Child and Adolescent Cancer Communication Preferences for Information Exchange: A Meta-Synthesis

Child and Adolescent Cancer Communication Preferences for Information Exchange: A Meta-Synthesis | Authorea try { document.documentElement.classList.add('js'); } catch (e) { } var _gaq = _gaq || []; _gaq.push(['_setAccount', 'G-8VDV14Y67G']); _gaq.push(['_trackPageview']); (function() { var ga = document.createElement('script'); ga.type = 'text/javascript'; ga.async = true; ga.src = ('https:' == document.location.protocol ? 'https://ssl' : 'http://www') + '.google-analytics.com/ga.js'; var s = document.getElementsByTagName('script')[0]; s.parentNode.insertBefore(ga, s); })(); Skip to main content Preprints Collections Wiley Open Research IET Open Research Ecological Society of Japan All Collections About About Authorea FAQs Contact Us Quick Search anywhere Search for preprint articles, keywords, etc. Search Search ADVANCED SEARCH SCROLL This is a preprint and has not been peer reviewed. Data may be preliminary. 29 August 2025 V1 Latest version Share on Child and Adolescent Cancer Communication Preferences for Information Exchange: A Meta-Synthesis Authors : Ginny Schulz 0000-0001-6522-5268 [email protected] , Katherine Patterson Kelly , and Kimberly Pyke-Grimm 0000-0001-6396-7460 Authors Info & Affiliations https://doi.org/10.22541/au.175647876.69938757/v1 190 views 174 downloads Contents Abstract Supplementary Material Information & Authors Metrics & Citations View Options References Figures Tables Media Share Abstract The communication needs of children and adolescents (C&A) with cancer are not being met. Understanding C&A communication experiences and preferences from their perspective is critical to patient-centered care and health outcomes. Our objective was to systematically review and synthesize qualitative data to describe C&A <18 years of age self-reported preferences for cancer communication specific to information exchange. We conducted a search in PubMed, PsycINFO, CINAHL, and SCOPUS databases and applied Joanna Briggs Institute qualitative review methods. Studies with participants < 18 years of age with childhood cancer were included in this synthesis. 3213 articles were identified with 55 articles included. 266 findings related to preferences for exchanging information were extracted from 43 studies. The findings were aggregated into six synthesized findings: 1) How I receive information, 2) When I want information, 3) How my healthcare team shares information with me, 4) How my parents share information with me, 5) How I get information, and 6) When I do not want information. This meta-synthesis highlights C&A with cancer have individual preferences for information exchange related to their treatment and can voice their preferences. Evidence-based practice recommendations were identified to meet their communication needs and preferences. Introduction Across the globe communication needs of those being treated for cancer are not being met. 1-3 Understanding and incorporating communication needs and preferences into chronic illness treatments such as cancer is critical to patient-centered care and patient health outcomes. 4-5 Information exchange is one function of cancer communication and includes seeking and giving information about one’s illness, treatment and prognosis. 4-5 This communication function is important to patient’s gaining knowledge of their illness, developing interpersonal relationships, reducing uncertainty, patient satisfaction, and assisting in decision-making. 4-5 For children and adolescents (C&A) less than 18 years of age, their preferences for information exchange about their cancer treatment can be different than their parents or clinicians. 6-8 Furthermore, although information exchange can assist in decision-making, it is critical to understand C&A preferences for exchanging information distinct from their decision-making preferences. As early as 1993, Ellis and Leventhal found C&A want to know information about their cancer and treatment, but they do not want to make their own decisions about curative therapy. 6 To meet the information needs of C&A with cancer, it is important we identify their specific preferences for what, who, when and how they wish to exchange information throughout their illness trajectory, from diagnosis through to end of life. Much qualitative research has been conducted worldwide to better understand C&A cancer communication preferences. Lin and colleagues conducted a qualitative review describing C&A experiences and preferences for communicating with clinicians during cancer treatment. 9 Recognizing the triadic nature of pediatric cancer communication (C&A, parent, and clinician), 10 our systematic review expands on their work by synthesizing qualitative evidence of C&A voices regarding preferences for engagement in their treatment communication beyond clinicians. In this paper we share findings of C&A preferences for treatment communication related to information exchange, with the synthesis of their preferences on treatment decision making reported elsewhere. 