key: cord-0869812-swag4cl1
authors: Mirlashari, Jila; Ebrahimpour, Fatemeh; Salisu, Waliu Jawula
title: War on two fronts: Experience of children with cancer and their family during COVID-19 pandemic in Iran
date: 2020-10-24
journal: J Pediatr Nurs
DOI: 10.1016/j.pedn.2020.10.024
sha: 116e2e844643813ef6334a74ef29bbf67de0adc2
doc_id: 869812
cord_uid: swag4cl1

INTRODUCTION: The COVID-19 pandemic affects all age groups and presents differently in children from adults. Children who contract the virus while suffering from cancer may face unique health challenges than their counterparts. This study aimed to investigate the perspectives of children with cancer and their family in this era of the COVID-19 pandemic. METHODS: In this qualitative study, a total of 21 participants were interviewed. They include five children, thirteen mothers, a father and three pediatric oncology nurses. The study setting was a Pediatric Hospital in Tehran, Iran. RESULTS: Three main themes were identified through thematic analysis. 1) Swinging on the path of fear to adaptation, 2) Left-alone at emotional distances, 3) Care system confusion, and decreased quality of care. CONCLUSIONS: The COVID-19 pandemic has burdened children living with cancer and their families in varying ways. Their experiences show a new insight on how to improve their quality of life during these difficult times.

In December 2019, COVID-19 was discovered in China and had since spread rapidly to many countries worldwide (She & Liu, 2020) . In Iran, early reports of the virus emerged from Qom province on February 19, 2020. Several people have since contracted the disease, leaving many others dead (Abdi, 2020) . COVID-19 is an acute pulmonary infection caused by a coronavirus. The disease manifests with various clinical presentations ranging from asymptomatic to respiratory failure that may require special care (Kotecha, 2020; Ruggiero, Romano, & Attinà, 2020) .

According to the recent literature, the COVID-19 pandemic affects all age groups, but its presentation is different in children from adults (She & Liu, 2020) . In a nationwide case series of 2143 pediatric patients with COVID-19 that reported to the Chinese Center for Disease Control and Prevention from January 16 to February 8, 2020,there were731 laboratory-approved samples and 1,412 suspected COVID-19 cases in children aged 2 to 13 years. Out of these, 90 patients were asymptomatic or had mild to moderate symptoms (Dong et al., 2020) .

Although COVID-19 is less common in children or may present with mild symptoms, adults with a weakened immune system due to chronic diseases such as cancer are at increased risk of suffering from the devastating effects of the virus (Saroha & Moulik, 2020 ).The first case of COVID-19 in children with cancer was identified on March 8, 2020, in Wuhan (China) (Chen et al., 2020) . A study published in April 2020 reported that nine children aged 2 to 10 years, were infected with COVID-19 in some pediatrics hospitals in Iran, including three children with leukemia and lymphoma (Rahimzadeh et al., 2020) . A study conducted in Italy reported that adolescents and young adults with cancer aged 15-21 years are at higher risk of the COVID-19 infection compared to their healthy counterparts (Casanova et al., 2020) .

The current study is part of a broader study among children with cancer who are receiving treatment at the Central Pediatrics Hospital in Tehran, Iran. During the data collection phase of the initial research, the COVID-19 pandemic had begun, thereby necessitating this investigation of the impact of the pandemic on children with cancer. To investigate how children living with cancer and their parents experienced the effect of COVID-19, we conducted this qualitative study using the thematic analysis approach in an open-ended way, consistent with Braun & Clarke (2006) . Thematic analysis is a method for identifying, analyzing, and reporting patterns (themes) within data (Braun & Clarke, 2006) .

All participants received treatment in one hospital (Central Pediatrics Hospital) in Tehran Province. Participants included children living with cancer, parents, and pediatric oncology nurses. It must be noted that the main participants were children and parents; however, references from the data to the pediatric oncology nurses necessitated interviews with them as well. All the children who participated received cancer treatment either as inpatients or outpatients. The pediatric oncology nurses who participated in the study worked in the inpatient ward.

Due to the recent social distancing and lockdown regulations, the participants in this study were interviewed through phone calls. Telephone interviews are widely used in qualitative research to conduct in-depth interviews in situations where face-to-face conversations are not possible (Saroha & Moulik, 2020) . Participants were selected using a purposive sampling technique. The sampling continued until sufficient knowledge about the research questions was obtained. Data collection stopped when data saturation was reached.

