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Coping strategies for chronically ill children and adolescents facing the COVID-19 pandemic

Estrategias de afrontamiento para niños y adolescentes con enfermedades crónicas ante la pandemia COVID-19

ABSTRACT

Objective:

to understand the experiences and coping strategies of children and adolescents with chronic illnesses during the COVID-19 pandemic.

Methods:

a descriptive study, with a qualitative approach, carried out with six children and adolescents at the reception of an outpatient clinic of a pediatric hospital in the state of Ceará. Data collection took place from April to September 2021, using story-drawing, analyzed in light of Coutinho’s criteria.

Results:

two thematic categories emerged: Situations experienced by children and adolescents in times of COVID-19; Coping strategies for children and adolescents in their chronic illness process during the COVID-19 pandemic.

Final considerations:

understanding the experiences and coping strategies of children and adolescents with chronic illness demonstrated the expression of creative imagination, incorporated by subjective components, which brings to light an approximation with the reality perceived and interpreted in a context of the COVID-19 pandemic.

Descriptors:
Chronic Illness; Children; Adolescent; Psychological Adaptation; COVID-19

RESUMEN

Objetivo:

comprender las experiencias y estrategias de afrontamiento de niños y adolescentes con enfermedades crónicas durante la pandemia de COVID-19.

Métodos:

estudio descriptivo, de enfoque cualitativo, realizado con seis niños y adolescentes en la recepción de un ambulatorio de un hospital pediátrico del estado de Ceará. La recolección de datos se realizó de abril a septiembre de 2021, mediante dibujo-cuento, analizados a la luz del criterio de Coutinho.

Resultados:

surgieron dos categorías temáticas: Situaciones que viven niños y adolescentes en tiempos de COVID-19; Estrategias de afrontamiento de niños y adolescentes en su proceso de enfermedad crónica durante la pandemia de COVID-19.

Consideraciones finales:

comprender las experiencias y estrategias de afrontamiento de niños y adolescentes con enfermedades crónicas demostró la expresión de la imaginación creativa, incorporado por componentes subjetivos, que pone de manifiesto una aproximación con la realidad percibida e interpretada en un contexto de pandemia de COVID-19.

Descriptores:
Enfermedad Crónica; Niño; Adolescente; Adaptación Psicológica; COVID-19

RESUMO

Objetivo:

compreender as vivências e estratégias de enfrentamento das crianças e adolescentes com doenças crônicas durante a pandemia de COVID-19.

Métodos:

estudo descritivo, de abordagem qualitativa, realizado com seis crianças e adolescentes em acompanhamento ambulatorial de um hospital pediátrico do estado do Ceará. A coleta de dados foi realizada de abril a setembro de 2021, utilizando-se desenho-estória, analisada à luz dos critérios de Coutinho.

Resultados:

emergiram duas categorias temáticas: Situações vivenciadas por crianças e adolescentes em tempos de COVID-19; Estratégias de enfrentamento de crianças e adolescentes em seu processo de adoecimento crônico durante a pandemia de COVID-19.

Considerações finais:

a compreensão das vivências e estratégias de enfrentamento das crianças e adolescentes com adoecimento crônico demonstrou a expressão da imaginação criadora, incorporada por componentes subjetivos, que traz à tona aproximação com a realidade percebida e interpretada em um contexto de pandemia pela COVID-19.

Descritores:
Doença Crônica; Criança; Adolescente; Adaptação Psicológica; COVID-19

INTRODUCTION

COVID-19, a disease caused by the new Coronavirus (SARS-CoV-2), caused several health challenges and led to the decree of a pandemic situation, as of March 11, 2020, by the World Health Organization(11 World Health Organization (WHO). Director-General’s opening remarks at the media briefing on COVID-19 - 11 March 2020 [Internet]. World Health Organization; 2020 [cited 2020 Mar 11]. Available from: https://https://www.who.int/director-general/speeches/detail/who-director-general-s-opening-remarks-at-the-media-briefing-on-covid-19---11-march-2020
https://https://www.who.int/director-gen...
). Such a constant threat and widespread global advance has caused a high number of deaths.

