Familles, intervenants et soins palliatifs pédiatriques
Directed by Josée Chénard, Marianne O.-d'Avignon, Marie Friedel, Anne-Catherine Dubois
Pediatric Palliative Care: Implications for Families and Caregivers
Josée Chénard, Marie Friedel, Marianne O.-d'Avignon, Anne-Catherine Dubois
Research Framework: This article proposes to define pediatric palliative care by adopting an approach centered on the whole family and the various health professionals supporting them.
Objectives: The main purpose of this introduction is to define pediatric palliative care, to describe the population likely to benefit from it, and to outline its main repercussions for families and caregivers. It also aims to contextualize each article in the issue.
Methodology: This article is based on a review of the literature.
Results: A definition of pediatric palliative care, the population concerned and the consequences for the whole family are presented.
Conclusions: The authors put forward several avenues for further research in the field of pediatric palliative care.
Contribution: This article contributes to the reflection and knowledge enrichment of those working with children and their families in pediatric palliative care. At the same time, it aims to introduce readers unfamiliar with this specific approach to care.
Pediatric Palliative Care Issues in a Tertiary Hospital Setting: A Portrait of an Interdisciplinary Culture of Hope
Claude Julie Bourque, Marta Martisella, Marc-Antoine Marquis
Research Framework: In 1999, Montreal’s Sainte-Justine University Hospital created a pediatric palliative care (PPC) service that was gradually deployed in all sectors of the hospital. A retrospective and critical research program aims to understand the evolution of practices and to pinpoint current issues.
Objectives: This article presents a portrait of PPC in tertiary care settings in order to fuel reflection on the evolution of practices by identifying research priorities at the clinical, organizational and systemic levels.
Methodology: A mixed methods approach is used for this research intervention. An archive database (1999-2021) and workshop proceedings (2021-2022) were subjected to descriptive statistical analysis, conceptual analysis, and collective narration.
Results: PPC interventions have increased over the year and then stabilized. The number of requests does not correlate with the number of deaths for a given area. Respondents described 10 central themes for PPC practice, training and research: (1) patient needs at the tertiary hospital setting, (2) pediatric specificities of palliative and end-of-life care, (3) child centredness, (4) pain and suffering or well-being and quality of life, (5) motivations and needs of caregivers, (6) interdisciplinary and interprofessional practices, (7) training and skills, (8) practice norms and indicators, (9) ethical and systemic dimensions of PPC, and (10) hope and high hopes.
Conclusion: Conceptual, procedural, and educational tools are essential to improve quality and accessibility of care and PPC services.
Contribution: We aim to contribute to the reflection on PPC by describing our perspective and by stimulating interactions among the various hospitals and communities involved.
Interdisciplinary Reflections for the Support of Euthanasia Requests of Minors in Belgium
Franck Devaux, Claire Van Pevenage, Christine Fonteyne
Research framework: In Belgium, euthanasia was made available to minors in February 2014. The request to die must be expressed by the minor and receive parental consent. It is regulated by an interdisciplinary process and support for situations of constant, unbearable and unappeasable physical suffering presenting no other reasonable solution in the context of an incurable condition.
Objectives: Share reflections and recommendations on support for children, their families and teams in the context of euthanasia requests. They aim to point out the elements that this support has in common with any care process, but also those that characterize it specifically.
Methodology: Since 2014, the pediatric palliative care mobile team of the Queen Fabiola University Children’s Hospital (HUDERF) of the Brussels University Hospital (HUB) of the Université Libre de Bruxelles (ULB) has met regularly on an interdisciplinary basis to examine and discuss the various aspects of the law.
Results: The outcome of this dialogue opens up a field of reflection and guidelines for ensuring appropriate, regulated care. Its aim is to support all those involved in the emergence of a request for euthanasia. The aim is not to define a strict framework, but to propose generalizable benchmarks capable of ensuring dynamic, non-linear, collaborative and comprehensive care.
Conclusions: Euthanasia is a process of care and accompaniment that follows the multiple rhythms of the people for whom it is responsible. A human and interdisciplinary constellation is needed to guide this process.
Contribution: Euthanasia of minors in Belgium is a rare practice, little studied but never trivial. This article examines the exceptional singularity of this care process and the interdisciplinary resources needed to support it.
