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 Siemelink; Julia van Koeveringe; Monique Bussmann; Saskia van Veen; Sandrina Sangers; Natasja JH Raijmakers

doi:10.1371/journal.pone.0339703

. 2026 Jan 2;21(1):e0339703. doi: 10.1371/journal.pone.0339703

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 Siemelink ¹, Julia van Koeveringe ¹, Monique Bussmann ², Saskia van Veen ³, Sandrina Sangers ⁴, Natasja JH Raijmakers ^1,^*

Editor: Alexandre Morais Nunes⁵

PMCID: PMC12758698 PMID: 41481551

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.

Conclusion

IPSO centers play a crucial role in supporting people facing incurable cancer. To best meet their needs, it is essential to facilitate peer contact by organizing special peer groups or by introducing those facing incurable cancer to each other in another way. It is important to take into account accessibility. Further research should focus on individuals who need IPSO’s informal care but are not able to benefit from it due to their burden of disease.

Introduction

The incidence of cancer is increasing in the Netherlands, leading to an increasing number of people living with or after cancer. This trend illustrates the profound impact of cancer on patients, families, and healthcare systems. Also the number of patients diagnosed with incurable cancer is increasing, as one out of five cancer diagnoses is classified as metastatic disease [1]. This growing number of patients with metastatic cancer poses a considerable challenge for patients and their relatives [2–3] and for health care systems, underpinnning the essential role of informal care and self-management support. These developments highlights the growing societal and healthcare burden associated with cancer, particularly metastatic disease.

This underscores the need to address the specific challenges faced by patients with metastatic cancer. Patients with metastatic cancer are often facing incurable cancer and therefore in need of palliative care, which shifts the focus of treatment from curative intent towards managing symptoms and optimizing the quality of life. This approach consists of physical, emotional, social, and spiritual aspects [4]. Timely integration of palliative care is essential to address the complex needs of these patients [5–6].

Although palliative care addresses a wide range of needs, research shows that people facing incurable cancer still face unique social challenges, such as loneliness in the face of limited life expectancy [7] and a greater need for information about supportive care and end-of-life planning [2]. These findings suggest that the needs of people facing incurable cancer may differ from those of people facing curable cancer.

In order to meet these needs, support from both healthcare professionals and volunteers is essential. Volunteers are important in supporting patients with incurable cancer, as they can meet the multifaceted needs of patients and their families by providing support for the physical, psychological, social and spiritual aspects of the illness [8].

An important organization providing such volunteer support in the Netherlands is IPSO, IPSO centers for life with and after cancer. This national organization consists of 100 drop-in centers, all dedicated to providing volunteer-led support for people dealing with cancer [9]. These centers are either standalone facilities or located in proximity to hospitals. They offer free, psych-social, non-medical support provided by trained volunteers and professionals, aiming to improve quality of life and reduce isolation during and after cancer treatment. The support offered by IPSO include in-person support by volunteers (a listening ear, practical support), peer support, and workshops (creative, physical). The volunteers are trained and supervised by a professional coordinator. The services are open for everyone confronted with cancer as a patient, relative or bereaved relative. Visitors report that they visit IPSO centers primarily to relax, but also to seek professional advice and meet peers [10]. IPSO centers provide a unique and accessible form of informal care that addresses both practical and emotional needs of people affected by cancer.

The positive experiences of visitors highlight the value of these centers for people living with cancer [11]; and almost all visitors report that the IPSO centers meet their expectations and needs [10]. The study by Sinzer [11] showed that the vast majority of IPSO visitors experience a positive change on their wellbeing, particularly in relation to their mental wellbeing and social participation. Moreover, visitors often come multiple times to IPSO, one third visits once a month and one third visits IPSO longer than 3 years [11]. Furthermore, a recent research report showed that the societal benefit of IPSO is equivalent to 150000–200000 consultations with healthcare professionals annually [12]. These outcomes underline the potential of IPSO centers to contribute meaningfully to the wellbeing of patients with cancer and their families.

Despite these positive findings, little is known about how people with metastatic cancer experience this support. A better understanding of these is essential in order to optimize the services provided by IPSO centers. Therefore, this study aimed to assess the experiences and needs of visitors dealing with metastatic cancer concerning the supportive care of volunteers and peers within IPSO centers. This study aims to enhance understanding of the specific needs of patients and relatives faced with incurable cancer.

Method

Study design

A qualitative study grounded in a constructivist paradigm using semi-structured interviews was conducted to explore how IPSO visitors facing incurable cancer construct meaning from their experiences within the IPSO centers. For reporting, the COnsolidated criteria for REporting Qualitative research (COREQ) was used (S1 File). This study was exempted from full medical ethical review by the institutional review board METC Brabant (number: NW2023−20) in accordance with the Dutch Medical Research Involving Human Subjects Act.

Participants and setting

Participants were recruited between August 2023 and December 2023 using convenience sampling until data saturation was reached. Initially, the researcher approached the coordinators of various IPSO centers. These coordinators serve as trusted contacts within the IPSO centers and maintain low-threshold contact with the IPSO visitors. Subsequently, flyers were distributed for recruitment purposes within the center. Following this, coordinators were contacted by telephone, and the researcher visited IPSO centers for a brief introduction to the centers and their volunteers. The coordinators of the IPSO centers then approached visitors. When a visitor expressed interest in participating, they received an information letter from the research team, including an informed consent form. Interested visitors could then contact the research team. The researcher contacted the participants prior to the interview via telephone in order to further explain the study and, if desired, to schedule an appointment for the interview. All participants provided written consent for participating in the interviews. Visitors were eligible to participate if they were facing incurable cancer as a patient, a relative or a bereaved relative; were visitors of an IPSO center, were aged over 18 years, and spoke Dutch. These criteria were all self-reported and not crosschecked with the medical files.

Data collection

The interview guide was based on concepts emerging from the literature (including care needs on the four dimensions of palliative care, and peer support) and was developed in collaboration with an expert group from various organizations dedicated to palliative care (IPSO, Agora, VPTZ, and IKNL). The interview guide explored the participants’ experiences with IPSO, and their needs for informal care, subdivided into the four dimensions of palliative care (physical, emotional, social, and spiritual). The interview guide included various prompts and sub-questions per domain to promote more in-depth conversations (S 2 File). Participants were also asked to reflect on their experiences with IPSO and potential areas of improvement. A test interview was performed by JvK to evaluate the interview guide with a senior researcher with expertise in qualitative research in order to test the flow of the interview guide and to give feedback to JvK on her interview skills. Subsequently, the interview guide was adjusted based on the results of this test interview.

