Si le deuil compliqué est aujourd’hui une entité clinique reconnue chez l’adulte, il reste encore particulièrement difficile à appréhender chez l’enfant, tout comme le sont les autres complications du deuil. Dans le présent article, nous rappelons d’abord la spécificité du deuil chez l’enfant. Puis, nous évoquons ce qu’il en est des complications du deuil infantile. Et finalement, nous abordons les perspectives de prises en charge possibles de ces enfants et de leurs proches dans ces contextes si spécifiques de deuil compliqué.
OBJECTIVE: Meaning-making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning-making among pediatric populations with advanced illness to understand how this process unfolds before the child's death. This study explores meaning-making pre-bereavement among children with advanced cancer and their parents.
METHODS: As part of a larger study examining shared decision-making near the end-of-life, 24 children with advanced cancer and/or high-risk cancer, 26 mothers, and 11 fathers participated in individual, semi-structured interviews. Analyses focused on questions regarding meaning-making. Four coders analyzed the data via directed content analysis.
RESULTS: Three major meaning-making themes emerged: (1) sense-making (i.e., unknown, no sense/meaning, religious/spiritual explanations, scientific explanations), (2) benefit-finding, and (3) purpose/legacy. Some stated they were unable to make sense of the diagnosis, because there was no reason, they were not there yet, or they were dealing with the situation and moving forward. Others reported finding meaning through spiritual and scientific explanations. Many identified benefits related to the child's illness, such as personal growth and stronger relationships. Some parents expressed their purpose in life was to live for their children, while others shared their child's legacy as a way to find meaning.
CONCLUSIONS: Our findings highlight the struggle children and parents often face when attempting to make sense of the child's advanced or high-risk illness. Clinicians might consider if meaning-centered interventions designed for use in adults at end-of-life and bereaved parents may be helpful for children with advanced or high-risk cancer and their parents.
Communication is as important as the drug and the knife in medical care, particularly when patients are facing life-threatening conditions. However, the ability to communicate effectively has been commonly associated with strong emotional barriers among healthcare professionals and family members. Studies that have focused on paediatric oncology have showed that openness about the transition from curative to palliative care is frequently avoided. As long ago as the 1980s a paper in this journal reported that children often wanted to share their thoughts and feelings at the end of life, but that adults often failed to recognise that need.
BACKGROUND: Treatment options for childhood cancer have improved substantially, although in many low- and middle-income countries survival is lagging behind. Integral childhood cancer care involves the whole spectrum from detection and diagnosis to palliative and survivorship care.
METHODS: Based on a literature review and expert opinions, we summarized current practice and recommendations on the following aspects of childhood cancer in Latin America: diagnostic processes and time to diagnosis, stage at diagnosis, treatments and complications, survivorship programs and palliative care and end-of-life services.
RESULTS: Latin America is a huge and heterogeneous continent. Identified barriers show similar problems between countries, both logistically (time and distance to centers, treatment interruptions) and financially (cost of care, cost of absence from work). Governmental actions in several countries improved the survival of children with cancer, but difficulties persist in timely diagnosis and providing adequate treatment to all childhood cancer patients in institutions with complete infrastructure. Treatment abandonment is still common, although the situation is improving. Cancer care in the region has mostly focused on acute treatment of the disease and has not adequately considered palliative and end-of-life care and monitoring of survivors.
CONCLUSIONS: Decentralizing diagnostic activities and centralizing specialized treatment will remain necessary; measures to facilitate logistics and costs of transportation of the child and caretakers should be implemented. Twinning actions with specialized centers in high income countries for help in diagnosis, treatment and education of professionals and family members have been shown to work. Palliative and end-of-life care as well as childhood cancer survivorship plans are needed.
PURPOSE: The Norwegian Health Personnel Act (HPA §10a) obliges health professionals to contribute to meeting minor children's need for information about their parents' illness and prognosis. Previous research has shown that many parents withhold information about illness and anticipated death from their children. This study explored main considerations for palliative health-care professionals in these situations, and how they negotiate conflicting considerations of confidentiality and child involvement.
METHOD: This qualitative exploratory study involved semi-structured interviews with 11 palliative health-care professionals. Hermeneutics informed the data analysis.
RESULTS: The health professionals' main considerations were sustaining patients' hope and building trust in the professional-patient relationship. Both concerns were grounded in respect for patient autonomy. The health professionals negotiated patient autonomy and child involvement in different ways, defined in the present analysis on a continuum ranging from granting full patient autonomy to going directly against patients' will.
