Background
Methods
Design
Recruitment
Data collection
Survey
Interviews
Focus groups
Experts
Data analyses
Quantitative analysis
Qualitative analysis
Results
Quantitative analysis
Sample characteristics
Characteristics | Full sample (n = 240) n (%a) |
---|---|
Age (years)(mean, SD) | 54.91 (10.56) |
Gender | |
Female | 151 (62.9%) |
Education level | |
High level education | 117 (48.8%) |
Middle level education | 79 (32.9%) |
Lower level education | 38 (15.8%) |
No qualifications | 1 (0.4%) |
Self-reported cancer statusb | |
I have cancer | 83 (34.6%) |
I am currently undergoing treatment for cancer | 83 (34.6%) |
I have been treated for cancer in the past, but not anymore | 124 (51.7%) |
Cancer typec | |
Breast | 66 (27.5%) |
Lymphatic or leukaemia | 38 (15.8%) |
Bowel or colon | 30 (12.5%) |
Bladder or urinary tract | 19 (7.9%) |
Prostate | 16 (6.7%) |
Head and neck | 16 (6.7%) |
Rather not say | 1 (0.4%) |
Otherd | 68 (28.3%) |
Alcohol and tobacco use in survey sample
Variable | n (%a) N = 240 |
---|---|
Smoking status | |
Current smoker | 29 (12.1) |
Former smoker | 132 (55.0) |
Never smoker | 78 (32.5) |
Number of cigarettes per day | |
1–10 | 13 (44.8b) |
11–20 | 8 (27.6b) |
21 or more | 4 (13.8b) |
0, I smoke incidentally | 4 (13.8b) |
First cigarette, in minutes after waking up | |
Within 5 min | 3 (10.3b) |
6–30 min | 13 (44.8b) |
31–60 min | 7 (24.1b) |
More than 60 min | 6 (20.7b) |
Considering to quit smoking | |
Yes | 23 (79.3b) |
No | 6 (20.7b) |
Drinking status | |
Current drinker | 186 (77.5) |
Former drinker | 29 (12.1) |
Never drinker | 24 (10.0) |
Frequency of drinking | |
Never | 1 (0.5c) |
Once a month or less | 31 (16.7c) |
2 to 4 times a month | 55 (29.6c) |
2 to 3 times a week | 51 (27.4c) |
4 or more times a week | 48 (25.8c) |
Standard units on a drinking dayd | |
1 or 2 | 141 (75.8c) |
3 or 4 | 35 (18.8c) |
5 or 6 | 7 (3.8c) |
7 or more | 3 (1.6c) |
Considering to quit or moderate drinking | |
Yes | 27 (14.5c) |
No | 158 (84.9c) |
AM and SC in survey sample
Preferences for support
Qualitative analysis
Sample characteristics
Characteristics | Focus groups (N = 15) n | Interviews (N = 8) n |
---|---|---|
Gender | ||
Female | 5 | 5 |
Education level | ||
High level education | 11 | – |
Middle education | 3 | – |
Lower education | 1 | – |
Smoking status | ||
current smoker | 3 | 6 |
non-smokera | 3 | 0 |
former smoker | 9 | 2 |
missing | 0 | 0 |
Drinking status | ||
current drinker | 13 | 4 |
currently non drinker | 2 | 2 |
missing | 0 | 2 |
Type of cancer | ||
breast | 3 | 1 |
melanoma | 1 | 3 |
prostate | 3 | 0 |
non-Hodgkin | 3 | 0 |
otherb | 5 | 4 |
Cancer survivors’ perspectives on AM and SC
Identification as cancer survivors
“Having cancer has a great impact and affects many aspects of your life. Recognizing and understanding this is key in a lifestyle intervention.” [survey participant P81, colon cancer survivor, female, current drinker]
Notwithstanding this impact, many would not identify as ‘cancer survivors’, rather feeling better addressed by the terms: ‘people who have had cancer’ or ‘people with cancer’. They would most like to move on from that part of their lives, only identifying as a cancer survivor when a doctor’s appointment comes up:“You see, before that I could trust my body, sometimes I felt something, but I was convinced it would pass. But now whenever I feel something, I go: ‘Oh no, you don’t think it’s … ’ It’s a different type of life, really.” [focus group participant FS2A, non-Hodgkin cancer survivor, male, current smoker]
Furthermore, when asked about the differences between a lifestyle program for the general population and for cancer survivors, many responded surprised and stated there ‘should be no difference’. Survey responses showed that this partly reflects a fear of stigmatization and that being labelled as cancer survivors is seen as something undesirable.“There are many periods that cancer is not on my mind at all. But then an appointment date for a control or scan comes up and slowly I start to become aware of it.” [focus group participant FS1B, prostate cancer survivor, male, former smoker]
