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BMC Palliative Care
Published in: BMC Palliative Care 1/2018

Open Access 01-12-2018 | Study protocol

Primary palliative Care in General Practice – study protocol of a three-stage mixed-methods organizational health services research study

Authors: Helen Ewertowski, Fabian Tetzlaff, Stephanie Stiel, Nils Schneider, Saskia Jünger

Published in: BMC Palliative Care | Issue 1/2018

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Abstract

Background

The focus of this project is on improving the provision of primary palliative care (PC) by general practitioners (GPs). While approximately 10–15% of the incurable, seriously ill or dying people will be in need of specialist PC, the vast majority can be adequately treated within generalist care. The strengthening of the GP’s role in PC, as well as ensuring close collaboration between specialist PC services and GPs have been identified as top priorities for the improvement of PC in Germany. Despite healthcare policy actions, diverse obstacles still exist to successful implementation of primary PC on a structural, process, and economic level. Therefore, this project aims at addressing barriers and facilitators to primary PC delivery in general practice in Germany.

Methods

The study follows a three-step approach; first, it aims at systematically analyzing barriers and facilitators to primary PC provision by GPs. Second, based on these outcomes, a tailored intervention package will be developed to enhance the provision of primary PC by GPs. Third, the intervention package will be implemented and evaluated in practice. The expected outcome will be an evidence-based model for successful implementation of primary PC delivery tailored to the German healthcare system, followed by a strategic action plan on how to improve current practice both on a local level and nationally.

Discussion

The first step of the project has been partly completed at the time of writing. The chosen methodologies of four sub-projects within this first step have opened up different advantages and disadvantages for the data collection. In sum of all sub-projects, the different methodologies and target groups contributed valuable information to the systematic analysis of barriers and facilitators to primary PC provision by GPs.

