Parents’ Roles and Strategies for Caring for a Child With Cancer During Hospitalisation at Home: A Qualitative Study of Parenting Experiences

Introduction

According to the French National Cancer Institute, approximately 1,700 new cases of cancer are diagnosed in children under the age of 15 annually in France (Institut National du Cancer [INCa], 2024). Although therapeutic advances have significantly improved survival rates, paediatric cancer has major psychosocial impacts on the children affected by the illness (Lewandowska et al., 2021; McCaffrey, 2006; Tao et al., 2022). Cancer is also a deeply affecting experience for the entire family (Patterson et al., 2004), which is obliged to reorganise its daily life and relationships (Rolland, 2005).

Hospitalisation at home (HaH), which is increasingly offered to children with cancer, allows them to remain in a familiar environment while ensuring continuity of specialised care (Hansson et al., 2012). The HaH system denotes a model of care where medical treatment is provided in the patient’s home under conditions of equivalent safety and quality, and has proven to be both feasible and effective (Carter et al., 2014; Levine et al., 2021; McCann et al., 2012).

Although HaH has been increasingly promoted in several countries, its development remains highly heterogeneous, particularly in paediatric oncology. Models of HaH vary considerably across health systems in terms of eligibility criteria, resources, professional involvement, and the extent to which children with cancer are included (Fraser et al., 2020). While home-based care has been described in adult oncology, evidence focusing specifically on paediatric home hospitalisation for children with cancer remains limited and uneven across countries. In paediatric oncology and complex paediatric care, HaH has been described as feasible and acceptable in specific contexts, particularly when supported by specialised teams and adequate resources (Kassam et al., 2014; McCann et al., 2012).

This model also reduces prolonged hospital stays, which are often experienced as physically, psychologically and organisationally challenging (de Flon et al., 2021; Hansson et al., 2012). In many countries, HaH is typically the preferred option of children and parents since it provides the comfort of a familiar environment and the reassuring presence of family and friends (Carter et al., 2014; Kassam et al., 2014; McCann et al., 2012). In France, although paediatric home hospitalisation remains limited, its development has increased significantly, with an average annual growth of 8% between 2016 and 2020, now accounting for 4.7% of total HaH admissions (Baussant-Crenn et al., 2023).

A systematic review by Noyes et al. concluded that there is no universal preference for homecare. The authors noted that the choices are heterogeneous and evolving, and may depend on factors such as the quality of communication with professionals, confidence in hospital staff, the availability of care, the option of a home environment and the child’s wishes when they can express an opinion (Noyes et al., 2022). While HaH provides benefits in terms of quality of life, family proximity and reduced hospital time (Verberne et al., 2019), it also introduces a new complexity: the home becomes a hybrid space, both a place of living and a place of care. This requires parents to reorganise themselves materially, relationally and emotionally (de Flon et al., 2021; Kirakosyan & Bacqué, 2025). In addition, HaH disrupts everyday routines and redefines the role of parents (Kars et al., 2015).

The concept of parenting – defined as all the activities, care and skills exercised by adults who look after their children (Arendell, 1997) – is particularly appropriate. Many studies recognise the importance of the family, and parents in particular, in the daily care of children with cancer (Alsem et al., 2014; Smith et al., 2015).

Qualitative studies in paediatric oncology emphasise that the parental experience is based on a fragile balance between family continuity and the integration of medical care (Aasen et al., 2019; Kars et al., 2015). Yet, in the context of HaH, parental involvement can become even more intense. Several studies have shown that parenting in cases of chronic illness or disability embraces multiple roles: caregiver, mediator, protector and emotional resource (Kirakosyan et al., 2025; Lowes et al., 2005; Salomé et al., 2024). This research also highlights the cost of this intense parenting, characterised by exhaustion and the constant mobilisation of resources to manage the situation (Woodgate et al., 2015). During HaH, in addition to ordinary care and family responsibilities, parents must cope with expanded roles and constantly adapt to medical requirements (Coad et al., 2015; Hobson & Noyes, 2011). They also need to provide some of the often complex medical care on a daily basis. HaH can reconfigure parenting since it concentrates the demands of care and the needs of the child with cancer, their siblings and the broader family within the same space and time.

