Healthcare professionals’ perspectives on disclosure of diagnosis and related issues in childhood cancer: A mixed methods systematic review

Abstract

Objectives

This review aimed to systematically synthesize the available research on the disclosure of diagnosis and related issues in childhood cancer from the perspectives of healthcare professionals, with the goal of informing the optimization of disclosure processes and meeting the communication needs of affected families.

Methods

In accordance with the Joanna Briggs Institute (JBI) methodology for mixed methods systematic reviews, the convergent segregated approach was used in this review. Articles were retrieved from 11 databases, including PubMed, Web of Science, CINAHL, CENTRAL, Embase, Ovid/Medline, PsycINFO, PsycArticles, Scopus, ERIC, and China National Knowledge Infrastructure (CNKI). The quality of the selected articles was assessed using the Mixed Method Appraisal Tool (MMAT). The review protocol was registered on PROSPERO (CRD42024542746).

Results

A total of 21 studies from 10 countries were included. Their methodological quality was generally medium to high, with MMAT scores ranging from 60 % to 100 %. The synthesis yielded three core themes: 1) the spectrum of professional and societal attitudes toward disclosure; 2) the dynamic practices of navigating disclosure amid uncertainty, including timing and environment, stakeholders, and content of disclosure; and 3) factors influencing disclosure, including children’s, parental, healthcare professionals’, and socio-cultural factors.

Conclusions

This review synthesized the perspectives and experiences of healthcare professionals regarding disclosure in childhood cancer, highlighting the complexity and multidimensional nature of this process in clinical practice. Future research should further investigate the experiences and needs of children and their parents, explore cultural variations in disclosure practices, develop context-appropriate assessment tools, and construct multidimensional intervention strategies to enhance the humanistic care and professional effectiveness of the disclosure process.

What is known?

• •Childhood cancer has high survival rates (about 80 % in 5 years), increasing family confidence and creating demand for long-term effect information. Appropriate disclosure of childhood cancer information is a major worldwide priority.
• •Healthcare professionals’ attitudes, beliefs, and skills critically influence what, when, and how information is shared, impacting family communication and coping.
• •Effective disclosure helps children understand their illness, increases their sense of control/respect, promotes adjustment, and helps parents focus on the child.

What is new?

• •This study systematically synthesizes evidence specifically from the perspective of healthcare professionals on disclosure.
• •This study addresses disclosure of not just the cancer diagnosis, but also related issues (treatment, nursing care, end-of-life care) in pediatric oncology.

1. Introduction

The appropriate and effective disclosure of information about childhood cancer is a major concern worldwide [1,2]. With the development of diagnostic and treatment techniques, the mortality of childhood cancer has decreased significantly, and the survival rate has improved [3]. The five-year survival rate for childhood cancer is approximately 80 %, meaning that many children with cancer are long-term survivors [3]. Increasing survival rates have increased the confidence of families in managing the disease [4]. Meeting the information needs of families regarding the long-term effects of the disease and treatment is becoming increasingly important [[5], [6], [7]]. In addition, the rapid spread of the Internet and social media has provided alternative sources of information, which has gradually weakened the control of information by pediatric clinicians and nurses during the treatment process [8]. Consequently, children and their parents who are exposed to inaccurate information and advice may make inappropriate therapeutic decisions, which may affect the child’s health and even undermine family stability [9].

In this study, disclosure was considered to be humanistic communication between pediatric healthcare professionals and the family unit (typically the child and parents) throughout the dynamically changing process [10]. Specifically, the “related issues” included personalized follow-up health information for the child, such as examinations, treatment, rehabilitation, prognosis, and end-of-life care [10]. Many studies have emphasized the importance of disclosing a cancer diagnosis and its related issues [11,12]. Effective disclosure may help children understand their illness, increase their sense of control, make them feel respected, and promote their social adjustment [12,13]. This disclosure may also encourage parents to focus more closely on their children’s physical and mental health [9]. The decision to withhold information from patients may present a dilemma for healthcare professionals. A sense of moral ambiguity and potential stress, particularly when a child is eager to know the truth, may negatively impact healthcare professionals [14].

