The experience of being a participant in one’s own care at discharge and at home, following a severe acute exacerbation in chronic obstructive pulmonary disease: a longitudinal study

Purpose: In healthcare related to hospital discharge and follow-up, it is acknowledged that patient participation can strengthen self-management in patients with chronic obstructive pulmonary disease. However, the meaning of participation in care following a severe acute exacerbation is less described. Therefore, the aim of this part of a larger study was to explore patients’ experiences of participating in their care around discharge and in their subsequent day-to-day care at home. Method: The study was designed as a qualitative, longitudinal study. Data were collected by repeated participant observations and in-depth interviews with 15 patients within a period of 18 months post-discharge. A phenomenological-hermeneutic approach was used to interpret the data. Results: Before discharge, the patients struggled to regain a sense of control in their efforts to build up strength, and acquire sufficient clarity and confidence to face self-management at home. At home, the patients strived to comply with advice and encouragement in a struggle to stay motivated and confident, and to ask for help. Conclusions: With more knowledge about patients’ participation in care, healthcare professionals can encounter patients in ways that are sensitive to their specific care and support needs and, thereby, contribute to the promotion of patients’ health and well‐being.