Research on parenting in paediatric oncology, however, does not take into account how parents actively redefine their roles and employ strategies in a medicalised home environment. The aim of this study, therefore, is to explore how parents of children with cancer receiving homecare redefine parenting. More specifically, this article seeks to analyse the parental roles and strategies deployed in this context, highlighting the adjustments, tensions and resources that shape the parenting experience.

Method

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 hospitalised at home.

Data Collection

The interviews started with the parents providing background information (such as age, family composition, cancer diagnosis, and how long their child had been hospitalised at home) 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.

A semi-structured research interview was conducted by the researcher (first author) on a one-to-one basis. A single interview guide was developed to provide a common framework for all participants, inviting interviewees to describe their experience (see Box 1). The guide was based on the existing literature and prior clinical observations. Rephrasing and prompts were used during the interviews, where necessary, to elicit further information and clarify responses.

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Box 1.

Interview Framework.

Interview domain	Question
The parental experience of cancer	“Can you share what your experience has been like since your child’s cancer diagnosis?”
The experience and perception of HaH	“How did you experience the transition from hospital to home-based care?”
The care provided to the child with cancer	“Can you describe your child’s daily care routine at home?”
The child’s reactions to parental care	“How does your child react to care provided at home by you or by healthcare professionals?”
The parents’ role	“How would you describe your role as a parent since your child has been hospitalised at home?”
The parents’ strategies	“What helps you cope on a daily basis in this situation?”

Each interview was recorded with the consent of the participant and transcribed in full by the researcher. Each participant’s file was coded to ensure confidentiality, and all first names were changed to ensure anonymity. The interviews lasted between 30 and 90 min, with a mean duration of approximately 59 min. Field notes were made after the interviews. Data collection was guided by the principle of information power, whereby the adequacy of the sample was assessed based on the relevance, richness, and diversity of the parental experiences in relation to the study aim (Malterud et al., 2016). Interviews were conducted until sufficient variation and depth were achieved to allow an in-depth interpretive analysis of parenting in the context of hospitalisation at home.

Results

Presentation of Participants

Twenty-seven participants (9 men and 18 women) were interviewed. In nine families, both parents wanted to participate. All other interviews were individual. Participants’ average age was 46.5 years (range = 37–56 years). The parents had a child with cancer hospitalised at home. The socio-demographic characteristics and type of illness of our sample are shown in Table 1.

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Table 1.

Socio-Demographic Characteristics.

	Parents (n = 27)
Age (mean and range)	46.5 years (range: 37–56)
Sex
Mother	18
Father	9
Marital status
Married	19
Cohabiting	8
Employment status
Employed	8
Unemployed/not working	19
Siblings living in the household
Yes	22
No	5
Child’s diagnosis
Sarcoma	7
Lymphoma	6
Leukaemia	7
Brain tumour	5
Bone tumour	2
Time since diagnosis
0–3 months	8
4–6 months	9
7–10 months	10
Length of time in HaH at time of interview
0–3 months	11
4–6 months	8
7–10 months	8

Reflexive Thematic Analysis

HaH required a reorganisation: it allowed the child with cancer to return to the family environment while accommodating cancer and care. This was not a simple transition, but a situation that required parents to actively renegotiate parenting by redefining their roles in order to maintain a certain degree of “normality” and to cope with the illness and medical equipment in the home. The analysis identified four central main themes that together structure parents’ experiences of parenting in the context of HaH that include (a) adapting to a new care dynamic; (b) sharing parenting with healthcare teams; (c) taking on multiple parental roles; and (d) developing parenting strategies. These themes were developed through an iterative analytic process that sought to clarify the hierarchical relationships between themes and subthemes, rather than to present them as isolated or equivalent categories. Each theme captures a distinct aspect of the parenting experience, while the subthemes specify how these experiences are enacted and negotiated in everyday family life. The themes are presented in a logical sequence that reflects how parents first encounter and adapt to home-based care, then position themselves in relation to healthcare teams, before taking on multiple parental roles and developing strategies to sustain parenting over time. This organisation aims to provide a coherent analytic narrative that reflects the progressive and interconnected nature of parenting in hospitalisation at home.

