Telemedieret hjemmetræning til patienter med meget svær kronisk obstruktiv lungelidelse (KOL): Gensidig konstituering af teknologi, daglig livsførelse og professionel praksis

Projekter: ProjektForskning



Pulmonary rehabilitation (PR) involving exercise training is an important part of the non-pharmacological treatment for patients with COPD. Yet, patients with very severe COPD often have to decline PR, because the journey to the rehabilitation unit is too exhausting. An alternative to conventional rehabilitation is telemediated rehabilitation, and newest results from a Danish randomized controlled study (RCT) indicate beginning evidence that telemediated rehabilitation have same effect as conventional rehabilitation. Very few studies investigate telemediated practice as it is experienced by patients and their partners in the conduct of everyday life and in the health professionals’ practice. Therefore, this research project will explore patients’, their partners’, and health professionals’ experiences with home-based telemediated training for patients with very severe COPD to generate knowledge that can be used in clinical practice and future studies.
The overall theoretical framework in the research project is critical psychology, subsidiarily postphenomenology is drawn upon to understand the role of the technology in a practice. The methodological approach to the empirical research was critical psychological practice research, inspired by ethnographic fieldwork. Participant observation, informal interviews, and interviews were conducted with patients (11), their partners (4), and physiotherapists (6) at sites where the telemediated training was practiced: the homes and the different rehabilitation units. Seven of the patients, three of the partners, and five of the physiotherapists were followed eight months with continuously participant observation and interviews. The specific methods are ethnographic and a scoping review supplement the empirical analysis of the field by giving an overview of the scientific knowledge on the area.
Article I gives an overview of the limited scientific studies qualitative exploring how patients, their partners’ and health professionals’ experience home-based telemediated and supervised training. By analyzing the findings of the included studies in postphenomenology analytical framework, we found that sound, vison, proximity, and work tasks were mediated by the technology. Communication in the telemediated training or –rehabilitation sessions were focused on training. As the vision was mediated, seeing was for the health professionals to prioritize what to see. Proximity went from being physical to digital and made the telemediated training a possibility. The health professionals’ work tasks were mediated due to the mediated sound, vision and proximity, and a delegation of responsibility, from health professionals to patients, happened. By analyzing how technology mediates patients’, their partners’ and health professionals’ experiences and how the telemediated training and -rehabilitation practices are transformed, the changes become visible and hereby possible to reflect upon in the context of the health care system.
Article II shows that telemediated training, offered in the home as an alternative to conventional rehabilitation means that the patients get to train. Telemediated training can work as an agent of hope in holding on to essential everyday life activities or hope in being able to resume some of the activities. For some of the patients telemediated training could be experienced as burdensome and disciplining. The physiotherapists’ understanding of the patients’ circumstances and needs for rehabilitation changed when they got insights into the patients’ and their partners’ conduct of everyday life with very severe COPD. They noticed that the patients could benefit from training continuously instead of time limited. The article argues that telemediated training should be offered as part of a palliative approach for those severely affected by COPD.
By staging postphenomenology as theoretical and analytical framework, article III point out that telemediated training for patients with very severe COPD will imply specific trade-offs and hereby a transformation of the practice: The conduct of everyday life becomes a part of the training, and may sometimes compromise the private life, the physiotherapists are not always able to estimate the condition of the patients and therefore lower how much they push the patients in the exercises. The communication in the training sessions are focused on training, and reduce conversations being more oriented towards the patients’ disease than their illness experience. As the technology mediate sound, vision, proximity, and work tasks for both patients and physiotherapists, health professionals should be educated in what it entails to use a technology in practice and thereby be prepared on the transformations, that will happen underways.
This research project shows, that some of the patients with very severe COPD could benefit from a palliative approach, and that the telemediated training only should be offered if it adds meaning into the patient’s and their partner’s conduct of everyday life. The knowledge generated can be used when planing, organizing and practicing telemediated rehabilitation as a part of patients’ illness trajectory. With knowledge of the transformations when a technology is used in practice, this research project points to specific aspects to pay attention to. Training telemediated is a different practice than training conventional: It means possibilities and limitations that actively have to be noticed and considered. This research can be used in relation to patients with very severe COPD, their partners, and the involved health professionals, but the generated knowledge in this research project can also contribute to the discussions of practicing other telemediated services for other patients living with chronic and/or severe illnesses.

Kort titelTelemedieret hjemmetræning til patienter med meget svær kronisk obstruktiv lungelidelse (KOL)
Effektiv start/slut dato01/08/201514/07/2020