Chronic obstructive pulmonary disease, COPD, is one of the most common chronic and disabling diseases with substantial morbidity and mortality. With a steady increase in number of patients, and equal prevalence in men and women, the disease is now the third leading cause of death worldwide. Non-pharmacological interventions like pulmonary rehabilitation (PR) is highly recommended in treatment guidelines since they improve health and decrease health care use in people with COPD. Despite heavy evidence, only a small proportion of the COPD population is offered PR and as a consequence, novel strategies, including different eHealth tools are emerging. However, the process of co-creation in the development of an acceptable and sustainable eHealth tool has not been studied in people with COPD treated in hospitals.
An eHealth tool, My COPD, was recently developed by using digital PAAR methodology. The participants consisted of people with stable COPD of different disease severity, their relatives and health care professionals. In the present project we will further develop My COPD to also fit people with COPD who has been hospitalized due to an exacerbation for their COPD.
• To offer the PhD student co-creation experience together with people with COPD, treated at general and specialized hospitals.
• To produce evidence for practice for people with COPD with regard to perceptions, feelings and challenges experienced during and after participation in a co-creation process.
• To analyse how co-creators respond emotionally to different co-creational methods and outcomes.
The project aims to co-create the best suited intervention for evidence-based pulmonary rehabilitation through an application that includes strategies for behavioural change, together with researchers, end-users, care staff members, family members and policymakers, to enrich the PhD student’s learning with a distinctly multi-disciplinary and inter-sectorial nature.
A co-design process guided by a participatory appreciating action and reflection design (PAAR) will be applied. Work-shops will be used in order to further develop My COPD. Details on the methodology of the co-creation process will be established within the consortium collaboration. The PhD student will lead the development of the workshops planned. Throughout the whole program close collaboration with other PhD-students will take place.
Settings and participants: In a hospital setting, around ten persons with COPD who have been hospitalized due to an acute COPD exacerbation within the last six months will be recruited. Health care professionals working in specialized care, i.e. pulmonologist, physiotherapist, nurse, occupational therapist and dietician will also be recruited. Equal gender distribution will be strived for, as well as health care professionals with a specialist degree or great experience in working with pulmonary patients. Patients’ relatives and representatives from the National patient organization will also be asked to participate. A total of 4-6 workshops will be held and each workshop will include 10-12 participants.
Procedure: The goal with the workshops is to, together with persons with COPD and healthcare professionals customize My COPD to fit the needs and wishes of the participants and according to existing evidence.
Data analysis: Data from the workshops will be analyzed using qualitative content analysis.
Umeå University is one of Sweden’s largest institutions of higher education with over 34,000 students and 4,000 faculty and staff. We are characterised by world-leading research in several scientific fields and a multitude of educations ranked highly in international comparison. Umeå University is also the site of the pioneering discovery of the CRISPR-Cas9 genetic scissors - a revolution in genetic engineering that has been awarded the Nobel Prize in Chemistry.
At Umeå University, everything is nearby. Our cohesive campus environment makes it easy to meet, collaborate and exchange knowledge, which promotes a dynamic and open culture where we rejoice in each other's successes. The Faculty of Medicine, which consists of 13 departments, is responsible for biomedical research and courses in the field of nursing and health care and has an extensive research and graduate education in more than 80 subjects. The Department of community medicine and rehabilitation comprises six units; Occupational therapy, Physiotherapy, Geriatrics, Sports medicine, Rehabilitation medicine and Forensic medicine, all involved in teaching, research and collaboration with society and health care.
Prof. Karin Wadell’s research group is looking at the effects of different non-pharmacological interventions, mostly exercise training and physical activity, in people with pulmonary disease at the Department of Community Medicine and Rehabilitation. To improve implementation of evidence based interventions for this group of people, they have developed different eHealth tools. In the development phase different co-creation methodologies have been used. The research group consist of a mix of PhD-students, postdoc and senior researchers. Nationally she collaborates with several groups in the area of pulmonary rehabilitation.
Dr. Marlene Sandlund is an Associate professor at the Department of Community Medicine and Rehabilitation. Her main research topic is e-health and exercise for older people involving co-creation methodologies. Her research group involves an interdisciplinary mix of PhD-students, postdoc and senior researchers and international collaborations.
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