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 multi-disciplinary 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.