CONCLUSIONS: The professional-patient relationship is the primary consideration in the health care context, and decision making on the degree of children's involvement happens in a dialogical process between health professionals and patients. Close professional-patient relationships might increase the emotional impacts on health professionals, who consequently might give greater relative weight to patients' will. We propose that procedures for initiating collaboration with professionals in the child's everyday life context help health professionals involving the child without threatening trust.
Released in 2016, That Dragon, Cancer was created by Joel’s parents, indie game developer Ryan Green and his wife Amy, to tell his story interactively and thus honor his too-short life. Diagnosed at age 1 with an atypical teratoid rhabdoid tumor and given months to live, Joel lived with his disease for 4 years. Over the course of several vignettes, players progress through his diagnosis, treatment, and death using point-and-click–style mechanics and occasional game styles from other video games (platforming, racing, puzzle solving). Wavering between hyperrealism and fantasy, players experience Joel’s joy playing with a puppy and the horror of being unable to console him, the fantasy of imaginative play and the banality of a cross-country trip to participate in a clinical trial, and more. In short, the game sets out to encompass the fullness of Joel’s life.
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Losing a loved one is among the most common and stressful traumatic events that a child or and adolescent can experience and can be associated with mental health and somatic disorders, as well as a range of life issues and potentially negative outcomes that may impact longitudinal development. Complicated grief, a disorder that has been studied primarily among adults, has received increasing recognition among children and adolescents in recent years. The demonstration of the distinctive character of grief reactions in relation to major depressive disorder and posttraumatic stress disorder has resulted in the inclusion of “persistent complex bereavement disorder” in an annex section of DSM-5 and of “prolonged grief disorder” in ICD-11. The grieving process in children and adolescents is not linear and is often characterised by periods of regression. Developmental phases should be taken into account to understand and clinically describe grief reactions occurring during childhood and adolescence. There are currently numerous interventions for bereaved children and adolescents, but little evidence to support them. More research focusing on the understanding of the underlying mechanisms and the risk factors for complicated grief among children and adolescents, as well as the implementation of evidence-based interventions, is definitely warranted.
Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent–child communication. We examined the impact of a web-based legacy intervention on parent–child communication. Facebook advertisements were used to recruit families of children (ages 7–17) with relapsed/refractory cancer. Parent–child dyads were randomly assigned to the intervention or usual care group. The intervention website guided children to create digital storyboards over 2 weeks by directing them to answer legacy questions about themselves and upload photographs, videos, and music. Families received a copy of the child’s final digital story. Children and parents completed the Parent–Adolescent Communication Scale pre- (T1) and post-intervention (T2). Linear regressions tested for differences in change from T1 to T2 between the groups controlling for T1 values using an alpha of P<0.05. Intervention effects were measured using Cohen’s d. Ninety-seven parent–child dyads were included for analysis. Changes in parent–child communication were not statistically significantly different between the groups, yet meaningful intervention effects were observed. The strongest effects were observed for improving father–child communication (Cohen’s d = -0.22–0.33). Legacy-making shows promise to facilitate improved parent–child communication, particularly for fathers.
Clinical Trials Registry: Number NCT04059393.
BACKGROUND: Parents with advanced cancer struggle initiating conversations with their children about the cancer. When parents do not have the tools to talk with their children, they silently watch their children attempt to navigate their illness but can only wonder but not know what their children are thinking. The objective of the current study is to describe, from parents living with advanced cancer, the worries and concerns parents wonder their child holds, but has not spoken, about the parent's cancer.
METHODS: Twenty-seven parents with incurable cancer enrolled in a 5 session telephone intervention pilot study during which they were asked, "What questions do you have about what your child is thinking or feeling about the cancer?" Data were transcribed and inductively coded using content analysis methods adapted from grounded theory.
RESULTS: Analysis yielded 14 categories of parent concerns organized into 6 larger conceptual domains: Being Concerned and Scared about My Cancer; Worrying about Me; Changing How We Talk and Live Day-to-Day; Not Knowing What Will Happen; Having Unanswered Questions about My Cancer; and Understanding My Disease Is Terminal.
CONCLUSIONS: Study results add to our understanding of the magnitude of the emotional burden parents with advanced cancer carry as they struggle to balance their diagnosis and treatment and their life as parents.
OBJECTIVE: Parents often feel ill-equipped to prepare their dependent children (<18 years old) for the death of a parent, necessitating support from professionals. The aim of this study is to explore health and social care professionals' (HSCPs) experiences and perceptions of providing supportive care to parents regarding their children, when a parent is dying from cancer.
