Introduction
Methods
Participants and recruitment procedures
Data collection and interview topics
Theme | Topics |
---|---|
Patients | |
Introductory questions | Living situation, job status, partner status, having children, relevant life events, description of period of cancer diagnosis and treatment |
Experiences with respect to sexual dysfunctions | - Pelvic floor functioning (miction, defecation, incontinence), lymphedema, fertility in relation to sexual functioning - Sexuality now and a year before diagnosis (using the Life History Calendar method) with respect to (sexual) partner, sexual functioning (i.e., desire/libido, lubrication, sexual intercourse and/or masturbation, pain or other complaints, orgasm), body image, intimacy, sexual satisfaction, and sexual distress - Impact of cervical cancer (treatment) on the relationship and the perception of the partner - Coping with (possible) sexual complaints - Communication about sexual issues between partners |
Experiences with information and care provision | - Received information and care - Initiator of the information and care provision - Experiences with the information and care provision - Personal and practical barriers of seeking information and professional help |
Healthcare needs and attitudes towards modes of intervention delivery and attitudes towards interventions targeting sexual dysfunctions | - Needs with respect to information and care provision - Attitudes towards partner involvement in information and care provision - Attitudes towards different forms of information and care provision (written information, online support, face-to-face consult with gynecologist, sexologist, nurse, or general practitioner)a
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Data analyses
Results
Participant characteristics
Number of participants (%) | Mean (SD) | ||
---|---|---|---|
Age patient (in years) | 47 (8) | ||
Age partner (in years) | 46 (8) | ||
Time since treatment (in years) | 6 (3) | ||
Having children | 19 (63) | ||
Having a partner | 26 (87) | ||
Male partner | 25 (96) | ||
Relationship duration in years | 13 (9) | ||
New relationship since treatment (patient)a
| 7 (27) | ||
New relationship since treatment (participating partner) | 4 (33) | ||
Educational level (patient) | Primary | 1 (3) | |
Secondary | 16 (53) | ||
Tertiary | 13 (43) | ||
FIGO ≤ stage IIA | 27 (90) | ||
Radiotherapy (RT) | 16 (53) | ||
Chemotherapy (CT) | 10 (33) | ||
Surgery | 27 (90) | ||
Menopause as a result of cancer treatmentb
| 7 (39) |
Theme or topic | Example quote | |
---|---|---|
Experiences with respect to sexual dysfunctions | ||
Fertility | 1 | Woman, partnered, 47 years—Maybe I can see it separately from all the medical things that have happened, but I cannot disentangle it from the impact on my femininity. Interviewer—What do you mean by that? Woman—Am I attractive? So, in that sense is has had an impact, but I think that this is especially a result of not having had children, and not so much a result of the surgery. I really had to explore: what for a woman am I? So, I don’t have children, what do I have? |
Urinary incontinence | 2 | Woman, partnered, 40 years—Sex is less spontaneous, because you always reckon with: well I have to make sure that my bladder is empty, I have to pee before. […] When I have intercourse, then I feel an urge to urinate or sometimes a false urge, because if I go to the toilet nothing comes. All these things, like take away the spontaneity. |
Body image | 3 | Woman, partnered, 47 years—Well, up to my breasts everything is fine. Everything between my breasts until my knees, that’s awful. I consider that sort of a block, and I just don’t want to see it or feel it. |
Loss of libido | 4 | Woman, partnered, 40 years—Yes, then I noticed that, also because of the lack of energy, I just don’t feel like it. I have been so busy all day, and for me… Yes, in that sense men and women are truly different. For men it’s pure relaxation, and for me it’s an effort. And after a busy day, it may sound stupid, but then I prefer to lie down on the couch. Yes, that is, that is very dull, but yes. |
5 | Partner (male), 53 years—It (referring to sexual activity) is absolutely not spontaneous any more. Opposite to former times that I saw her walking or sitting or that we took a bath together, and that I was suddenly very aroused. That is gone. Interviewer—That spontaneity is… Partner—That is gone. I still can get aroused, but I cannot act on it. So the arousal is gone, not completely of course, but not comparable with before. | |
Pain | 6 | Woman, partnered, 53 years—Since the treatment, it (referring to her sexual functioning) hasn’t been good. In that sense that I basically don’t want. That I am afraid of it, and in pain.[..] And then, I have sort of given up, like ‘forget it’, don’t feel like it anymore. Or maybe I do feel like it, but the door has sort of been closed, and probably it won’t open again. |
7 | Partner (male), 53 years—Sexually spoken, I’m not a very wild man. I am not into very harsh sex, on the contrary. But the male act, to penetrate, not like an idiot, but in a normal masculine manner, that is enjoyable for a man, at least for me. That has not been possible any more. Until now, it always has to be cautious, very cautious. Certain positions that we used to do and that we both enjoyed are hardly possible any more. She is always in pain. | |
Sexual distress | 8 | Woman, partnered, 47 years—For me it is very difficult to have sex. Interviewer—Yes, and by that you mean having intercourse? Woman—Yes, but touching is very difficult for me too, it is completely different. Well, comparable with urinating, it feels completely different. I have difficulty, because I cannot relax …, even thinking about sex or touching is difficult for me. I hardly want it. It is very difficult for me, as well as for my partner. |
Finding a new partner | 9 | Woman, single, 45 years—Really, to seek out for intercourse, that’s an anxiety. But also the, the insecurity on the side of the men. So, then I start thinking, when do I have to tell. Do I have to tell? How … yes, you cannot act like nothing happened, because you notice. I mean, of course it (referring to her vagina) is shortened and it doesn’t lubricate without help. So yes, something needs to happen or to be said. Dealing with that is too much hassle, so then I leave it. |
