Kidney failure, status passage, and the transitional nature of living with the disease: A qualitative study in Argentina

The span of kidney failure (KF) has been extended by advances in treatment. To elucidate the lived experiences of people with KF, we draw on Glaser and Strauss’s theory of status passage. Semi-structured interviews were conducted with 50 patients with KF and 14 health professionals, from two healthcare facilities in Buenos Aires, Argentina. The theory informed on the temporal dimensions of people’s passages and dimensions related to what actors know of this passage. We described the status passage as a sequence of transitions (starting dialysis, receiving a transplant, returning to dialysis) that have devastating effects on patient’s roles, and are accompanied with fear and experience of wasting time. Temporal aspects were crucial and planning was useless; indeed, timing of statuses was uncertain. With a transplant, certain roles and capacities could be regained. Some patients were not aware of the chronic nature of the disease and the ultimate reversibility of the transplant. Control over the passage was minimal because of the unpredictable prognosis of the disease but patients employed strategies to regain it. Control was even more limited for people who migrated to receive a treatment; whose lives were completely altered. Status passage theory signaled the overwhelming impact of the passage on all aspects of people’s lives, the uncertainty of the transitions, lack of control and awareness of essential aspects, and unexpected aspects of desirability, adding to our understanding of how people experience this disease and its treatments.

CARE LEAVERS’ PERSPECTIVES ON THE FAMILY IN THE TRANSITION FROM OUT-OF-HOME CARE TO INDEPENDENT LIVING

Findings from youth research have shown that, due to the development of the transitional phase of “emerging adulthood”, the family has become increasingly significant for young adults as a source of support and as a safety net. In contrast, care leavers are confronted with a relatively abrupt transition to independent living. However, international studies have shown that the family also plays a significant role during the status passage of leaving care — as an arena of concrete social relationships, as a normative model and ideal, as a biographical experience and memory, as a connection to family traditions and practices, and as an important contextual factor for resilience and identity formation. The first section of this paper describes the various links between care leavers and their families based on a literature review. In the second section, the biographical relevance of the family is highlighted based on the example of a qualitative interview study about the educational pathways of 20- to 27-year-old care leavers. The study shows the various influences of family links on the educational careers of young people during and after out-of-home care. From the findings, we derive some consequences for professional work with families in out-of-home care and for professional support and guidance during the status passage of leaving care.

Care Leaving and the Transition Jungle in Germany

This chapter presents the situation of care leavers in Germany within a so-called transition jungle and illustrates the difficulties of transitioning of young adults from residential care to independent living, focusing especially on education and access to vocational training and employment. Leaving care can be understood as a status passage in young people’s lives, during which the public welfare system produces accelerated transitions into adult life. This acceleration restricts the space and time available for individual transitions and processes of development, especially in the transition to work. The chapter will also outline two models of good practice and describe how care leavers can be supported within their transition to vocational training and work.