The interviews were conducted face-to-face between August 2023 and December 2023 (lasting approximately 60 minutes). The interviews took place either at the IPSO center that the participant visited or at the participant’s home, ensuring a comfortable and convenient environment for the participant.

All interviews were conducted by JvK (MSc), a female junior researcher with experience in interviewing and qualitative research. The researcher works for the Dutch Comprehensive Cancer Organisation, which is not associated with or related to IPSO centers. Therefore, the independency of the researcher was warranted. No extensive field notes were made during the interviews. Before the start of the interview, sociodemographic information was collected and the participants self-reported about their age, gender, marital status, level of education (using the International Standard Classification of Education) and working situation. The interviews were audio-recorded and transcribed verbatim. All participants received a gift voucher of 20 euros after the interview as an acknowledgement of their participation in the study.

Data analysis

Analysis of the interviews began during the data collection to enable the researcher to adjust the topic guide where needed (constant comparison) and to determine whether data saturation was reached. Data saturation was based on the description by Morse [13]. Data saturation occurs when categories are theoretically rich and internally coherent. To ensure data saturation in this study, we analyzed the interviews iteratively, comparing emerging themes across participants and refining conceptual categories until no new themes emerged. A total of 20 interviews with patients and 20 interviews with relatives was expected to reach data saturation. This number aligns with established guidelines for qualitative research saturation.

All interviews were coded through thematic analysis, a qualitative analysis technique suitable for exploring themes and patterns within the data. We used the following 6 steps: (1) familiarization with the data, (2) generating initial codes, (3) searching for themes, (4) reviewing themes, and (5) defining and naming themes, and (6) producing the report. The analysis process aimed to identify recurring themes and key patterns related to the research objectives. We conducted an inductive analysis, allowing themes to emerge from the data rather than applying a pre-existing coding frame. We focused on the semantic level of analysis, interpreting the explicit content of the interviews.

Two researchers (JvK and LB) independently coded three transcripts. These initial codes were discussed and compared until consensus was reached. Remaining transcripts were coded by JvK after which the researchers JvK, LB and NR discussed the main (sub)themes, derived from the data. Subsequently, another researcher (SS) also coded more than half of all transcripts (n = 18) and discussed this coding with LB, NR and MB until consensus was reached on the final main themes and subthemes. Participants were not asked to provide feedback on the findings. The software package Atlas.ti 24.2.1 for qualitative research analysis was used for data analysis.

Results

A total of 31 participants were recruited from 19 different IPSO centers, ranging from 1 to 6 participants per center. The participants ‘age (18 patients and 13 relatives and bereaved relatives) ranged from 20 to 80 years old. Most participants (52%) were ranged between 40 and 65 years old (Table 1).

Table 1. Sociodemographic characteristics of visitors facing incurable cancer of IPSO centers.

	IPSO visitors – patients	IPSO visitors – relatives and bereaved relatives
	(n = 18) N (%)	(n = 13) N (%)
Gender
Male	5 (28%)	4 (31%)
Female	13 (72%)	9 (69%)
Age (years)
20-40	5 (28%)	1 (8%)
40-65	10 (56%)	6 (46%)
65-80	3 (17%)	6 (46%)
Marital status
Married	17 (94%)	6 (46%)
Not married	1 (6%)	1 (8%)
Widow	0 (0%)	6 (46%)
Level of education ¹
Low	14 (78%)	5 (38%)
Medium	0 (0%)	6 (46%)
High	4 (22%)	2 (15%)
Working situation
Employed	2 (11%)	4 (31%)
Unemployed	2 (11%)	2 (15%)
Incapacitated	10 (56%)	1 (8%)
Retired	3 (17%)	5 (38%)
Volunteer	1 (6%)	1 (8%)

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1) Education was self-reported by the participants and defined according to the guidelines of the International Standard Classification of Education as low (no education, pre-primary education, primary education, lower secondary education, compulsory education, initial vocational education), medium (upper secondary general education, basic vocational education, secondary vocational education, post-secondary education) and high (specialized vocational education, university/college education, (post)doctorate and equivalent degrees).

A total of 8 themes and two subthemes belonging to either “experiences” or “needs” were identified (Table 2).

Table 2. Overview categories, themes and subthemes.

Category	Theme	Sub theme
Experiences of visitors dealing with incurable cancer with IPSO centers	Sharing stories and experiencing recognition A warm place without requirements Feeling out of place among peers who are not facing incurable cancer Special peer groups with people facing incurable cancer	A valuable concept The set-up: not always easy to access
Needs of visitors facing incurable cancer	A need for understanding A need for information A need to fill the day A need to visit while not being able to

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Experiences of visitors facing incurable cancer with IPSO centers

The following four themes and two sub themes relate to the experiences of participants within IPSO centers. The experiences of patients, relatives and bereaved relatives are not described separately, but are combined together.

Sharing stories and experiencing recognition

Many participants reported that they feel comfortable sharing their stories in IPSO centers, which is one of the reasons why they keep coming back. Some preferred to share their stories with peers, others prefer to share them with volunteers of IPSO, sometimes specifically one-on-one. Many participants indicated that they feel heard and experienced recognition.

“Recognition. And feeling that people understand what you’re talking about. But I also really enjoy listening. To hear how someone else experiences and deals with it.” (Relative 27)

When sharing their story, participants experienced a sense of recognition and acknowledgment among others. This helped them to cope with the incurable cancer.

“And well, since then, that walk-in house has been a great support for my wife, and therefore also for me, to process. My wife, the fact that she was so ill. And for me, just the fact that there is indeed a non-medical institution that still offers warmth and genuine interest and attention. So you come into an environment with people who understand you, who understand my wife.” (Relative 29)

In addition, visiting an IPSO center helped them to put things, like emotions, into perspective or to find something positive, especially when listening to other peoples’ stories.

“When you’ve spoken here, or been here, you leave it here, and then you can just continue life at home.” (Patient 3)

A warm place without requirements

Participants indicated that they experienced some barriers to visiting the IPSO center, but once they went, they found the IPSO center to be a warm, pleasant and welcoming place. When they visit the IPSO center, they received warm attention and felt being seen.

