Skip to main content
Top
Published in: BMC Palliative Care 1/2021

Open Access 01-12-2021 | Care | Study protocol

Exploring the status of and demand for palliative day-care clinics and day hospices in Germany: a protocol for a mixed-methods study

Authors: Franziska A. Herbst, Stephanie Stiel, Kathrin Damm, Lea de Jong, Jona T. Stahmeyer, Nils Schneider

Published in: BMC Palliative Care | Issue 1/2021

Login to get access

Abstract

Background

To 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.

Methods

The 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.

Discussion

The 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.
Literature
1.
go back to reference Bundesministerium der Justiz. Gesetz zur Verbesserung der Hospiz- und Palliativversorgung in Deutschland (Hospiz- und Palliativgesetz – HPG). Bundesgesetzblatt. 2015;48:2114–18. Bundesministerium der Justiz. Gesetz zur Verbesserung der Hospiz- und Palliativversorgung in Deutschland (Hospiz- und Palliativgesetz – HPG). Bundesgesetzblatt. 2015;48:2114–18.
3.
go back to reference Kilonzo I, Lucey M, Twomey F. Implementing Outcome Measures Within an Enhanced Palliative Care Day Care Model. J Pain Symptom Manage. 2015;50(3):419–23.CrossRef Kilonzo I, Lucey M, Twomey F. Implementing Outcome Measures Within an Enhanced Palliative Care Day Care Model. J Pain Symptom Manage. 2015;50(3):419–23.CrossRef
4.
go back to reference GKV-Spitzenverband B, Berlin ABundesverbandeV, Lenzkirch BKinderhospizeV, Freiburg DCaritasverbandeV. Deutscher Hospiz- und PalliativVerband e.V., Berlin, Deutscher Kinderhospizverein e.V., Olpe, Deutscher Paritätischer Wohlfahrtsverband – Gesamtverband e.V., Berlin, Deutsches Rotes Kreuz e.V., Berlin, Diakonie Deutschland – Evangelischer Bundesverband, Evangelisches Werk für Diakonie und Entwicklung e.V., Berlin. Rahmenvereinbarungnach § 39a Abs. 1 Satz 4SGB V über Art und Umfang sowie Sicherung der Qualität der stationären Hospizversorgung vom 13.03.1998, i. d. F. vom 31.03.2017; https://www.gkv-spitzenverband.de/media/dokumente/krankenversicherung_1/hospiz_palliativversorgung/20170331_Rahmenvereinbarung_nach__39a_Abs_1_Satz_4_stationaere_Hospize.pdf. Accessed 22 Jun 2021. GKV-Spitzenverband B, Berlin ABundesverbandeV, Lenzkirch BKinderhospizeV, Freiburg DCaritasverbandeV. Deutscher Hospiz- und PalliativVerband e.V., Berlin, Deutscher Kinderhospizverein e.V., Olpe, Deutscher Paritätischer Wohlfahrtsverband – Gesamtverband e.V., Berlin, Deutsches Rotes Kreuz e.V., Berlin, Diakonie Deutschland – Evangelischer Bundesverband, Evangelisches Werk für Diakonie und Entwicklung e.V., Berlin. Rahmenvereinbarungnach § 39a Abs. 1 Satz 4SGB V über Art und Umfang sowie Sicherung der Qualität der stationären Hospizversorgung vom 13.03.1998, i. d. F. vom 31.03.2017; https://​www.​gkv-spitzenverband.​de/​media/​dokumente/​krankenversicher​ung_​1/​hospiz_​palliativversorg​ung/​20170331_​Rahmenvereinbaru​ng_​nach_​_​39a_​Abs_​1_​Satz_​4_​stationaere_​Hospize.​pdf. Accessed 22 Jun 2021.
5.
go back to reference Radbruch L, Payne S. & the Board of Directors of the EAPC. White Paper on standards and norms for hospice and palliative care in Europe: part 2 – Recommendations from the European Association for Palliative Care. Eur J Palliat Care. 2010;17(1):22–33. Radbruch L, Payne S. & the Board of Directors of the EAPC. White Paper on standards and norms for hospice and palliative care in Europe: part 2 – Recommendations from the European Association for Palliative Care. Eur J Palliat Care. 2010;17(1):22–33.
7.
go back to reference Karmann A, Schneider M, Werblow A, Hofmann U, Wolf D. Fortschreibung der ‘Studie zu Standorten und demographischen Rahmenbedingungen von Hospizangeboten in Sachsen’ (Hospizstudie) –Endfassung. 2013. Karmann A, Schneider M, Werblow A, Hofmann U, Wolf D. Fortschreibung der ‘Studie zu Standorten und demographischen Rahmenbedingungen von Hospizangeboten in Sachsen’ (Hospizstudie) –Endfassung. 2013.
