Electronic Supplementary Data
Barriers to using psycho-oncology services: A qualitative research on the perspectives of users, their relatives, non-users, physicians and nurses
Journal name: Supportive Care in Cancer
Melanie Neumann*, Maren Galushko, Ute Karbach, Hadass Goldblatt. Adriaan Visser, Markus Wirtz, Nicole Ernstmann, Oliver Ommen, Holger Pfaff
*Corresponding author:
Dr. Melanie Neumann
Center for Health Services Research Cologne (ZVFK)
Medical Department of the University of Cologne
Eupener Strasse 129
50933 Cologne, Germany
Tel 0049 (0) 221 478 97102
Fax 0049 (0) 221 478 97118
E-Mail:
Table I:Patients' and physicians' information deficits about POI and POS
Patients
/ Participant,gender
Many also don’t find the way there; they’re unsure about going there on their own. It’s often older patients. Well okay, we have patients ranging in age from 30 to 80. And the older patients are simply unsure about going by themselves too. [b1]Many older patients can hardly go anywhere alone. / Physician,
female
Yes, money has been mentioned occasionally and someone then says, yeah, I don’t even know if it costs anything. / Physician,
female
You really have to have a look, you have to use the brochures and take a look out there to see who your contact person is, to get hold of someone on the phone, you know. / Non-user,
female
Well, I would want ‘The POI’[1] to have a stronger presence, so that practically everybody knows that it’s there. ..., and so that people don’t just find out about it by word of mouth, “oh yeah, and there’s this ‘POI,’” ... And I think that, in the future, it would be important for them to improve public relations from how it's been up to now. / Physician,
male
It was three weeks before I even heard anything about it. / Non-user,
male
I didn’t think the initial information was very good. ... It wasn't quite enough for someone new. / User,
female
Well, I would say that what they offer seems somewhat threatening, because they don’t necessarily know what this ‘POI’ is. / Physician,
male
Maybe I didn't find out anything about it before because I was so wrapped up in my own issues. / Non-user,
male
Yes, I would also say that the term psycho-oncology is used more among experts and not among patients themselves. Many have already heard about it at some point, but then when somebody mentions it, they’re often completely taken aback because they can hardly relate to it in the first place. / Nurse,
female
Physicians
... otherwise, of course, it’s pretty much unfamiliar to those in the affiliated clinic, and I say that, well, as a doctor, it doesn’t even occur to you. / Physician,male
Okay,[b2] so now let me ask you [moderator] a question. I also don’t know, are you quote-unquote in charge of the university clinic or … who can come to you the POI? / Physician,
female
... so that patients find out more about it, so that the nursing staff and physicians too, that is, those who are just starting out[b3], should also know what the POI is. / Physician,
female
My gynecologist had once heard something about there being something at the university. / User,
female
... but also colleagues, of course, everybody that works here has heard about ‘The POI’ at some point, but what it is exactly... That’s also too abstract. / Physician,
female
... so that psycho-oncology, and the term is just difficult because it’s a word that’s not used everyday, not even in the clinic. / Physician,
male
With psycho-oncology, the only thing that comes to my mind is a trained psychologist that has 20 years of experience working with oncology patients. That’s the most extensive association that I can make with the term, ... / Physician,
male
... but something more in the way of occupational therapy, yes, I have always enjoyed painting ... oh yeah, and I like singing, … / Physician,
male
... what is also not quite clear to me right now is how ‘The POI’ actually defines itself. Whether it’s really psycho-oncology care or even something much broader, like occupational therapy. As far as I’m concerned, it could also be social counseling or setting up former patient reunions or making contacts. / Physician,
male
Table II: Patients' and physicians' subjective norms regarding POS
Patients
/ Participant,gender
… it was great, they had a breakfast room. ... Whoever wanted to could choose to sit in there, talk to others a bit, but could also just take breakfast into their room and eat it there. And it was great, it was really great. ... Yeah, a community somewhere; in principle, each person can pick out what he or she wants … / Non-user,
female
… where kitchen you could make your own salad or warm up a meal later on; we’ve often envisioned something like that ... That way, they get out of their rooms once in a while, get a chance to converse with others ... living in a community can also give people an appetite. / User, male