“My neighbor said, ‘Come on, let’s go together,’ which was very nice. And then I was here, and I thought, what have I been worrying about all this time? Because you really come into such a warm bath, and that is so nice.” (Patient 16)

“You immediately feel very welcome there. Among other things, because they make the effort to remember who you are. It’s always like, when I walk in, ‘Hey [name], how are you?’ Yes, that contributes to the feeling that you are seen.” (Patient 9)

Moreover, many participants appreciated IPSO’s open approach, which allowed them to visit when it suits them. In addition, most participants experienced the volunteers of IPSO working as host as approachable and felt that IPSO is a place where they can always turn to.

“If I need something, like when I come in this morning and can tell my story, then I can get it off my chest. And I don’t always have to, but if I want to then I can.” (Patient 1)

Feeling out of place among peers who are not facing incurable cancer

Some participants participated in mixed peer groups, consisting of visitors with cancer from all stages of the disease, ranging from recently diagnosed, under treatment, cured and incurably ill. Most of them expressed that they often feel out of place in such mixed peer groups. They felt they could not speak freely in these mixed groups, because they were afraid of burdening others with their story of terminal illness or taking away hope from those who had a chance of recovery.

“And that is my own barrier [...] that I often found it difficult, because it is very clear that I will not get better. And with that, I felt a bit like I also represent the fear of many other people who are there. Not everyone who comes there doesn’t get better. [...] And that’s why I find it difficult to really say what is bothering me.” (Patient 18)

“And what I also said to you, yes, I would really weigh my words carefully because I want to handle that cautiously.” (Patient 7)

Some participants experienced it as painful to participate in a mixed peer group, as it

was confronting for them to hear that people with curable cancer were returning to their original lives again, which was not the case for them.

“The group I first joined, I’m considering leaving it. Because I notice that they continue with their lives, and that’s very understandable. And I think... yes, that’s difficult.” (Patient 3)

“Because they talk about how to deal with some complaints while they are better, or getting better in their lives. And we have to learn to live with it, but yes, our final destination is, of course, death, and hopefully not for them for a long time. So you have different conversations.” (Patient 2)

Special peer groups with people facing incurable cancer

In some IPSO centers, special peer groups are organized specifically for visitors facing incurable cancer and sometimes even specifically for patients facing incurable cancer, for relatives or bereaved relatives.

A valuable concept

These special peer groups for people facing incurable cancer are generally perceived as very valuable by the participants. They experienced it as a unique setting where they can talk openly and freely about their situation, including end of life, energy management and time allocation.

“You understand each other on a completely different level because you share that with each other. For me, it is a very safe place because I can talk about the fact that I have to deal with my mortality there [...] I really enjoy sitting at a table with people and exchanging thoughts who are also in that situation. [...] It is, in any case, a topic that you can hardly discuss anywhere else, in my opinion.” (Patient 9)

Participants reported that it is very easy to connect with people who are dealing with the same situation. Some participants explicitly reported a deep sense of understanding and connection in these groups and many experienced recognition in their peers.

“It’s really different when you talk to people who are in the same boat. And also to talk about wishes or desires or things you just can’t do anymore, it seems like it’s easier to mention those things.” (Patient 18)

In some IPSO-centers special peer groups for relatives or bereaved relatives are organized. Participants reported the same positive experiences about these groups.

“And when it’s also with those who are bereaved, it feels very familiar. A woman who also had a husband who died of pancreatic cancer [...]. So I think, yes... that’s just pleasant. She knows what it is like.” (Bereaved relative 24)

Not all participants expressed having a need for specific peer group for visitors facing incurable cancer for example, because they believed the focus here is on the end of life.

The set-up: not always easy to access

IPSO centers organize special peer groups for people with palliative cancer in different set-ups. Some peer groups take place in the form of a walking group, which is experienced in various ways. Although some participants reported to enjoy the set-up of a walking group, some other participants reported that the distinct set-up resulted in them being excluded from participating. These participants could not participate due to physical limitations and were not able to join a special peer group for people facing incurable cancer, as this group was the only existing special peer group in their IPSO center.

“I think it’s wonderful, but when I read ‘in [name of nature reserve],’ I thought, well, I don’t think I can manage that, you know. And they walk an average of 5 kilometers.” (Patient 10)

Needs of visitors facing incurable cancer

The following four themes relate to participants’ needs, in the context of IPSO. The experiences of patients and relatives are, again, not described separately, but are combined together.

A need for understanding

Many participants reported that they find it difficult to talk about their illness and situation with their family and friends. Some participants reported feeling frustrated by how their social environment talks to them about their illness. According to participants, their illness as a topic is avoided by many or overemphasized by others. In addition, participants indicated that their environment sometimes misinterprets them when they talk about how they are doing. Participants express to find this frustrating.

Others reported being able to openly discuss their illness with loved ones and receiving a lot of love and support from them. However, they still expressed a need for real understanding as no one around them truly understands what it is like to live with the knowledge that they are incurable.

“In the beginning, I really struggled with the fact that when you talk to friends or family, or at home with my wife or the children, for example, everyone understands the situation to a certain extent, but no one understands 100%, let’s say, what it’s like to hear that you won’t get better. Everyone can imagine it to a certain extent. And at some point, I ran into that, that you can talk to people.” (Patient 8)

Some participants also expressed a need for understanding and attention to the personal impact of the disease, as these aspects were not addressed in the hospital.

“There is rarely anything asked about the psychosocial side, or the experience of the disease, which is really a secondary thing.” (Patient 10)

A need for information

Participants have different information needs, including information about the disease and specific treatments and information about what to expect in terms of the course of the disease and the end of life. Participants also expressed the need for practical information about what they need to arrange when approaching the end of life (e.g., advance care planning, financially).

“Of course, palliative care does have its own specific questions, you could say.” (Patient 3)

Finally, they appear to need a point of contact who can advise them on which authority to contact on which question. The latter is particularly true for participants who find themselves in a palliative stage for some time and whose health situation is quite stable. They experienced an information gap because they are no longer treated in the hospital.

Participants gather this information in different ways, some reported they exchange tips and information during peer group sessions, while others attended IPSO information evenings focused on palliative care. Although some participants indicated that they were sometimes unsure whether IPSO was the right place for their questions, they were always listened to and the IPSO volunteers were always willing to engage thoughtfully with their concerns, which made them feel satisfied.

“Exactly, so now that I’m at [name of IPSO center] and have a good feeling about it, I also know that if I need something, I can turn to them, and if they not be able to help me, they know where I should be then, and that gives peace of mind, and that’s actually enough.” (Relative 27)

Finding ways to fill the day

Participants who are quite stable in the palliative phase, expressed a clear need to find meaningful ways to fill their days, as they no longer spend much time in medical settings. This challenge is an issue that concerns quite some participants, especially for those who had to give up their job because of their illness with little likelihood of returning. With longer life expectancies and relatively high energy levels compared to those with more rapidly progressing conditions, these participants feel a clear need for purposeful activities. Many participants fulfilled this need by making visits to IPSO.

