A framework of 20 themes and 33 subthemes was developed including topics such as impact for caregiver, changes in employment, and confidence. Although not part of the primary analysis, it became apparent while reviewing the framework that both patients and their informal caregivers recurrently used concepts of “luck” to describe their situations.
This narrative was present when individuals described their general outlook on life and as a mechanism for drawing comparisons to “other” people. These were not usually named individuals, but generalized perceived as facing harder circumstances. Further examples from the transcripts are provided in appendices 1 and 2, http://links.lww.com/OR9/A2.
3.1 People with cancer
People with cancer particularly referenced “luck” when discussing the social support available to them. This was most pronounced when discussing family and support systems; in one example a distinction was made to a person with cancer seen in a clinic setting while most other references were cognitive constructions.
- I realise how lucky I am and I feel desperately sorry for people like her, you know that haven’t got that support close to hand […] I’m lucky because I’ve got somebody with me all the time. (P52)
- I’m lucky I suppose really you see, I’ve got the help that perhaps somebody else hasn’t got. (P37)
In addition to support, participants with cancer made the most downward comparisons when discussing overall wellbeing and the disease impact on work or finances. When discussing the disease itself, the comparative focus was directed toward different types of cancer or other diseases entirely. Some of these observations were to people seen in clinic perceived as struggling without knowledge of their experiences. Others were made to real friends or relatives with different health concerns.
- We go to (hospital) and you only have to look around the room and you just think you’re not too badly off here. It's not too bad. (P26)
This application extended to discussions around the type of treatment a person received, particularly if a participant felt their treatment schedule was flexible or their medical team understood what was important to their quality of life. For example, participants receiving systemic therapies referenced “luck” in relation to treatment side effects if they were not as bad as others had experienced or as they imagined them to be.
- And obviously because of the chemotherapy although I’ve not coped that badly with chemotherapy but you don’t feel 100% you know I’ve had very minimal side effects like my legs ache and things like that but I’m lucky compared to most people. (P35)
Participants without visible effects of surgery discussed managing day-to-day with relative anonymity. They reflected that although surgery required recovery time, it had not impinged heavily on work and other responsibilities, observing a presumed burden of systemic treatment.
- I don’t think having a bit more hair, not having a scar, would make me more confident in my conversations in day to day life and in work. So again, I’m quite lucky like that. Had I have had chemotherapy and lost all my hair totally overnight, I would probably be different I think. (P26)
People with cancer who were still working described themselves as lucky to receive support from their employer. In particular this descriptor was used by those who felt they had a positive career or fiscal standing without worrying about time off; contrasts were made to people carrying that burden alongside their diagnosis.
- We are extremely lucky, we do know that because at least we can still earn an income and we don’t have the financial worries that some people have to have. (P43)
Equally, those individuals who had retired from work before diagnosis described feeling fortunate to not need to juggle employment responsibilities or a loss of income alongside a schedule of appointments.
- I’m in a better position than a lot of my peers and I imagine other people who’ve been diagnosed with whatever cancers and have money worries, job worries […] how people can cope with that when they’re in work, I don’t know. (P17)
Those participants needing financial assistance or lifestyle adjustments to accommodate employment changes still differentiated themselves from those they felt were unable to make such modifications.
- I’ve been really blessed with a lot of people who’ve given me time and a lot of help. So financially, at this moment in time, I’m okay. I’m very lucky because I’m sure that there are a lot of people who are not. (P62)
Certain participants with cancer posited themselves as generally being “lucky,” making downward comparisons against an imagined group, as opposed to named individuals.
- I’ve got nothing to look back and feel sorry for myself. If I died tomorrow, I’ve had more happiness in my life than a lot of people have had in a hundred years you know? […] so I just think I’m such a lucky person that what is there to feel miserable about. (P28)
3.2 Informal Caregivers
Informal caregivers similarly referenced general “luck.” Unique to this group of participants, however, was the conceptualization of “luck” based on hypothetical positioning to what could have been or predictions as to how they would later feel about the caregiving experience.