The situation of the COVID-19 pandemic until the end of Epidemiological Week (EW) 50, on December 17, 2022, recorded 652,754,818 confirmed cases globally, with 6,664,842 deaths. In Brazil, during the same period, the country ranked second in number of deaths, totaling 691,863. In the local scenario, the state of Ceará had the highest mortality rate (305.3 deaths/100 thousand inhabitants) among the states of the Federation(22 Ministério da Saúde (BR). Secretaria de Vigilância em Saúde. Boletim Epidemiológico Especial: doença pelo novo coronavírus -COVID-19 nº144, Semana Epidemiológica 50 [Internet]. 2022 [cited 2023 Jun 11]. Available from: https://www.gov.br/saude/pt-br/centrais-de-conteudo/publicacoes/boletins/epidemiologicos/covid-19/2022/boletim-epidemiologico-no-144-boletim-coe-coronavirus
https://www.gov.br/saude/pt-br/centrais-...
).

Furthermore, in Brazil, 699 cases of deaths from Severe Acute Respiratory Syndrome were recorded in children and adolescents aged between six and 19 years. Among these cases, 329 were confirmed to be due to COVID-19 infection. Illness in this age group totaled 30,234 cases, of which 5910 were classified as COVID-19 in EW 50 of 2022(22 Ministério da Saúde (BR). Secretaria de Vigilância em Saúde. Boletim Epidemiológico Especial: doença pelo novo coronavírus -COVID-19 nº144, Semana Epidemiológica 50 [Internet]. 2022 [cited 2023 Jun 11]. Available from: https://www.gov.br/saude/pt-br/centrais-de-conteudo/publicacoes/boletins/epidemiologicos/covid-19/2022/boletim-epidemiologico-no-144-boletim-coe-coronavirus
https://www.gov.br/saude/pt-br/centrais-...
).

In view of this, health surveillance bodies urgently adopted guidelines and applied measures such as isolation of suspected cases and physical and social distancing in an attempt to minimize spread of disease and health service overload with positive cases(33 World Health Organization (WHO). Director-General's opening remarks at the media briefing on COVID-19 - 16 March 2020 [Internet]. 2020 [cited 2020 Mar 11]. Available from: https://www.who.int/director-general/speeches/detail/who-director-general-s-opening-remarks-at-the-media-briefing-on-covid-19---16-march-2020
https://www.who.int/director-general/spe...
). At the peak of the first wave of the pandemic, seeking to contain the pandemic, which occurred in EW 30 (19-25/July 2020)(44 Conselho Nacional de Secretários (CONASS). Painel CONASS COVID-19 [Internet]. 2022 [cited 2023 Jun 11]. Available from: https://www.conass.org.br/painelconasscovid19/
https://www.conass.org.br/painelconassco...
), measures were instituted with the stoppage of non-essential activities and the closure of some institutions (schools, stores, gyms and churches), avoiding the movement of people in public spaces.

Such measures had repercussions on people’s lives, changing their routines, locking them in and removing them from social life, due to the impossibility of face-to-face coexistence and physical contact limitation. This affected people’s daily lives around the world, making it necessary to find daily coping strategies to adapt to the conditions imposed at this time.

For this study, we chose the definition of Folkman and Moskowitz(55 Folkman S, Moskowitz J T. Positive affect and the other side of coping. Am Psychol. 2000;55(6):647–54. https://doi.org/10.1037/0003-066X.55.6.647
https://doi.org/10.1037/0003-066X.55.6.6...
), from the perspective of how people deal or what resources they use, or what their control capacity is to adapt to adverse circumstances. These strategies work as a dynamic process and, depending on the context, can be considered with different focuses. Coping can be classified into two focuses: on the problem (effort to try to change the source of stress, with the aim of modifying it) and on emotion (a response generated by the cognitive to reduce the emotional disorder in the face of a stressful situation).

Among those most affected, children and adolescents stopped attending school and coexistence with their peers and family was restricted due to mandatory confinement (lockdown), which led to health problems related to emotional and psychological issues, such as anxiety, depression, phobias, behavioral changes and increased sedentary lifestyle(66 Panda PK, Gupta J, Chowdhury SR, Kumar R, Meena AK, Madaan P, et al. Psychological and behavioral impact of lockdown and quarantine measures for covid-19 pandemic on children, adolescents and caregivers: a systematic review and meta-analysis. J Trop Pediatr. 2021;67(1):fmaa122. https://doi.org/10.1093/tropej/fmaa122
https://doi.org/10.1093/tropej/fmaa122...
). According to the Pan American Health Organization, during the pandemic, this population suffered severe impacts on both their physical and mental health, such as a worsening educational crisis and increased vulnerabilities, especially among girls(77 Organização Pan-Americana da Saúde (OPAS). Crianças e adolescentes estão sendo profundamente impactados pela pandemia de COVID-19, afirma diretora da OPAS. Washington, D.C., 15 de setembro de 2021 (OPAS) [Internet]. 2021 [cited 2022 Mar 11]. Available from: https://www.paho.org/pt/noticias/15-9-2021-criancas-e-adolescentes-estao-sendo-profundamente-impactados-pela-pandemia-covid
https://www.paho.org/pt/noticias/15-9-20...
).