(In response to the question of what this participant hoped to find at IPSO)

“‘A bit of daytime activity, because I have quite an extensive network, you know, I do a lot, still in the evenings and on weekends. But during the weekdays, during the day, all my friends are working.” (Patient 4)

A need to visit while not being able to

Participants indicated sometimes being unable to visit IPSO even though they have a need for it. Some participants said this was because their illness, or of their loved one, requires a lot of their time, due to frequent hospital visits or the amount of care taking. Some relatives indicated they therefore did not have time to visit IPSO at all. They started to visit IPSO after the death of their loved one.

“No, but this is of course something quite recent that things are going well again. If you had come a month ago, I was really out of it, I couldn’t do anything.” (Patient 18)

“And when my husband was almost dying, I did not go anymore because I could only be at home. But when he passed away, [name IPSO host] asked if I still wanted to talk. I think that’s actually just as important, that you are still heard and can talk afterwards. Because during the time he was sick, you are only busy with caring, and I had really made it my goal to make his quality of life as good and comfortable as possible. And that worked, I’m very happy about that. But afterwards, it’s your turn a bit.” (Relative 28)

Some participants were confronted with an unpredictable course of their illness, or experienced many ups and downs physically. This makes it difficult to plan a visit in advance, as one often doesn’t know one’s condition. According to participants it sometimes occurred they don’t visit IPSO for times because they are too weak to do so.

“What is most present now is the uncertainty. That is very specific to this phase. Not this weekend, but the weekend after, I have booked a city trip to Berlin, taking my mobility scooter, things like that. [...] But it might not happen at all, you know. And I don’t know. Is this still 2 months, is this half a year? And that is, of course, very different from being in the middle of the treatment phase.” (Patient 18)

“Yes, I have had really bad times, where I was just not able to go.” (Patient 18)

Moreover, some participants reported having concerns about how to continue attending IPSO in the future as their disease progresses.

“Because sometimes I think, how will I get here if I can’t drive anymore? [...] If you use morphine, you are not allowed to drive. Then you start thinking, if it becomes permanent in the future, how will you still get here, because you want to keep coming.” (Patient 7)

Discussion

Main results

This study explores the experiences and needs of visitors of IPSO Centers for life with and after cancer, who are facing incurable cancer. Regarding the four dimensions of palliative care, which are psychological, physical, social and existential, we found that visitors of IPSO facing incurable cancer have specific needs mainly in relation to the psychological and social dimensions. Besides that, this group experienced IPSO centers as very positive and of great value in coping with their incurable disease, especially through connecting with peers. The participants also reported the added value of dedicated peer groups for patients or relatives facing incurable cancer, as they felt able to talk openly about end of life and experienced a deeper sense of understanding and connection. However, the volatility and unpredictability of the disease makes that they cannot always visit IPSO when they have a need to and hampers the practical aspects of organizing dedicated peer groups.

A finding that deserves particular attention relates to dedicated peer support for patients and relatives facing incurable cancer. Notably many visitors facing incurable cancer feel out of place in peer groups that also include visitors dealing with curable cancer. In addition, attending dedicated palliative peer groups are experienced as very positive, as also described by Li et al. [14]. Research on peer support for patients with incurable or advanced cancer is scarce, as shown by Walshe et al. in a scoping review [15]. However, a recent feasibility study in the UK showed promising results of dedicated peer support for patients with advanced cancer. The recruitment of peer mentors (with advanced cancer) was unproblematic, the recruitment of participants was challenging, and this feasibility study showed promising results, indicating a positive effect on QoL [16] These findings align with our visitors’ need to be understood and are mutually reinforcing.

Visitors report that their need to visit an IPSO center sometimes cannot be met due to the time demands of their illness or because the course of the illness involves a lot of uncertainty and volatility. “The high symptom burden in people with incurable cancer has been known for some time [17], but the uncertainty is a relatively recent development in incurable cancer [18]. Geijteman et al. [18] conclude that patients facing incurable cancer are living longer because of better treatment options, but in greater uncertainty. They also point out the physical, psychological, social and spiritual challenges this development brings to patients [18]. This development shows that the variety in needs within the group of people facing incurable cancer increases. This requires a more flexible approach regarding the services of IPSO.

Implications and further research

This study highlights the importance of tailoring psychosocial support for patients and families facing incurable cancer.

The findings underscore the need for dedicated peer groups that address the unique emotional and existential challenges, as mixed groups with curable cancer patients may inadvertently hinder open dialogue. Finally, for volunteers, it is important to be well informed about the needs and experiences of visitors facing incurable cancer, including advance care planning, end-of-life care, and bereavement.

A key recommendation for future research is to investigate how many individuals facing incurable cancer may need informal care but are unable to access it due to their substantial burden of illness. It is important to explore the extent to which these illness-related limitations affect access to informal support in order to develop appropriate tailored care for this group. Future research should also explore flexible and accessible models of support that respond to evolving needs and symptom burdens, while also reflecting the cultural diversity of participants and their potentially cultural-specific needs. While many current visitors have a Western European background, it is important to examine how IPSO can optimize its services in terms of accessibility and culturally suitability for individuals from non-Western European backgrounds. Additionally, investigating digital or hybrid formats for peer support may offer promising avenues to overcome practical barriers related to physical attendance and timing.

By exploring in depth these aspects in future research, IPSO centers could better address the needs of its visitors in the palliative phase and optimize their support structures, including digital or hybrid formats for peer support. This will not only improve the experience of current visitors, but also help visitors who may not return or don’t visit at all to receive the informal supportive care they need.

Strengths and limitations

A limitation of the study is that as the study focused on visitors, their experiences will be predominantly positive; otherwise, they would not continue to visit. In addition, as the coordinator was free to choose who he/she approached to participate in the study, this may also lead to a positive bias. This limits the richness of the findings.

A strength of the study is the diversity of the participants. Participants were recruited from many different IPSO centers and since IPSO centers differ in offering various activities and may also be organized somewhat differently, this provides a broad view of the experiences and needs of IPSO visitors facing incurable cancer. As IPSO centers vary considerable in size and support, this study contains a great richness in experiences and needs of IPSO visitors facing incurable cancer. Due to the lack of contextual information about participants, such as their ethnicity and specific cancer type, it is difficult to assess whether this may have influenced their experience at IPSO.

