Abstract
Purpose:
This pilot study aimed at evaluating the feasibility and acceptability of a structured psycho-educational intervention designed to increase disease awareness in children with tumors. The primary objective was to promote psychological adjustment by supporting children’s understanding of their illness and facilitating open parent–child communication about cancer.
Methods:
Consecutive patients aged 6–11 years undergoing diagnosis or treatment for tumors at a single pediatric oncology center were invited to participate in a four-month period. The intervention consisted of three stages: (1) development of a mini guidebook for caregivers; (2) a psychologist-led meeting with parents focused on communication strategies; and (3) individual or group educational activities with children conducted by a multidisciplinary team. Child-centered, age-appropriate methods—including play, creative tasks, and anonymous “empty speech bubbles” for questions—were used to address disease etiology, diagnostic procedures, treatments, and terminology.
Results:
Eleven children participated in the intervention. All engaged actively in the sessions and expressed reassurance and satisfaction with the information received. The use of anonymous question tools facilitated open expression of fears and doubts. Parents reported increased confidence and reduced difficulty in communicating with their child about the illness, valuing the structured guidance provided.
Conclusion:
This preliminary experience suggests that structured, interactive interventions promoting illness awareness are feasible and well accepted in pediatric oncology. Such approaches may support psychological adjustment in children with tumors and improve parent-child communication, representing a valuable component of holistic cancer care.
Introduction
Both original research and studies on psychological and behavioral disorders in children with cancer indicate that several factors play a crucial role in their onset and persistence over time.1-6 Among these, the children's level of knowledge about their diagnosis and subsequent sense of mastery over it are key factors in psychological adjustment.7-14
The intervention was conceptually informed by literature emphasizing the role of illness representation, cognitive mastery, and developmentally appropriate truth-telling in pediatric oncology. Previous research suggests that open and age-appropriate communication may reduce uncertainty and support adaptive coping, while avoidance or partial disclosure may increase confusion and distress.7–14 Within this framework, providing structured opportunities for children to ask questions and construct meaning around their illness was considered a potentially protective factor for psychological adjustment.
We therefore proposed the implementation of an intervention for children aimed at increasing their awareness of the disease, facilitating their active and adaptive management of the treatment process and promoting better psychological adjustment. This intervention aimed to prevent dysfunctional dynamics, such as complete avoidance or inadequate parent-child communication, which often complicate the challenging process of psychological adjustment to the disease and its consequences.7,8,10-14 This project also sought to address parents' need for guidance and support in communicating with their child about the illness. We selected patients with solid tumors because they represented the largest proportion of the new annual diagnoses in our department.
Materials and methods
This study was designed as a pilot feasibility and acceptability research aimed at evaluating a structured psychoeducational intervention for children with cancer and their parents. Eligibility criteria included adequate cognitive level and clinical conditions and age between 6 and 11 years in those children with tumors with whom physicians, hospital schoolteachers and psychologists could have addressed the sensitive topic of cancer. “Adequate cognitive level” was determined through clinical judgment by the multidisciplinary experienced team (psychologists, physicians and hospital schoolteachers), based on the child’s ability to understand age-appropriate information, engage in verbal interaction and participate in structured activities. This evaluation did not rely on formal standardized cognitive assessments but on routine clinical observation and ongoing interaction with the child in the care setting. “Clinical conditions” indicated that the involved patients were in generally good health, without acute symptoms or significant physical distress and therefore considered well enough to participate in the activities. Eligibility was discussed and agreed upon within the multidisciplinary team.
We contacted all consecutive patients aged 6 to 11 years, undergoing diagnosis and treatment for tumors at the Pediatric Oncology Department of the Fondazione IRCCS Istituto Nazionale dei Tumori in Milan, Italy, from November 2023 to March 2024. The protocol had received independent Ethical Board approval (31/10/2023, n° 671-DG) and all parents had signed an informed consent.
Given its pilot nature, no standardized psychometric measures of anxiety, coping, or psychological adjustment were administered, and outcomes were based on participation rates and qualitative feedback from children and parents.
The professionals involved in the project were one pediatric oncologist, two clinical psychologists and one hospital schoolteacher.
Professionals involved and stages of the project are reported in Table 1.
Project stages.
