Together for the Future – Development of a Digital Website to Support Chronic Obstructive Pulmonary Disease Self-Management: A Qualitative Study

Abstract

Background Symptom burden, impaired functional performance and decreased quality of life are not only consequences of the underlying physiological disorder chronic obstructive pulmonary disease (COPD) but also dependent on a patient’s ability to learn to live with and manage their illness. A digital website may be important for empowering patients with COPD to learn about and self-manage their illness. The aim of this study was to describe a developing process of a digital COPD-web as a part of a self-management education program for persons living with COPD. Methods A qualitative approach with a phenomenological perspective was used. The study was based on group and individual interviews with a multidisciplinary COPD-team and patients who developed the COPD-web. Results The developing process appears as a person-centred and holistic self-care approach both in content and development. Developing a digital COPD-web requires ongoing multidisciplinary collaboration and spawns a sense of pride that reinforces shared responsibility. The phenomenon consists of four constituents: learning by participating in development, the patient perspective as guiding approach, responsibility and motivation as driving forces and digital technology as a knowledge arena. Conclusion The results indicate that constructive collaboration between a multidisciplinary COPD-team and patients as co-creators in an ongoing creative and reflective process is a key concept to develop a digital COPD-web with a holistic approach. Digital resources in the future might create time and space for reflective conversations in a COPD-web with virtual chatrooms.

A feeling of not being alone – Patients' with COPD experiences of a group‐based self‐management education with a digital website: A qualitative study

“…Other studies have highlighted the importance of deepening the learning in a way that involves the participants on both an emotional and a concrete practical level. By giving the time to share and reflect over experiences with the group members (Anderson et al., 2010; Kjellsdotter et al., 2021), the feeling of not being alone may be supported. Furthermore, the essential meaning of learning to live with a long‐term illness concerns existential issues such as having a reduced access to the daily life.…”

“…The COPD website, as a complement to the COPD school, was created for future needs by health professionals in collaboration with patients with self‐experience of COPD. It was made self‐instructional and divided into three main themes: Facts about COPD, Self‐management and treatment, and Facilitating everyday life (Figure 1) (Kjellsdotter et al., 2021). Under each theme, there were several sections containing one or more texts, pictures, and films.…”

Participatory methods in a digital setting: experiences from the co-creation of an eHealth tool for people with chronic obstructive pulmonary disease

“…Meanwhile, at the two last workshops attendance was attenuated, possibly a result of decreased motivation. Motivation has been described as a driving force for people with COPD and health care professionals to participate in a co-creation process [ 44 ]. Training, or up-skilling participants, has been reported as important for engagement and creativity in many studies [ 8 , 41 , 43 , 45 ], which our results supports.…”

“…The positive experiences by the co-creators and moderators suggest that ownership is an important feature in co-creation. In people with COPD and health care professionals, feelings of responsibility have been reported as a driving force in co-creation [ 44 ].…”