Conclusion

IPSO centers play a crucial role in supporting people facing incurable cancer. It is essential to facilitate peer contact by organizing dedicated peer groups or by introducing those facing incurable cancer to each other in another way, as their need to be understood, their need for information, and their need to fill the day may be addressed through peer contact. When organizing specific activities for visitors facing incurable cancer, it can be recommended to take into account flexibility and accessibility, considering the unpredictable and volatile course of their disease.

Supporting information

S1 File. This is the COREQ checklist.

(DOCX)

pone.0339703.s001.docx^{(29.7KB, docx)}

S2 File. This is the interview guide.

(DOCX)

pone.0339703.s002.docx^{(48.7KB, docx)}

Acknowledgments

We would like to thank all patients and relatives who participated in the interview study.

Data Availability

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). The complete anonymized transcripts may be made available upon reasonable request and subject to ethical approval and data sharing agreements.

Funding Statement

This study was financially supported by the Dutch Cancer Society (project 15139). There was no additional external funding received for this study.

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PLoS One. doi: 10.1371/journal.pone.0339703.r001

Decision Letter 0

Gursharan Singh

19 Aug 2025

Dear Dr. Raijmakers,

Thank you for submitting your manuscript to PLOS ONE. After careful consideration, we feel that it has merit but does not fully meet PLOS ONE’s publication criteria as it currently stands. Therefore, we invite you to submit a revised version of the manuscript that addresses the points raised during the review process.

==============================

ACADEMIC EDITOR: Dear Authors, could you please address the feedback suggested by the two reviewers. Additionally, in the abstract it states ‘in order to realise an appropriate fit at IPSO for this group’ is unclear. Could this please be amended? Perhaps ‘to optimise the services provided by IPSO centers’ as per the introduction. Additionally, the COREQ guidelines are missing for this submission as well as the interview guide as supplementary material

==============================

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Reviewers' comments:

Reviewer's Responses to Questions

Comments to the Author

1. Is the manuscript technically sound, and do the data support the conclusions?

Reviewer #1: Yes

Reviewer #2: Yes

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2. Has the statistical analysis been performed appropriately and rigorously? -->?>

Reviewer #1: N/A

Reviewer #2: N/A

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3. Have the authors made all data underlying the findings in their manuscript fully available??>

The PLOS Data policy

Reviewer #1: No

Reviewer #2: No

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4. Is the manuscript presented in an intelligible fashion and written in standard English??>

Reviewer #1: Yes

Reviewer #2: Yes

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Reviewer #1: Thank you for the opportunity to review the paper titled “Experiences and needs of patients with incurable cancer and their relatives with informal care in psychosocial supporting centres in the Netherlands: a qualitative study”. This paper describes the experiences and needs of people impacted by incurable cancer who visited an IPSO centre in The Netherlands for supportive care. The paper provides some insightful findings regarding the value and suitability of these services for this population group. Please see my detailed comments below.

Criteria:

1. The study presents the results of original research. Yes.

2. Results reported have not been published elsewhere. Yes.

3. Experiments, statistics, and other analyses are performed to a high technical standard and are described in sufficient detail. Yes.

4. Conclusions are presented in an appropriate fashion and are supported by the data. Please see my suggested edits below.

5. The article is presented in an intelligible fashion and is written in standard English. Predominantly. Please see minor suggestions below.

6. The research meets all applicable standards for the ethics of experimentation and research integrity. Yes.

7. The article adheres to appropriate reporting guidelines and community standards for data availability. Unsure - I am unable to see the completed COREQ checklist.

Abstract:

• Line 12, page 2 – this sentence would be better suited to your Results section.

• If word count permits, please briefly elaborate on the perceived benefits of having separate peer groups for those with incurable cancer, and what aspects of the group set-ups made them inaccessible for some participants.

Introduction:

• Overall, the introduction is well-written and provides a clear and concise overview of what is currently known on this topic and justification for the aims of this study.

• I would recommend reviewing the paragraph structure in the introduction to improve readability. Ensure each paragraph includes a clear topic and concluding or linking sentence.

• Please provide a short explanation of what is meant by ‘informal caregiver’ in this study and expand on the justification as to why it is important to consider the perspectives of this population group, particularly in the context of incurable cancer.

• Line 22, page 3 – if possible, please define the acronym ‘IPSO’. I would also suggest tweaking the wording slightly to ensure it’s clear that this organisation offers ‘volunteer-led’ support, rather than support for volunteers per se. In addition, could you elaborate further on the reach of this organisation? For example, how widely distributed are the centres? Do they offer online/telephone support in addition to in-person support? Are services accessible free of charge? What are their opening days/hours? Are services general or targeted to specific groups including those impacted by incurable cancer?)

• Lines 1-2, page 4 – ensure consistency in the punctuation of ‘wellbeing’.

• Line 3, page 4 – ‘impact’ on what? Please elaborate.

• Lines 4, page 4 – are decimal places on these numbers necessary?

Methods:

• The authors stated that they used the COREQ checklist for their reporting; however, I cannot see this. Could the authors please confirm if this was submitted with their manuscript?

• Could the authors please elaborate on how purposive sampling was used? For example, did they purposively recruit to ensure variation in age, gender, and other demographic characteristics, or focus on people with specific experiences with the IPSO service? Otherwise, I wonder if this is more convenience sampling.

• How many IPSO centres were contacted and then subsequently agreed to distribute recruitment flyers to their visitors?

• How was study eligibility for each visitor assessed?

• I commend the authors for collaboratively developing an interview guide based on a review of the literature and expert opinion, and for piloting this interview guide before use. I encourage the authors to include this guide in their Supplementary Materials, and to provide more detail on the following: i) what concepts were identified in the literature review and subsequently applied to the interview guide? ii) who was the interview piloted with?

• The authors have indicated that ‘data saturation’ was defined based on the description by Morse (1995). To support reader understanding, could the authors please elaborate on how this definition was applied in the context of their study?

• Please provide a citation for the data analysis method used. It seems to reflect more of a thematic analysis approach rather than a content analysis approach.

• Demographic characteristics of participants are reported. Please clarify in Methods how these data were collected.

Results:

• Table 1 - I am not sure I understand the footnote about level of education. Please provide further explanation. I have also not seen education categorised as ‘low’, ‘middle’, and ‘high’ before – for an international audience, please define what these represent.

