Perceived acceptability of a prototype toolkit to support patients and informal caregivers to express their perspectives in palliative care conversations

Background: Patients and informal caregivers experience challenges to express their personal perspectives in conversations with healthcare professionals (HCPs). A prototype toolkit, which consists of a hardcopy version and a website, was developed to address their challenges. The aim of this study i...

Full description

Saved in:
Bibliographic Details
Main Authors: Annet Olde Wolsink-van Harlingen, Jan Jukema, Kris Vissers, Madeleen Uitdehaag, Jeroen Hasselaar, Leontine Groen-van de Ven
Format: Article
Language:English
Published: Elsevier 2025-06-01
Series:PEC Innovation
Subjects:
Online Access:http://www.sciencedirect.com/science/article/pii/S2772628225000160
Tags: Add Tag
No Tags, Be the first to tag this record!
_version_ 1850178809982091264
author Annet Olde Wolsink-van Harlingen
Jan Jukema
Kris Vissers
Madeleen Uitdehaag
Jeroen Hasselaar
Leontine Groen-van de Ven
author_facet Annet Olde Wolsink-van Harlingen
Jan Jukema
Kris Vissers
Madeleen Uitdehaag
Jeroen Hasselaar
Leontine Groen-van de Ven
author_sort Annet Olde Wolsink-van Harlingen
collection DOAJ
description Background: Patients and informal caregivers experience challenges to express their personal perspectives in conversations with healthcare professionals (HCPs). A prototype toolkit, which consists of a hardcopy version and a website, was developed to address their challenges. The aim of this study is to gain insight into the perceived acceptability of this prototype toolkit. Method: Patients and informal caregivers end users and HCPs participated in semi-structured individual or group interviews. This resulted in two databases of qualitative data which were thematically analysed. Results: Twenty-two end users and twelve HCPs participated in this study. There is appreciation for the content and use of the prototype toolkit, with the hardcopy version of the toolkit being valued more than the website. Moreover, the use of the toolkit may strengthen end users' power and control and may support HCPs in tailoring communication and care. End users and HCPs recommendations for implementation are to further develop the prototype toolkit, provide HCPs with information, instruction and support and create facilitating conditions in healthcare. Conclusion: High appreciation of the hardcopy version and the practical value are positive indicators of end users'and HCPS perceived acceptability of the prototype toolkit. However, the content of the toolkit is experienced as being too extensive, with the hardcopy version experienced as being incomplete without the website and the website is experienced as being too complicated to use. Further development and testing of the prototype toolkit is required to increase its acceptability by end users and HCPs. Innovation: In this study a Design Thinking approach was used to test study the acceptability of a prototype toolkit by endusers and HCPs. This approach can contribute to a succesfull implementation of the toolkit and its effectiveness.
format Article
id doaj-art-97a4b6df8671478cba5da4b2042e0204
institution OA Journals
issn 2772-6282
language English
publishDate 2025-06-01
publisher Elsevier
record_format Article
series PEC Innovation
spelling doaj-art-97a4b6df8671478cba5da4b2042e02042025-08-20T02:18:38ZengElsevierPEC Innovation2772-62822025-06-01610038710.1016/j.pecinn.2025.100387Perceived acceptability of a prototype toolkit to support patients and informal caregivers to express their perspectives in palliative care conversationsAnnet Olde Wolsink-van Harlingen0Jan Jukema1Kris Vissers2Madeleen Uitdehaag3Jeroen Hasselaar4Leontine Groen-van de Ven5Saxion University of Applied Sciences, Research Group Smart Health, Deventer/Enschede, Netherlands; Radboudumc University Medical Centre, Department of Anaesthesiology, Pain and Palliative Medicine Nijmegen, Netherlands; Corresponding author at: Saxion University of Applied Sciences, Research Group Smart Health, PO BOX 70.000; 7500 KB Enschede, Netherlands.Dimence Mental Health Group, Deventer, Netherlands; Saxion University of Applied Sciences, Saxion Research and Graduate School, Deventer/Enschede, NetherlandsRadboudumc University Medical Centre, Department of Anaesthesiology, Pain and Palliative Medicine Nijmegen, NetherlandsRadboudumc University Medical Centre, Department of Anaesthesiology, Pain and Palliative Medicine Nijmegen, NetherlandsRadboud University Medical Centre, Department of Primary Care, Nijmegen, Netherlands; Nivel Netherlands Institute for Health Services Research, Utrecht, NetherlandsWindesheim University of Applied Sciences, Research