Patients' self-empowerment : patients and informal caregivers taking the lead

Background: It is rather common for patients and informal caregivers affected by chronic conditions to experience aspects of disempowerment being in a paternalistic structure. Patient empowerment is often understood as a power to achieve control over the determinants of a person’s quality of life, as well as being authorized by healthcare professionals and steered from a healthcare perspective on self-management and care. Patient self-empowerment, on the other hand, describes patients’ and informal caregivers’ power to perform activities that are not mandated by health care and to take control over their own lives and self-management with increased self-efficacy and confidence. Self-empowered patients and informal caregivers are described in the literature by many different concepts and can be the key to future development of health care and diffusion of innovation solutions for themselves and their peers. Knowledge about self-empowering behaviors and motivation of patients and informal caregivers is scarce. Further, the perspective of healthcare professionals and their attitudes, experiences, and workplace support when working with self-empowered patients and informal caregivers has not been researched extensively.

Aim: To further understand how patients and informal caregivers can take the lead in their own care and self-management, the overall aim of this thesis is to study the driving forces and self-empowering behaviors of patients and informal caregivers affected by chronic conditions, and how healthcare professionals and the healthcare systems meet these behaviors.

Methods: This is a mixed methods thesis with four studies deriving from two projects. Qualitative data collection was done through semi-structured interviews (study I-III) and focus groups (study III), and quantitative data was collected through surveys (study II & IV). Patients and informal caregivers affected by chronic conditions and with self-empowering behaviors participated in study I (n=15) and study III (n=48), and persons with Parkinson Disease performing self-tracking participated in study II (n=187). Healthcare professionals were respondents in study IV (n=279). The data were analyzed using five different approaches: Framework analysis (study I), Conventional content analysis (study II), Thematic analysis (study III), Direct content analysis (study III), and Descriptive analysis (study II & IV). Inductive, deductive, and abductive reasonings were used to process the data to draw conclusions.

Results: As self-empowered patients and informal caregivers, the second generation of e-patients generated health data and learned how to handle their situation from it. Further, they invented self-management solutions for themselves and their peers, as well as innovations to co-operate with healthcare professionals. This was done in line with support for their psychological needs; relatedness, competence, and autonomy. Still, to generate own data through self-tacking always came with the risk of being obsessed of their own condition. Other behaviors were experienced as forced upon the patients and informal caregivers and not completely voluntary, whereas some behaviors were wished to be expanded. This might lead to difficult situations with healthcare professionals, not having the time or understanding of these self-empowering behaviors. Still, there were overall positive attitudes from healthcare professionals, even though they lacked experiences of working together with self-empowered patients and especially informal caregivers. There were no existing workplace support or guidelines for meeting patients and informal caregivers with self-empowering behaviors.

Conclusion: This thesis makes a unique contribution by analyzing patient self-empowerment as well as healthcare professionals’ attitudes towards self-empowering behaviors. With a rather limited understanding of self-management tasks, healthcare professionals are here provided with a better understanding of self-empowering behaviors and needs among patients and informal caregivers. Self-empowerment will continue to influence the development of participatory healthcare. Hence, to understand the behaviors of the users of health care are essential to further develop towards experienced-based participatory design, person-centered health care, and support for healthcare professionals to partner with patients and informal caregivers in a joint empowerment.

List of scientific papers

I. Duncan Scott T, Riggare S, Koch S, Sharp L, Hägglund M. From Information Seekers to Innovators: Qualitative Analysis Describing Experiences of the Second Generation of E-Patients. J Med Internet Res. 2019;21(8):1. Paper was also included in the licentiate thesis.
https://doi.org/10.2196/13022

II. Riggare S, Duncan Scott T, Hvitfeldt H, Hägglund M. “You have to know why you’re doing this”: a mixed methods study of the benefits and burdens of self-tracking in Parkinson’s disease. BMC Medical Informatics and Decision Making. 2019;19(175). Paper was also included in the licentiate thesis.
https://doi.org/10.1186/s12911-019-0896-7

III. Duncan Scott T, Engström J, Riggare S, Hägglund M, Koch S. Meeting the burden of self-management: Qualitative study investigating the empowering behaviors of patients and informal caregivers. J Particip Med. 2022;14(1). A former version of the paper was included in the licentiate thesis.
https://doi.org/10.2196/39174

IV. Duncan Scott T, Riggare S, Bylund A, Hägglund M, Stenfors T, Sharp L, Koch S. Empowered patients and informal caregivers as partners? – a survey describing healthcare professionals’ perceptions. [Submitted]