Open Access Study protocol

End of life care for frail older patients in family practice (ELFOP) – protocol of a longitudinal qualitative study on needs, appropriateness and utilisation of services

Gabriele Müller-Mundt12*, Jutta Bleidorn2, Karin Geiger2, Katharina Klindtworth12, Sabine Pleschberger3, Eva Hummers-Pradier4 and Nils Schneider12

Author Affiliations

1 Institute for Epidemiology, Social Medicine and Health Systems Research, Hannover Medical School, Carl-Neuberg-Straße 1, Hannover 30625, Germany

2 Institute for General Practice, Hannover Medical School (MHH), Carl-Neuberg-Straße 1, Hannover 30625, Germany

3 Institute of Nursing and Care Sciences Research, Department of Nursing Science and Gerontology, The Health and Life Sciences University (UMIT) Vienna, Opernring 5, Vienna, A, 1010, Austria

4 Department of General Practice, University Medical Centre Göttingen (UMG), Humboldtallee 38, Göttingen, D, 37073, Germany

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BMC Family Practice 2013, 14:52  doi:10.1186/1471-2296-14-52

Published: 3 May 2013

Abstract

Background

Frail elderly people represent a major patient group in family practice. Little is known about the patients’ needs, and how their needs evolve over time with increasing frailty towards the end of life. This study will address end-of-life care needs, service utilisation, and experiences of frail elderly patients and their informal caregivers, with regard to family practice. This paper aims to introduce the research protocol.

Methods/Design

The study uses a multiple perspective approach qualitative design. The first study part consists of serial six-monthly in-depth interviews with 30 community-dwelling elderly patients (≥70 years) with moderate to severe frailty and their key informal caregivers, over a period of 18 months. Additionally, semi-structured interviews with the patients’ family physician will be conducted. The serial interviews will be analysed with grounded theory and narrative approaches. Special attention will be paid to the comparison of distinct views of the patients’, informal caregivers’, and family physicians’ as well as on chronological aspects. In the second study part, five focus groups with experts in family medicine, geriatrics, palliative medicine, and nursing will be conducted. Finally, the implications for family practice and health care policy will be discussed in an expert workshop.

Discussion

To our knowledge, this is the first prospective, longitudinal qualitative study on the needs of elderly patients with advanced frailty towards the end of life in German family practice, which integrates the perspectives of patients, informal caregivers, family physicians and other health professionals. The study will contribute to the understanding of the clinical, psychosocial and information needs of patients and their caregivers, and of respective changes of experiences and needs along the illness/frailty trajectory including the last phase of life. It will provide an empirical basis for improving patient-centred care for this increasingly relevant target group.

Keywords:
Frailty; Elderly patients; Informal caregivers; Family medicine; End-of-life care; Palliative care; Longitudinal qualitative study; Multiple perspectives; Needs; Health services research