ResultsTop

Sample size and characteristics
We identified ten relevant voluntary organizations. Included organizations were either charities, local drop-in centres, or national patient associations with local members. One organization focused on providing practical or financial assistance to people with cancer. The organizations’ ages varied from five to forty years.

Members of three organizations took part in the one-to-one semi-structured interviews. Two participants were directors, who received a small payment for their work. One participant was the founder of his organization and worked on a voluntary basis. The three interviews lasted for 45 minutes, one hour, and one hour and 50 minutes.

All ten organizations were invited to participate in an FGD. Two organizations were unable to allocate time to participate. We split the remaining eight organizations over two FGDs. Three organizations cancelled their participation at the last minute, and were unable to provide replacement colleagues. Five organizations participated in our FGDs, with a total of seven participants, four in the first FGD and three in the second FGD. All FGD participants were volunteers within their organizations. Their mean age was 60 years (range 49-77), five were male and two were female. Participants had either finished Masters degrees, or completed degrees at universities of applied sciences. All participants had at some time been diagnosed with cancer, but were cancer-free at the time of the FGDs. Both FGDs lasted for one hour and 50 minutes. Member checking after the analysis supported the findings of the study.

FGD participant interaction
None of the FGD participants knew each other beforehand. The relatively small numbers of participants resulted in more in-depth answers. Group dynamics were characterized by feelings of solidarity. Participants listened attentively to each other, contributed actively in discussions, and made each other think more critically, resulting in considerable interaction. Many ideas, tips and strategies were shared. It was notable that, at the end of the FGDs, all participants shared their contact information.

Categories
The coding process yielded five categories: (1) objectives of the participating voluntary organizations, (2) patients’ and healthcare professionals’ familiarity with the existence of the voluntary organizations and their reach, (3) challenges recruiting volunteers, (4) messages to healthcare providers, and (5) eagerness to collaborate. Each category is described below, with participant quotations identified by participant (PCP) number, and FGD or interview number.

Objectives of the participating voluntary organizations
Defined objectives varied from providing information, bringing cancer patients into contact with each other through peer support groups, improving the quality of care, preventing dismissal from work, supporting rehabilitation, providing practical or financial assistance, creating awareness, social understanding and improving aftercare, to providing simple psychological support. All organizations shared the objective of improving the quality of life of patients with cancer:
You see guests bloom again, they get positive energy to fully feel alive again, to mostly look ahead, and that’s what we stand for as well of course, and also to improve that quality of life (Interview 2).

Participants felt it was important to recognize that they could offer psychological support, for example by offering an experienced volunteer who carefully listens to the patient’s story and sympathizes with him/her:
What we also absolutely need to keep in mind: there’s a whole lot between a justified indication to get psychosocial support in a professional way and nothing at all (PCP6, FG2).

Information events were reported to be well organized and attended. Sometimes cancer peer support groups were well attended, sometimes not at all. Participants were particularly proud of the quality and comprehensiveness of information that they provided, in print and especially on their websites:
There’s a fantastic website! Where they can find genuinely everything (PCP2, FG1).

Several voluntary organizations worked with quality assessments for hospitals. They believed this was appreciated by patients, while resulting in improvement of healthcare regarding oncology:
The quality label worked very well, because in the beginning maybe only half of the participating hospitals met the criteria, however in the end every hospital met the criteria (PCP2, FG1).

Participants perceived that there were barriers to patient use of drop-in centres, for example the distance to or location of a drop-in centre, or unfulfilled expectations, even though they tried to reduce these:
So, even though we want to be approachable, we aren’t always (Interview 1).

Patients’ and healthcare professionals’ familiarity with the existence of voluntary organizations and their reach
Familiarity with the existence of voluntary organizations amongst patients was variable. Participants reported that it was hard to make contact with medical specialists to give them information about their voluntary organizations, or to ask them for help. While most medical specialists were aware of voluntary organizations, they often lacked time to discuss this with patients, and did not consider it to be their priority:
“Time is money”. Those specialists have a very busy schedule. (…) Then there’s not enough time to discuss everything (PCP6, FG2).

Recently “case managers” (specialized nurses) had been employed in hospitals, and they were able to help in giving information about the voluntary organizations:
More and more case managers are employed in hospitals. (…) And those are often the people that compensate for the cases the specialist didn’t or couldn’t discuss. And if this works out, they’ve made a good move, because that’s in fact someone who will guide you as a cancer patient through the entire process (PCP6, FG2).

The importance of increasing familiarity of voluntary organizations amongst home care workers, district nurses and general practitioners (GPs) was also emphasized. As they visited patients at their homes, they had a better perception of what sort of help was needed:
Home care workers and district nurses, who really visit patients at their homes, who can really see: hey, that’s for example an isolated person that doesn’t know who to approach. Home care workers see the problems, and could ask us to help out. (…) And also with a GP that visits patients at their homes (PCP5, FG2).

