Availability barriers

Availability refers to the health services that patients who request them can effectively access, which involves the existence of the infrastructure, equipment, supplies, information, and human resources capable of producing the service.^15,16 In In this sense, the informants express a permanent concern towards the health system, since the commune to which they belong does not have services available to be diagnosed and treated for cancer in a comprehensive manner. For this reason, people are referred to reference centers at the regional and national level, in order to comply with the GES, and with deadlines that vary for each type of cancer. ⁹ This aspect of the health system, is described by patients and their caregivers as a structural barrier, and they mainly emphasize the lack of human resources specialized in oncological care at the Vallenar provincial hospital:

Here in the commune, unfortunately We do not have the treatment service, here the most that can be done is diagnostic confirmation and beyond that, referrals to the programs that are, either in Copiapó, which is our referral network (E6).

Over the last few decades, Chile has been strengthening its public network of oncology providers, improving its infrastructure, and contributing to the development of specialized care centers, a strategy that at an international level has been considered relevant compared to the countries of the Organization for Cancer. Economic Cooperation and Development (OECD). In addition, it has sought to make resources more efficient, and formed this care network to facilitate coordination between professionals specializing in oncology. ¹⁷ However, it is still insufficient in infrastructure and specialized equipment, to which is added the deficit of doctors and radiotherapists when contrasting with other countries in Latin America and the world. ¹⁸ Added to this, inequality in the distribution of resources is observed in the concentration of specialists in the large urban regions of the country, leaving more extreme regions with low availability of oncological services. ^9,10

Another aspect mentioned as a barrier to availability points to geographical inequity (place and space), ¹⁹ because in the place where the informants live, they do not have specialized oncological services, compared to other areas of the country. This situation is very important for patients, especially due to the deteriorated physical condition and fragility, which occurs as a side effect of chemotherapy or radiotherapy treatment:

Here in Vallenar itself there should be a place where people can be treated, and not have to go out. To be able to go for an exam, because when you come out of your chemo you don't look well (E5).

Being a migrant due to cancer implies having to move from their places of origin to a place that receives them, under the condition of accessing diagnosis, treatment and/or follow-up. In most cases, treatment is associated with pain conditions, physical changes, and severe stress, which contributes to patients considering cancer as a complex and terrifying experience, above all, difficult to cope with away from their customs. and significant places.²⁰

In the context of the pandemic, the deficit of health professionals, especially doctors and nurses, reached critical levels, especially in remote regions and areas, which adds to the lack of specialists and subspecialists, already mentioned. The global literature agrees that remote areas have limitations in the care of patients diagnosed with cancer, and that the existence of low-complexity oncology facilities in these areas does not necessarily solve universal coverage. This is because these facilities may be geographically accessible, but they do not have the capacity to deliver all oncological services and meet people's expectations. That is, it is possible to resolve geographical restrictions with low complexity centers, but cancer patients will always have to resort to higher complexity centers. ^21-23

Accessibility barriers

Accessibility is associated with physical aspects such as distance, connectivity, and transportation time; organizational/administrative, related to administrative requirements for care, and with the modality to obtain hours and schedules of care, and financial; related to transportation costs, out-of-pocket expenses and loss of earnings at work. ^15,16

The informants considered that the waiting times to obtain test results and obtain care hours in the suspicion phase are too long, which can delay the start of treatment. This negative perception is associated with the urgency of confirming or not, the diagnosis of cancer, which is why most patients opt for the private system to quickly escape the uncertainty that this causes:

Patients see themselves in the need to access private care, especially so that the results of examinations are more immediate, and thus begin treatment as soon as possible. Likewise, they mention that waiting times are still long, mammography results more or less at least a month, and biopsy as was still takes, much more than 10 days for the biopsy in Antofagasta (E1).

This sense of urgency described by the informants is related in the literature to the negative representation of cancer as a severe disease, in which people associate it with death, pain, the impact of the treatment on the body, and suffering. In addition, to the experiences of having known, or lived with people who became ill and died from cancer. ²⁴

During the pandemic, the informants indicated a feeling of abandonment by the health system due to the difficulty of continuing with their usual treatment:

I took almost two months for care, when I was having my chemo every 21 days, there My “whole system was late (E5). My mother had a COVID test to enter the operation, and that test showed that she was positive for COVID, therefore her operation was delayed, and we had to wait for them to call her again when her quarantine ended (E2).

