We recruited 30 participants, 19 survivors and 11 professionals to the study. Three focus groups (20 participants) and 10 telephone interviews (10 participants) were performed over a two months period between June–July 2019. Concurrent data analysis was undertaken and data saturation was deemed to have occurred when no new themes were occurring in the data. We ran two focus groups with survivors (15 participants) and 1 focus group (5 participants) with healthcare professionals and researchers. Four survivors and six professionals were interviewed by telephone.
The mean age of the survivors was 62 (SD 11.5) years and ranged from 35 to 74 years. Participants were from Great Manchester, Wales, and London. All the survivors where white British, 11(58%) were females and 8 (42%) were males. Thirteen participants provided information on their marital status, education, surgery (Table 1
) and current lifestyle (Figure 3
). The mean age of the professionals was 40 (SD 6.06) years. Professionals were all females and included dietitians, oncology nurses, occupational therapist, physiotherapists, and researchers in nutrition and psychology with mean 12 (SD 7.03) years of working experience and professionals were employed in Manchester and London.
3.1. General Feedback
Both professionals and CRC survivors expressed enthusiasm and positivity towards the HEAL ABC resource and its development. They appreciated the idea of helping people to improve their lifestyle: “I like the personal choice, things about self-determination and self-value and what you want to do” (George, 69) but they also liked the inclusion of evidence-based information on how to achieve the lifestyle change: “Most people know it has something to do with their family, but if you have sensible way how to prevent it then that’s what you have to do” (Clare, 65).
Also, professionals valued the work undertaken on HEAL ABC project: “I think this is brilliant, I am very pleased this work has been done in our specific tumor group. There is a huge need for it” (Dietitian 5).
Feedback from the focus groups and interviews are summarized in Table 2
and further comments and suggested improvements are in supplementary material (Table S1)
. Several common themes identified are detailed in further text.
3.2. Identified Themes Based on Focus Group Discussions and Telephone Interviews
3.2.1. Understanding the Behavior Change Concept
Some participants recognized the importance of the lifestyle change: “I think the whole thing is a brilliant idea how to reduce cancer and it is the way to go…” (Lucy, 67). They also perceived that making a change is not an easy task to do: “And it is very challenging at our age to change but I agree it is not impossible” (Lucy, 67).
Interestingly, the concept of behavior change and planning is a very new approach for many people. This concept can be quite difficult for some people to understand: “Well, you say why I want to make this change? Well, I want to save my life, so it is little bit, I do not know, it is an obvious question, so I do not know if it helps me to just write it down” (John, 66). The participants expected the resource to provide specific diet and activity advice “It should be tailored to every person that it is given to, based on the operation that they had” (Paul, 71) and they did not automatically relate to the concept of the booklets providing motivation and a guide to behavioral change.
3.2.2. Contradictions in Fiber and Wholegrains Consumption
Discussions from the focus groups also revealed that some confusion exists around fiber and wholegrain consumption after bowel cancer surgery with or without active treatment. Participants emphasized that they all have unique needs and many of them are extremely careful about fiber and wholegrain consumption. Based on focus groups and interviews, it appears that some people do not differentiate between diet recommendations provided to them immediately after the surgery and what they are able to eat later. This precaution makes people scared to try new foods they might potentially tolerate. “It is difficult to consume lots of fiber if part of the bowel is removed. It was recommended to me after bowel cancer operation not to eat too much fiber as it could not be digested easily” (Jason, 66).
There are also some clear contradictions on fiber for people with colostomy and ileostomy: “On this one, it says that with colostomy there are no restriction on fiber, but dietitians say that there are restrictions. So, it is contradicting what the dietitians say” (Mark, 69). However, dietitians provided a completely different perspective: “We do not restrict even people with ileostomy too much and try to encourage them to have fiber in their diet” (Dietitian 1).
