Health literacy in the context of kidney transplant recipients: a multimethod study

Abstract

Health literacy (HL) can be understood as personal and social abilities required to find, understand and use information to make informed decisions about health. There has been a lack of knowledge about how kidney transplant patients navigate the health care system, find and assess health information and interact with healthcare personnel. The overall aim of this thesis was therefore to investigate multidimensional aspects of HL through different phases in the first year after a kidney transplantation. The work consists of two sub-studies using quantitative and qualitative methods. The Health Literacy Questionnaire (HLQ) was used to identify HL at 5 days, 8 weeks, 6 months and 12 months after the transplantation. Interviews and field observations were conducted to explore experiences related to HL in the first six months after the transplantation. The results showed that participants with lower scores on self-efficacy, transplant-related knowledge and general health had lower scores in several of the HLQ domains. The longitudinal approach revealed small changes in HL through the first year after the transplantation. Compared to five days post transplantation, we found an increase in HL at eight weeks. Six months after the transplantation, participants reported lower scores than they did at the eight-week follow-up. Through interviews, HL was presented as an active process influenced by context and personal factors as the participants moved between and within three phases; the trigger phase, the information phase and the response phase. The results may provide a new understanding of what motivates kidney transplant recipients to build and use a hierarchy of information resources. The thesis adds important knowledge in both a clinical and scientific context. Knowledge of which variables are associated with HL provides insight into vulnerable subgroups, while the longitudinal perspective reveal challenging phases in relation to several aspects of HL. The qualitative study sheds light on how and why the kidney transplant recipient choose one source of information above another. These findings are important both for the follow-up of kidney transplant patients and for future research.