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Introduction
“Comfort” is defined as a living being’s immediate experience augmented by the need for relief, calm, and transcendence in the four contexts of experience, namely, physical, psychospiritual, sociocultural, and environmental. Furthermore, it is in line with the holistic theory, where human beings have global responses to complex stimuli, and the physical body relates to mind, spirit, emotion, environment, and society 1,2.
Studies indicate that healthcare professionals’ knowledge of comfort is essential when monitoring children and adolescents undergoing cancer treatment 3. Its evaluation provides resources for managing these patients during treatment, aiming to improve their comfort and quality of life 4,5.
“Childhood and adolescence cancer” corresponds to a group of diseases that have in common the uncontrolled proliferation of abnormal cells, anywhere in the body, among children and adolescents, in the age group from 0 to 19 years 6,7. The most frequent types of cancer in childhood and adolescence are leukemia, followed by central nervous system tumors, and lymphomas. It is estimated that in Brazil, for each year from 2020 to 2022, approximately 8460 new cases of childhood and adolescence cancer will occur (4310 in males and 4150 in females) 7. Worldwide, it is estimated that approximately 400,000 new cases per year will be diagnosed among children and adolescents aged 0 to 19 years 8.
In addition, childhood and adolescence cancer causes harmful physiological changes to the body, which leads to difficulties in physical activities, functional performance, and social interaction. Even when treated successfully, it may have unfavorable physical and psychological consequences for the development of children and adolescents according to their age 9,10.
Surgery, chemotherapy, and radiotherapy, which are frequent modalities in oncologic therapy for children and adolescents 6,11-13, besides their expected benefits for the management and potential cure of the disease, may lead to adverse effects, such as clinical, functional, and labor changes in biopsychosocial aspects. These effects may result in difficulty sleeping and eating, nausea, pain, diarrhea, preoccupation, and sadness 10,14. These changes trigger distress and can escalate to impact comfort and lead to negative outcomes in the adaptation of children and adolescents to oncologic treatment 3.
Additionally, the evaluation of comfort provides healthcare professionals with more effective assistance by prioritizing health activities in patient care and improving the provision of individualized and comprehensivve care within the clinical process 15. Therefore, in the face of the effects that the oncologic treatment can have on the comfort of children and adolescents with cancer, the search for knowledge of this fact becomes relevant in the hope of developing strategies to promote the comfort of this population during therapy 3-5.
Thus, the following research question emerged: What is the scientific evidence available regarding the effects of cancer treatment on the comfort of children and adolescents with cancer? Therefore, this study aimed to map and examine the scientific evidence regarding the effects of cancer treatment on the comfort of children and adolescents with cancer.
Materials and Methods
This scoping review revolves around the effects of cancer treatment on the comfort of children and adolescents with cancer. For this study, a protocol was created and registered in the Open Science Framework (OSF) under the code OSF.IO/DWY9F. The OSF is an online tool that promotes workflow for researchers, promoting improvements in replicability, transparency, and research data management practices 16.
The methodological reference used was the Joanna Briggs Institute (JBI) to map the evidence that supports a certain research area. In other words it enables the possibility of describing, summarizing, and synthesizing knowledge based on the systematic selection and condensation of the health literature, in addition to identifying gaps in existing research 17. To identify scoping reviews with an objective similar to this study’s, a search was carried out in the following databases: JBI Clinical Online Network of Evidence for Care and Therapeutics (COnNECT+), Database of Abstracts of Reviews of Effects (Dare), and The Cochrane Library. The results indicated that no scoping reviews on the subject existed.
This report has been revised according to the Preferred Reporting Items for Systematic Reviews-Extension for Scoping Reviews (PRISMA-ScR) checklist and operationalized in six phases, namely: 1. Research question development; 2. Inclusion and exclusion criteria definition; 3. Keyword identification and Article search strategy design; 4. Database selection; 5. A screening and selection; 6. Article mapping and result synthesis 18,19.
