The Child's Voice in Paediatric Oncology: An Interpretative Phenomenological Analysis of the Child's Lived Experience of Parenting in Hospital‐At‐Home

ABSTRACT

Background

Hospital‐at‐home (HaH) is becoming more widely available to children with cancer, providing care in a familiar environment while upholding medical safety and quality. Little is known, however, about how these children experience their parents' caregiving in the context of HaH, how they perceive and interpret parental roles, what they require in daily care, and how they communicate these needs.

Methods

Seven children aged 7 to 12 years undergoing home‐based cancer treatment were interviewed using interpretative phenomenological analysis (IPA). These interviews, conducted via telephone, were open‐ended and exploratory, allowing the children to express their experiences freely.

Results

One major theme—‘the child's voice’—emerged, encompassing two interrelated sub‐themes: (1) parental presence as a condition of care; and (2) the strategies children use to express their voice. Parental presence was described as essential for emotional security, predictability and meaning, serving as both a psychological anchor and a temporal organiser in the child's daily life. The children expressed their voice through multiple forms—verbal, gestural, symptom‐focused or silent—revealing their active participation in care and their capacity to preserve relational and emotional continuity within the family setting.

Conclusions

Children with cancer perceive HaH as more than a transfer of hospital treatment; they experience it as a shared relational experience built on parental presence and mutual understanding. Recognising and supporting the child's voice in its various forms is vital for ensuring that HaH becomes not only a site for medical care but also a meaningful space for living.

Relevance to Clinical Practice

Our findings highlight the need for healthcare teams to take into account the variety of children's voices and grant them a real place in HaH. They are not simply recipients of care, but also active participants in the care relationship, capable of expressing their needs, emotions, and expectations in their own way.

Patient or Public Contribution

No patient or public contribution.

Key Points

• Hospital‐at‐Home in paediatric oncology is not merely a relocation of medical care, but a relational care experience shaped by parental presence, emotional security and daily continuity.

• Children's voices are expressed not only through words, but also through gestures, symptoms, behaviours and silence, requiring clinicians to develop greater sensitivity to implicit forms of communication.

• These findings support child‐centred and family‐integrated models of home‐based cancer care in which children are recognised as active participants and parents are supported as key partners in making care safe, meaningful and liveable.

1. Introduction

According to the French National Cancer Institute, approximately 2000 new cases of cancer are diagnosed in children under the age of 15 years annually in France (Cancer, INcA ²⁰²⁵). Although therapeutic advances have significantly improved survival rates, paediatric cancer is widely recognised as a highly stressful experience that challenges a child's psychological adjustment (Van Schoors et al. 2017). The diagnosis and treatment of cancer cause significant disruptions to a child's life, including the experience of distressing procedures, unpredictable physical symptoms (such as pain, nausea, fatigue and hair loss) (Rodriguez et al. 2012). Children are at risk for negative psychosocial outcomes, including symptoms of depression, anxiety and post‐traumatic stress (Pinquart and Thorwarth 2025). Taken together, these findings demonstrate that paediatric cancer affects not only the child's physical health but also their emotional security, daily routines and developmental adjustment. They point to the central role of supportive care relationships throughout treatment.

In this context, hospital‐at‐home (HaH) is increasingly being made available to children with cancer (Hansson et al. 2012) as a way of delivering medical treatment in the patient's home under equivalent conditions of safety and quality. This approach has proven to be both feasible and effective (Carter et al. 2014). There are different models for organising, delivering and financing HaH across countries and within individual countries (Parab et al. 2013). Although paediatric HaH remains limited in France, it is expanding significantly, with an average annual growth rate of 8% between 2016 and 2020. Today, it accounts for 4.7% of all HaH admissions (Baussant‐Crenn et al. ²⁰²³). This development suggests that hospital‐at‐home is emerging as an increasingly important setting for delivering paediatric oncology care, warranting closer attention to its clinical implementation and the experiences of children and families. In this article, we use the term hospital‐at‐home (HaH) consistently to refer to the organised delivery of hospital‐level cancer care in the child's home.

In many countries, HaH is typically the preferred option of children and parents since it provides the comfort of a familiar environment combined with the reassuring presence of family and friends (Carter et al. 2014). A systematic review concluded that there is no universal preference for HaH: the choices are heterogeneous and evolving. They may also be contingent on factors such as the quality of communication with healthcare professionals, confidence in hospital staff, the availability of care services, the option of a home environment and the child's wishes when they are able to express an opinion (Noyes et al. 2022). While HaH provides benefits in terms of quality of life and family proximity (Verberne et al. 2019), it simultaneously transforms the home into a hybrid living and care space, where clinical tasks permeate ordinary routines and require intensive daily support.

Numerous theoretical models have been developed to conceptualise child functioning following a paediatric cancer diagnosis, with the social‐ecological approach being the most widely used (Bronfenbrenner 1979). This model posits that children exist within multiple systems, including larger ecosystems (e.g., hospital settings) and microsystems (e.g., parents and family). It emphasises the importance of a family system in understanding the child's adjustment and well‐being. In this context, children's adjustment to cancer cannot be understood solely in medical terms; it must also be considered alongside their relational environment and everyday interactions. From this viewpoint, children with cancer express a primary need to be free from pain: they expect adults to assess their discomfort and to anticipate invasive procedures in order to preserve their comfort (WHO ²⁰²¹). In addition, children want predictability: familiar carers, consistent information and age‐appropriate explanations (Clapp et al. 2019). Their voices must be heard in decisions that affect them, in accordance with the international charter on the rights of hospitalised children (EACH ²⁰²⁵). In HaH, these needs are enacted within family routines, potentially intensifying the child's reliance on parental care, advocacy during procedures, symptom management, day‐to‐day structure and emotional reassurance. These findings highlight that parents are involved in the management of the child's health conditions and daily caregiving (Coyne et al. 2016). A study by Lazzarin et al. (2018) showed that all 33 children receiving HaH expressed a need for their parents' help with eating, personal hygiene and taking medication (Lazzarin et al. 2018). Even under normal circumstances, children rely on their parents for care, comfort and rest. Cancer and its treatment heighten this dependency significantly, leading children to seek even greater parental presence and support to feel safe, soothed and cared for in everyday life (Kim et al. 2024). These studies as a whole indicate that children's needs in cancer care are not limited to the clinical; they are also relational, involving comfort, predictability, emotional reassurance and recognition of their perspective. In the HaH setting, these needs are likely to become even more closely tied to parental availability, since parents are the main figures through whom care is organised, interpreted and emotionally mediated.

