The impact of the COVID-19 pandemic on the health behaviours of people living with and beyond breast, prostate, and colorectal cancer—a qualitative study

Participants

From the 620 potential participants, an initial 10% shortlist was created based on the sampling characteristics. From this shortlist, a total of 32 participants were approached to take part in the interviews as they presented with the diversity of sampling characteristics required. Two individuals declined to participate, explaining their reasons as current physical illness and depression. Thirty participants were interviewed, after which thematic saturation was attained; therefore, the rest of the shortlist was not approached. Sample characteristics are shown in Table 1. The most prevalent characteristics were white-British (75%), married (70%), and aged 50–70 (77%).

Table 1 Participant characteristics

Interviews were conducted November 2020–February 2021. To provide context for the results reported in the subsequent sections, an overview of the cycles and stages of lockdown in the UK is provided in Table 2.

Table 2 Cycles of COVID-19 lockdown (March 2020–February 2021)Thematic framework

Five overarching themes were identified which applied predominantly to dietary and exercise behaviours: 1) changes in the role, importance, and meaning of food; 2) weight management; 3) drinking behaviour and relationship to alcohol; 4) adapting following disrupted exercise behaviours; and 5) motivation for exercise and maintenance of routines.

Changes in the role, importance, and meaning of food

Lockdown measures triggered significant shifts in all aspects of daily life and routine. Some participants reported changes in the procurement of food as the pandemic developed, with initial panic buying resulting in specific shortages (bread, certain fresh fruit, and vegetables). A proportion of the sample—particularly those who felt at risk with comorbidities, were experiencing bouts of illness, and those deemed ‘vulnerable’—avoided food shops as the lockdown unfolded. Some reacted to the loss of agency by drastically narrowing their food/meal choices, whereas others appeared to become more adventurous, recognising they had to “make do” with what was available or rely on delivery companies for some fresh food.

There’s a little bit of an unknown of what’s turning up….I literally looked at this green thing and wondered what it was, I mean it was a squash!

Many participants noted the uniqueness of having an unspecified amount of time with no plans or routine, with some dubbing the experience as the ‘gift of time’, which appeared to initiate a cascade of changes in relation to how food was considered, consumed, and reflected upon. With cancelled holiday plans and an unexpectedly hot spring/early summer, some participants felt able to relax and actually ‘enjoy’ early lockdown, and food took on a central role. This was particularly true of those living with family in more rural settings with outdoor space, who were able to relax and spend time together as a unit, almost as if they were ‘on holiday’. However, the juxtaposition of a quasi-celebratory atmosphere set against the increasing bleakness of the news appeared to lead to changes in the types and frequency of food eaten among many participants. Restrictions meant that people moved less and ate more, preparing and consuming richer, more indulgent meals and snacks in greater volume, especially at the start of the pandemic. Food appeared to act as a panacea for a number of emotions, ranging from fear, boredom, commiseration and anxiety, to euphoria, excitement and celebration.

We were eating very indulgently; it was as if it was Christmas so whatever we wanted to buy we were buying

The nature of participants’ original cancer diagnosis appeared to play a role in the motivation of some to retain dietary habits during the pandemic, where relationships with food had been altered after diagnosis and a particular diet followed.

Cancer showed me that I wasn’t infallible….mortality situation and what happens if you don’t look after yourself

This was particularly prevalent among participants with a colorectal cancer diagnosis, many of whom were acutely aware of the link between diet and its impact on their bodies. The presence of a stoma added a layer of complexity to this relationship, with a daily reminder of the impact of too much or the wrong kind of food.

You’re more connected than you’d ever believe…if I indulge myself in something too much I know what the consequences are

Other participants reported their habits did not significantly change during the pandemic; some had kept a food diary since diagnosis and tried hard not to veer from it. Information from GPs, the internet and friends/family were reported as influencing food choices and behaviours.

Overall, the early phase of the pandemic provoked anxiety for a number of participants. For many, this initial difficulty with the fundamental need to obtain food exacerbated feelings of uncertainty and distress, which resulted in a focus on food that seemed to endure throughout the pandemic.