The PCC strategy, a mnemonic acronym that helps identify the key topics, where “P” stands for population, “C” for concept, and “C” for context, was used to develop the review question 17. In this study, the following definitions were used: P - children and adolescents with cancer; C - comfort; C -cancer treatment. For the study search and selection, the following question was established: What is the scientific evidence regarding the effects of cancer treatment on the comfort of children and adolescents with cancer?
Regarding the article inclusion criteria, abstracts and objectives should correspond to the proposed subject-the effects of cancer treatment on the comfort of children and adolescents with cancer-, national and international studies, with qualitative, quantitative, and mixed methods approaches.
The exclusion criteria were literature review articles for being secondary studies, studies that included young adults in the sample, and articles that described the opinion of healthcare professionals, that is, children and adolescents were not included. No time cut was applied to the research to provide the largest number of studies on the subject.
The PCC strategy was used to search for results using controlled terms from the Medical Subject Headings (MeSH) of the Health Sciences Descriptors (DeCS), along with uncontrolled terms: “criança”/“child”; “adolescente”/“adolescent”; “neoplasias”/“neoplasms”; “câncer”/“cancer”; “oncologia”/“medical oncology”; “tumor”/“tumor”; “conforto do paciente”/“patient comfort”; “bem-estar da criança”/“child welfare”; “bem-estar do adolescente”/“adolescent welfare”.
The search strategy was developed using the Boolean operators “AND” and “OR”, as follows: (criança OR adolescente) AND (conforto do paciente OR bem-estar da criança OR bem-estar do adolescente) AND (neoplasias OR oncologia OR câncer OR tumor); (child OR adolescent) AND (patient comfort OR child welfare OR adolescent welfare) AND (neoplasms OR medical oncology OR cancer OR tumor).
The literature research was conducted in the following electronic information resources: Virtual Health Library (VHL); National Institutes of Health’s National Library of Medicine (PubMed); Cumulative Index to Nursing & Allied Health Literature (Cinahl); SciVerse Scopus; Latin American and Caribbean Literature on Health Sciences (Lilacs); Web of Science; Google Scholar, and references in the gray literature, available at greylit.org. This a website provides a list of recognized sources for this type of search and reference lists of selected relevant studies. The JBI recommends searching all reference lists of selected studies to identify any potential additional studies not mapped in the strategy used 17.
The searches were performed from September to October 2021, by two reviewers in a paired and independent process. The search results of both were compared in the electronic information resources, verifying the differences among the findings to encompass the largest number of information relevant to the subject. To verify if there were subsequent publications in the chronological period, a new search was performed in January 2022. After checking the studies and analyzing the results, the reviewers reached a consensus and listed the studies that comprised the final sample of this review. It was not necessary to request additional information or data from the authors of the selected studies.
The screening and selection process of evidence sources used was based on PRISMA-ScR 18, considering the four proposed steps namely: Identification, screening, eligibility, and inclusion, which aim to contribute to the quality of results in the generation of knowledge. The selected articles were read in full, identifying more precisely their relevance to the research, which resulted in the final number of texts included in the review.
The final extraction and delimitation steps of key information from the evidence were followed based on numerical descriptive analysis to categorize the studies and the selected evidence for thematic analysis. The aim was to summarize the information and align it to the study objective and guiding question.
The data from the selected articles were extracted with a tool developed by the researchers according to the JBI guidelines 17,19, which included authors, year of publication, study country, language, design, participants, treatment and the effects of cancer treatment on the comfort of children and adolescents with cancer. The studies were grouped and the synthesized data were discussed with the literature.
All ethical and scientific requirements for the research were respected based on legal regulations. We ensured methodological rigor in the data treatment and presentation and faithfulness of the information contained in the original documents that supported the results.
Results
The search resulted in 4295 articles selected, of which 52 were discarded for being duplicates in the information resources, and 4243 articles remained for title and abstract reading. In this new step, 4125 articles were excluded, which resulted in a total of 118 articles for selection regarding the inclusion and exclusion criteria. Of these, 32 articles were selected for reading in full, excluding 12 for not specifying the effects of cancer treatment on the comfort of children and adolescents with cancer. Thus, in the final sample, 20 articles were obtained to map evidence according to this study’s objective, as shown in Figure 1.
Source: Research data and adapted from 18.