Group Living Well With Dementia, Zwolle, NetherlandsBackground: Patients and informal caregivers experience challenges to express their personal perspectives in conversations with healthcare professionals (HCPs). A prototype toolkit, which consists of a hardcopy version and a website, was developed to address their challenges. The aim of this study is to gain insight into the perceived acceptability of this prototype toolkit. Method: Patients and informal caregivers end users and HCPs participated in semi-structured individual or group interviews. This resulted in two databases of qualitative data which were thematically analysed. Results: Twenty-two end users and twelve HCPs participated in this study. There is appreciation for the content and use of the prototype toolkit, with the hardcopy version of the toolkit being valued more than the website. Moreover, the use of the toolkit may strengthen end users' power and control and may support HCPs in tailoring communication and care. End users and HCPs recommendations for implementation are to further develop the prototype toolkit, provide HCPs with information, instruction and support and create facilitating conditions in healthcare. Conclusion: High appreciation of the hardcopy version and the practical value are positive indicators of end users'and HCPS perceived acceptability of the prototype toolkit. However, the content of the toolkit is experienced as being too extensive, with the hardcopy version experienced as being incomplete without the website and the website is experienced as being too complicated to use. Further development and testing of the prototype toolkit is required to increase its acceptability by end users and HCPs. Innovation: In this study a Design Thinking approach was used to test study the acceptability of a prototype toolkit by endusers and HCPs. This approach can contribute to a succesfull implementation of the toolkit and its effectiveness.http://www.sciencedirect.com/science/article/pii/S2772628225000160Chronic obstructive pulmonary diseaseChronic heart failurePalliative carePatient perspectiveDesign thinkingAcceptability
spellingShingle Annet Olde Wolsink-van Harlingen
Jan Jukema
Kris Vissers
Madeleen Uitdehaag
Jeroen Hasselaar
Leontine Groen-van de Ven
Perceived acceptability of a prototype toolkit to support patients and informal caregivers to express their perspectives in palliative care conversations
PEC Innovation
Chronic obstructive pulmonary disease
Chronic heart failure
Palliative care
Patient perspective
Design thinking
Acceptability
title Perceived acceptability of a prototype toolkit to support patients and informal caregivers to express their perspectives in palliative care conversations
title_full Perceived acceptability of a prototype toolkit to support patients and informal caregivers to express their perspectives in palliative care conversations
title_fullStr Perceived acceptability of a prototype toolkit to support patients and informal caregivers to express their perspectives in palliative care conversations
title_full_unstemmed Perceived acceptability of a prototype toolkit to support patients and informal caregivers to express their perspectives in palliative care conversations
title_short Perceived acceptability of a prototype toolkit to support patients and informal caregivers to express their perspectives in palliative care conversations
title_sort perceived acceptability of a prototype toolkit to support patients and informal caregivers to express their perspectives in palliative care conversations
topic Chronic obstructive pulmonary disease
Chronic heart failure
Palliative care
Patient perspective
Design thinking
Acceptability
url http://www.sciencedirect.com/science/article/pii/S2772628225000160
work_keys_str_mv AT annetoldewolsinkvanharlingen perceivedacceptabilityofaprototypetoolkittosupportpatientsandinformalcaregiverstoexpresstheirperspectivesinpalliativecareconversations
AT janjukema perceivedacceptabilityofaprototypetoolkittosupportpatientsandinformalcaregiverstoexpresstheirperspectivesinpalliativecareconversations
AT krisvissers perceivedacceptabilityofaprototypetoolkittosupportpatientsandinformalcaregiverstoexpresstheirperspectivesinpalliativecareconversations
AT madeleenuitdehaag perceivedacceptabilityofaprototypetoolkittosupportpatientsandinformalcaregiverstoexpresstheirperspectivesinpalliativecareconversations
AT jeroenhasselaar perceivedacceptabilityofaprototypetoolkittosupportpatientsandinformalcaregiverstoexpresstheirperspectivesinpalliativecareconversations
AT leontinegroenvandeven perceivedacceptabilityofaprototypetoolkittosupportpatientsandinformalcaregiverstoexpresstheirperspectivesinpalliativecareconversations