Although previous research has highlighted the central role of parents in paediatric oncology and has pointed to children's needs for comfort, predictability and emotional support, little is known about how children themselves perceive parental care when cancer treatment is delivered through HaH. Current research has not adequately explored how children express their care needs, what these needs entail within a medicalised home environment and how they make sense of parental roles. This missing knowledge is important because HaH shifts part of cancer care into everyday family life, potentially reshaping both the meaning of parental presence and the ways children experience and communicate care. A phenomenological approach is well suited to examining these experiences as they are perceived and described by the children themselves. Accordingly, this qualitative study aims to explore how children with cancer make sense of and experience home‐based care.

2. Methods

This research forms part of a larger PEP‐HAD study—Parenting and Paediatrics in Hospital at Home (Parentalité et Pédiatrie en Hospitalisation à Domicile)—that aims to describe parenting and parent–child relationships when a child has cancer and is HaH.

2.1. Study Design

We adopted a methodological approach suited to generating the knowledge needed to answer the following research question: How do children with cancer experience and make sense of parenting when undergoing home‐based treatment? To this end, we employed interpretative phenomenological analysis (IPA), a qualitative method intended to explore the complex system of meanings attached to a unique, subjective and profoundly intimate experience (Smith et al. 2021). IPA has its epistemological roots in phenomenology, hermeneutics and the idiographic approach (Smith et al. 2021), three major influences that collectively inform its basic principles. Phenomenology centres on the experience (phenomenon) and how things appear to individuals during this lived experience. Hermeneutics encompasses the theory of interpretation and refers to an active interpretive approach. IPA incorporates a double hermeneutic: the researcher attempts to make sense of how the participant interprets their own subjective experience (Fade 2004). Ideography focuses on the in‐depth analysis of individual cases. IPA typically involves a small sample (1 to 8 participants), with an emphasis on understanding the unique perspective and experience of each participant (Smith 2024).

2.2. Recruitment and Participants

Participants were recruited between June 2024 and March 2025 in two organisations: Fondation Santé Service (Levallois‐Perret, Paris) and Hôpital à Domicile des Vignes & des Rivières (Libourne), both of which provide hospitalisation, medical care and psychosocial support to patients at home.

The inclusion criteria were as follows: children aged between 7 and 12 years old diagnosed with oncological or haematological cancer, receiving cancer treatment at home, and able to speak and understand French. The exclusion criteria applied to children who had completed treatment or were in remission or recovery.

For the recruitment process, the HaH teams—nurses, paediatricians and psychologists—first identified eligible participants. They approached all the parents and children with cancer who met our criteria (n = 12) during regular home visits. The study was presented to the children in the presence of their parents to clarify its purpose and the terms of participation, while also allowing time for reflection. An age‐appropriate information leaflet was provided and explained to the children. Simultaneously, a more detailed information sheet was given to parents. The researchers were especially attentive to minimising any potential coercion during recruitment. While the HaH teams first identified eligible families, participation was presented as entirely voluntary. In addition, families were explicitly informed that declining to take part would have no effect on the child's care, treatment or relationship with the clinical team. To reduce power imbalances between adults and child participants, the study was explained in age‐appropriate language, and children were given time to reflect and ask questions. Their active willingness to participate was considered essential in addition to parental consent. Children were also informed that they could decline to answer any question or stop the interview at any time without providing a reason.

Some children (=5) refused to take part but did not explain their reasons. Children who agreed to participate in the study (n = 7) provided oral consent, while their parents gave their consent by signing the consent form and providing a telephone number where the interviewer (the first author) could reach them. The child's agreement was treated as an ongoing process rather than a one‐time event, and participation proceeded only when both the child and parent were willing to take part.

Since this researcher had no prior relationship with the children, the first telephone call served to build trust between him and the participant. The first telephone call further minimised the risk that participation in the study would be perceived as an extension of clinical treatment or as something expected by the healthcare team. It also provided an opportunity to introduce the researcher, present the study, answer any questions and schedule an appointment at a time that suited the participant based on their preferences: in‐person, by phone or via video conference. All the children who agreed to take part opted for a telephone interview, their parents explaining that they preferred not to receive visitors. The second call was used to conduct the research interview.

2.3. Data Collection

The interviews started with the children providing background information (such as age, family constellation, cancer diagnosis and the duration of their HaH) in order to contextualise their experiences. In accordance with French legislation (Loi Informatique et Liberté, CNIL, 1978), it is strictly prohibited to collect and record directly or indirectly information indicating the ethnic origins and religious affiliations of individuals, and such information is not provided.