Although improving disclosure has been recognized as a key priority, its implementation has proven to be challenging [6,15]. Children’s cognition and preferences differ from those of adults; the pediatric disclosure model is expected to be individualized and multifaceted and may help children maintain hope [16]. Few published studies have documented the perspective of healthcare professionals on disclosure to children or their parents. Although the perspectives of children and parents are crucial to understanding the experience of disclosure and its impact [[17], [18], [19]], the perspectives of healthcare professionals are also fundamental because these professionals are the primary facilitators and gatekeepers of this communication [5,20]. Research indicates that the attitudes, beliefs, and skills of healthcare professionals significantly influence the substance, timing, and manner in which information is shared with children and families [7,21]. The approach of these professionals directly affects the quality of parent‒child communication regarding the cancer, as well as the family’s subsequent ability to make treatment decisions and cope with the diagnosis [18,21,22]. Currently, the content of disclosure, factors influencing disclosure, and advice on disclosure are unclear [23,24].

Therefore, this review aimed to systematically synthesize evidence on the disclosure of a cancer diagnosis and related issues, including treatment, nursing care, and end-of-life care in pediatric oncology from the perspective of healthcare professionals, to clarify the direction of further research and provide evidence for future interventions.

2. Methods

2.1. Study design

This mixed methods systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement [25]. This study was also conducted in accordance with the methodological guidance for conducting mixed-methods systematic reviews, published by the Joanna Briggs Institute (JBI) in Australia in 2020 [26]. Before this review, a protocol was developed and registered with PROSPERO (CRD42024542746). All seven researchers, who have extensive clinical experience in the pediatric or oncology field, have received training in systematic reviews and have published several articles in this area.

2.2. Search strategy

First, a preliminary search was conducted to clarify key search terms and medical subject headings (MeSHs). Second, based on the results of the initial search, the peer-reviewed literature in 11 databases was searched, including PubMed, Web of Science, CINAHL, CENTRAL, Embase, Ovid/Medline, PsycINFO, PsycArticles, Scopus, ERIC, and China National Knowledge Infrastructure (CNKI), from 2000 to July 14, 2025. Finally, the reference lists and citations of the identified literature were reviewed. A literature search was conducted based on the following framework. 1) Population: child∗, adolescen∗, teen∗, youth, pediatric∗, pubescen∗; 2) Intervention: notification, disclos∗, communicat∗, tell∗, discuss∗, talk, bad news, shared decision, share thoughts, information-sharing behavior; 3) Condition: cancer∗, neoplasm∗, tumor∗, leuk emia∗, sarcoma∗, carcinoma∗, oncolog∗, leucocyth∗, medulloblastom∗, meningiom∗, osteosarcom∗; 4) Context: oncologist∗, nurse∗, doctor∗, healthcare professional∗. The specific search strategy for each database is shown in Appendix A.

2.3. Inclusion and exclusion criteria

The inclusion criteria were as follows: a) studies of children who met the international guidelines for the diagnosis of childhood cancer [27]; b) studies that focused on the disclosure of a cancer diagnosis and/or its related issues, such as examination, treatment, rehabilitation, prognosis along the treatment trajectory and terminal care; c) studies that focused on disclosure to parents or children by healthcare professionals; and d) original research using quantitative methods (e.g., cross-sectional studies, longitudinal studies, case series studies, intervention studies), qualitative methods (e.g., descriptive research, phenomenological research, grounded theory), or mixed methods. The exclusion criteria were as follows: a) non-peer-reviewed literature; b) duplicate publications, including those with the most detailed data; and c) papers not published in English or Chinese.

2.4. Study selection

All the studies identified during the database search were imported into EndNote, and duplicates were automatically removed. Two reviewers, R. Xie and X. Huang, independently screened the titles and abstracts to identify potentially relevant studies. The team then obtained and carefully reviewed the full texts of these shortlisted articles to determine their eligibility for quality appraisal. Additionally, we manually searched the reference lists of the selected articles to find any other relevant papers. The first author led the screening process, which was then reviewed by the second author. Any discrepancies were resolved through team discussion until a consensus was reached.

2.5. Data extraction

The first and second authors independently screened and identified the primary research studies based on the inclusion criteria. Standardized data extraction forms were then used to record the key information from each eligible article. Quantitative data were extracted from quantitative studies and the quantitative components of mixed methods studies. Qualitative data were extracted from qualitative studies and the qualitative components of mixed methods studies. The following data were collected from the included articles: primary author, year of publication, country of study, methodology, data collection, data analysis, participants (sample size and study population), aims, and results. Any disagreements between reviewers were resolved by discussion within the research team.