Results
Initially, 22 patients meeting the criteria were contacted (by telephone, in the clinic, in the ward, by email). Parents of four patients declined participation: three of them felt it was premature and inappropriate to inform children about their medical history; for the last one they preferred to share information and explanations on their own. Of the 18 patients who finally accepted, only 11 really participated: three individually and eight in group. The reason for the individual participation of three patients was simply that their families were unable to attend on the date set for the group meeting. The remaining seven out of 18, despite initially agreeing to take part, were unable to attend the scheduled session, six due to unexpected family or school commitments and one due to illness see CONSORT scheme as
CONSORT flow diagram.
All patients enrolled had been diagnosed with pediatric cancer (seven with brain tumors, one with rhabdomyosarcoma, one with neuroblastoma, one with retinoblastoma, one with Wilms tumor). Six were female and five male, aged between 6 and 11 years (mean age = 9.13 years).
Characteristics of the patients are reported in Table 2.
Patients.
The project had three stages:
Mini book preparation containing a summary of the topics to be explored with the children and a practical guidance
Parents-psychologists meeting
Working group with children
Part 1: Mini-book preparation
The two clinical psychologists, the physician and the hospital schoolteacher prepared a mini book to guide caregivers with concrete examples and strategies on when and how to communicate, depending on the child's age and specific situation.
The mini-book was divided into two sections: a theoretical section explaining the role of truth in a child's psychological development; a second practical section detailing what information is essential and helpful to share with the child and how to avoid misunderstandings or excessive uncertainty that might amplify distress.
Part 2: Parent-psychologist meeting
The objective of the meeting was to help parents overcome their common resistance and difficulties in talking openly with their child about the disease. The psychologist supported caregivers with concrete examples and strategies on when and how to communicate, depending on the child's age and specific situation. Examples of guidance provided during the meeting included suggestions for age-appropriate language (e.g., describing a tumor as “a group of cells that are growing in a way they should not”), modeling responses to common child questions such as “Is it my fault?” or “Did I do something wrong?”, encouraging parents to validate the child’s emotions before providing explanations, and recommending gradual disclosure tailored to the child’s developmental level and expressed curiosity. Parents were also invited to reflect on their own emotional reactions and possible avoidance behaviors that might unintentionally limit open communication. The meeting followed a semi-structured format, combining psychoeducational content with open discussion of parents’ concerns and real-life communication scenarios. The meeting consisted of a single session lasting approximately 60 minutes.
Parents were informed about the psychological importance and long-term protective effects of truth, sharing and involvement.
At the end of the meeting, parents were also provided with the mini-book.
Part 3: Working group with children, conducted by physician, schoolteacher and psychologists
This part of the project involved the participation of the 11 children. The intervention with children consisted of a single session lasting approximately three hours, conducted either individually or in small groups depending on logistical constraints.
Various aspects of the disease were addressed in an appropriate way according to the children’s age. They included initial symptoms and their causes, the diagnostic process, the etiology of cancer (exploring the topics of cells, cell reproduction and tumor formation), oncological treatments process (surgery, chemotherapy and radiotherapy), as well as their cosmetic, clinical and functional consequences, rehabilitation and long-term effects.
Children were provided with large sheets of paper containing empty speech bubbles, in which they were invited to write any question, doubt, concerns, or curiosity regarding their tumor, treatments, or general health conditions. To encourage open expression, they were reassured that the activity was anonymous (Figure 2) and not graded or commented upon.
The “speech bubbles”: the questions of the children.
Table 3 summarizes the topics addressed during this part of the project, which were specifically designed to facilitate children’s understanding of their illness through age-appropriate and interactive activities. The sessions focused on four main areas: a) the etiology of cancer cells (e.g., the role of cells, mechanisms of growth and abnormal proliferation), b) the oncological treatments (including surgery, chemotherapy and radiotherapy), c) the diagnosis and follow-up (focusing on medical examinations, brain functions and symptom interpretation) and d) the terminology surrounding the word “tumor”.
Topics of Part 3.
