The LifeStories project: Empowering voices and avoiding harm-Ethics protocol of a long-term follow-up study of individuals placed in infant care institutions in Switzerland

Little empirical data exist to guide ethical decisions when conducting research with vulnerable populations. The current study assesses a protocol designed to mitigate risks in a population-based cohort of 246 individuals placed in care institutions as infants in a non-selective 60-year follow-up. In total, 116 (47%) individuals chose to participate, of whom 53 (55%) reported positive effects of participation such as the opportunity to fill some gaps in their life stories, to better deal with their past, and to understand previous family dynamics. Only three individuals (2.5%) explicitly reported negative short-term consequences such as feeling upset as a result of thinking about stressful times, but they nonetheless rated the usefulness of the study as high. For six participants (5%), psychological counseling sessions were initiated as a support measure. Our findings suggest that risk of harm can be managed with a rigorous ethics protocol when conducting research with a vulnerable cohort and therefore enable the voices of survivors to be heard. A step wise approach in which increasing amounts of information were presented at each step, clearly operationalized passive decline, and direct and consistent contact with highly trained staff were considered key to mitigating distress. Keywords: deprivation; ethics; institutionalization; long-term follow-up; vulnerable cohor

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

A growing volume of research from global data demonstrates that institutional care under conditions of deprivation is profoundly damaging to children, particularly during the critical early years of development. However, how these individuals develop over a life course remains unclear. This study uses data from a survey on the health and development of 420 children mostly under the age of three, placed in 12 infant care institutions between 1958 and 1961 in Zurich, Switzerland. The children exhibited significant delays in cognitive, social, and motor development in the first years of life. Moreover, a follow-up of a subsample of 143 children about 10 years later revealed persistent difficulties, including depression, school related-problems, and stereotypies. Between 2019 and 2021, these formerly institutionalized study participants were located through the Swiss population registry and invited to participate once again in the research project. Now in their early sixties, they are studied for their health, further development, and life-course trajectories. A mixed-methods approach using questionnaires, neuropsychological assessments, and narrative biographical interviews was implemented by a multidisciplinary team. Combining prospective and retrospective data with standardized quantitative and biographical qualitative data allows a rich reconstruction of life histories. The availability of a community sample from the same geographic location, the 1954–1961 cohort of the Zurich Longitudinal Studies, described in detail in a paper in this issue (Wehrle et al., 2020), enables comparison with an unaffected cohort. This article describes the study design and study participants in detail and discusses the potential and limitations of a comparison with a community sample. It outlines a set of challenges and solutions encountered in the process of a lifespan longitudinal study from early childhood into the cusp of old age with a potentially vulnerable sample and summarizes the lessons learned along the way

Die oeffentliche Finanzwirtschaft im Wirtschaftskreislauf

Reprint from: Handbuch fuer Finanzwirtschaft, 3. rev. ed., Tuebingen (Germany, F.R.), 1975Bibliothek Weltwirtschaft Kiel C 72,671 / FIZ - Fachinformationszzentrum Karlsruhe / TIB - Technische InformationsbibliothekSIGLEDEGerman

Using participatory methods to develop and implement research on historical compulsory social measures and placements in Switzerland

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