Dealing with challenges in taking active part in care after hospitalization due to exacerbation in chronic obstructive pulmonary disease: experiences of patients and their relatives

Background:

Living with severe chronic obstructive pulmonary disease (COPD) is often characterized by recurrent acute exacerbations (AECOPD) and increased need for hospitalization. After hospital discharge for AECOPD, many patients experience prolonged deterioration and difficulties in maintaining daily activities. Patients’ participating in own care is crucial but little is known about patients’ and their relatives’ experienced challenges and obstacles to succeed herewith.

Aim:

The aim of this study was to explore COPD patients’ and their relatives’ experiences of taking active part in their own care within a year after hospitalization.

Methods:

An ethnographic inspired field study was conducted among fifteen COPD patients and twelve relatives. Data were collected by participant observation and informal interviews at hospital. This was supplemented by in-depth interviews six and twelve months after discharge. A phenomenological-hermeneutical approach inspired by Ricoeurs’ theory of interpretation guided data analysis.

Results:

Preliminary results indicate that taking active part in COPD care implies managing periods with increased vulnerability created by the transition situation of hospital discharge, as well as transition situations occurring over time such as changed medication, home-oxygen therapy, job situation, domestic conditions, and family problems. Furthermore, analysis reveals efforts to navigate constantly normalizing everyday life while at the same time dealing with healthcare professionals’ claims to take active part in care.

Relevance to clinical practice:

Healthcare professionals can learn from patients’ and relatives’ experiences to obtain insight into challenges in taking active part in their own care. The gained insight could be useful in improving future follow-up interventions after hospitalization.