For each theme, several activities were implemented to foster both knowledge acquisition and emotional processing (Figure 3). For instance, the concept of cell growth and abnormal proliferation was introduced through reading materials, drawings and creative construction with LEGO bricks. Treatment modalities were explained using child-friendly videos, cartoons and practical experiments, including the creation of radiotherapy-related objects like immobilization masks. Diagnostic procedures and neurological functions were clarified through playful activities and metaphors, such as games, drawings and experiments to simulate symptoms and consequences. The sensitive issue of naming the disease was addressed with category games, allowing the children to explore the multiplicity of terms and to openly discuss the label “tumor”. Together, these activities provided an accessible and engaging framework for children to process complex medical information while reducing anxiety and promoting active participation.
Activities.
Finally, the professionals read the bubbles filled with their questions aloud and together the children formulated a comprehensive answer to each question. A summary of all questions collected through the empty speech bubbles is presented in Table 4, where they are grouped into thematic categories to illustrate the main areas of children’s representations of their illness.
Summary of all questions collected through the empty speech bubbles.
A final sharing session with parents was organized: the children explained to them the topics covered and what they had learned.
To conclude, each child was awarded a “little doctor's diploma” (Figure 4).
Little doctor’s diploma.
During the reading and discussion of the empty speech bubbles, it emerged that each child had a personal and distinct representation of their illness. Some focused on bodily aspects (“Why couldn’t I walk properly?”, “What happened in my head?”), others on relational aspects (“Once someone made fun of me because I had a patch on my eye. How should I react in these cases?”) and others on more symbolic or imaginative dimensions (“What color is the tumor?”, “Do tumors weigh the same?”, “Are my cells beautiful?”).
This variety highlighted the subjective and unique perception each child had of their experience, allowing professionals to provide responses tailored to different ages and sensitivities.
The use of empty speech bubbles proved to be an effective tool for eliciting emotional and cognitive content that would have been difficult to express directly. Some children, after writing their sentences, showed relief or curiosity when hearing the questions read aloud, expressing surprise at recognizing similarities and differences with their peers’ thoughts (“I wrote this question too”, “I wanted to know that too”, “I had never thought about that”).
This fostered a climate of trust and openness, where children spontaneously began to comment on and complete others’ questions, turning the activity into a safe and participatory sharing space.
All participating children actively engaged in the sessions, reported satisfaction with the explanations provided and a sense of reassurance regarding their concerns. Their words provided a concrete reflection of this experience: L., a 6-year-old boy, said: “Now I know that the tumor is not my fault.” A 9-year-old girl, R., commented: “I like that I can ask everything, even things that are a little scary.” A., aged 11, added: “Understanding how my head works makes me feel calmer”.
Parents also expressed appreciation for the initiative, emphasizing the value of support in communicating with their children. A mother said: “It’s hard to know where to start talking about the illness. This meeting makes you feel more confident and less alone,” and a father added: “It’s important to have a space to understand how to tell the truth without scaring them and also to really listen to what they think about their illness.”
Discussion
The present pilot experience demonstrated that structured interventions aimed at increasing disease awareness in pediatric oncology patients could have multiple beneficial effects, for both children and their families.
No satisfaction questionnaires were created. At subsequent meetings between individual patients and psychologists and between families and psychologists, there was positive feedback in terms of satisfaction from both sides. The children reported that they had received some answers to questions they had been asking themselves since the onset of the illness. The parents, for their part, reported greater peace of mind in dealing with the issue of “illness” at home as well.
Providing age-appropriate information about cancer, its etiology, diagnostic process, treatments, and long-term implications may support children’s understanding of their condition and contribute to adaptive coping processes. Actively involving children through interactive tools such as empty speech bubbles, creative tasks and role-playing exercises allowed them to articulate questions, clarify misconceptions and gain a functional understanding of their condition. A distinctive feature of this intervention, compared with more traditional psychoeducational programs in pediatric oncology, is the use of anonymous “empty speech bubbles” combined with the co-construction of answers. This approach allowed children to express doubts, fears and misconceptions in a protected and non-judgmental way, reducing the potential impact of embarrassment or fear of asking the “wrong” questions. Furthermore, the collective discussion and joint formulation of answers fostered an active meaning-making process, in which children were not passive recipients of information but active participants in constructing knowledge about their illness. This participatory and child-centered methodology represents a potentially innovative element in the field of pediatric psychoeducation. To our knowledge, this specific combination of anonymity and co-constructed responses has not been widely described in pediatric oncology settings.
