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Trained facilitators’ experiences with structured advance care planning conversations in oncology: an international focus group study within the ACTION trial

Zwakman, M.; On behalf of the ACTION consortium; Pollock, K.; Bulli, F.; Caswell, G.; Červ, B.; van Delden, J. J. M.; Deliens, L.; van der Heide, A.; Jabbarian, L. J.; Koba-Čeh, H.; Lunder, U.; Miccinesi, G.; Arnfeldt, C. A. Møller; Seymour, J.; Toccafondi, A.; Verkissen, M. N.; Kars, M. C.

Authors

M. Zwakman

On behalf of the ACTION consortium

K. Pollock

F. Bulli

G. Caswell

B. Červ

J. J. M. van Delden

L. Deliens

A. van der Heide

L. J. Jabbarian

H. Koba-Čeh

U. Lunder

G. Miccinesi

C. A. Møller Arnfeldt

J. Seymour

A. Toccafondi

M. N. Verkissen

M. C. Kars



Abstract

Abstract
Background: In oncology, Health Care Professionals often experience conducting Advance Care Planning (ACP)
conversations as difficult and are hesitant to start them. A structured approach could help to overcome this. In the
ACTION trial, a Phase III multi-center cluster-randomized clinical trial in six European countries (Belgium, Denmark,
Italy, the Netherlands, Slovenia, United Kingdom), patients with advanced lung or colorectal cancer are invited to
have one or two structured ACP conversations with a trained facilitator. It is unclear how trained facilitators
experience conducting structured ACP conversations. This study aims to understand how facilitators experience
delivering the ACTION Respecting Choices (RC) ACP conversation.
Methods: A qualitative study involving focus groups with RC facilitators. Focus group interviews were recorded,
transcribed, anonymized, translated into English, and thematically analysed, supported by NVivo 11. The
international research team was involved in data analysis from initial coding and discussion towards final themes.
Results: Seven focus groups were conducted, involving 28 of in total 39 trained facilitators, with different
professional backgrounds from all participating countries. Alongside some cultural differences, six themes were
identified. These reflect that most facilitators welcomed the opportunity to participate in the ACTION trial, seeing it
as a means of learning new skills in an important area. The RC script was seen as supportive to ask questions,
including those perceived as difficult to ask, but was also experienced as a barrier to a spontaneous conversation.
Facilitators noticed that most patients were positive about their ACTION RC ACP conversation, which had prompted
them to become aware of their wishes and to share these with others. The facilitators observed that it took
patients substantial effort to have these conversations. In response, facilitators took responsibility for enabling
patients to experience a conversation from which they could benefit. Facilitators emphasized the need for training,
support and advanced communication skills to be able to work with the script.
Conclusions: Facilitators experienced benefits and challenges in conducting scripted ACP conversations. They
mentioned the importance of being skilled and experienced in carrying out ACP conversations in order to be able
to explore the patients’ preferences while staying attuned to patients’ needs.
Trial registration: International Standard Randomised Controlled Trial Number registry 63110516 (ISRCTN63110516)
per 10/3/2014.
Keywords: Advance care planning, Facilitator, Respecting choices, Experiences, Cancer

Journal Article Type Article
Publication Date 2019-12
Journal BMC Cancer
Publisher Springer Verlag
Peer Reviewed Peer Reviewed
Volume 19
Issue 1
Article Number 1026
APA6 Citation Zwakman, M., On behalf of the ACTION consortium, , Pollock, K., Bulli, F., Caswell, G., Červ, B., …Kars, M. C. (2019). Trained facilitators’ experiences with structured advance care planning conversations in oncology: an international focus group study within the ACTION trial. BMC Cancer, 19(1), https://doi.org/10.1186/s12885-019-6170-7
DOI https://doi.org/10.1186/s12885-019-6170-7
Keywords Genetics; Cancer Research; Oncology
Publisher URL https://bmccancer.biomedcentral.com/articles/10.1186/s12885-019-6170-7
Additional Information Received: 30 November 2018; Accepted: 20 September 2019; First Online: 31 October 2019; : Ethical committee procedures have been followed in all countries and institutions involved, and approval has been provided. The following institutional review boards (IRB’s) were involved:The Netherlands:Medische Ethische Toetsings Commissie (METC) ErasmusMC (NL 50012.078.14);Onderzoeksbureau Diaconessenhuis (ODL2014-14);METC Utrecht (14-560C)Belgium:Universitair Ziekenhuis Brussel Commissie Medische Ethiek;Het ethisch comité A.S.Z.United Kingdom:NHS NRES Committee North West - Liverpool East (14/NW/1189);East Midlands - Derby Research Ethics Committee (16/EM/0055)Italy:Comitato Etico Area Vasta Centro, Regione Toscana (SPE-14.096);Comitato Etico Area Vasta Nord-Ovest (324)Denmark:De Videnskabsetiske Komiteer for Region Hovedstaden;Slovenia:Committee for medical ethics of Republic of SloveniaEthical committee for research at The University Clinic GolnikEthical committee for research at The General Hospital Nova GoricaWritten informed consent was obtained from all participating facilitators.; : Not applicable.; : The authors declare that they have no competing interests.

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