11 Methods We used Joanna Briggs Institute (JBI) methods for this systematic review and qualitative meta-synthesis to produce evidence-based practice recommendations for C&A cancer treatment communication related to information exchange. 12 A detailed description of our methods can be found elsewhere. 11 The protocol was registered with PROSPERO (ID: CRD42021219107). Search strategy A medical librarian searched PubMed, PsycINFO, CINAHL, and SCOPUS databases in November 2019, and updated the search in November of 2021 and 2022, and again in February 2024 according to a search strategy focused on cancer treatment communication (Supplement 1). There was no limitation on date range. Study selection We selected studies that included participants with a childhood cancer diagnosis who were less than 18 years of age, used qualitative or mixed methods research, and were written in the English language. If the sample and qualitative findings of those less than 18 years of age could not be separated from those greater or equal to 18 years of age we excluded them. Two reviewers (KPG, GS or KK) independently screened the abstract titles and abstracts according to these inclusion criteria. Discrepancies were reviewed and resolved through discussion and a full-text review was conducted to verify the article met inclusion criteria. Two reviewers (KPG, GS or KK) independently conducted critical appraisal assessments of selected articles using JBI’s critical appraisal instrument to assess methodological quality and dependability of each study’s findings. 12 The 10 questions included in the instrument relate to research methodology and methods the researchers used in their study (Supplement 2). Disagreements were reviewed and resolved by the third reviewer to reach consensus. Articles meeting our pre-determined selection critical appraisal criteria were included in our final synthesis (Supplement 2). Data extraction We only extracted qualitative findings self-reported by C&A with cancer as our aim was to capture the voice of C&A. A finding was defined as the authors’ reported results and related illustration(s). 13 An illustration could have been a participant quotation or field observation that represented their findings. A detailed description of our coding of extracted findings is reported elsewhere with a complete list of context codes and definitions in Supplement 3. 11 Each finding was coded with a lower-level code (or category) based on the author’s reported results. Coding assignments were independently validated by a second coder (KPG, GS or KK). Consensus was used to resolve any discrepancies. JBI appraisal methods were used to rate credibility of each extracted finding. 13 Each finding was rated according to one of these three levels: 1) unequivocal (finding was supported by an indisputable illustration), 2) credible (finding was accompanied by an illustration that was questionably related) and 3) unsupported (finding was not supported, or related illustration was not provided). Data synthesis The lower-level codes (or categories) were reviewed, discussed, and integrated into higher-level codes. These higher-level codes are our synthesized findings or evidence-based practice recommendations. An overall quality rating (high, moderate, low, or very low) was provided using the Conqual approach, with a high rating reflecting more confidence in the finding than a very low rating. 13 This overall rating accounted for the credibility score assigned to each finding as well as the dependability score assigned to each study based on critical appraisal of their methods. This paper reports on our findings identified as information exchange (i.e. C&A preferences for receiving, getting, or sharing information). Results We used PRISMA to report our findings. 14 Of the 3213 articles identified, 232 moved to full-text review after reviewing the article titles and abstracts (Figure 1). 177 were excluded after full-text review and 55 met the inclusion criteria and methodological quality criteria to include in the review. Forty-four (80%) of the articles included information exchange related findings and are reported below. The methodological quality of the 44 information exchange related articles is reported in Table 1. Of the ten critical appraisal criteria, appraisal criteria 1 (congruity between philosophical perspective and research methodology), 6 (locating the researcher culturally and theoretically) and 7 (influence of the researcher on research and vice-versa) were reported less regularly across studies. Article Characteristics Table 2 reports a summary of the studies with information exchange related findings. The articles were published between 2001 and 2023. Eighteen countries are represented in the studies. The selected studies used a variety of qualitative research methods including descriptive, focused ethnography, grounded theory, and