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      Quality of life and occupational performance of children with cancer in the era of the COVID-19 pandemic in terms of rehabilitation

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          Abstract

          Purpose

          This study was designed to determine the changes in the quality of life (QOL) and occupational performance of children with cancer and to examine their rehabilitation needs during the pandemic period in Turkey.

          Methods

          60 children with cancer and their families participated in the study. The first and second assessments were carried out in April and September 2020, respectively. The pediatric quality of life inventory parent proxy-report was used to evaluate the QOL, and the Canadian occupational performance measurement was used to evaluate children’s occupational performance and satisfaction. A qualitative interview was planned to determine the impact of the pandemic on children with cancer alongside their families and therefore determining the rehabilitation needs of the children.

          Results

          While there is no statistically significant change in the pain-related conditions of the children in the first six months of the pandemic ( p > 0.05), procedural and treatment anxieties of the children increased during the treatment. Their QOL including cognitive state, perceived physical appearance and communication skills also showed a statistically significant decrease ( p < 0.05). Both the occupational performance and satisfaction scores decreased significantly, covering the pre-pandemic and pandemic era ( p < 0.01). In the qualitative interview parents expressed their children's need for physical, psychological and social participation support. Also, they emphasized the need for time management.

          Conclusions

          During the COVID-19 pandemic, the QOL and occupational performance level of children with cancer decreased significantly. Holistic rehabilitation approaches complying with pandemic conditions are likely to benefit these children.

          Supplementary Information

          The online version contains supplementary material available at 10.1007/s11136-021-02857-7.

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          Most cited references54

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          Psychological interventions for people affected by the COVID-19 epidemic