9.
go back to reference Higginson IJ, Gao W, Amesbury B, Normand C. Does a social model of hospice day care affect advanced cancer patients’ use of other health and social services? A prospective quasi-experimental trial. Support Care Cancer. 2010;18(5):627–37.CrossRef Higginson IJ, Gao W, Amesbury B, Normand C. Does a social model of hospice day care affect advanced cancer patients’ use of other health and social services? A prospective quasi-experimental trial. Support Care Cancer. 2010;18(5):627–37.CrossRef
10.
go back to reference Stevens E, Martin CR, White CA. The outcomes of palliative care day services: a systematic review. Palliat Med. 2011;25(2):153–69.CrossRef Stevens E, Martin CR, White CA. The outcomes of palliative care day services: a systematic review. Palliat Med. 2011;25(2):153–69.CrossRef
11.
go back to reference Davies E, Higginson IJ. Systematic review of specialist palliative day-care for adults with cancer. Support Care Cancer. 2005;13(8):607–27.CrossRef Davies E, Higginson IJ. Systematic review of specialist palliative day-care for adults with cancer. Support Care Cancer. 2005;13(8):607–27.CrossRef
12.
go back to reference Goodwin DM, Higginson IJ, Myers K, Douglas H-R, Normand CE. Effectiveness of palliative day care in improving pain, symptom control, and quality of life. J Pain Symptom Manage. 2003;25(3):202–12.CrossRef Goodwin DM, Higginson IJ, Myers K, Douglas H-R, Normand CE. Effectiveness of palliative day care in improving pain, symptom control, and quality of life. J Pain Symptom Manage. 2003;25(3):202–12.CrossRef
23.
go back to reference Stiel S, Stelzer E-M, Schneider N, Herbst FA. Exploring end-of-life interaction in dyads of parents and adult children: A protocol for a mixed-methods study. BMC Palliat Care. 2018;17(1):68.CrossRef Stiel S, Stelzer E-M, Schneider N, Herbst FA. Exploring end-of-life interaction in dyads of parents and adult children: A protocol for a mixed-methods study. BMC Palliat Care. 2018;17(1):68.CrossRef
24.
go back to reference von Elm E, Altman DG, Egger M, Pocock SJ, Gøtzsche PC, Vandenbroucke JP. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: Guidelines for reporting observational studies. Lancet. 2007;370(9596):1453–7.CrossRef von Elm E, Altman DG, Egger M, Pocock SJ, Gøtzsche PC, Vandenbroucke JP. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: Guidelines for reporting observational studies. Lancet. 2007;370(9596):1453–7.CrossRef
27.
go back to reference Lancsar E, Louviere J. Conducting discrete choice experiments to inform healthcare decision making – A user’s guide. Pharmacoeconomics. 2008;26(8):661–7.CrossRef Lancsar E, Louviere J. Conducting discrete choice experiments to inform healthcare decision making – A user’s guide. Pharmacoeconomics. 2008;26(8):661–7.CrossRef
28.
go back to reference Orme B. Getting started with conjoint analysis: Strategies for product design and pricing research. 2nd ed. Madison: Research Publishers LLC; 2010. Orme B. Getting started with conjoint analysis: Strategies for product design and pricing research. 2nd ed. Madison: Research Publishers LLC; 2010.
29.
go back to reference Patrick DL, Burke LB, Gwaltney CJ, Leidy NK, Martin ML, Molsen E, et al. Content validity – Establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: Part 1 – Eliciting concepts for a new PRO instrument. Value Health. 2011;14(8):967–77.CrossRef Patrick DL, Burke LB, Gwaltney CJ, Leidy NK, Martin ML, Molsen E, et al. Content validity – Establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: Part 1 – Eliciting concepts for a new PRO instrument. Value Health. 2011;14(8):967–77.CrossRef
