How can advance care planning support hope in patients with advanced cancer and their families: A qualitative study as part of the international ACTION trial

Hana Kodba-Ceh; Urska Lunder; ACTION consortium; Francesco Bulli; Glenys Caswell; Johannes J. M. van Delden; Marijke C. Kars; Ida J. Korfage; Guido Miccinesi; Judith A. C. Rietjens; Jane Seymour; Alessandro Toccafondi; Marieke Zwakman; Kristian Pollock

doi:10.1111/ecc.13719

How can advance care planning support hope in patients with advanced cancer and their families: A qualitative study as part of the international ACTION trial

Hana Kodba-Ceh^*, Urska Lunder, ACTION consortium, Francesco Bulli, Glenys Caswell, Johannes J. M. van Delden, Marijke C. Kars, Ida J. Korfage, Guido Miccinesi, Judith A. C. Rietjens, Jane Seymour, Alessandro Toccafondi, Marieke Zwakman, Kristian Pollock

^*Corresponding author for this work

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Abstract

Objective Clinicians' fears of taking away patients' hope is one of the barriers to advance care planning (ACP). Research on how ACP supports hope is scarce. We have taken up the challenge to specify ways in which ACP conversations may potentially support hope. Methods In an international qualitative study, we explored ACP experiences of patients with advanced cancer and their personal representatives (PRs) within the cluster-randomised control ACTION trial. Using deductive analysis of data obtained in interviews following the ACP conversations, this substudy reports on a theme of hope. A latent thematic analysis was performed on segments of text relevant to answer the research question. Results Twenty patients with advanced cancer and 17 PRs from Italy, the Netherlands, Slovenia, and the United Kingdom were participating in post-ACP interviews. Three themes reflecting elements that provide grounds for hope were constructed. ACP potentially supports hope by being (I) a meaningful activity that embraces uncertainties and difficulties; (II) an action towards an aware and empowered position; (III) an act of mutual care anchored in commitments. Conclusion Our findings on various potentially hope supporting elements of ACP conversations provide a constructive way of thinking about hope in relation to ACP that could inform practice.

Original language	English
Article number	e13719
Number of pages	8
Journal	European Journal of Cancer Care
Volume	31
Issue number	6
DOIs	https://doi.org/10.1111/ecc.13719
Publication status	E-pub ahead of print - 27 Sep 2022

Bibliographical note

Funding Information:
This work was supported by the European Union's Seventh Framework Programme FP7/2007‐2013 under grant agreement No 602541. The funding source had no role in study design; in the collection, analysis, and interpretation of data; in the writing of the report; and in the decision to submit the article for publication. Funding Information

Funding Information:
This publication is based on the ACTION project that is funded by the 7th Framework Programme for Research and Technological Development (FP7) under grant agreement No 602541. We are grateful to all participating patients and relatives, facilitators, health care professionals and others who gave support and advice throughout the project.

Publisher Copyright:
© 2022 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.

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Kodba-Ceh, H., Lunder, U., ACTION consortium, Bulli, F., Caswell, G., van Delden, J. J. M., Kars, M. C., Korfage, I. J., Miccinesi, G., Rietjens, J. A. C., Seymour, J., Toccafondi, A., Zwakman, M., & Pollock, K. (2022). How can advance care planning support hope in patients with advanced cancer and their families: A qualitative study as part of the international ACTION trial. European Journal of Cancer Care, 31(6), [e13719]. https://doi.org/10.1111/ecc.13719

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title = "How can advance care planning support hope in patients with advanced cancer and their families: A qualitative study as part of the international ACTION trial",

abstract = "Objective Clinicians' fears of taking away patients' hope is one of the barriers to advance care planning (ACP). Research on how ACP supports hope is scarce. We have taken up the challenge to specify ways in which ACP conversations may potentially support hope. Methods In an international qualitative study, we explored ACP experiences of patients with advanced cancer and their personal representatives (PRs) within the cluster-randomised control ACTION trial. Using deductive analysis of data obtained in interviews following the ACP conversations, this substudy reports on a theme of hope. A latent thematic analysis was performed on segments of text relevant to answer the research question. Results Twenty patients with advanced cancer and 17 PRs from Italy, the Netherlands, Slovenia, and the United Kingdom were participating in post-ACP interviews. Three themes reflecting elements that provide grounds for hope were constructed. ACP potentially supports hope by being (I) a meaningful activity that embraces uncertainties and difficulties; (II) an action towards an aware and empowered position; (III) an act of mutual care anchored in commitments. Conclusion Our findings on various potentially hope supporting elements of ACP conversations provide a constructive way of thinking about hope in relation to ACP that could inform practice.",

author = "Hana Kodba-Ceh and Urska Lunder and {ACTION consortium} and Francesco Bulli and Glenys Caswell and {van Delden}, {Johannes J. M.} and Kars, {Marijke C.} and Korfage, {Ida J.} and Guido Miccinesi and Rietjens, {Judith A. C.} and Jane Seymour and Alessandro Toccafondi and Marieke Zwakman and Kristian Pollock",

note = "Funding Information: This work was supported by the European Union's Seventh Framework Programme FP7/2007‐2013 under grant agreement No 602541. The funding source had no role in study design; in the collection, analysis, and interpretation of data; in the writing of the report; and in the decision to submit the article for publication. Funding Information Funding Information: This publication is based on the ACTION project that is funded by the 7th Framework Programme for Research and Technological Development (FP7) under grant agreement No 602541. We are grateful to all participating patients and relatives, facilitators, health care professionals and others who gave support and advice throughout the project. Publisher Copyright: {\textcopyright} 2022 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.",