Each organization had its own website and actively used social media, though this had the disadvantage of reducing personal interaction with patients or their loved ones:
I think that social media is a gigantic big force on one hand, but on the other hand it’s also a really big barrier. Because especially social media can inform people quickly about a subject and they don’t have to leave their house to go to a theme evening, because they can already find it immediately on their mobile phone (PCP5, FG2).

Participants recognized that requests for help often came from loved ones, which made it important to raise awareness of their work with that group as well as with patients. To reach the entire intended target group was challenging:
So, I just want to say that it also doesn’t reach a lot of men, even while we’re doing the best we can by any means to increase the familiarity with our organization (PCP7, FG2). Look, you can expect people to ask a question, but they should know they can ask a question to begin with, and if yes, which question (PCP6, FG2).

Challenges recruiting volunteers
Voluntary organizations encountered difficulties in recruiting volunteers:
However, we also encounter the fact that getting new members is less and less easy and especially volunteers; active members. It’s very hard, our province in particular (PCP2, FG1).

One participant stated that subdividing the organization over regions, each with an individual representative, worked very well as it gave a clear task division for the volunteers. It was also found useful to have contacts with professors or oncologists who assisted in further professionalizing and recruiting volunteers. One participant advised asking a friendly doctor for assistance in recruiting volunteers:
Yes, can I immediately give a tip (…) I looked back on how I became a volunteer at the organization. And that was because I was asked by a medical specialist. (…) If you go back, via a befriended doctor in a hospital you know and ask: “Don’t you know a patient that’s ready to become a volunteer at this patient organization” (PCP1, FG1).

Reaching adolescents was a shared challenge. To be able to do this, organizations needed younger volunteers, but these were particularly hard to recruit:
If we, as an organization, want to reach those adolescents, we have to make sure we have an adolescent volunteer, because that person knows how the target group thinks and works (PCP1, FG1).

Most volunteers had experienced cancer in a relative or themselves. Some voluntary organizations offered training. While the quality of volunteers varied as they reflected the entire population, most volunteers were motivated, passionate and committed:
I’m not talking about the engagement and how driven they are; I can feel that from every volunteer. They all want to do it right in their own way (PCP1, FG1).
It’s a reflection of the entire society. However, they do share the common characteristic that they’re very passionate once they become a volunteer. Moreover, once they volunteer they’re motivated, they’re committed and they’re often people who have work experience, who are used to perform well. So, yeah, they’re very, very good, in general (PCP2, FG1).

For some, volunteering helped them reintegrate into society after recovering from cancer:
One of the volunteers was affected by cancer; very much, I have to say. For her it’s a huge outlet to be engaged in this work. So, yes, once again, it works both ways. We’ve been helped and she has been helped as well (PCP5, FG2).

Messages to healthcare providers
Participants felt that doctors should share decision-making with their patients, look beyond their disease, and take their patients’ life and work situation into account:
Well, I should say: look beyond the disease. Look at the position of the patient that is sitting in front of you. What about his or her life And take this into account. This already plays a role in shared decision-making for example (PCP2, FG1).

They also felt that there was a need for discussions about the need for psychosocial assistance earlier in patients’ disease processes. To assist with this, one voluntary organization visited hospitals to discuss their approach to referring patients needing psychosocial support:
And what we then do in hospitals, is discuss: “To whom do you transfer this patient Do you sufficiently inform the GP Are there any other assistants who can help this patient to fill that gap” (PCP2, FG1).

Doctors were perceived as being skilled in treating patients and providing practical support, but not in providing or referring for psychosocial support:
Also from the experience that the doctors’ awareness often does cover practical support, however does not cover psychosocial support so much (PCP7, FG2).

Eagerness to collaborate
Collaborations between voluntary organizations and hospitals already existed. Voluntary organizations were part of a variety of networks and partnerships:
We organize various projects in collaboration with care partners. (…) We’re affiliated with different networks (Interview 2).

Nevertheless, most participants were not even familiar with the names of each other’s voluntary organizations, and they felt that there was room for improvement:
Also the contact with other foundations or organizations, yes, that could be way, way better (Interview 3).

Many tips and pieces of advice were shared during the FGDs, and new ideas about collaborating arose. Participants suggested, for example, providing workshops at each other’s events, organizing theme evenings, sharing announcements on Facebook, informing each other of opportunities or interesting events, and lowering the barriers for cross-referral of patients.