Figure 1 Article screening process: Identification, screening, eligibility, and inclusion. Curitiba, Paraná, Brazil, 2021
In this review, the selected studies were published between 2007 and 2020. Of the 20 (100 %) published, nine (45 %) were Brazilian studies published in Portuguese and carried out between 2009 and 2020 3,20-27. The remaining 11 (55 %) studies are international articles published in English, with a prevalence of two (10 %) in Sweden 28,29, five (25 %) in the United States 30-34, one (5 %) in Indonesia 35, one (5 %) in Australia 36, one (5 %) in Turkey 4, and one (5 %) in Canada 37.
Regarding study design, 12 (60 %) were qualitative 4,20-28,33,35 studies, and the remaining eight (40 %) were identified as follows: Two (10 %) were retrospective studies 31,32, three (15 %) were cross-sectional studies 3,36,37, one (5 %) was a mixed methods study (29), one (5 %) was a case-control study 34, and one (5 %) was a case study (30). Table 1 presents the characteristics of the selected studies.
Table 1 Characterization of the selected studies according to authors, year, country of publication and language, and design. Curitiba, Paraná, Brazil, 2021
| Article | Authors | Country/year/language | Design |
| I 27 | Guimarães TM, Pacheco STA, Nunes MDR, Silva LF | Brazil/2020/Portuguese | Qualitative |
| II 30 | Levy K, Grant PC, Kerr CW | The United States/2020/English | Case study |
| III 4 | Bicakli DH, Sari HY, Yilmaz M, Cetingul N, Kantar M | Turkey/2019/English | Qualitative |
| IV 31 | Chen EL, Yoo CH, Gutkin PM, Merriot DJ, Avedian RS, Steffner RJ, et al. | The United States/2019/English | Retrospective |
| V 3 | Leandro TA, Silva VM, Lopes MVO, Guedes NG, Nunes MM, Sousa TM, et al. | Brazil/2018/Portuguese | Cross-sectional |
| VI 25 | Sá-França JFR, Costa SFG, Lopes MEL, Nóbrega MML, Batista PSS, Oliveira RC | Brazil/2018/Portuguese | Qualitative |
| VII 35 | Mahayati SL, Allenidekania, Happy H | Indonesia/2018/English | Qualitative |
| VIII 32 | Warma S, Friedman DL, Stavas MJ | The United States/2017/English | Retrospective |
| IX 20 | Freitas NBC, Santos JLF, Estanislau AM, Palitot RM, Fonsêca PN | Brazil/2016/Portuguese | Qualitative |
| X 33 | Jacobs S, Perez J, Cheng YI, Sill A, Wang J, Lyon ME | The United States/2015/English | Quantitative |
| XI 21 | Silva GM, Kameo SY, Sawada NO | Brazil/2014/Portuguese | Qualitative |
| XII 28 | Ångström-Brännström C, Norberg A | Sweden/2014/English | Qualitative |
| XIII 22 | Gomes IP, Lima KA, Rodrigues LV, Lima RAG, Collet N | Brazil/2013/Portuguese | Qualitative |
| XIV 36 | McCarthy M, Glick R, Green J, Plummer K, Peters K, Johnsey L, et al. | Australia/2012/English | Cross-sectional |
| XV 26 | Lombardo MS, Popim RC, Suman A | Brazil/2011/Portuguese | Qualitative |
| XVI 23 | Cicogna EC, Nascimento LC, Lima RAG | Brazil/2010/Portuguese | Qualitative |
| XVII 37 | Zupanec S, Jones H, Stremler R | Canada/2010/English | Cross-sectional |
| XVIII 24 | Ribeiro AC, Coutinho RM, Araújo TF, Souza VS | Brazil/2009/Portuguese | Qualitative |
| XIX 29 | Nilsson S, Finnström B, Kokinsky E, Enskär K | Sweden/2009/ English | Mixed methods |
| XX 34 | Windich-Biermeier A, Sjoberg I, Dale JC, Eshelman D, Guzzetta CE | The United States/2007/English | Case-control |
Source: Own elaboration based on the research data.
