[Chronic disease and treatment burden for patients: the example of hepatitis C].

OBJECTIVES

We investigated the treatment burden of patients living with hepatitis during various phases of the disease (screening, announcement of the diagnosis, treatments, specificities of the relationship with physicians and health services, activities within an association).

METHODS

This research, conducted with the sponsorship of ANRS (National AIDS Research Agency), was based on the analysis of 20 individual interviews and group meetings with patients belonging to associations.

RESULTS

The treatment burden of patients living with HCV included health care activities (both care and cure), the search for information about the disease and its treatments, and self-prescriptions which determine the patient's lifestyle and hygiene. It also concerned cooperation with health care workers, job adjustm.ent as required by the medical prescription to adjust the job to the requirements and constraints of the other areas of activity and to the patient's desires and aspirations, based on numerous arbitrations and regulations. This work therefore resembled that conducted by Strauss and his team (1984) who considered the management of chronic illness in daily life to be a form of work; not only in terms of perceptions and meanings but also in terms of actions. However, we showed that this treatment burden affects all aspects of life.

CONCLUSION

These regulations help to prevent the risk of health and social exclusion and are designed to increase the patient's ability to act on themselves and their environment.