Faced with this, and given the new and specific context in which this public was inserted, coping strategies needed to be defined and carried out in different ways, becoming necessary depending on the situation and the stressor. When assessing the strategies adopted by Belgian children and adolescents (9-13 years old), social support through social networks, search for distraction, creation of a comforting atmosphere and search for information about the disease were identified(88 Cauberghe V, Jans S, Hudders L, Van I. Children's resilience during Covid-19 confinement: a child's perspective which general and media coping strategies are useful? J Community Psychol. 2022;50(3):1503– 20. https://doi.org/10.1002/jcop.22729
https://doi.org/10.1002/jcop.22729...
). Furthermore, one of the ways to observe children’s and adolescents’ emotions is through the technique of free drawings, such as Trinca’s story-drawing, used in this research(99 Trinca W. Formas compreensivas de investigação psicológica: procedimento de desenhos-estórias e procedimento de desenhos de família com estórias. São Paulo: Vetor; 2013. p. 268.).

In the case of children and adolescents with chronic illnesses, identifying these strategies becomes even more valuable, since they already present changes, challenges and adversities in their daily lives due to the disease. Such an experience, regarding the health condition, may involve some risks or provide conditions of physical deficiencies or structural, developmental, behavioral or emotional disabilities, with long-term mental disorders, depending on the complexity, severity of disease and structures available to each person(1010 Mendes EV. Entrevista: a abordagem das condições crônicas pelo Sistema Único de Saúde. Ciênc Saúde Coletiva. 2018:23(2). https://doi.org/10.1590/1413-81232018232.16152017
https://doi.org/10.1590/1413-81232018232...
).

Given the above, we sought to answer the following guiding question: how did children and adolescents with chronic illness experience the moment of isolation and social distancing and what coping strategies did they use in the face of the COVID-19 pandemic?

Thus, perceiving the child or adolescent as a chronically ill person includes the opportunity to provide the expression of their meanings or meanings attributed to the situation experienced in times of pandemic. Therefore, this study is necessary to understand the current reality, and it is believed that the data evidenced will contribute to favor reflection on how to promote adaptation strategies and adequate support for care that can favor promotional, preventive and assistance actions for psychological and physical well-being, in addition to mental health in coping with these or other pandemics.

OBJECTIVE

To understand the experiences and coping strategies of children and adolescents with chronic illnesses during the COVID-19 pandemic.

METHODS

Ethical aspects

The study complied with Resolution 466 of December 12, 2012(1111 Ministério da Saúde (BR). Conselho Nacional de Saúde. Resolução nº 466 de 12 de dezembro de 2012 [Internet]. 2012[cited 2022 Mar 11]. Available from: https://conselho.saude.gov.br/ultimas_noticias/2013/06_jun_14_publicada_resolucao.html
https://conselho.saude.gov.br/ultimas_no...
), which deals with ethical issues involving human beings. All participants signed the Informed Consent and Assent Forms, and had their anonymity preserved, being identified with the letter C, for child, and A, for adolescent, followed by a numerical order (C1/C2/C3/C4, A1/A2).

Study design

This is a descriptive study with a qualitative approach. In order to guarantee the validity of methodological aspects, this research followed the COnsolidated criteria for REporting Qualitative research (COREQ) checklist(1212 Souza VR, Marziale MH, Silva GT, Nascimento PL. Tradução e validação para a língua portuguesa e avaliação do guia COREQ. Acta Paul Enferm. 2021;34:eAPE02631. https://doi.org/10.37689/acta-ape/2021AO02631
https://doi.org/10.37689/acta-ape/2021AO...
).

Methodological procedures

The story-drawing procedure, proposed by Trinca(99 Trinca W. Formas compreensivas de investigação psicológica: procedimento de desenhos-estórias e procedimento de desenhos de família com estórias. São Paulo: Vetor; 2013. p. 268.), was used as a theoretical methodological framework as a possibility of welcoming and better understanding of children’s subjectivity, which can cover their lives, their history, their way of seeing and thinking about reality.

In this study, drawing was taken into consideration, as it is a symbolic representation that helps this child and youth audience in the performance and expression of feelings, thoughts and perceptions, in addition to being a facilitator for communication in view of data collection in research.

