Eighty-six percent (n = 183) of invited patients completed a survey. Participants were mostly female (n = 124, 68%), averaging 65-years old (SD = 9.90) and 2.39-years (SD = 1.49) post-cancer treatment. Participants were colorectal (n = 89, 49%), breast (n = 58, 32%) and endometrial (n = 35, 19%) survivors. Most were from Western Australia (n = 117, 64%), followed by New South Wales (n = 46, 25%), Victoria (n = 18, 10%), and South Australia (n = 2, 1%). Participants resided in metropolitan (n = 103, 56%), inner regional (n = 28, 15.3%), outer regional (n = 49, 26.8%), remote (n = 2, 1.1%) and very remote (n = 1, 0.5%) areas, which were collated into metropolitan (56%) and non-metropolitan (44%) areas. Demographic information for illustrative quotes is denoted by M/F (male/female), C/E/B (colorectal/endometrial/breast cancer), MET/NMET (metropolitan/non-metropolitan), age. Additional quotes are presented in the Online Resources.
Physical Activity Barriers
Three themes were identified with respect to physical activity barriers; lacking motivation, environmental, and medical/health barriers. Sub-themes of competing priorities, psychographic profile, and inertia characterised the lacking motivation theme. Environmental barriers formed social and physical environment sub-themes. Medical barriers were reported across cancer-related barriers and comorbidities & pain sub-themes. Additional quotes are provided in Online Resources Table 1.
Lacking Motivation
Psychological barriers pertaining to “a lack of motivation” (M,C,MET,66) spanned across sub-themes of competing priorities, psychographic profile, and inertia. One breast cancer survivor stated “[the] main barrier for me is motivation when you go through such a lot in your life. I tend to give up” (F,B,NMET,71), while others mentioned “willingness” (F,C,MET,54), “mindset” (M,C,MET,73), and “my own state of mind” (F,C,MET,63).
Competing priorities. For some, a lack of motivation was linked to uninterest in physical activity, “I have more interesting things to do” (F,E,MET,65), and these participants reported specific interests, “Prefer sit down hobbies– knitting, reading, puzzles” (F,B,NMET,70), or competing priorities: “my meditations…are much more important to me” (F,B,NMET,72).
Work commitments were frequently mentioned as competing priorities, “Just keep working, it’s a way of life” (M,C,MET,82), with non-metropolitan survivors mentioning manual work: “being a farmer I do a lot of hours driving tractors” (M,C,NMET,74) and “farm work is exercise-rich” (M,C,NMET,72). Participants reported competing priorities alongside limited time: “you know you should be exercising…but work, social, and enjoyment commitments come first” (F,B,NMET,79). Some acknowledged these barriers as excuses, “[I’m] always using the excuse ‘haven’t got time’” (C,F,NMET,36), and “I have other tasks to perform and tend to use this as an excuse for my not exercising” (B,F,NMET,63).
Psychographic profile. Some linked their lack of motivation to psychographic factors: “I am not motivated naturally to exercise although I’m aware of the benefits” (F,C,MET,78), lack of enjoyment: “I have never exercised for pleasure. I only ‘exercise’ when I work” (M,C,NMET,81), or low confidence: “doubt in myself!” (F,B,NMET,47). Others linked perceived competence with a dislike for physical activity: “don’t like sport or exercise…[I’m] clumsy and uncoordinated” (F,B,NMET,74) and “hate water– can’t swim” (F,B,NMET,67).
Inertia. “Laziness” (F,E,MET,68) and “inertia” (F,E,MET,64) were also mentioned as barriers to physical activity. One stated, “lazy, lazy, lazy” (M,C,MET,59), while others mentioned tiredness in conjunction with motivation, “[I’m] quite tired some days…I don’t feel motivated” (F,B,NMET,63) and “making the first move is always hard” (F,C,MET,68).
Environmental Barriers
Barriers were reported across sub-themes of social and physical environment. Social environmental barriers often related to a lack of family support, whereas physical environmental barriers were logistical, pertaining to weather and cost.