The interview guide was developed to be accessible to children aged 7–12 years while remaining closely aligned with the study's aim of exploring the lived experience of parental care during HaH. This is consistent with recommendations that research tools for children should be developmentally appropriate, child‐friendly and closely matched to the purpose of the study (Schweiger 2024). Questions were intentionally open‐ended and experience‐focused, inviting participants to describe concrete situations, feelings and meanings related to parental presence and support in everyday life at home. Illustrative questions included the following: ‘Can you tell me what it is like for you to be cared for at home when you're ill?’; ‘What do your parents do for you at home when you need care?’; ‘How do you feel when your parents help you during treatment or when you don't feel well?’; ‘What do you need most from your parents when you are at home?’; and ‘Can you tell me about a time when one of your parents helped you in a way that was important to you?’ Participants were encouraged to speak freely, with follow‐up prompts used flexibly to deepen their accounts while remaining attentive to their own words and meanings.

The interviews were conducted by the first author, who is a psychologist specialising in the care of adolescents and children with cancer. Each interview was recorded with the consent of the participant and transcribed in full by the researcher. Each participant's records were coded to ensure confidentiality, and all first names were changed to ensure anonymity. The interviews lasted between 30 and 48 min.

2.4. Ethical Considerations

The study received approval from the Research Ethics Committee of the University of Strasbourg under the number Unistra/CER/2024‐27. It has been included in the register of processing activities with the reference number 5580, confirming its compliance. Given the vulnerability of the participants, particular ethical attention was paid to voluntary participation, the child's level of understanding and respect for any expression of dissent. Children were asked for their assent in addition to parental consent, and they were reminded that participation was voluntary and could be withdrawn at any stage without any consequence for their care.

2.5. Data Analysis

The data was analysed using a standardised IPA procedure to ensure methodological rigour. We followed the six‐step procedure outlined by (Smith et al. 2021): reading and re‐reading the interview transcripts; taking initial notes with descriptive, linguistic and conceptual comments; developing emerging themes; identifying connections across themes; moving on to the next case; and looking for common patterns between different cases. IPA does not aim to develop general rules but to remain attentive to the subtleties of individual experiences in all their complexity.

The analysis was conducted on a case‐by‐case basis, with themes generated for each participant. The first case was analysed in depth, searching for points of descriptive, linguistic and conceptual note. These observations were then translated into emergent themes, generating a list of superordinate themes for the first case with reference markers pointing to supporting evidence in the transcript. This process was repeated for each case. The themes were subsequently reviewed, and points of convergence and divergence identified, culminating in a master table of themes. Lastly, an interpretative account was produced, highlighting and analysing the children's experiences through experiential themes and illustrative discourse. The first author conducted the analysis, supported by a senior member of the team who monitored each stage of the process, checking the alignment between the analysis and the data.

Participants did not member check their analysis for validation purposes out of respect for their emotional vulnerability: revisiting the transcripts or interpretations might have required the children to relive painful experiences related to their cancer and treatment. In line with ethical and clinical considerations specific to vulnerable populations, the research team prioritised the children's emotional safety over procedural validation, consistent with the recommendations for qualitative research in paediatric contexts (Carter and Ford 2013).

Throughout this study, the authors took great care to adhere to the criteria of scientific rigour established by qualitative analysis (Smith et al. 2021; Yardley ²⁰⁰⁰). We acknowledge that other credible interpretations were possible in keeping with interpretivist epistemology (Osborn and Smith 1998). The two researchers who analysed the interviews have psychological experience in paediatric oncology. This expertise informed the interpretation of the results and was recognised as an influential factor in the analytical process, as hypotheses and interpretations form part of qualitative research (Braun et al. 2022). Notes were taken after each interview to ensure reflexivity and transparency (Nowell et al. 2017). More specifically, it is likely that the interviewer's professional background as a psychologist in paediatric oncology shaped both the interview process and the interpretation of the data. On the one hand, this clinical experience may have facilitated attunement to children's emotional expressions, the use of sensitive follow‐up prompts, and the creation of a containing space where vulnerable experiences could be articulated. On the other hand, it may also have reinforced adult–child asymmetries, with the interviewer potentially being perceived as an expert or helping professional, which may have influenced how freely some children disclosed distressing or intimate emotional experiences. In analytic terms, while clinical familiarity with paediatric oncology may have enhanced contextual understanding, it also carried the risk of interpreting children's accounts through pre‐existing professional assumptions. These issues were addressed through ongoing reflexive note‐taking after interviews, repeated revisiting of the transcripts, and regular discussions with a senior researcher in order to remain attentive to what emerged from the children's own words.

The participants were exclusively children, which allowed for an in‐depth exploration of their subjectivity in a context of great emotional vulnerability. The first author, who conducted all the interviews, is a male psychologist who was previously unknown to the participants. This external yet clinically informed position may have shaped the interviews in several ways. It may have facilitated openness by offering a neutral, non‐familial listener who was able to respond sensitively to signs of vulnerability, while also potentially limiting some disclosures due to age, gender, professional status and the asymmetry inherent in an adult clinician‐researcher speaking with children. The interview situation also positioned the researcher as the recipient of the child's account and, subsequently, as an interpreter responsible for conveying that narrative in the analytic process. Accordingly, the child's voice was not treated as a transparent or self‐evident expression but as something addressed within a relational encounter and later represented through research writing. This conferred a particular ethical and interpretive responsibility on the interviewer: to remain attentive to the child's own meanings while recognising that these meanings were inevitably filtered through an adult, professional and analytic standpoint. Reflexive practice was thus essential for examining how the interviewer may have shaped children's willingness to disclose emotional experiences. It was equally important for maintaining caution in how the child's voice was selected, interpreted and represented in the final account. Reflexivity was maintained throughout the research process, as the researcher continuously reflected on his position, emotional responses and interpretative assumptions in order to remain as close as possible to the children's lived experiences.

3. Results

Our sample consisted of seven children. Their sociodemographic characteristics are shown in Table 1. Further information is shown in Table 2.

TABLE 1.

Socio‐demographic characteristics.