2.6. Quality appraisal

Quality was assessed using the JBI Mixed Methods Appraisal Tool (MMAT), version 2018 [26]. The MMAT includes two screening questions (S1 and S2) and assessment criteria for five different study types: 1) qualitative; 2) quantitative randomized controlled trials; 3) quantitative nonrandomized trials; 4) quantitative descriptive studies; and 5) mixed methods studies. Each item is rated on a scale of “yes,” “no,” or “cannot tell,” and the number of criteria met determines the overall quality score, which is then divided by 5 (scores range from 20 % to 100 %, with 100 % indicating that all criteria have been met). Two researchers independently performed the quality appraisal. The research team discussed conflicts in quality appraisal until a consensus was reached.

2.7. Data synthesis and integration

Based on the methodological guidance of JBI, the convergent segregated approach was used [26]. This process involved separate quantitative and qualitative synthesis, followed by the integration of the resulting quantitative and qualitative evidence. Due to the considerable heterogeneity in study designs, outcomes measured, and instruments used, a narrative review was used to summarize the results of the quantitative studies. For qualitative studies, we followed the JBI meta-aggregation approach [28]. The full texts of the qualitative studies were imported into NVivo 12 software. The findings were coded line by line, and the codes were then grouped into distinct descriptive themes based on their similarity in meaning. These themes were then integrated and interpreted into analytical themes. Finally, the results of each single-method synthesis included in this review were configured according to the JBI methodology for mixed methods systematic reviews [26]. The quantitative and qualitative evidence were juxtaposed and linked to form a coherent line of argument, resulting in a structured overall analysis. These categories were combined to produce a comprehensive set of findings that can inform evidence-based practice. The data synthesis and integration were conducted independently by two researchers, and the results were finalized following discussion with the research team.

3. Results

The database search identified a total of 6,014 records. After removing duplicates, 3,181 records were screened based on title and abstract, and 32 records were excluded as irrelevant. The full texts of the remaining 32 articles were retrieved and screened for eligibility. Finally, 21 studies that met all the inclusion criteria were included in this review. The literature screening process is shown in Fig. 1.

Fig. 1.

Flowchart of included studies in systematic review.

3.1. Characteristics of included studies

As shown in the figure, a total of 21 articles (15 qualitative [2,11,20,22,[29], [30], [31], [32], [33], [34], [35], [36], [37], [38], [39]], four quantitative [[40], [41], [42], [43]], and two mixed-methods [44,45]) written in English were ultimately included. The total sample size of the studies was 1,764, comprising 1,329 from quantitative studies [[40], [41], [42], [43]], 281 from qualitative studies [2,11,20,22,[29], [30], [31], [32], [33], [34], [35], [36], [37], [38], [39]], and 154 from mixed methods studies [44,45]. A total of 10 countries were represented in the studies reviewed, with the largest number of studies conducted in the United States of America (USA; n = 10) [[32], [33], [34], [35], [36],[39], [40], [41],44,45], followed by Japan (n = 2) [42,43], Sweden (n = 2) [22,29], France (n = 1) [38], Jordan (n = 1) [37], Switzerland (n = 1) [11], India (n = 1) [20], Brazil (n = 1) [31], Turkey (n = 1) [30], and Israel (n = 1) [2]. Twelve studies included only pediatric oncologists [11,22,29,[34], [35], [36],[38], [39], [40],42,44,45], and the remaining study populations were nurses (n = 5) [[30], [31], [32], [33],41] and allied healthcare professionals, such as psychologists, social workers, survivor counsellors and child life specialists (n = 4) [2,20,37,43]. Additionally, three studies employed prospective longitudinal research methods [35,43,44]. The main characteristics of the included studies are summarized in Appendix B.

3.2. Quality appraisal

Table 1 shows the study quality appraisal based on the MMAT version 2018 [46]. Overall, all the studies were of adequate quality and met most of the criteria. Six of the 15 qualitative studies were of high quality [11,20,29,[31], [32], [33]], and the remaining studies were of moderate quality [2,22,30,[34], [35], [36], [37], [38], [39], [40], [41], [42], [43], [44], [45]].

Table 1.

