Introduction
The family is a dynamic social organization of people “in relationship” with each other, based on the interdependence of its members (Cooley Reference Cooley1909; Scabini and Iafrate Reference Scabini and Iafrate2019). Because of this particular configuration, the diagnosis of cancer in a parent doesn’t just affect the individual person, but the whole family organization.
Parents who discover having cancer may experience a loss of energy, physical fatigue, anxiety and worry; they also have to undergo repeated visits and tests, which inevitably disrupt the daily routine of the whole family (Semple and McCance Reference Semple and McCance2010). To these stressors should be added the worry and exhaustion of continuing to fulfill their fundamental role as parents (Zaider et al. Reference Zaider, Salley and Terry2015; Check et al. Reference Check, Park and Reeder‐Hayes2017; Morris et al. Reference Morris, Turnbull and Preen2018).
One of the most difficult aspects for parents is how and what to tell their children about cancer (Semple and McCance Reference Semple and McCance2010; Schiena et al. Reference Schiena, Hocking and Joubert2019). Some noteworthy systematic reviews (Semple and McCance Reference Semple and McCance2010; Xu et al. Reference Xu, Huang and Zhang2024) have collected studies (mainly qualitative) on the strategies used by parents with cancer to communicate the illness to their children. The results show that although parents favor open communication with their children, they find it difficult to put this into practice, mainly because they do not feel adequately prepared. This outcome aligns with the recent systematic review by Mckeown et al. (Reference Mckeown, Campbell and Dempster2025), which highlighted how children may experience isolation at home due to constrained family communication. The authors indicate that lack of parental responds to young people’s informational needs lead to rumination and a sense of loneliness among the latter. On the contrary, the study shows that effective communication with parents regarding the illness enhances young people’s sense of support and their ability to cope with parental cancer.
Although the topic of communicating cancer to children has received some attention in the last few decades, Xu et al. (Reference Xu, Huang and Zhang2024) in their recent systematic review affirm that parent–child communication has not been yet studied in depth and more research is needed on communication between parents with cancer and their children. Furthermore, there are additional important aspects that, in our perspective, have been little explored in the literature. First, to our knowledge, only one study conducted in Australia has examined the needs of parents who have to communicate a cancer diagnosis to their minor children (Schiena et al. Reference Schiena, Hocking and Joubert2019). This study highlighted parents’ need for professional support, understanding of children and ablility to meet their needs. However, one single study is insufficient to fully address the complexities of this matter, exploring parents’ needs in a specific cultural environment is essential for a patient-centered healthcare system in order to address their specific needs and, consequently, better support parents and their children as well.
Second, no known studies have specifically investigated parental beliefs regarding illness disclosure to their children, despite documented evidence in the literature of a bidirectional relationship between beliefs and communication (Buchanan et al. Reference Buchanan, Cosolo and Millership1996; Beadle et al. Reference Beadle, Yates and Najman2004). Understanding parental beliefs is fundamental for promoting effective communication and, consequently, fostering children’s emotional adaptation and well-being (Zhao et al. Reference Zhao, Xiao and Liu2024).
Finally, no known studies have been carried out in the Italian context. Given that the way individuals communicate is deeply rooted in the culture of reference, it is essential to examine both what is communicated and how it is expressed within a specific cultural context (Gordon Reference Gordon, Pfleiderer and Bibeau1991)
As part of the broader project “Pathways of support for children and adolescents in an onco-haematological context: Support, Research and Education,” funded by the Italian Ministry of Labour and Social Policy, this study aims to explore: (1) the beliefs and strategies parents with cancer use to communicate diagnosis, prognosis and treatment to their minor children and (2) the needs of these parents.
Methods
Research strategy
In line with the research aim, this study adopted a qualitative research methodology through a constructivist approach. This approach has been selected as the objective of this study is to achieve an in-depth understanding of how parents experience a specific phenomenon (to be parents with a cancer diagnosis and having minor children); this method is capable of capturing the complexity of subjects’ individual perceptions, feelings and experiences (Braun and Clarke Reference Braun and Clarke2021, Reference Braun and Clarke2024).