	Children (n = 7)
Age (mean and range)	9.5 years (range: 7–12)
Sex
Boy	3
Girl	4
Child's diagnosis
Sarcoma	1
Lymphoma	2
Leukaemia	1
Brain tumour	2
Bone tumour	1
Time since diagnosis
0–3 months	1
4–6 months	3
7–10 months	3
Duration of HaH
0–3 months	3
4–6 months	3
7–10 months	1

TABLE 2.

Participants.

No.	Name	Age	Sex	Diagnosis
1	Anne	7	Girl	Lymphoma
2	Sophie	10	Girl	Brain tumour
3	Marie	12	Girl	Bone tumour
4	Manon	9	Girl	Brain tumour
5	Clément	12	Boy	Sarcoma
6	Alex	8	Boy	Leukaemia
7	Edgar	7	Boy	Lymphoma

3.1. Analysis

3.1.1. The Voice of the Child

3.1.1.1. Parental Presence as a Condition of Care

All the children in the study expressed a preference for home‐based care. HaH in isolation, however, was not sufficient. What made the experience bearable was the continuous presence of their parents. In fact, HaH for these children was inseparable from parental presence: being cared for meant ‘being‐with’. The child's voice associated home with the presence of their parents—who was there, when and for how long—as the essential condition for predictability, which emerged as the central expression of their experience. Interpretatively, this suggested that for these children, care at home was not experienced primarily as a set of medical procedures but as a relational condition in which parental presence made illness more tolerable, intelligible and temporally manageable. What mattered was not simply being treated at home but being held within a dependable human environment. As Manon said:

My mum didn't work, even when I wasn't ill. And since I've been ill, my dad has stopped working to look after me and my little brother. I really like it when my parents are with me, it's very important (Manon, 9 years old).

Manon described a clear ‘before’ and ‘after’ her cancer: her father's decision to stop working, combined with her mother's previous availability, refocused the household on caregiving and ensured continuous parental presence. In a similar vein, Anne explained:

I want my parents to be with me all the time. My mum doesn't work anymore so she can look after me. She stays with me all the time. And my dad is still working, but when he finishes, he comes straight home to be with me (Anne, 7 years old).

Parental presence was particularly important for Anne, but unlike Manon, she highlighted a rhythmic presence: mother during the day, both parents in the evening. The evening presence of both parents marked the end of the day, which seemed to function as a ritual, transforming care into a predictable routine. For Anne, ‘being‐with’ did not just mean receiving help; parental presence gave meaning to her experience and, in addition to specifying who should be there, also structured ‘when’ and for ‘how long’, underscoring the need for continuity. Anne and Manon's narratives reveal that parental presence held different meanings within their subjective experiences. At a more profound level, these accounts showed that parental presence was not only desired but also existentially organising. The child's experience of illness appeared here as inseparable from the availability of adults who provided continuity across time, space and bodily vulnerability. Yet this need for continuity also revealed a tension: the more the illness disrupted ordinary life, the more the child's sense of stability seemed to depend on the reliable presence of others. Dependency was therefore intensified but not passive. In their own way, both of the girls in the study articulated preferences, expectations and temporal markers that demonstrated an active orientation toward what made care feel bearable. Another participant, Alex, explained:

My mum, for example, gives me my medication at home. She cooks for me, and she helps me wash and get dressed. And my dad likes to read me stories, and to play Lego (Alex, 8 years old).

Alex describes the distribution of responsibilities clearly: his mother managed practical care, while his father performed playful and narrative rituals (reading stories and playing Lego). The continuous presence of his parents and the care they provided seemed to create predictable routines for Alex, which organised his practical environment and helped maintain continuity, predictability and comfort within the home setting. In other words, for Alex the presence of his parents in tandem with their practical care served as a point of reference for external organisation faced with care at home—who did what, when and how—and stabilised the rhythm of daily life. From an IPA perspective, Alex's account can also be read as demonstrating how agency is distributed rather than absent. His voice did not express independence from parental care but reflected an active awareness of how care was organised around him. In differentiating what each parent did, he showed that he was not merely receiving care passively; he was also making sense of a relational system that enabled him to remain oriented amid the uncertainty of illness. Alex's dependence on parental routines thus coexisted with an interpretive capacity to identify, distinguish and rely on the structure they provided. In contrast, for other children parental presence was much more than just practical support. Marie developed her own perspective:

I feel good with my parents, and I want them to be with me all the time. They reassure me. I can manage the injections better, I'm not afraid. I feel safe with my parents (Marie, 12 years old).

In contrast to Alex, Marie clearly established parental presence with emotional care. Her voice articulated, above all, a wish for her parents to be present. As well as making her feel good, their presence was seemingly linked to emotional availability and psychological comfort, as she perceived her parents as protective, reassuring, loving and calming figures. In this way, Marie described a state of inner security made possible by the proximity of her parents, which helped organise her internal and psychological state. Marie's account also highlighted an important ambiguity in the child's voice: the wish for parental closeness might have signalled both emotional security and heightened vulnerability. Her ability to ‘manage the injections better’ when her parents were present suggested that agency was not opposed to dependency but enabled through it. In this context, parental presence did not diminish the child's capacity to cope; rather, it appeared to scaffold it. What emerged was a relational form of agency, whereby the child was better able to endure, regulate and participate precisely because trusted others were near.