The participants were selected based on the researcher's previous knowledge of families with children living with cancer. The objectives of the study were explained to each participant, and they were well informed that interviews would be recorded. If they agreed, J o u r n a l P r e -p r o o f the meetings were then scheduled. Interviews were semi-structured, using interview guidance (Table 1) . To develop the interview questions, two authors (JM and FE) individually made an initial outline of possible problems relevant to the purpose of this study. Then appropriate questions were selected through discussion between them. All questions were followed by indepth probing. The study received ethical approval from the ethics committee of Tehran University of Medical Sciences.

The data were organized using the MAXQDA software version 10.Following Braun & Clarke (2006) approach of thematic analysis (Braun& Clarke, 2006) , all interviews were recorded and given an identification code (Mother: M1, M2... / Father: F1, F2. / Nurse: N1, N2 / Child: C1, C2). The interviews were transcribed verbatim and read several times. This helped us to familiarize ourselves with the depth and breadth of the content and to search for meanings or possible patterns. When the data was read, an initial list of ideas about what is interesting about them was generated and coded. In this study, the quotes from the children, parents, and nurses were analyzed together. Then the different codes were sorted into potential themes and collecting all the relevant coded data extracts within the identified themes.

Furthermore, some themes were categorized into similar and cohesive groups called subthemes. The themes were reviewed in terms of internal and external heterogeneity. If necessary, the themes were changed, and some new themes were identified. An attempt was made to give the themes a short and concise name in such a way as to instill in the reader's mind what that theme is about. We used an inductive approach for this phase. As the final stage of the analysis, we selected examples from quotes, finalized analysis of quotations from some selected quotes, literature search, and prepared the scientific report.

Guba and Lincoln's criteria were used to validate the findings (Lincoln & Guba, 1985) .To ensure credibility, the researcher's previous acquaintance with the cancer department and its patients was useful in understanding and analyzing the data. The themes extracted from the interviews were checked with the participants as needed, and discrepancies were adjusted.

For confirm ability, two members of the research team analyzed the data independently and reached a consensus. To ensure dependability, the researchers conducted semi-structured interviews using an interview guide to explore the topic of interest. Transferability was achieved by describing the research context thoroughly and providing detailed explanations of the research process.

In total, 21 participants were interviewed in this study that includes five children, thirteen mothers, a father, and three pediatric oncology nurses. The children and parents were from different families except for a father with the 14-year-old female and a mother with the 13year-old female ( Table 2 ). The data analysis produced three main themes include swinging on the path of fear to adaptation, Left-alone at emotional distances, and Care system confusion and decreased quality of care. Eight subthemes emerged alongside the three themes (Table   2 ).

We understood that children living with cancer feel an enormous health challenge as well as the uncertainties arising from COVID-19. These have made the children and their families feel threatened. A Part of people's fears is related to the significant mortality rates, high rate of transmissibility, and inadequate knowledge of the virus. In particular, these children's weaker immune system has increased the anxiety in both parents and well-wishers. Although J o u r n a l P r e -p r o o f there is a constant need to observe public health protocols, access to most items needed for personal protection is currently limited in many jurisdictions.

"I have gotten used to cancer, I mean I know about it. However, corona is strange and unknown to me. So I am afraid of it more, and I am worried about getting the coronavirus."(C1)

"I am afraid of the corona. I am afraid of getting infected because everyone who gets it will die."(C2) "The immune system of my child is weakened because of cancer. My child is at an increased risk of "At the beginning of the outbreak, we had trouble getting masks, gloves, and disinfectants because of the shortages and high costs. Because of the cancer treatment, my child needs these."(M4)

The data analysis revealed that after a while, children and their families had experienced changes in their approach towards coping with COVID-19. This situation has persisted since the beginning of the outbreak until the time of this study (five months post-pandemic commencement). With the pandemic's prolongation, they inevitably altered their attitude from panic and complete alertness to trying to regain control living with the virus. They also developed strategies to deal with the fear of the disease by adapting themselves to the new situation. Restricting interactions with the broader society is also common. Children are not allowed to attend school, nor have outdoor activities and no face-to-face contact with friends. These are mostly great sources of entertainment for many of these children. Therefore, feelings such as restlessness, loneliness and boredom were quite common among children. 