Study setting

The study was carried out in an outpatient clinic specializing in the care of children and adolescents with chronic diseases, in a public pediatric hospital located in Fortaleza, Ceará, Brazil.

Study participants

A total of eight children and adolescents were approached, of which six agreed to participate - four children and two adolescents (accompanied by a guardian) - and two refused (justified by indisposition). Children and adolescents aged 6 to 13 years (according to the age group monitored at the study site), of both sexes, diagnosed with at least one chronic disease, undergoing outpatient treatment/monitoring at the children’s hospital(at the time of data collection), who know how to verbally communicate their ideas and present psychomotor development to carry out the drawing, were included. Those who had difficulty understanding the instructions and/or expressing their ideas in order to develop a consistent representation style between graphic production and spoken word were excluded.

Data collection and organization

The study took place from April to August 2021, using a pilot test with three participants, whose data were discarded. The sample was used for convenience, not probabilistic. Participants were approached in person, after acceptance and approval from their legal guardian as well as children or adolescents to participate in the research. The selection for data collection occurred until the information regarding the objectives outlined was reached.

The information was collected by a researcher, psychologist, doctoral student in public health and who, trained in qualitative studies, revealed her interest in investigating the emotions experienced in adverse times of the pandemic. Initially, direct contact with children and/or adolescents’ guardians occurred in the waiting room before consultation, with a brief presentation of their resume and the objective of this study.

Then, participants were directed to a specific room for interviews in the outpatient clinic, which took place at a single moment. A self-constructed form was applied to the adult responsible for the participant to characterize the sample regarding age, origin, type of chronic illness and education. The second instrument used was Trinca’s story-drawing(99 Trinca W. Formas compreensivas de investigação psicológica: procedimento de desenhos-estórias e procedimento de desenhos de família com estórias. São Paulo: Vetor; 2013. p. 268.). For the story-drawing activity, materials were provided to children and adolescents, such as black pencils, A4 sheets of paper, clipboard, box of colored pencils with twelve units and colored pens.

Participants were asked to create a drawing based on the following instruction: “Draw about what it is like for you to live with a chronic illness in times of the new coronavirus pandemic”. After the production was completed, they were invited to talk about what they had drawn, either in the form of a story or an explanation, in order to attribute its meaning or meaning verbally. At that moment, the researcher recorded, in written form, the information verbalized by participants. This application took place in a single moment, without the need to repeat interviews, freely, individually, with an average duration of 30 minutes.

Data (written and/or verbalized productions) were transcribed into Microsoft Word, observing speeches obtained during the records in field diary, without recordings (audio or visual). The drawing was used as a communication tool, focusing on verifying symbolic elements that were significant during data collection.

Data analysis

Content analysis was used for drawings based on the criteria described by Coutinho(1313 Coutinho MP, Saraiva ER. Métodos de pesquisa em psicologia social: perspectivas qualitativas e quantitativas. João Pessoa: UFPB/Editora Universitária, 2011.), in its five stages, namely: systematic observation of drawings and themes; text skimming of story contents; selection of drawings based on graphic similarities and/or approximation of themes; material exploration; and identification of meaning cores, categorization and treatment of results.

The written and verbalized productions were subjected to content analysis using the webQDA software(1414 Costa A, Moreira A, Souza F. WebQDA - Qualitative Data Analysis [Internet]. Aveiro- Portugal: Aveiro University and MicroIO; 2021[cited 2021 Jul 28]. Available from: https://www.webqda.net/
https://www.webqda.net/...
). The data, which were previously transcribed into Word, were inserted into the system from internal sources through automatic import. In the focus process, data related to children and adolescents with chronic illnesses and their experiences during the COVID-19 pandemic were automatically coded (home, no play, problem focus, spirituality focus, emotion focus) using descriptors, which enabled the construction of empirical categories through coding tree.

Drawing was taken into consideration as a communication tool, with a focus on verifying symbolic elements that were significant as well as the possible complementation of post-drawing narratives. Forms, content and harmony were considered as elements that could contemplate the analysis of content conveyed.

RESULTS

Participant characterization

The sample comprised four children and two adolescents aged between six and 13 years old. Among the participants, five were female and one male, living in the Ceará cities of Itapipoca, Granja, Pacatuba, Quixeramobim and Fortaleza. Regarding chronic diseases, cancer (C1), myelomeningocele (C2), heart disease, urological disease and tumor (C3), pneumonia and asthma (C4), sickle cell anemia (A1) and kidney disease (A2) were identified.