Table 2 shows how each theme was developed from organising subthemes within the data. These four themes reflect different analytical levels of parenting in HaH: the first two describe the contextual and relational conditions of parenting, while the latter two focus on how parenting is enacted through roles and sustained over time through strategies. More specifically, the first two themes refer to the contextual framework of parenting in HaH, shaped by the medicalisation of the home and by ongoing interactions with health care professionals, which together constitute the conditions within which parenting is reorganised. Parental roles refer to the functions parents assume and embody in everyday life, while strategies describe the ways parents regulate, sustain, and adapt these roles over time in order to cope with the cumulative demands of HaH.

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Table 2.

Themes and Subthemes.

Theme	Subtheme
Adapting to a new care dynamic	Moving care to the home
	Home transformation
	Emotional adjustment to the medicalisation of the home
Collaborate with the healthcare team and negotiate responsibilities	Active collaboration
	Negotiate responsibilities
Parental roles	Emotional parent
	Caregiver
	Mediator
	Guarantor of family balance
	Guardian of the child with cancer
	Parent for siblings
	Leader/coordinator
Parenting strategies	Marital support
	Anticipation and control strategy
	Self-preservation
	Selective distance

Figure 1 presents the structural organisation of parenting in the context of HaH as a dynamic and processual configuration. It illustrates how the contextual conditions of HaH – namely the medicalisation of the home and shared parenting with health care teams – constitute the framework within which multiple parental roles are enacted and sustained over time through the deployment of specific parenting strategies.

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Figure 1.

Parenting in HaH as a dynamic and processual configuration.

Adapting to a New Care Dynamic

Moving care to the home: While care was previously delivered in the defined setting of a traditional hospital under the responsibility of health care professionals, it has now become part of the home environment, transforming parents’ reference points in the organisation of family life. Parents must integrate care into their daily lives and family environment:

What changes in daily life are the equipment and medicines that arrive at home. All these small changes add up and reveal the reality of the situation, and we have to adapt to all of that (mother, 38 years old).

Home transformation: Small changes in everyday routines, such as moving medical equipment around, gradually transformed the home into a place of care. Parents had to make this environment their own, while adapting the home to safety and hygiene requirements:

We have to organise the room, for example, to make space and maintain hygiene. I have to dust every day (mother, 43).

As this mother explained, adapting to the new care dynamic required a reconfiguration of the living space, which the parents had to transform to accommodate the demands of care, while trying to preserve their family character. This process of adjustment, which is often invisible, led parents to question themselves:

We had to rearrange everything in the house. The bedroom became almost like a hospital room, with IVs and equipment. But we tried to keep her things, her toys, so that she would still feel like it was her room (mother, 36).

Emotional adjustment to the home medicalisation: In addition to acquiring these new technical skills, parents were also called on to adapt emotionally to a new reality, learning to live with the disease on a daily basis in the very heart of their private space. This constant capacity to adjust shows that adapting does not only mean learning new tasks, but also coming to terms with an unsettling situation:

There is some apprehension when you see these machines in your home, transforming your daily life and your living space. But you quickly get used to it, I would say, you get accustomed to it (father, 39).

This reorganisation forced parents to rapidly adjust to a daily routine punctuated by medical care, team interventions and technical protocols. The home thus became a hybrid space, both a place of everyday life and a place of care. This adjustment to home-based care was a gradual process, with parents eventually integrating the presence of care into their daily lives to the point where it became a new form of normality.

