Abstract
BackgroundTo date, the establishment and development of palliative day-care clinics and day hospices in Germany have been completely unsystematic. Research is needed to gain insight into these services and to ensure their accessibility and quality. Accordingly, the ABPATITE research project aims at: (1) identifying the characteristics of palliative day-care clinics and day hospices in Germany, (2) determining demand and preferences for these services, and (3) proposing recommendations (with expert agreement) for the needs-based establishment and development of these services.MethodsThe research is a multi-perspective, prospective, observational study following a mixed-methods approach across three study phases. In phase 1a, qualitative expert interviews will be conducted to capture the facility-related characteristics of palliative day-care clinics and day hospices in Germany; the results will feed into a questionnaire sent to all such institutions identified nationwide. In phase 1b, a questionnaire will be sent to local statutory health insurance providers, to gain insight into their contracts and accounting and remuneration models. In phase 2a, a service preference survey will be conducted with patients and family caregivers. In phase 2b, semi-structured interviews with management staff will explore the factors that promote and hinder the provision of service. In phase 2c, the external perspective will be surveyed via focus groups with local actors involved in hospice and palliative care. In phase 3a, focus groups with representatives from relevant areas will be conducted to develop recommendations. Finally, in phase 3b, recommendations will be agreed upon through a Delphi survey.DiscussionThe empirically developed recommendations should enable the establishment and development of day hospices and palliative day-care clinics in Germany to be better managed, more oriented to actual demand, and more effectively integrated into wider health care services. Importantly, the findings are expected to optimize the overall development of hospice and palliative care services.Trial registration:The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00021446; date of registration: April 20, 2020). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.
Highlights
To date, the establishment and development of palliative day-care clinics and day hospices in Germany have been completely unsystematic
In phase 1a, palliative day-care clinics and day hospices in Germany are being identified through national online databases of hospices and palliative care providers [25, 26] and general Internet searches
In phase 1b, a quantitative, standardized instrument will be developed in cooperation with a local statutory health insurance provider (AOK Lower Saxony) to identify and record all day hospices and palliative day-care clinics that are contracts with the statutory health insurance funds
Summary
The establishment and development of palliative day-care clinics and day hospices in Germany have been completely unsystematic. The Hospice and Palliative Care Act 2015 has placed a greater focus on strengthening and expanding general palliative care in Germany [1] This dynamic law aims at establishing needs-oriented, comprehensive care services in both urban centers and economically weak and rural regions, as well as improving access to all hospice and palliative care services, for immigrants and members of socially disadvantaged groups (e.g. prisoners). This promotion of a needsbased, patient-oriented approach to hospice and palliative care applies to palliative day-care clinics and day hospices [2]. The primary aims of these day-care institutions, in which patients spend up to five days per week, are maintaining patients’ autonomy, improving patients’ quality of life, and supporting family caregivers by granting them “respite care” [3]
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