During the application of Trinca’s Story-Drawing(99 Trinca W. Formas compreensivas de investigação psicológica: procedimento de desenhos-estórias e procedimento de desenhos de família com estórias. São Paulo: Vetor; 2013. p. 268.) instrument, it was noticed in the feedback (testimonials) that the proposal resulted in positive movements by participants in the development and expression of their activity.

In this way, the themes were derived from the productions inherent to data collection, which emerged in two thematic categories: Situations experienced by children and adolescents in times of COVID-19; and Coping strategies for children and adolescents in their chronic illness process during the COVID-19 pandemic.

Situations experienced by children and adolescents in times of COVID-19

Reading the drawings allowed the researcher a psychological understanding of participants’ reality, who outlined their anxieties, fears and perceptions of reality during the pandemic, listed in the first category. Chart 1 presents a report on the feelings of some participants and drawings in relation to situations experienced by participants during the COVID-19 pandemic.

Chart 1
Situations experienced by participants during the COVID-19 pandemic. Fortaleza, Ceará, Brazil, 2022

Coping strategies for children and adolescents in their chronic illness process during the COVID-19 pandemic

Regarding coping strategies, it was noticed that they were different for each participant. While one expressed that turned to their spirituality, with the exposure of an angel (focus on spirituality, emotion), another brought the use of their skills to face situations during COVID-19 (focus on the problem), and another presented their family (focus on emotion) as a form of recurrence, as shown in their drawings. On the other hand, other participants (C1, C2 and A1) did not demonstrate coping strategies, either in their speeches or in their drawings.

Chart 2 presents the materialization of the feelings of some participants through drawings in relation to coping strategies in crisis situations in children and adolescents in their chronic illness process during the COVID-19 pandemic.

Chart 2
Coping strategies in crisis situations for children and adolescents in their chronic illness process during the COVID-19 pandemic. Fortaleza, Ceará, Brazil, 2022

DISCUSSION

The requirement to stay indoors as part of social isolation recommendations was imposed by health surveillance bodies to prevent, control and minimize the spread of COVID-19 at local and global levels(33 World Health Organization (WHO). Director-General's opening remarks at the media briefing on COVID-19 - 16 March 2020 [Internet]. 2020 [cited 2020 Mar 11]. Available from: https://www.who.int/director-general/speeches/detail/who-director-general-s-opening-remarks-at-the-media-briefing-on-covid-19---16-march-2020
https://www.who.int/director-general/spe...
,1515 Anderson RM, Heesterbeek H, Klinkenberg D, Hollingsworth TD. How will country-based mitigation measures influence the course of the COVID-19 epidemic. Lancet. 2020;395(10228):931-4. https://doi.org/10.1016/S0140-6736(20)30567-5
https://doi.org/10.1016/S0140-6736(20)30...
). This became one of the most efficient non-pharmacological interventions, since at the time, a period of high mortality (early 2020), there were still no specific vaccines for the disease(1616 Souza ASR, Amorim MMR, Melo AS, Delgado AM, Florêncio ACMC, Oliveira TV, et al. General aspects of the COVID-19 pandemic. Rev Bras Saude Mater Infant. 2021;21(suppl 1). https://doi.org/10.1590/1806-9304202100S100003
https://doi.org/10.1590/1806-9304202100S...
).

In this scenario, the present study observed that the experiences and coping strategies, in crisis situations of children and adolescents with chronic illnesses during the COVID-19 pandemic, were expressed through oral reports and drawings. It was possible to notice similarities in relation to participants’ experiences during the COVID-19 pandemic, as seen in the first category, described in Chart 1.

Participants’ representations were lived positions similar to the reality found by a large part of the world’s population, when there was a need to be indoors during the peak period of the first wave of the pandemic. These positions were observed, mainly, in the drawings of C1 and C2, in which an X-shaped representation was expressed on the door and windows, resembling a “no exit or entry” sign. Staying at home generated a feeling of enclosure, prison or confinement between these two participants.

The negative emotion associated with widespread confinement through quarantine was demonstrated with the same similarity in another study, carried out in Wuhan, which pointed to loss of control and the feeling of being trapped due to several factors, such as an increasing number of new cases, severity of the situation and imposition of measures(1717 Rubin GJ, Wessely S. The psychological effects of quarantining a city. BMJ. 2020;368:m313. https://doi.org/10.1136/bmj.m313
https://doi.org/10.1136/bmj.m313...
).