Based on the selected studies, a prevalence of participants was found in 11 (55 %) studies with children and adolescents 3,20-25,29,31,32,34. The other nine studies (45 %) were carried out with three (15 %) family members, children, and adolescents 4,36,37, three (15 %) with adolescents 26,27,35, two (10 %) with adolescents and family members 30,33, and one (5 %) with children and their family members 28.
Regarding the treatment modality provided to the children and adolescents in each study, of the 20 (100 %) articles, 11 (55 %) addressed antineoplastic treatment 3,4,20,22,23,26,28,34-37, three (15 %) general oncology 21,24,29 and did not specify the treatment modality; two (10 %) radiotherapy 31,32, three (15 %) palliative care 27,30,33, and one (5 %) antineoplastic treatment, surgery, and radiotherapy 25. Regarding the effects of cancer treatment that affect the comfort of children and adolescents with cancer, 20 manifestations were evidenced in this population. Table 2 presents the synthesis of the evidence mapped in the selected studies.
Table 2 Synthesis of the evidence regarding the participants and the effects of cancer treatment on the comfort of children and adolescents with cancer. Curitiba, Paraná, Brazil, 2021
| Article | Participants/study sample | Treatment | Treatment effects |
| I 27 | Nine adolescents, aged 12 to 20 years | Palliative care | Nausea, difficulty eating, emesis, modified body image, suffering, withdrawal from formal education, withdrawal from family and friends |
| II 30 | One adolescent aged 15 and their family member | Palliative care | Fear |
| III 4 | Fourteen mothers and three children and adolescents aged 11 months to 18 years | Antineoplastic | Difficulty eating, anxiety, fear, and modified body image |
| IV 31 | Twenty children and adolescents aged 17.9 years on average | Radiotherapy | Pain and dyspnea |
| V 3 | One hundred ninety-two children and adolescents aged 11 years on average | Antineoplastic | Crying, feeling cold, fear, and not feeling at ease with the situation |
| VI 25 | Eleven children and adolescents aged 7 to 11 years | Antineoplastic, surgery, and radiotherapy | Fear, sadness, distress, pain, and suffering |
| VII 35 | Nine adolescents aged 14 to 18 years | Antineoplastic | Withdrawal from family and friends, nausea |
| VIII 32 | Fifty children and adolescents aged 0 to 18 years | Radiotherapy | Pain and dyspnea |
| IX 20 | Four children and adolescents aged 9 to 13 years | Antineoplastic | Shame and sadness |
| X 33 | Seventeen adolescents aged 14 to 21 years and their family members | Palliative care | Fear and pain |
| XI 21 | Forty children and adolescents aged 10 to 18 years | *General cancer treatment | Withdrawal from formal education |
| XII 28 | Nine children aged 3 to 9 years and their family members | Antineoplastic | Fear, withdrawal from family and friends, and pain |
| XIII 22 | Seven children and adolescents aged 6 to 11 years | Antineoplastic | Difficulty eating and length of hospitalization |
| XIV 36 | One hundred thirty-five children and adolescents aged 5 months to 19 years and their family members | Antineoplastic | Distress, pain, and suffering |
| XV 26 | Seven adolescents aged 11 to 18 years | Antineoplastic | Pain, alopecia, and nausea |
| XVI 23 | Ten children and adolescents aged 8 to 18 years | Antineoplastic | Pain, nausea, alopecia, and modified body image |
| XVII 37 | Sixty-four children and adolescents aged 4 to 18 years and their family members | Antineoplastic | Pain, difficulty eating, nausea, emesis, and fear |
| XVIII 24 | Seven children and adolescents aged 6 to 14 years | *General cancer treatment | Pain, fear, and preoccupation |
| XIX 29 | Forty-two children and adolescents aged 5 to 18 years | *General cancer treatment | Distress and pain |
| XX 34 | Fifty children and adolescents aged 5 to 18 years | Antineoplastic | Distress, pain, and fear |
Note. *Studies that did not specify the treatment provided to the participants.
Source: Own elaboration based on the research data, 2021.