The reluctance to identify as cancer survivors combined with the view that SC and AM are important to all people, not just cancer survivors, translates into not actively seeking out programs specific to cancer survivors, but turning first towards general (health) programs. Websites specific to cancer survivors were feared to be too confronting and that they could also be at odds with the desire for a positive tone of voice, because of negative associations with cancer. However, cancer survivors were triggered when reading something about their specific type of cancer (e.g., breast cancer or colon cancer). Possible benefits of an intervention aimed at cancer survivors were also mentioned: information on how AM and SC influence cancer, a safe space to discuss issues with peers (e.g., smoking after lung cancer) or extra emotional support. The need for a cancer specific website seemed to depend on the time since diagnosis, a more recent diagnosis indicating a greater need:“You receive a stamp, the ‘cancer-stamp’, well you definitely don’t want that.” [interviewee C9, melanoma cancer survivor, female, former smoker, current drinker]
“If I would use a program, I would use the one for the general population, because for me much time has passed since [the diagnosis]. [ … ] the moment you get out of treatment or when you’re in the middle of it, there is still so much going on. You’re psychologically less stable, you experience many emotions, you have more physical complaints, apart from the withdrawal symptoms. [ … ] So I do think in that case it should be combined.” [focus group participant FA2B, Hodgkin cancer survivor, female, former smoker]
Differential beliefs about health consequences
Differential beliefs about enjoyment and relaxation
“[when asked about smoking] This is my buddy and it’s always there for me. To comfort me, or to keep me company, but it’s always there for me.” [interviewee C3, colon cancer survivor, female, current smoker]
Willingness to quit
Concerning alcohol use, only one participant reported trying to quit alcohol use and not succeeding, whereas for SC many failed attempts were reported. Generally, cancer survivors stated they would be able to quit their alcohol use easily if they were convinced of its detrimental effects. A doctor’s advice was valued highly in this regard; a doctor’s recommendation to quit drinking would make them consider moderation. Importantly, alcohol use was rarely addressed by healthcare professionals, in contrast to smoking, when cancer survivors would have expected and valued it. As only few participants were convinced of alcohol’s detrimental effects, or saw it as less harmful than other detrimental behaviours, alcohol use was mostly viewed as an important aspect of their lifestyle that they did not consider changing:“It doesn’t bother me anymore and I don’t feel the need to quit anymore. There are not that many fun things in my life anymore. [ … ] It’s a very useless motion, it’s nothing, but to me it means a lot.” [interviewee C3, colon cancer survivor, female, current smoker]
“I’m still in the middle of this whole cancer story, so how amazing is it that in the evening I get to sit back, grab a piece of cheese and a glass of port [alcoholic beverage]. Why would I want to moderate that. On the other hand, I do think that you should do anything you can to keep your body and condition in shape. [ … ] So I drink my glass of beer, but I also go to the gym. That’s how I keep life a little fun. [ … ].” [focus group participant FA2A, prostate cancer survivor, former smoker]
Autonomy is key
“It needs to come from within yourself, if you don’t have the willpower, then it’s never going to work.” [focus group participant FA2C, eye melanoma cancer survivor, male, former smoker]
It remained unclear how to achieve intrinsic motivation, but cancer survivors provided several insights. Experiencing short term benefits and seeing results of AM or SC increased intrinsic motivation. A crucial insight was that being convinced of the health benefits of AM and SC, although important, was not enough for intrinsic motivation, because bigger concerns might be at play (e.g., ways to destress) or other things might be valued more (e.g., enjoyment). Lastly, some kind of ‘momentum’ should be used; capitalizing on moments when someone is receptive of lifestyle behaviour change. Cancer survivors differed in opinion on whether intrinsic motivation is needed before engaging in digital programs and other types of support, or whether these support programs might help to increase intrinsic motivation in an ambivalent phase.“I would grant it myself, but that moment might come and then it would need to come from within me. Or it might not.” [interviewee C4, lung cancer survivor, current smoker]
Cancer survivors’ preferences regarding digital AM and SC support
Tone of voice
