eHealth support for physical activity and exercise training in people with COPD

Sammanfattning: Aim: The overall aim of this thesis was to apply user involvement and co-creation to generate knowledge on how an eHealth tool, including physical activity and exercise training, for people with chronic obstructive pulmonary disease (COPD) should be designed in order to be useful. A further aim was to explore preferences and ability to use an eHealth tool. Methods: There were several methods used in this thesis. In a feasibility study, an eHealth tool used in the home environment for people with COPD and long-term oxygen treatment was evaluated. The eHealth tool included support for physical activity and exercise training during a 10-week intervention, and was also used when healthcare providers conducted weekly e-rounds. In a cross-sectional study, the access to IT and technical devices by people with COPD was investigated through structured phone interviews. The questions used in that study were the same as from Statistics Sweden’s yearly survey on ICT usage in households and by individuals, in addition to questions on their perspective on the use of a future eHealth tool. A methodological study describing a digital co-creation process, which was guided by a participatory methodology followed. Six workshops were performed on a digital videoconferencing platform with end users (persons with COPD, relatives, a patient representative, and healthcare providers) of a future eHealth tool for use in COPD. This process was evaluated with both quantitative and qualitative methods. In a fourth study aiming to explore end-user preferences regarding a future eHealth tool for support in physical activity and exercise training in COPD, qualitative content analysis was used. Results: With some individual adjustments, and no adverse events, the exercise training with an eHealth tool at home for people with severe COPD was proven feasible. Additionally, erounds with healthcare providers performed remotely on a weekly basis enabled discussions regarding the included participants which further improved the feasibility. People with COPD were found to have high access to the Internet, and they used smartphones and applications (apps) to a high extent. The majority were frequent users of the Internet, and the most common equipment for this was a mobile phone or smartphone. The probability of using a future eHealth tool adapted for people with COPD was rated as high. The most common requirements were for content to be evidence-based and trustworthy, for it to enable communication and support from peers and healthcare providers, and for customised exercise programmes. The results of the overall descriptions of the co-creation process concerning general experiences of the process, process validity, experiences of shared knowledge, engagement, and the digital format of the workshops showed that participants were generally satisfied, and the experience described as enjoyable. The qualitative content analysis resulted in an overarching theme “fusing with rather than replacing existing support structures”. Cocreators believed there were clear benefits in combining the best of digital and existing support systems. They had high demands on the new tool being well-designed and having evidence-based content, all to deliver a high standard of support. Conclusion: The findings in this thesis may contribute to the use of co-creation methods in the development of future eHealth tools, leading to the tools being more user-friendly and adjusted to the intended user’s needs. It was shown that people with COPD have high expectations and a positive view on using eHealth tools, and that they could be a group suitable to use eHealth as a complement to existing support systems in pulmonary rehabilitation.