of their experience and expertise. Their input contributed to the research in a host of ways. For example, they helped to make documents more understandable, identified errors and redundancies, and pointed out wording that might cause insecurities or negative reactions. They also pointed to shortcomings in some of the items used in the assessment instruments. In addition, they made significant contributions regarding how best to approach and work with the cohort. This study shows that, when researching historical compulsory social measures, the inclusion of formerly institutionalised individuals in development and implementation is not only feasible, but is of significant benefit to the quality of the research.

Development and Health of Adults Formerly Placed in Infant Care Institutions – Study Protocol of the LifeStories Project

“…This proved essential when having to respond to diverse biographical themes triggered during contact procedures. For example, as a result of their past experiences with authorities, concerns about being purposely misled or judged by the researcher surfaced regularly ( Lannen et al, 2020 ). Working with senior researchers was also key to responding appropriately to any questions, concerns, or potential distress that arose during contact.…”

“…This was achieved chiefly by consistency; the same researcher stayed in contact with the individual throughout the study. It was also achieved by the researchers’ efforts to be empathetic no matter what situations came up and to be “humanly available” to the participants ( Lannen et al, 2020 ). Trust was further built by the ability within the research team to deploy researchers with the same linguistic backgrounds as the study participants (Swiss-German, German, Italian, Spanish).…”

“…Interviewees’ feedback helped to make documents more understandable and identified wording that might cause insecurities or trigger negative reactions. They also indicated shortcomings in some of the questionnaire items that they thought were potentially misleading or not appropriate for the situation of the participants ( Lannen et al, 2020 ). In addition, they made significant contributions to how best to approach and work with the cohort.…”

“…In addition, they made significant contributions to how best to approach and work with the cohort. This participatory preparation showed that the inclusion of formerly institutionalized individuals in research is feasible and provides substantial benefits to the research quality on historic compulsory social measures and placements ( Lannen et al, 2020 ).…”

“…These ethical considerations and ways to mitigate distress were developed and reviewed in consultation with an external, independent ethicist ( Brauer, 2019b ). Furthermore, findings from the exploratory study outlined in section “Exploratory Study” ( Ryffel and Simoni, 2016 ) and the focus interviews conducted as part of the participatory study preparation ( Lannen et al, 2020 ) (see section “Participatory research preparation”) also shaped the ethical framework of the study.…”