Colorectal cancer: a qualitative study of coping strategies used by survivors, with associated social determinants

A descriptive, qualitative study was conducted in the island of Majorca (Spain) between 2017 and 2019. We included patients diagnosed with colorectal cancer between 2011 and 2012 in the public hospitals in Majorca and identified through the Majorca cancer registry. Definition of survivor, met by all participants, was staying cancer-free 5 years after diagnosis and treatment. Patients with metastatic cancer, patients under active treatment and patients treated exclusively in private hospitals and those with cognitive impairment were excluded.

A sample of 21 survivors were included, after purposive selection using theoretical sampling aiming at discursive variability regarding age, sex, cancer location (colon/rectum), cancer stage and type of treatment received. Only one male patient with colon cancer, who agreed to participate, did not attend the appointment for the interview. Saturation was considered to be reached, and later interviews did not indicate any significant new concerns. Table 1 shows participants’ characteristics.

The information was obtained through interviews. In accordance with the literature and the objectives of the study (relationship with the health system, experience of the process and coping strategies), we formulated a semi-structured interview guide which was tested and adapted during fieldwork. The interviewers were experienced interviewers (females) who had received specific training in qualitative methodology and interview techniques. After identifying potential participants, one of the researchers contacted general practitioners in order to confirm the patient’s eligibility. The same researcher phoned participants to schedule the interviews, which were conducted according to patient preferences (at private home or in their health centre), in the native language of the participants (Spanish or Catalan) and lasted approximately 1 h. The participants were provided with oral and written information about the study and they signed informed consent prior to the interview. In some cases relatives were present. The interviews were recorded in digital audio format and were transcribed verbatim. Transcripts were not returned to the participants.

Three researchers conducted a thematic content analysis [18]. Firstly, a code tree based on the general objectives of the study and the fieldwork data was created. This code tree was tested, agreed among analysts and modified in accordance with the new findings during analysis. The interviews were coded with the support of the Atlas.ti software. To verify the usefulness of the code tree and the validity of the process, two independent analysts double coded 8 interviews. After the inductive analysis procedures described above, codes were grouped into the categories proposed in the Lazarus y Folkman stress coping model [7, 19], a conceptual framework that has been used to understand stressful life events, adequate for our research as we consider the cancer diagnostic as a potential stressful factor. Table 2 provides an overall representation of the coping strategies obtained. Strategies are categorized as problem or emotion-centred, with emphasis on coping differences between the periods of illness and survival.

Social relationships are essential in coping with cancer [20], as well as other social determinants regardless of gender, age or cultural environment. However, due to its importance and breadth of this sub-theme, we have decided to address it in future work.

This study obtained the approval of the Majorca Primary Care Research Committee (nº PI11/12) and of the Balearic Islands Ethical Committee (IB3367).

The coping strategies during the disease originate from stressful experiences at the time of diagnosis or of treatments such as surgery or chemotherapy. Table 3 shows the quotations for this section.

Survival in cancer begins when the person is medically considered disease free with minimal chances of recurrence. The people interviewed do not talk so much about facing survival, a positive event that mitigates anxiety, but about how they cope with medical follow-ups, sequelae and, mainly, uncertainty and worry about a possible relapse. See Table 4 for quotations.

Coping models are not used in isolation and opposing attitudes coexist [21]. Paradoxical examples include participants who stress a fighting spirit and then explain that they resigned themselves, and men who emphasize their self-sufficiency when facing challenges, while explaining the care received from people around them. These contradictions encompass human vulnerability and interdependence as the universal framework of life experience, particularly during severe illness [22].

The links between different strategies point to coping patterns. For instance, during illness and survival some people use confrontational strategies, accessing their willpower and attempting to understand the disease. These interviewees describe survival by means of life-transforming changes, stressing lifestyle improvements. In contrast, other participants report more avoiding or accommodative strategies.