Trial registration

The study (BMBF-FK 01 GY 1610) was retrospectively registered at the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00011821; date of registration: December 04th 2017) and at the German Register of health care research (Versorgungsforschung Deutschland - Datenbank) (Registration N° VfD_​ALLPRAX_​16_​003817; date of registration: March 30th 2017).
Literature
1.
Sepulveda C, Marlin A, Yoshida T, Ullrich A. Palliative Care: the World Health Organization's global perspective. J Pain Symptom Manag. 2002;24(2):91–6.CrossRef
2.
Gott M, Seymour J, Ingleton C, Gardiner C, Bellamy G. 'That's part of everybody's job': the perspectives of health care staff in England and New Zealand on the meaning and remit of palliative care. Palliat Med. 2012;26(3):232–41.CrossRefPubMed
3.
4.
Malpas PJ, Mitchell K. "doctors Shouldn't underestimate the power that they have": NZ doctors on the Care of the Dying Patient. Am J Hosp Palliat Care. 2017;34(4):301–7.CrossRefPubMed
5.
Kratel U. Fortschritte in der ambulanten Palliative Care-Versorgung in Deutschland - Eine Bestandsaufnahme. Dtsch Z Onkol. 2014;46(01):8–15.CrossRef
6.
Gagyor I, Luthke A, Jansky M, Chenot JF. End Of life care in general practice: results of an observational survey with general practitioners. Schmerz. 2013;27(3):289–95.CrossRefPubMed
7.
8.
De Lima L, Bennett MI, Murray SA, Hudson P, Doyle D, Bruera E, et al. International Association for Hospice and Palliative Care (IAHPC) list of essential practices in palliative care. J Pain Palliat Care Pharmacother. 2012;26(2):118–22.CrossRefPubMed
9.
Radbruch L, Payne S. White Paper on standards and norms for hospice and palliative care in Europe: part 1. Eur J Palliat Care. 2009;16(6):278–89.
10.
Quill TE, Abernethy AP. Generalist plus specialist palliative care--creating a more sustainable model. New Engl J Med. 2013;368(13):1173–5.CrossRefPubMed
11.
Thomas K, Free A. The gold standards framework is pivotal to palliative care. Guidel Pract. 2006;9:29–39.
12.
Shaw KL, Clifford C, Thomas K, Meehan H. Review: improving end-of-life care: a critical review of the gold standards framework in primary care. Palliat Med. 2010;24(3):317–29.CrossRefPubMed
13.
Murray SA, Firth A, Schneider N, Van den Eynden B, Gomez-Batiste X, Brogaard T, et al. Promoting palliative care in the community: production of the primary palliative care toolkit by the European Association of Palliative Care Taskforce in primary palliative care. Palliat Med. 2015;29(2):101–11.CrossRefPubMed
14.
Afshar K, Geiger K, Müller-Mundt G, Bleidorn J, Schneider N. Hausärztliche Palliativversorgung bei nichtonkologischen Patienten. Schmerz. 2015;29(6):604–15.CrossRefPubMed
15.
Mitchell GK, Reymond EJ, BP MG. Palliative care: promoting general practice participation. Med J Aust. 2004;180(5):207–8.PubMed
16.
17.
Deutsche Gesellschaft für Palliativmedizin e. V. Deutscher Hospiz- und PalliativVerband e. V., Bundesärztekammer. Charta zur Betreuung schwerstkranker und sterbender Menschen in Deutschland. 2016.
18.
Behmann M, Junger 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.CrossRefPubMed
19.
Bundesministerium für Gesundheit. Gesetz zur Verbesserung der Hospiz- und Palliativversorgung in Deutschland (Hospiz- und Palliativgesetz – HPG) vom 1. Dezember 2015. Bundesgesetzesblatt2015. p. 2114–9.
20.
Schneider N. Rubrik Wissen: Das Hospiz- und Palliativgesetz. Bedeutung für die hausärztliche Praxis. Pflegen: palliativ. 2016;29:36–7.
21.
Burt J, Shipman C, Addington-Hall J, White P. Nursing the dying within a generalist caseload: a focus group study of district nurses. Int J Nurs Stud. 2008;45(10):1470–8.CrossRefPubMed
22.
23.
Koch K, Miksch A, Schurmann C, Joos S, Sawicki PT. The German health care system in international comparison: the primary care physicians' perspective. Dtsch Arztebl Int. 2011;108(15):255–61.PubMedPubMedCentral
24.
Dahlhaus A, Vanneman N, Siebenhofer A, Brosche M, Guethlin C. Involvement of general practitioners in palliative cancer care: a qualitative study. Support Care Cancer. 2013;21(12):3293–300.CrossRefPubMed
25.
Hermann K, Engeser P, Szecsenyi J, Miksch A. Palliative patients cared for at home by PAMINO-trained and other GPs - health-related quality of life as measured by QLQ-C15-PAL and POS. BMC Palliat Care. 2012;11:13.CrossRefPubMedPubMedCentral
26.
Campbell M, Fitzpatrick R, Haines A, Kinmonth AL, Sandercock P, Spiegelhalter D, et al. Framework for design and evaluation of complex interventions to improve health. BMJ (Clin Res ed). 2000;321(7262):694–6.CrossRef
27.
Pfaff H, Albert US, Bornemann R, Ernstmann N, Gostomzyk J, Gottwik MG, et al. methods for organisational health services research. Gesundheitswesen. 2009;71(11):777–90.CrossRefPubMed
28.
Willis GB. Cognitive interviewing: a “how to” guide. In: Caspar RA, Lessler JT, Willis GB, editors. Reducing survey error through research on the cognitive and decision processes in surveys. Meeting of the American Statistical Association. Research Triangle Institute: North Carolina, United States; 1999.
