INDIVIDUALS LIVING WITH CANCER IN TURKEY AND THE COVID-19 PANDEMIC

: The aim of this study is to determine the problems faced by individuals living with cancer (ILCs) in accessing health services during the COVID-19 pandemic in Turkey. This qualitative study’s sample consisted of 18 volunteer interviewees from 10 cancer-related patient associations in Turkey. Research data were collected by semi-structured interview method. Data collection and analysis were carried out simultaneously. In the sessions where all researchers participated together, the data were coded with a common view, and main and sub-themes were determined. In the analysis of the data the inductive thematic analysis method was applied. Information was gathered under two main themes: compliance with the measures taken and access to health services. Lack of information about nutrition, physical activity, psychological problems, caused by the lockdown and social distance measures taken within the scope of the pandemic should be accepted as problems within the scope of the right of individuals to access health, and additional programs should be prepared to minimize these. Cancer types should be considered in delaying diagnosis, treatment, and controls related to cancer, so that patients are not harmed at least or at all. It is important to ensure that patients do not hesitate to attend diagnosis, treatment, and controls with the anxiety of being infected with COVID-19, both in transportation to health facilities and in terms of preventing transmission in health facilities.


INDIVIDUALS LIVING WITH CANCER IN TURKEY AND THE COVID-19 PANDEMIC Introduction
States can limit access to health services by dedicating health manpower and resources to combat the pandemic and to prevent the spread of the disease. For example, some screenings have been stopped in many European countries (1). Within the scope of combating the COVID-19 pandemic in Turkey, many public hospitals have allocated their clinics and intensive care units to  Positive individuals according to the number of cases. Procedures that require patients to come to health facilities have been postponed as much as possible or spread over longer periods. If there is no urgent medical necessity, surgical interventions and the treatment or examinations to be performed are postponed. Moreover, it is stated that even in acute situations, individuals prefer not to go to health facilities with the fear of being infected (2). In these conditions, it is not difficult to predict that there are important problems in accessing health services for patients who need regular treatment and control services, who have chronic diseases, and who need home care.
For example, the problems in cancer patients' access to health services are constantly pointed out (1). Not ignoring these patient groups in the fight against the pandemic is a necessity in terms of the right to benefit from health services in accordance with justice and equity. Ethical guidelines emphasize this issue during pandemic periods (3).
According to the 2018 data, there is a total of 232,500 cancer patients in Turkey. Lung cancer ranks first with 16.5% among all cancer cases, and breast cancer ranks second with 10.6%(4). It has been pointed out that ILCs are among the more risky groups in terms of transmission and death risk in the COVID-19 pandemic due to the weakness of their immune systems and interruption of their treatment due to cancer and cancer treatments (5,6). It is stated that COVID-19 negatively affects every aspect of cancer-related health care delivery, including cancer prevention, cancer care and treatment (7). Recent work and projections suggest that delays in cancer treatment and diagnosis, indirect deaths from COVID-19 are likely to increase by several thousand in the coming years (8). In a study conducted in China, more than one-third of the participants reported facing barriers to their cancer treatments due to COVID-19-related conditions (8). Disruption in diagnosis and referral, disruptions and interruptions in reaching treatment and different treatment approaches, lack of communication between patients and health professionals can be listed as the problems faced by individuals living with cancer in this period (9). In a study examining the Twitter shares of ILCs during the pandemic period, it was found that individuals mostly talked about postponed diagnoses, cancellations, delayed treatments, and weakened immune systems. In the study, which found that the most prominent emotion in tweets was fear, the two most discussed cancers were lung and breast cancer (10). Determining how these patient groups, who are faced with such important risks, are affected by the measures taken within the scope of combating COVID-19, will provide important information about the measures to be taken within the scope of the ongoing COVID-19 pandemic and the issues to be considered in terms of pandemic measures to be taken in the future.
In this study, it was thought that the observations obtained by the associations related to ILCs, which are one of the important information and social support resources of ILCs during the CO-VID-19 pandemic period in Turkey, during the process of providing support to patients, will have an important role in determining the problems. This context is aimed to determine the problems caused by the measures taken during the CO-VID-19 pandemic period within the scope of the right of access to the health of ILCs through the eyes of the representatives of the associations. In this research, important information about the health and access to health problems experienced during the pandemic period was obtained from the interviewees, who are the representatives of the associations operating in ILCs.