COVID-19 Prevention becomes the main concern of the health care system. Therefore, children and family's needs no longer viewed as a priority in the care system. According to the findings, the COVID-19 pandemic over shadowed all families' needs and severely affected the quality and scope of care. Although children and their families were aware of the importance of special conditions related to the COVID-19 pandemic, the rules and restrictions imposed on them and the lack of attention to their needs created extra stress and worries.

"To be allowed to enter the ward, the mother and child must take a Corona test, which is 

Based on the narratives, the sense of security in the community and the hospital was limited, particularly as they were faced with one-sided hospital laws. They pointed out the problems of the system, such as community guidelines not fully implemented and compatible with those in the pediatric ward. Some of the instructions were theoretical, and it was not possible to implement them in practice due to shortages and lack of access to resources. Some hospitals imposed restrictions on the children and their families, which were difficult to comply with. These issues were particularly crucial for those hospitalized in the cancer wards.

J o u r n a l P r e -p r o o f "Some people do not respect public health instructions in the community or the hospital. Some people do not fully follow the principles of personal hygiene and health advice. Some doctors were using full personal protective equipment at the hospital, but some others only wore masks."(M1) "Many people emphasized that mothers and children should be tested for corona before hospitalization, but these rules were only for us children. Nurses and doctors or other noncancer patients were not required to observe these rules."(M2) "Mothers and children were not allowed to enter the cancer ward with their shoes and were required to use special slippers provided by the hospital. This is for our children's health, but why do they not observe this rule themselves and enter the wards with high heels? They are making it hard on us so that we do not carry corona to the ward. We do not even have the right to choose the right slippers for ourselves and our children, and we have to wear whatever they give us."(M2)

Children with cancer and their families mentioned their expectations from the medical staff and the health system in their interviews. They expected to have access to personal hygiene equipment for their protection and others during hospitalization and to receive financial support to pay for the COVID-19 PCR Test. Besides, they noted that not only the patients and families need to follow the regulations related to personal hygiene, but also, medical staff should respect those rules. The children and their families explained that as much as they could spread the virus in the ward, the health personnel may also contribute to transmitting the virus. However, most of the restrictions were mainly for children and their families. One of the significant demands of children and their families from the medical staff during the COVID-19 pandemic is to pay attention to their need for continued communication and emotional support. Since the system is focused on controlling the spread J o u r n a l P r e -p r o o f of the virus, less attention is paid to emotional needs. Based on the participants' experience, children and their families did not receive any psychological or emotional support. 

Our findings reflect the experiences of children with cancer and their families during the COVID-19 pandemic. In this study, the children expressed their concerns about being exposed to an unknown and enormous threat. In other words, children with cancer and their families emphasized that the pandemic overburdens them as they continue to live a life of uncertainty. They pointed out other significant concerns, such as changes in the process of treatment, the lack of effective treatment, and how the disease has become so widespread. It seems that these concerns have gone beyond the current locality to become a global concern, creating fear and anxiety among people from all walks of life (Lin, Hu, Alias, & Wong, 2020; Park et al., 2020; Zandifar & Badrfam, 2020) .

People with underlying conditions may experience varying degrees of risk. For example, a recent study in Turkey found that children and adolescents with cystic fibrosis (CF) and their J o u r n a l P r e -p r o o f mothers experienced high levels of anxiety during the COVID-19 pandemic. The mothers, however, had higher stress levels than the children. Interestingly, in their study, children with CF had no elevated anxiety scores compared with the healthy children in the control group.

The authors of the study explain that perhaps children with CF who have encountered the fear of disease before have developed more adaptive strategies to manage future crises compared with healthy children. This is a controversial issue that needs more investigation. However, there was no significant relationship in comparing the severity of the children's anxiety, which is relates to their health state in terms of not getting COVID-19 because they have cystic fibrosis (Senkalfa& Eyuboglu, 2020 ).

In the current study, the participants mentioned cancer as a factor that increases the risk of the COVID-19 infection. Darlington found that mothers of children with cancer felt a higher risk for the COVID-19 disease. They were concerned about the weak immune system of children with cancer, the high-risk environment of the hospital, infection of family members, and the possibility of spreading the virus at home by parents (Darlington et al., 2020) .

The findings showed that limited access to personal protective equipment affects children's emotions. They were overly worried about exposure and risk of contractingCOVID-19. The shortage of personal protective equipment is a significant challenge for different countries, including Iran (Abdi, 2020) . Not having access to personal protective equipment can increase the chances of direct contact with patients and medical staff with the virus (Gondi et al., 2020) . This situation created a constant worry and could pose a threat to both the physical and mental health of children with cancer and their families.

