Table 5.
Analytical themes, descriptive themes and illustrative extracts.
Analytical theme | Descriptive themes | Illustrative extracts |
---|---|---|
Daily impact of HT side effects | Social functioning | “I started to withdraw from social situations. I didn't trust my body to co-operate. I missed out on quite a few things, because I was too afraid that [due to the diarrhoea] I would have to run or, change my clothes or have a shower. And make a mess in public. Emotionally, it was devastating” (Lambert et al., 2018; p.5) “It just stops you getting on with your life. You have been through surgery, then chemotherapy, then you take the hormone drugs. You get to the stage when you want to get back to normal, but these drugs stop you doing that” (Brett et al., 2018; p.296) |
Inter-personal relationships | “One of the things that upset me most at the time [was that] I lost all interest in sex overnight – it didn't help my husband as you can imagine.” (Brett et al., 2018; p.294) “And I have two, three grandchildren. I love children …. So, when I see them, I want to play with them … but physically I can't do it. So, that makes me—really upsets me. I think that's the thing.” (Brauer et al., 2016; p.995)“Well your friends and relatives don't want to hear about it [symptoms].” (Van Londen et al., 2014; p.5) | |
Ability to work | “I am more forgetful. I work harder at work to do the same job that I used to just do. It's harder for me to stay focused, to concentrate, to think clearly, to remember everything.” (van Londen et al., 2014; p.5) “I am unable to undertake too heavy/many physical tasks. I should perform light work only. For example, I easily feel tired when cooking. I have to take a break and lie down on the bed for 15 min. After boosting my energy, I get up and continue to cook.” (Cheng et al., 2017; p.1043) | |
Physical health | “There are days that all of you is in pain, all the body …. A pain that you don't know what is hurting …. and it is so horrible … you try to be still so it doesn't hurt. You can't cook, you can't clean, you can't even bathe because … the pain is in all your body.” (Wells et al., 2016; p.7) “I felt like a 90-year-old woman.” (Bluethmann et al., 2017; p.6) | |
Mental Wellbeing | “I just don't feel exactly like myself [on Arimidex®]. I don't feel real clear-headed, and I feel groggy a lot of the time. If you're not sleeping well, you don't know if one thing causes the other.” (Bluethmann et al., 2017; p.6) “I felt so low, was having suicidal thoughts, really didn't feel like myself at all, I was in so much pain and that I'd made the decision that I was going to come off tamoxifen.” (Moon et al., 2017; p.18) | |
Role of Health Care Professionals | Unprepared for side effects | “I didn't even know my body was going to go through that. It hit me like a boom” (Bluethmann et al., 2017; p.5) “My doctor told me I would probably have night sweats and hot flashes, but that's all I really expected. I didn't expect the [severe side effects] I had. … It started with pain in my shoulders, and then it moved to my jaw. Eventually, it moved to every joint in my body.” (Bluethmann et al., 2017; p.5) “I would have liked more information to prepare for the side effects. I was given lots of information about the side effects of chemotherapy and how to manage them, but I wasn't expecting the side effects of HT. So perhaps that made it worse” (Brett et al., 2018; p.293) |
Feeling unsupported by HCP | “You feel like you don't have all the structures we talked about before [when undergoing chem/radiotherapy], so now [on hormone therapy]you're winging it, and that's scary” (Braeur et al., 2016; p.993) “This is the one thing that I do find a lot of women struggling most with, that they feel so … they're just not listened to. They're not being validated in what they're experiencing.” (Moon et al., 2017; p.22) “I would rather have somebody tell me that they don't know why I had a reaction to this or that, rather than just make me feel like I'm a child or it's just your hormones or it's just your mental incapacity” (van Londen et al., 2014; p.6) “I wanted to be followed up. If they're going to start fiddling with your hormone levels, they should be checking you every three months. There's no checks and balances. If I had felt I was being followed and people knew what was happening to me, I would have felt much better. I felt totally alone” (Lambert et al., 2018; p.8) | |
HCP's influence on adherence | “I said ‘I've decided to stop [taking hormone therapy], what do you think?’ And she [oncologist] shrugs and said ‘Fine’. If she had said ‘No, definitely not, I really don't think you should stop’, I probably wouldn't have” (Lambert et al., 2018; p.7) I had a long conversation with him [GP] about it – he really cared. He swapped me on to this one – I know he is doing what he can. If you feel someone cares, it kind of encourages you to keep going, if you know what I mean. [P18 adherer] (Brett et al., 2018; p.293) | |
Managing HT side effects | Non-adherence in order to reduce side effects | “I was walking with crutches and canes for support, but after I stopped taking the tamoxifen, the pain subsided.” (Bluethmann et al., 2017; p.7) “… the hot flashes. I would wake up during the night and be drenched. I skipped one month [of ADJUVANT HORMONE THERAPY].” (Humphries et al., 2018; p.8) |
Self-help strategies | “I read on the internet about looking after myself […] I eat much healthier now, and avoid alcohol and caffeine. A bit boring, but it helps. The side effects are less now” (Brett et al., 2018; p.293) “Very often I get home (from an appointment) and I realize that I don't have the full picture, and so then I go to the Internet.” (Pieters et al., 2019; p.9) “I mentioned it to [my doctor], but I knew it was just one of those things I would have to cope with, so I just did.” (Bluethmann et al., 2017; p.6) | |
Social support | “I realize, hey, I'm not the only one that's going through this. Other people are going through this too … We're a community.” (Pieters et al., 2019; p.9) “You can be totally blunt with him. And he just really wants to help do what's best for you, but he listens to your issues. He doesn't minimize how you're feeling” (Bedi, 2018; p.80) | |
Weighing up the pros and cons | Accepting risk of cancer recurrence | “I've had tamoxifen, and I've had breast cancer. I would rather have breast cancer.” (Bluethmann et al., 2017; p.7)” “You're counting the days and it becomes like you can't wait for the end [of ADJUVANT HORMONE THERAPY]. I don't know what's going to happen. It may come back and I'm going to die anyway. So, I'd rather have a good quality of life while I'm alive and not have side effects” (Lambert et al., 2018; p.8) “I called my doctor and told her I was going to stop taking Femara, that it was affecting me adversely, and that my quality of life was more important.” (Bluethmann et al., 2017; p.6) |
Fear of cancer recurrence | “The advantage they told me, was that it could save me. […] I saw this as prevention against a recurrence.” (Humphries et al., 2014; p.6) “If it was for anything else other than the cancer I would have stopped it, there's no questions, but because the cancer is such a big thing, you know the possible return of it, that's the only reason I'm struggling with it” (Moon et al., 2017; p.20) “I will carry on despite how I feel just because it's the only thing I can do and I'll do anything I can [to stop the cancer returning] because of the kids really – I do want to be around [for them” (Brett et al., 2018; p.294) |