Material and methods
The universe of this qualitative study consists of associations that carry out activities related to individuals living with Cancer (ILC) in Turkey, and the sample is composed of associations that are accessible on the internet. Interviews were held with the volunteers of the association who agre-ed to participate in the study. Research data were collected by semi-structured interview method. A pilot test was conducted with the question guide and the most appropriate time and content for the interview was determined. Open-ended questions were asked about the subject prepared by the researchers, which are not likely to cause any medical, social or psychological harm to the individuals, and the opinions of the interviewers were taken. After the preliminary information, an audio and video connection was established with the members of the association who wanted to participate in the meeting. At the beginning of the interview, the researcher was informed that the participant's voice recording would be taken and that it would only be used for data collection in the research. After reading the prepared informed consent text, they were asked if they wanted to continue the interview, and after obtaining consent, a voice recording was made. Each interviewee was interviewed once. No one other than the researcher and the interviewer took part in the interviews. Interviews were made between 01 th September 2020 and 01 th March 2021. The interviews were deciphered word for word by all the researchers. Data collection and analysis were carried out simultaneously. In the sessions where all researchers participated together, the data were coded with a common view, and main and sub-themes were determined. Each researcher examined all the interviews under the determining themes and reported by adding the determined sub-theme. These reports were re-examined by all the researchers and the final themes and sub-themes were formed. In the analysis of the data, the inductive thematic analysis method was applied. The data saturation was determined dynamically by post-interview analyzes and the study was terminated after the 18th interview as sufficient data saturation was reached.

Interviewers (I):
Eighteen interviewees from 10 associations in 6 different provinces participated in the study to support individuals living with cancer. Ten of the interviewees have received or are still receiving cancer treatment at some point in their lives. Relevant associations provide social and economic support to ILCs regarding screening, access to health services, information, education, accommodation, comfort in the health institution they stay in. Most of the interviewees are also managers in their associations. The information obtained from the interviews was gathered under two main themes: compliance with the measures taken and access to health services.

Theme 1. Compliance with the Measures Taken
According to the interviewees, the COVID-19 pandemic has placed additional concerns on ILCs. Some of the interviewees stated that ILCs tend to comply with the measures with the desire to get rid of these concerns as soon as possible and return to their old lives. (…) This naturally disrupts the patient's psychology. And they say that they want us to close as soon as possible so that I can be treated as it should be and return to my old life" (I 1). According to the interviewees, since ILCs had to live before the pandemic with measures similar to the measures taken to stay at home and physical distance, it was not difficult to comply with the measures taken (6 interviewers).

Psychology, Nutrition, Movement
Some of the interviewees (6 interviewees) stated that lockdown and physical distance measures negatively affect the psychology of ILCs. "But the patients became even more socially isolated and depressed." (I 5). Some interviewees also stated that the measures taken limit ILCs to receive support from their relatives in their treatment. "Because this disease is not something that can be overcome alone (…)but right now, there is no support from your family, no friends, you are alone." (I 1).
Some interviewees think that the measures taken affect the eating habits of ILCs negatively. "Seriously, there was some weight gain, so I did. … I am very depressed because it spoils my standard of living." (I 9). The interviewees think that the inactivity caused by the measures taken will cause some physical discomfort in ILCs. "The lack of physical activity is also in terms of health, which will likely pose a problem in the future. " (I 6). One of the interviewees stated that individuals with poorer housing conditions were affected more negatively by the inactivity caused by the closure. "Because not everyone has the means, that is, except for those living in a house with a garden or in coastal areas, our patients could not walk." (I 17). Another interviewee pointed out that because they are under a stricter curfew, ILCs over a certain age (+65) are more negatively affected by inactivity than other ILCs. "Over a certain age is affected much more, also on weekdays because they only have the opportunity to go out for three hours." (I 6).

