Communication Tools Used in Cancer Communication with Children: A Scoping Review

Simple Summary Despite the potential benefits of effective communication, telling children about unpredictable and life-threatening conditions such as cancer is challenging. This scoping review aimed to map the potential communication tools for children with cancer, their families, and healthcare professionals. We found 25 studies and 21 communication tools. Communication tools might support children to improve their knowledge and psychological outcomes. However, we found a lack of communication tools that were (1) accessible and validated, (2) designed for healthcare professionals, (3) targeted children, families, and healthcare professionals, and (4) were designed to meet the needs of children and families. This review identified areas for further research. Abstract Background: Although communication tools might guide healthcare professionals in communicating with children about cancer, it is unclear what kind of tools are used. This scoping review aimed to map the communication tools used in cancer communication among children with cancer, families, and healthcare professionals. Methods: A comprehensive search using PubMed (including MEDLINE), Embase, CENTRAL, PsycINFO, and CINAHL was conducted on 1 August 2021. We mapped communication tools and their impacts. Results: We included 25 studies (9 experimental studies and 16 feasibility studies) of 29 reports and found 21 communication tools. There was a lack of communication tools that were (1) accessible and validated, (2) designed for healthcare professionals, (3) targeted children, families, and healthcare professionals, and (4) were designed to meet the needs of children and families. Experimental studies showed that the communication tools improved children’s knowledge and psychological outcomes (e.g., health locus of control, quality of life, self-efficacy). Conclusion: We mapped communication tools and identified areas that needed further research, including a lack of tools to guide healthcare professionals and share information with children and families. Further research is needed to develop and evaluate these communication tools. Moreover, it is necessary to investigate how communication tools support children, families, and healthcare professionals.


Introduction
Worldwide, approximately 300,000 children under the age of 14 are diagnosed with cancer annually [1]. Cancer is a life-threatening condition [2] and children with cancer face health threats, and sometimes have stressful and traumatic experiences [3,4]. Effective

Study Design
We conducted a scoping review and reported following the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) Checklist [21]. Communication tools were defined as items or resources that help HCPs (e.g., physicians, nurses, child life specialists) and families (e.g., parents, caregivers) talk with children about their illness, including life-threatening conditions, and improve conversation among children, caregivers, and HCPs. We included any communication tools such as a checklist, book, brochure, computer game, playing with a doll, and drawing. Our protocol was also drafted following the preferred reporting items for systematic reviews and meta-analyses Protocols (PRISMA-P) [22] and published to the journal of BMJ open [23].

Eligibility Criteria
We have decided on the eligibility criteria following the PCC (Population/Concept/ Context) framework guided by the Joanna Briggs Institute [24]. We included studies which researched (Population) children between 2 and 18 years of age diagnosed with any type and stage of cancer; (Concept) communication tools to provide information related to cancer to children with cancer, including cancer diagnosis, life-threatening conditions, symptoms, treatments, prognosis, and psychosocial effects; and (Context) in the healthcare setting to communicate with children about cancer. We also included peer-reviewed original primary articles without limitations such as study design and languages. If we could not separate the data of children with cancer from adults, we included the studies in which over 80% of the population was under 18. We excluded the studies investigating tools without cancer-related information or educational elements (e.g., play interventions, symptom management), and interventions featuring distraction techniques to divert the child's attention from harmful stimuli (e.g., during painful procedures).

Information Sources and Search
We searched the following electronic bibliographic databases: PubMed (including MEDLINE), Embase, the Cochrane Central Register of Controlled Trials (CENTRAL), PsycINFO, and CINAHL on 1 August 2021 with no date/time, language, document type, and publication status limitations. The search strategies were developed by assistance of a medical information specialist, including terms relating to PCC (Supplementary File). Additionally, we checked reference lists of included articles and relevant reviews for this study [25]. We followed the Cochrane Handbook [26] and Cochrane's MECIR [27] to conduct the search, PRISMA-S [28], PRISMA-ScR [21], PRISMA guideline [29] to report the search, and PRESS guideline while peer-reviewing the search strategies [30].

Selection of Sources of Evidence
Search results were de-duplicated in EndNote X7 and imported to Rayyan, a web application, to screen the eligible studies [31]. Process of selection of studies has been shown in PRISMA flow diagram ( Figure 1). Two or more reviewers (NY, DS, MS, and KS) independently screened the eligible studies following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR) [21]. We discussed disagreements and resolved them.