How to seek the best interests of the child in palliative care? Analysis of 2 complex case studies
Brigitte De Terwangne, Corinne Tonon, Dominique Bellis, Muriel Freson, Noémie Watterman, Julie Maelfeyt
Research Framework: In the context of the mission of a pediatric liaison team specializing in pediatric palliative care (PPC) in Belgium, this article analyzes the decision-making issues in the face of the best interests of the child in a study of two complex clinical cases that impacted this team and made them question their professional approach.
Objective: This article highlights the notion of the best interests of the child based on decision-making issues related to his/her health. When parents and the health care team disagree about the treatment of a child in pediatric palliative care, we will analyze the issues related to the shared decision-making process (SDP) and the ethical factors to identify avenues of understanding and their solutions.
Methodology: We have chosen as a method the study of 2 complex clinical cases experienced at home by a liaison team specialized in PPC. This qualitative method makes it possible to analyze the situation in its singularity and globality. It is an intrinsic case study, based on a practical problem encountered, a personal confrontation with a given complex professional situation (Duport, 2020).
Results: Our research exposes the complexity of the decision-making trajectory and the need to take into account the systems of influence in decision-making, as well as the importance for the care team to step back and have an ethical reading grid adapted to the given situation.
Conclusions: The management of a seriously ill child followed in a PPC is progressive and non-linear. Formalized shared decision-making (SDP) between the doctor, the child and his parents, and the health care team allows for the consideration of all the components involved in this process and aims to respect the best interests of the child. The different criteria create a climate of trust that is essential for the proper care of the child.
Contributions: Blocking in the therapeutic relationship is a symptom of loss of trust with the risk of withdrawal, but systems can sometimes self-generate their own solution, which demonstrates the importance of developing and training teams in the shared decision-making approach.
The Curative, the Palliative… What Does it Matter? The Experience of Parents who Accompanied their Child Through Serious Illness and End of Life
Sylvie Fortin, Sabrina Lessard, Alizée Lajeunesse
Research Framework: In serious illness, the proliferation of therapeutic possibilities often delays the moment when death is foreseen and when palliative care, too often associated with the end of life and death, is introduced into patients’ care paths. In this context, pediatric palliative care tries to play an active role in the care relationship, beyond the idea of treatments for recovery.
Objectives: Our aim is to better understand the moment when palliative care becomes a possibility in the trajectory of serious illness, and how it is represented. We examine how palliative care fits into the parents’ experience, as well as the way in which their experience of serious illness, and more so the relational dimension of the end of life, is expressed.
Methodology: We draw on the testimonies of parents whose children suffered major illness and death. Through individual semi-structured interviews between 2017 and 2019, we collected the stories of 16 Montreal children and adolescents (10 boys and 6 girls aged between a few weeks to 19 years) with a genetic or rare disease, cancer or multiple chronic conditions of migrant and non-migrant background.
Results: Not only is the type of illness an important figure in the palliative care trajectory, care and the families’ profiles also shape their perception of a (nonetheless) positive experience of their child’s end of life.
Conclusions: Curative/palliative therapeutic perspectives have little bearing on our participants’ satisfaction with care at the end of life, as long as a therapeutic trust bond is present between the family and the health care team. Both positively and negatively, this bond of trust influences the pediatric care relationships and major illness trajectories, as well as the end-of-life experiences of loved ones.
Contribution: Through the experiences of children at the end of life as shared (mostly) by mothers, this paper discusses both curative and palliative perspectives as chosen by the parents of children facing a poor prognosis. Beyond the different philosophies that inhabit these approaches, the quality (and continuity) of the relationships established with care providers is a determining factor in the quality of the experiences documented through our study.
The Experiences of Fathers of Children with Cancer Recurrence
Naiara Barros Polita, Francine de Montigny, Chantal Verdon, Lucila Castanheira Nascimento
Research Framework: Childhood cancer relapse requires new meanings and new strategies for the family to cope with this phase. The way men deal with situations of childhood illness is influenced by social norms, beliefs, and cultural values. Therefore, medical anthropology and masculinities were chosen as theoretical frameworks of this study.
Objectives: This article examines the experiences of fathers of children with cancer relapse.
Methodology: Narrative research conducted with 13 Brazilian fathers. Data were collected through in-depth interviews, using a semi-structured script and then processed through inductive thematic analysis.