Lack of information about measures
Some interviewees (5 interviewees) pointed out that sudden decisions about some measures and lack of information cause adverse effects on patients. "…We were suddenly faced with a curfew, without prior notice and preparation... Precautions should have been shared with the community in advance. Especially, as you know, over 65 years old, they took the public transportation (they woke up in the morning, they will go to the hospital), the subway, their cards were cancelled. Of course, this was a very dire situation for a patient receiving radiotherapy."( I 11). The interviewees tried to explain this situation with close expressions.

Theme 2. Access to Diagnosis and Treatment
From the statements of the interviewees, it is understood that important problems were encountered in accessing diagnosis and treatment in the context of access to health services during the pandemic period. While explaining the reasons for this situation, the interviewees drew particular attention to three issues: State's slowing down, stopping or delaying diagnosis and treatment services within the scope of Pandemic measures: The interviewees stated that the declaration of most of the hospitals as pandemic hospitals, the postponement of polyclinic services, and the inability to carry out screenings after the onset of the pandemic prevented ILCs from accessing health services. "Even though he tries to make an appointment, he cannot be taken from hospitals easily anyway." (I 10).
Patients' reluctance to go to hospitals: According to the interviewees, even though the hospitals were in a position to provide service, some ILCs were afraid of going to the hospitals for screening, treatment, check-ups and to determine if there was a recurrence due to the fear of being infected in the hospital (6 interviewees). "If most people will have mammography, smear test, routine check-ups, colonoscopy, no one went to this at that time" (I 8), (Table 1). An interviewer, who is a physician, stated that patients do not come to the institutions even if they are present as an institution and physician to have the patient screened or tested. An interviewer stated that they also had hesitations about referring patients to institutions with the same concern. "You can't direct people, let's According to the interviewees, these reservations will decrease with the existence of hospitals where COVID-19 positive patients, which they describe as "covid-free", "clean hospital", are not cared for, the establishment of covid-free areas in hospitals, or an oncology special branch hospital in every province where individuals living with cancer can safely go (5 interviewees) ( Table 2).

Transportation
The majority of the interviewees stated that the lack of safe transportation to hospitals is a significant obstacle for ILCs to access health services (14 interviewees). During the COVID-19 pandemic, the interviewees defined their physical transportation to the hospital, service unit, and doctor as "the most important problem", "difficulty", "the most sought-after issue", "the greatest difficulty" and "the greatest suffering". "The biggest suffering of patients on the side of oncology, the biggest problem there was transportation. Transportation between hospital and home…" (I 3). Interviewees stated that ILCs, who have to receive health services both in the city they live in and in other cities, have difficulties due to transportation.

Transportation to City Hospitals
According to the interviewees, most of the patients did not go to the hospitals for treatment or check-ups because they were afraid of using public transportation, or postponed their visits, and had difficulty choosing between taking the risk of contagion while going for treatment or not going to the treatment in order not to take this risk.  It has been suggested that malnutrition in cancer leads to increased treatment-induced toxicity, decreased response to treatment and quality of life, and an overall worse prognosis (11). In our study, the interviewees drew attention to the uneasiness caused by weight gain by pointing out the negative effects of overnutrition rather than a nutritional deficiency. Studies that draw attention to overcoming these problems emphasize the importance of providing support to ILCs during their stay at home. During the pandemic period, a group of clinical dieticians and nutritionists in Lombardy, Italy, provided information to cancer patients about their diet through telephone counseling (11).
In a systematic review made from meta-analyses in 2018, it was found that physical activity has a strong role in reducing the risk of 9 cancers(12). In individuals living with cancer, physical activity is important in terms of reducing the toxicity of the treatment, preventing chronic complications, and reducing mortality (13). In our research, it was pointed out that in addition to the lack of physical activity caused by staying at home, unfavorable housing conditions and stricter restrictions on curfews for some age groups (+65) deepen this problem. In a study conducted in Australia; It is argued that expert exercise physiotherapists can continue their face-to-face exercise treatments with the telehealth method and home exercises (13). The large-scale application of virtual and telemedicine is stated to be one of the rapidly implemented interventions to ensure continuity of care (2).
Staying at home and social distancing measures cause significant psychological problems in ILCs. In a study examining 6213 cancer patients during the COVID-19 pandemic in China, 23.4% of the participants had depression, 17.7% anxiety, 9.3% post-traumatic stress disorder, 13.5% hostility (anger, hostility) symptoms were detected. In our research, the interviewees emphasized that ILCs do not meet with their families and relatives within the scope of the measures taken during the pandemic period, as well as the deterioration in their access to treatment, their psychologies are adversely affected, and they need help in this sense. It is important for sustainability that such support, which is generally provided by telephone or the internet, is made available to the public.

