Meanings of quality of life held by patients with colorectal cancer in the context of chemotherapy1

OBJECTIVE: this study's aim was to interpret the meanings assigned to quality of life by patients with colorectal cancer undergoing chemotherapy. METHOD: the ethnographic method and the medical anthropology theoretical framework were used. Data were collected through semi-structured interviews and participant observations with 16 men and women aged from 43 to 75 years old undergoing chemotherapy in a university hospital. RESULTS: the meanings and senses describe biographical ruptures, loss of normality of life, personal and social suffering, and the need to respond to chemotherapy's side effects; chemotherapy is seen as a transitional stage for a cure. Quality of life is considered unsatisfactory because the treatment imposes personal and social limitations and QoL is linked to resuming normal life. CONCLUSIONS: the meanings show the importance of considering sociocultural aspects in the conceptualization and assessment of quality of life.


Introduction
Cancer populates the social imaginary with representations of suffering, helplessness, loss and finitude. Even with increased survival rates for cancer patients, there are still challenges to demystifying beliefs about the disease and its treatment (1) .
Cancer is the second main cause of morbidity and mortality for the Brazilian and world populations, thus constitutes a public health problem. Estimates of the José Alencar Gomes da Silva National Institute of Cancer (INCA) indicate there will be 576,000 new cases of cancer in Brazil for 2014/2015. Of these, 33,000 will be colorectal cancer (CRC), which equally affects both sexes among individuals over 50 years of age (2) .
In most cases, surgery is the first stage of treatment and results in changes in the patient's body image and social activities due to a temporary or permanent stoma (4) .
Chemotherapy is the second therapeutic option. It consists of the use of anti-neoplastic drugs with systemic action applied through various routes of administration to destroy tumor cells or alleviate symptoms. In the case of CRC, chemotherapy is a neo-adjuvant, adjuvant and/or palliative treatment (5) .
Monoclonal antibodies with the ability to recognize and bind to specific tumor antigens are also employed, triggering immunological responses capable of sparing normal cells and reducing the adverse effects arising from the toxicity of conventional anti-neoplastic drugs (6) .
Chemotherapy is also relevant in the treatment of CRC, creating an expectation and a hope for a cure, but the belief still persists that this is the worst of the antineoplastic treatments due to its adverse reactions (6)(7) .
Health-related quality of life, or simply quality of life (QoL), in the presence of chronic conditions such as CRC is a growing concern among health workers who seek to orient decision-making concerning care interventions (8) .
The World Health Organization defines QoL as the This concept comprises aspects concerning physical and psychological health, level of functionality, sociability, and relationships with environmental characteristics.
There is agreement among workers that this concept is subjective, multidimensional and includes elements of both positive and/or negative assessments (9) .z In recent years, studies (10)(11) assessed the QoL of CRC patients using different measures such as the Functional Assessment of Cancer Therapy-Colorectal (FACT-C). Some studies report satisfactory QoL, while others report unsatisfactory QoL. The authors of one integrative review (10) observed an association between the QoL of individuals with CRC with physical exercise, follow-up with exams, psychosocial assessment, and aspects inherent to people. A cancer diagnosis and its treatment affect various domains, but studies do not report strong evidence. The authors of a systematic review (12) that was concluded five years after surgery, reports that individuals experienced poor physical QoL, obtained worse scores for depression, and reported intestinal problems and anxiety due to the possibility of recurrence.
We share a criticism (13) that when applying instruments to measure QoL, one dissociates the consequences of the disease and treatment, the implications of economic aspects, social and family life, social roles and prospects for the future. Hence, one needs to understand and interpret the sociocultural dimension of QoL (14) .

Method
The study was developed according to the ethnographic methodology and medical anthropology.  the perspective of culture as a symbolic system, health and disease are a continuum of events, and people understand these events through this system (15) .

Ethnography deals with scientific descriptions
aiming to interpret the meanings of reports and actions of CRC patients undergoing chemotherapy by integrating them with the cultural context (14)(15) .  (14) .
To ensure the study's accuracy, engagement with the study participants was extended. Individuals were included in the study regardless of sex, age, socioeconomic or educational status in order to obtain different perspectives. Many observations and interviews were performed using the same questions at different points in time. The participants' social and clinical characteristics were considered in the analysis and interpretation of data and discussed among the researchers (17) .
The participants included four men and 12 women,

Results and discussion
The meanings assigned to the disease, chemotherapy and QoL The logic is to fight against disease and the treatment's adverse events, seeking strategies to avoid suffering (20) .
Patients expect to recover their individual bodies and social lives because they deem their bodies to be resilient and themselves able to maintain control over life. Despite the problems and disappointments with the treatments, these individuals are still able to expect that something good will happen to me (Helena, 60 years old). Hope gives them strength to keep fighting and to resume their life projects. Having hope is a cultural characteristic of humans and corresponds to the moral/ social expectation of never giving up (21) .
From the perspectives of the participants regarding the experience of having CRC, chemotherapy is a transitional step to healing. This process defines a process from disease to cure; an undefined period that accompanies the patient to a socially expected situation -having cancer and being cured (18) .
These meanings highlight what is valued and what needs to be done in daily life to survive, preserve self-esteem and a sense of normality (22) , which is common to the results reported by other qualitative studies addressing this topic (23)(24) .  (4,14) . This meaning is constructed in the relationships that exist among people, including personal judgments, regarding one's current life, experiences, and prospects for the future.

The meanings of QoL
It was difficult for the participants to talk about For Brazilian chronic patients, normality means to be healthy as they were before the disease developed and being able to play their social roles, especially work, social relationships, within the family and in relation to leisure (4) . This category is an attribute of health, which emphasizes disease as a justification for losing control over current life.
In the beginning, chemotherapy did not impede These meanings assigned to the disease and chemotherapy seem to be a moral experience (22) . By  (7,14) .
These meanings show that that participants experience unsatisfactory QoL due to the loss of control of life caused by the disease and by chemotherapy's side effects. They perceive that this therapy does not ensure a cure and that, at the end of the treatment, they remain uncertain of the future, despite all the suffering they morally experienced. The conceptual elements of QoL, from the perspective of patients, show the interrelationships of behaviors and human values with the social and disease contexts (8,13,21,25) .
These results highlight that QoL is a subjective concept dependent on various dimensions of life; it is dynamic, because it changes over time due to the progression of the disease, inclusion of new therapies, the patient's internal ability, changes of values and actions, and is essentially an individual judgment (8,13,24) .
In this manner, the use of theoreticalmethodological interpretative approaches, which focus on the sociocultural context, the situations experienced in the healthcare system, as well as the therapeutic actions and consequences, favor deepening the analysis and discussion of conceptual elements of QoL, during cancer treatment.
It is important to reflect on how to concretize the quality and quantity of conceptual elements of QoL. Quality cannot take the place of quantity, nor the reverse. Even though quantity is a type of quality, the contrary is not true. Instruments of QoL, in general, measure quantity and not quality (8) .
Considering the prevalence of CRC in Brazil, a lack of clinical response with the use of current therapies given high rates of unsatisfactory outcomes means other indicators are needed, in addition to QoL, to support the maintenance or prescription of treatments in different stages of the disease.
On the other hand, when considering the analysis of QoL among people with cancer, one needs to pay attention to the ethical aspects of results, because this assessment involves the lives of other people (8) .
The anthropological perspective ensured consistency of data and the respective analysis through fieldwork, participant observation, and in-depth interviews. These facilitated the proximity of researchers to situations experienced by the participants, as well as the construction of meanings of QoL (8) .