Quality assessment using Mixed Methods Appraisal Tool (MMAT), version 2018.

Author, year, country	Study designs	S1	S2	1	2	3	4	5	Score (%)
Parsons et al. [40], 2007, USA	Quantitative	Y	Y	C	Y	C	Y	Y	60
Stenmarker et al. [29], 2010, Sweden	Qualitative	Y	Y	Y	Y	Y	Y	Y	100
Citak et al. [30], 2013, Turkey	Qualitative	Y	Y	C	Y	Y	Y	Y	80
Franca et al. [31], 2013, Brazil	Qualitative	Y	Y	Y	Y	Y	Y	Y	100
Hendricks et al. [32], 2015, USA	Qualitative	Y	Y	Y	Y	Y	Y	Y	100
Essig et al. [11], 2016, Switzerland	Qualitative	Y	Y	Y	Y	Y	Y	Y	100
Montgomery et al. [33], 2017, USA	Qualitative	Y	Y	Y	Y	Y	Y	Y	100
Newman et al. [41], 2018, USA	Quantitative	Y	Y	C	C	Y	Y	Y	60
Yoshida et al. [42], 2018, Japan	Quantitative	Y	Y	C	Y	C	Y	Y	60
Udo et al. [22], 2019, Sweden	Qualitative	Y	Y	C	Y	Y	Y	Y	80
Sisk et al. [34], 2021, USA	Qualitative	Y	Y	C	Y	Y	Y	Y	80
Chaudhuri et al. [20], 2022, India	Qualitative	Y	Y	Y	Y	Y	Y	Y	100
Laronne et al. [2], 2022, Israel	Qualitative	Y	Y	C	Y	Y	Y	Y	80
Hori et al. [43], 2022, Japan	Quantitative	Y	Y	Y	Y	C	Y	Y	80
Wharton et al. [36], 2022, USA	Qualitative	Y	Y	C	Y	Y	Y	Y	80
Porter et al. [35], 2022, USA	Qualitative	Y	Y	C	Y	Y	Y	Y	80
Poter et al. [44], 2023, USA	Mixed methods	Y	Y	Y	C	Y	C	Y	60
Six et al. [45], 2023, USA	Mixed methods	Y	Y	Y	Y	Y	C	Y	80
Terrasson et al. [38], 2023, France	Qualitative	Y	Y	C	Y	Y	Y	Y	80
Alarjeh et al. [37], 2023, Jordan	Qualitative	Y	Y	C	Y	Y	Y	Y	80
Zalud et al. [39], 2024, USA	Qualitative	Y	Y	Y	Y	Y	Y	C	80

Note: C = cannot tell. N = no. Y = yes. S1: A screening question that applies to all types of studies: are there clear research questions? S2: A screening question that applies to all types of studies: do the collected data allow to address the research questions? 1–5: There are different connotations according to different research types, as detailed in MMAT, version 2018 [26].

3.3. Synthesis of results (Appendix C)

3.3.1. Theme 1: the spectrum of professional and societal attitudes toward disclosure

All included studies reported or implied supportive attitudes of healthcare professionals toward disclosure [2,11,20,22,[29], [30], [31], [32], [33], [34], [35], [36], [37], [38], [39], [40], [41], [42], [43], [44], [45]]. Among the four quantitative studies included, one reported separately on the acceptability of prognosis-related communication by nurses [41], and three reported on acceptability by pediatricians [40,42,43]. For example, Yoshida explored the attitudes of Japanese physicians toward end-of-life discussion [42], and Parsons explored the attitudes of physicians toward the disclosure of a cancer diagnosis [40]. A study revealed an opinion gap in diagnosis disclosure over the last 20 years between healthcare professionals and other population groups (e.g., healthy school children and their parents) [43]. We found that the acceptability of disclosure, which refers to an attitude of agreeing or disagreeing with the disclosure of cancer, was greater among healthcare professionals than among other populations. Horiet al.’s study revealed that the rate of acceptance of diagnosis disclosure among pediatric oncologists increased from 9.3 % to 60.0 % in Japan over 20 years, whereas that of parents of healthy schoolchildren remained at 5.3 % in 2018 [43]. Yoshida et al.’s study, which focused on the end-of-life period, revealed that almost half of healthcare professionals were willing to disclose the difficult news of death to patients [42]. Additionally, healthcare professionals were more likely to disclose difficult news to older groups (patients aged 16–18 years) [42]. Parsons et al.’s study revealed that healthcare professionals in Japan were less willing to disclose information about cancer diagnosis and related issues than their counterparts in the USA, because they believed that it would bring stigma and social isolation to their families [40]. The integrated findings revealed that disclosure acceptability is not a binary choice, but rather a spectrum, where healthcare professionals’ attitudes have evolved significantly, often creating a gap with the more reserved attitudes of families and broader society, further nuanced by cultural context.