In addition to the issue of having to stay at home, combined with the need to comply with social isolation measures, this research also reached another important aspect in participants’ lives: the perspective of no longer being able to play, remembered from drawing samples and complementation of speech excerpts, which were quite expressive by A1, C1 and C2.

Speeches show impediment to doing activities outdoors, not indoors, demonstrating the desire to have a more active and apparently more dynamic lifestyle, with the need to explore what is outside, touch objects, nature and interact with other children. The opposite was noticed by Souza et al.(1616 Souza ASR, Amorim MMR, Melo AS, Delgado AM, Florêncio ACMC, Oliveira TV, et al. General aspects of the COVID-19 pandemic. Rev Bras Saude Mater Infant. 2021;21(suppl 1). https://doi.org/10.1590/1806-9304202100S100003
https://doi.org/10.1590/1806-9304202100S...
), in which children reported that, even in times of quarantine measures, they continued playing, whether at home and/or in the family context.

Still as described in the literature, in some games, participants included the virus and the changes they went through in their lives during this period, for example: experiences of games such as cleaning doll hands to prevent them from being contaminated; playing doctor to diagnose the siblings, whether or not it was COVID-19; In other types of games, the virus always acted as an evil villain(1717 Rubin GJ, Wessely S. The psychological effects of quarantining a city. BMJ. 2020;368:m313. https://doi.org/10.1136/bmj.m313
https://doi.org/10.1136/bmj.m313...
,1818 Ogueji IA, Okoloba MM, Ceccaldi BMD. Coping strategies of individuals in the United Kingdom during the COVID-19 pandemic. Curr Psychol. 2021;41:7493-9. https://doi.org/10.1007/s12144-020-01318-7
https://doi.org/10.1007/s12144-020-01318...
).

Social isolation possibly did not prevent children from playing, but it challenged them to modify the habits used in playing, including imaginary and “pretend”. Such experiences or reactions demonstrate that children reenacted the traumatic event by including the coronavirus character in their games, relating it to what happened or how it was absorbed into their life experiences.

Still from the perspective of playing, it appears that children construct their social and historical meanings, explore the environment, establish social relationships and stimulate their imagination and intellect. Through play, there is a process of building knowledge that can help balance the tensions arising from their cultural world for the subsequent construction of their individuality, personal brand and personality(1919 Vygotsky LS. A formação social da mente. São Paulo: Martins Fontes; 1984.).

As it is a comprehensive and new theme, this research made it possible to introduce another perspective, coming from participants’ personal experiences, which includes coping strategies in the face of crisis situations in their chronic illness process during the COVID-19 pandemic, described in the second category.

Such coping strategies are similar to those evidenced in a study carried out in the United Kingdom with young people and adults during the COVID-19 pandemic, in which participants revealed ways of coping with a focus on socialization and support among family members, being facilitated not by experiences of physical approach, but through video calls. Another strategy included participation in meditation activities, with a greater focus on spirituality, and also included exercise and healthy eating(1818 Ogueji IA, Okoloba MM, Ceccaldi BMD. Coping strategies of individuals in the United Kingdom during the COVID-19 pandemic. Curr Psychol. 2021;41:7493-9. https://doi.org/10.1007/s12144-020-01318-7
https://doi.org/10.1007/s12144-020-01318...
).

On the other hand, research that analyzed the emotional repercussions of the pandemic for adolescents in São Paulo (Brazil) observed that the main adaptive resource used by participants was distraction with activities via the internet and social networks, based on adolescents’ own initiatives(2020 Gadagnoto TC, Mendes LMC, Monteiro JCS, Gomes-Sponholz FA, Barbosa NG. Emotional consequences of the COVID-19 pandemic in adolescents: challenges to public health. Rev Esc Enferm USP. 2022;56:e20210424. https://doi.org/10.1590/1980-220X-REEUSP-2021-0424
https://doi.org/10.1590/1980-220X-REEUSP...
). These aspects differed from the present research, in which the use of the internet was not mentioned by adolescents and children, which may be related to participants’ socioeconomic level and access to digital technologies.

In this sense, another study in the Republic of Korea and the United States also highlighted the importance of using online activities as a problem-focused coping strategy, through searches for creative and cultural actions during the pandemic in museums, galleries and other educational entities virtually. It is worth noting that it was parents who sought out these virtual event arts and crafts activities for learning, making an investment in time spent with their children, occupying them and providing some educational value(2121 Choi M, Tessler H, Kao, G. Arts and crafts as an educational strategy and coping mechanism for Republic of Korea and United States parents during the COVID-19 pandemic. Int Rev Educ. 2020;66(5):715-35. https://doi.org/10.1007/s11159-020-09865-8
https://doi.org/10.1007/s11159-020-09865...
).