3.2.3. Malnutrition after CRC
For those participants who were older and had problems with maintenance of body weight, the WCRF/AICR guidelines were contradicting dietitians advice on prevention of malnutrition and weight loss in older people: “Sometimes with our weight, you have to eat some of those biscuits and creams” (Sofia, 74).
3.2.4. Overwhelmed by Information
Most participants felt overwhelmed by receiving 11 workbooks in one package, and healthcare professionals stressed that it could be a potential problem for people. “You literally go home with a library of booklets. You are in an information overload and you cannot start processing information until six weeks post-surgery” (Anna, 49). When participants understood that the workbooks would be ‘drip fed’ in reality and that they only received all the workbooks together for the purpose of review, their responses changed. “I think it shouts out right and its good there are individual booklets” (Emma, 44). However, some participants still would like to see more concise version: “I would cut out the repetition and combine booklets together” (Julia, 71). Similarly, professionals suggested to make the resource more compact “Just speaking out loud, could you have just one workbook where patient will set goals and plan their action with pages for all the themes” (Occupational therapist).
3.2.5. Resource Content
Participants appreciated the educational value of the booklets and consideration given to different types of hints and tips given for eating after bowel cancer. For instance, participants found the portion size guides, healthy tips, swaps, and the goal setting combined with the action plan useful. “This is a useful chart for what you need to buy and what you need to store at home”. “I like a Plan Review as a tick chart to know what you have achieved in the week” (Jason, 66). They liked supplementary booklet on fiber and lists of foods they could choose from. “It was good suggestion to try new things. I found some fruit and veg I have never eaten before” (Jane, 41).
Both professionals and people after bowel cancer agreed that the introduction booklet was complicated and suggested that it needed to be simplified. Some participants asked for more evidence and research behind recommendations in addition to what was provided in the booklets. Similarly, professionals agreed that based on an educational level and the “teachable moment”, people after bowel cancer might want to seek more evidence. Also, participants proposed to keep a balance between bad news and restrictions in booklets that target red meat, processed food, sugary foods, drinks, and alcohol consumption. They viewed some information as being too restrictive, which could potentially create resistance towards making a change.
3.2.6. WCRF/AICR Guidelines on Prevention
Some CRC survivors had negative comments about the WCR statements on cancer prevention. They believed that they followed a healthy diet and did enough exercise, but still were diagnosed with cancer. “So, on the front page you say, eat fiber every day to help prevent cancer. Is that right? I think I followed a reasonable diet and I got cancer anyway” (Paul, 71). Hence, they did not like statement such as “eating fiber can help prevent or reduce cancer risk” and did not believe that making dietary changes can help them reduce the risk. The professionals made similar points: “Some booklets, give impression that if you follow this, you will never get cancer, but we know that people still can get cancer because of other factors. I think you should be more careful with the first pages of the booklets. People may think, they caused their cancer” (Dietitian 3). Also, some participants had a very strong belief about physical activity and exercise: “It is like all these activity booklets you can frighten some people. I think there are many reasons why we cannot do exercise” (David, 70).
Most of the CRC survivors had never heard of WCRF organization and did not understand the evidence base of prevention recommendations provided: “What is this World Cancer Research Fund you are referring to everywhere? I have never heard of it” (Emma, 44). Also, the confusing information that survivors receive from TV, magazines, and social media were concerning. “I just wanted to say that along my journey I used to say and what about my diet, oh just a varied diet, if you want to have bacon have bacon. And then all these things come out on the news about what you should and should not been eating, but no one did formally, so I was quite pleased to see something like this” and pointed at the booklets (Eva, 52).
3.2.7. Final Thoughts
Overall, CRC survivors found the HEAL ABC booklets very useful and wanted to use them in their everyday life. They identified which booklets were the most relevant for them and stated that reviewing the booklets prompted them to think about their lifestyle and possibilities for improvements in diet and physical activity. Professionals acknowledged the importance of the evidence-based resource, involvement of CRC survivors and professionals in the resource development and the potential for use in clinical practice.