PhD Defence Eline te Braake | Towards what really matters for people with chronic conditions | Design of a self-management support guide from the patient perspective

Towards what really matters for people with chronic conditions | Design of a self-management support guide from the patient perspective

Eline te Braake is a PhD student in the department Biomedical Signals and Systems. (Co) Promotors are prof.dr.ir. M. Tabak and dr. C. Grünloh from the Faculty of Electrical Engineering, Mathematics and Computer Science, (EEMCS) University of Twente.

This thesis aimed to increase our understanding of self-management from a patient perspective and, by engaging people with chronic conditions, identify how the self-management of people with COPD and RMDs can be supported. This aim is achieved through focusing on three different parts.  

            Part I: The current body of knowledge in healthcare practice and literature

In Chapter 2, the current healthcare practice for self-management was explored by developing a Pan-European service model for a self-management eHealth intervention for COPD in three countries (Estonia, Italy, and the Netherlands). First, it is showcased how the method of service modelling can be used for such interventions and revealed that a service model shapes, along with the dynamic practice. Furthermore, it was identified that not all people with chronic conditions are ready to take an active role in their care, nor are all HCPs ready to let go of their responsibility and control. However, empowerment and shifting (guided) responsibility are crucial to support one’s self-management.

In Chapter 3, a scoping review was performed to investigate the current body of knowledge of eHealth self-management interventions for people with COPD. We found that most eHealth self-management interventions support the physical aspect (e.g., self-monitoring), and other aspects (e.g., psychological resources) are underrepresented. Besides, we also identified that often a subgroup of people with COPD is included in studies (e.g., those with (digital) literacy). Thereby, excluding a group of people who may need the self-management support the most.

Part II: The current self-management strategies from a patient perspective

Chapter 4 investigated the self-management strategies that people with RMDs apply in their daily lives. Results show that people with RMDs already do a lot for their self-management. Also, diverse self-management strategies were employed. Showcasing that in this study, people with RMDs are intrinsically motivated to improve their situation and take responsibility for their condition by applying different self-management strategies, and, through trial and error, experiencing what works best for them to become active participants in their care.

Chapter 5 investigated the self-management strategies in the daily lives of people with COPD by utilizing the same survey used in Chapter 4. However, in this study, additional ways to disseminate and collect data with the aim of increasing response rates were explored. In addition, it was also investigated whether the data analysis instrument used for people with RMDs could be applied to the COPD population. Results showed that people with COPD also perform diverse self-management strategies. All strategies performed could be easily categorised using the self-management model developed in Chapter 4. This suggests that self-management might be disease-generic rather than disease-specific. The passive approaches (e.g., people needing to sign up themselves to participate) used, aiming to increase response rates, were not sufficient.

Part III: The future perspective of self-management support

Chapter 6 identified the problems of current practice and the needs of people with chronic conditions towards self-management support. Furthermore, through a participatory design process, consisting of 3 phases with 7 study rounds, a self-management support guide was developed. This guide aims to support people with chronic conditions in their self-management journey by providing them with information and letting them fill in several questions to holistic self-management categories. The guide enables making the first step towards self-management and can be tailored to the specific needs of each person.

Chapter 7 synthesizes the findings of the various chapters and answers the three research questions formulated in Chapter 1. First, we discuss the current literature and healthcare practice. Second, the self-management strategies of people with RMDs and COPD are discussed. Third, the future perspective for self-management was addressed, and four recommendations for this future perspective were summarized. Finally, we reflected on the involvement of people within this dissertation by mapping our engagement to the involvement matrix and shared our lessons learned.