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Kodba-Ceh, H, Lunder, U, ACTION consortium, Bulli, F, Caswell, G, van Delden, JJM, Kars, MC, Korfage, IJ, Miccinesi, G, Rietjens, JAC, Seymour, J, Toccafondi, A, Zwakman, M & Pollock, K 2022, 'How can advance care planning support hope in patients with advanced cancer and their families: A qualitative study as part of the international ACTION trial', European Journal of Cancer Care, vol. 31, no. 6, e13719. https://doi.org/10.1111/ecc.13719

How can advance care planning support hope in patients with advanced cancer and their families : A qualitative study as part of the international ACTION trial. / Kodba-Ceh, Hana; Lunder, Urska; ACTION consortium et al.

In: European Journal of Cancer Care, Vol. 31, No. 6, e13719, 27.09.2022.

Research output: Contribution to journal › Article › Academic › peer-review

TY - JOUR

T1 - How can advance care planning support hope in patients with advanced cancer and their families

T2 - A qualitative study as part of the international ACTION trial

AU - Kodba-Ceh, Hana

AU - Lunder, Urska

AU - ACTION consortium

AU - Bulli, Francesco

AU - Caswell, Glenys

AU - van Delden, Johannes J. M.

AU - Kars, Marijke C.

AU - Korfage, Ida J.

AU - Miccinesi, Guido

AU - Rietjens, Judith A. C.

AU - Seymour, Jane

AU - Toccafondi, Alessandro

AU - Zwakman, Marieke

AU - Pollock, Kristian

N1 - Funding Information: This work was supported by the European Union's Seventh Framework Programme FP7/2007‐2013 under grant agreement No 602541. The funding source had no role in study design; in the collection, analysis, and interpretation of data; in the writing of the report; and in the decision to submit the article for publication. Funding Information Funding Information: This publication is based on the ACTION project that is funded by the 7th Framework Programme for Research and Technological Development (FP7) under grant agreement No 602541. We are grateful to all participating patients and relatives, facilitators, health care professionals and others who gave support and advice throughout the project. Publisher Copyright: © 2022 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.

PY - 2022/9/27

Y1 - 2022/9/27

N2 - Objective Clinicians' fears of taking away patients' hope is one of the barriers to advance care planning (ACP). Research on how ACP supports hope is scarce. We have taken up the challenge to specify ways in which ACP conversations may potentially support hope. Methods In an international qualitative study, we explored ACP experiences of patients with advanced cancer and their personal representatives (PRs) within the cluster-randomised control ACTION trial. Using deductive analysis of data obtained in interviews following the ACP conversations, this substudy reports on a theme of hope. A latent thematic analysis was performed on segments of text relevant to answer the research question. Results Twenty patients with advanced cancer and 17 PRs from Italy, the Netherlands, Slovenia, and the United Kingdom were participating in post-ACP interviews. Three themes reflecting elements that provide grounds for hope were constructed. ACP potentially supports hope by being (I) a meaningful activity that embraces uncertainties and difficulties; (II) an action towards an aware and empowered position; (III) an act of mutual care anchored in commitments. Conclusion Our findings on various potentially hope supporting elements of ACP conversations provide a constructive way of thinking about hope in relation to ACP that could inform practice.

AB - Objective Clinicians' fears of taking away patients' hope is one of the barriers to advance care planning (ACP). Research on how ACP supports hope is scarce. We have taken up the challenge to specify ways in which ACP conversations may potentially support hope. Methods In an international qualitative study, we explored ACP experiences of patients with advanced cancer and their personal representatives (PRs) within the cluster-randomised control ACTION trial. Using deductive analysis of data obtained in interviews following the ACP conversations, this substudy reports on a theme of hope. A latent thematic analysis was performed on segments of text relevant to answer the research question. Results Twenty patients with advanced cancer and 17 PRs from Italy, the Netherlands, Slovenia, and the United Kingdom were participating in post-ACP interviews. Three themes reflecting elements that provide grounds for hope were constructed. ACP potentially supports hope by being (I) a meaningful activity that embraces uncertainties and difficulties; (II) an action towards an aware and empowered position; (III) an act of mutual care anchored in commitments. Conclusion Our findings on various potentially hope supporting elements of ACP conversations provide a constructive way of thinking about hope in relation to ACP that could inform practice.

U2 - 10.1111/ecc.13719

DO - 10.1111/ecc.13719

M3 - Article

VL - 31

JO - European Journal of Cancer Care

JF - European Journal of Cancer Care

SN - 0961-5423

IS - 6

M1 - e13719

ER -

How can advance care planning support hope in patients with advanced cancer and their families: A qualitative study as part of the international ACTION trial

Abstract

Bibliographical note

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