Lack of information about measures
In the ethical guidelines regarding the pandemic, it is emphasized that individuals should be given clear and consistent information about the reasons for the measures taken, the financial and social support to be provided due to the measures, and what is expected from them. In this context, it is recommended to establish centers where official and regular information can be provided and concerns can be conveyed (3). Providing such information will facilitate access to health services for ILCs who have treatment or control. Asked by one of the interviewees on this subject, "So what happens when we are surprised first, when he first comes? What are we gonna do?" (I 9) should be explained together with the precautions.

Theme 2. Access to Diagnosis and Treatment
In the COVID-19 pandemic, some studies point to important problems in cancer diagnosis and access to treatment. Overall participation in the radiotherapy department decreased by 28% (14). Low-dose CT has diagnostic value in lung cancer screening, and early detection of suspicious nodules reduces mortality by 20%. In a study conducted in the USA, low-dose CT performed during the COVID-19 pandemic period showed a significant decrease in both the total monthly average and the monthly number of new patients (15). In addition, in a study conducted in the UK at the beginning of the pandemic period, it was determined that there was a 58% reduction in endoscopic cancer detection, and this decrease was the least in pancreatobiliary cancer with 19% and the most in colorectal cancer with 72% (16). It was also found that there was a 28% decrease in breast cancer diagnostic services in the UK (17). Head and neck cancers are also one of the cancer types where early diagnosis is important. According to a study conducted in Spain, as a result of delayed diagnosis services, 3 times more advanced head and neck cancer cases were detected in April 2020 compared to the same period of the previous year (18). In a study conducted with 609 adult breast cancer patients reached through social media in the USA, it was determined that 44% of the participants experienced a delay in their treatment (19).
It is predicted that disrupted or delayed health services will cause an increase in cancer incidences in the coming years (20). In this study, the interviewees pointed out that there are delays in diagnosis and treatment and that the delays caused by delays will bring about much more serious health problems in the future. Information about the cause of disruptions and delays in our research was expressed by the interviewees under three main headings.