Social environment. Primarily female survivors reported “lack of family support” (F,C,MET,56), with some referring to their spouse as a barrier to physical activity participation: “[my] husband doesn’t like me to go out walking on my own” (F,B,NMET,67), “getting caught up with what my husband wants to do” (F,B,NMET,79), and “partner support” (M,C,MET,71). Others referred to broader familial obstacles: “weekends busy with family” (F,C,NMET,65) and “juggling the kids” (F,B,NMET,40). A “lack of social circles” (F,B,NMET,60) was also mentioned.
Physical environment. Physical and logistical barriers, including inclement weather and the cost of facility-based programs were primarily reported by non-metropolitan survivors: “weather– either too hot, cold or wet!” (M,C,NMET,88) and “if the weather is inclement…this makes it difficult to go for a walk. Even driving to the gym can be dangerous” (F,B,NMET,62). The cost of facilities was acknowledged exclusively by non-metropolitan participants: “finances stop me from going to exercise classes” (F,C,NMET,62) and “too expensive at $15 a class” (F,B,NMET,70); along with distance to facilities: “no gym– [it’s an] 80km round trip” (F,B,NMET,67).
Medical and Health Barriers
Cancer-related barriers including the effects of treatment were a sub-theme of medical barriers. Other health-related barriers formed the sub-theme of comorbidities & pain.
Cancer-related barriers. For some, medical and heath barriers pertained to post-treatment complications. Colorectal survivors reported, “the cancer has resulted in my body being restricted in heavy lifting and demanding aerobic exercises…[as well as] secondary illnesses following on from the original cancer, which have interrupted my attempts to maintain/improve fitness” (M,C,MET,63). Another stated “The cancer journey itself, including pain from radiotherapy, nausea from chemo, constraints of managing ileostomy and subsequent hernia” (M,C,NMET,72). Treatment-related barriers were reported, “I have neuropathy…sometimes my balance is affected” (F,B,NMET,75).
Comorbidities & pain. Chronic morbidities inhibited physical activity engagement: “[I’m] incapable due to chronic back pain, arthritis, osteoporosis” (F,B,NMET,70), “heart disease: cardiomyopathy, atrial fibrillation, heart failure” (F,B,NMET,61), “Parkinson’s” (F,C,MET,74), and “rheumatoid arthritis” (F,E,NMET,59). Others mentioned pain, including arthralgia: “aching bones/joints” (F,C,MET,74) and “chronic back pain” (F,C,MET,61).
Dietary Barriers
Participants’ barriers towards making dietary changes fell into logistical, psychological, social environment, and medical themes. Accessibility and cost were frequent logistical barriers, while motivational issues were common psychological barriers. Social environment barriers often focused on family obstacles hindering dietary changes, and medical issues were reported as deterrents. Additional quotes are provided in Online Resources Table 2.
Logistical Barriers
Sub-themes of accessibility, cost and confusion about diet were encompassed within logistical barriers to dietary changes. Access to and cost of healthy foods deterred survivors. Confusion about diet was often linked to conflicting information.
Accessibility. Although the sub-theme of accessibility was mentioned by a few metropolitan survivors, i.e., “access to healthier, cost-effective food options” (F,C,MET,54), it was more prominent in the non-metropolitan cohort: “living in the country it is harder to get nice fresh veg” (M,C,NMET,74). However, the non-metropolitan group was polarised with respect to these factors, with others stating: “we grow most vegetables and fruit…and cook most dishes ourselves” (M,C,NMET,74), “Always grown my own veggies and poultry meat” (F,B,NMET,76) and “meat is butchered on farm and hens provide eggs” (M,C,NMET,72).
Cost. Cost was mentioned across survivors: “cost of healthy foods” (F,E,MET,67), and appeared to overlap with convenience, “eating healthy and clean is hard work on yourself and your wallet. You pay the price on eating healthy” (F,C,NMET,36). Others considered the effort and time involved in meal preparation, “having time to cook and prepare healthy meals” (M,C,MET,45) and “fatigue from food preparation, fatigue from planning” (F,E,MET,61).