Collaborate With the Health Care Team

Active collaboration: HaH required a more horizontal way of cohabiting with health care teams, with parents engaging in a form of collaboration with the health care team where each member played a decisive role:

When the teams arrive, I let them get on with it and wait patiently for them to give my daughter the necessary treatment. I just stand there and watch (mother, 40).

This experience showed that collaborating with health care professionals sometimes required parents to accept taking a back seat during treatment, while remaining attentive and available for their child. Some parents managed to negotiate a balanced position during HaH: being there for their child without hindering the technical procedures.

Negotiate responsibilities: Other parents, by contrast, preferred to withdraw entirely and let the health care teams take over:

I’m there at the beginning to provide a maternal and reassuring presence, and when I see that she’s comfortable with the nurse, I leave the room, but I don’t go very far, so that if they need me, I’m there (mother, 54).

This account underscored how important it was for this mother to be present at the beginning to reassure her child by providing emotional support, before gradually withdrawing when trust had been established between the child and the health care professional. The parent remained available but took a step back. Withdrawal does not mean giving up the parental role or relinquishing one’s place, but it does require subtle negotiation that recognises the competence of professionals while retaining parental responsibility by adjusting one’s presence and involvement. This cohabitation of roles required parents to be highly flexible in the way they exercised their authority, autonomy and availability in order to remain present without feeling dispossessed of their parenting.

Parental Roles

Returning home required parents to take on several roles, including maintaining emotional support for their child while simultaneously performing technical, relational and organisational tasks. These roles were not mutually exclusive: they coexisted and complemented each other, demanding constant adjustments as parents switched between roles depending on the situation and specific requirements.

Emotional parent: Emotional presence has always been central to parenting – reassuring, supporting, listening and distracting. All the parents in the study explained how they fulfilled their fundamental role: to be parents first and foremost, continuing to give love, comfort and emotional support to their child:

We try to do normal things, watch a film, play cards, even if sometimes we have to stop for treatment. It’s important that he remains a child above all else, and as his mother, I have to give him that impression (mother, 39).

By protecting the child’s identity as a child, this mother was able to preserve her own identity as a parent. Love and reassurance were not secondary to care: they were the framework for it and structured parenting. Even when children had cancer, they remained children and needed their parents.

Caregiver: Parents gradually took on a caregiving role that obliged them to perform technical procedures and actively participate in care in the absence of the health care teams:

At first, changing the dressing was very difficult. I was afraid of doing it wrong, afraid of hurting him. But then, with the nurses’ explanations and after doing it several times, it became more natural. Now, it’s a moment when I can show him that I’m there for him, even in these small acts (father, 45).

This situation required parents to accept the idea that technical and medical care were now part of their role, just like feeding and protecting their child. Gradually, these medical procedures, initially perceived as alien, became part of their day-to-day routine and helped redefine their identity as parents.

Mediator: Parents frequently became mediators on several levels between the child and the teams, summarising daily observations and passing on useful information:

When the team arrives, we give them an update. We tell them whether he’s eaten and slept or if he’s in pain anywhere. It’s important for them to know how he is really doing (mother, 38).

This mother, like most of the other parents, explained the importance of relaying all relevant information to the team. This communication role was essential to ensuring continuity and adaptation of homecare. The role of mediator demanded that parents be highly vigilant and observant while being constantly involved in order to ensure continuity of care in the absence of the teams. This function strengthened parents’ sense of responsibility and made their position more complex. They evolved into their child’s spokesperson.

Guarantor of family balance: Despite the care required, the parents endeavoured to maintain continuity in home life and preserve a stable and predictable environment for the entire family. This preservation function was not insignificant: it aimed to limit the disruptive effects of the child’s illness by maintaining familiar landmarks and rituals. These efforts took concrete forms, such as preparing meals and keeping the house clean:

I try to do everything I can to keep the house running as it did before . . . to keep things going, to keep it clean, so we can all have dinner together. That’s my way of maintaining normality (mother, 48).