• Line 2, page 8 – I do not think it is necessary to repeat the sample size – either report it in the Methods or Results. If possible, I encourage the authors to include a participant flow diagram showing the number of i) visitors to the IPSO centres and/or visitors approached during recruitment, ii) visitors screened as eligible, iii) visitors who consented to participate, and iv) visitors who completed an interview, to improve transparency around recruitment and sampling. As per the COREQ checklist, this should also include reasons for not participating.

• Line 3, page 9 – ‘IPSO hosts’ is a new term here that has not yet been introduced. Please clarify what is meant by this.

• Lines 30-31, page 11 – could the authors please elaborate on this finding by explaining why some people did not perceive it necessary (or ideal) to have specific peer groups for people impacted by incurable cancer?

• Line 21-23, page 12 – “Participants indicated that their environment sometimes draws the wrong conclusions when they talk about how they are doing, which they find frustrating” – I am a little unsure what is meant by this. Could the authors please clarify (or perhaps include an example)?

• Line 8-9, page 13 – the second use of the word ‘practical[ly]’ is somewhat redundant in this sentence.

• I think it would be worthwhile including a quote to illustrate the theme of ‘a need for information’ specifically one that highlights the need for disease-specific and/or practical information.

• Lines 10-11, page 14 – avoid using contraction words – e.g., ‘didn’t’.

Discussion and conclusion:

• Overall, the authors have raised some important points regarding the suitability and value of supportive care services, such as those offered at IPSO centres, for people impacted by incurable cancer, that emerged from their findings. I recommend that the authors elaborate further on their findings regarding peer groups that are exclusive to people diagnosed with incurable cancer or to bereaved relatives. Given that not all participants supported this approach, further discussion of the perceived advantages and disadvantages would strengthen the interpretation of these findings. I also recommend that the authors compare their findings to previous research conducted with IPSO visitors, to demonstrate the novelty and uniqueness of their findings for people impacted by incurable cancer.

• Line 25, page 15 – please check the punctuation here. There is an inverted comma at the beginning of a sentence.

• Line 30, page 15 – remove ‘that’.

• For improved flow, I would suggest including the ‘Implications and further research’ section above ‘Strengths and limitations’

Strengths and limitations:

• To clarify, were all participants returning visitors as opposed to once-off visitors? If so, this should be clarified in Methods.

• Another limitation could be a lack of contextual information for individual participants that could have an impact on their experience with the service (e.g., race/ethnicity, geographic remoteness, cancer type, duration and nature of engagement with services in the IPOC centres).

Implications:

• Lines 13-19, page 16 – perhaps provide some specific examples of how these recommendations could be achieved.

Conclusion:

• Line 6, page 17 – Please soften the language of “[needs]…will be addressed through peer contact”. The findings of this study allude to the fact that special peer groups may be of benefit to some people impacted by incurable cancer, but we cannot say for sure that these groups will address all the aforementioned needs.

Reviewer #2: Data availability:

I completely understand that raw qualitative data is not appropriate to be made available publicly due to ethical/confidentiality concerns; I simply feel this needs to be stated more clearly in the submission.

Please see attached file for all other feedback.

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what does this mean? ). If published, this will include your full peer review and any attached files.

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Reviewer #1: No

Reviewer #2: No

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Attachment

Submitted filename: PONE-D-25-30108_Review comments_20250814.docx

pone.0339703.s003.docx^{(17.6KB, docx)}

PLoS One. 2026 Jan 2;21(1):e0339703. doi: 10.1371/journal.pone.0339703.r002

Author response to Decision Letter 1

29 Oct 2025

Response to reviewers:

Reviewer #1:

Thank you for the opportunity to review the paper titled “Experiences and needs of patients with incurable cancer and their relatives with informal care in psychosocial supporting centres in the Netherlands: a qualitative study”. This paper describes the experiences and needs of people impacted by incurable cancer who visited an IPSO centre in The Netherlands for supportive care. The paper provides some insightful findings regarding the value and suitability of these services for this population group. Please see my detailed comments below.

Response: We thank the reviewer for the thorough review and nice words regarding our manuscript.

Abstract

1. Line 12, page 2 – this sentence would be better suited to your Results section.

Response: We thank the reviewer for this comment and have replaced this line to the Results section.

2. Abstract: If word count permits, please briefly elaborate on the perceived benefits of having separate peer groups for those with incurable cancer, and what aspects of the group set-ups made them inaccessible for some participants.

Response: We thank the reviewer for this comment and have added the perceived benefits of a separate peer group to the results, see page 2, line 22 “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”

Introduction:

3. Overall, the introduction is well-written and provides a clear and concise overview of what is currently known on this topic and justification for the aims of this study.

Response: Thank you

4. I would recommend reviewing the paragraph structure in the introduction to improve readability. Ensure each paragraph includes a clear topic and concluding or linking sentence.

Response: Thank you for this comment, we have revised the paragraph structure of the introduction and have added linking sentences to it, see page 3-4

5. Please provide a short explanation of what is meant by ‘informal caregiver’ in this study and expand on the justification as to why it is important to consider the perspectives of this population group, particularly in the context of incurable cancer.

Response: Thank you for this comment, we understand the confusion. In this context, an informal caregiver is a person who provides care and support to someone with incurable cancer without being paid or professionally trained. They are often family members, friends, neighbours, or other close contacts of the person receiving care. Caregivers who work at IPSO are trained, and therefore are addressed as volunteers in our manuscript. They are important for this population as they can provide extensive psychosocial support, where the time of formal / medical caregivers is limited.

6. Line 22, page 3 – if possible, please define the acronym ‘IPSO’. I would also suggest tweaking the wording slightly to ensure it’s clear that this organisation offers ‘volunteer-led’ support, rather than support for volunteers per se. In addition, could you elaborate further on the reach of this organisation? For example, how widely distributed are the centres? Do they offer online/telephone support in addition to in-person support? Are services accessible free of charge? What are their opening days/hours? Are services general or targeted to specific groups including those impacted by incurable cancer?)

Response: Thank you for this comment, we have added additional information about the IPSO centers in the Netherlands, see page 3. “This national organization consists of 100 drop-in centers, all dedicated to providing volunteer-led support for people dealing with cancer [9]. The support offered by these IPSO include in-person support by volunteers (a listening ear, practical support), peer support, and participation in workshops (creative, physical). The volunteers are trained and supervised by a professional coordinator. Visitors report that they visit IPSO centers primarily to relax, but also to seek professional advice and meet peers [10]. IPSO centers provide a unique and accessible form of informal care that addresses both practical and emotional needs of people affected by cancer.” and page 4: “Most services are open for everyone confronted with cancer as a patient, relative or bereaved relative and not specifically targeted”

7. Lines 1-2, page 4 – ensure consistency in the punctuation of ‘wellbeing’.

Response: We have checked consistency of wellbeing and changed it all to wellbeing.