Confusion about diet. Confusion about what constitutes a healthy diet and lack of dietary knowledge were reported, “not fully knowing what is healthy” (M,C,MET,58), “lack of knowledge on food choices” (F,B,NMET,63), and “I need to figure out what I can and can’t eat” (M,C,MET,58). Some non-metropolitan survivors referred to conflicting dietary information: “There seems to be so many conflictive information out there. Who do I believe?!” (F,C,NMET,50) and “I’m confused by all the conflicting dietary advice” (F,B,NMET,68).
Psychological Barriers
Psychological barriers to dietary change included sub-themes of emotional eating and lacking motivation. A few survivors also alluded to self-efficacy and weaknesses.
Emotional eating. Females often commented on pleasure: “I enjoy sweet-tasting food. I always include [a] sweet treat” (F,B,NMET,63), and emotional eating, “eating for comfort and to provide highlights in my day” (F,E,MET,64) and “I eat poorly. [I] snack when tired and pushed. That is a fairly constant place for me to be– emotional eater” (F,B,NMET,60). Others mentioned eating as a reward: “Reward or treat-eating– Too easy to give yourself a treat without really earning or committing to the exercise” (M,C,NMET,60).
Lacking motivation. One breast cancer survivor described “bad ingrained eating habits which are hard to rein in. Lack [of] discipline. It is easier sometimes to take the unhealthy option” (F,B,NMET,63). Participants described a “lack of interest/motivation” (M,B,NMET,71) and “not motivated to cook” (F,B,NMET,61), often in conjunction with laziness: “lazy with food preparation; don’t like cooking” (F,E,MET,63). Colorectal cancer survivors referred to “discipline” (M,C,MET,52), “mindset” (F,C,NMET,57), and being “rebellious” (F,E,MET,59). A few survivors alluded to self-efficacy “No matter how hard I try I keep failing” (F,B,NMET,66), “sugar is my downfall” (F,B,NMET,66), and “addiction” to sweets (F,B,NMET,67) or skills for healthy eating: “I can’t cook” (F,B,NMET,55) and “difficulty preparing food” (F,C,NMET,57).
Social Environment
Social and family-related barriers were common, with several survivors commenting on the difficulty of having “a family of fussy eaters” (F,B,NMET,52), while males worried about “disrupting my wife’s menus!” (M,C,MET,73) and “don’t want to be a burden on my family” (M,C,MET,75). Survivors were influenced by their partner’s preferences: “my husband can say ‘let’s have something for tea’ like a toasted sandwich or fish and chips and I fall into line” (F,B,NMET,79), “my husband does [the] cooking” (F,E,MET,64), and “choice of food is not independent– somewhat dependent on partner’s choices” (M,C,MET,68). Broader social environments were also mentioned, including “events with family/friends and kids” (F,B,NMET,46), “eating out” (F,E,MET,59), and “social pressures” (M,C,MET,73).
Medical Barriers
Cancer or treatment-related barriers to eating a healthy diet were identified, especially amongst colorectal survivors: “I have limited diet choices after cancer treatment” (M,C,MET,58), “my bowel problem…my bowel ends up ruling everything at all times” (F,C,NMET,62) and “changes to certain foods [I can eat] after bowel surgery” (M,C,MET,53). Survivors reported “being limited to what can be eaten” (F,E,MET,59) and “limited variation of foods I can tolerate” (F,B,NMET,55).
Supports for Change
Physical activity and dietary change supports fell into practitioner & informational support, accountability & monitoring, and social environment themes. A desire for practitioner support towards change overlapped with informational needs, as survivors referred to programs developed by specialists. Survivors desired accountability, monitoring, and a supportive social environment, with sub-themes of partner and group support for change. Additional quotes are provided in Online Resources Table 3.
Practitioner & Informational Support
Sub-themes of practitioner support and informational support arose, however there was overlap between these sub-themes. Survivors referred to support from a range of practitioners and allied health professionals. Informational support for change was linked to the role of specialists, particularly the desire for a specialist-delivered program.