Across the children's voices, parental presence operated as both an external anchor and an internal regulator, restoring continuity between the home, the illness and the self. The children thus tended to view their parents simultaneously as practical, adaptive resources and as central figures of security and continuity, capable of responding to their immediate needs. In other words, the child's voice was not only relational (a ‘being‐with’) but also structuring (a ‘holding‐together’), which seemed to give the children a sense of confidence despite the medicalisation of everyday life. More fundamentally, this theme suggested that parental presence acted as the enabling context that kept the child psychically and practically connected to everyday life in the midst of illness. The children's accounts did not depict care as the restoration of autonomy in any simple sense. Rather, they revealed a more complex experience in which vulnerability, dependence and agency were tightly intertwined: the child needed the parent in order to feel safe, yet within that dependence the child still expressed preferences, meanings and forms of participation. The child's voice therefore emerged not as the voice of an isolated, self‐sufficient subject but as the voice of someone whose capacity to endure and make sense of care was sustained through relationships.

3.2. Children's Strategies for Expressing Their Voices

During their HaH, children did not simply ‘receive’ care: they also actively positioned themselves in relation to their parents and tried to make their practical and emotional needs heard in various ways, giving their voices multiple forms. Some children expressed their voice through explicit words, as Edgar did:

When I need something, I ask my mum, or my dad when he's at home, because he works during the day. There are some things I can't do because I'm small, and other things I don't do anymore since I've been ill (Edgar, 7 years old).

Edgar's request referred to practical and functional assistance, emphasising the expected presence of his parents. This highlighted the child's limited abilities due to his age and illness, while also emphasising his capacity to assess his own needs, what he could not do on his own and what he needed help with. To have his needs met, it seemed that Edgar simply had to express them explicitly, to make his voice heard. At the same time, Edgar's account indicated that explicit speech was not merely a sign of competence but also a response to dependence. His voice emerged from an awareness of limitation: he knew what he could no longer do alone and used words to mobilise parental support. Agency therefore appeared not as independence from care but as the child's capacity to identify need and actively recruit others into responding to it. In a similar way, Marie explained:

When I'm in pain somewhere, I ask mum to give me the medication the doctor recommended. Sometimes the pain goes away, but sometimes I'm still in pain and mum comes to give me a hug (Marie, 9 years old).

Even though Marie expressed her needs explicitly, she focused on her physical sensations. This explicit expression showed that pain was not merely a symptom to be alleviated, but also a relational experience that she sought to transform and share. Beneath her complaint, a dual expectation can be interpreted: a medical response that reassured through reference to the doctor's expertise, and an emotional response that soothed through the familiar and tender gesture of the parent. It seems that by combining these two registers, Marie tried to make her pain bearable, predictable and shared. Thus, underneath these verbatim accounts lay two types of demand combining two types of assistance: explicit and implicit. This evocation emphasised the existence of implicit demands. Marie's account likewise revealed an important ambiguity in the child's voice: even when children spoke explicitly, their requests often exceeded the literal content of their words. Asking for medication was also a request for containment, and a complaint of pain was also a way of seeking recognition, comfort and co‐regulation. In this sense, the child's voice could not be reduced to the verbal statement alone: it conveyed layered meanings in which bodily suffering, emotional need and relational expectation were closely intertwined. Clément in turn said:

When I'm tired, I don't say anything, but I go and lie down next to mummy, and she understands that I need a cuddle or some rest (Clément, 12 years old).

Clément expressed his needs through an implicit voice, using gestures to communicate a request to his parents about his expectations. From a phenomenological perspective, the gesture (drawing closer) became a meaningful aspect of the lived experience which reflected an implicit need for reassurance, a silent call for reassuring closeness in a moment of fatigue or vulnerability. In a similar way, Alex commented:

When I have a tummy ache, I hide under my blanket and don't move, so mummy comes to see me and knows that something is wrong (Alex, 8 years old).

Like Clément, Alex conveyed an implicit demand, using his attitude to signal that something was wrong. This non‐verbal, implicit attitude functioned as a readable cue that solicited proximity without explicit words. These accounts suggested that some children did more than simply alternate between speaking and not speaking; they strategically modulated how visible or explicit their needs became. Gesture, posture or withdrawal may have allowed them to communicate distress while protecting themselves from the effort or exposure involved in direct verbalisation. Here again, vulnerability and agency coexisted: while children were dependent on parental interpretation, they nevertheless actively shaped how their need was presented and how close the parent was invited to come. In contrast, some children remained silent without articulating anything:

Sometimes I don't say anything, but mum still understands when I'm in pain or tired. She can see it in my head or read it in my eyes (Marie, 12 years old).

In this form of expression, Marie did not speak; instead, she withdrew—not out of refusal to speak, but to ‘say’ something in a different way. Through this silent voice, Marie did not seek to explain herself but to be understood without having to justify herself. Her silence was not empty, but inhabited: it carried an expectation, an implicit request for attention and understanding. It was another mode of presence: an embodied, meaningful silence inviting parental interpretation. Being understood without words meant being recognised and validated in her lived experience. This silent form of expression also pointed to a tension at the heart of the child's voice: the wish to be known without having to expose themselves fully. Silence functioned not merely as a communication but also as a protection from the burden of explanation. Thus, the child's voice was not always a movement toward fuller disclosure; it could also be a way of regulating proximity, intensity and emotional exposure within the parent–child relationship.

The child's voice during HaH, whether explicit, implicit (through gesture or attitude), physical (centred on expressing a symptom) or silent, always expressed a central requirement: to provide for their own needs (what they need to feel secure, understood and supported) by making demands (what they ask for) and expressing expectations (what they anticipate and hope for from their parents). This voice was not limited to signalling an immediate need or care; it also expressed a more fundamental requirement: participating in the configuration of care that is bearable, understandable and liveable for the child in their own home. At a deeper level, this theme indicated that the child's voice in HaH was not a single, stable phenomenon but a flexible relational practice through which children negotiated care from within vulnerability. Whether voiced through speech, bodily complaint, gesture or silence, the child was not simply describing an internal state but also attempting to shape the response of others. What emerged, therefore, was a form of situated agency: children remained profoundly dependent on parental attentiveness, yet they actively oriented how care was requested, interpreted and made tolerable. The voice of the child appeared here not as the antithesis of dependence but as one of the ways dependence was lived, organised and rendered bearable.