Data Charting and Data Item
For the included studies, two or more reviewers (NY, DS, MS, and KS) independently charted the characteristics of included studies and communication tools into the datacharting forms developed by MS Excel for this study.

Critical Appraisal of Individual Sources of Evidence
Since this review aimed to map the existing evidence, we did not assess the critical appraisal of individual studies [21,32].

Data Synthesis
We summarized the characteristics of included studies, including the study design, the purpose of the study, settings, populations, intervention or concept, and broad findings. The characteristics and impacts of communication tools were mapped into Tables 1 and 2.

Selection of Sources of Evidence
Of 2964 citations retrieved, 1348 records were removed to avoid duplicates, and 1616 records were screened. We excluded 1458 records which did not meet the inclusion criteria, and 148 full texts were assessed, excluding 10 articles that were not retrieved. Finally, we included 25 studies out of 29 reports (Figure 1).

Synthesis of Results
The included studies showed 21 types of communication tools. Characteristics of communication tools are shown in Table 2.

Communication Tools with Children with Cancer
We found 21 communication tools that provide cancer-related information to children with cancer. Of these, 17 tools targeted children with cancer, and four targeted children and their families. There was no communication tool targeting the HCPs or all of these populations. Although most of the communication tools focused on coping with cancer and included provision of information and education, their contents varied. The main contents of communication tools were related to procedures and treatments [33,37,39,40,42,44], problem solving [51,57], fertility [46,49], disease [56], symptom management [48], tobacco use [41], reminders for examinations and a calendar [47], and multiple kinds of content [34,35,43,45,50]. One study was interviewed based on patients' experiences [53] and one did not describe the contents of the communication tools [36].

Impact of Communication Tools on Health Outcomes and Outcome Measurements
Frygner-Holm, 2020 [44] First story stem was based on imagination, the second was based on affect, and the third was medical play made up from variety of situations commonly experienced by children undergoing treatment for cancer   The main theme is that the patient hits the enemy character through the powerful use of weapons (white blood cells). The enemy character (a brain tumor) is targeted and destroyed, increasing the patient's health bar.

3D Graphical Imagery Therapy game
Children with a brain tumor,  1. The making of the puppet by the child, followed by the child interview using the puppets. 2. The use of puppets as a playful strategy during the interviews with hospitalized children with cancer was structured Interviews (54-71 min) using puppets Children with cancer (7-12 years old)

Researcher
The first author, an occupational therapist, conducted the interview.

Not reported
Making of the puppet and following the child's interview using the puppets Use-experience qualitative study

•
The use of puppets facilitated the children's expression of feelings and their verbal communication.

•
Children could express their experiences in the hospital to the researchers.
Tyc, 2003 [41] Educational video that discussed the short-and long-term physical and social consequences of tobacco use; late effects risk counseling focused on potential chemotherapy and radiation treatment-related toxicities that can be exacerbated by tobacco use and the survivors' increased vulnerability to tobacco-related health risks relative to their healthy peers

How to Use Communication Tools
Only one study specified access to the computer game (www.re-mission.net) (accessed on 20 September 2022) [37]. It is accessible to everyone free of charge. Five studies provided instructions regarding how to use the communication tools by facilitators, including psychologists [33,35,36,40,44]. Therapeutic play using a doll was conducted by nurses [42] and therapists [53]. Other studies did not mention the usage instructions. There was no tool that had accompanying instructions for families and HCPs.