8. Line 3, page 4 – ‘impact’ on what? Please elaborate.

Response: Thank your for pointing this out. We have changed impact into societal benefits, as this study was on the benefits of IPSO for our society and our healthcare system.

9. Lines 4, page 4 – are decimal places on these numbers necessary?

Response: We agree with the reviewer and have removed the decimals.

Methods:

10. The authors stated that they used the COREQ checklist for their reporting; however, I cannot see this. Could the authors please confirm if this was submitted with their manuscript?

Response: We have added the COREQ checklist to the submission. Unfortunately, this did not go through at the first submission.

11. Could the authors please elaborate on how purposive sampling was used? For example, did they purposively recruit to ensure variation in age, gender, and other demographic characteristics, or focus on people with specific experiences with the IPSO service? Otherwise, I wonder if this is more convenience sampling.

Response: We agree with the reviewer that our sampling was more convenience sampling. We did try to have a variation in the role (patient and relatives), but this was marginal. We have altered this in the Method section.

12. How many IPSO centres were contacted and then subsequently agreed to distribute recruitment flyers to their visitors?

Response: All IPSO centers were contacted and received information about the project, including the recruitment flyer, but not all responded. In total, we recruited patients and relatives in 19 different IPSO centers. We have added this information to the Result section, see page 9” “A total of 31 participants were recruited from 19 different IPSO centers, ranging from 1 to 6 participants per center. The participants ‘age (18 patients and 13 relatives and bereaved relatives) ranged from 20 to 80 years old.”

13. How was study eligibility for each visitor assessed?

Response: All IPSO visitors (patients and relatives) were eligible for participation when facing incurable cancer. Incurable cancer was self-reported by the participants and not checked with their medical file. Furthermore, their age was also self-reported at the beginning of the interview. The exclusion criteria of having severe mental illness or psychological problems was not officially assessed and therefore we have removed it from the manuscript. Furthermore, we have added information about age and diagnosis to the manuscript, see page 5. “These criteria were all self-reported and not crosschecked with the medical files.”

14. I commend the authors for collaboratively developing an interview guide based on a review of the literature and expert opinion, and for piloting this interview guide before use. I encourage the authors to include this guide in their Supplementary Materials, and to provide more detail on the following: i) what concepts were identified in the literature review and subsequently applied to the interview guide? ii) who was the interview piloted with?

Response: Thank you for your kind words. We have added the interview guide to the Supplementary Materials and additional information about the literature review and pilot test, see page 5-6. “The interview guide was based on concepts emerging from the literature (including care needs on the four dimensions of palliative care, and peer support) and was developed in collaboration with an expert group from various organizations dedicated to palliative care (IPSO, Agora, VPTZ, and IKNL).”

15. The authors have indicated that ‘data saturation’ was defined based on the description by Morse (1995). To support reader understanding, could the authors please elaborate on how this definition was applied in the context of their study?

Response: Thank you for this remark. We have added additional information to the manuscript to show how we applied this in our study, see page 6: “Data saturation was based on the description by Morse [13]. Data saturation occurs when categories are theoretically rich and internally coherent. To ensure data saturation in this study, we analysed the interviews iteratively, comparing emerging themes across participants and refining conceptual categories until no new insights were observed.”

16. Please provide a citation for the data analysis method used. It seems to reflect more of a thematic analysis approach rather than a content analysis approach.

Response: Thank you for pointing this out. We totally agree with the reviewer that we used a thematic analysis approach. The word content was wrong for which we apologise and has been removed accordingly.

17. Demographic characteristics of participants are reported. Please clarify in Methods how these data were collected.

Response: We have added this information to the manuscript, see page 6 “Before the start of the interview, sociodemographic information was asked and the participants self-reported about their age, gender, marital status, level of education and working situation.”

Results:

18. Table 1 - I am not sure I understand the footnote about level of education. Please provide further explanation. I have also not seen education categorised as ‘low’, ‘middle’, and ‘high’ before – for an international audience, please define what these represent.

Response: Thank you for this comment. We have used the guidelines of the International Standard Classification of Education to define the level of education, based on the self-reported education of the participants. To make this clear, we have added to following information as footnote to Table 1: “Education was self-reported by the participants and defined according to the guidelines of the International Standard Classification of Education as low (no education, pre-primary education, primary education, lower secondary education, compulsory education, initial vocational education), medium (upper secondary general education, basic vocational education, secondary vocational education, post-secondary education) and high (specialized vocational education, university/college education, (post)doctorate and equivalent degrees).|”

19. Line 2, page 8 – I do not think it is necessary to repeat the sample size – either report it in the Methods or Results. If possible, I encourage the authors to include a participant flow diagram showing the number of i) visitors to the IPSO centres and/or visitors approached during recruitment, ii) visitors screened as eligible, iii) visitors who consented to participate, and iv) visitors who completed an interview, to improve transparency around recruitment and sampling. As per the COREQ checklist, this should also include reasons for not participating.

Response: Thank you for your feedback, we have removed the sample size from the Methods, as we believe it is more appropriate in the Results. To improve the clarity of the participants flow, we have added extra information about the number of IPSO centers, and number of participants per center included. Unfortunately, we have no information on the persons who were asked but were not interested in participating. See page 9” “A total of 31 participants were recruited from 19 different IPSO centers, ranging from 1 to 6 participants per center. The participants ‘age (18 patients and 13 relatives and bereaved relatives) ranged from 20 to 80 years old.”

20. Line 3, page 9 – ‘IPSO hosts’ is a new term here that has not yet been introduced. Please clarify what is meant by this.

Response: Thank you for your question. A IPSO host is a volunteer who has the task to welcome all visitors to the IPSO center and to provide them with coffee and tea and information. We have used the term volunteer in the manuscript, to avoid confusion.

21. Lines 30-31, page 11 – could the authors please elaborate on this finding by explaining why some people did not perceive it necessary (or ideal) to have specific peer groups for people impacted by incurable cancer?