4. Discussion

This study explored how children with cancer experience parental care during HaH. Using an IPA approach, the analysis highlighted that children with cancer perceive and experience HaH through two closely related dimensions: parental presence as a foundational condition of care, and strategies for expressing their own voice within the caregiving relationship. These two sub‐themes describe the child's subjective experience in a context of profound vulnerability, where they attempted to create a space of psychological and relational continuity in the face of the illness.

Parental presence emerged as the primary requirement for HaH. In addition to being a source of logistical support, it was also a psychological and relational resource that made care possible. For these children, home was not defined by a physical location, but by a presence: that of their parents, who provided continuity, predictability, and emotional security. This observation is consistent with the perspectives derived from attachment theory (Bowlby 1988), which posits that parental closeness serves as a secure base that allows the child to regulate their distress and explore the world even in the face of adversity. In the context of paediatric cancer, several studies have shown that parental presence plays a major role in helping the child cope with treatment, manage its side effects, and tolerate pain (Liu et al. 2020; McCarthy et al. ²⁰¹⁶). In the literature, parental presence offering both practical and emotional support is also associated with a reduction in psychological stress, depression and anxiety (Liu et al. 2020).

Our findings build on these observations: parental presence is not limited to physical or psychological support but acts as an organisational structure, stabilising both the child's internal (i.e., psychological) world and the external care environment. Accordingly, parental presence becomes a horizon of meaning: it lends coherence to the child's experience, sets the pace of time and transforms care into a shareable experience. This dynamic has been identified as a major protective factor in paediatric cancer, reducing anxiety and promoting emotional security (McCarthy et al. ²⁰¹⁶). The child's sense of security and parental presence depended on their parents' ability to remain available, which in HaH may itself require coordinated professional support. The parents experienced a wide range of emotions related primarily to their child's suffering, such as anxiety, fatigue, loneliness, helplessness and stress (Kirakosyan et al. 2025). Nevertheless, they maintained a consistent caregiving presence. This included organising routines, providing practical assistance and a calming proximity that made HaH predictable and safe. These findings further suggest that the sustainability of parental presence in HaH should not be taken for granted but treated as a clinical and organisational issue. If parents are expected to maintain routines, provide practical care and remain emotionally available, multidisciplinary support becomes essential. In practice, this means that nurses, physicians and psychologists need to work together to coordinate treatment delivery. These professionals must also help parents structure daily care routines, recognise signs of emotional overload and find ways to remain available to their child without becoming overwhelmed. Providing this type of support is likely to benefit children directly, since their sense of safety, continuity and emotional containment appears closely linked to the parent's own capacity to cope in the home setting.

Regarding the strategies employed by the children, our findings suggest that far from being passive recipients of care, they actively participate by making their voices heard in diverse ways to articulate their practical and emotional needs. This observation aligns with previous research indicating that children with cancer reported employing multiple communication strategies to preserve a sense of agency and relational continuity with their parents and caregivers, even in situations of dependency and physical vulnerability (Phiri et al. 2023). The main coping mechanisms identified among children with cancer include problem‐focused strategies (such as planning and seeking information), emotion‐focused strategies (such as emotional expression or seeking comfort), and avoidance strategies (such as denial or distraction) (Phiri et al. 2023). In a cultural context, the most commonly reported coping strategy used by Chinese children with cancer was self‐control (emotion‐focused) (Li et al. 2011). Our findings extend these observations within the context of parental care, highlighting that in HaH settings, the child's voice served as a means of adjusting to cancer care in the family environment while maintaining continuity. The children turned to explicit, implicit (gestural or attitudinal), symptom‐centred or silent strategies to negotiate their place within the care relationship, striving to shape how care was delivered and experienced at home. Whereas verbal communication represented an explicit form of request, reflecting trust in parental availability, implicit forms aimed to elicit a response from the parents. Silence, finally, appeared as the most complex mode of expression: a wordless way of being understood and recognised, signalling a deep need for emotional attunement. Studies have shown that children's non‐verbal cues often convey distress or discomfort before it is expressed verbally (Kirakosyan et al. 2025; Lemos et al. ²⁰²⁰).

These diverse modes of expression show that the child's voice is not merely a functional sign of care; it represents a dynamic relational process through which children seek to be understood, comforted and actively involved in the construction of a bearable and meaningful HaH experience. This interpretation aligns with Piaget's theory of cognitive development, which posits that children aged between 7 and 12 years are typically at the concrete operational stage (Piaget 1952). Although children at this age develop logical reasoning and a capacity to understand cause‐and‐effect relationships, their thinking remains anchored in concrete and observable realities. In the context of cancer, this developmental position means that children's understanding of care and suffering is mediated through tangible experiences—gestures, routines, bodily sensations and parental presence—rather than through abstract reasoning. It follows that their different modes of expression—verbal, gestural or silent—can be understood as concrete ways of giving meaning to their experience of illness and maintaining relational and emotional coherence within the family environment. This finding echoes the study by Kars et al. (2015), which demonstrated that parents caring for a child with incurable cancer at home often act as mediators of their child's voice, using both direct and indirect strategies to understand and represent their child's inner perspective (Kars et al. 2015). The same study, however, also revealed that parents' own struggle to cope with their child's impending death could hinder their ability to fully acknowledge and communicate the child's perspective, illustrating how the child's voice may be contingent on the parents' emotional availability and interpretive capacity.

Taken together, these two sub‐themes show that, from the child's point of view, the presence of parents and the expression of their own voice are inseparable. Conceptually, these findings extend child‐centred and family‐centred approaches in paediatric nursing by showing that the child's voice in HaH is not limited to explicit verbal participation or decision‐making.