Participants
The research sample was determined using purposive sampling. Between January and September 2024, all patients with minor children (<18 y.o.) who sought psychological support at either the Clinical Psychology Unit or the Palliative Care, Pain Therapy, and Rehabilitation Unit of the National Cancer Institute of Milan (Fondazione IRCCS Istituto Nazionale dei Tumori) were approached in person and invited to participate in the study. The inclusion criteria were as follows: (1) having a cancer diagnosis or being a partner of a person diagnosed with cancer; (2) having at least a child under 18; (3) willing to participate; and (4) proficient in the Italian language. Approximately, half of the recruited patients were asked to consent to their participation, while the other half were asked to authorize contact with their partner (where applicable). The number of parents to be interviewed was not predetermined; recruitment continued until meaning saturation was achieved. Meaning saturation indicates the gathering of enough facets to sufficiently comprehend information regarding the topic of interest (Sim et al. Reference Sim, Saunders and Waterfield2018). Therefore, the analysis was conducted throughout the process of patients’ recruitment.
Instruments
Each participant took part in a semi-structured interview. Participants were encouraged to recount in detail their experiences, perspectives, and emotions related to the research objective. The interviews were conducted by BS (F, PsyD) and SA (F, PhD), both psychologists and experienced researchers in interviewing. Interviews were conducted face-to-face, by telephone or via the Teams platform.
An interview guide (Appendix 1 – Interview Outline), developed by the research team [SA, BS and CB] and based on the study’s objective, was used to structure the interviews, ensuring that all topics relevant to addressing the research aims were discussed. Additional topics that emerged during the interview, but were not included in the semi-structure interview guide, were taken in consideration as relevant to the aim of the study. The interviews were audio-recorded with participants’ consent and transcribed verbatim. The mean duration of interviews is 36 minutes.
Analysis
The transcripts were analyzed using Braun and Clarke’s reflexive thematic analysis (RTA) (Braun and Clarke Reference Braun and Clarke2019, Reference Braun and Clarke2021, Reference Braun and Clarke2024). RTA is the method chosen to construct meaning from themes informed by interviews. In line with the chosen approach, no themes were identified a priori, instead a bottom-up approach was used. Aiming to achieve richer interpretations of meaning (Braun and Clarke Reference Braun and Clarke2019, Reference Braun and Clarke2021), three researchers [SA, BS, ZN] read the transcripts several times simultaneously to gain an overview of the material and the meaning of the content, keeping the research objectives in mind. Quotations useful for answering the research objectives were selected and grouped into codes. A more detailed analysis was then carried out through the researcher’s active role in generating themes and sub-themes and to find links between them. This process was iterative (Braun and Clarke 20021). The transcripts were analyzed using “pen and paper.”
No separate analyses were conducted regarding the role of the parents (mother/father, patient/partner), both because the research objective did not require it and because the parental couple was considered as the unit of analysis (Scabini and Iafrate Reference Scabini and Iafrate2019).
Ethical issue
The study was conducted following the Helsinki guidelines for research involving human subjects and was approved by the INT Ethics Committee (INT 281–23). All participants signed a written informed consent form for their participation in the study, for their privacy and for the audio recording. The interviews were anonymized to ensure privacy.
Results
Participants
Eleven parents were asked to participate, but one declined due to a lack of time and interest in the research. Ten parents participated in the interviews, whose characteristics are shown in Table 1. Meaning saturation was reached at the seventh interview; however, three further interviews were conducted to ensure the identification of new facets relevant to better comprehend the phenomenon. Participants were not patients of the interviewers.
Table 1. Participant characteristics
Theme generation
Thematic analysis led to the creation of five themes, listed and defined in Table 2: (1) the challenges parents faced at this sensitive time; (2) the emotions parents experienced; (3) the beliefs that may have influenced how parents communicate the illness to their children; (4) the strategies parents used to communicate the illness to their children; and (5) parents’ perception of their children’s understanding of the illness. Subthemes were also identified for each theme. Sample quotations are presented in Tables 3–6.
