A literature search and focus group interviews has been conducted to gather data to investigate what carers would find supportive in their everyday life. Furthermore, a co-design process together with carers of persons with heart failure has been conducted. In addition, input from researchers, research evidence, experts within both medical, social and technical fields have and will guide what is included in the support program.
The web-based support program will be situated within 1177, which is a Swedish national online e-health citizen information program.
The support program will contain modules with different themes such as “About heart failure” and “To be an informal carer”, “Emotional reactions” or Intimacy and sexuality”. Each module will contain written information, videos, lectures, relevant links and reflective questions. As an end product carers will be provided with a questionnaire aiming to help them to reflect on their own life situation as carers to a person with heart failure. It also aims to help them to identify their own needs of further support and help but it could also be supportive in itself. The main goal with the support program is to help carers become aware of themselves as carers and also about how this affect their life situation. One hope is that if carers feel supported and prepared, this will also affect the care and support which they provide for the person with heart failure in a positive way.
We are now at the end phase of the development of the different modules to be included in the support program. Different experts have been invited to produce information for specific modules. To ensure a professional product, a graphic profile has been developed for the program. This profile entails a logotype, and also information about fonts, and colors to be used in different media.
Beyond using the graphic profile for each module in the program, the modules has also been constructed in a similar manner and contain:
- Text with information about the current issue (for example about HF, being a carer))
- Videos with experts and carers on specific themes
- Relevant links
- Questions for reflection about carers own situation
The information and set-up of the modules has then been processed within the research group in several steps to secure a logical and stringent program. The development of the content has also been guided by user trials
In June 2019 we organized user trials. These were conducted to receive the potential user’s input on the support programs’ content and set-up. Participating carers were sent information about the overall program and on content. We also sent questions about what we wanted them to reflect on. We then organized two user sessions where the participants got the opportunity to share their reflections and suggestions for revisions of content. During the focus group they also got to see parts of the program online. Afterwards, their feedback was sent to the different experts that were responsible for the content. The experts then provided changes the content accordingly.
Thus, the development of content in each module has been a collaboration between experts, potential users and researchers. In order to make certain we have a program relevant to carers we will conduct a final user trial before moving forward with the randomized controlled trial in the autumn of 2020.
For this user trial we will invite carers to test the program online. They will be provided with logins so that they can access the support program from home. During the user sessions we will then ask carers to focus one or two modules each to receive in-depth feedback. They will be asked questions from a check list and their answers will be carefully written down and guide further changes.
- Updated July 2020 -