姑息治疗与医学

抽象的

Understanding the Needs and Perspectives of Patients with Incurable Pulmonary Disease at the End of Life and their Relatives: Protocol of a Qualitative Longitudinal Study

Gabriella Marx, Henrikje Stanze, Friedemann Nauck and Nils Schneider

Background: Although patients with COPD sometimes have lesser physical, social, and emotional functioning than those with lung cancer, they rarely receive specialised palliative care support at the end of life. To date, specialised palliative care is not common for patients with non-malignant disease but should be adapted according to the patients’ special health-care-related needs with regard to specific illness trajectories. This longitudinal study aims to get a deep insight into the needs and perspectives of patients suffering from progressive lung diseases, i.e. lung cancer and COPD, over a period of time.

Methods: The design of this study is divided into three phases: (1) Qualitative prospective longitudinal study conducting four semi-structured repetitive interviews with a total of 40 patients over a period of 12 month. Data will be analysed content related as well as interpretative using Grounded Theory (2) Four group discussions with bereaved people whose relatives died from COPD or lung cancer. Data will be analysed using documentary method. (3) A oneday multidisciplinary workshop with representatives of different health related fields to derive implications for daily practice.

Discussion: By integrating different diseases, the study contributes to shift the focus of palliative care to patients with non-oncologic diseases. As this is the first German study on this issue, results will enrich the current international discussion with a German perspective.