phenomenology. Researchers reported using a range of data collection methods: one-on one-interviews, online blogs, video recordings, focus groups and observations. Review findings There was a total of 266 findings (235 unequivocal, 4 equivocal and 27 unsupported). Findings related to information exchange were aggregated into six synthesized findings and included 15 categories that constitute the basis for practice recommendations. The synthesized findings, categories and Conqual Scores of C&A cancer communication preferences for information exchange findings are summarized in Table 3. Exemplar illustrations representing C&A voices of these findings and categories are provided in Table 4 (see Supplement 4 for the complete list of illustrations). Synthesized finding 1.0 . How I receive information (67 findings). C&A wanted to receive information in an honest, straightforward, and positive manner. They often received information with their family present and disliked when there were delays in them receiving information. These experiences and preferences were represented in school-aged and adolescent findings. Category 1.1: I want honest straightforward, and understandable information (39 findings from 20 articles). 7-8,15-32 C&A desired open and honest communication about their diagnosis and bad news. In most cases it was important for the information to be presented to them in simple and plain language, avoiding jargon. C&A recommended considering drawings, pictures, or cartoons to relay relevant information. This allowed the C&A to actively participate. There was an individual preference for the pacing of information versus receiving it all at once. Category 1.2: Communicating in a positive manner is important to me (12 findings from 9 articles). 15,20-22,31,33-36 C&A preferred communication with them to be calm, compassionate, and have a positive tone. They acknowledged when they receive information about bad news or undesirable procedures in this positive manner it gives them hope and encouragement. Category 1.3: I receive information with my family (9 findings from 7 articles). 18,22,23,26,32,34,37 C&A described their experiences of receiving information with their family. For many it was important that they received the diagnosis and bad news together so that they could support one another. Category 1.4: I do not like delays in receiving information (7 findings from 5 articles). 17-19,23,29 C&A appreciated hearing information about their diagnosis and treatment sooner than later so that they could prepare and have time to adapt. Some C&A found the delay resulted from the clinicians speaking directly to their parents first rather than speaking directly to them. Synthesized finding 2.0: When I want information (57 findings). C&A mostly wanted information from their healthcare team (HCT) or parents. Differences between C&A were noted in terms of the type, amount, how and when they received the information. The preschool, school-aged, and adolescent age groups described this finding. Category 2.1: I want information (46 findings from 23 articles). 7-8,15,18-19,21,23-24,26,29-31,33,36,38-46 In general, C&A wanted to know about their disease and what was going to happen. For some this occurred as early as at the time of diagnosis or when there was bad news to be shared. Younger children wanted more basic information in terms of understanding the name of their disease and why they needed to be in the hospital. C&A described how having information prevents them from feeling sad and helps them to be calm and prepare themselves. Category 2.2: My information needs change with time (11 findings from 6 articles). 17-18,26,42,46-47 Some C&A desire for information changed over time, wanting additional and different types of information throughout their treatment course. Initially, they perceived information about their disease and treatment to be scary and confusing but with time they wanted more. Adolescents especially sought information from different sources over time. Synthesized finding 3.0: How my HCT shares information with me ( 45 findings). This finding includes how C&A felt informed and satisfied with the information they received and how the delivery of information was important. It was described primarily by the school-aged and adolescent age groups Category 3.1: My doctor gives me information (31 findings from 20 articles). 7-8,15,17-18,21,23-24,26-27,29,32-34,37,42-43,46,48-49 C&A discussed how they preferred to receive information directly from the HCT as they were the experts. It was important they receive direct, open and honest communication from their HCT, preferably in-person. Category 3.2: My HCT did not tell me (7 findings from 6 articles). 15,23,32-34,50 C&A described times information was not given to them by their HCT. Examples included parents requesting the doctor not provide specific information, not having access to their HCT, or their HCT not being approachable nor answering their questions. Some C&A thought their questions were not important enough to ask the HCT. Category 3.3: My nurse gives me information (7 findings from 7 articles). 