After mapping the evidence related to the effects of cancer treatment, we grouped them by citation frequency of the selected studies to analyze the prevalence of these events in the comfort of children and adolescents with cancer. It was found that, of the 20 (100 %) manifestations evidenced, the ones that became more prevalent among the studies were pain (n = 12; 60% 23-26,28,29,31-34,36,37), fear (n = 9; 45% 3,4,24,25,28,30,33,34,37), nausea (n = 5; 25% 23,26,27,35,37), difficulty eating (n = 4; 20 % 4,22,27,37), and distress (n = 4; 20 % 25,29,34,36), according to the data presented in Table 3.
Table 3 Frequency and percentage of the prevalence of the effects of cancer treatment on the comfort of children and adolescents with cancer in the selected studies. Curitiba, Paraná, Brazil, 2021
| The effects of cancer treatment | Frequency (n = 20) | |
|---|---|---|
| Absolute (f) | Relative (%) | |
| Pain 23-26,28,29,31-34,36,37 | 12 | 60 |
| Fear 3,4,24,25,28,30,33,34,37 | 9 | 45 |
| Nausea 23,26,27,35,37 | 5 | 25 |
| Difficulty eating 4,22,27,37 | 4 | 20 |
| Distress 25,29,34,36 | 4 | 20 |
| Modified body image 4,23,27 | 3 | 15 |
| Suffering 25-27 | 3 | 15 |
| Withdrawal from family and friends 27,28,35 | 3 | 15 |
| Withdrawal from formal education 21,27 | 2 | 10 |
| Sadness 20,25 | 2 | 10 |
| Dyspnea 31,32 | 2 | 10 |
| Alopecia 23,26 | 2 | 10 |
| Emesis 27,37 | 2 | 10 |
| Crying 3 | 1 | 5 |
| Preoccupation 24 | 1 | 5 |
| Feeling cold 3 | 1 | 5 |
| Shame 20 | 1 | 5 |
| Hospitalization time 22 | 1 | 5 |
| Anxiety 4 | 1 | 5 |
| Not feeling at ease with the situation 3 | 1 | 5 |
Source: Own elaboration based on the research data, 2021.
Discussion
The objective of this scoping review was to map and examine the scientific evidence regarding the effects of cancer treatment on the comfort of children and adolescents with cancer. For this purpose, 20 primary studies published in various national and international settings were selected through informational resources, which indicates that nurses need to analyze the evidence presented. Moreover, it is important to relate them to the impact of changes on the comfort of children and adolescents with cancer undergoing treatment to obtain input for treatment strategies to manage the manifestations in the aforementioned population and improve the adaptation of patients throughout the cancer treatment.
Of all the articles, 12 (60 %) reported pain as the most prevalent effect of cancer treatment in children and adolescents with cancer 23-26,28,29,31-34,36,37. These frequencies can be compared with the results of a study in Lebanon 38, in which pain was the most frequent and debilitating symptom. Thus, this symptom may lead to changes in the well-being of this population and in their adaptation to treatment.
Likewise, other evidence reports that the pain experienced by children and adolescents with cancer causes an unpleasant sensation, of a multi-factor origin, which is difficult to manage, and may lead to physical and emotional changes 11,12,39. Thus, the management of pain represents a challenge for professionals who work in the area, especially in its identification and management prior to the cancer treatment to which this population is submitted 13-15,39.
In addition to pain, in nine (45 %) mapped studies, fear had a significant frequency in the effects of cancer treatment on the comfort of children and adolescents 3,4,24,25,28,30,33,34,37. Fear means, for this population, the daily overload of negative feelings and emotions, uncertainties, and insecurity of being in an unknown world, where suffering emerges in their lives unexpectedly and with no prospect of coming to an end 5,14.
It is highlighted that the findings related to fear coincide with those of a review study, which investigated the change in the comfort of children and adolescents in critical conditions 15. The authors stated that intensive treatment in the hospital environment, the absence of close family members, and invasive procedures trigger the feeling of fear in these patients 15.
Another effect of cancer treatment that prevailed in the selected and mapped articles was nausea, which reached a citation frequency in five (25 %) of the studies 23,26,27,35,37. Nausea is one of the signs and symptoms that cause increased discomfort to patients in cancer treatment, specifically secondary to gastrointestinal toxicities stemming from antineoplastic therapy. They can affect the nutritional status, hydro-electrolyte balance, well-being, and quality of life of children and adolescents with cancer 40.