Practitioner support. Practitioner supports were expressed primarily by colorectal and breast cancer survivors for a range of health professionals, including, “doctors” (F,C,MET,41), “GP” (F,B,NMET,55), “cancer nurse” (F,B,NMET,67), “dietician” (F,C,NMET,36) “personal trainer” (F,B,NMET,40), “health coach” (F,B,NMET,74), “physiotherapist and nutritionist” (M,C,NMET,72), and “life coach” (F,B,NMET,73).
Some desired the support of a health professional in conjunction with the informational support of a change plan: “need to consult a nutritionist to work out [a] proper diet based around limited food I can eat” (M,C,MET,58) and “exercise physiologist to structure best program and follow through at gym for fixed period (e.g., 3 months)” (M,C,NMET,60). Survivors often considered their doctor to be a primary support source who could subsequently recommend allied health professionals: “your own GP. They can put you on the right path as to contact information…Your GP also has your health info if you have other health issues and can advise on diet” (F,B,NMET,55). Others indicated an overlap between health professional and informational needs to support change: “dedicated health ‘help desk’ line in specialist recovery from cancer departments” (M,C,NMET,72).
Informational support. Informational needs appeared to be related to confusion about recommended health behaviours. Survivors across locations expressed a desire for “knowing what is healthy and what is not. Too many studies with conflicting outcomes” (M,C,MET,58) and “more information about the benefits and reduction in cancer recurrence risk” (F,B,NMET,46). Some desired a diet or exercise program to foster change: “packaged dietary program that would deliver healthy choices and controlled portion size” (M,C,NMET,60) or “a structural program of what to do” (F,C,MET,53). Others sought actionable guidelines: “understanding why the change is necessary and what the changes can do for you, from professionals [and] help with prioritising what changes are needed first” (M,C,MET,61).
Accountability & Monitoring
Non-metropolitan respondents described accountability and monitoring to support change: “check from someone to keep me accountable and motivated” (F,B,NMET,68), and “regular checks by someone else [to] keep me focused” (M,C,NMET,63). Another desired “motivational goal setting for support, encouragement and monitoring” (M,C,NMET,60). Weight was mentioned in conjunction with accountability, “others accompanying me, measuring my success” (F,B,NMET,54), “weigh-in” (F,E,MET,72) and “motivation to lose weight…a month to lose weight then weigh in and keep going back to get down to goal weight” (F,E,MET,63).
Some desired a mentor for change: “An occasional conversation with an interested mentor would assist more than anything” (F,B,NMET,68), “positive reinforcement, encouragement without competition” (F,C,MET,63), and “having a coach to offer support and encouragement” (F,B,NMET,62). Participants also mentioned self-monitoring and feedback: “a daily measure of my exercise achievement to keep me on track” (F,B,NMET,65), “being monitored/accountability/reward” (F,E,MET,61) and “feedback from progress” (F,E,MET,59). Survivors mentioned wearable trackers and described apps, “where I can see all my efforts and compare to others” (M,C,MET,45) and “an app to keep on target” (F,B,NMET,63).
Social Environment
Within social environmental supports, sub-themes of partner support and group support were identified. Across sub-themes, participants desired the company of others with a similar health goal.
Partner support. Participants desired support: “partner support, family support, peer support” (M,C,MET,65) and “my partner’s support without pressure” (F,E,MET,65). Others mentioned practical involvement: “my wife to be on the same plan. I would be more inclined to keep following the plan” (M,C,NMET,63), and “a partner with similar goals– easier to stay focused and avoid temptations” (F,B,NMET,60). A couple of participants mentioned “family encouragement” (F,E,MET,39) and “support from friends” (F,B,MET,73).
Group support. “Group support for cancer survivors” (F,E,MET,67) was considered to be valuable for metropolitan survivors, along with “surround[ing] myself with like-minded people” (M,C,MET,52) and “encouragement in programmes…which give info about helpful strategies and show that others are dealing with the same issues” (F,E,MET,59). Others referred to more active “group discussions” (F,C,MET,68) and “small group activity classes” (F,E,MET,64).