8,17,23,29,32,35,49 C&A described how they viewed nurses as an important source of information. They felt comfortable talking with nurses and felt nurses explained things in an understandable way. C&A perceived this open and honest communication as a way of building a relationship and showing the nurse cared. Synthesized finding 4.0: How my parents share information with me ( 39 findings). C&A identified their parents as someone who gives treatment information to them, sometimes filtering it. C&A had an individual preference for how parents shared information with them. Most of these findings represented the school-aged and adolescents age groups, with one preschool finding supporting parents giving information. Category 4.1: My parents give me information (31 findings from 21 articles) .8,17-19,21,23,26-28,31-32,38-39,42-44,46,49-52 C&A trusted their parents to be honest with them and give them the information they need in a way that they can understand. They felt parents interpreted, explained, and added to the information they received from the HCT. Some C&A appreciated parents giving them information after they received it from the doctor, others did not prefer parents to receive it first. Category 4.2: Parents filtering information (8 findings from 5 articles). 15,18,26,32,52 C&A viewed their parents as someone who filters information from the HCT to them. This was an individual preference, as some viewed it as a way to buffer information or protect them, and others felt this filtering of information might result in information being hidden from them. Synthesized finding 5.0: How I get information ( 34 findings). C&A obtained information themselves or had their parents facilitate information exchange for them. C&A of all age ranges, including preschool, school-aged, and adolescent age groups reported this finding during the diagnosis period, while on therapy, or when sharing bad news. Category 5.1: I get information myself (26 findings from 20 articles). 7-8,17-19,23-24,26-27,29,33,37-38,43,45-46,49-50,53-54 C&A had preferences on taking initiative to get information on their own through various mechanisms, including asking questions to parents and clinicians, talking with other children, or searching the internet. Some C&A also gained information through actively listening to conversations occurring between others. Category 5.2: My parents help me to get information (8 findings from 7 articles). 8,23-24,27,32-33,52 C&A used their parents to facilitate information to and from the HCT by having their parents seek information on their behalf or having their parents remind them of topics they wanted to discuss. C&A reported their parents as a source of support in communicating with clinicians. Synthesized finding 6.0: When I do not want information ( 24 findings). C&A do not want information at times, especially when the information is given to them in a way they cannot understand. School-aged and adolescent age groups described this finding in the contexts of their diagnosis period or while on therapy. Category 6.1: I do not want information (13 findings from 11 articles). 7,17,19,23,26,28,32,42,46-47,55 C&A preferred not to receive information in certain instances, such as when they were not feeling well or did not feel they needed to know at that moment. They mentioned that they sometimes use nonverbal cues (e.g., not making eye contact) to communicate when they do not want information. Some C&A reported there are certain topics (e.g., death) they may not want to know about or may only want the basics about. Category 6.2: I do not understand information (11 findings from 7 articles). 17,25-26,39,43,45,56 C&A found medical jargan or big words confusing, with the pacing of information as something important to consider. C&A wanted information presented to them in a way that was useful and meaningful to them. Discussion This qualitative meta-synthesis summarizes C&A self-reported communication preferences related to information exchange and provides evidence-based practice recommendations on how they receive and get information, when they want or do not want information, and how their HCT and parents share information with them (Table 4). We identified C&A have individual preferences for what, who, when, and how they exchange information about their cancer treatment. Most importantly, we highlight that C&A can and do voice these preferences and their needs if they are asked to share them. The highest level of evidence supports how C&A want to receive information, specifically the importance of receiving information in a positive manner (e.g., being calm, providing hope) as it provides them with encouragement and support throughout their cancer treatment. There was also moderate level evidence that they wanted information to be shared with them honestly and in a way which they could understand (e.g., avoiding medical jargon). Furthermore, receiving the information sooner rather than later helped them to prepare for their cancer treatment experience. Lin and colleagues’ review described patients feeling invisible and powerless when they lacked information. 