And they can be completely different from what you learned before, such as painting therapy, which could include an evaluation ... cooking was an example of this, ... well, I’ve come across patients that have gotten together against the rules in the clinic kitchen in the evening to cook together, Spaghetti Bolognese ... and they were doing quite well, they were really having a lot of fun, that was at the very beginning, before the days of psycho-oncology services. / Physician,
male
Having fun and doing things together, things that family members can also be involved in, that should be the main focus and not the disease ... The disease is a part of me, but it shouldn’t become the center of my life. At “The POI,” it should also be about the many healthy parts of me, so that I can carry on with my life as normally as possible. / Non-user,
female
I’m not going to let that pull me down. By the same token, I wouldn’t act selfish if, for example, the person in the next bed ... doesn’t really accept her fate; and there should be something like that and that’s okay too, but that’s something that I, for example, wouldn’t need. Because then, my whole world would start to become unsteady, and I don’t want that. And then I would probably also request to be moved somewhere else. / Non-user,
female
... and sometimes I also just find it very difficult, always being around people with the disease; I don’t know if that’s really good for somebody, sometimes I don’t know. / Relative of user,
female
Well, in the case of my friend ... that at the beginning, she even had a sort of fear of contact. Because she had told herself that if she were to go there, she’d probably have to deal with many difficult cases that would make her even more scared, so that at first, she wasn’t too crazy about actually doing anything there. / Nurse,
female
Happiness, having fun, and being in touch with my own body are what’s important to me ... I don’t want everything to always be looked at therapeutically and verbalized. / Non-user,
female
‘The POI’ should not only be a place of sorrow; it should also be a place where the healthy parts of me can be seen … For me, it’s really an obstacle when the therapeutic view determines everything. / Non-user,
female
... but from my own experience, when I say, “you could always stop by there”, and many are ambulatory, then they tend to go even less. They tend to sort of isolate themselves. Those are often cases of fear of the unknown. / Physician,
female
Yes, of course, there are many who ask: who is that? … who’s coming? And if nothing is readily available, I mean, they can always turn to a priest, and even if he or she is turned down, there are always psychologists, social workers, or something, many also have problems with that. And then, in general, there have been cases where I’ve heard, “they’re all just full of it, they can’t help me either”... / Physician,
female
... then I was forced to see the psychologist. / User,
male
The psychologist also came to see me once, but I don’t need such conversations. / Non-user,
male
Before, I always thought that psychologists were very weird – now I’ve been cured by one… I was used to approaching problems rationally. / User,
male
... then they sent the psychologist because they said that I was depressive. I spoke to her twice and then did the art therapy, just so that she would leave me alone. / User,
male
Physicians
... I think that only patients with metastases, who are receiving chemotherapy, are considered ... / Physician,female
If it works out, I try to integrate it relatively early. [b4]In other words, for example, we currently have a 30-year-old patient with lymph node metastases, ... In such cases, that is, at the initial diagnosis, I rarely include it, ... / Physician,
female
Table III:Lack of integration of POI and POS into routine oncology care
Participant,gender
When I mention ‘The POI,’ everyone thinks it is a hospice. So, the term itself is associated with something negative, I’m just saying, there are times when you hear, “oh no, is it really that bad?“ and then I try to explain that it has nothing to do with that and that yes, it’s as if someone were to say :“Oh, is that it then? It's downhill all the way from now on?” / Nurse,
female
Sometimes, that’s also easier than if I go in and just make a big announcement because then the patient feels that he has to make a decision right then and there, and she [volunteer, psychologist with a room on the ward] just went right in and talked a bit. / Nurse,
female)
... so that the male patients, those who have heard about it somehow, then say that even if it is a nice building, architecturally and what not, “yeah, it’s just there for the sake of it, and it’s all just for someone who’s going to die, so they can still have something to do. I’ve seen something like that on TV, they can take these painting classes as a means of distraction.“ Often, they’ve just gotten that into their heads; I’ve heard that several times already. / Physician,
female
... they [physicians] also think that the patients don’t need that [the services offered by ‘The POI’] until later. / User,
female
... if it doesn’t work anymore, if you can no longer cope with it yourself, then I would suggest it. / Non-user,
female