After facing the COVID-19 crisis, children and families tried to develop strategies to address the fear of the COVID-19 pandemic. Since the pandemic persists, it has made children living with cancer, and their families find creative ways to adapt to the situation. In other words, they seem to be moving from a state of fear to finding ways to adjust to the new J o u r n a l P r e -p r o o f conditions created by the COVID-19 pandemic. So their responses range from panic to readiness to gain control over circumstances and learn to live with it. Evidence from a study conducted in the United States suggests that the most common approach to cope with COVID-19 stress and quarantine conditions were thought distraction, active adaptation, and seeking social and emotional support (Park et al., 2020 ).

In the current study, behaviors such as being alert and obsessive about personal hygiene could be linked to anxiety. In contrast, more adaptive practices such as staying at home, observing personal hygiene, using protective measures, and staying away from the news are in line with mental health advice and the COVID-19 prevention protocols (WHO, March 18, 2020) . For example, the World Health Organization (WHO) recommends the following interventions to improve mental health during the COVID-19 pandemic: avoid hearing, reading, and frequent viewing of COVID-19 related news, which causes anxiety and depression. Also, WHO recommends obtaining information regarding essential measures to protect individuals against COVID-19 from sound sources such as ministries of health (WHO, March 18, 2020) . Moreover, protocols on managing cancer during the COVID-19 pandemic include observing personal hygiene and reducing unnecessary visits to the hospital (Ruggiero et al., 2020) . Some of these are in line with the adaptive approach used by our participants in the current study (Ruggiero et al., 2020) . Since there are several ways to improve mental health during this pandemic, people may choose different approaches to cope with stress (Park et al., 2020) , based on what works best. A fraction of the participants in this study seems to rely on spirituality to strengthen their ability to cope with the unprecedented and threatening situation.

The participants in this study expressed feelings similar to being left alone at an emotional distance. During the pandemic, children and families are forced to follow isolation principles that limit their life activities such as attending school and meeting with friends and J o u r n a l P r e -p r o o f acquaintances. These rules intensified the feelings of loneliness and isolation (Jibb et al., 2018) . The coexistence of the COVID-19 pandemic with cancer complicates the situation for the children and their families. Dealing with life-threatening illnesses such as cancer at the time of a pandemic is difficult and challenging for the children and their families. Coping with this situation requires emotional and social support (Pedro, Galvão, Rocha, & Nascimento, 2008) . The COVID-19 pandemic, the quarantine, and the necessity to observe physical and social distance at homes, hospitals, and communities led to the loss of emotional and social support provided by friends, family, relatives, medical staff, and active cancer support groups. Furthermore, this adds to the intensity of the loneliness of children with cancer and families. Regarding the care system confusion and decreased quality of care, the participants point out that, with the onset of the COVID-19 pandemic, the provision of healthcare services in hospitals changed significantly. Various protocols were introduced to control the infection, including wearing personal protective equipment, taking care of suspected and infected patients, hand washing and disinfection of surfaces in clinical settings (ECDC, May 13, 2020). For the prevention and management of COVID-19 in the pediatric cancer wards, it is recommended to limit medical staff, restrict visitors and the number of visits to each patient, use appropriate personal protective equipment for medical and non-medical staff working in the ward and suspending all optional activities (Ruggiero et al., 2020) . Due to these new recommendations, children and families felt their needs were not a priority to the health care system and workers anymore, since their focus was on infection prevention and mandatory restrictions. Patients and their family were concerned about the decreased quality of care in the hospital.

Participants mentioned that in some cases, intra-sectoral rules and regulations led to conflicts between parents and health care workers. For example, imposing the pharyngeal  Please explain the effects of COVID-19 on your daily activities and that of your child.  What changes have you noticed in your child's life since the beginning of the COVID-19 pandemic?  How did your child react to the situation?  What changes have taken place in the process of receiving hospital care since the beginning of the COVID-19 pandemic?  Would you please talk about any other aspects of the care provided for your child that you wish would have been different in light of the COVID-19 pandemic? Nurses  What changes have occurred in the process of providing hospital care for children with cancer?  What challenges do the children and their families face? 

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The authors thank all children with cancer who provided us with the opportunity to conduct the current participatory study. We also would like to thank the parents of children with cancer, pediatric cancer department staff, and the financial support of the Tehran University of Medical Sciences.