3.3.2. Theme 2: the dynamic practices of navigating disclosure amid uncertainty

3.3.2.1. Timing and environment: from crisis points to private dialogue

None of the included studies explicitly mentioned the place of disclosure. Some studies emphasized the importance of privacy and suggested creating a peaceful environment [2,44]. Regarding the timing of disclosure, the included studies primarily focused on critical junctures: initial diagnosis [36,40,45], advanced or end-of-life stages [2,22,32,33,37,39,42], and drug resistance [38]. Additionally, one study recommended communication before a crisis arises [33].

3.3.2.2. Disclosure stakeholders: the roles and collaboration

Disclosure of a cancer diagnosis and related issues in childhood cancer involved three stakeholders: patients (children), caregivers (parents), and healthcare professionals (oncologists and nurses). Each of these stakeholders played a different role [47]. Oncologists reassured parents via ongoing clinical care and explained the potentially curative nature of the treatment, whereas nurses relied on psychosocial skills and provided psychosocial support, explicitly addressing negative emotions [11]. This difference implied the importance and necessity of collaboration between healthcare professionals. Novice healthcare professionals needed extensive training, support, and mentoring from experienced professionals [32]. A total of 17 studies mentioned the disclosure experiences of healthcare professionals with children [2,11,20,22,[29], [30], [31], [32], [33], [34],36,40,42,43,48]. Still, only two of them specifically incorporated the child’s own perspective [31,42], revealing a significant gap in understanding the patient’s experience within the disclosure process. The primary factor determining children's involvement in the disclosure was parental preference [45]. The remaining studies were unclear about who should be involved in disclosure, focusing mainly on the family unit as the subject of cancer disclosure [35,38,39,41].

3.3.2.3. Content of disclosure: from diagnosis to palliative care

Only 16 studies (72.7 %) reported on the explicit content of the disclosure of the cancer diagnosis and related issues [2,20,22,29,32,33,[35], [36], [37],[40], [41], [42], [43], [44],48]. Disclosure content varied by disease stage and the needs of different stakeholders. At diagnosis, content ranged from the basic diagnosis to treatment details [36,40,43,45]. Few pediatricians guaranteed that patients would be 100 % cured, and parents in the late stages of cancer treatment would not have been surprised if the topic of death was mentioned at the time of diagnosis [22]. Circuitous language may hinder the acceptance of a diagnosis by parents; honesty at this stage was seen as foundational for future discussions about prognosis or relapse [36]. Four studies examined prognostic disclosure, which included information on cure likelihood, life expectancy, and quality of life [2,35,41,44]. Despite the recognition that improving prognostic disclosure is a critical research priority [48], clinicians consistently defer disclosure during periods of patient stability [44]. Eight studies explored end-of-life and palliative care, including prognostic disclosure, hospice care, and withdrawal of cancer treatment [2,22,29,32,33,37,39,42]. Oncologists sometimes provided “equivocal” information, which fell into four patterns: upfront reassurance, softening the message, describing possible disease progression without interpretation, and expressing uncertainty without concern about disease progression [35].

3.3.3. Theme 3: factors influencing disclosure

3.3.3.1. Children’s factors

Children’s age [11,20,22,43], cognition [30,34,40,45], mood [30], and hope for recovery [40] may be related to disclosure. Children and adolescents differed in their needs and attitudes toward being informed about their cancer condition, with older children hoping for open communication about their condition [11]. Parsons reported that this need was influenced by a child’s level of cognition [40]. Children suffering from very severe pain and side effects were fearful, withdrawn, and numb; therefore, healthcare professionals could only approach parents to disclose their condition [43]; this was particularly difficult at specific times, such as first diagnosis, relapse, end-of-life stage, or on days of special significance (e.g., birthdays, holidays) [30]. A previous study also revealed that the higher the cancer cure rate, the easier it was for healthcare professionals to disclose a diagnosis. Consequently, the patient’s family was more likely to accept the cancer diagnosis [40].