Partner’s sexual satisfaction | 10 | Partner, 53 years—After the disease I have not been sexually together with X as it used to be. Sexually, I have become lonelier, even when I am making love with her. I cannot get as close as I used to. |
Relationship functioning | 11 | Woman, partnered, 42 years—Well, it is simply not good, it’s not good for your relationship. I mean my partner and I have talked about it in broad, that it is simply unfortunate, very unfortunate. Because he did expect other things from his life compared to how it is now. And of course for me too. Physically, I am not bothered that we don’t have sex, but he needs that […].Our relation is under pressure. While we absolutely want to stay together, but we do experience a lot of pressure from this. |
Partner’s attitude towards sexual problems (patient and partner perspective) | 12 | Woman, partnered, 55 years—That I could talk about it (referring to sexuality), but also the sensitivity when it came to making love. That he was very careful, and asked: “Is this OK like this? If it’s not, please say so.” And I am quite expressive and able to say so. |
13 | Partner (male), 41 years—What I didn’t realize, is that apparently I was nagging and that it drove X (referring to partner) crazy sometimes. But if I don’t nag, then nothing happens, and that the status quo that we have now. I don’t want to make her unhappy by pressuring her [...] So, what we do is very classic. Sometimes, I look very obtrusively to another woman, and then she thinks: “He is in need”. That’s the balance we have. | |
Experiences with information and care provision | ||
Not focused on sexual functioning during treatment and recovery | 14 | Woman, partnered, 49 years—Well, you are sitting at a table with a doctor who is telling you about the surgery and its consequences. And of course it is being told, that it can have an impact on sexuality, that it can all become less sensitive or that sort of things. And you hear that, but at that moment you are absorbed with the operation and with the cancer. About sexuality, you think, we’ll see about that later. |
Routine questions about sexual functioning during follow-up | 15 | Woman, single, 45 years—Well in my case, they asked: “well how is it with your sexuality?” I said: “I am not sexually active, because I don’t have a partner”, and then that was it. So yes, there was an answer and that was written down, and that’s it. “I don’t have intercourse.” “OK” […]. But well, at that moment you don’t say: “But I would like to have sex, but I experience problems having it” or you know. So, there is perhaps a task, even it has been a while, to inquire more profoundly. Not only: “Do you have intercourse?” |
Psychosexual healthcare needs | ||
Need for practical advice | 16 | Woman, partnered, 53 years—If somebody would tell me that it is normal if it (referring to sexual intercourse) doesn’t feel pleasant. And that your can do certain things, and outlines a number of scenarios, like: “You just do absolutely nothing and leave it for a while. You’re not ready yet” or “You should now start to actively explore what else you can do to regain your pleasure in sexuality”. |
Need to be reassured that it is normal to have complaints | 17 | Woman, partnered, 49 years—Well that (referring to a website providing information about sexuality after CC) could take away the insecurity that I do experience as a result of the complaints. Like, well OK, I am not the only one and it’s normal, and there are things that I can do. |
Personal barriers | 18 | Woman, partnered, 53 years—Yes, it is a hurdle. Of course, anyhow it is something… It is a difficult topic. I find it a difficult topic. […]. Of course, it is easy to do nothing […], but I do realize that in that case I deny myself something -and not only myself- and that life could be much more fun. I do know that. But it’s easier to do nothing. |
Partner involvement | 19 | Woman, partnered, 42 years—If he had been present there (referring to a follow-up consultation with gynecologist discussing sexuality), and sexuality was problematic, then it is very difficult to raise that. Interviewer—So, actually you say that is more complicated having your partner present? Woman—Yes, in that case it is. |
Attitudes towards interventions targeting sexual dysfunctions | ||
Written information | 20 | Woman, partnered, 40 years—So yes a brochure, that seems to me like a very pleasant, demarcated form of information, without the … horrible stories. |
Starting with website, face to face for more complex or severe sexual concerns | 21 | Woman, partnered, 34 years—I think that I would start with looking it op on the Internet, because there is much available there and if I would not find it, then I would […], well OK, it’s not on the Internet, I am done with it. Then I would go for face-to-face contact with a well-informed professional. |
(Online) support groups | 22 | Partner (male), 33 years—Yes, those (referring to support groups) are low on my list. Because, yes, that might be very egoistic, but I’m not interested in hearing other people’s experiences. Because you experience it differently than I do. So, you may talk about it very negatively, while that might not at all be how I feel about it. I am not so into support groups. |
Face to face with gynecologist | 23 | Woman, partnered 42 years—Yes, because you already are at the gynecologist during follow-up. So, then you don’t have to make an appointment. Then it immediately becomes an issue, like: “Well, that bothers me, I am going to make an appointment, and I am going to the General Practitioner”. Then it becomes an issue on its own. While, at the gynecologist you can naturally raise it, while you’re there anyway. |
Face to face with sexologist | 24 | Woman, partnered, 36 years—And I think that it also depends on the nature of the problem. So, if it’s purely physical, I would be inclined to first see a gynecologist. And if I notice, well that relational aspects play a role, for instance we cannot talk about it or it remains being a problem, then I would go to a sexologist. |
Face to face with nurse | 25 | Woman, partnered, 53 years—With respect to nurses, I think: “Well, they would say something to comfort me.” And with the gynecologist, I would think: “Well, I might get some assistance”. Maybe, that’s the difference. |