Short summary

The study examines how patients with severe chronic obstructive pulmonary disease (COPD) and close family members within a year manage to participate in their own care during and after hospitalization for exacerbation of COPD. It is designed as an ethnographic inspired fieldwork using the COPD assessment test (CAT), participant observations and interviews as methods. Results of the study may influence on a rethinking of self-management programs tailored to individual patient-family needs and preferences.

Rationale

Background:

User involvement of patients with chronic obstructive pulmonary disease (COPD) in healthcare is the focus in this study. Typically, living with severe COPD is characterized of recurrent exacerbations and need for hospitalization. Repeated transitions from hospital to home seem to challenge COPD-patients in taking part in their own care. Close family members may be affected and burdened as well. Different health care programs that focus on self-management of the disease and its consequences are worldwide established to support patients in participating in their own care. However, evidence of the effectiveness of previous self-management programs for COPD-patients is indecisive. Furthermore, focus on the family rarely occurs. Researchers in the field therefore recommend a reconceptualization of COPD-self-management programs with attention to a family-centered, holistic and relational care.

Aim:

The aim is to develop knowledge of COPD-patients' and their family members' perceptions of possibilities and challenges in participating in care characterized of transitions between hospital and home.

Description of the cohort

The study is explorative and longitudinal. It will be carried out as a fieldwork among patients with COPD and family members during and after hospitalization at a Regional Hospital in Denmark. Patients admitted to the hospital due to severe exacerbation of COPD and one of their close family members will be consecutively included.

Data and biological material

Experiences of participation during hospitalization are investigated by participant observation. Experiences of transitions and life at home are investigated by individual interviews of each person 6 and 12 months after discharge. The study is supplied with screenings of health related quality of life (HR-Qol) using the COPD Assessment Test (CAT). A phenomenological hermeneutical approach inspired by the French philosopher Ricoeurs' theory of interpretation will be used to guide the data analysis.

Collaborating researchers and departments

OPEN Odense Patient data Explorative Network, Odense University Hospital

• Professor and Main-Supervisor Lise Hounsgaard, MSc, PhD

Department of Gastroenterological Surgery, Roskilde and Koege Hospital

• Post doc. and Co-Supervisor Thora Grothe Thomsen, PhD, MEd, RN

Center for Development and Cooperation in Health Practice, The Department of Research, UC-Lillebælt

• Head of Research and Co-Supervisor Poul Bruun, PhD, MPH, RN

Department of Respiratory Medicine, Næstved Hospital

• Consultant and Co-Supervisor Uffe Bødtger, MD, PhD