- But I think at the end of it I’ll look back on it and I’ll be like thank god for it. I’ll be like thank God that happened because it has made me stronger and it has made me more knowledgeable and more understanding […]. (C57)
Using the same method as those individuals with cancer, informal caregivers made health-based evaluations either in the context of the person with cancer or their own wellbeing.
- Because cancer's so depressing […] P5 would go for chemotherapy and you’d see somebody in a far worse boat than yourself, and then you think, well actually today I feel really positive […] they just might be at a different stage or they just might have had some worse luck, and then you feel a bit mean. (C5)
Social comparisons were used to describe the person with cancer as lucky or to draw personal contrasts to them.
- As I say it opened my eyes completely to a whole new outlook on life. And it's suddenly become … well I was going to say it's become a big thing in my life but that's not fair because it's not a big thing in my life really because I’m lucky at the moment. (C9)
There was an example of upward appraisal as an informal caregiver wondered why the person with cancer was “unlucky.” This was not reflected in the dialogue for the other member of this dyad. This direction of assessment was not a prominent feature of discussion across transcripts and therefore this reference stood out by nature of its contrast.
- I do feel aggrieved. You know, you get the syndrome ‘why us?’ Now there are thousands, tens of thousands of people with cancer […] Still I felt that, particularly of what she’d gone through in her life up to then […] Clearly nobody deserves it but she really didn’t deserve it, but that's life. (C12)
Informal caregivers employed the term “lucky” when discussing finances, be it in relation to an unchanged income or circumstances affording financial freedom. Similar to people with cancer, informal caregivers who maintained employment, or felt comfortably retired, positioned themselves against other people perceived as facing greater financial burden. Caregivers also ascribed “luck” if either they or the person they supported was able to maintain an income or an employee health package.
- He is really lucky where he is from a health benefit point of view, health insurance and the benefit packages were really good, and his boss has been really good, and you think you never know. (C73)
Additional to the daily monetary impact, informal caregivers observed these differences when discussing future financial security.
- We’re very lucky in that we don’t really have any problems that way. That's not to say we’re multimillionaires or anything but, we’re quite comfortable. So no I mean, if anything happened to P46, I’m more than well looked after. (C46)
People with cancer and their informal caregivers employed the concept of “luck” to describe their experiences, stemming from downward observations to “other people” presumed to be in worse situations. There is a precedent within the cognitive literature for people experiencing great stress to describe their experiences positively, including a cancer diagnosis, by drawing contrasts to others.[3,24,25] Our findings provide an insight into these social comparisons and how they manifest in conversation.
To the researchers’ knowledge the concept of “luck” has not previously been reported in an advanced disease setting for both people with cancer and their informal caregivers. There could be various reasons for this occurrence; first, it is reasonable to assume that people with cancer and their informal caregivers share in conversations, potentially mutually adopting a particular use of language. Second, language is culturally based with a dialogue unique to the cancer setting and, without comment about the appropriateness of “battle” language, it may be that “luck” fits in with this. Third, the use of “luck” could be seen as a more socially acceptable way of comparing oneself to other people.
Previous research has shown that a feeling of increased threat drives more downwardly evaluations but in the advanced disease setting, real life comparators are not necessarily available. In line with this, PROACT participants did not usually make reference to real, named individuals. Instead most of the examples presented were based on a generalization to “others” who may or may not exist. If a participant did reflect on a specific individual, they could have been doing so based on a perceived similarity.
Both uncertainty and social comparisons were identified during the process of coding the PROACT transcripts and it would be interesting to further analyze whether the same individuals employed both forms of language.
Downward explorations are often made for the benefit of self-esteem and this is best seen in a naturalistic setting where the perceived threat is explored; however, records of this composition are sparse.[9,27,28] PROACT interviews focused on the impact of cancer and the nature of this conversation could have stimulated or enhanced these cognitive constructions. The presence of this language may of course have been a facet of demand characteristics. As Wood et al point out, when confronted with choosing an accurate or favorable self-assessment, the deciding factor might be the perceived challenge to self-esteem. In particular, study participants had only met the researchers a few moments before their interview and there could have been a desire to present the best version of themselves. There is an argument however that as the participants would never see the researchers again, they may not be as concerned with self-preservation.