Therefore, it is important to highlight the valuable role of family members, health professionals as well as the support network for children and adolescents, in order to help them in this process of facing the difficulties highlighted in a global crisis situation through guidance, support and encouragement to actions that contribute to alleviating their suffering, especially in the context of social isolation. Relying on family support was also one of the forms of coping evidenced in the present research, through A2’s speech, in which the mother, upon realizing the awakening of reading, provided books to encourage her daughter.

The absence of such guidelines and attitudes that welcome these individuals, providing them with conditions to implement adaptive measures that make them feel better, can act as an obstacle in the elaboration and development of effective strategies to improve their well-being, contributing to the maintenance of their suffering(2020 Gadagnoto TC, Mendes LMC, Monteiro JCS, Gomes-Sponholz FA, Barbosa NG. Emotional consequences of the COVID-19 pandemic in adolescents: challenges to public health. Rev Esc Enferm USP. 2022;56:e20210424. https://doi.org/10.1590/1980-220X-REEUSP-2021-0424
https://doi.org/10.1590/1980-220X-REEUSP...
).

In agreement with other studies(2222 Forti S, Serbena CA, Scaduto AA. Mensuração da espiritualidade/religiosidade em saúde no Brasil: uma revisão sistemática. Ciênc Saúde Colet. 2020;25(4). https://doi.org/10.1590/1413-81232020254.21672018
https://doi.org/10.1590/1413-81232020254...
,2323 Cunha VF, Rossato L, Scorsolini-Comin F. Religião, religiosidade, espiritualidade, ancestralidade: tensões e potencialidades no campo da saúde. Rev R Thréske. 2021;10(1):143-70. https://doi.org/10.5380/rt.v10i1.79730
https://doi.org/10.5380/rt.v10i1.79730...
,2424 Venkatesh V. Impacts of COVID-19: a research agenda to support people in their fight. Int J Inf Manage. 2020;55:102197. https://doi.org/10.1016/j.ijinfomgt.2020.102197
https://doi.org/10.1016/j.ijinfomgt.2020...
), it was observed that children and adolescents used strategies focused on spirituality, an expressive way to encounter the feeling of love, comfort, support and protection from God, cooperating to cope and adaptation to stressful situations, including when it comes to health, care and humanization. The focus of spirituality was evidenced in a positive and adaptive way in this study, functioning as an active and significant resource associated with psychological well-being in various difficult circumstances and even in different countries, through the ability to deal with stressful situations.

However, it should be noted that, in general, there is no order or classification framework in relation to coping strategies, in a simplistic attempt to affirm them as good or bad, adaptive or maladaptive, as they can be changed according to over time and stress(2525 Chaves BL, Mendes TN. Estratégias de enfrentamento utilizadas para parar de fumar após diagnóstico de câncer: dois estudos de caso. Psicol Hosp (São Paulo) [Internet]. 2013[cited 2021 Jul 28];11(1):25-51. Available from: http://pepsic.bvsalud.org/pdf/ph/v11n1/v11n1a03.pdf
http://pepsic.bvsalud.org/pdf/ph/v11n1/v...
). The way to face a stressful situation, at any stage of a person’s life, involves subjective issues, availability of resources and effort, in an attempt to manage or deal with a stressor.

Furthermore, the effects of the pandemic, together with the situation of isolation, drastic changes in people’s routines and the threat of contracting the disease, can have a psychological impact(2626 Brooks SK, Webster RK, Smith LE, Woodland L, Wessely S, Greenberg N, et al. The psychological impact of quarantine and how to reduce it: rapid review of the evidence. Lancet. 2020;395:912-20. https://doi.org/10.1016/S0140-6736(20)30460-8
https://doi.org/10.1016/S0140-6736(20)30...
). Emotional reactions and behavioral changes have been solidly evidenced in the literature, directly or indirectly, such as fear, insecurity, worry, sadness, irritability, boredom, feelings of loneliness, lack of energy, feelings of hopelessness, anxiety, sedentary lifestyle, stress, in addition to of impatience(2727 Sallis JF, Pratt M. Multiple benefits of physical activity during the Coronavirus pandemic. Rev Bras Ativ Fís Saúde [Internet]. 2020 [cited 2023 Jul 28];25:1-5. Available from: https://rbafs.emnuvens.com.br/RBAFS/article/view/14268
https://rbafs.emnuvens.com.br/RBAFS/arti...
,2828 Golberstein E, Wen H, Miller BF. Coronavirus disease 2019 (COVID-19) and mental health for children and adolescents. JAMA Pediatr. 2020;174 (9):819-20. https://doi.org/10.1001/jamapediatrics.2020.1456
https://doi.org/10.1001/jamapediatrics.2...
).

