’I Was a Model Student’: Illness Knowledge Seeking and Self-care Among Finnish Kidney Recipients

Abstract

The customer based ideology currently in use in the Finnish welfare state, as elsewhere, has transformed health care. Responsibility for health, that used to be lodged within society, has become the responsibility of the individual. Self-care is part of this growing trend, where there is an inherent assumption that informed patients are more capable of making decisions about their medical regime, which in turn empowers them. Finnish kidney transplant recipients are, through various sources and forms of health information, encouraged to follow the moral imperative of engaging in certain types of health maintaining behaviour that safeguards the transplant kidney. Being informed and sharing illness related information with peers is a manner of showing gratitude towards the state; a way to, in some fashion, reciprocating the valuable gift of a kidney through caring. Taking my lead from Mol’s (2008) notion of care as a practice, as something that is done by all those involved in giving care, I ask how knowledge seeking and sharing on illness can be a form of self-caring. The aim of the article is, thus, to discuss what role illness-related information has in the process of caring for kidney failure. The data consists of in-depth interviews with 18 kidney transplant recipients narrating their illness trajectory, and additional information solicited on a number of central themes, two of which were the access to illness-related information and involvement in peer support activities.