Rather than simply reaffirming child‐centred or family‐centred care principles, our findings add conceptual precision to paediatric nursing knowledge in the context of HaH. They demonstrate that the child's voice cannot be reduced to explicit speech or formal participation. Rather, it arises as a relational, embodied and context‐dependent form of expression, conveyed through words, gestures, bodily signs, behaviours and silence that require interpretation within their situational context. In this respect, the child's voice should be understood not simply as something to be ‘heard’ but as something that must be clinically recognised and interpreted within the parent–child care relationship.

Our findings also refine current understandings of family‐centred care by suggesting that, in paediatric oncology HaH, parental presence is supportive and instrumental. In addition, this presence forms the basis of a care environment that is psychologically secure, temporally organised and meaningful for the child. In terms of nursing knowledge, this underscores the value of a more relational and interpretive understanding of paediatric oncology care at home, in which children's expressions, parental presence and the domestic care environment are viewed as dynamically intertwined. These interpretations should be understood, however, in relation to the French HaH context in which the study was conducted, where hospital‐level care at home is embedded in a specific organisational and socio‐cultural framework.

It is because parents are there that children can feel heard and exist. Conversely, the child's voice imbues the parental presence with a symbolic value, transforming it into a form of active support, a source of meaning and security. This observation is in line with an ecological and relational approach to care (Bronfenbrenner 1979), which states that the child's well‐being depends on the quality of everyday interactions that sustain their sense of continuity, belonging and security. Ultimately, these findings invite us to consider HaH not only as a medical alternative to hospitalisation, but also as a lived relational space in which the child seeks to preserve continuity, security and meaning in the face of cancer. In this sense, understanding the child's perspective entails recognising their capacity to shape the experience of cancer, to find stability in relationships and to remain a central figure in their own experience despite the medicalisation of everyday life.

4.1. Implications for Practice

Our findings highlight the importance of an approach to home‐based care that focuses on the child's experience and the quality of the relationship with their parents. In terms of clinical practice, these findings suggest that paediatric oncology nurses working in HaH should not assess the child's experience solely through direct verbal reports. Nursing assessment should also attend to embodied, behavioural and silent forms of expression, and consider how these are shaped by the child's relationship with their parents. Supporting care in HaH therefore extends beyond transferring technical tasks to families; it also requires nurses to sustain the relational conditions that help children feel secure, understood and able to participate in care in developmentally appropriate ways.

In practice, recognising the child's voice in HaH also requires attention to forms of expression that are not verbal or are only indirectly verbalised. For example, a child's silence, withdrawal, irritability, avoidance of eye contact, reduced engagement, change in tone of voice or increased proximity to a parent during care may signal discomfort, fear, fatigue or a need for reassurance. In situations such as these, nurses should not interpret silence as a lack of opinion or passive acceptance. Rather, these expressions call for gentle exploration, such as pausing the interaction, acknowledging what is being observed, inviting the child to express themselves in their own way and checking whether they would like the parent to remain closely involved. This may include using simple, age‐appropriate questions, allowing more time and working with parents to better understand how the child usually expresses distress, comfort or refusal.

Above all, they emphasise the need to listen to children's voices and grant them a real place in HaH. Recognising the child's voice in its many forms—words, gestures, attitudes and silence—is a major clinical challenge. This entails viewing children not simply as recipients of care, but also as active participants in the care relationship, capable of expressing their needs, emotions and expectations in their own way. Promoting this recognition requires time, openness and sensitivity from both healthcare professionals and parents (Lin et al. 2020).

Secondly, the diversity of forms of expression of the child's voice (verbal, gestural, body‐centred or silent) demonstrates the need for care teams to develop clinical sensitivity to these implicit modes of expression. Recognising and interpreting physical or behavioural cues as messages about the child's needs can help ensure that certain requests do not go unheard.

Thirdly, the results suggest that support for parent–child communication should be integrated into the HaH model. Helping parents interpret their child's voice, tolerate their emotions or silence, and adapt without attempting to exert complete control can promote essential emotional and psychological continuity. The results further indicate that preparation for HaH should begin prior to or at the start of home‐based care and should include more than practical instructions about treatment procedures. Parents may benefit from guidance about the relational and emotional dimensions of care at home, including how to recognise the child's different forms of expression, how to respond to distress or silence without exerting too much control, and how to maintain everyday routines that reinforce the child's sense of safety. Preparing parents in this way may help them feel more confident and emotionally available, while also supporting the child's participation and adjustment in the home setting.

This support should be conceived as a multidisciplinary effort rather than being the responsibility of parents alone. The present findings suggest that HaH follow‐up should involve coordinated attention from the multidisciplinary team to the child's modes of expression, the parent's emotional availability and the organisation of everyday care routines at home. In HaH, nurses can help families structure daily routines, anticipate difficult moments during home visits and identify behavioural or bodily signs suggesting that the child needs reassurance or a break. Psychologists can support parents experiencing anxiety, fatigue, helplessness or uncertainty, and help them think about how their own emotional state may affect their availability to the child. Physicians can also contribute by clarifying treatment expectations and reducing uncertainty around symptoms and care procedures.

For children, this coordinated support can help preserve a sense of predictability, emotional safety and continuity in the home environment. It may also help the care team identify difficulties at an early stage and anticipate when additional support for parents or children is needed during the course of HaH. Finally, these results encourage us to consider HaH not as a transfer of medical responsibilities to the family, but as a space for jointly developing the meaning of care, where parents, children and healthcare professionals work together to build a liveable and secure experience.