Certainly, people were also negatively impacted on their psychological well-being, causing behavioral and emotional problems and negative feelings, especially during critical periods of the pandemic. Information about these reactions indicates the seriousness and severity of the situation experienced in the face of developments associated with this new virus.

Study limitations

Limitations in this study were the context and moment of the COVID-19 pandemic crisis, considering that not all people were vaccinated during the period during which the research was carried out. Furthermore, social isolation restrictions and other measures to prevent the spread of the virus created some obstacles to developing the study. These aspects limited the number of participants and prolonged the study time. It was not possible to return the transcripts to participants and provide feedback on the results.

Contributions to health

The results of this study present relevant information for the context of care for chronically ill children and adolescents, bringing important aspects that permeate their daily lives and their experience in the face of the COVID-19 pandemic.

The discussions presented about the negative feelings evidenced by participants in the face of social isolation as well as the coping and adaptation strategies used to alleviate suffering during this period, can help health professionals in the foundation of their work process, aiming at comprehensive care for children and adolescents with chronic illnesses.

This is valuable because, in addition to the weaknesses imposed by chronic illness, these professionals need to envision a context that not only involves the physical body, but also the psychological, social and spiritual dimensions. Thus, based on the perception of these experiences and strategies, the health team was able to reorganize the planning of their actions, including guidance to family members about their importance with children and adolescents in times of crisis, promotion of practices that alleviate suffering and elaboration of sensitive assistance to listen to this child audience’s needs.

FINAL CONSIDERATIONS

Children’s and adolescents’ experiences were observed through drawings as a mark of contemporary times, highlighting, through subjective aspects, a disease that hit the world and forced everyone to stay indoors. This lived aspect was reflected among participants, and brought to the fore the abrupt disruption of routines and, above all, the impediment to playing.

It was also presumed to observe that everyday life, full of restrictions, introduced coping strategies perceived in different ways, but seen as positive and adaptive in the face of an adverse experience, in which the stressor occurred as a result of the pandemic. Thus, understanding the experiences and coping strategies of children and adolescents with chronic illness demonstrated the expression of creative imagination, incorporated by subjective components, which brings to light an approximation with the reality perceived and interpreted in a context of the COVID-19 pandemic. Finally, it is suggested that this study be replicated post-pandemic, in order to understand the longer-lasting repercussions among participants.

  • Erratum
    In the article “Coping strategies for chronically ill children and adolescents facing the COVID-19 pandemic”, with DOI number: https://doi.org/10.1590/0034-7167-2023-0045, published in Revista Brasileira de Enfermagem, 2023;76(Suppl 2):e20230045, in the author:
    Where it read:
    Edna Maria Campelo ChavesI
    ORCID: 0000-0001-9658-0377
    How to cite this article:
    Custódio LL, Costa DCCO, Menezes CPSR, Figueiredo SV, Maia JA, Jorge MSB. Coping strategies for chronically ill children and adolescents facing the COVID-19 pandemic. Rev Bras Enferm. 2023;76(Suppl 2):e20230045. https://doi.org/10.1590/0034-7167-2023-0045
    It reads:
    Edna Maria Camelo ChavesI
    ORCID: 0000-0001-9658-0377
    How to cite this article:
    Custódio LL, Costa DCCO, Menezes CPSR, Figueiredo SV, Maia JA, Jorge MSB, et al. Coping strategies for chronically ill children and adolescents facing the COVID-19 pandemic. Rev Bras Enferm. 2023;76(Suppl 2):e20230045. https://doi.org/10.1590/0034-7167-2023-0045

AVAILABILITY OF DATA AND MATERIAL

https://doi.org/10.48331/scielodata.8CGEIP

  • FUNDING
    The Coordination for the Improvement of Higher Education Personnel (CAPES - Coordenação de Aperfeiçoamento de Pessoal de Nível Superior).

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Edited by

EDITOR IN CHIEF: Dulce Barbosa
ASSOCIATE EDITOR: Carina Dessotte

Publication Dates

  • Publication in this collection
    21 Nov 2023
  • Date of issue
    2023

History

  • Received
    08 Feb 2023
  • Accepted
    25 Sept 2023
  • Corrected
    28 Dec 2023
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