The thematic clustering of the children’s questions highlights that their illness representations are not limited to biomedical elements, but also involve existential, relational and identity-related dimensions. Children asked not only what the tumor was and how it was treated, but also why it happened, why to them, and how others perceived them. These findings are consistent with previous literature indicating that children actively construct meaning from the illness experience and benefit from opportunities to articulate these representations in a safe and supportive context.7–14 By providing structured spaces for expression and co-construction of knowledge, the intervention contributed to strengthening children’s sense of mastery, reducing uncertainty, and promoting adaptive coping.
These findings are consistent with the previous literature emphasizing the protective role of knowledge and mastery in mitigating anxiety and fostering adaptive coping strategies in pediatric oncology populations.7–14
A relevant outcome was the recognition by children of the uniqueness of their illness and the diversity of individual experiences. This is particularly relevant for younger patients, who often engage in social comparison with peers facing similar diagnoses—a factor known to contribute to distress and fear if not properly addressed. Providing personalized and transparent information likely reduced uncertainty and fostered a sense of control, associated with better treatment and cooperative behavior during medical procedures.
The use of anonymous “empty speech bubbles” proved particularly effective in encouraging the expression of fears and curiosities that children might otherwise withhold, confirming the importance of creating safe and non-judgmental communication spaces.
Parents’ feedback highlighted the dual benefit of the intervention: supporting the child’s understanding while enhancing parent-child communication, reducing avoidance behaviors and enhancing emotional sharing. These outcomes align with previous literature showing that open, developmentally appropriate communication about illness is associated with better psychosocial adjustment and lower psychological distress in pediatric cancer patients.10,11 Notably, some parents initially refused participation in this stage, highlighting that parental readiness is a critical factor in implementing such interventions. Future programs should include preparatory sessions targeting parental attitudes and perceived barriers to optimize child engagement.
Although preliminary, our results support the integration of structured awareness interventions as a core component of pediatric oncology care. Since illness awareness is a modifiable factor influencing psychological adjustment, targeted interventions like this could complement traditional psychological support and contribute to the prevention of maladaptive coping and long-term distress. Future research should aim to replicate these findings in larger cohorts, include longitudinal follow-up and assess potential impacts on objective measures such as treatment adherence, anxiety and quality of life.
In conclusion, our single-center pilot study highlights that empowering children with knowledge, supporting parents in communication and fostering interactive, age-appropriate educational strategies may constitute an effective approach to enhance coping and psychosocial well-being in pediatric oncology. These interventions represent a promising avenue for holistic care that addresses both medical and psychological needs.
Limitations and future perspectives
This study has several limitations. First, the project did not include standardized psychometric measures of anxiety, coping, or psychological adjustment. Therefore, conclusions regarding emotional outcomes are limited to qualitative observations and parent-reported perceptions rather than objective assessments. This emphasizes that the primary aim of the study was to assess feasibility and acceptability rather than to evaluate psychological effectiveness. Consequently, while qualitative feedback provides valuable insights, no conclusions can be drawn regarding the intervention’s impact on children’s emotional or coping outcomes. In addition, the small sample size, single-center design, and lack of long-term follow-up limit generalizability. Future directions include expanding the sample and conducting longitudinal studies to evaluate medium- and long-term impacts on coping, treatment adherence, and psychosocial well-being. Introducing a standardized questionnaire at the end of the program could help systematically record the experiences of both children and parents, facilitating integration of qualitative and quantitative data to better assess intervention effectiveness.
Moreover, the study focused primarily on children’s biomedical understanding and did not systematically assess existential, relational, or identity-related aspects of their illness representations. Future research could incorporate qualitative and quantitative tools to capture these dimensions more comprehensively.
Conclusions
While interactive tools such as empty speech bubbles were effective, future studies could explore additional expressive modalities—such as narratives, drawing, or digital storytelling—to reflect children’s diverse ways of making sense of their illness. Investigating how personalized approaches addressing both biomedical and psychosocial aspects influence coping and psychosocial outcomes also represents a promising avenue. Finally, comparing individual and group modalities could help optimize engagement and educational impact across developmental stages and unique illness experiences.
Footnotes
Declaration of conflicting interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The project received funds by the prize “New care 2022 – Idee innovative sulla Relazione Medico Paziente e di Cura, in ambito Ospedaliero e Territoriale”, sponsored by Fondazione Giancarlo Quarta Onlus.