29.
Emerson RM, Fretz RI, Shaw LL, editors. Writing ethnographic fieldnotes. 1st ed. Chicago: University of Chicago Press; 1995.
30.
Huschka D, Knoblauch H, Oellers C, Solga H, editors. Forschungsinfrastrukturen für die qualitative Sozialforschung. 1st ed. Berlin: Scivero; 2013.
31.
Kemppainen JK. The critical incident technique and nursing care quality research. J Adv Nurs. 2000;32(5):1264–71.CrossRefPubMed
32.
Mallak LA, Lyth DM, Olson SD, Ulshafer SM, Sardone FJ. Diagnosing culture in health-care organizations using critical incidents. Int Journal Health Care Qual Assur. 2003;16(4):180–90.CrossRef
33.
Froggatt K, Hockley J. Action research in palliative care: defining an evaluation methodology. Palliat Med. 2011;25(8):782–7.CrossRefPubMed
34.
Mason B, Epiphaniou E, Nanton V, Donaldson A, Shipman C, Daveson BA, et al. Coordination of care for individuals with advanced progressive conditions: a multi-site ethnographic and serial interview study. Br J Gen Pract. 2013;63(613):e580–8.CrossRefPubMedPubMedCentral
35.
Mason B, Donaldson A, Epiphaniou E, Nanton V, Shipman C, Daveson B, et al. Coordination of care for people at risk of dying in the next 12 months: a multi-site prospective study and consensus seeking exercise. London: National Institute for Health Research Service Delivery and Organisation Programme. 2013:1–194.
36.
Daveson BA, de Wolf-Linder S, Witt J, Newson K, Morris C, Higginson IJ, et al. Results of a transparent expert consultation on patient and public involvement in palliative care research. Palliat Med. 2015;29(10):939–49.CrossRefPubMedPubMedCentral
37.
38.
Bausewein C, Fegg M, Radbruch L, Nauck F, von Mackensen S, Borasio GD, et al. Validation and clinical application of the german version of the palliative care outcome scale. J Pain Symptom Manag. 2005;30(1):51–62.CrossRef
39.
Fusch PI, Ness LR. Are We There yet? Data saturation in qualitative research. Qual Rep. 2015;20(9):1408–16.
40.
Palinkas LA, Horwitz SM, Green CA, Wisdom JP, Duan N, Hoagwood K. Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Admin Pol Ment Health. 2015;42(5):533–44.CrossRef
41.
Corbin J, Strauss A. Basics of qualitative research: techniques and procedures for developing grounded theory: Sage Publications; 2015.
42.
Swart E, Gothe H, Geyer S, Jaunzeme J, Maier B, Grobe TG, et al. Gute Praxis Sekundärdatenanalyse (GPS): Leitlinien und Empfehlungen. Gesundheitswesen. 2015;77(02):120–6.CrossRefPubMed
43.
Backhaus K, Erichson B, Plinke W, Weiber R. Multivariate Analysemethoden: eine anwendungsorientierte Einführung. 14th ed. Springer Gabler: Springer-Verlag Berlin Heidelberg; 2015.
44.
Bühl A. SPSS 18 (ehemals PASW): Einführung in die moderne Datenanalyse: Tata McGraw-Hill. Education. 2010;
45.
von Unger H. Partizipative Forschung: Einführung in die Forschungspraxis. Springer VS: Wiesbaden; 2014.CrossRef
46.
Gallagher M, Hares T, Spencer J, Bradshaw C, Webb I. The nominal group technique: a research tool for general practice? Fam Pract. 1993;10(1):76–81.CrossRefPubMed
47.
Häder M. Delphi-Befragungen: Ein Arbeitsbuch. 3rd ed. Springer VS: Wiesbaden; 2014.CrossRef
48.
Farquhar MC, Ewing G, Booth S. Using mixed methods to develop and evaluate complex interventions in palliative care research. Palliat Med. 2011;25(8):748–57.CrossRefPubMed
49.
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 Manag. 2015;50(3):402–13.CrossRef
50.
Finch TL, Mair FS, O'Donnell C, Murray E, May CR. From theory to 'measurement' in complex interventions: methodological lessons from the development of an e-health normalisation instrument. BMC Med Res Methodol. 2012;12:69.CrossRefPubMedPubMedCentral
51.
Gysels MH, Evans C, Higginson IJ. Patient, caregiver, health professional and researcher views and experiences of participating in research at the end of life: a critical interpretive synthesis of the literature. BMC Med Res Methodol. 2012;12:123.CrossRefPubMedPubMedCentral
52.
PR CMA, de Vries K. Can qualitative interviews have benefits for participants in end-of-life care research? Eur J Palliat Care. 2016;23(5):227–31.
53.
Li J. Ethical Challenges in participant observation: a reflection on ethnographic fieldwork. Qual Rep. 2008;13(1):100–15.
54.
Brazil K. Issues of diversity: participatory action research with indigenous peoples. In: Hockley J, Froggatt K, Heimerl K, editors. Participatory research in palliative care: actions and reflections. United Kingdom: Oxford University Press; 2013.
55.
56.
Metadata
Title
Primary palliative Care in General Practice – study protocol of a three-stage mixed-methods organizational health services research study
Authors
Helen Ewertowski
Fabian Tetzlaff
Stephanie Stiel
Nils Schneider
Saskia Jünger
Publication date
01-12-2018
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2018
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-018-0276-6

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