Results: A thematic narrative synthesis was elaborated: “Good days, bad days: oscillating between the resignation of death and the hope of healing”. The news of the relapse in conjunction with the child’s signs of clinical worsening brought the fathers closer to the limits of treatment and the finitude of life, although they also presented with hope for a cure. As a result, fathers wavered between building emotion-centred strategies and adopting life-engaging behaviours and strategies. In addition to maintaining hope, fathers mobilized the following resources: religion, spirituality, and emotional and instrumental support.
Conclusion: Culture, especially masculinities, influence and is influenced by fathers’ experiences throughout a child’s cancer relapse.
Contribution: A better understanding of the particularities of men’s experiences facilitates the development of father-specific interventions. Palliative care can benefit fathers by helping them become aware of finitude and begin a process anticipatory mourning, which contributes to making sense of the experience and coming to terms with possible death.
Caring for a child with cancer: a multifaceted experience for families living far from specialized centres
Research framework: Cancer is the most common life-threatening disease in Canadian children. It is a traumatic family experience. Authors point out that affected families are more vulnerable if they do not have sufficient resources to support their resilience process. Families living in communities far from hospital centres specialized in pediatric oncology (HCSPO) face additional challenges because of limited access to resources and services that can meet their immediate needs. While the family experience of pediatric cancer is well documented in the scientific literature, the experience of being far from an HCSPO remains under explored. Gottlieb’s strengths-based approach to care and Walsh’s (2012 ; 2016b) family resilience building theory guided this study. This article presents findings from the first phase of a larger study, conducted between 2015 and 2021, those related to different contexts that may exacerbate family vulnerability.
Objective: Exploring factors related to the resilience process of families accompanying a child with cancer in a remote context (FACCRC).
Methodology: A descriptive qualitative approach was adopted by using 26 semi-structured individual and group interviews (n = 50 people: 39 members of 11 families, 11 nurses).
Results: Among the results obtained in the larger study, two main contexts of remoteness were identified and are presented here: (1) when the FACCRC are in their community, at the time of the child’s diagnosis, on their returns from the HCSPO and on a daily basis, and (2) when they are at the HCSPO, far from their loved ones and their usual landmarks. Contexts with specific risk factors that can compromise their resilience process.
Findings: Remoteness is a multi-contextual, persistent experience that affects all family members. It requires a specific family assessment, and is facilitated by better communication and collaboration between the specialized and regional hospital centres.
Contribution: The proposal of valuable leads for care more adapted to the reality of FACCRC.
From Solidarity to Death Threats: Care and Daily Kinship of Orphans After the Tutsi Genocide
Research Framework: This article is based on a PhD research in socio-anthropology about the transmission of familial memory among Rwandans living in France. We are interested in the day-to-day kinship of orphans after the genocide of the Tutsi in Rwanda.
Objectives: The objective of this article is to provide a better understanding of family reconfigurations in post-genocide Rwanda. We will see how the care of orphans has transformed the boundaries of kinship.
Methodology: We conducted an ethnographic study based on a non-linear fieldwork from 2014 to 2019. We carried out semi-directive interviews with Rwandans living in France who were less than 20 years old in 1994, as well as with their family members, in France or in Rwanda. This was complemented with the development of kinship trees and with observations made during commemorations.
Results: We document here several hosting situations for orphans after the Tutsi genocide: foster care, children’s households and orphanages. The Rwandan government pursued family-based policy that aimed at “reunification” or placement in a family. We present configurations of households of care that may or may not involve relatives, or even protect themselves from them.
Conclusions: The genocide provoked a crisis of orphans’ care that impacted kinship relations, through acts of solidarity or hostility. Households of care and lines of transmission have seen their boundaries redrawn by affective and material exclusion and inclusion of orphans.
Contribution: The article allows us to reinscribe kinship relations and everyday kinship in a given socio-economical and historical context, that of post-genocide Rwanda. It sheds light on the family and societal changes that occur in the aftermath of genocide.
Socio-fiscal Incentive Policies for Family Employment Captured by Social Practices: Class and Gender Mechanisms of Delegation
Sebastián Pizarro Erazo
Research framework: Since the 1990s, the French government has developed social and fiscal policies that encourage families to use home-based employment to delegate domestic, parental and care work. The objective was to encourage women’s ability to fulfil multiple social commitments. However, the studies point to the persistence of class inequalities in the practice of delegation and emphasize the workload that it implies for women.
