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.

Vulnerability and Well-Being Decades After Leaving Care.

One of the most important goals of out of home placements is to reduce vulnerability and to enable well-being in the long term. This article hermeneutically reconstructs biographies decades after leaving-care to understand the impact of residential care experiences on selected dimensions of care-leavers' well-being, that were discovered in the data material. For this article three analytic areas were selected from the core of the narratives of former care leavers: Social networks, parenthood and state interventions. The selected findings on long-term outcomes presented here are based on a qualitative research project funded by the Swiss National Science Foundation on life trajectories after residential care (1950-1990). The authors have conducted 37 biographical narrative interviews with former children placed in residential care between 1950 and 1990 in the Canton of Zurich, Switzerland. The analysis of these narrative interviews was structured by the inductive procedures of Grounded Theory. Its foundation is the conceptualisation and dimensionalisation of data through inductive coding within the narratives. Research question: We mainly were interested in aspects of transitions exclusively relevant from the actors' point of view. The objective of this paper is to learn for the future by taking biographical experiences and long-term outcome in account. As we know residential care facilities have changed in last decades, but structurally some key figures are still continuing. They still interrupt the life course two times: when you start to the live in the institution and when you leave. One main question is how young people manage to integrate residential experiences through their life course and where they keep on struggling until the end of their lives. From a life-course perspective, the impact of social service intention on individual life courses, behind sending the individuals to such facilities, are important to investigate. They implicate relevant information concerning current practice and impact of placing children in residential care. Social networks and experiences of parenthood show why we must frame and accompany transitions out of care.

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.