Summary of Evidence
This scoping review identified 25 primary studies that evaluated the feasibility and effectiveness of communication tools. The studies in question were published between 2002 and 2021. Our review mapped existing communication tools and found 21 tools that provide cancer-related information to children with cancer. Experimental studies included in this review showed that communication tools might improve children's knowledge and may have positive psychological effects as a result of sharing cancer-related information interactively [33][34][35][36][37][39][40][41]. Due to limited guides [9,11] and well-designed training focused on healthcare communication for children [62], communication tools might help families and HCPs communicate cancer-related information to children. We have identified the types of communication tools that are lacking, and four areas that should be enhanced in future practice and research. There is a lack of communication tools that are (1) accessible and validated, (2) designed for HCPs, (3) target children, families, and HCPs, and (4) are designed to meet the needs of children and families.
First, accessible and validated communication tools are needed. Ranmal et al. 2008 suggested that interventions to enhance communication with children with cancer have not been widely and rigorously evaluated [25]. Even though more than ten years have passed since that systematic review was conducted, the results of this study also showed a lack of research that evaluated the effectiveness of communication tools. Additionally, the tools available were limited, and most studies did not describe how to use them. This gap might be due to the difficulty of including children in the study. When involving children in research, various factors can cause harm, such as stress due to participation in the study, revealing hidden or suppressed feelings and memories, expressing concerns, and worries about sharing [63]. Of course, research should be considered with regard to the ethical principles and issues of involving children [64]. At the same time, research involving children and families is needed to evaluate how communication tools are available and how they support children.
Second, communication tools to guide HCPs are needed. HCPs must show empathy for their patients and families [65]. However, telling a child they have a life-threatening illness can be burdensome for HCPs [66]. Recently, the complexity of communication with life-threatened children has been pointed out, and the need for research and guides on communication has been appealed [9]. To build child-and family-centered communication, it is suggested to follow a guide to communication strategies based on rigorous communication science [67]. Further research is needed to develop communication tools to guide HCPs and report the detail of how to use them to communicate with children with cancer.
Third, communication tools that target children, families, and HCPs are needed. Children with cancer could regain safety and control based on their knowledge about their bodies, cancer, and treatments [68]. Therefore, HCPs should communicate cancer-related information with children understandably, considering children's developmental stages. Nijhof et al., also argued that stimulating play behavior leads children with chronic illnesses to adapt to stressful conditions and promotes the development of emotional, cognitive, and social [69]. Communication aims to deliver information as well as to support children and families' coping and well-being. We found communication tools that introduced play elements, such as play therapy and computer games. These tools might not only help children understand their condition and cope with cancer, but may also promote their development. However, we did not find any tools that can be used commonly by all three populations: children with cancer, their families, and HCPs. Communication is a basic component needed in order to build a positive relationship among patients, families, and HCPs, resulting in the delivery of quality care [70]. Thus, we should consider the interaction of all these population, not just children, to communicate with children effectively. Further research is needed to develop and evaluate communication tools that target children, families, and HCPs.
Fourth, communication tools that are developed and evaluated to meet the needs of children and their families are needed. Previous research has indicated children have specific needs for sharing information, and different views are held among children, their parents, and HCPs [9,15]. Although children might need to know cancer-related information immediately at diagnosis, parents might control the flow information to their children due to their own emotional distress and belief [9,15]. If children perceive communication as parent centered, they might be disempowered. In contrast, children can be empowered to cope with cancer when they feel that HCPs address their information and developmental needs [68]. HCPs should understand families' struggles and collaborate with them to respect children's opinions. In this review, we found only a few tools developed involving children's opinions. People-centered health services are fundamental in healthcare [71]. Future research is needed to develop and evaluate communication tools that meet the needs of children and their families to enhance child-centered communication.

Strengths and Limitations
This review was conducted following the protocol to avoid the potential risk of bias. Moreover, we reported this review following PRISMA-ScR to improve its completeness and transparency. However, our scoping review has some limitations. First, this review searched in title only to identify the studies which met our inclusion criteria. We believe that these studies were sufficient to map the current situation. However, it is undeniable that some potential studies may have been overlooked. Second, due to the limited number of included studies, we could not classify the communication tools by age. Third, we did not assess the risk of bias or critical appraisal. Therefore, our research results might contain potential bias related to the included studies.

Implications for Practices and Future Research
Although the evidence is limited and communication tools might not apply to every situation, they might be useful and helpful in communicating cancer-related information with children. Still there are a variety of contents and types of communication tools, and HCPs should use them with consideration of whether they are appropriate for each child and family.
Further research is needed to develop and evaluate communication tools, which are (1) accessible and validated, (2) designed for HCPs, (3) target children, families, and HCPs, and (4) are designed to meet the needs of children and families. We also recommend simultaneously investigating the children's and families' experiences of using communication tools to understand how they support children. This would lead to deeper insights. Moreover, Future research is needed to focus on how HCPs communicate cancer-related information with children and report the detail of communication tools to be utilized in practice.

Conclusions
This scoping review aimed to map the existing communication tools that provide cancer-related information to children with cancer. Communication tools might support HCPs in providing effective communication and may positively impact how children and families cope with cancer. However, there is a lack of communication tools that are (1) accessible and validated, (2) for HCPs, (3) target children, families, and HCPs, and (4) are designed to meet the needs of children and families. Further research is needed to develop and evaluate these communication tools. Moreover, it is necessary to investigate how communication tools support children, their families, and HCPs.