Table 2. Identified themes, definitions, and sub-themes
Table 3. Examples of quotations of the theme “The challenges parents faced at this sensitive time”
Table 4. Examples of quotations of the theme “The emotions parents experienced”
Table 5. Examples of quotations of the theme “The beliefs that may have influenced how parents communicate the illness to their children”
Table 6. Examples of quotations of the theme “The strategies parents used to for communicating the illness to their children”
1) The challenges parents faced at this sensitive time
Parents report facing many challenges in their relationships with their children during the illness. Two issues in particular emerge: communicating cancer to their children and dealing with the challenges of everyday life while having cancer (for quotations examples please see Table 3).
Communicating cancer to their children. Everything related to this topic was generally very difficult. Particularly critical moments included the diagnosis, worsening health, hospitalization (ref 1) and appearance of metastases (ref 2) (for the latter see also the topic “Strategies for communicating the illness to children”). However, uncertainty about what children have understood could also be stressful (see the topic “Perception of children’s understanding”), because parents did not know “how to act.” It was particularly challenging to address children’s concerns about their parents’ health (ref 3), which is why parents often chose to postpone the communication of their diagnosis.
Dealing with the challenges of everyday life while having cancer. Everyday life presents personal, relationship and parenting challenges for everyone. For those with cancer, these can become real obstacles due to the physical and emotional burden of treatments and frequent check-ups, as well as the fear of recurrence (ref 4). The interviewed parents mentioned some of the many challenges they faced, such as caring for or mourning the loss of elderly parents (refs 5–6), dealing with arguments, separations or divorces with their partner (refs 7–8), and managing work issues (ref 9). All of these challenges were associated with the complexity of never being able and never wanting to stop “being” a parent (ref 10), i.e. remaining focused on the needs of their children in both a psychological (ensuring they live a “normal” life, not burdening them with the disease and finding the energy for carefree activities) and physical (holding them, taking them to school and recreational activities) (refs 11–14). For all these reasons, many of the quotations collected point to a fear of “giving in” (ref 15) (see also the “Emotions” theme).
2) The emotions parents experienced
This theme only covers emotions related to the parent-child relationship, not those related to the illness itself, however present and impacting QoL of families as a whole. Parents experienced a wide range of emotions concerning their children, and in most cases, these emotions were intertwined. Here, however, emotions will be distinguished solely for reporting purposes. For quotations examples please see Table 4.
Figure 1. A graphic summary showing the conceptual connections between the themes “The Challenges parents faced at this sensitive time” and “The Emotions parents experienced”.
Concern. There were numerous concerns, many of which were related to appearing “sick” or “weak” in the eyes of children (ref 16), especially when it was not possible to allow them to live a “normal” life, i.e. the everyday life they had before the illness. For the interviewed parents, being a “good parent” appeared to require emotional and physical “strength.” Showing themselves in tears or bald seemed to transmit a “negative message” to one’s children.
Communicating the illness to children in an appropriate manner was also a concern, particularly during hospitalization or when the condition worsened (refs 17–18). The underlying premise is that inadequate communication management may negatively impact childen’s well-being (See topic: “The beliefs that may have influenced how parents communicate the illness to their children”).
The worry about not seeing their children grow up was sometimes verbalized, however, it was more often kept silent (ref 19). Researchers perceived that certain parents were afraid to even discuss this option. Hence, to respect this belief, this matter was not further investigated.
Another concern was related to passing on the disease to their children and not being able to provide them with the best diagnostic and therapeutic tools to prevent or support this eventuality (ref 20). This concern arises from the perception that the National Health Service frequently fails to address patients’ needs promptly and effectively.
Finally, a further concern, presented only among the mothers in this study, was related to not being able to adequately “equip” their children for life in case they die. This worry may also reflect emotions of guilt due to the perception of “not having done enough” for one’s own children (also see sub-theme “Guilt”).
Guilt. Often linked to concern, guilt emerged. It was associated with the worry of “overburdening” children with a burden that a parent would like to spare them (ref 21), as well as with not allowing children to live a carefree life (ref 22). Some mothers, who knew their illness was worsening, also felt guilty for not teaching their children to be more independent and, therefore, to “fend for themselves” when they will pass away (ref 23).
Loneliness. Many of the comments expressed a sense of loneliness, particularly among single parents (ref 24) and those without help from grandparents. These individuals had to manage the illness while raising children and coping with the daily grind (see also the theme “challenges”).