Weight management

Awareness of weight was an important issue for many participants and one that came into sharper focus for some as the pandemic progressed and early indulgences persisted. Weight issues described by participants fell broadly into three groups:

i)

moderate weight gain; this was reported mostly by women with colorectal cancer diagnoses and/or participants living alone, some with significant comorbidities and less family/social support. Emotional difficulties, loneliness, and pre-pandemic weight issues were reported to have contributed to the weight increase;

ii)

minor weight gain; mostly reported by women with breast and colorectal cancer diagnoses. This group cited the changes in routine enforced by restrictions, the weather and the ‘holiday’ atmosphere at the beginning of the pandemic for decreasing PA and reduced resistance to sweet/sugary snacks. There was also evidence that the gain/loss of the same few pounds was a normal behaviour over the course of a year under non-pandemic circumstances, where a small weight increase acted as a trigger to reduce calorie intake and increase exercise;

iii)

stable weight or minor weight loss; reported mostly by older men (most of whom had a prostate cancer diagnosis) and women who had a somewhat inflexible approach to food/health—expressed through keeping food/weight diaries and sticking rigidly to a certain regime. Two women in this group reported that they had experienced eating disorders in the past.

A change in eating habits was reported by a number of participants across the three groups after the summer ended, which coincided with worsening infection rates and subsequent lockdowns. This more conscious and cautious approach to food and eating appeared to be underpinned by a growing awareness of the link between metabolic risk factors and death rates from COVID-19, as these facts increasingly entered the vernacular.

We’d sit and play games….nibbling crisps….we looked back and thought it was gorgeous but it all had consequences which as sensible people we knew we had to change

A number of participants reported attempts at resetting their eating habits; reducing frequency of baking and eating desserts, cooking healthier recipes, decreasing meat-based meals, and for some, reinstating tried and trusted methods of food restriction and weight loss (i.e. Weight Watchers, Slimming World). Support from family members was deemed important in this endeavour; for some, a collective/family attempt at healthier habits was implemented. This was less straightforward for those living alone and/or with significant comorbidities and reduced access to shopping and cooking, with some single participants reporting staying healthy was very challenging throughout the pandemic, as boredom and despondency increased, and food appeared to act an antidote. Many reported increasing reliance on convenience food as shopping opportunities were limited, entering into a cycle of eating energy dense foods that became difficult to resist.

Drinking behaviour and relationship to alcohol

The ‘gift of time’ posed a challenge for participants in the management of their alcohol intake. Whilst pre-pandemic baseline alcohol intake varied across the sample in terms of drinking frequency, type of alcohol chosen, and number of drinks consumed in one sitting, many participants described increases during the pandemic.

It’s a little bit of ‘actually do you know; I can’t really do anything else!’

Many participants noted they drank more frequently, consumed alcohol earlier in the day than normal, and opted for more indulgent drinks (e.g. swapped beer for cocktails, drank gin and tonics instead of white wine). Some reported ‘treating’ themselves with alcohol, or compensating for the absence of pleasure elsewhere; alcohol as a ‘reward’ was commonly raised as justification for this behaviour.

I often do dry January, but this year I thought…‘oh god life’s tough enough’....

Some participants noted whilst they were drinking more frequently at home, consumption was more evenly spread across the week, rather than drinking higher volumes at the weekend in pubs and restaurants. A number of people used this change in habit as a justification for higher intake, i.e. they felt that ‘slow and steady’ vs ‘binge’ amounts kept their intake at an acceptable level.

Fewer participants professed to reducing alcohol consumption as summer ended and winter approached (as many had to some extent with food choices), although ‘Dry January’ did appear to prompt some to consider their behaviour around alcohol a little more closely. A small group of participants reported drinking more alcohol led to them snacking more on salty, fatty foods, and exercising less. With Christmas cited as a normal time for indulging in alcohol, the bad weather, dark evenings, and ever-rising flow of bad news provided a convenient backdrop for sustained increases, suggesting a growing reliance for some on the mood changing quality of alcohol. For some single, urban dwelling participants, reliance on alcohol was often cited.

It’s been quite easy to reach for the bottle on these gloomy evenings

In contrast, a contingent of participants reported the pandemic did not change their alcohol consumption at all. For some, their original diagnosis had resulted in a reduction in, or even elimination of alcohol, which did not change in lockdown.

No, I stopped drinking oh about three years ago, I said it’s not worth it now so I’ve not taken a drink in about three years

A number of participants cited an intolerance to alcohol since treatment/surgery (esp. those with colorectal cancer); others reported their cancer diagnosis prompted a realisation of the link between alcohol and ill health (particularly women with breast cancer).

Adapting following disrupted exercise behaviours

The pandemic resulted in substantial reductions in exercise behaviours for many participants, with closures of sports clubs, gyms, pools, and other facilities. Some participants also described reducing physical housework and gardening because of a lack of visitors. Having to stop work, or change to working from home, was difficult for those with physical jobs who missed the exertion of their work. Even those in more sedentary employment lost the opportunity to exercise on their commute or at lunchtimes.

at work, I go up one, two, three, four, five, six, seven, about eight flights of stairs.

