JMIR Publications

ABSTRACT

Background:

Patient-centered care is achieved by integrating patients’ experiences and moving away from the patriarchal notion that the provider is in charge. Patient empowerment is an important aspect in this context, and it has been shown that patients and informal caregivers performing self-empowering activities contribute to the development of innovative solutions for self-management. Nevertheless, to date, most research on actively engaged patients with chronic conditions or informal caregivers has been conducted from a healthcare providers’ perspective. The focus has often been on the utility of these individuals and how they fit into the healthcare system, thereby neglecting self-empowering aspects of patient empowerment.

Objective:

This study aims to explore empowering behaviors of patients and informal caregivers in the context of self-management.

Methods:

Data were collected through 15 semi-structured interviews and six focus group interviews with in total 33 participants. The semi-structured interviews were analysed using thematic analysis and the resulting categories used as key concepts to guide a directed content analysis of the focus group data. Two theoretical frameworks, the model of illness related work and the taxonomy of burden of treatment were used to interpret the results. Analysis resulted in 14 categories illustrating patterns of empowering behaviors that extends on the model of illness-related work.

Results:

The 14 identified patterns of empowering behaviors are characterized by several exploratory and influencing activities performed by patients and informal caregivers over a long time. Participants expressed a desire to be more active in their care than is currently expected and supported by healthcare professionals. They also wished for a better support for activities imposed upon them by healthcare professionals. Several participants developed extraordinary self-empowering behaviors that helped them resolve obstacles in their everyday life as well as influencing their peers and the healthcare system.

Conclusions:

This study contributes with an in-depth analysis and emphasizes the richness of patients’ and informal caregivers’ self-empowering behaviors. To enable a transformation of the healthcare system to better support patient empowerment, health policy and healthcare decision makers need to understand and make use of this knowledge.