4.2. Strengths, Limitations and Research Directions

This study is one of only a few to explore the child's voice in relation to perceptions of home‐based cancer care and the relational dynamics that shape their experience of the illness. The IPA method enabled a detailed exploration of the subjective experience of children with cancer receiving care through HaH, providing access to their perspectives and lived meanings. Nevertheless, the study has some limitations regarding sampling and data collection.

The study was based on a small, relatively homogeneous sample of children in terms of age, socio‐economic background and care setting. Although this is consistent with the idiographic and depth‐oriented nature of IPA, it limits the transferability of the findings. Future research should draw on larger, more diverse samples to explore potential variations linked to age, gender, socio‐cultural background or type of cancer. In addition, the findings should be interpreted within the specific context of the study. All participants were recruited from the French healthcare system and from two relatively structured HaH organisations providing hospital‐level treatment, home visits and psychosocial support. This organisation of care may shape how children experience parental presence, professional support and the home as a site of treatment. In settings where home‐based paediatric oncology care is organised differently, offers fewer professional resources or places greater practical responsibility on families, children's experiences of care and their parents' roles may differ.

Cultural norms surrounding parenting, childhood and family involvement in illness may also have influenced the results. The importance attributed to parental presence in this study may partly reflect socio‐cultural expectations around parental availability, protection and emotional closeness in the context of childhood illness. For this reason, the transferability of these findings should be considered in relation to contexts that share similar assumptions about family roles, child participation and home‐based care. Rather than claiming broad generalisability, this study offers context‐specific insights that may be transferable to comparable paediatric oncology and HaH settings.

A further methodological consideration concerns the use of telephone interviews with children aged 7–12 years. This mode of data collection was chosen in response to families' preferences and helped make participation more acceptable in the HaH setting. Nevertheless, it may have influenced how children expressed themselves and how their accounts were accessed. In particular, the absence of visual and other non‐verbal cues may have limited the interviewer's ability to detect hesitation, discomfort, fatigue or emotional subtleties. It may additionally have reduced opportunities to support or deepen some children's narratives. At the same time, speaking by telephone from a familiar environment may have helped some children feel more at ease and less intimidated than in a face‐to‐face encounter. Although the interviews yielded rich material, it is possible that in‐person interviews—or the use of child‐adapted visual or creative material—might have generated different forms of expression or greater depth in some accounts.

Future research should include larger and more diverse samples to explore potential variations linked to age, gender, socio‐cultural background or type of cancer. Including children treated in different HaH models or healthcare systems would allow for cross‐cultural comparison and deepen our understanding of how local contexts shape a child's experience of care.

Data collection was based on single interviews conducted at a specific point in the child's treatment trajectory. Yet, the meaning of parental presence and communication strategies is likely to evolve throughout the course of the illness and across treatment phases. Longitudinal designs could provide valuable insight into how children's perceptions and modes of expression change over time, particularly during transitions between hospital, home, and remission.

While the children in this study spontaneously focused on their parents when describing their experience, other caregivers—such as grandparents, siblings or extended family members—may also play crucial roles in daily care and emotional support. Further studies could broaden the scope to include the wider family network to gain deeper insight into how different figures contribute to a child's sense of safety and relational continuity.

Finally, while this study privileged the child's perspective, future research would benefit from more extensive data triangulation. Combining the views of children, parents and healthcare professionals could enrich understanding of how the child's voice is heard, interpreted and integrated into daily care decision‐making. Such a multi‐perspective approach would also help identify the tensions and alignments between children's expectations, parental availability and healthcare constraints. In addition, methodological triangulation through the combination of interviews, observations of care interactions and, where appropriate, child‐adapted participatory tools could provide a more nuanced understanding of how children's expressions are recognised, negotiated and responded to in HaH. In overall terms, future research should aim to build integrative models of home‐based paediatric oncology care that explicitly include children as active participants, acknowledging their developmental stage, emotional needs and communicative capacities.

5. Conclusion

This study highlights how children with cancer experience HaH through two closely related dimensions: parental presence as a fundamental condition of care and the child's voice within the care relationship. Parental presence emerged as a central reference point that was not only material but also psychological and symbolic, sustaining care by providing emotional and temporal continuity in the face of cancer. Simultaneously, the child's voice—expressed through words, gestures, behaviour or silence—demonstrated their ability to actively participate in the care relationship, communicate their needs and maintain internal consistency despite their vulnerability. In this sense, the study contributes to paediatric nursing knowledge by conceptualising the child's voice in HaH as a relational and embodied phenomenon, and by showing that parental presence functions not only as a support but also as a core condition for care to be experienced as secure and meaningful. These different forms of expression reveal that children are not merely objects of care but are also capable of giving meaning to their experiences and building, together with their parents, a caring environment that is liveable and meaningful. HaH is a way of living for children with cancer: a space where the presence of their parents allows them to feel that they exist, and where their voice, in all its forms, becomes a means of remaining an active participant in this experience.

Author Contributions

Voskan Kirakosyan: conceptualisation, data curation, formal analysis, investigation, project administration, visualisation, writing (original draft). Caroline Miller: conceptualisation, visualisation, writing (review and editing). Adelin Maillard: conceptualisation, visualisation, writing (review and editing). Bastien Péré: conceptualisation, visualisation, writing (review and editing). Ingrid Chrétien: conceptualisation, visualisation, writing (review and editing). Marie‐Frédérique Bacqué: conceptualisation, formal analysis, visualisation, supervision, writing (review and editing).

Funding

This study was supported by Fondation Santé Service. No Grant Number is available.

Ethics Statement

The study received approval from the Research Ethics Committee of the University of Strasbourg under the number Unistra/CER/2024‐27. It has been included in the register of processing activities with the reference number 5580, confirming its compliance.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Data S1: COREQ (COnsolidated criteria for REporting Qualitative research) Checklist.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.