According to Cuadrado, “the pandemic overloaded the Chilean health system, and decreased access to oncological services”. ^{25, p.8)} This coincides with the global literature that describes that health services during the COVID-19 pandemic fell abruptly and precipitously, especially in chronic and severe diseases. Despite efforts to seek alternatives, such as prioritization protocols or telemedicine services, difficulties in accessing care still occurred. Based on this, the pandemic favored the inequality that already existed in access to cancer diagnosis and treatment. Problem that is mainly related to the availability of a base in health services, for the delivery of services to this type of patients, ²⁶ and the deficit of promotional and preventive actions to educate the community about healthy lifestyles and preventive examinations. ²⁷

Psychosocial barriers

According to Vicente and López-Guillén, “psychosocial factors are personal conditions, the relational environment and the work environment, which act on the patient's motivation and attitude as conditioning factors in health and illness”. ^{28, p.55)}

In relation to this point, there is a coincidence among the informants in their low level of self-care, since the majority do not have health self-care routines, and they go to the doctor only when they present symptoms or signs in their body. This described by them as; the appearance of “a little bean” or “a little ball.” In this regard, the role of the family in seeking specialized help has been fundamental:

I felt a small bean on my breast, and that alerted me, and I went for a mammogram (E1). My mother told us that she felt like a ball in her left breast, and we told her that it was better to have a mammogram, because she had not had one in 2020 (E2). When she had an illness, she was already about to die, she had just gone to the doctor, well like everyone else (E8).

This is consistent with Coutinho et al. ²⁹⁾ who describe that the motivation for the first consultation of cancer patients was to present a symptom. It also mentions that low adherence to preventive examinations is directly related to low educational levels, and to people without a family history of cancer. Low health literacy does not allow people to assimilate the severity or importance of undergoing routine examinations, a condition that influences high mortality rates from the disease in these groups. ^29,30

The importance of access to preventive programs is one of the most effective public health measures to reduce mortality rates. However, a first step is to educate and raise awareness among the population to adopt self-care measures, and thus avoid the economic and social burden that cancer treatment means for families and the health system. ^31,32

Bureaucratic barriers

Bureaucratic barriers in the health system correspond, according to Rodríguez et al., “to the set of technical-administrative strategies that are interposed to deny, delay or not provide services to its members”. ^{33, p.1948)} In the health system These can generate delays in diagnosis, affect adherence to treatment and patient recovery. The informants describe situations such as the processing to obtain medical licenses, difficulties in obtaining medical appointments, and obtaining tickets to travel outside the commune:

We had some problems getting those licenses because we are patients of Vallenar, and we are treated at Copiapó. (…) sometimes the terms of my license did not coincide with a checkup with the oncologist, so I had to look for a doctor here so he could give me my license (E1).

Bureaucratic barriers have been described in other studies on cancer patients and are usually associated with problems in the design of care processes, poor administrative practices, lack of knowledge on the part of officials about the current regulatory framework, and lack of knowledge of users about the functioning of the health system. The latter is a critical point, considering that it prevents people from exercising their legitimate right to health. ^34,35

Cancer is a disease that involves the possibility of anxious and depressive states, which reduces the ability of patients to adequately cope with the long process of diagnosis and treatment. ³⁶ Patients face the physical and emotional burden that the disease entails, so the management of health processes must be efficient and comprehensive to promote timely care and recovery.

According to Arrivilla et al., ³⁷ the health system is associated with bureaucratic itineraries in which care is not determined by people's needs and medical assessment, but by compliance with administrative and financial control regulations. Co-payments, moderation fees, delays in assigning appointments, authorizations for treatments and surgeries, among other procedures, become bureaucratic barriers that affect the opportunity, quality, and comprehensiveness of care. Consequently, it generates feelings of dissatisfaction and abandonment in the patient, while for doctors, these administrative problems are obstacles imposed by the system, in which bureaucratic issues prevail over the technical criteria of specialists. ³⁸

Facilitators of social support networks

Support networks are understood as a protective factor in health, in this sense, social support emphasizes the conservation of the social relationships you have in your network. The network contributes with emotional support (affection), instrumental support (having direct help), and informational support (providing advice or guidance for solving problems)³⁹ In this sense, the relatives of the informants mention that have actively participated in the decision to seek medical help for suspected cancer:

In the case of the little bean on her breast, we alerted her, and told her to go (E2).