Fear of a physical and/or emotional breakdown. The numerous daily challenges and struggles, both psychological (the whirlwind of emotions) and physical (frequent exams and check-ups, the side effects of treatment, etc.) led parents to fear that they would not be able to cope (ref 25). Added to this was the thought that they couldn’t afford to give up both because their young children needed them, and because they felt children should have been shielded from witnessing their parents in pain (see also the theme “Beliefs”). Knowing that their children rely on them for survival reasons function both as a source of strength and as an amplifier of the emotional burden and duty carried by parents. Figure 1 shows a summary of the “The Challenges parents faced at this sensitive time” and “The Emotions parents experienced” themes, along with the conceptual connections between them.
3) The beliefs that may have influenced how parents communicate the illness to their children
This theme presents parents’ beliefs about how to communicate to their children about cancer. Beliefs can be defined as convictions about the world and how it works. For quotations examples please see Table 5.
What and how to talk about the disease. The first sub-theme concerns the amount of information and terminology to use when talking about the illness. At opposite ends of a continuum, two extremes were identified: those who believed it was best to “say nothing” to their children about the disease, and those who believed it was important to establish an open dialogue. The former was based on specific beliefs held by parents. One belief was that children are happier if they are unaware of their parents’ illness (ref 26). In this regard, it is interesting to note the account of a mother whose daughter became a hypochondriac after seeing her go in and out of hospital several times (ref 27). Another belief was that children are less able to understand life events (and therefore also their parents’ health) (ref 28), and less able to understand and express certain emotions (refs 29–30). Parents who fell into this category emphasized that their children should not have seen them suffering (ref 31). On the contrary, they argued that it was important for children to always see their parents in good health because the parents’ illness should not have changed the normal course of children’s lives (ref 32). For example, a parent argued that if the father did not behave as he did before the illness, the children could have developed problems in the future (ref 33). In one statement, a parent said that although he understood illness was a natural part of life, he was still afraid of not being able to communicate this effectively to his child (ref 34).
At the other extreme there were parents who believed that maintaining an open communication with their children was important, even when they had to deliver difficult news (ref 35). These parents acted on the belief that this type of communication helps their children better understand and adapt to the disease itself (refs 36–37).
The role of professionals. A second sub-theme concerns beliefs about the role of professionals in supporting parents when communicating the illness to their children. This sub-theme also revealed a continuum, with parents who believed that professional support (e.g. from a psychologist) is useful in determining “the right way and time” to inform their children of the illness at one end of the continuum, and parents who believed that only they can determine “the right way and time” and that professional support is, therefore, unnecessary. One end of the continuum comprises comments from parents who sought help from a psychologist and were satisfied with the results, despite some initial scepticism about the value of this support (ref 38). At the other end of the continuum were parents who believed that they alone could find the “right key” to communicate the illness to their children because they know their children’s characteristics, and therefore know when to break the news and what terminology to use (ref 39). These parents emphasized the importance of instinct, intuition and emotion in communicating with their children (refs 40–41). They believed that professionals’ suggestions are too “standardized” to be useful (refs 42–43). They only considered support from a professional in case they would feel that something was “wrong” with their children (ref 44).
4) The strategies parents used to communicate the illness to their children
This topic covers the strategies parents used to talk to their children about the disease.
The interviewed parents questioned whether their chosen approach was appropriate. Parents feared that an incorrect communication may cause anxiety in their children (ref 45). They also questioned what information their children needed to know and what should be disclosed (ref 46). Even those who have suggested a light-hearted approach wondered how far they could go, given the serious nature of the subject. Interestingly, some parents focused heavily on what their children needed or wanted to know about cancer, while placing less emphasis on explaining how they felt physically and emotionally. For quotations examples please see Table 6.
Parents who prefer to remain silent. In line with the “Beliefs” theme, parents who did not feel able to communicate openly with their children about the disease used communication strategies such as minimizing its impact on their lives (refs 49–50), normalization (refs 51–52), avoiding the concept of terminal illness (ref 53) and reassuring children until they must prepare them for their death (ref 54). Parents emphasized that they have communicated “only what was strictly necessary,” believing that it was better to provide little information (ref 55) for fear that providing more details may cause anxiety in their children (ref 56). Communication was often limited to “practical” aspects (e.g. undergoing treatment), presented as a “shopping list,” where parents were careful not to reveal any fears or concerns (refs 57–58). They therefore avoided using terms such as “cancer” (ref 59), “tumour” (ref 60) and “metastasis” (ref 61), preferring the more reassuring terms such as “cyst” (ref 62) and “lump” (ref 63). Communication often took place shortly before an important event, such as surgery (refs 64–66), or when there was a significant change in the parents’ state of health (refs 67–69).