Well, it’s like this, ‘The POI’ is already known for being a place, well, where the more life-threatening, ... where you don’t merely get help, but rather, the patients already know that something about their condition has really gotten worse if they need some kind of help or counseling, leading them to think that it’s only for patients who have metastases, who are getting chemotherapy … / Physician,
female
Yes, my primary goal is still to make psychological counseling on the ward accessible to oncology patients, ... I just find it extremely important, I think it should be a part of it, even at the time of the initial diagnosis / Physician,
male
Patients, who I would have never really expected to agree to such counseling, kept on going on a regular basis, and now, well I'm exaggerating a bit, but they just went crazy about the day when the volunteer psychologist with a room on the ward would come back again and when they could sit together in a circle again. There was also this mailbox at the back of her room, and she always had a sort of presence, and that’s also what it was all about. ... And then this comparison, or difference, occurred to me, and I’m not being judgmental here or anything, but that volunteer was very accepted when she was there. / Physician,
female
Just like the volunteer [psychologist with a room on the ward], but she also wasn’t obtrusive, she said, “Yes, here I am, I just wanted to introduce myself, so how’s it going,“... and she created such a private atmosphere. ... Maybe that’s because it was just one-on-one. …Well, such is the concrete perception. ‘The POI’... but that just seems like some kind of object. In a certain way, it’s not something within reach. With an actual person, then you can actually, yes, then you can say right away, she seems nice to me, there’s this warm feeling, I get this sense of trust – or maybe not. / Nurse,
female
I mean, I can go back to this idea of presence. This is something that can be seen in those who are healthy, whenever someone has to make himself do something. I know this even from my own personal experience; right now, it doesn’t matter what it is, even if it’s something positive, but if some sort of brochure is just lying there, then somehow there’s always this sense of distance. If, however, someone comes by, and I see a face and have this sense of personal presence, and there’s this sort of atmosphere and somehow a sense of warmth, then I’m a bit more willing, a bit more open, ... / Physician,
female
There is no place where you can always go that has a therapist who is always there. / User,
female
... would I like to, of course, I would like that if there were money for it; the first thing I would do would be to have psycho-oncology counseling services permanently available on the ward, that would be a dream come true. Who wouldn’t want that? / Physician,
male
Table IV:Specific characteristics of patients using POS
Participant,gender
Well, I would say, the patients that make use of them have the advantage ... they have the advantage of already being better able to work through their illness and of simply having a more positive medical outlook. / Physician,
female
Very often, you have to take the initiative to do things yourself; I thought that they would be there with you more if you weren’t doing well; I thought they’d pick up the phone. / User,
female
Let’s just say, it’s also the very same thing in private life, those who are more open or are simply socially inclined, that’s important, of course, ... / Physician,
female
They are mostly patients that are a bit more open-minded, but also those that have already come to terms with the disease, a bit. / Physician,
male
... that many patients benefit from them; whereas there is, of course, a selection to choose from, many don’t see any options for themselves, and those who do go are those who have had a positive attitude to it from the beginning; they also find that it's something nice … / Physician,
male
It took four weeks before I finally called them [The POI] because I was scared of having any kind of social contact with others. / User,
male
It just always depends on the patients’ personalities. / Physician,
female
... but then she said, “I’d like to take the first step;” she was just so very reticent. / Physician,
female
... there are those who take part in the courses, but they are mainly women. / Physician,
male
... then a few came, but really only sporadically, mostly women. / Physician,
female
Yes. Something like a cosmetics class, for example, or something like autogenic training. In general, this comes from women, but even then, rarely. In the end, there is a positive response to them. / Nurse,
female
1
[1] “The POI” replaces the name of the institution here, to ensure anonymity.
[b1]I know we don't need to shorten, but this sentence just seems repetitive. Can we take it out, if we add 'older patients' to the next sentence?
[b2]Don't understand the meaning of this quote.
[b3]Do you mean the nurses and physicians who are just starting out?
[b4]Should we take this sentence out here as well as in the article?