On the other hand, the institutional oncological care network is a fundamental part of support for the entire family; however, the informants consider that psychological support has been late:

Psychological help should be at the time of receiving the diagnosis, when they tell you, that's where you're having trouble, imagine if you have a weak mind and my grandchildren and husband were affected, then it should be included in the family environment (E4).

According to Forgiony et al., the diagnosis of cancer begins a family crisis, in which routines, jobs, relationships, and roles are altered, which requires an adaptation process that will vary depending on the abilities and family skills. In this sense, for the patient; “The family can be both a generator of fear and uncertainty in the face of forecasts, and a source of support that accompanies and strengthens these changes” ^{40, p. 488)} This exposes the need for specialized psychological intervention throughout the therapeutic trajectory. Which should include development of skills to cope with stress, family education and management of spirituality. ⁴¹

The reviewed literature highlights the dimension of patient support and care, considering it essential to develop skills for hospital staff to recognize and be sensitive to the patients' feelings and emotional needs. Along with this, provide immediate care to meet their physical and psychological needs, while the medical staff has a calming attitude regarding what the patient feels. ⁴²

Another important social support network is the relationship and communication that is generated between the patients themselves, because they group and organize to solve problems related to coverage, and gaps in healthcare functioning:

We did the group with the girls, we are in communication, hey did this reach you? How long did it take you? We ourselves began to move on that side, so there I think it was faster, because if someone said call that number, because there they are going to give you information, one would call that number (E3).

Self-help groups fulfill fundamental functions in emotional, instrumental, and informational support ³⁹ given that by being connected with other cancer patients, bureaucratic nodes are better resolved.

In relation to the loss of social roles due to the disease, the informants mention their concern about stopping working and their productive role:

An important problem is not being able to work, although I worked independently, that has affected me calmly ( a lot) emotionally, not having sustenance. My son was still at university, finishing his semester of medicine and that still affected me, because he required expenses for rent, transportation, although he had all his scholarships, but still. That really affected me a lot, not being able to contribute to him, apart from the conditions I was in, so I couldn't go out to work, so that's what affected me the most (E5).

Having a support network throughout life for any person is essential; it contributes to the satisfaction of human needs in the psychosocial sphere. This becomes more important when people cannot satisfy some needs in the biological or psychosocial sphere by themselves. Therefore, patients place great value on the support they receive from their families, friends, and community. ⁴⁰

Facilitators in prevention strategies

Promotion is the strategy that provides communities with the necessary means to improve their health, and exercise greater control over it, which involves promoting healthy lifestyles and reducing the precursors of disease. In this sense, what health promotion seeks is to reduce the problems that favor the development of the disease through integrative proposals for health promotion and disease prevention. ⁴³

Regarding the above, prevention strategies oversee primary health and are aimed at communities, promoting healthy lifestyles and with the aim of preventing people from getting sick. At this point, the informants mention that there is weak awareness regarding the prevention of the disease, and that it is necessary to strengthen education and information actions that contribute to reducing the incidence of this pathology:

I believe that, although they strongly promote getting a mammogram, but it is on the date that the disease is commemorated, I feel that there should also be more information regarding women who have cancer with their family members, with their offspring, because these people or in my case, me and my sisters and cousins are more likely to acquire this disease. Therefore, I feel that the age at which the examination is performed should be lower, in order to avoid future cancer diseases (E2).

Rodríguez et al. ⁴⁴⁾ describe a high rate of abstention from mammography and Pap smear exams in Chile, for detection of breast and uterine cancer respectively. In this aspect, primary care plays a fundamental role in the healthy health practices of patients, since, through health education, greater awareness of healthy behaviors such as maintaining physical activity and healthy eating is generated. In addition to reducing alcohol and tobacco consumption, considered essential to reduce the incidence of cancer. ⁴⁵ In this regard, informed communities generate greater preventive awareness, so they are more likely to access treatment on time, given that for some, pain is the only symptom that motivates seeking help. ^46,47

Limitations of the study

The main limitation of the study was the long times to access the sample, since there were many bureaucratic barriers that slowed down access to the study subjects and their families.