Some parents said they “know what their children know” about their illness, but preferred to avoid talking about it until their children took “the first step” (see also the topic “Perception of children’s understanding”). A discrepancy could sometimes be perceived between what parents said to their children and what they communicated through their behavior, even if they may not be fully aware of it (ref 71).
Parents who prefer an “open” approach. Conversely, parents who opt to discuss the illness with their children emphasized the significance of “constantly maintaining an open mind” regarding the topic. Rather than waiting for their children to bring the subject up, they introduced it themselves (ref 72). A fine illustration of this was a family where the mother, who had an operation for tongue cancer, found it hard to consume certain solid foods. This has turned into a source of amusement and humor during mealtimes (ref 73). This family has found a playful way to relieve the stress of a difficult situation.
For these parents, it was crucial to select appropriate terminology when communicating with their children, ensuring it was age-appropriate and aligned with their level of understanding (ref 74–75). As well as using simple, understandable language, creative methods based on images or simple metaphors could be employed, even with young children. The following patients’ quotations illustrate this: “He knows that Mummy has black ugly cells inside her body that need to be made colourful again. So she goes to hospital for treatment to make them colourful again. We explained to him that the doctors are working hard to make everything colourful again” (Patient 5). “Then I may have exaggerated a little by telling them that Mummy is getting stronger, like a superhero, thanks to this treatment. But I think they’re taking it all in good humour now” (Patient 1).
Some parents expressed a desire to prepare their children for the physical changes that treatment may have brought. They did this by explaining the possible scenarios that may have occurred (ref 76–77).
However, these parents needed to accepted all aspects of the illness, such as communication of the diagnosis, surgery and treatment, before they felt ready to tell their children (ref 78). By “feeling ready,” parents meant that they had come to terms with the diagnosis or deterioration of their health, and had a clear understanding of the potential outcomes (ref 79–80). This was an essential aspect, as it was based on the idea that they must be calm in the first place to communicate calmly and effectively. Parents tried to tell their kids about the illness whereas giving them hope for the future while they were getting treatment (ref 81).
In this regard, it is interesting to note a parent’s statement that ‘this must be the “correct” communication strategy because it is the same one used by doctors (ref 82).
Another practice observed in the interviews was that communicating the illness to children was mostly delegated to the sick parent, even in the presence of the other parent (refs 83–84), as if it were their task or responsibility. One parent reported that she was solely responsible for providing information to his child and did not accept anything his parents said about his illness, even unintentionally (ref 85).
Figure 2 summarizes some results from the themes ‘The beliefs that may have influenced how parents communicate the illness to their children’ and “The strategies parents used to communicate the illness to their children” and the conceptual connections between them.
Figure 2. A graphic summary showing the themes ‘The beliefs that may have influenced how parents communicate the illness to their children’ and ‘The strategies parents use to communicate the illness to their children’ and the conceptual connections between them.’
5) Parents’ perception of their children’s understanding of the illness
This topic covers how parents perceive their children’s understanding of the illness (for quotations examples, please see Table 7).
Table 7. Examples of quotations of the theme “Parents’ perception of their children’s understanding of the illness”
Uncertainty about what children have understood. Many comments mention that parents did not know exactly what their children understood about the illness and treatments. Some parents tried to pick up “signals” from their children’s understanding from their behavior because they found it difficult to introduce the subject themselves and communicate effectively. Sometimes these “signals” were easy to interpret, for example when a child calmly explained to their teacher why it was important to take care of their sick mother (ref 86). At other times, it was more difficult for parents to understand what their children have internalized. Examples include a child reproaching their mother for spending a lot of time in bed (ref 87) and a teenager expressing concern about the effect of CT scans on their mother’s mood (ref 88).
This was mainly an issue for pre-school and school-age children, who did not primarily use words to communicate and understand their sick parent’s condition, but rather perceive the “presence” of the illness through changes in the family routine (refs 89–91).