This role as “guardian of normality” and family balance helped protect family life, supporting its cohesion and cushioning the intrusion of the illness and medical care.

Guardian of the child with cancer: To ensure the safety and well-being of their child, parents took on the role of guardian, which consisted of supervising and protecting their child and monitoring their health:

I wake up during the night to check if my child is sleeping, if he’s okay, if he’s breathing normally. I did a lot during his illness when we were in hospital, and I’m still doing a lot now. I think we develop a kind of anxiety about looking after our child, who needs us even more. That’s it, we’re scared. I wake up at night to check on my child (mother, 51).

In common with other parents, this mother explained that she remained vigilant (waking up at night, checking her child’s breathing and regularly monitoring his condition), which kept her on high alert. This hypervigilance was based on repeated micro-decisions (getting up, checking and reassessing) aimed at detecting any worrying signs or health problems. The resulting anxiety was costly: sleep deprivation and constant tension. But the anxiety was also functional: it mobilised control and constant presence, which reassured the parents. The role of guardian was thus carefully balanced between the need to protect the child by remaining alert and the psychological and physical strain imposed by this constant vigilance.

Parent for siblings: Parents had to manage a frequent tension: staying present for the sick child while making themselves available for their other children. This balancing act meant dividing their attention, dealing with feelings of guilt and ensuring that siblings did not feel neglected:

We mustn’t forget that I also have another son, who is also a child and needs us. So, now that my daughter is at home, we can also spend time with my son and feel less guilty (father, 55).

Parents coped by dividing their attention and giving time to each child. Some parents set aside specific moments for siblings, while others try to include them in the medical routine in a reassuring manner. Yet all emphasised the burden of this dual requirement: supporting the sick child without making the others feel left out. This role, often overshadowed by medical emergencies, was nevertheless an essential pillar of family balance.

Leader/coordinator: Some parents described a less visible but central responsibility: orchestrating all aspects of family and medical life. This role of leader or coordinator consisted of holding the various elements of daily life together: medication schedules, nursing visits, medical appointments, organising the home, schooling for the sick child, the needs of siblings and domestic tasks:

I’m the one who writes everything down: treatment times, when the nurses are due to visit, hospital appointments . . . I make sure everything runs smoothly and on time. And then there’s my son’s and daughter’s schoolwork to think about, helping them with their homework. Sometimes I feel like I’m the control tower of the house (mother, 47).

Taking on this “control tower” role not only helped bring consistency to a family life disrupted by illness but also prevented day-to-day life from falling into disarray. The role of coordinator ensured continuity and coordination between care, domestic life and everyone’s needs. But it also highlighted the organisational and mental burden that adds to the emotional and technical demands.

In the context of HaH, parenting referred to a mosaic of evolving and fragmented roles that were continuously adjusted over time, with parents evolving into true “orchestral conductors.” This plurality of roles, often invisible to professionals or those around them, demonstrated the complexity of parenthood, which also has its limits. It required parents to manage their own vulnerability by developing appropriate strategies.

Parenting Strategies

In contrast to parental roles, which refer to what parents do and what they represent, parenting strategies describe how they managed to persevere, adjust and cope over time. These strategies were developed across several areas, enabling parents to balance the emotional, organisational and medical burdens.

Marital support: The parents developed a system of marital support aimed at sharing responsibilities and easing the emotional burden. This mutual support assumed several forms – including organisational, emotional and decision-making – and enabled parents to take turns and maintain continuity:

He knows when I can’t take it anymore, he takes over without me even saying anything. We’ve become complementary in what we do, we help each other, we support each other and we try to move forward (mother, 39).

Some parents spoke of “teamwork,” where each partner took on what the other was temporarily unable to do. This complementarity strengthened the sense of parental competence and helped preserve the couple’s cohesion.

Anticipation and control strategy: Parents developed strategies for anticipating, planning and controlling each stage of the day to reduce the unexpected. They kept diaries, schedules and phone alarms so they would not forget anything and could maintain a sense of control in their daily lives:

I write everything down: medication, appointments, visiting hours. I set alarms on my mobile phone so I don’t forget anything. It reassures me; it makes me feel like I’m in control (father, 46).