4.1 Study limitations
Owing to the qualitative nature and small sample size of this work we acknowledge that our findings are limited in terms of diversity, be that in the range of tumor groups included or the geographic locations represented. This will naturally impact the generalizability of our results; for example, the references to “luck” apparent when discussing financial situations may reflect a lack of socioeconomic diversity. The prevalence of middle class representation in studies could over-represent the presence of “luck” or downward social comparisons as people in this sociodemographic might in fact have more accessible comparators. Research has shown that people avoid appraisals if they do not feel that they would offer positive results; participants may have displayed demand characteristics in response to the researcher, for example, an individual potentially felt it was culturally appropriate to express some positives so as not to be seen as complaining.
As this phase of the PROACT study was designed to explore issues of quality of life and the impact of cancer, those individuals who wanted to take part may have naturally been more likely to undertake a process of emotional review than those who declined the study. The social comparison narrative may also be a function of time since diagnosis as PROACT only provides a single snapshot of each participant. Other researchers (eg, Schulz and Mohamed) note that it is impossible to know when any changes occurred in terms of psychological conceptualization and the subsequent effect of this.
4.2 Future research
To address some of the limitations noted above, future work could feature a more diverse population to capture a broader range of financial, cultural, and religious backgrounds. It would be interesting to interview a wider sample, both in number and diversity, to explore whether this use of language perseveres. These factors may result in varying use of social comparisons.
People can benefit from making social comparisons, with research suggesting that individuals employing cognitive processes such as insight and causation experience higher rates of mood disturbance compared to those with an affective style. This difference in processing may serve as a target for future research exploring whether this can be a learned technique for both people with cancer and informal caregivers.
Downward evaluations can be a double-edged sword; those using them may find benefit but in a position of declining health, the comparator could instead serve as a forewarning. It would be interesting to follow both people with cancer and their informal caregivers from early diagnosis onwards to explore if there are any changes to their verbal conceptualization of the disease and who or what serves as a comparator. Schulz and Mohamed point out that the processes of benefit-finding and making these observations require time and can change in light of different pressures. Within a medical setting, stressors vary across time points such as diagnosis or during treatment and there might be variations in the use of this construction across different prognoses. It could be interesting to explore a subcontext of this which is a person's conception of their illness, its severity, and the presence of comparators. This may also impact, and be affected by, a person's use of health services and help-seeking behavior.
This understanding could be utilized in future research exploring whether there is an interaction of the dyad communication and expression of these appraisals; do both members use them, are they in the same direction, does one member of the dyad drive that mechanism and what, if any, benefit is conferred? By understanding the use of this mechanism further, not only will we be adding to our knowledge of the cancer experience for both individuals but it could provide an avenue to explore for future interventions; can these comparisons be encouraged within a dyad and would this be helpful? For example, actively capturing the occurrence of comparisons within and between members of a dyad, or an intervention implementing and comparing outcomes of various cognitive strategies for patient and caregiver.
4.3 Implications for psychosocial oncology practice
The use of social comparisons may provide a signal to the healthcare team that an individual requires further information and support. By paying attention to the use of this language, HCPs have the opportunity to tailor information-giving to match the needs of both patients and caregivers. For example, a patient starting to experience side effects of treatment might start making evaluations as a way of seeking reassurance about what to expect. As noted previously, the interaction with patients who are facing more difficulties may be too threatening hence the cognitive construction of “others”; it is important to be mindful of this balance when suggesting support groups or introductions with other patients.
Although a lot of social comparison work has focused on people with cancer, it is unique to see the same language being used by informal caregivers as well.
The qualitative interviews collected during the PROACT study provide a naturalistic expression of social appraisals. Both people with cancer and informal caregivers crafted narratives of being lucky in various areas of life while using a comparator presumed to be facing more difficult circumstances. Given the nature of this study, participants could explore anything they wished in response to very open ended prompts, and it is interesting that a word such as “luck” was used to describe their experiences.
6 Conflicts of interest statement
The authors declare that they have no financial conflict of interest with regard to the content of this report.
The authors thank the participants, clinical teams, and advisors with lived experience of cancer who helped us with this study.
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