It is important that research questions are not just asked and answered by researchers and clinicians but that there is always input from patients who have the experience of living with the disease. We have completed a few studies where we asked for patients’ views on topics such as rollators, mindfulness, self-conscious emotions, sedentary behavior, and the transition from pulmonary rehabilitation to home. Through interviews, we found that people were initially resistant to using a rollator but, in the long-term, negative perceptions were outweighed by the functional and social benefits of rollator use. People with COPD reported that mindfulness has a role in disease management but that it should be an optional part of pulmonary rehabilitation. We also found that self-conscious emotions were associated with more anxiety and depression and that people with COPD reported lower self-compassion, higher shame, and less pride than healthy people. People with COPD thought that being sedentary meant a lack of exercise, which is a misconception. They expressed interest in receiving education about sedentary behaviour by knowledgeable health professionals in a formal program. Regarding the transition from pulmonary rehabilitation to home, patients and healthcare professionals identified social support, application of self-management strategies prior to discharge, and physical and mental health as key factors. 

Take home message: Patients should be encouraged to participate in the decision of whether or not to use a rollator and should be educated about the barriers and benefits. Healthcare professionals need to be more aware about the self-conscious emotions that people with COPD experience so therapies that target those emotions can be used to improve psychological symptoms. Short sessions of mindfulness (for example, breathing meditation, music or body scans) led by experienced trainers are preferred by people with COPD but their effectiveness for decreasing anxiety needs to be studied. Individuals with COPD should be educated and encouraged to reduce sedentary behaviour within pulmonary rehabilitation programs. More research is needed to develop interventions aimed at improving the transition from rehabilitation to home, with a focus on long-term behavior change.    

Publications

Patient Views on the Use of Rollators 
Exploring Self-conscious Emotions in COPD 
Perspectives of the Application of Mindfulness in COPD 
Perspectives on Sedentary Behaviour 
Transition from PR to Home