The significance of informal caregivers in information management from the perspective of heart failure patients

Aims and objectives.  To explore patients’ perspectives on the significance of informal carers in their information management.

Background.  Being well informed is considered a prerequisite for the ability of heart failure patients to manage their lives at home. Developing knowledge about the informal caregiver’s role in patient information management is important, that is, accurate information adapted to the individual level of comprehension.

Design.  A qualitative approach using in-depth semi-structured interviews conducted with patients was used.

Methods.  Eight women and six men suffering from heart failure and with a mean age of 79·6 were interviewed. Data were collected one week after their discharge. A content analysis was performed.

Results.  The informal carer’s role in information management from the patient’s perspective represents two different phenomena. The first, information ambivalence, is related to the background of the informal carer. From what patients experienced, the process of information involvement throughout their hospital stay was affected by whether or not their informal carer had a health care background. The second phenomenon, information ambivalence, is related to the relationship between the patient and the informal carer with regard to information management at home.

Conclusion.  The informal carers were of great importance in the information management process because the patients relied on them so as to be able to devote their energy to managing their daily life.

Relevance to clinical practice.  Patients should be assessed with regard to their information management problems and to the role of their informal carers in this process.