Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers

BACKGROUND: Patient empowerment is an important concept and a movement toward person-centered care of patients with chronic conditions. Nevertheless, to date, most research on empowered patients or informal caregivers has been conducted from a narrow clinical perspective. Such research has mainly focused on how health care professionals can empower patients to increase self-care or compliance with treatment. Research on empowered patient and informal caregiver needs and self-empowering activities is scarce. OBJECTIVE: We aimed to explore empowering behaviors from a patient and informal caregiver perspective in the context of self-management and to understand how health care can support such behaviors better. METHODS: We used an exploratory, qualitative study design. A total of 15 semistructured interviews and 6 focus group interviews were conducted with 48 patients and informal caregivers. We analyzed the interviews using thematic analysis and used a directed content analysis to analyze the focus group interviews. RESULTS: A total of 14 patterns of empowering behaviors were identified that were characterized by several exploratory and influencing activities performed by the participants. The participants expressed a desire to be more active in their care than what is expected and supported by health care professionals. The participants also desired better support for activities imposed on them by health care professionals. CONCLUSIONS: To enable a transformation of the health care system to better support self-empowering behaviors, there is a need to develop self-management approaches from a patient and informal caregiver perspective.