Sociocultural determinants such as gender, age and the social pressure of positive thinking might help explain certain coping mechanisms. Considering gender as a determinant of coping, women and men use similar strategies when facing cancer and the challenges of survival. However, only men’s discourses were associated with denial of discomfort, self-sufficiency, and pride in having defeated the disease and presenting themselves as cancer experts who help other sufferers. In contrast, while emphasizing positive feelings such as optimism, women tend to acknowledge and address negative feelings such as anger, wish to give up, need for solitude and the pain derived from loneliness. This is consistent with other studies, which indicate higher levels of anxiety in women, possibly because they express distress more freely than men [23]. These results show that the discourses reproduce gender stereotypes typical of patriarchal societies: male gender, associated with denial of interdependence and showing self-sufficiency; and female gender, in touch with their own emotions and open to acknowledge vulnerabilities and limitations [22]. In any case, it has been observed that both men and women could benefit from strong social networks [24].

Another finding is generational differences in coping. Older participants lean toward acceptance, the importance of daily routines and trying to keep going and improving lifestyles. Although only 7 interviewees were under 65 years of age, we identified common elements in their discourse, for instance more confrontational strategies, such as understanding the disease or finding a good side to cancer that has changed their perspective on life [25]. In this transformation, diet, exercise, psychotherapy and alternative therapies play a very important role. Younger people with cancer are more anxious and they develop less effective coping strategies than older people [26]. These differences might be explained by the severity of the disease, the treatment received or the longer life expectancy under the risk of a new cancer. We hypothesise that socio-historical conditioning factors (transition towards neoliberal economic models and their effects on work, lifestyles and subjectivity) might explain the differences in their discourses [27]. It would be necessary to investigate this aspect in future research.

Regarding emotion-centred strategies, we should underscore the scarce mention and low value attributed to negative feelings. In contrast, the insistence on staying positive is ubiquitous [6, 28, 29]. During survival, the attempts to feel lucky prevail, clouding negative feelings such as fear of relapse, which is not commonly directly addressed at this stage. Notably, the scientific literature also views this positivity favourably in relation to successful coping [30, 31]. However, censorship of negative feelings can be problematic, because they might promote adaptation to the new situation and seeking support from others. In addition, being overly optimistic and systematically dismissing the painful reality can be as harmful as negative feelings and pessimism. We consider more appropriate understanding that negative and positive feelings are contingent and dependent on the context. However, the literature hardly contains works that acknowledge the role of negativity [32]. Contesting the hegemony of positive thinking is crucial, since generally its historical and cultural conditioning factors are not taken into account. The encouragement of this type of mindset is relatively recent and probably stems from the business world of the 80 s [27] and then percolated into what is now known as positive psychology [33‐35], recognizable in many of the referenced studies and interviewees’ discourses. This could partly explain the absence or rejection of negative feelings and the low presence of material determinants of coping, such as working conditions and financial situation. However, the participants did not systematically and passively reproduce this positive mindset, critical perspectives also emerged, as reported in relation to gender coping differences and when some participants rejected qualifying themselves as survivors [36, 37].

Some strengths of the study are: 1) We achieved a heterogeneous sample of participants obtained directly through the cancer registry, with specific inclusion criteria. 2) We carried out very open semi-structured interviews that were adapted to the settings, languages, agendas, and paces of the participants to facilitate their expression of emotions and narratives.

The interviewers were women, since it was thought that this would facilitate the participation and expression of the women interviewed. Regarding the men interviewed, it was assessed that they would have less resistance to elaborate their discourses with women interviewers, who also presented themselves as health workers [38].

Most participants of this study are older than 65 years, which could suggest that the results are only transferable to this age group. However, we have detected common patterns in younger participants, which indicates that saturation has been reached in the coping modes typical of these ages. Furthermore, we have formulated the hypothesis of a possible generational divergence.

Another limitation of this study is the selection of one type (colorectal) of cancer and the possibility that the results would only relate to experiences with this disease. However, the analysis has not focused on strategies that singularly address the particularities of this cancer and its treatment [39].

One could question the use of Lazarus y Folkman stress coping model, to establish the categories of analysis in this qualitative study. Although the categorization according to this model had not been initially planned, the results of the coding of the interviews showed its adequacy and coherence with our findings. This could be attributed to the fact that is a model used to understand stressful life events like cancer diagnosis.