States slows down, stops, or postpones diagnosis and treatment services within the scope of pandemic measures
The main problem with such measures is that the administration prevents access to the service in a planned manner. Public screening programs, such as breast and cervical cancers, have been postponed or stopped in over 40% of countries (14). According to the known transmission routes of CO-VID-19, it can be argued that keeping individuals away from health institutions is necessary in order not to be infected by individuals who come to the institution and not to spread the virus to the community after being infected, and that such measures will reduce the pressure on the health system. However, such information does not suffice to justify that these measures limit the rights of individuals for the sake of public health ethics and the best interests of the public or other individuals. In addition, the same results will not be achieved with the lesser measures than these measures, and the balance between the benefits to be provided by these measures and the harm that individuals will suffer should be at an explainable level. Attention is drawn to some cancer diagnoses and treatments that should not be delayed or postponed. For example, in the management of gynecological cancers, many guidelines have been published for the adaptation of health systems to the conditions of the COVID-19 pandemic. According to the published guideline for the surgical procedures of gynecological cancers, the treatment of pre-invasive cervical cancer lesions can be delayed up to 6-12 months, while standard treatment is advocated for invasive initial lesions. It was stated that the first lesions of vulva tumors should not be delayed. In general, it has been argued that telehealth practice is important in terms of patients' conditions, follow-up, and management of treatments, and that multidisciplinary cancer councils can meet online and take relevant decisions (21).
On the other hand, according to the recommendations of the American College of Surgeons, it was argued that colon cancers, stenting in esophageal cancer, and semi-elective operations in most gynecological cancers should continue (22). Kutikov et al., in their article on cancer care and treatment in the days of COVID-19, argued that solid tumors such as lung and pancreatic cancer and some hematological malignancies such as acute leukemia require urgent diagnosis and treatment. However, in the same article, it was argued that early-stage types of other common cancers such as breast, prostate, cervix, and non-melanoma skin cancer do not require immediate treatment (23). The Canadian Society of Breast Imaging/Canadian Radiologists Association advocated that breast cancer screenings should not be postponed with the guideline for breast cancer screening at the beginning of the pandemic(24).

2.2.
Even if the hospitals are in a position to provide service, the patients' refrain from going to the hospitals Patients undergoing cancer treatment and people who have had cancer constitute a risky group in the COVID-19 pandemic due to the treatment they receive and their immunosuppressive states (5,(25)(26)(27)(28)(29). Some studies justify ILCs' reluctance to go to health facilities during the CO-VID-19 pandemic. According to a study showing that patients receiving cancer treatment in the USA have an increased need for intubation after being diagnosed with COVID-19, it was found that in 334 cancer-diagnosed patients diagnosed with COVID-19, the need for intubation was higher in the 66-80 age group, and the mortality was higher in all patients under 50 years of age with a cancer diagnosis (30). According to a study conducted in China, mortality from COVID-19 after a possible transmission in cancer patients is 10 times higher than in non-cancer patients (31). In a multicenter study conducted in Italy with a total of 423 participants, patients who underwent surgery for breast cancer before quarantine (before March 2020) and during the quarantine period (March-May 2020) were examined and a high level of lymph node involvement was detected in the quarantine group (32). In this context, it is pointed out that continuous access to care should be optimized in the long term to ensure the safe delivery of treatment for both acute and chronic medical conditions (2).
In this context, it is important to establish an agenda regarding the access of ILCs to health services in a safe environment. For example, it can be discussed whether the approach suggested by the interviewees participating in our research is possible, that the establishment of covid-free hospitals or the establishment of covid-free areas in hospitals, will reduce this reservation. The interviewees think that with such structuring in the context of their observations in the field and the information received from the patients, it will be easier for ILCs to go to health institutions. As one interviewee suggested, if it would be more beneficial to take basic preventive measures in all hospitals instead of clean hospitals, it is also important to take the necessary precautions and share the information with the public in this regard. It is stressed that the difficulties of clearly defining the 'COVID-free' area need to be acknowledged when considering subclinical or asymptomatic cases of COVID-19.
In light of the potential for presymptomatic transmission and the existence of asymptomatic and atypical cases of COVID-19, it is stated that in regions with high incidence, it may be a precaution to assume that all patients are potentially in the incubation period of SARS-CoV-2, regardless of its presence. Recognizing the limitations of polymerase chain reaction sensitivity to identify SARS-CoV-2, further studies are needed to determine the role of universal microbiological screening for patients requiring regular health care contact. It is also noted that some centers have introduced such universal screening before planned surgeries (2). In the study conducted by Routy et al. in May 2020, they observed that 85% of the patients in the oncology service they followed continued their routine follow-ups with the telehealth method (33). In the same study, it is recommended that chemotherapy services should also be covid-free, that patients who will receive chemotherapy should be called before their arrival and their current status should be questioned in terms of COVID symptoms. In addition, it was emphasized that no patient's relatives should accompany the patient in terms of contamination during chemotherapy (33). It has also been argued that elective surgical procedures can be continued in covid-free hospitals, and that hospitalization should be kept as soon as possible (34). In a study conducted in Spain, it was argued that it is important for the continuity of the oncological programs of the covid-free services and hospitals. In a comparison between a group of breast cancer patients treated before the pandemic and breast cancer patients treated in a hospital free from COVID during the pandemic, it was observed that surgical procedures decreased by 30%, while no significant difference was observed in postoperative complications (35). In the article written by Restivo et al. on COVID-free hospitals, he recommended that the patients who will be treated in these hospitals be screened for COVID-19 48 hours before the surgical procedure, and the health personnel working there should be routinely screened for COVID-19, and argued that patients with a negative test should undergo surgical procedures here (36). These studies show the necessity of covid-free hospitals, which most of the interviewees drew attention to.