3.3.3.2. Parental factors

Parents’ awareness of the cancer [2,22,40], confidence in treatment [30], and family stability [11,34] may influence the disclosure of the child’s cancer diagnosis and related issues. The parents’ knowledge of the child’s cancer condition directly correlated with the ease with which healthcare professionals provided information [40]. The more hopeful the parents were, the more the child complied with treatment [34]. In addition, internal family conflicts may make it challenging for healthcare professionals to strike a balance between patients’ need for information and parents’ desire to “protect” their children during the disclosure process [11].

3.3.3.3. Healthcare professionals’ factors

Age [42], gender [42], clinical experience [2,22,32,34,41,42], sense of responsibility [40,42], emotions [2,41,42], relationships with family or colleagues [22,34,38,41,42], and communication skills [2,11,30] may influence disclosure. Female and younger healthcare professionals were more likely to disclose a childhood cancer diagnosis to the families of the children they cared for [42]. Moreover, clinical experience or the sense of professional responsibility directly correlated with the ease with which disclosure occurred [[40], [41], [42]]. A study that explored the experiences of nurses with prognosis-related communication revealed that nurses with more years of experience were more willing to provide proactive disclosure with less moral distress [30]. Healthcare professionals were concerned with the potential impact of disclosure on the doctor/nurse‒patient relationship and the psychological well-being of a child’s family, which in turn influenced the disclosure of the cancer condition [41,42]. In addition, studies have suggested that healthcare professionals working in pairs or groups may improve disclosure efficiency and complement each other’s deficiencies [22,38,42].

3.3.3.4. Socio-cultural factors

Differences in culture, such as religious beliefs, customs, and languages, as well as economic disparities between developed and developing regions, may affect the disclosure of cancer diagnoses and related issues [2,33,34,37,40]. Our findings did not reflect the impact of differences between specific countries. Religious beliefs may influence the attitudes of families toward child mortality and their acceptance of diagnostic and related issues [33]. For example, some family members believed that they should not interfere with God’s plan and refused to take action [33]. From the perspective of healthcare professionals, religious beliefs may influence their care of pediatric patients, including medication [34,37], especially when confronted with the end of life [33]. In addition, disclosure may be influenced by economic issues and other social instability [37].

4. Discussion

This systematic review synthesized findings from 21 studies across 10 countries. Quantitative research has primarily focused on attitudes toward disclosure in various populations [[40], [41], [42], [43]], whereas qualitative research has concentrated on the experiences and recommendations of clinicians as factors influencing disclosure [2,11,20,22,[29], [30], [31], [32], [33], [34], [35], [36], [37], [38], [39]]. This review revealed that the majority of included studies, particularly quantitative studies, focused on cross-sectional, retrospective data [35]. More longitudinal studies are needed to explore changes in disclosure as the childhood cancer progresses throughout the course of a child’s treatment and the strategies that can be used at different stages.

This study revealed that the attitudes of cancer disclosure in pediatric oncology varied across populations. Specifically, healthcare professionals are more likely than nonprofessionals to accept disclosure [42]. Additionally, healthcare professionals in Western countries tend to be more accepting and have a lower moral burden than those in East Asian countries [40,43]. Children may be more accepting of disclosure of a cancer diagnosis than their parents expected [37,40,43]. Compared with parents, healthcare professionals are more likely to agree that children should know their actual physical condition, including their poor prognosis, if treatment for a cure is no longer possible [43]. However, from the perspective of clinicians, psychological acceptance of disclosure may not necessarily represent complete implementation in clinical practice. Although healthcare professionals are willing to disclose the cancer diagnosis and related issues to the child, they are more likely to give the decision-making rights of disclosure to family members [49]. These findings suggest that healthcare professionals tend to respect the wishes of parents, and that most parents currently believe children should be protected from negative news. The potential benefits of disclosing a cancer diagnosis and related issues, such as alleviating the child’s suffering and building trust between healthcare professionals and the child’s family [31], have often been overlooked [42]. The voice of children has also been neglected [42]. In the future, a consensus strategy should be developed to bridge the gap between the attitudes of healthcare professionals and their actual practices, thereby streamlining the disclosure process.