Regardless of the age, picking up on signals was even more difficult when there was an implicit agreement of “unspoken rules.” Parents who reported having acted as if “nothing was wrong” with regard to their illness also described a similar pattern in their children. Although children appeared to perceive that something about their parents’ health was not well, they, likewise their parents, behaved as if nothing was wrong (ref 92–93). Some parents said that their children “sensed” that something was wrong (ref 94).
This pattern of communication continued until the children felt ready to give their parents the “green light” to talk, letting them know that they were comfortable with opening up (ref 95). In these cases, parents were amazed by their children’s level of understanding and processing.
Similarities in communication styles between parents and children. In this respect, the lack of awareness among the interviewed parents regarding their children adopting their own communication styles is of interest. If openness to dialogue and communication about the illness was present among parents, the same was true for their children. Conversely, if parents struggled to communicate about the disease, their children also found it difficult (refs 5 and 6).
Parents also found it hard to understand their children’s emotions, often seeing them as a “black box” that could not be accessed (ref 97). Indeed, no instances were found where a parent described their child as calm, restless or irritable when discussing the illness or treatment.
Needs
We identified 57 needs, which were grouped into three macro-categories that were often not mutually exclusive: existential needs, support needs, and needs related to continuing to be and act as parents (see Table 8). These needs were derived from the themes presented above. For this reason, same quotations will not be shown as already presented.
Table 8. List of needs expressed by parents, divided by macro-areas
The needs that defined as “existential” were primarily related to the survival of parent as an individual. These included needs for parents to know the outcome of treatments or the progression of the illness, to understand their own struggles, to have their time and space respected by those around them and to be sure that, should they die, their family would be able to carry on functioning. Support needs varied and includedcare for themselves (e.g. physical and emotional support from loved ones and psychological support from professionals), as well as care and support for their children and, more broadly, the whole family. Many of these needs were related to improving the efficiency of the National Health Service and patient-centered care.
Finally, needs related to continuing to be and act as a parent included providing their children with a “normal” daily life, appearing strong and healthy and communicating effectively about their illness.
Discussion
This study has highlighted the many challenges faced by parents affected by cancer. The two biggest challenges reported by the interviewed parents were managing the complexities of daily life and communicating the illness to their children.
Parents who experienced these challenges often felt concerned, guilty, lonely and afraid of experiencing a physical and/or emotional “breakdown.” Guilt related to both worrying that, one day, their children will not be able to live a “normal” life and not having taught their children to be more independent in case they die. Guilt also emerged in Schiena’s study (Reference Scabini and Iafrate2019), where it was linked to striking the right balance between caring for oneself and caring for one’s children. In the same study, some parents also expressed this feeling when they had to rely on the community for help with their children’s daily lives, such as asking other parents to take their children to school or to cook for them, when support from family members was unavailable. These aspects did not emerge from this study’s interviews, possibly because, in Italy, grandparents often serve as the primary source of support for parents with young children (Zamberletti et al. Reference Zamberletti, Cavrini and Tomassini2018).
Other studies have emphasized the numerous concerns of parents with cancer, highlighting the need to ensure continuity and a sense of “normality” for their children, and the desire to continue being “good parents” (Semple and McCance Reference Semple and McCance2010; Schiena et al. Reference Schiena, Hocking and Joubert2019). In addition to the challenges of being a mother with lymphoma, Elmberger et al.’s study (Elmberger et al. Reference Elmberger, Bolund and Lützén2005) also highlighted some positive aspects identified by the women involved, such as their children becoming more responsible for household tasks like cooking and cleaning. By contrast, in the present study, mothers expressed strong concerns about not having made this transition. Despite social changes in Italy in recent decades, the traditional view of women as the “heart of the home” remains deeply rooted (Scabini and Iafrate Reference Scabini and Iafrate2019), which may explain their worry about not adequately “preparing” their children for their possible death.
The results of the present study reflect those of previous research highlighting the difficulties parents face in knowing when and how to talk to their children about the illness (Semple and McCance Reference Semple and McCance2010). Semple et al.’s literature review emphasized the significant challenges parents face when communicating about the illness. They noted that effective decision-making is essential, particularly with regard to when to start the conversation, which words to use and how much information to share.