9 We found C&A wanting information was described more often than when they do not want information, with a moderate level of evidence that their preference and desire for information may change with time throughout their cancer treatment. This was also true if the information shared was considered “bad” (e.g., relapse, side effects). Their desire for wanting information about their prognosis whether good or bad was quantified by Ellis and Leventhal. They found 76% of C&A, 8-17 years of age, wanted to know their chance of being cured and 95% wanted to know if their cancer was terminal. 6 Our evidence supports preferences to when C&A may not want information though, for example when they are feeling ill or just not ready to hear about a certain topic in that moment. Bell and colleagues have developed a conceptual model around adolescent and young adults’ readiness to talk about end of life and validated the Ready-to-Talk measure specific to end of life discussions. 57-58 Lin and colleagues described therapeutic relationship and trust that can be built between C&A and providers when open and honest information exchange occurs. 9 Unique to our meta-synthesis we highlight a moderate level of evidence for the importance of this same open and honest therapeutic relationship between the C&A and their parent, with the parents having a role in C&A receiving, getting, and sharing cancer treatment information. Parents were a source of support, with a sense of openness and trust between them. C&A relied on their parents to interpret and explain things in a way that they might understand, and at times filter information that might overwhelm them. Parents also facilitated information exchange between the C&A and HCT. Therapeutic parent-child communication through childhood cancer treatment contributes to better health of not only the C&A, but family unit as well. 59 We identified moderate level evidence that even C&A of preschool age want information and will get information themselves by asking their parents or HCT. Distinct preferences across age groups were not evident in our review. The preferences seemed to be specific to other individual level barriers outside of age. There was evidence to support C&A may not want information if they are not feeling well, so situational variables such as current emotional and physical state likely play a role. Developmental stage, cultural background, socioeconomic status, communication styles, and treatment experiences are among some of the variables that have been described as potentially influential in cancer communication and should be explored in pediatric information exchange further. 60-62 Through our review we have identified a great deal of qualitative studies have been done to better understand C&A preferences for information exchange related to their cancer treatment. Future research should move towards intervention and implementation studies targeting these evidence-based cancer communication preferences in C&A. Furthermore, the evidence yielded from this review provides a foundation for researchers to explore any differences in communication needs that may exist in other pediatric chronic illness settings. Strengths and Limitations The strengths of this meta-synthesis include using JBI qualitative systematic review methods and quality appraisal checklists to develop evidence-based practice recommendations for C&A preferences for information exchange related to their cancer treatment. To truly capture C&A preferences we only synthesized qualitative data to capture their voices. Although we attempted to reach out to authors when details such as age or context were unclear, our results are limited to the to the data we were able to obtain. Author reporting also limited our ability to provide details specific to culture, health care organization structures, gender, race, and ethnicity, all characteristics that may be relevant to C&A information exchange preferences. A more detailed discussion of our strengths and limitations can be found elsewhere. 11 Practice Recommendations Through this meta-synthesis we have identified the following practice recommendations for the HCT to consider when exchanging cancer treatment information with C&A less than 18 years of age based on moderate to high level evidence. Lin and colleagues propose several strategies and actions to meet these practice recommendations. 