Regular exercise activities prior to the pandemic were reported as presenting a structure and routine to people’s lives, providing motivation to get through other challenging parts of their week. As these activities had to be abandoned because of the pandemic, some participants described the loss of other routines they had attached exercise to, such as swimming after a school run, or walking following a day at work.

I’d do the swimming, depending on what time my shift started or I’d do it after if I hadn’t got to do a school pick up or drop off, or something. I’d go and have a swim and a sauna, and stuff like that after work

Participants often described the absence of exercise activities in combination with other losses. Many who paired socialising with exercise found it hard to replicate this type of social activity during the pandemic. Without the common link of the exercise/sport/club, it appeared difficult to maintain those specific social relationships. Others missed the sense of personal wellbeing they felt from their exercise activities and reported an associated reduction in their general feelings of vitality and motivation.

physically I feel like I’ve aged…because you’re not doing anything physical, and I’m used to doing something physical at least two or three times a week, you miss that and it then …ages you

Those participants who reduced PA complained of feeling less tired yet wearier, with decreased sleep quality and tendency for daytime naps. The opposite was claimed by those who increased PA levels in lockdown.

I actually think it makes me more tired …I sit here and think ‘how the hell did I have the energy to go dancing’ and then I think … doing exercise …gives you that bit more energy

Whilst some participants struggled to exercise during the pandemic, many attempted to embrace the ‘gift of time’ by replacing lost activities and routines with something new. They described using the extra time to more easily plan and structure alternative activities. The majority engaged in regular walking, often describing it as ‘the only thing I can do’, but there were many other examples of home gyms/circuit training, running, cycling, and online classes. Although more accessible, some participants (particularly older) found the move to online exercise was ‘just not the same’ and clearly lacked comparable social benefits.

Motivation for exercise and maintenance of routines

The motivation to exercise and maintain this activity was described as being driven by internal factors, external influences, and environment. Good weather facilitated outdoor exercise during early phases of lockdown, whereas restrictions during the winter months appeared to be more challenging, with little to do to offset the sense of loss of freedom. This restricted participants’ ability and willingness to engage in healthy behaviours, often substantially reducing or discontinuing activities and routines previously developed during the early stages of the pandemic.

Some factors, such as the desire to be competitive or to maintain a certain body image, appeared to be driven by how participants saw themselves in relation to others, which provided an ongoing calibration of their success. Others were more driven by their inner sense of health and wellbeing, such as the links between exercise endorphins and good mental health or maintaining levels of fitness. This was often reinforced by the news, which spoke increasingly of the link between health and susceptibility to severe COVID-19. Several participants discussed longer term goals based on wanting to be healthy and ensure a good quality of life as they aged.

after the [cancer] hit you were realising that life could end and therefore, I didn’t want to have an unhealthy older age

A number of participants reported how the exercise behaviours of family members, friends, or other cancer survivors inspired them to increase activity and try new things. Additionally, the influences of health professionals (GPs, oncology staff) and YouTubers in recommending appropriate activities were also cited as sources of inspiration and motivation. Being at home during the pandemic had variable impact on motivation for participants, with many citing that greater flexibility with their time facilitated new activities, whereas others found ‘it’s not so easy to motivate yourself at home’.

Being able to set targets was often a motivating factor for maintaining exercise behaviours and provided meaning and purpose to the activities. Externally prescribed targets, such as 10,000 steps or preparing for specific challenges and events, were motivation for some, whereas others set their own personal targets to work towards.

I use a Fit Bit now and I would have only have done about 2,000 steps a day, whereas now I do a lot more, 8,000-10,000 steps

Monitoring progress provided a structure and metric for success for some, which was managed through apps, spreadsheets, or simply by noticing improvements in fitness. However, some participants found that setting—and then missing targets—had the opposite effect on their enthusiasm.

A contingent of participants had more successful maintenance when exercise was integrated into other activities or had a particular purpose. Location was an important factor, with many discussing the importance of having easy access to open spaces to exercise in. The weather was a significant factor and could be used as a positive reason to go outside when it was pleasant, and an excuse to stay indoors when it was inclement. For most participants, social restrictions meant that a primary motivational factor was being outdoors and just being ‘desperate to do something’.

Ideal Types analysis

A secondary analysis to investigate health behaviour typology produced five types. The intention of this analysis was to describe amplified or optimal forms of the types present within the data [35]. Participants appeared orientated to one of these types above the others, although a minor degree of overlap between types was observed. (See Appendix C for more detailed descriptions and example quotes).