Response: Thank you for your remark. Participants did not elaborate a lot about the specific benefits of a mixed group (curable and incurable cancer). However, this is an important nuance to the results, as not all patients expressed the need for a specific peer group as they believe it is only about end of life, and they expressed find benefits of peer support in general, see also Themes Sharing stories and experiencing recognition and a warm place with requirements.

22. Line 21-23, page 12 – “Participants indicated that their environment sometimes draws the wrong conclusions when they talk about how they are doing, which they find frustrating” – I am a little unsure what is meant by this. Could the authors please clarify (or perhaps include an example)?

Response: We have added extra information to this section, see page 13 “In addition, participants indicated that their environment sometimes misinterprets them when they talk about how they are doing. Participants express to find this frustrating.”.

23. Line 8-9, page 13 – the second use of the word ‘practical[ly]’ is somewhat redundant in this sentence.

Response: We agree with the reviewer and have removed this word, see page 14.

24. I think it would be worthwhile including a quote to illustrate the theme of ‘a need for information’ specifically one that highlights the need for disease-specific and/or practical information.

Response: Thank you for this comment. We have added some examples of need for information to the text and included a quote. This quote underlines the phase-specific information needs in general, see page 14

25. Lines 10-11, page 14 – avoid using contraction words – e.g., ‘didn’t’.

Response: Thank you for your feedback, we have altered the contraction words.

Discussion and conclusion:

26. Overall, the authors have raised some important points regarding the suitability and value of supportive care services, such as those offered at IPSO centres, for people impacted by incurable cancer, that emerged from their findings. I recommend that the authors elaborate further on their findings regarding peer groups that are exclusive to people diagnosed with incurable cancer or to bereaved relatives. Given that not all participants supported this approach, further discussion of the perceived advantages and disadvantages would strengthen the interpretation of these findings. I also recommend that the authors compare their findings to previous research conducted with IPSO visitors, to demonstrate the novelty and uniqueness of their findings for people impacted by incurable cancer.

Response: Thank you for this feedback. We have altered the discussion accordingly and believe that the urgency of the need for exclusive peer groups for patients with incurable cancer is better integrated into the Discussion section. See page 16-17 “The participants also reported the added value of dedicated peer groups for patients or relatives facing incurable cancer, as they felt able to talk openly about end of life and experienced a deeper sense of understanding and connection. However, the volatility and unpredictability of the disease makes that they cannot always visit IPSO when they have a need to and hampers the practical aspects of organizing dedicated peer groups.”

27. Line 25, page 15 – please check the punctuation here. There is an inverted comma at the beginning of a sentence.

Response: Thank you, we have altered it accordingly.

28. Line 30, page 15 – remove ‘that’.

Response: That has been removed for this sentence.

29. For improved flow, I would suggest including the ‘Implications and further research’ section above ‘Strengths and limitations’

Response: Thank you for this suggestion, we have added a paragraph on the implications and future research to the Discussion section, see page 16-17: “Implications and future res

Attachment

Submitted filename: Response to reviewers.docx

pone.0339703.s005.docx^{(3.8MB, docx)}

PLoS One. doi: 10.1371/journal.pone.0339703.r003

Decision Letter 1

Alexandre Nunes

10 Dec 2025

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

PONE-D-25-30108R1

Dear Dr. Natasja Raijmakers

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Additional Editor Comments (optional):

Reviewers' comments:

Reviewer's Responses to Questions

Comments to the Author

Reviewer #2: All comments have been addressed

Reviewer #3: All comments have been addressed

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2. Is the manuscript technically sound, and do the data support the conclusions??>

Reviewer #2: Yes

Reviewer #3: Yes

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Reviewer #3: No

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Reviewer #2: No

Reviewer #3: Yes

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Reviewer #2: Yes

Reviewer #3: Yes

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Reviewer #2: Thank you for addressing my previous comments and congratulations on this paper which I feel addresses an important gap in the literature.

Reviewer #3: The paper presents an interesting and relevant topic. The paper examines the experiences and needs of visitors of IPSO centers (psychosocial support centers for living with and after cancer) for people facing incurable cancer, with the aim of optimizing the services provided by IPSO centers for this group. However, it suffers from several drawbacks that need to be addressed before possible acceptance.

The abstract needs to be rewritten, especially to clarify the methods (one sentence instead of two).

I reviewed the authors’ responses to the editors and compared them with the previous version, and I conclude that the authors carefully implemented all suggested revisions. The previous reviewer was quite demanding, so I believe the article is now in a good position to be accepted.

My only negative point is that the conclusion is very short.

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Reviewer #2: Yes: Emma Kemp

Reviewer #3: Yes: Andreia Matos

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PLoS One. doi: 10.1371/journal.pone.0339703.r004

Acceptance letter

Alexandre Nunes

PONE-D-25-30108R1

PLOS One

Dear Dr. Raijmakers,

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

S1 File. This is the COREQ checklist.

(DOCX)

pone.0339703.s001.docx^{(29.7KB, docx)}

S2 File. This is the interview guide.

(DOCX)

pone.0339703.s002.docx^{(48.7KB, docx)}

Attachment

Submitted filename: PONE-D-25-30108_Review comments_20250814.docx

pone.0339703.s003.docx^{(17.6KB, docx)}

Attachment

Submitted filename: Response to reviewers.docx

pone.0339703.s005.docx^{(3.8MB, docx)}

Data Availability Statement

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PERMALINK

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 Siemelink

Julia van Koeveringe

Monique Bussmann

Saskia van Veen

Sandrina Sangers

Natasja JH Raijmakers

Roles

Abstract

Purpose

Method

Results

Conclusion

Introduction

Method

Study design

Participants and setting

Data collection

Data analysis

Results

Table 1. Sociodemographic characteristics of visitors facing incurable cancer of IPSO centers.

Table 2. Overview categories, themes and subthemes.

Experiences of visitors facing incurable cancer with IPSO centers

Sharing stories and experiencing recognition

A warm place without requirements

Feeling out of place among peers who are not facing incurable cancer

Special peer groups with people facing incurable cancer

Needs of visitors facing incurable cancer

A need for understanding

A need for information

Finding ways to fill the day

A need to visit while not being able to

Discussion

Main results

Implications and further research

Strengths and limitations

Conclusion

Supporting information

Acknowledgments

Data Availability

Funding Statement

References

Decision Letter 0

Gursharan Singh

Roles

Author response to Decision Letter 1

Decision Letter 1

Alexandre Nunes

Roles

Acceptance letter

Alexandre Nunes

Roles

Associated Data

Supplementary Materials

Data Availability Statement

ACTIONS

PERMALINK

RESOURCES

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