          The coronavirus disease 2019 (COVID-19) epidemic has now spread across China for over a month. The National Health Commission has issued guidelines for emergency psychological crisis intervention for people affected by COVID-19. 1 Medical institutions and universities across China have opened online platforms to provide psychological counselling services for patients, their family members, and other people affected by the epidemic. However, Xiang and colleagues, 2 claim that the mental health needs of patients with confirmed COVID-19, patients with suspected infection, quarantined family members, and medical personnel have been poorly handled. The organisation and management models for psychological interventions in China must be improved. Several countries in the west (eg, the UK and USA) have established procedures for psychological crisis interventions to deal with public health emergencies. 3 Theoretical and practical research on psychological crisis interventions in China commenced relatively recently. In 2004, the Chinese Government issued guidelines on strengthening mental health initiatives, 4 and psychological crisis interventions have dealt with public health emergencies—eg, after the type A influenza outbreak and the Wenchuan earthquake—with good results.5, 6 During the severe acute respiratory syndrome (SARS) epidemic, several psychological counselling telephone helplines were opened for the public, and quickly became important mechanisms in addressing psychological issues. However, the organisation and management of psychological intervention activities have several problems. First, little attention is paid to the practical implementation of interventions. Overall planning is not adequate. When an outbreak occurs, no authoritative organisation exists to deploy and plan psychological intervention activities in different regions and subordinate departments. Hence, most medical departments start psychological interventional activities independently without communicating with each other, thereby wasting mental health resources, and failing patients in terms of a lack of a timely diagnosis, and poor follow-up for treatments and evaluations. Second, the cooperation between community health services and mental-health-care institutions in some provinces and cites in China has been decoupled. After the assessment of the mental health states of individuals affected by the epidemic, patients cannot be assigned according to the severity of their condition and difficulty of treatment to the appropriate department or professionals for timely and reasonable diagnosis and treatment. And after remission of the viral infection, patients cannot be transferred quickly from a hospital to a community health service institution to receive continuous psychological treatment. Finally, owing to a shortage of professionals, the establishment of psychological intervention teams in many areas is not feasible. Teams might consist of psychological counsellors, nurses, volunteers, or teachers majoring in psychology and other related fields, with no professional and experienced psychologists and psychiatrists. One individual often has multiple responsibilities, which can reduce the effectiveness of interventions. This situation can be resolved by improving relevant policies, strengthening personnel training, optimising organisational and management policies, and constantly reviewing experiences in practice. In the National Health Commission guidelines, 1 key points were formulated for different groups, including patients with confirmed and suspected infections, medical care and related personnel, those who had close contacts with patients (eg, family members, colleagues, friends), people who refused to seek medical treatment, susceptible groups (eg, older people, children, and pregnant women), and the general public. With disease progression, clinical symptoms become severe and psychological problems in infected patients will change; therefore, psychological intervention measures should be targeted and adapted as appropriate. Studies have confirmed that individuals who have experienced public health emergencies still have varying degrees of stress disorders, even after the event is over, or they have been cured and discharged from hospital, indicating these individuals should not be ignored.7, 8 Therefore, we should consider the disease course, severity of clinical symptoms, place of treatment (eg, isolated at home, ordinary isolation ward, intensive care unit), and other factors to classify individuals who need psychological intervention and to formulate specific measures to improve the effectiveness of these interventions. Under strict infection measures, non-essential personnel such as clinical psychiatrists, psychologists, and mental health social workers, are strongly discouraged from entering isolation wards for patients with COVID-19. Therefore, frontline health-care workers become the main personnel providing psychological interventions to patients in hospitals. For individuals with a suspected infection who are under quarantine or at home, community health service personnel should provide primary medical care and mental health care. However, because of complicated work procedures, heavy workloads, and a lack of standardised training in psychiatry or clinical psychology, community health service personnel do not always know how to mitigate the psychological distress of patients. A professional team comprising mental health personnel is a basic tenet in dealing with emotional distress and other mental disorders caused by epidemics and other public health emergencies. The national mental health working plan (2015–20) reported that 27 733 licensed psychiatrists (1·49 per 100 000 population), 57 591 psychiatric nurses, and more than 5 000 psychotherapists worked in China in 2015. 9 By the end of 2017, the number of licensed psychiatrists had increased to 33 400, and the number of psychotherapists, social workers, and psychological counsellors was also increasing year by year, 10 but their numbers were still too few to meet the needs of patients with mental disorders. Hence, training of mental health professionals at different levels is urgently required by the Chinese Government. Interventions should be based on a comprehensive assessment of risk factors leading to psychological issues, including poor mental health before a crisis, bereavement, injury to self or family members, life-threatening circumstances, panic, separation from family and low household income. 11 Any major epidemic outbreak will have negative effects on individuals and society. Lessons learned from terrorist events at the Pentagon and anthrax attacks in the USA showed the importance of pre-establishing community coalitions to mobilise resources efficiently and effectively and to respond successfully to the disaster-related mental health needs of affected individuals. 12 Planning of psychological interventions in China is usually done passively; few preventive measures are implemented before the occurrence of serious psychological issues caused by acute emergency events. The outbreak of COVID-19 has shown many problems with the provision of psychological intervention in China. Here we have suggested ways that the government could establish and improve the intervention system based on sound scientific advice, to effectively deal with the mental health problems caused by public health emergencies. © 2020 Pasieka 2020 Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active.
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            Coronavirus disease 2019 (COVID-19): A literature review

            In early December 2019, an outbreak of coronavirus disease 2019 (COVID-19), caused by a novel severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), occurred in Wuhan City, Hubei Province, China. On January 30, 2020 the World Health Organization declared the outbreak as a Public Health Emergency of International Concern. As of February 14, 2020, 49,053 laboratory-confirmed and 1,381 deaths have been reported globally. Perceived risk of acquiring disease has led many governments to institute a variety of control measures. We conducted a literature review of publicly available information to summarize knowledge about the pathogen and the current epidemic. In this literature review, the causative agent, pathogenesis and immune responses, epidemiology, diagnosis, treatment and management of the disease, control and preventions strategies are all reviewed.
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              Behavioral and Emotional Disorders in Children during the COVID-19 Epidemic