Transportation
Patients should be offered transportation solutions to address the concerns caused by public transportation. Some of the interviewees who participated in this research will reduce the inequality caused by the patients' inability to use transportation due to economic reasons, as well as the practices such as ensuring safe transportation of public institutions such as municipalities or health directorates to health institutions of ILCs in the provinces they are located. Similar measures should be taken for ILCs who have to travel from other cities for treatment.
When they need to stay out of the hospital during the diagnosis and treatment procedures due to the physiopathological and psychosocial effects of the disease, a safe accommodation environment should be provided during or after the pandemic period. Meeting this need will be an important supporter of the right to access health services for cancer patients, who have economic problems due to medicine, nutrition, hygiene, and measures to prevent secondary infections, which are important factors in the fight against cancer requiring good economic power.

Conclusion
Staying at home and social distance measures taken within the scope of combating the pandemic have caused problems in the healthy diet, physical activities, and psychology of ILCs. Postponement of health services, concerns about the risk of contamination, failure to ensure safe transportation of patients to hospitals, limited ILCs attendance to diagnosis, treatment, and check-ups. All these show that ILCs have significant problems in terms of access to health services during pandemic periods. The negativities in the housing and economic conditions of individuals deepen these problems. It is necessary to take measures to eliminate or minimize these problems, and to take into account the negative economic and housing conditions while taking these measures.
In this context the recommendation are: Necessary measures should be taken to minimize the damage to ILCs caused by inactivity, malnutrition, and psychological problems caused by measures such as being locked in the house and curfew. Establishing programs for the nutrition and inactivity problems of ILCs can be important steps in reducing the negative effects on the health of ILCs. Considering these programs as a part of the right to access to health, having content approved by health authorities, economic situation and housing conditions, and the burden brought on by the bans in these programs will reduce some inequalities that may arise despite the support programs.
Necessary measures should be taken to ensure safe access to health services for ILCs. In this context, curfews or other measures limiting freedom of movement should be provided for ILCs to access control, treatment, and diagnostic services, and timely, effective and adequate information should be provided about these.
The risks of patients with all chronic diseases affected by delays in diagnosis and treatment should be taken into account while taking the measures taken by the administration within the scope of the response to the pandemic, which will cause delay or delay in diagnosis and treatment. The issue of minimal or no harm caused by these measures must be considered.
Necessary measures should be taken in health institutions and organizations to minimize the concerns of infection that pose a concern for ILCs to access diagnosis and treatment services, and individuals should be provided with up-to-date effective information about the risks despite the precautions so that they can show more rational approaches in their dilemmas about whether or not to go to treatment.
When ILCs need to get service both in the city they live in and from another city, safe transportation to health institutions should be provided. If this is achieved, a significant portion of the concerns in accessing health services will be reduced.
Getting support from non-governmental organizations that carry out activities related to chronic diseases in identifying the problems caused by the measures taken during the pandemic periods regarding the right of chronic patients to access health services can provide important steps in solving the problems.

Disclosure
The author reports no conflicts of interest in this work.