Participants valued the FGD encounter and planned to take advantage of each other’s expertise:
Collaboration, learning from each other, to make the most out of it for each other and for the people we’re doing it for. (…) You need each other and that’s the power of meetings like these. (…) Well I think we concretely have to look with each other what we can actually do for each other. I will give you our folder, I’ll give you my business card and we’ll see what we can do for each other (PCP6, FG2).

DiscussionTop

Main findings
Our research questions were exploratory and not tied to formal hypothesis testing [18]. Participants gave us insight into their experiences and the functioning of their voluntary organizations. Voluntary organizations have a shared aim of improving the quality of life of patients with cancer. They can provide psychosocial support, and they are proud of the quality of the information that they provide on their websites and during planned events. Particular challenges include attracting patients to use their drop-in centres, and difficulty in recruiting volunteers, particularly younger ones. They find that the volunteers who work for them are passionate and committed, and have usually experienced cancer in a relative or themselves. Medical specialists are usually aware of the existence of the voluntary organizations, though lack of time to discuss this with patients. Most participating organizations are not familiar with each other’s efforts, but FGD participants become keen to collaborate.

Strengths and weaknesses
This is the first qualitative study to explore the experiences of voluntary organizations themselves that support people with cancer and their loved ones in the Netherlands, offering a unique insight into their successes and challenges. We achieved methodological and investigator triangulation and performed a member check.

While the focus groups were small, this gave participants more time to voice their views and give more detailed information. However, a larger group might have generated greater variety of information [19]. Due to the short timescale for the study, it was not possible to arrange more interviews or FGDs, and data saturation was not achieved. While we sampled representatives of these organizations, neither their volunteers, nor clinicians or patients, were included in the study. This study took place in a single region, and we do not know the extent to which our findings are applicable elsewhere.

Comparison with existing literature
While we did not find comparable studies that reported the experiences of representatives of organizations that provide psychosocial support to patients with cancer and their loved ones, we did find studies that investigated effects of drop-in centres in the Netherlands. One study showed that 96% of respondents (patients or relatives that visited one of the many drop-in centres) experienced a positive effect in at least one health domain and 89% in at least three domains [13], which maps across to our finding that cancer voluntary organizations aim to improve patients’ quality of life. All the participants in our study had at some time been diagnosed with cancer, and this may go some way to explaining the success of these organizations, as research shows that patients want to know where they can go to share their experiences with others who have had similar experiences [20]; to get in touch with peers and feel heard have been found to be the most important reasons to visit a drop-in centre [21]. Our participants’ wish to increase familiarity of voluntary organizations amongst healthcare professionals fits with a study which found that patients would like to be referred by the latter more often [21].

Studies have shown that almost a third of patients with cancer have an unmet need for psychosocial support [22, 23], which suggests that our voluntary organizations’ prioritization of offering psychological support is valuable. Another study found that oncologists perceive that there are barriers in communicating about psychosocial issues with patients [24], which may link with our finding that specialists did not consider giving information about voluntary organizations to be a priority. Patients also experience barriers to using support services, particularly lack of awareness of those services, and lack of provider referral [25, 26].

Future research
Research is necessary to investigate the attitude of clinicians regarding their feelings towards cancer voluntary organizations, in particular to find out their views on recommending the use of these organizations. A study in the Netherlands showed that partners of cancer patients consult their GPs 6-24 months after diagnosis significantly more often with both somatic and psychosocial problems [27], which emphasizes the importance of also including the views of loved ones in future research. There is also a need to identify ways to increase patients’ and relatives’ use of existing services. Another area of study would be to focus on the interactions between representatives of these organizations, volunteers, clinicians, as well as patients and their loved ones. Matching their perspectives and recommendations about these services would provide empirical evidence for knowledge of, and the actual use of, cancer support organizations.

ConclusionTop

This study identified experiences of voluntary organizations that support people with cancer and their loved ones in South Limburg. These organizations share a prime objective of reducing the impact of cancer on the personal life of patients and their relatives. However, awareness of what they can offer is suboptimal amongst both patients and their clinicians. There is scope for collaboration between these voluntary organizations, and study participants became keen for this to happen; this would allow these organizations to share ideas and increase their expertise by learning from each other. Future research combining the perspectives and recommendations of representatives of these organizations, volunteers, clinicians, patients and their loved ones could help in finding more efficient ways to optimize the use of cancer voluntary organizations.

Acknowledgments
We would like to thank the following individuals for their contributions in this study: Henk Goettsch, Yvonne Koolen, Roel Sillen and all participants.

Conflicts of interest
The authors declare that they have no conflicts of interest.

Availability of data and material
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

Author contributions
BL, G-JD and RN contributed to the study conception and design. Data collection and analysis were performed by BL. The first draft of the manuscript was written by BL. G-JD commented on all versions of the manuscript. MH contributed to the data analysis and writing the manuscript.