              Since December 2019, health systems around the globe have struggled with an increasing number of cases of a viral respiratory syndrome that emerged in China. The cause is a new strain in the coronavirus family, provisionally named 2019 novel coronavirus (2019-nCoV) 1 , SARS-CoV-2 or COVID-19. 2 The European Paediatric Association–Union of National European Paediatric Societies and Associations (EPA-UNEPSA) has established a collaborative working group with key Chinese academic institutions and medical centers with the purpose of facilitating the reciprocal exchange of information and sharing scientific knowledge. The aim of this commentary by the China-EPA-UNEPSA working group is to raise awareness regarding children's psychological needs during epidemics and report early data collected in the COVID-19–affected areas in China during the current outbreak, emphasizing the role of families and caregivers in the timely recognition and management of negative emotions. Epidemiology of COVID-19 The COVID-19 outbreak first erupted in the city of Wuhan in the Hubei Province of China, where several local health facilities reported clusters of patients with pneumonia of unknown cause; they were epidemiologically linked to a seafood and wet animal wholesale market. 3 COVID-19 infection rapidly spread throughout China, involving the provinces of Chongqing, Hunan, Anhui, Henan, Jiangxi, and Shaanxi. 4 Over the next 3 months, COVID-19 spread to other regions of the world, reaching >100 000 cases globally in the first week of March 2020, of which approximately 80% were reported in China, 6% in South Korea, 3% in Iran, and 0.2% in the US. In Europe, the first case of COVID-19 was registered in a patient hospitalized in Munich, Germany in early January 2020, following contact with a traveler from China. 5 Later, several other cases were reported in variable numbers in Germany, Spain, Italy, France, and other European countries, together representing roughly 5% of the cases of COVID-19 recorded worldwide. 4 Genetic studies on viral strains isolated from patients affected by Coronavirus infection throughout the world confirmed that they are all phylogenetically related to the original Chinese mutant strain. 6 In contrast to seasonal influenza, COVID-19 seems to cause a milder clinical infection in children than in adults or older people. Early studies have suggested that children are just as likely as older age groups to become infected with the coronavirus but are far less likely to develop severe symptoms. 7 The risk of severe disease and death is highest for seniors and those with severe health conditions, such as heart disease, chronic lung disease, cancer, and diabetes. 7 COVID-19 has been perceived worldwide as a major threat to health and a danger to the global economy, affecting people's lives by influencing their everyday behavior and causing feelings of panic anxiety, depression, and often triggering intense dread. In China, COVID-19 has affected children aged 3 months to 17 years, most of whom had close contact with infected persons or were part of a family cluster of cases. 8 No official data are available on the number of symptomatic and asymptomatic individuals positive for COVID-19 in the <18 age group. Infected children might appear asymptomatic 9 or present with fever, dry cough, and fatigue, and few have upper respiratory symptoms including nasal congestion and running nose. Some patients present with gastrointestinal symptoms, including abdominal discomfort, nausea, vomiting, abdominal pain, and diarrhea. Most infected children have mild clinical manifestations without fever or symptoms of pneumonia, and the majority recover within 1-2 weeks after disease onset. Few progress to lower respiratory infections. Although children seem to be less vulnerable than adults to COVID-19, initial reports from Chinese areas hit by the outbreak indicate that children and adolescents have been impacted psychologically, manifesting behavioral problems, as discussed below. 10 Early Investigation of Chinese Children's Behavioral and Emotional Reactions to COVID-19 Children are not indifferent to the dramatic impact of the COVID-19 epidemic. They experience fears, uncertainties, and physical and social isolation and may miss school for a prolonged period. Understanding their reactions and emotions is essential to properly address their needs. A preliminary study conducted in Shaanxi Province during the second week of February 2020, which was authorized by the local authorities, showed that the most common psychological and behavioral problems among 320 children and adolescents (168 girls and 142 boys) aged 3-18 were clinginess, distraction, irritability, and fear of asking questions about the epidemic (unpublished data). Because of the Chinese government's mobility restrictions related to epidemics, as enforced by local and national authorities, the study was performed using an online questionnaire to investigate the children's behavioral and emotional responses to the current epidemics. Several children were confined at home under protective isolation because they resided in highly affected areas. The questionnaire, which was completed by the parents, incorporated the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) criteria 10 commonly used for a cross-cultural assessment of anxiety disorders, including depression. 11 Fear of asking about the epidemics and the health of relatives, poor sleep including nightmares, poor appetite, physical discomfort, agitation and inattention, clinginess, and separation problems were among the main psychological conditions investigated. An important factor ensuring the reliability of results collected by questionnaires investigating mental disorders in general and particularly during emergencies is the procedure for data collection and statistical analysis followed by specialized personnel responsible for data collection, registration, and statistical processing, as in this case. The use of standard statistical methods ensures the comparability of the results with other studies. 12 , 13 The purpose of the questionnaire used in the Chinese study was not to establish a final diagnosis of mental disorder and depression or to monitor depression severity, but rather to screen for behavioral and emotional disorders as a “first step” approach. Subjects who screened positive at preliminary investigation of their behavioral and emotional condition should be included in future programs to determine whether they meet criteria for a depressive disorder. Psychological distress in Children Exposed to Adverse Events Although the knowledge base regarding children's responses to trauma and adverse events in general has been expanding, descriptions of their responses during epidemics remain scarce. 14 Yet their vulnerability makes this an important group to study. Several studies have documented the damaging effects of psychological stress due to negative events in children. Anxiety, depression, lethargy, impaired social interaction, and reduced appetite are commonly reported manifestations. Physiological effects include a weakened or compromised immune system.15, 16, 17, 18, 19 In the course of adverse events, children are often forced to stay home for long periods due to enforced isolation and school closure, resulting in limited connection with classmates and reduced physical activity. A preliminary study conducted in the Shaanxi province during the COVID-19 epidemic by the China-EPA-UNEPSA collaborative working group showed that children in the younger age group (3-6 years) were more likely than older children to manifest symptoms, such as clinginess and fear that family members could contract the infection (P = .002). Children aged 6 to 18 years were more likely to show inattention (P = .049) and persistent inquiry (P = .003). Clinging, inattention, and irritability were the most severe psychological conditions demonstrated by the children in all age groups (Figure; available at www.jpeds.com). The rates of fear, anxiety, and other emotions were higher in children residing in highly epidemic areas; however, the differences between areas identified by different levels of epidemic risk were not statistically significant. Media entertainment was largely successfully used by families over reading and physical exercise as a means to relieve their children's distress and address their concerns regarding the negative condition they were experiencing (Table; available at www.jpeds.com). The Importance of Nurturing Resilience in Children Exposed to Epidemics Children facing unexpected and unknown events typically exhibit various stress reactions, as confirmed in the study performed in China during the COVID-19 epidemic. Resilience, the personal attributes that help children manage everything from little disappointments to big life traumas, should be nurtured and implemented by public health programs in children and teens living in areas hit by calamities such as epidemics. If properly supported by healthcare professionals, families, and other social connections, including school environment, children and adolescents can appropriately overcome a condition of distress and prospectively stabilize emotionally and physiologically. 20 Conclusions Pediatricians working in Shaanxi Province, China have pursued the strategy of nurturing resilience in children and adolescents hit by the psychological consequences of the COVID-19 epidemic. The measures suggested by Chinese pediatricians to parents and family members, included increasing communication with children to address their fears and concerns, playing collaborative games to alleviate loneliness, encouraging activities that promote physical activity, and using music therapy in the form of singing to reduce the worry, fear, and stress that the child may feel. All these measures are focused on supporting the child to get through this difficult time. Furthermore, parents should pay attention to sleep difficulties and nightmares, prevent increased daytime sleep and suggest sleep hygiene and relaxation methods, model a positive psychological attitude to reduce stress, and divert attention to more productive and positive directions. The effect of this outbreak is unclear at present, as the situation is rapidly evolving. 21 The China-EPA-UNEPSA working group believes that the preliminary report from the Chinese province of Shaanxi includes useful information for professionals involved in the care of children hit by the current and possible future epidemics. 22