Objectives: This article aims to understand the class and gender mechanisms at work in the practice of delegation. It thus identifies the extent to which the contemporary French reproduction regime, namely the organizational referential for the practices of taking charge of the activities that sustain human life, alleviates domestic work in families and particularly for women.
Methodology: Based on semi-directive interviews conducted in Île-de-France as part of a doctoral research project in sociology with 38 families, we will capture a set of measures emblematic of the reproduction regime through family practices: socio-fiscal incentive policies for family employment.
Results: The analysis shows that by leaving the organizational referential of the reproduction regime unchanged, socio-fiscal incentive policies for family employment maintain and even reinforce class and gender inequalities.
Conclusions: As long as the French reproduction regime does not reconsider the foundations of its organizational frame of reference, we have every reason to believe that policies encouraging the delegation of family activities will have unequal consequences.
Contribution: This article shows how the inconsistencies between referential and social practices hinder the transformative impact of public policies.
“There is no place for you”. Forms of Childcare Facilities’ Non-Recourse for Young Children in Popular Neighbourhoods
Pascale Garnier, Catherine Bouve, Carmen Sanchez, Valérie Viné-Vallin
Research Framework: Inequalities in access to childcare for young children are particularly strong in France. We analyze them through the question of the non-recourse to rights and services (Warin, 2016) in order to think about families’ childcare arrangements in relation to a local public offer.
Objectives: The objective is to research the different ways in which working-class mothers choose to care for their children when faced with a very inadequate public supply of early childhood care and an allocation criteria that are not favourable to them.
Methodology: The empirical survey is based on comprehensive interviews that were carried out with mothers (N = 27) in three working-class neighbourhoods in a city with very few childcare facilities.
Results: The analysis shows different forms of non-use that mothers have of childcare facilities. These forms are linked to the social and professional situations they are confronted with, that is in connection with an inadequate local supply: an assumed or asserted non-demand; a lack of information and knowledge of the supply and administrative procedures; a failure to offer and receive alternative proposals to the crèche, informal childcare by relatives or under the table. As their children grow older, mothers express increasing needs for care that are specifically at their development and socialization, and not only the needs related to their professional activity.
Conclusions: The difficulties encountered by mothers raise questions about the quantity and quality of municipal childcare provision, as well as the cobbling together of formal and informal childcare solutions.
Contribution: To understand whether or not mothers have recourse to extra-familial childcare, we emphasize the importance of simultaneously taking into account the situation of the local supply with which they are directly confronted and their own social and professional situation.
Obstacles to the Full Investment of Fatherhood as Portrayed by Haitian Fathers
Gabrièle Gilbert, Sophie Gilbert
Research framework: The difficulty of investment shown by the father towards his child, especially after the separation from the mother, is a common phenomenon in Haiti. This problematic – which exposes women and children to negative consequences – is hardly documented in the scientific literature.
Objectives: The objective of this article is to understand the way Haitian fathers portray the possible obstacles to the full investment of fatherhood in Haiti.
Methodology: A qualitative research framework was employed. Using an open-ended lead-in question, the researcher invited participants to share their subjective experience of fatherhood. A process of co–construction of meaning was conducted with the research subjects. Eleven fathers, living in Haiti without regular contact with at least one of their children, were interviewed. We did two interviews (1.5 hours each) with 10 participants, bringing the total number of interviews to 21.
Results: A thematic analysis revealed various potential obstacles to full paternal investment in Haiti, including the difficulty for the father to take his place within a matrifocal family configuration, the repetition of a failing paternal model, the tendency to adopt behaviours of avoidance (underpinned by a narcissistic vulnerability), as well as the psychic disinvestment of real fatherhood in favor of imagined one.
Conclusions: While the full investment in fatherhood seems to be regularly postponed by the fathers we met, their child remains present through their thoughts. The fathers’ participation in our research suggests a desire to change with regard to the problem.
Contribution: In addition to its contribution to the literature, this study offers avenues for future research. Recommendations for intervention are made, in a perspective of change regarding paternal investment in Haiti.
Objetivo: El objetivo de este artículo es entender cómo perciben los padres haitianos los posibles obstáculos a la plena encarnación de la paternidad en Haití.