Among participants, there was a widespread belief that children were too young to understand their parents’ illness, or that discussing it might cause psychological or behavioral problems. For this reason, parents often believed that their children should know as little as possible about their condition. References to the illness were frequently avoided and the choice of terminology was deliberate (for example, words such as “cancer” and “metastasis” were avoided). Parents also tended to hide moments of vulnerability; for instance, they tried to conceal emotions such as despair and fear, as well as the physical fatigue caused by the illness and its treatments. It is essential to study beliefs because, not only do they refer to individuals’ perceptions of reality, but they form a crucial part of how people interpret experiences. In this sense, this study’s findings show that beliefs are closely linked to communication strategies. From an intervention perspective, the present study suggests that knowing and understanding parents’ beliefs is crucial in order to work on communication strategies with their children.
Although experts have long emphasized the importance of speaking to children about illness and death, this remains a significant challenge for parents. Developmental psychologists agree that most children aged 5–8 are capable of developing a “mature” understanding of death, meaning they grasp its irreversibility, the fact that the body no longer functions, and how people can die (Hunter and Smith Reference Hunter and Smith2008). Christ (Reference Christ2000) notes that a child’s understanding of death varies based on their experiences, as well as their cognitive, emotional, and social capacities. In this sense, the literature consistently stresses the importance of being open and honest in a way that matches the child’s social, cognitive and emotional development (Monroe and Kraus Reference Monroe and Kraus2005). Even for adolescents, clear and empathetic communication from parents helps create a sense of predictability, helping them to understand what to do and when to do it (Goethals et al. Reference Goethals, Soenens and de Wit2019).
Another belief concerned the perceived usefulness of healthcare professionals in helping communicate the illness to children. Some studies reported that parents do not feel adequately supported by healthcare professionals when it comes to explaining the illness to their children (Semple and McCance Reference Semple and McCance2010). This study also reveals the belief that healthcare professionals were not the “right people” to support parents in this process. The underlying idea appears to be that professionals were perceived as unable to provide personalized support – that is, support that takes into account the child’s age and level of understanding. There seems to be a certain distrust of the abilities of those responsible for this task, which contributes to unspoken issues.
The practice of not communicating certain aspects of the illness to children – or not communicating at all – leads to the added burden of uncertainty about children’s actual understanding. This uncertainty was sometimes not resolved until the children themselves made it clear to their parents, either directly or indirectly, that they have understood the real situation. This aspect has not yet been explored, but it deserves attention as it can create spirals of “unspoken” issues that may further burden parents and affect children’s adjustment.
Another noteworthy finding of the present study is that there was a “mirroring” of communication styles between parents and their children in interviewees’ quotations, although they seem unaware of this. Some parents expressed surprise when describing how their children “don’t talk much” or struggle to express their feelings, yet they describe themselves in the same way. Similarly, other parents described their children as open to dialogue and eager to ask questions about the illness; these parents also reported using the same communication approach. The recent systematic review by Mckeown et al. (Reference Mckeown, Campbell and Dempster2025) highlighted that children may decide to avoid communication to protect their parents as well, this constrained pattern of communication with children’s parents appears reciprocal.
While the latter study represents the only reference found in the existing literature regarding the transmission of communication styles in the context of cancer-related communication, some additional studies highlighted the relationship between communication style and children’s adaptation to metabolic diseases. These studies have shown that an “open,” collaborative and empathetic parenting style improves metabolic and psychosocial outcomes (e.g. health-related quality of life and motivation) in children, in contrast to more intrusive, controlling, authoritarian or avoidant styles (Shorer et al. Reference Shorer, David and Schoenberg-Taz2011; Young et al. Reference Young, Lord and Patel2014; Goethals et al. Reference Goethals, Soenens and de Wit2019).
