Experiences and needs of patients facing incurable cancer and their relatives with informal care in psychosocial supporting centres in the Netherlands: A qualitative study

Sep 28, 2026

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Purpose, methods, results, and conclusion describe a qualitative study of IPSO psychosocial supporting centres in the Netherlands. Semi-structured interviews with patients and relatives confronting incurable cancer were analyzed thematically, yielding eight themes and two subthemes. Participants reported needs for understanding, information exchange, and day-filling activities, valuing the non-obligatory approach and peer storytelling. Mixed peer groups were often uncomfortable; separate end-of-life-capable groups improved connection, though some found access limited. Uncertainty from illness also hindered planning and affected attendance.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages13

Reading Time33 min

AccessFree to download

Abstract

Purpose

Method

Results

Conclusion

Introduction

Background and rising cancer burden

Need for palliative care and timely integration

OPEN ACCESS Citation: Siemelink SD, van Koeveringe J, Bussmann M, van Veen S, Sangers S, Raijmakers NJH (2026) Experiences and needs of patients facing incurable cancer and their relatives with informal care in psychosocial supporting centres in the Netherlands: A qualitative study. PLoS One 21(1): e0339703 . [https://doi.org/10.1371/journal.pone.0339703](https://doi.org/10.1371/journal.pone.0339703) Editor: Alexandre Morais Nunes, University of Lisbon, Institute of Social and Political Sciences, PORTUGAL Received: June 13, 2025 Accepted: December 10, 2025 Published: January 2, 2026 Peer Review History: PLOS recognizes the benefits of transparency in the peer review process; therefore, we enable the publication of all of the content of peer review and author responses alongside final, published articles. The editorial history of this article is available here: [https://doi.org/10.1371/journal](https://doi.org/10.1371/journal). pone.0339703 Copyright: © 2026 Siemelink et al. This is an open access article distributed under the terms RESEARCH ARTICLE Experiences and needs of patients facing incurable cancer and their relatives with informal care in psychosocial supporting centres in the Netherlands: A qualitative study Suzanne D. Siemelink1, Julia van Koeveringe1, Monique Bussmann2, Saskia van Veen3, Sandrina Sangers4, Natasja J.H. Raijmakers1* 1 Department of Research & Development, Netherlands Comprehensive Cancer Organisation (IKNL), Utrecht, The Netherlands, 2 Rotterdam University of Applied Sciences, Research Center Innovations in Care, Rotterdam, The Netherlands, 3 IPSO Branch Organization, Almere, The Netherlands, 4 Agora, Bunnik, The Netherlands * n. raijmakers@iknl. nl Abstract Purpose People facing incurable cancer need appropriate informal psychosocial care. This study examines the experiences and needs of visitors of IPSO centers (psychosocial supporting centers for life with and after cancer) for people facing incurable cancer in order to optimize the services provided by IPSO centers for this group. Method Semi-structured interviews were conducted with visitors of IPSO centers, both patients and relatives facing incurable cancer. The interviews were analyzed thematically. Eight themes and two sub themes were identified. Results In total, 18 patients and 13 relatives and bereaved relatives were interviewed. Participants expressed a strong need for understanding, exchanging information and finding ways to fill their days. They appreciated IPSO’s non-obligatory approach and highlight the value of sharing stories with others. Many participants experienced mixed peer groups including both people facing curable and incurable cancer, as uncomfortable. They emphasized the benefit of having separate peer groups for those facing incurable cancer, including able to talk openly about end of life and a deeper sense of understanding and connection. A few participants found these groups inaccessible due to a specific setup. Visitors also experience unpredictability and uncertainty from their illness, making planning difficult, which also affect their IPSO visit. PLOS One | [https://doi.org/10.1371/journal.pone.0339703](https://doi.org/10.1371/journal.pone.0339703) January 2, 2026 1 / 13 of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Data availability statement: Data cannot be shared publicly because the respondents did not give informed consent to share the transcripts publicly. This Informed Consent was assessed by the Institutional Review Board METC Brabant (approval number: NW2023- 20) . Data access requests may be directed to IKNL (info@iknl.nl, [https://www.iknl.nl](https://www.iknl.nl)). The complete anonymized transcripts may be made available upon reasonable request and subject to ethical approval and data sharing agreements. Funding: This study

FAQs

What is the main purpose of the study on IPSO psychosocial supporting centres?

To examine experiences and needs of IPSO visitors (patients and relatives) facing incurable cancer, in order to optimize services for this group.

How were data collected and analyzed?

Semi-structured interviews were conducted with visitors of IPSO centres, and the interviews were analyzed thematically.

What peer-group arrangement did participants prefer?

Participants often felt mixed groups (curable and incurable) were uncomfortable and emphasized the benefit of separate peer groups for those facing incurable cancer to discuss end of life openly and build deeper understanding and connection.

Sep 28, 2026

Uploaded by Pentious