Research is the only way to continuously improve the provision of care for patients and their loved ones.
This naturally also applies to patients with advanced and progressive diseases. Therefore, research has to be an integral part of palliative care. Next to clinical care and education, it is a pillar of our identity as an academic institution at the Department of Palliative Medicine.
In the special situation of palliative care patients, research must of course be carried out very carefully and ethically justifiably, with the utmost respect for patients and their loved ones.
The challenges in palliative care research are not only to address the vulnerability of the patient group. Especially in research at the end of life it is often not possible to interview the patients themselves or to contact them several times over a longer period of time. For this reason, loved ones or the clinical personnel are then asked for an assessment. Particular consideration is given to the current situation of the loved ones when they are involved in accompanying and caring for the patient or when the assessment takes place after the death of the patient.
As in palliative care itself, research in this field revolves around patients and their loved ones and, therefore, has to be interdisciplinary and multi-professional. In addition to medical doctors, researchers at the department include psychologists, social education workers and health scientists.
Research in palliative care relies on cooperation due to the special situation of the patients and the resulting methodological challenges. The Department of Palliative Medicine has taken on this task and successfully established several internal and external, partly inter-faculty, collaborations and research networks.
The research priorities that have developed in recent years can be grouped into three thematic Areas:
- education research
During the past years, first instruments for the evaluation of contents of the comprehensive approach of palliative care have been developed internationally. The Anglo-American version of the QoDD assesses family caregivers’ and professionals’ experiences from the dying phase and circumstances of death. In collaboration with the University Hospital Mainz the QoDD questionnaire was translated into German and validated in terms of its psychometric properties. For this purpose, family caregivers of patients who died on the palliative care wards in Erlangen and Mainz and health professionals were interviewed in a personal interview on the basis of the QoDD. The questionnaire is now ready for standard use in clinical practice and end-of-life care research.
Scientific Staff Erlangen: Dr. phil. Maria Heckel, Prof. Dr. med. Christoph Ostgathe;
Scientific Staff: Mainz: Sonja Bussmann, Prof. Dr. med. Martin Weber
QoDD-D-Ang Qualitiy of Dying and Death Questionnaire in der Version für Angehörige (Deutsch)
Manual zu QoDD-D-Ang
QoDD-D-MA Qualitiy of Dying and Death Questionnaire in der Version für Mitarbeiter (Deutsch)
Manual zu QoDD-D-MA
Contact: Dr. Maria Heckel, E-Mail: email@example.com
The study was funded by the German Cancer Aid (Deutsche Krebshilfe e.V.). Förderkennzeichen 110026/110027 (Projektlaufzeit: 15.06.12-30.11.2014)
Heckel M, Bussmann S, Stiel S, Ostgathe C, Weber M. Validation of the German Version of the Quality of Dying and Death Questionnaire for Health Professionals. The American journal of hospice & palliative care. 2016;33(8):760-9.
Stiel S, Heckel M, Bussmann S, Weber M, Ostgathe C. End-of-life care research with bereaved informal caregivers--analysis of recruitment strategy and participation rate from a multi-centre validation study. BMC palliative care. 2015;14:21.
Heckel M, Bussmann S, Stiel S, Weber M, Ostgathe C. Validation of the German Version of the Quality of Dying and Death Questionnaire for Informal Caregivers (QODD-D-Ang). J Pain Symptom Manage. 2015;50(3):402-13.