Purpose: To support family caregivers of persons post-stroke adequately from the start and to develop self-management interventions, we aim to gain a better understanding of family caregivers experiences at the time of acute care and therefore achieve a better understanding of how they manage their new situation. Methods and Materials: We chose a qualitative descriptive methodology using individual semi-structured interviews with eleven family caregivers of persons post-stroke. We conducted interviews retrospectively, between 2 and 10 months post-stroke, and analysed transcripts using thematic analysis. Results: The themes (1) being in survival mode, (2) feeling supported by family and friends, (3) feeling left alone by the treatment team and (4) insisting on information emerged from the data. Conclusion: During acute care, many self-management skills are required from family caregivers but are just starting to be developed. This development can first be observed as co-management with the social network and is often combined with shared decision-making. Information-sharing, foundational for developing self-management, is essential for family caregivers and should be supported proactively by health professionals from the beginning. Further, from the start, health professionals should raise awareness about role changes and imbalances of activities among family caregivers to prevent negative influences on their health.
Background: Self-management of exacerbations in COPD patients is important to reduce exacerbation impact. There is a need for more comprehensive and individualized interventions to improve exacerbation-related selfmanagement behavior. The use of mobile health (mHealth) could help to achieve a wide variety of behavioral goals. Understanding of patients and health care providers perspectives towards using mHealth in promoting selfmanagement will greatly enhance the development of solutions with optimal usability and feasibility. Therefore, the aim of this study was to explore perceptions of COPD patients and their health care providers towards using mHealth for self-management of exacerbations. Methods: A qualitative study using focus group interviews with COPD patients (n = 13) and health care providers (HCPs) (n = 6) was performed to explore perceptions towards using mHealth to support exacerbation-related selfmanagement. Data were analyzed by a thematic analysis. Results: COPD patients and HCPs perceived mostly similar benefits and barriers of using mHealth for exacerbationrelated self-management. These perceived benefits and barriers seem to be important drivers in the willingness to use mHealth. Both patients and HCPs strengthen the need for a multi-component and tailored mHealth intervention that improves patients’ exacerbation-related self-management by determining their health status and providing adequate information, decision support and feedback on self-management behavior. Most importantly, patients and HCPs considered an mHealth intervention as support to improve self-management and emphasized that it should never replace patients’ own feelings nor undermine their own decisions. In addition, the intervention should be complementary to regular contact with HCPs, as personal contact with a HCP was considered to be very important. To optimize engagement with mHealth, patients should have a positive attitude toward using mHealth and an mHealth intervention should be attractive, rewarding and safe. Conclusions: This study provided insight into perceptions of COPD patients and their HCPs towards using mHealth for self-management of exacerbations. This study points out that future mHealth interventions should focus on developing self-management skills over time by providing adequate information, decision support and feedback on self-management behavior and that mHealth should complement regular care. To optimize engagement, mHealth interventions should be attractive, rewarding, safe and tailored to the patient needs.
This study explores the evaluation of research pathways of self-management health innovations from discovery to implementation in the context of practice-based research. The aim is to understand how a new process model for evaluating practice-based research provides insights into the implementation success of innovations. Data were collected from nine research projects in the Netherlands. Through document analysis and semi-structured interviews, we analysed how the projects start, evolve, and contribute to the healthcare practice. Building on previous research evaluation approaches to monitor knowledge utilization, we developed a Research Pathway Model. The model’s process character enables us to include and evaluate the incremental work required throughout the lifespan of an innovation project and it helps to foreground that innovation continues during implementation in real-life settings. We found that in each research project, pathways are followed that include activities to explore a new solution, deliver a prototype and contribute to theory. Only three projects explored the solution in real life and included activities to create the necessary changes for the solutions to be adopted. These three projects were associated with successful implementation. The exploration of the solution in a real-life environment in which users test a prototype in their own context seems to be a necessary research activity for the successful implementation of self-management health innovations.