9 Recommendation 1: Ask C&A if they have any information exchange preferences and recognize that these needs may change throughout their cancer treatment trajectory. Individual preferences can relate to what information they receive (e.g., diagnosis, prognosis), who they receive or get information from (e.g., parent versus directly from clinicians), when they receive information (e.g., at the same time as their parents or after their parents get it), and how they receive information (e.g., gradually over time or all at once). Recommendation 2: Be open and honest when communicating with C&A about their cancer treatment and provide information to them in a simple and positive manner. The use of pictures, stories, or videos might be helpful and provide clarity. Recommendation 3: Be attentive to nonverbal cues when communicating to C&A about their cancer treatment. If they are not feeling well, not making eye contact, or have the curtain pulled they may not want information at that moment. Even if they are not actively in dialogue, they may be actively listening. Recommendation 4: Acknowledge parents provide support to the C&A and play a critical role in information exchange related to C&A cancer treatment. C&A may utilize their parents to clarify or add to the information they receive from the HCT. They may also use the parents to filter or facilitate information to or from the HCT. It is important that the HCT encourage parents to also be open and honest with their C&A. Conclusion In this meta-synthesis, we identified evidence from reports of the C&A themselves that support their cancer communication preferences related to information exchange. The JBI methodology allowed us to provide evidence-based practice recommendations to the HCT on what, who, when and how they prefer to receive or get cancer treatment information. The HCT should implement these practices into routine clinical care to better meet the communication needs of C&A with cancer and improve their health outcomes. CRediT author statement: Ginny Schulz, Katherine Patterson Kelly, and Kim Pyke-Grimm contributed to Conceptualization, Methodology, Software, Validation, Formal Analysis, Investigation, Resources, Data Curation, Writing, reviewing, and editing, and Visualization. Conflict of Interest Disclosures: The authors have no conflicts to disclose. Funding: Ginny Schulz was supported by funding provided through the National Cancer Institute of the National Institutes of Health under Award Number K12 CA167540. The content is solely the responsibility of the authors and does not necessarily represent the official view of the NIH Acknowledgments. We acknowledge Susan Keller MLS, MS-HIT, previous Research Librarian, Children’s National Hospital for her critical contribution to this work by completing all literature searches and updates. References 1. Hult A, Lundgren E, Frojd C, Lindam A, Jangland E. Patient complaints about communication in cancer care settings: Hidden between the lines. Patient Educ Couns 2023; 114:107838. 2. Levine DR, Liederbach E, Johnson L, Kaye EC, Spraker-Perlman H, Mandrell B, et al. Are we meeting the informational needs of cancer patients and families? Perception of physician communication in pediatric oncology. Cancer 2019; 125(9):1518-15265. 3. 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Child and Adolescent Treatment Communication Meta-Synthesis PRISMA Table Table 1. Critical Appraisal of Included Studies (N=44) Table 2. Summary of Information Exchange Article Characteristics and Findings (N=44) Table 3. Summary of Synthesized Findings and ConQual Scores for Child and Adolescent Cancer Communication Preferences Related to Information Exchange Table 4. Exemplar Illustrations of Synthesized Findings for Child and Adolescent Cancer Communication Preferences Related to Information Exchange Supplementary Material File (final_figure 1 prisma - info exchange metasynthesis.docx) Download 89.29 KB File (table 1 info exchange appraisal table final.docx) Download 49.59 KB File (table 2 info exchange study table final.docx) Download 65.81 KB File (table 3_ summary of info exchange findings_final.docx) Download 23.47 KB File (table 4_ illustrations_final.docx) Download 54.52 KB Information & Authors Information Version history V1 Version 1 29 August 2025 Copyright This work is licensed under a Non Exclusive No Reuse License. Keywords palliative care pediatric oncology support care Authors Affiliations Ginny Schulz 0000-0001-6522-5268 [email protected] Washington University in St Louis School of Medicine View all articles by this author Katherine Patterson Kelly Children's National Hospital View all articles by this author Kimberly Pyke-Grimm 0000-0001-6396-7460 Lucile Salter Packard Children's Hospital at Stanford View all articles by this author Metrics & Citations Metrics Article Usage 190 views 174 downloads .FvxKWukQNSOunydq8rnd { width: 100px; } Citations Download citation Ginny Schulz, Katherine Patterson Kelly, Kimberly Pyke-Grimm. Child and Adolescent Cancer Communication Preferences for Information Exchange: A Meta-Synthesis. Authorea . 29 August 2025. DOI: https://doi.org/10.22541/au.175647876.69938757/v1 If you have the appropriate software installed, you can download article citation data to the citation manager of your choice. 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