The needs of the interviewed parents were numerous and varied, and many of them were unmet. While some needs, such as receiving a definite prognosis, were legitimate but could not always be met, others could be addressed, such as improving the efficiency of the National Health System and making psychological support a standard care option for patients and their families. The parents in this study shared several needs that have already been identified in the general oncology population (such as “existential” and support-related needs), as they have been found in studies conducted within the same hospital (Tamburini et al. Reference Tamburini, Gangeri and Brunelli2003; Alfieri et al. Reference Alfieri, Brunelli and Capri2022, Reference Alfieri, Criscuolo and Chiappella2025). However, others needs were specific to being a parent and to having children at a particular stage in their life cycle. Understanding these parents’ needs is a starting point for addressing the current gap in the literature and for considering how to respond to these needs. For this reason, a preliminary draft of a needs checklist has been developed, which future studies could use to create a validated tool. Once its psychometric properties have been tested, the checklist could be used widely in clinical settings as a practical screening tool to identify needs at key stages of parents’ care journeys. It could, for instance, be structured as a list of yes/no items or as a Likert scale (e.g. from 1 = “not at all” to 5 = “very much”). Once finalized, this checklist could be administered alongside a quality of life (QoL) instrument to systematically monitor needs during key phases of the illness trajectory (e.g. diagnosis, treatment, follow-up and end of life) (Brunelli et al. Reference Brunelli, Zito and Alfieri2022).
Engaging in a process of reflexivity, we acknowledge that our analysis is informed by our way of being and seeing the world. In particular, we would like to highlight the characteristics of the three researchers who carried out the analyses. Firstly, they were three women, who may have had a different perspective from that of men when it comes to constructing meanings. Secondly, two of the researchers have young children, which has led to a strong emotional involvement in the issues addressed and in the “weight” attributed to the meanings constructed. We explain these aspects far from considering them biases, but because we are aware that they are important aspects of the narrative we have created, as required by the approach used (Braun and Clarke Reference Braun and Clarke2019, Reference Braun and Clarke2024).
Study limitations
This study has certain limitations that should be taken into consideration. Firstly, participants were recruited from a single Comprehensive Cancer Centre. While this enables targeted interventions to be developed to support patients within the same hospital, it also limits the generalizability of the findings. Furthermore, it is worth considering that the majority of the parents involved were engaged in psychological support care pathway. This may have increased the awareness of their own characteristics, abilities and needs, resulting in a bias. Secondly, as no specific analysis was conducted regarding the age of the children, differences likely exist in parenting approaches or communication styles depending on whether the children are pre-school, school-age or adolescents. Third, a qualitative study does not allow us to “prioritize” needs: currently, there is a snapshot of all the needs expressed by parents, but it is not known which of these are “vital” and which are not.
Clinical implications
The results of this study have several important practical applications. Communicating with children is a particularly sensitive and crucial aspect of a parent’s experience of cancer, and healthcare professionals should recognize this rather than leaving it solely to the parent. This is essential to prevent feelings of concern, guilt and loneliness from escalating to the point of emotional collapse. As previous studies have highlighted (Schiena et al. Reference Schiena, Hocking and Joubert2019), oncology services should routinely record whether the patient has underage children. Too often information is limited to the patient’s health status without considering what elements may represent an additional burden or, conversely, a source of support. Secondly, healthcare professionals must be adequately trained to manage issues arising from interactions between parents with cancer and their children under the age of 18. This involves offering appropriate support to help parents improve their communication skills and assisting children in identifying and coping with distress and stress related to their parents’ illness. These interventions aim to enhance the parents’ quality of life and prevent or alleviate psychological distress among their children. Support is needed throughout all phases of the illness, including diagnosis, treatment and follow-up, as well as the terminal and end-of-life stages (Christ Reference Christ2000).
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S1478951525101272
Data availability statement
The data that support the findings of this study are available from the corresponding author upon reasonable request.
Acknowledgments
The authors would like to thank Dr Anna Violante for her linguistic review. A special thanks to all parents who contributed to this study by courageously discussing challenging and distressing topics. A heartfelt acknowledgment is sent to those parents who have passed away, yet remain alive through their children’s heart and memories. Thank you!
Funding
This work was part of the project “Pathways of support for children and adolescents in an onco-hematological context: Assistance, Research, and Education” and supported by the Ministry of Work and Social Politics under the Fund for the Assistance of Children Affected by Oncological Diseases (n.1/2023) in partnership with the Italian associations of volunteers against cancer (Associazione Nazionale Volontari Lotta contro i Tumori - ANVOLT).
Conflicts of interest
None.
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