This strategy reflected a need to control an uncertain environment. It helped reduce anxiety by organising daily life around a stable framework, and it helped parents feel empowered rather than overwhelmed.

Self-preservation: In a daily life marked by illness, some parents allowed themselves short breaks to keep going: a few minutes alone, for example, or taking a walk. These activities were rarely thought of as “me time,” but as a necessary condition for remaining available for their child:

When she’s asleep, I take five minutes to relax and drink a cup of coffee in silence. It may not seem like much, but without it, I wouldn’t be able to cope (mother, 41).

This strategy reflected the need to set aside time for recovery, however minimal, in order to maintain a presence for the child. It highlighted the fragile balance between giving everything and sustaining effort over time, revealing the importance of micro-resources in parenting in HaH.

Selective distance: To protect themselves and preserve family harmony, some parents choose to distance themselves from anything that might heighten emotional stress or disrupt daily life. This strategy applied in particular to visits, requests from friends and family, and certain medical information deemed too difficult to deal with:

When we had HaH, everyone wanted to come over, but we couldn’t. I had to say no to some people, otherwise my daughter would have been exhausted, and so would I (mother, 42).

I try to put certain medical information out of my mind and not think about it. Otherwise, our minds become cluttered and we have no mental space left (father, 59).

This distancing was not an emotional withdrawal, but a way for parents to protect themselves from relational and emotional overload. By filtering what entered the home – words, presences or outside emotions – the parents built a kind of buffer zone that allowed them to maintain a certain amount of control and prevent the illness from spilling over into every aspect of family life.

Negotiating personal distress: Parents were confronted with their own physical, emotional and psychological limits. However, this aspect often remained unspoken, masked by the need to be available, effective and reassuring for their child and other family members. Negotiating their own vulnerability thus became a central challenge of parenting at home:

I cry when he’s asleep. In front of him, you have to be there, strong (mother, 37).

I can’t break down, because if I break down, things won’t work out. You have to hold on for him, for the others. Even when you can’t take it anymore (father, 47).

Although this internalised vulnerability sometimes manifested itself, it was often contained and controlled, as if acknowledging distress might threaten the parent’s own stability and the already-fragile stability of the family. In order to continue parenting, parents had to negotiate their distress. As a result, the home – which had become a place of care rather than a place for living – rarely allowed parents to have any space of their own. The absence of boundaries between the private and the medical made it more difficult to withdraw and take a step back.

Discussion

The aim of this study has been to explore how parents of children with cancer receiving homecare redefine parenting. The analysis has highlighted four central themes: (a) adapting to a new care dynamic; (b) sharing parenting with health care teams; (c) taking on multiple parental roles (emotional parent, caregiver, mediator, guarantor of family balance, guardian of the child with cancer, parent for siblings, and leader/coordinator); and (d) developing parenting strategies (marital support, anticipation and control strategy, self-preservation, selective distancing and negotiating personal distress). A central contribution of this study is to highlight the specific features of parenting within a formal hospitalisation at home (HaH) model, beyond home-based care in a more general sense. In HaH, the home becomes an institutionally organised site of care, structured by clinical protocols, scheduled professional interventions, and safety requirements, which parents must integrate into everyday family life. This hybridisation of the domestic space creates distinctive expectations for parents, who are required not only to provide care but also to coordinate with HaH teams, negotiate their presence during medical procedures, and ensure continuity between hospital-level care and family routines. By documenting these dynamics, our findings extend existing literature on parental caregiving in paediatric oncology by showing how HaH produces a specific configuration of parenting shaped by the continuous co-presence of institutional care within the home.