The findings suggested that healthcare professionals, parents, and children were the stakeholders involved in the disclosure of the childhood cancer diagnosis and its related issues [47]. The family unit (parent and child) has been recommended as the target of disclosure in pediatric scenarios, with healthcare professionals playing a leading role [41]. When healthcare professionals assume a messenger-like role, they must possess effective communication skills, particularly in the areas of professional knowledge, emotional management, and humanistic care [29]. Although parents prefer the involvement of nurses and social workers in cancer disclosure, the disclosure of the cancer diagnosis and related issues is usually made by pediatric oncologists [45]. The main reason for this choice may be that oncologists have more specialized knowledge to address the diagnosis. However, in clinical practice, nurses tend to spend more time with pediatric patients and their parents than doctors. They are the first to notice the physical and mental changes in children, and they can help doctors decide the timing of disclosure to patients and observe their reactions [50]. Experienced nurses can anticipate terminal symptoms, provide explanations, and adapt the care plan to the patient’s needs [33]. Therefore, the voices of nurses must be considered more in the future. For example, further interventions are needed to enhance nurses’ disclosure skills and improve nurse-child/nurse-parent relationships in the future. Several studies recommended that healthcare professionals should receive training in communication skills to avoid potentially misleading information [2,11,22,39,45]. Considering the diverse perspectives and expectations of healthcare professionals from various backgrounds is also crucial when designing training courses [11].

The results showed that the content of disclosure needed to be balanced in several dimensions. First, a balance must be maintained between “bad news” (the reality of the cancer) and “good news” (parents’ expectations) [33]. When confronted with a known negative fact, it is essential to be truthful and accurate to avoid giving false hope. Inadequate disclosure may lead to an incomplete understanding of the cancer, which may affect treatment, but excessive disclosure may lead to undue psychological pressure [22]. To encourage patients to seek help and build trust, healthcare professionals can provide emotional support, including empathy, identification, and respect. Additionally, humanistic care, such as listening to the child, speaking up for the child, and creating a nurturing environment, should be prioritized during the disclosure process [31]. Second, it is essential to strike a balance between “lies” and “facts.” In other words, healthcare professionals should encourage parents to give their children a degree of autonomy and informed consent during the cancer treatment process [5]. Specifically, healthcare professionals can teach parents how to explain cancer-related issues to children, such as the purpose of nursing measures, precautions after using certain chemotherapy drugs, and why the child’s activities should be restricted. However, in contrast to adult patients, the extent to which the child has been informed about the cancer should be considered [11]. Healthcare professionals should recognize the uniqueness of each family and ensure that the child is involved in the disclosure process, allowing the child to receive age-appropriate information and to express any concerns or needs [22]. Third, maintaining a balance between rationality and emotion during disclosure is essential. Being overly rational may be seen as indifference, whereas extreme emotion may be considered unprofessional, both of which can affect disclosure. Healthcare professionals should focus on emotion management [29,30,32,33], which can help them reduce their risk of anxiety and depression [30]. This management includes maintaining professional distance to prevent overidentification from influencing the behavior of clinicians [29]. Moreover, healthcare professionals are recommended to share the burden of disclosure with their colleagues or others to protect their own mental health [29,30].

