Patient engagement in chronic disease management: The pivotal role of partners

Introduction: To address social and economic costs of chronic disease, patients’ engagement (PE) in their health management is nowadays acknowledged as a key priority for healthcare systems. The current scientific debate is devoting increasing attention to the role of partners in supporting their loved ones in engaging in their care. PE is influenced by a number of patient subjective attitudes, such as knowledge of their health condition, self-confidence, and healthy lifestyle. Evidence showed that partners play a supportive role in helping patients both to cope with complex medical regimes and to manage changes in their daily life. Previous studies demonstrated that patient engagement is a process featuring different phases and specific patients’ needs along the medical course. This study aimed at describing the role of partners in supporting PE in their healthcare by detecting the specific supportive actions partners may enact to effectively address their loved ones’ needs along the engagement process. Methods: According to a grounded theory approach, we conducted 30 in-depth interviews with caregivers (N=10), patients (N=10) and physicians (N=10). The transcripts were thematically coded and subsequently categorized using Nvivo software till saturation of emerging themes. Results: Data analysis is still ongoing. Preliminary results suggested that partners play a crucial role in supporting PE in their care. Partners mainly address patients’ needs in the following areas: disease management (i.e., monitoring clinical parameters), health maintenance (i.e., following diet prescriptions), emotional scaffolding (i.e., helping in managing the distressing consequences of illness), acquiring knowledge(i.e., being an alternative interlocutor for health providers) and social inclusion (i.e., supporting the patient’s social role despite the limitations due to the disease). Moreover, partners’ supportive actions change in their aims on the basis of patients’ specific needs across the different phases of the engagement process. Discussion: This study corroborates and extends previous findings highlighting that PE is a complex and dynamic process. Communication and educational programs to favor partners’ support should include a dynamic vision of the actions needed in each specific PE phase.