Our findings confirm that HaH is not limited to a simple transfer of care from hospital to home. It involves a profound transformation of the domestic space, which becomes a hybrid place where family intimacy and medical constraints overlap. Parents must rearrange this space, integrate medical equipment and devise new routines while seeking to preserve the familiar character of the home. This medicalisation of the private sphere has been described in other contexts, such as chronic paediatric illness (Knapp et al., 2010) or adult oncology (Auret et al., 2015), where care and support involve a profound reorganisation of daily life. However, our findings suggest that HaH forces parents to navigate simultaneously between family continuity and medical requirements, confirming the observations of the home as a “buffer zone” between normality and medical hospitality (Verberne et al., 2019). Our research also highlights that this adaptation is not merely logistical; it constitutes a genuine emotional endeavour, requiring individuals to come to terms with the daily visibility of the illness and medical equipment, which is described as an affective integration of the illness into the heart of family life (Kars et al., 2015). This dual nature of the space (both intimate and medicalised) not only transforms the physical environment but also creates a unique setting that distinguishes HaH from other forms of care, transforming the way parents parent.

Our study also shows that HaH is defined by cohabitation with health care teams and the relationship with health care professionals. Within the formal HaH model, collaboration with the health care team emerges as a central component of parenting, structured through active collaboration during care delivery and ongoing negotiation of responsibilities between parents and professionals within the home. This position is consistent with the findings of previous research on the co-construction of parental presence in care (Angelhoff et al., 2015; Kirakosyan et al., 2025), yet it underscores one specific feature: the repeated intrusion of carers into the home forces parents to constantly adjust their position so as not to feel deprived of their parental authority. Within the formal HaH model, collaboration with the health care team emerges as a central component of parenting, structured through active collaboration during care delivery and ongoing negotiation of responsibilities between parents and professionals within the home. This phenomenon is also observed in other contexts, such as among fathers of children with complex needs (Hobson & Noyes, 2011). However, HaH makes it particularly visible, as the boundary between the personal and the medical overlaps. Furthermore, the balance depends not only on mutual trust and recognition but also on the parents’ ability to adjust their presence and authority. This collaborative work does not imply a loss of parental responsibility but rather requires parents to continuously adjust their involvement, presence, and authority in response to professional interventions, highlighting collaboration as a situated and dynamic process specific to HaH.

These findings should also be interpreted in light of the specific characteristics of the French health care system and the organisation of hospitalisation at home. In France, HaH is embedded within a publicly regulated health care system, where care is predominantly financed by national health insurance and delivered through specialised, physician-led teams. This institutional framework shapes parents’ experiences by formalising expectations regarding safety, availability, and coordination of care within the home, while simultaneously reinforcing parents’ responsibility for day-to-day organisation and vigilance. In addition, cultural understandings of parenting in the French context, which strongly value parental presence, protection, and involvement in children’s care, may further intensify parents’ engagement in HaH. The combination of institutional regulation and culturally grounded expectations of parental responsibility provides a specific context within which parenting is reconfigured, and should be considered when interpreting the transferability of these findings to other health care systems or cultural settings.

One of the major contributions of this research is that it demonstrates the breadth and diversity of parental roles in an HaH context. This plurality has already been described in the literature on disability (Geuze et al., 2023) and paediatric diabetes (Nieuwesteeg et al., 2017), where parenting unfolds through technical, educational and emotional functions. Our study adds two major contributions. First, it highlights the role of the parent as the guarantor of family balance, aiming to maintain reference points and normality in the face of disorganisation. Second, our research identifies the role of pilot/coordinator, which centralises organisational and logistical responsibilities, making parents the true “control tower” of domestic and medical life. While the literature has already emphasised the concept of “extended parenthood” (Aasen et al., 2019) and the “dual identity” of parents who have become quasi-professionals, we go a stage further by showing that this identity is multiple, fragmented and constantly readjusted. Our findings confirm and extend the concept of “intensive parenting” (Woodgate et al., 2015), which is characterised by exhaustion, constant resource mobilisation, considerable cognitive and emotional strain and the permanent coexistence of family life and caregiving. The originality of HaH lies in the fact that these roles must coexist in the same space and at the same time, without the possibility of compartmentalisation. As a result, the burden of care increases greatly as responsibilities extend beyond the usual boundaries (Page et al., 2020). Our findings invite a wider understanding of parental roles in home hospitalisation, emphasising their orchestral nature: parents become true “conductors” of family and medical life.

Finally, the parenting strategies observed demonstrate creativity in terms of “holding out” over time. Mutual support between spouses (Li et al., 2018) and organisational anticipation (Hobson & Noyes, 2011) appear to be major resources. But our study also shows the importance of more discreet strategies: self-preservation through micro-spaces of respite; selective distancing by filtering out emotional and relational intrusions; and silent negotiation of distress, that is, privately managing one’s own vulnerability, which is essential in order not to undermine family stability. These results confirm the importance of intimate and invisible adjustments, which are often absent from more technical descriptions of parenting in a medical context. They highlight that HaH parenting is not only an organisational feat or a combination of roles, but also active daily work to regulate emotions, protect the child and safeguard the family. Recognising this specificity is essential in order to adapt support practices and assist these parents, who are the “conductors” of a family life transformed by illness.

Implications and Potential Future Research

The results of this study have several implications for clinical practice and research. Clinically, they highlight the importance of education, preparation, and sustained professional support for families who assume intensive care responsibilities in hospitalisation at home. Beyond recognising the complexity of parenting in this context, the findings emphasise the central role of nurses and other HaH professionals in preparing parents for home-based care. This preparation extends beyond technical training to include anticipatory guidance regarding organisational demands, emotional challenges, and the coordination required to manage multiple parental roles within the home. Professionals are also uniquely positioned to provide ongoing support, help parents adjust their involvement over time, and identify early signs of vulnerability, overload, or exhaustion – such as sleep disruption or anxious hypervigilance – allowing timely adaptation of support. Structured educational interventions, regular opportunities for dialogue, and explicit recognition of parents’ organisational and emotional labour may help sustain parenting capacities while preserving family balance in HaH.

Beyond clinical implications, these findings open avenues for future research. Longitudinal studies would enable examination of how parental roles and strategies evolve over time and across different phases of illness, including curative and palliative trajectories. Comparative research across care contexts (oncology, chronic illness, disability, and technological dependence) could further clarify which aspects of parenting experiences are specific to formal HaH arrangements and which reflect broader processes of caregiving at home. Finally, integrating mixed methods approaches – combining qualitative analyses with quantitative measures of parental burden, sleep, anxiety, and quality of life – would deepen understanding of how parents regulate and sustain their caregiving roles over time.

Limitations of the Study

This research has several limitations. First, the most vulnerable or least available families were probably underrepresented, which may introduce selection bias. The experiences of these families could reveal other facets of HaH parenting. Our sample consisted of French parents, and we were unable to survey other cultural contexts that might reveal cross-cultural differences. Second, the study was conducted in a specific context: HaH in paediatric oncology in France. The results cannot be directly generalised to other chronic conditions or other cultural or organisational contexts where home hospitalisation arrangements, resource availability or relationships with carers may differ. Furthermore, the research does not take into account the perspectives of all family members. It focuses on parents, yet the experiences of the sick children themselves and their siblings should also be studied in order to complement and add nuance to our understanding of parental dynamics.

Conclusion

Home hospitalisation transforms parenting into a demanding experience, where parents must integrate medical care into their private space and simultaneously preserve family continuity despite illness. Four themes structure this experience, which functions as an ongoing process: adapting to a new care dynamic; sharing parenting with health care teams; assuming multiple roles; and devising strategies for coping over time. Parents are no longer seen merely as carers, but as actors involved in the organisational, medical, emotional and symbolic aspects of parenting in HaH. They devote all their energy to maintaining family life in spite of the intrusion of homecare. Home health care condenses and intensifies parenting in the same space and time, revealing parental creativity, adaptability and vulnerability.