These findings corroborate the results of a symptom management study conducted with family caregivers of children and adolescents with cancer undergoing antineoplastic treatment 41. The authors stated that nausea was one of the most prevalent symptoms in the pediatric population, leading to changes in eating patterns, inappetence, and weight loss 41.
In addition, difficulty eating was present in four (20 %) of the studies 4,22,27,37. In this context, difficulty eating is understood as any problem that negatively affects the process of healthcare professionals, parents, or caregivers to supply food or nutrients to their children or patients 42.
Children and adolescents are used to a particular type of food at home, which regards their wishes and desires, unlike what happens in the hospital environment. The supply of inappropriate food by the family and the hospital rules regarding meals are the main difficulties, often becoming a limiting factor for accepting adequate meals 43.
Therefore, these findings corroborate a study conducted on the evaluation of the perception of parents of children diagnosed with cancer regarding the food provided in the hospital environment 44. The authors demonstrated that 76.5 % of children did not like the food taste, and 52.9 % did not like the appearance of the food plating. It has been demonstrated that an unbalanced diet can cause discomfort to patients and increase the risk of malnutrition 44.
In addition to the difficulty eating, another effect on treatment that prevailed in the selected and mapped articles was distress, which had a citation frequency in four (20 %) of the studies 25,29,34,36. Distress is triggered because children and adolescents with cancer often experience a severe and uncertain process of illness, which represents the unknown, especially because of the treatment and separation from their parents and siblings when hospitalization is necessary 25,45.
Thus, these findings are consistent with a pilot intervention study conducted in Brazil with children and adolescents with type 1 diabetes mellitus, which used a therapy toy versus standard guidelines for administering insulin 46. The authors identified that decreased parental involvement with children and adolescents in diabetes management may cause psychosocial issues such as depression symptoms and distress 46.
Finally, regarding the cancer treatment modality 11 (55 %) of the articles addressed antineoplastic therapy 3,4,20,22,23,26,28,34-37. This therapy is the most prevalent treatment modality for childhood and adolescence cancer, leading to immediate responses, since pediatric tumor cells are sensitive to antineoplastic therapy 47,48. The child or adolescent with cancer receives antineoplastic therapy at the hospital level -inpatient or outpatient- or at home under the supervision and close monitoring of healthcare professionals 47-50.
Evidence is consistent with a retrospective study that analyzed the clinical and epidemiological profile of children and adolescents with cancer 51. From the 146 medical records analyzed, 65 (45 %) of the patients were specifically on cancer treatment. Thus, the authors stated that antineoplastic therapy was the most prevalent therapy in this study, compared with other treatment modalities for this population, such as radiotherapy, surgery, and hematopoietic stem cell transplantation 51.
Finally, this research has as a limitation the search in seven electronic informational resources with the selected descriptors and keywords. They may not have expanded the number of eligible studies for this research, even though the terms selected cover the universe of the effects of cancer treatment on the comfort of children and adolescents with cancer.
Therefore, this review highlights the need for studies that develop indicators of the effects of cancer treatment on this population to operationalize the evaluation of the effectiveness of care provided in clinical practice. Enabling adaptation and coping by children and adolescents with cancer undergoing treatment, based on the involvement of these patients’ healthcare professionals, family members, and close friends will provide them with well-being.
Conclusions
This study’s findings provided scientific evidence regarding the effects of cancer treatment on the comfort of children and adolescents with cancer. Pain, fear, nausea, difficulty eating, and distress were prevalent. These effects lead to suffering, low adherence to cancer treatment, and worsened quality of life in this population. Regarding the treatment, it was found that the one with the highest prevalence among the analyzed studies was antineoplastic therapy.
For this reason, the results presented in this study may raise nurses, awareness of the effects on the comfort of children and adolescents with cancer during cancer treatment, as they are vulnerable in the care settings. Therefore, comfort is an aspect that should be routinely evaluated in clinical practice to promote the well-being of children and adolescents with cancer.