Some cancer survivors who use tobacco or alcohol had to deal with judgemental reactions from their social networks, as if they “had brought it on themselves”. This could result in feelings of guilt: “I start a small fight with myself and think: ‘well there you go again, you’re smoking again.’ You’re judging yourself, but then I also think: ‘well it’s really very nice.’” (interviewee, breast cancer survivor, female, current smoker and drinker). Therefore a non-condemning tone-of-voice is important. A difference was perceived in societal reactions to alcohol use and smoking. Alcohol use after cancer was seen as more acceptable, whereas smoking cancer survivors often felt directly judged when smoking. On the other hand, dependency on alcohol was seen as more severe than an addiction to cigarettes, which was considered more ‘normal’.“For me, it’s the approach. ‘Oh you managed to only have one [cigarette].’ Very much focused on your success, on your strength and not on judgement. Judgement is catastrophic for me, I will only smoke more.” [interviewee C4, lung cancer survivor, female, current smoker]
“There was this website, saying that it’s my fault that I got cancer. [ … ] I read about oesophageal cancer and the combination of alcohol and smoking, and I don’t know what else they dragged into it. Then I looked up some other cancer types that are not related to it, and well, then that means the whole world is living wrongly. I messaged them: ‘I am a cancer patient and you are saying that it’s my fault that I have cancer, and I object to that.’” [focus group participant FA1A, oesophageal cancer survivor, male, non-smoker]
Specific intervention components
Component | Preferences | Implementation considerations |
---|---|---|
Monitoring of alcohol or tobacco use | It is experienced as offering insight into drinking and smoking patterns. However, for some it could be too confronting, especially when goals of moderation or cessation are not met, leading people to not report drinking or smoking truthfully. | This emphasizes the need for an accepting, non-judgemental tone-of-voice throughout the program. |
Peer support | Some take great support from it and emphasize benefits such as a better understanding of the cancer experience and the possibility to talk in a light-hearted way about the cancer experience. Whereas others had experienced that forums often contain negative experiences or unverified information, invoking negative emotions and worries. | Cancer survivors suggest to incorporate peer support in a non-prominent way, offering cancer survivors the choice to either engage with it or not and include monitoring of the platform to prevent the spread of false information. |
Involvement of own social network (family and friends) | A clear preference for a supportive role instead of a correcting role: preference for compliments for SC or AM efforts and implicit support such as not offering cigarettes or alcohol, but not repeatedly asking whether someone had smoked or how many drinks they had had. | The social network does not always know how to best support cancer survivors or SC and AM efforts. At the same time, cancer survivors can be hesitant to let people help, recognizing the impact of the cancer experience on their family and friends. |
Moment of addressing AM or SC | Some would like AM and SC addressed at the start of treatment because then they see its potential benefits, but others would only be receptive to it after finishing the treatment phase, as they have too many things on their mind during treatment. | Flexibility in moment of addressing SC or AM. |
Digital delivery mode | Essential to a digital program would be the protection of personal data, not fearing that anyone but the patients themselves could get hold of their data. It should be easy to use, on both smartphones and tablets, and it should be inviting during the most difficult moments of AM and SC. | Guidance, regular updates and interactive content could help motivate use of the intervention. |
Experts’ recommendations for successful AM and SC interventions for cancer survivors
“We see a lot of working people, I feel like they appreciate getting to choose when they want to engage with treatment. On the other hand, the downside is that people really need self-discipline to use the program regularly.” [interviewee E2, eHealth developer and healthcare professional]
Concerning AM in particular, it should be taken into account that realizing the extent of their alcohol problems can be uncomfortable for a patient due to the stigma surrounding alcohol misuse and alcohol dependency.“And then I say: ‘Your palpitations and stress might be related to the way you are handling it [by drinking].’ And that’s when he said: ‘Yes, I should handle it differently and play more tennis with someone.” [interviewee E4, healthcare professional]