                Author and article information

                Contributors
                gozdeonal0@gmail.com
                Journal
                Qual Life Res
                Qual Life Res
                Quality of Life Research
                Springer International Publishing (Cham )
                0962-9343
                1573-2649
                3 May 2021
                : 1-12
                Affiliations
                [1 ]Therapy and Rehabilitation Department, Hacı Bektaş Veli University, Nevşehir, Türkiye
                [2 ]Therapy and Rehabilitation Department, Kütahya Health Sciences University, Kütahya, Türkiye
                [3 ]Occupational Therapy Department, Hacettepe University, Ankara, Turkey
                Author information
                http://orcid.org/0000-0002-6656-965X
                Article
                2857
                10.1007/s11136-021-02857-7
                8091154
                33939075
                cfc67b13-94de-46bf-b1c5-8b07e83423cc
                © The Author(s), under exclusive licence to Springer Nature Switzerland AG 2021

                This article is made available via the PMC Open Access Subset for unrestricted research re-use and secondary analysis in any form or by any means with acknowledgement of the original source. These permissions are granted for the duration of the World Health Organization (WHO) declaration of COVID-19 as a global pandemic.

                History
                : 21 April 2021
                Categories
                Article

                Public health
                pandemic,covid-19,children with cancer,rehabilitation needs,quality of life,occupational performance

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