How do patients and health professionals perceive the role of family members in the decision-making process regarding the choice of a dialysis method? A qualitative study

Abstract

BackgroundTherapeutic decisions often seem to be the product of interaction between health professionals and patients alone. However, some realities make it essential to consider family members when examining care of patients, especially in the construction of therapeutic choices. Implementation of measures such as therapeutic patient education to make the patient an actor in his own healthcare, and the impact of disease on the patient's social and professional activities mean there is an important place for family members in a patient's care pathway. This study aims to examine the role of family members and the family environment in decision-making on treatment for patients with chronic kidney disease. It also analyzes how they contribute to the construction of patients’ choices on dialysis methods through their involvement in a therapeutic patient education program. MethodsThis study involved thirty-six semi-structured interviews: sixteen with patients and twenty with health professionals. Therapeutic patient education sessions, interactions and information exchanges between patients and health professionals, as well as participant behaviours, were also observed. Analysis was thematic. ResultsResults indicate that the factors influencing the patient's choice of dialysis methods include the family environment as the place where the disease is experienced, the need to maintain family ties, the advice provided by family members and their active participation in therapeutic patient education sessions and partnership between family members and health professionals in the decision-making process. ConclusionThis study highlights the reality of decision-making processes that can start from a non-hospital setting. Furthermore, it argues for greater consideration of the needs, values, and preferences of family members in mechanisms designed to promote patient participation in therapeutic decisions.