30.
go back to reference Bortz J, Döring N. Forschungsmethoden und Evaluation in den Sozial- und Humanwissenschaften. Heidelberg: Springer; 2009. Bortz J, Döring N. Forschungsmethoden und Evaluation in den Sozial- und Humanwissenschaften. Heidelberg: Springer; 2009.
31.
go back to reference Lamnek S, Krell C. Qualitative Sozialforschung: Lehrbuch. 5th rev. ed. Weinheim: Beltz; 2010. Lamnek S, Krell C. Qualitative Sozialforschung: Lehrbuch. 5th rev. ed. Weinheim: Beltz; 2010.
32.
go back to reference Froggatt K, Hockley J. Action research in palliative care: Defining an evaluation methodology. Palliat Med. 2011;25(8):782–87.CrossRef Froggatt K, Hockley J. Action research in palliative care: Defining an evaluation methodology. Palliat Med. 2011;25(8):782–87.CrossRef
33.
go back to reference Behmann M, Jünger S, Radbruch L, Schneider N. Public health actions to improve palliative care in Germany: Results of a three-round Delphi study. Health Policy. 2012;106(3):303–12.CrossRef Behmann M, Jünger S, Radbruch L, Schneider N. Public health actions to improve palliative care in Germany: Results of a three-round Delphi study. Health Policy. 2012;106(3):303–12.CrossRef
34.
go back to reference Mayring P. Qualitative content analysis: Theoretical foundation, basic procedures and software solution. Klagenfurt; 2014. Mayring P. Qualitative content analysis: Theoretical foundation, basic procedures and software solution. Klagenfurt; 2014.
35.
go back to reference Mayring P [Qualitative content analysis: Demarcation, varieties, developments]. Forum: Qualitative Sozialforschung Social Research. 2019; 20(3):Art 16. Mayring P [Qualitative content analysis: Demarcation, varieties, developments]. Forum: Qualitative Sozialforschung Social Research. 2019; 20(3):Art 16.
36.
go back to reference Reed Johnson F, Lancsar E, Marshall D, Kilambi V, Mühlbacher A, Regier DA, et al. Constructing experimental designs for discrete-choice experiments: Report of the ISPOR Conjoint Analysis Experimental Design Good Research Practices Task Force. Value Health. 2013;16(1):3–13.CrossRef Reed Johnson F, Lancsar E, Marshall D, Kilambi V, Mühlbacher A, Regier DA, et al. Constructing experimental designs for discrete-choice experiments: Report of the ISPOR Conjoint Analysis Experimental Design Good Research Practices Task Force. Value Health. 2013;16(1):3–13.CrossRef
37.
go back to reference Mayring P. Qualitative Inhaltsanalyse. In: Flick U, von Kardoff E, Keupp H, von Rosenstiel L, Wolff S, editors. Handbuch qualitative Forschung: Grundlagen, Konzepte, Methoden und Anwendungen. München: Beltz – Psychologie Verl. Union; 1991. pp. 209–13. Mayring P. Qualitative Inhaltsanalyse. In: Flick U, von Kardoff E, Keupp H, von Rosenstiel L, Wolff S, editors. Handbuch qualitative Forschung: Grundlagen, Konzepte, Methoden und Anwendungen. München: Beltz – Psychologie Verl. Union; 1991. pp. 209–13.
38.
go back to reference American Psychological Association. Ethical principles of psychologists and code of conduct. In: Sharing Research Data for Verification. US; 2010. 8.14. American Psychological Association. Ethical principles of psychologists and code of conduct. In: Sharing Research Data for Verification. US; 2010. 8.14.
Metadata
Title
Exploring the status of and demand for palliative day-care clinics and day hospices in Germany: a protocol for a mixed-methods study
Authors
Franziska A. Herbst
Stephanie Stiel
Kathrin Damm
Lea de Jong
Jona T. Stahmeyer
Nils Schneider
Publication date
01-12-2021
Publisher
BioMed Central
Keyword
Care
Published in
BMC Palliative Care / Issue 1/2021
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-021-00792-5

Other articles of this Issue 1/2021

BMC Palliative Care 1/2021 Go to the issue