As shown in the findings, the decision of whether, when, and how to disclose is shaped by a convergence of factors related to the child, the parents, the healthcare team, and the broader sociocultural context. Multilevel factors act as barriers or facilitators to pediatric disclosure, and parental awareness of the cancer plays a crucial role in this process [40]. The more parents know about cancer, the easier it is for them to understand the information healthcare professionals disclose and to comply with treatment [30]. Childhood cancer is a chronic and long-term process, and its impact on a child’s life can be long-lasting [4]. The perceptions and information preferences of families change as cancer and treatment progress, and different types of information are disclosed [30]. For example, in a study from the US, a small percentage of parents expressed “heightened decisional regret” at diagnosis [51], whereas in other studies, a large majority of patients with cancer were satisfied with prognostic disclosure and expressed a desire for increased prognostic information over time [52]. However, one study showed that despite discussion, nearly 50 % of parents still did not understand key concepts before starting cancer treatment [53]. Therefore, the dynamic and ongoing evaluation of children’s knowledge and preferences, as well as those of their parents, is important. Several studies have suggested that healthcare professionals should select an appropriate mode of communication for disclosure [11,22,33,39]. The guidance of “a one-size-fits-all” framework may be beneficial for inexperienced healthcare professionals to disclose information in a stepwise manner [33]. Still, experienced professionals are expected to understand and disclose information in a comprehensive, ongoing, and personalized manner [39]. Notably, culture has a profound impact on disclosure, and interpersonal communication is often rooted in culture [40]. Specifically, cultural circumstances may directly influence how families and societies define and respond to a child’s illness. For example, in Eastern cultures, informing the family is often considered more important than informing the patient about the cancer condition [54]. In China, older family members usually make decisions on behalf of younger family members, making it somewhat more difficult for healthcare professionals to inform children with cancer about their own condition, as has also been reported in some previous studies [55]. Therefore, future studies with large sample sizes should be conducted to compare the differences in disclosure across cultures, and these cultural factors should be considered to identify the key points for future interventions. This systematic review also included several studies from both high- and middle-income countries. Although some studies identified barriers to and difficulties in disclosure, they all recognized the importance and feasibility of disclosure. One included study referred to disclosure among child refugees with advanced cancer in Jordan, which has rarely been reported [37]. Japanese researchers have explored changes in diagnosis disclosure over the past 20 years; however, the article did not explicitly investigate any correlation with economic development [43]. Further research can be conducted in the future to compare the differences in disclosure between countries with different income levels.

In general, this systematic review provides a basis for understanding and improving the disclosure of diagnosis and related issues in pediatric oncology. The results of this systematic review provide insights into the content of disclosure and offer suggestions to promote effective clinical disclosure. Healthcare professionals should consider the family unit as the primary target for disclosure and coordinate with the family to ensure their preferences are considered in the disclosure process, especially when it comes to children’s preferences [42]. Each child with cancer is a unique medical case, and healthcare professionals should consider various factors that influence disclosure [11]. The voice of nurses should also be considered more in the context of disclosure [11,[31], [32], [33]]. The implementation of strategies to improve disclosure will improve family cancer awareness and treatment adherence and strengthen the clinical relationships between healthcare professionals and families with childhood cancer [2,11,22,39,45].

5. Limitations

This study has some limitations. First, the high heterogeneity of the quantitative studies and the failure to identify high-risk factors that influenced diagnosis may have had some impact on the strength of the argument. Second, only studies written in English were included. Therefore, studies in other languages and from different cultures may have been overlooked. In the future, summarizing studies written in languages other than English would be beneficial. Finally, we considered only the perspectives of healthcare professionals. Future studies should explore the perspectives of parents and children.

6. Conclusions

This mixed-methods systematic review reported the perspectives of healthcare professionals on the disclosure of diagnosis and related issues in childhood cancer. The findings underscore the importance of disclosure and the various factors that influence it. The findings also provide a framework for training courses to improve the disclosure skills of healthcare professionals. Future research should investigate the disclosure experiences of children and parents, and analyze any differences in disclosure across cultures. Appropriate assessment tools and multidimensional intervention strategies should also be explored in further studies.

CRediT authorship contribution statement

Run Xie: Conceptualization, Methodology, Data curation, Validation, Formal analysis, Writing - original draft, Writing - review & editing. Xiaoyan Huang: Conceptualization, Methodology, Data curation, Supervision, Project administration, Funding acquisition, Formal analysis, Writing - original draft, Writing - review & editing. Yiran Du: Methodology, Data curation, Formal analysis, Writing - original draft, Writing - review & editing. Ying Gu: Methodology, Validation, Writing - review & editing. Qiongfang Kang: Methodology, Validation, Writing - review & editing. Hongsheng Wang: Methodology, Validation, Writing - review & editing. Daqian Zhu: Methodology, Validation, Writing - review & editing.

Data availability statement

The datasets generated during and/or analyzed during the current study are available from the corresponding author upon reasonable request.

Funding

This work was supported by the Fuxing Nursing Research Foundation of Fudan University [FNF202352]. The funding organization has had roles in the survey’s literature access, but played no role in: study design or methodology; data interpretation and conclusion drafting; manuscript preparation and publication decisions.

Declaration of competing interest

The authors declare there is no conflict of interest.

Appenidces. Supplementary data

The following are the Supplementary data to this article: