1A growing number of critically ill and severely disabled children are able to survive thanks to medical, technological and scientific advances in recent decades (Mantler et al., 2022). However, the consequences for families are often protracted because their children live longer. In fact, more and more children are leaving pediatric medical care and transitioning to adult care. Studies show that the daily lives of families with a child who has a life-threatening or life-limiting illness are impacted in various ways. Some studies highlight the consequences of reorganizing family roles, financial insecurity, psychological distress of parents, spousal tensions (Dewan et al., 2013; Anderson et al., 2011; Champagne et al., 2014) and the erosion of social ties (Edelstein et al., 2017). The mental health of siblings also appears to be compromised (Mooney-Doyle et al., 2022). The socio-political context of childhood illness and its consequences compounds the challenges these families face as they struggle to obtain the help and support they need. To make matters worse, it is difficult for society to accept that children die because palliative care is not always accessible. Hence the relevance of this article, which demystifies this field of pediatric medicine.

2The article will define the concept of pediatric palliative care (PPC) and identify the population most likely to benefit from it. It will then determine the incidence of PPC, and describe the experiences of the families and caregivers of children in PPC. The conclusion will discuss the main points and briefly introduce the articles collected in this thematic issue.

What are the definitions/specifics of pediatric palliative care?

3In order to provide critically ill children and their families with the best possible quality of care, many are admitted to the services of pediatric palliative care (PPC). This approach to care is defined as:

“active and comprehensive care, encompassing physical, psychological, social and spiritual dimensions. The goal is to help the child maintain a quality of life and provide support to their family, including relief of the child's symptoms, respite services for the family, and care until the time of death and during the bereavement period. The bereavement follow-up is part of palliative care, regardless of cause of death, which includes trauma and loss in the perinatal period” (Groupe de travail sur les normes en matière de soins palliatifs pédiatriques, 2006 :17).

4Palliative care is appropriate at any stage of a life-threatening illness or condition, and can complement curative care. As illustrated in Figure 1 below, a distinction should be made between curative and palliative care: the latter should be available as soon as a diagnosis is given. The early integration of palliative care helps to better support a child with a life-threatening illness, as well as their family and loved ones. In some instances, palliative care is the only care being provided; the palliative phase may last for years and even overlap between childhood and adulthood. PPC includes but is not limited to end-of-life care.

5The goal of PPC is to alleviate the suffering of the child and to optimize their quality of life. PPC also aims to provide help, support and respite to family members. PPC integrates comprehensive and holistic care throughout the life of the child, at the time of death and throughout the bereavement process of the family and loved ones. PPC is delivered by an interprofessional team composed of professionals from different disciplines (e.g. doctor, nurse, psychologist, social worker). A definition of palliative care recently proposed by the International Association of Hospice and Palliative Care (International Association Hospice and Palliative Care, 2018) goes one step further by aiming to improve the quality of life not only for the child, but also for their families and caregivers.

Who are the recipients of pediatric palliative care?

6PPC targets five groups of children and one group of bereaved parents (Groupe de travail sur les normes en matière de soins palliatifs pédiatriques, 2006 ; Craig et al., 2008):

1. Children with a disease that can lead to premature death and whose prolonged intensive treatment may fail (e.g. cancer, heart disease, kidney disease);

2. Children whose illness inevitably leads to premature death (e.g. cystic fibrosis, muscular dystrophy). These children may require long periods of intensive treatment to prolong their lives and allow them to participate in normal activities;

3. Children with a progressive disease without hope of recovery (e.g. Batten's disease, mucopolysaccharidosis). The treatments are palliative and can extend over several years;

4. Children with a non-progressive disease (e.g. accidents with neurological disorders, severe cerebral palsy) that increases their vulnerability and the risk of unforeseeable complications with severe deterioration of their condition;

5. Newborns with limited life expectancy;

6. Family members who have suddenly lost a child due to illness, accident or during the perinatal period. These families receive support during the bereavement period, a key component of PPC.

7In Europe, PPC definitions were published in 2007 in a reference document titled International Meeting for Palliative Care in Children Trento (IMPaCCT) (Craig et al., 2008), which was updated by the Global Overview-Pediatric Palliative Care Standards (GO-PACCS) specifying the conceptual, organizational and educational methods for PPC (Benini et al., 2022). The National Institute for Health and Care Excellence (NICE, 2019) also proposes practical guidelines that support the clinical work of PPC teams (National Institute for Health and Care Excellence, 2017), specifying the methods for identifying children with palliative needs, symptom management, psychosocial family support, early planning of care and bereavement support. Song et al. (2021) propose a tool to identify more quickly children who require palliative care.

8To date, no study has determined the number of Canadian or Quebec children and adolescents with a life-limiting or life-threatening condition. However, Fraser et al. (2021) estimate that in England, in 2017-2018, 66.4 out of 10,000 children had a potentially fatal disease, and they expect an uptick of between 67.0 and 84.2 per 10,000 children in 2030. Extrapolation of these data suggests that Quebec could have between 12,459 and 15,657 children who will have a life-limiting or life-threatening condition in 2030 and who will be eligible for PPC (Statistique Canada, 2022).

How pediatric palliative care is organized?

9Pediatric care involves numerous ethical and organizational issues not only because of the heterogeneity of diseases and the age groups concerned, but also because of the emotional impact that the severe illness and death of children carries in modern societies. As a relatively new discipline, PPC is still largely confined to the end-of-life phase, is poorly documented in scientific publications and its impact has been only partially assessed (Friedel, 2019). International recommendations (World Health Assembly, 2014) aim to integrate PPC into existing care systems, rather than isolate it for end-of-life care only.

10Three levels outline the degree of specialization of palliative care skills, offerings and services: 1) Community-based palliative care through general practitioners or a community-based medical home where care is provided by an interprofessional team; 2) general palliative care, for example, in pediatric hospital units; and 3) specialized palliative care through teams exclusively dedicated to PPC (Friedel, 2020). There are no clear descriptions, explanations or assessments of organization models for PPC (Virdun, 2015; Harding, 2017), which would make it possible to understand how these three levels relate to one another. Nonetheless, many forms of palliative care are observed in various settings and countries; they are briefly described below (Kaye, 2015):

1. PPC: Interdisciplinary services that meet the needs of children, adolescents and young adults with life-limiting/life-threatening conditions and also support their parents. Treatment is designed to relieve physical, psychosocial and/or spiritual suffering. The purpose is to improve the child’s quality of life, to support the family through illness and grief, and to facilitate decision-making and help coordinate care (Feudtner, 2013).

2. Community-based PPC: Out-of-hospital care offering resources and services in private facilities, primary health care facilities and respite facilities. Such care can be managed through homecare, attending physicians, or by providing support via telephone or email. These programs provide continuity of care for children who transition between in-hospital and out-of-hospital care, thereby improving their quality of life across a continuum of care (Meyers, 2014).

3. End-of-life hospice care: This involves institutions offering end-of-life care. They provide medical, psycho-social, spiritual and volunteer services, as well as long-term medical equipment, and diagnostic and therapeutic interventions that align with the child's and family's care goals. These services are usually funded by an all-inclusive daily package and can be offered either at home or in a separate hospice structure (Feudtner, 2013).

11The concept of a continuum of care for palliative care was emphasized by the World Health Assembly in January 2014 (World Health Assembly, 2014), as well as by the Belgian Chamber of Representatives, for example, in its law of 2016 (Service public fédéral, 2016) when it expanded the concept of palliative care beyond end-of-life care.

Experience of palliative care

12Many factors impact the experience of a child’s illness; each experience is unique for the child, their parents, their siblings and their relatives.

Sick children

13Most studies on the experiences of critically ill children document them through the perspective of their parents or members of their care teams (Ciobanu et Preston, 2021). The ability of children with life-limiting illnesses to participate in discussions about their health varies, depending on their age, their stage of development, the psychological and cognitive factors related to their condition and the behaviour of the adults around them (Gilmer et al., 2013). Nevertheless, parents are often the ones who make decisions on behalf of the child (Mitchell et al., 2020). The decisions parents face are often challenging, sometimes complex, and can be numerous and vary in nature (Chénard et Trevisan, 2022).

Parents 

14In a systematic review, Mitchell et al. (2020) identify different studies that demonstrate the ability of parents to adapt and, over time, become experts in administering care and managing the impact of their child’s illness on the family life.

15Studies show that living with a child with a complex medical condition that reduces life expectancy has a significant impact on the lives of families, particularly those who provide demanding and ongoing care at home (Perrin et al., 2014). The child’s illness forces the reorganization of roles within the family (Cohen et al., 2018) to the point of altering the identity of the parent who feels most challenged by the role of advocate and caregiver (Teicher et al., 2022). The situation also generates financial stress (Anderson et al., 2011) when one spouse suspends their professional activities to assume their role as a full-time caregiver (Yu et al., 2022), and this contributes to the breakdown of the family’s social ties (Teicher et al., 2022; Champagne et al., 2014; Kirk et al., 2005). Researchers point out that there are often conflicts between the parental couple and that parents experience a high level of psychological distress (Verma et al., 2020; Dewan et Cohen, 2013; Anderson et Davis, 2011) – distress that was further exacerbated by the complications of the Covid-19 pandemic (Charton et al., 2022). A couple’s conversations revolve intensively around the needs of their (Teicher et al., 2022).

16Studies, mostly conducted with mothers, also show the impacts on parents’ physical and mental health (Yu et al., 2022; Teicher et al., 2022; Bayer et al., 2021), including risk of parental burnout (Gerain et al., 2018; Mikolajczak, 2018; Edelstein et al., 2017; Lindström, 2010). In addition, the Covid-19 pandemic heightened the stress levels of many parents and concomitantly the potential for domestic violence (Charton et al., 2022; Kathryn et al., 2020).

17A qualitative study that focuses on documenting the experiences of the fathers of critically ill children reveals that many had already been feeling distress. Some felt that they had lost control of the situation, an additional concern as they tended to withdraw into themselves and did not seek help (Chénard et al., 2023).

18Despite the significant challenges facing the parents of a critically ill child, Teicher et al. (2022) identified two determinants of parental resilience. The first is receiving support, e.g. support for caregiving, and emotional, informational and material support. A positive attitude is the second determinant of parental resilience (e.g. belief in one’s abilities, self-awareness and self-compassion, and the ability to reframe expectations).

Siblings

19Studies also show that living with a critically ill child can trigger a myriad of emotions in siblings, the consequences of which can be significant (Mooney-Doyle et al., 2022; O.-d’Avignon, 2012). Many siblings are said to experience sadness, boredom, anger and negative emotions toward the sick child or adolescent (Dinleyici et al., 2019; Long et al., 2018). Some siblings withdraw into themselves, display conflicting behaviours, or become irritable and depressed (Tay et al., 2022). Siblings may also experience shame and discomfort due to the physical changes in their sick brother’s or sister’s appearance and may have trouble accepting that their family is different (Tay et al., 2022).

20Teicher et al. (2022) reveal parents’ concern that the time they spend with their sick child is reducing the time they spend with their siblings. Many parents believe that this may cause the siblings to feel jealous and develop negative behaviours, or that it may strain the parent-sibling relationship. Others believe that having a sick child in the family should actually increase their children’s level of maturity.

Loved ones

21Although many social policies focus on the sick child and their family, few studies have examined the experience of significant others, such as grandparents, extended family members or friends. A qualitative study (Chénard, 2020) shows that these individuals are also strongly affected by the situation. Emotions are more intense at birth, at the announcement of the diagnosis and during hospitalizations. Most loved ones are reluctant to express their feelings to the child’s parents because they’re afraid of burdening them with more grief. Although loved ones may be extremely concerned about the situation, access to help and support services specifically for them appears to be very uneven. Some receive little or no professional help from health and social service providers, while others have to turn to private resources.

Health professionals’ experience with palliative care

22Providing daily care to a critically ill child is a challenging task for family members and it can have a variety of effects on a short-, medium-, and long-term basis. However, science also acknowledges the individual and collective consequences for health professionals of managing and caring for critically ill children.

23Health professionals working with critically ill children may be part of an interdisciplinary PPC team or of a treatment team. Regardless of their position, they face unique challenges that can have a significant impact on their physical, emotional and professional well-being (Kiernan et al., 2022; Papadatou, 2021). This discussion will cover the emotional issues resulting from professional practice in PPC and the main recommendations to prevent their consequences.

Issues related to emotional stress

24Health professionals working in PPC are often confronted with intense emotions, such as sadness, helplessness and a sense of injustice (Papadatou, 2021). These emotions are intensified by their close relationship with the child and their family, as well as by the uncertainty in the sick child’s prognosis and the parents’ suffering (Rico-Mena et al., 2023). Papadatou (2021) states that health professionals never get used to dealing with the end of life or death of a child. When faced with these difficult situations, they employ a range of behaviours to cope with the emotional stress caused by their involvement (Papadatou, 2021). As professionals they try to appear invulnerable and in control but this can lead to harmful consequences: being so overwhelmed by emotions that their ability to function is impaired (Papadatou, 2021). According to Papadatou (2021), the goal is to find a balance between these two states. For a number of health professionals, managing these emotions is a challenge because of the role they play in caring for the child and their family. The diseases and conditions of children in PPC are mostly long-term, so if the child is seriously ill, health professionals can remain with them and their family for a long time, even years (Roca-Mena et al., 2023). Furthermore, in a highly emotional context such as palliative care, the relationship of trust and closeness between families and health professionals tends to develop much more rapidly than under other circumstances (Bergsträsser, 2017).

25Some professionals will be at risk of burnout in this particular situation. Their daily interactions with families can lead to significant post-traumatic stress when, for example, they are forced to witness unresolved pain in the child they are treating. This state of secondary traumatic stress generates a constellation of reactions in the cognitive, psychological and interpersonal spheres. Compassion fatigue is a form of secondary traumatic stress that can be observed in health professionals who are repeatedly exposed to patient suffering (Kase et al., 2019). Constant exposure to the suffering and death of children can lead to compassion fatigue, which can undermine their own sense of self-worth (Rourke, 2007). Continually witnessing the physical and psychological suffering of a child and the child’s family can cause psychological harm to health professionals (Roca-Mena et al., 2023), some of whom are at greater risk than their colleagues. These are individuals who exhibit a high level of empathy, but whose personal coping mechanisms are inflexible and ineffective, predictors of compassion fatigue and high levels of psychological distress (Rourke, 2007).

26In his article, Rourke (2007) makes several recommendations to protect PPC health professionals from the cumulative effect and complications associated with compassionate fatigue. These are some of them:

27First of all, personal strategies that involve adopting a lifestyle that promotes restful sleep, a healthy and diversified diet, and regular exercise. Adding calming daily activities such as yoga, meditation, deep breathing and massage therapy helps maintain a sense of equilibrium. Recreational activities outside of work are also beneficial in renewing energy and concentration. It is also important to allow personal time to grieve the death young patients. Being attentive to your emotional reactions to death and seeking counselling, if needed (Rourke, 2007), are essential. The term self-care has become increasingly common in the field of occupational health. In PPC, self-care behaviour means that a health professional must show compassion for themselves when they experience negative emotions associated with working with sick children. For instance, they could take a break to rest, talk about their feelings to a caring listener, or engage in a meaningful activity outside of work. It is vital that the caregiver seek balance by actively utilizing all available resources (Davies et al., 2022).

28Professional strategies that involve participating in a mentoring or clinical supervision system on a regular basis also reduce the emotional stress of working in PPC. This means being clear and consistent about your limits in relation to yourself and others, and developing a diversified practice that involves teaching, research or other activities peripheral to direct family care. It is also helpful to become involved in the care of children who are outside of PPC. These recommendations aim to achieve a balance that enables health professionals to practice in different settings (e.g. general pediatrics and PPC) so as not to be exposed solely to children with serious and incurable diseases.

29Lastly, if the institutions that train health professionals developed organizational strategies, then compassion fatigue would be merely a potential consequence, not a weakness, for medical professionals involved with critically ill children (Shanafelt et al., 2003). Providing caregivers with training and supervision opportunities, some time off, and a positive and pleasant work environment are also positive prevention strategies in the workplace (Roca-Mena et al., 2023). Support between colleagues should also be valued. Team members can discuss strategies to reduce burnout and compassion fatigue through discussions and the practice of active listening (Roca-Mena et al., 2023). While support resources are allocated from the outset to members of the interdisciplinary team, the support needs of administrative and clerical team members who also have to work with families of critically ill children should not be underestimated (Swinney et al., 2007).

Issues related to communication with families

30Health professionals in PPC must communicate sensitive and hard-to-receive information to the families they work with on a daily basis. This bad news is often related to the deterioration of the child’s health, the end-of-life phase and death. Because the subject of death is taboo in our society, Bellieni (2022) compares PPC to a minefield; health professionals must recognize what cannot be recognized and say what cannot be said. Despite the severity of the conditions that children in palliative care experience, health professionals suffer from a lack of training and preparation for communicating with patients and their families about sensitive topics related to end of life and death. According to Oates and Maani (2022), a number of health professionals acknowledge that death is a subject that was rarely addressed during their initial training (Oates & Maani, 2022). They experience discomfort when they wish to establish open and transparent communication with the families of the critically ill child, as recommended (Kiernan et al., 2022). This paradox can only have harmful consequences for them.

31Although communication with the family is recognized as important in PPC (Dussel & Jones, 2021), there are certain factors that can impair caregivers’ communication skills about end of life and death. Many factors are intrinsic for clinicians, including frequent and continual exposure to death, a lack of time to devote to end-of-life patients, an increase in workload, communication of bad news, and a rapid return to curative practice with other patients (Bellieni, 2022). Some factors are related to the psychological state of the health professional. For example, frequent exposure to the death of patients, in addition to the multiple bereavements experienced by the caregiver, can lead to guilt and a sense of powerlessness that diminishes the caregiver’s sense of competence in supporting the child, the family and colleagues (Bellieni, 2022). Other factors associated with the child and their family may make communication difficult, such as the cultural and religious beliefs of the family, the perceived or actual preferences of the child, the level of education of the parents and their socio-demographic status, the psychological state of the mother (Rodriguez et al., 2013) and the desire of families to protect the child (Bellieni, 2022).

A worldview and common values shared by caregivers

32Davies et al. (2022) were interested in profiling PPC practitioners who stand out for the quality of their work. The authors suggest that these professionals have similar worldviews and values. In fact, their worldview influences their values, which in turn guide their decisions, actions and attitudes in relation to the families of critically ill children. These PPC professionals share a vision of human beings that encompasses all of their complexity, diversity and ambiguity. This worldview recognizes good and bad, joy and grief, successes and failures as legitimate and complementary. These health professionals also wish, through their work, to make a positive difference in the lives of critically ill children and their families, by transforming this traumatic experience as best they can. They view every interaction with the family as an opportunity to learn and engage, rather than a demand for performance and tasks. In return, parents feel accepted and valued as members of the treatment team (Davies et al., 2022). These results converge with the work of Kiernan et al. (2022), which highlights three attitudes of professionals working with children with life-limiting diseases. They state that they are dedicated to meeting the needs of the child and their family by working to be “present,” “focused” and “strong.” These health professionals seem to recognize that a caring presence and error-free work with children are complementary – all the while remaining empathetic and grounded to support the family in its time of need.

Assessing the quality of pediatric palliative care

33PPC assessment is considered essential to improve clinical care, evaluate service quality and ensure program funding. It has been identified as a priority in the PPC research program (Chong et al., 2018; Goldhagen et al., 2016; Downing et al., 2015; Harding et al., 2017; Voyles, 2013; Baker et al., 2015). However, the effectiveness of PPC as currently practiced is unclear due to the difficulty of defining appropriate outcome measures in this area (Hearn et al., 1997; Bausewein et al., 2016; Araújo et al., 2015; Kaye et al., 2017). Quebec in particular has no quality criteria to date. A number of obstacles to researching the effects of PPC were identified: the small sample size, the difficulty of identifying a relevant comparison group and the variety of PPC situations due to the broad range of ages, diseases or conditions. For example, more than 7000 rare diseases are listed in the world and nearly 75% of them target children (RQMO, 2023).

34Some consequentialist authors have criticized the value of assessing children’s quality of life in a palliative setting. They argue that, in the face of inevitable death, measuring the impact of quality of life would no longer be a priority (Knapp et Madden, 2010). These assumptions are often related to misrepresentations of PPC, which is frequently limited to end-of-life moments. Many systematic reviews have shown that there are currently no suitable measures to assess the quality of PPC (Coombes et al., 2016, Friedel et al., 2019, Mayland et al., 2022). This finding is consistent with the conclusion of Knapp and Madden (2010) and Huang et al. (2010), who found that none of the generic quality-of-life instruments were adapted to the child’s PPC needs.

35However, there is growing interest in measuring quality of life, which is used as an endpoint in many clinical settings. In palliative care studies, quality of life may become the primary or even the sole endpoint to be considered (Fayers et Machin, 2008). Quality of life outcomes are now commonly referred to as patient (or person)-reported outcomes (Patient reported outcomes measures, PROs) to reflect more broadly all areas measured, such as pain, fatigue, depression and physical symptoms, but also relational, family, social and spiritual dimensions (Scott et al., 2023; Constantinou et al., 2019).

36In addition to these challenges, many clinical teams and researchers have tried in recent years to develop measuring instruments to assess either the quality of life of children in PPC (Coombes et al., 2022, Friedel et al., 2021, Namisango et al., 2019, Goldhagen et al., 2016), or the quality of PPC interventions in different fields, such as pediatric oncology (Ananth et al., 2022), non-verbal children in neurology (Pelke et al., 2021), PPC training (Bogetz et al., 2022; Chocarro González et al., 2021), economics through cost-benefit studies of PPC (Bower et al., 2022, Lo et al., 2022, Lysecki et al., 2022, Chong et al., 2018) and even the impact of PPC on nurses’ sense of personal effectiveness (Hamre et al., 2022).

Quality criteria of pediatric palliative care

37PPC is marked by disruptions, whether related to the trajectory of the disease passing from a curative to a palliative phase, to changes of location (from home to hospital), or to meetings with a variety of caregivers. Given these disruptions, coordination and continuity of care are essential (Friedel, 2020). The characteristics and quality criteria of services ensuring continuity of seamless care (Friedel, 2014) vary (Widger et al., 2019; Miller et al., 2015; Kaye, 2015; Lichtenthal, 2015; Weaver, 2015; Niswander, 2014; Tay et al., 2022; Zuniga-Villanuova et al., 2021). Optimal management of pain and other symptoms is a priority in PPC. To achieve this, it is essential to have an interdisciplinary team of health professionals, social workers, psychologists and volunteers trained to provide emotional support to families. Families must be able to access a PPC service 24 hours a day, 7 days a week. Care must focus on the needs of all family members, including parents, siblings and grandparents. PPC must also be holistic, that is to say, it must take into account the bio-psycho-social and spiritual needs of the child and their family. Establishing a relationship of trust and a real partnership in decision-making processes requires transparency in communication with family members. Families must also be involved in making decisions about treatment and where to have the care. PPC services need to be made free and integrated into the social security system. PPC facilities must also have the appropriate medical equipment and materials based on the child’s health status and specific needs. Early care planning is a crucial aspect of PPC. Families must have the opportunity to access home care or arrange for the death of their child at home, if they so wish. They must also have access to pediatric respite care facilities. Coordination between the different services must be structured and effective, using online communication tools and regular consultation meetings. Lastly, it is essential to offer bereavement support services to families, particularly bereaved siblings, and to school communities.

38To sum up, quality PPC must include accessibility, coordination, flexibility and individualization of care for the child, their family and other significant loved ones. The quality of life of both the child and the family members is dependent on these attributes. Can care that has been shown to be effective and that takes into account long-term human, material, and organizational resources be called sustainable PPC? Despite the challenges, assessing the impact of PPC is necessary not only to improve individualized care for children, but also to make credible this discipline, which is still often viewed as an intuitive art and limited to the end-of-life phase. Comprehensive assessment can help ensure longer-term funding for PPC services.

Contributions to this issue

39PPC has advanced significantly in recent years. Nevertheless, in a systematic review of international service delivery, the authors in this issue show that the regions with the greatest needs for PPC are the least well served (Knapp et al., 2011). Sixty-five per cent of the countries included in the study did not have PPC services (Knapp, 2011). A cross-sectional study published in 2017 estimated that 21 million children worldwide would be eligible for palliative care while 8 million of them need specialized palliative care (Connor, 2017).

40In a recent literature review, Winger et al. (2020) assert that most studies focus on the views of mothers and that few are interested in the perspectives of children and fathers.

41The findings indicate that increasing PPC training and transferring knowledge to southern countries is necessary to reduce inequalities in access to PPC services. Moreover, promoting the voices of critically ill children and adolescents in PPC studies will document their needs from their own perspective, which will assist in developing innovative and specific practices.

42This thematic issue on PPC provides an opportunity to raise awareness of such innovative practices, both in PPC research and practice. Some articles advance the field of palliative care through the reflection that they stimulate.

43The article by Claude-Julie Bourque, Marta Martisella and Marc-Antoine Marquis discusses the interdisciplinary, human and ethical culture that these authors witnessed in a pediatric hospital in Quebec. Claire Van Pevenage, Frank Devaux and Christine Fonteyne engage in an interdisciplinary discussion on euthanasia among minors in Belgium. What lessons can be learned after this legislation was passed in Belgium? Brigitte de Terwangue’s team encourage a discussion on the demands of parents who may be in conflict with the well-being of their child, resulting in a delicate situation for the caregiver.

44Other articles enrich the field of palliative care with new knowledge from scientific research. Fortin, Lajeunesse and Lessard cast a critical eye on the experience of Montreal families facing the end of life of a sick child. Barros Polita, de Montigny and Nascimento describe the experiences of Brazilian fathers of children suffering from recurrent cancer. Lastly, Simard documents the steps that led to the development of a program that builds resilience in families living in remote settings and dealing with pediatric cancer.