Long-term habitual exercisers

Reasonably health aware, with regular PA perceived as an important and pleasurable activity comprising a meaningful part of their lives. Monitoring PA was deemed satisfying and valuable, and motivation to undertake it appeared driven by a strong internal mechanism prompting regular participation; ‘an inner monologue saying ‘right you need to do something now’… (it) wants me to do the right thing’. Exercise was often prioritised over other activities in their day, its importance seemingly part of their self-concept; ‘It’s who I am …it’s what I do’. Many participants in this group also had a pragmatic and balanced approach to their diet, claiming to adhere to healthy guidelines. However, their ‘inner monologue’ was less present in relation to alcohol; a good number of individuals used their adherence to PA/dietary guidelines to justify their alcohol intake.

Pragmatic integrators

Most in this group did not concern themselves with dietary, PA, or alcohol guidelines beyond basic principles (i.e. not smoking, less red meat, some fruit and vegetables). Participants expressed the importance of ‘staying active’, which was deconstructed as ‘being on the move’, being able to walk reasonable distances, being active in their work, not sitting down for too long at any one time and keeping a positive attitude in life through hobbies and social interaction, as opposed to formally seeking to undertake PA. Some retired individuals reported their grandchildren kept them ‘on their toes’, and believed gardening and housework were ways of ‘keeping fit’. The notion of gym membership or pursuit of formal exercise as separate to everyday activity was not part of their agenda. Prior to the pandemic, some in this group tended to work in manual jobs (commercial kitchen worker, supermarket lorry loader, brewery worker), and all felt their jobs were sufficiently physically demanding to reassure them that their activity level was acceptable. Part of this reassurance appeared to be predicated on a comparison between themselves and others who were deemed less active.

Reactive convertors (cancer diagnosis)

This group was characterised by its shift in attitude towards health behaviours after a cancer diagnosis. Prior to cancer, participants claimed they had varying degrees of negative health behaviours, a lack of awareness of healthy guidelines, and a disinterest in and/or inability to action change in regard to their health. This was despite comorbidities such as diabetes, high blood pressure, high cholesterol, and advice from medical professionals to tackle these problems. The cancer diagnosis triggered a marked awareness of their own responsibility for their wellbeing. However, this was moderated by the perceived seriousness of their diagnosis. For example, some women with a breast cancer diagnosis and certain men with prostate cancer, whose disease allowed a reasonably straightforward treatment (e.g. lumpectomy only or a ‘watch and wait’ approach respectively) reported a feeling that they ‘didn’t have ‘proper’ cancer’ compared to those with a more complex disease pathway. Some participants cited how schemes such as local NHS intervention-based programmes targeting weight and PA gave them a realistic starting point combined with gentle goal setting, which felt manageable and not overwhelming. In some cases, participants in this group appeared to start displaying similar characteristics to the Long-Term Habitual Exercisers, but with the motivation stemming from their diagnosis.

Inadvertent convertors (pandemic)

Unlike Reactive Converters, this group included people whose cancer diagnosis appeared not to have triggered changes in health behaviour. However, the notion of responsibility for their own health began to develop specifically during lockdown, through a combination of serendipity, the ‘gift of time’, and a growing awareness of the link between health and susceptibility to Covid-19. For some, unplanned events such as being gifted a Fitbit or being inadvertently enrolled in a diabetes prevention programme by their GP contributed to triggering health behaviour modifications. This resulted in changes during the pandemic that included seeking out health advice (friends, family, internet), an examination of activity levels and a reappraisal of dietary and alcohol habits. Growing knowledge and participation was seen as empowering, and many in this group reported increases in physical and mental well-being as they progressed on their pandemic-inspired journey. It seems feasible that the changes initiated in this group might be more fragile given they were linked to transitory events that did not carry the same impact as the Reactive Converters; therefore, the potential to ‘return to normal’ could be higher in this group.

Health aware but unable/resistant to change

The smallest group in the sample, participants here were characterised by their age (generally younger), greater severity of cancer diagnosis/treatment and more substantial presence of comorbidities. Two subgroups were evident: 1) participants who recognised engaging in positive health behaviours was important and claimed to want to make changes, but felt unable to do so because of fatigue, mobility issues from injury/overweight, complications from cancer treatment (e.g. stoma) and an acknowledgment their eating/drinking patterns might be disordered/addictive (i.e. overeat, binge eat or drink, do little or no exercise); and 2) participants who expressed an understanding of the associated risks of negative health behaviours but felt it was equally important to eat and drink what they want and live their lives to the full. This was largely because they had been diagnosed early and felt life was for living rather than adhering to guidelines; ‘It was like do you know what, I’m alive so eat what you want’. Some participants across both sub-groups reported loneliness and an absence of social/family support that appeared to impact their eating, drinking and exercise behaviour.

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