METHODS: Semi-structured qualitative interviews were conducted with 32 HSCPs, including nurses, allied health professionals, social workers and doctors from specialist or generalist roles, across acute or community sectors.
RESULTS: HSCPs' perceptions of the challenges faced by many families when a parent is dying from cancer included: parental uncertainties surrounding if, when and how to tell the children that their parent was dying, the demands of managing everyday life, and preparing the children for the actual death of their parent. Many HSCPs felt ill-equipped to provide care to parents at end of life concerning their children. The results are discussed under two themes: (1) hurdles to overcome when providing psychological support to parents at end of life and (2) support needs of families for the challenging journey ahead.
CONCLUSIONS: There appears to be a disparity between HSCPs' awareness of the needs of families when a parent is dying and what is provided in practice. HSCPs can have a supportive role and help equip parents, as they prepare their children for the death of their parent. Appropriate training and guideline provision could promote this important aspect of end of life care into practice.
BACKGROUND: Conversations about death are often associated with fear, anxiety, avoidance and misunderstandings. Many adults feel that these discussions are inappropriate and confusing for young people. In this project, two fourth-year nursing students partnered with a local palliative care team to examine death education for children. The nursing students focused on children's understandings of death and their coping abilities, the lack of appropriate discussions about death with children, and the implementation of death education in public schools. Three online death education resources were identified and evaluated for use in public schools. This project fueled preliminary local discussions and advocacy efforts in the provision of death education for children. In the future, death education will need to be incorporated into education plans at local schools, and could be done in collaboration with the local palliative care team.
CONTEXT: Although high quality research with patients and family members is needed to improve palliative care, difficulties in recruitment are often reported.
OBJECTIVES: The present article analyses the authors` experiences in recruiting participants of two types of dyads for the study 'Dy@EoL - Interaction at the end of life in dyads of parents and adult children'. Recruitment challenges and factors found to improve recruitment are examined.
METHODS: Between February 2018 and November 2019, the research team cooperated with diverse inpatient and ambulatory palliative and hospice care providers to recruit both dyads. Cooperation strategies and adaptations were protocolled. Data on (non-)participation were recorded and analysed using descriptive statistics.
RESULTS: The recruitment rate was 34.6% (dyad 1, terminally ill adult children with parents: 36.4%; dyad 2, terminally ill parents with adult children: 33.9%). In total, 82.2% of participants were recruited from inpatient settings. The research team has applied various strategies, such as public outreach activities and the extension of recruitment partners. The study protocol was adapted at an early stage to include single participants. Of all patients, 47.7% participated without their dyad partner. The main reason to exclude their family member was the patients' wish to protect them from extra burden.
CONCLUSION: The recruitment was more successful in inpatient than in ambulatory settings. The extension of recruitment partners was beneficial to recruit participants from ambulatory contexts. The inclusion of single participants was conducive as a great number of patients participated without their dyad partner. Sharing the obtained experiences can be helpful for future research planning.
BACKGROUND: The number of centenarians in Europe is increasing; many face health impairments. Adult children often play a key role in their care, but there is a lack of research into what it means for these caregiving relatives to be confronted for many years with their parents' end of life (EOL), dying and death as well as their own advancing age.
AIM: This study aims to analyse the challenges of caregiving adult children regarding their parents' end of life and the related burdens and barriers they report.
MATERIAL AND METHODS: Semi-structured interviews were conducted with 13 caregivers following a theory-based and tested guideline. The computer-aided coding and evaluation followed the structured content analysis approach.
RESULTS: The analysis showed three main themes: 'Confronting EOL', 'Communicating about death and dying' and 'Assisting in the terminal phase'. The respondents commented on burdensome demands and concerns about the future. Further, a strong underlying presence of intra- and interpersonal conflicts relating to EOL became apparent.
DISCUSSION: The results indicate several potential burdens for centenarians' caregiving offspring. They are confronted with a double challenge resulting from the combination of their own advanced age and experiencing the burdens of their parents' very old age. Further, some participants struggled with their own unclear perspective on the future because of the relative but unclear proximity of the parent's death. Multiple conflicts and overlapping conflict dimensions emphasise the potential of the EOL topic to influence the well-being of family caregivers and care recipients.
LIMITATIONS: The convenience sample used for the study may cause limitations, for example, the fact that persons with a formally lower educational status are not represented.
CONCLUSION: The findings suggest that interventions designed for family-related care situations should include topics like 'Finiteness and grief', 'Communicating about dying and death' and 'Decisions and dispositions at EOL'.
Anne-Dauphine Julliand a perdu ses deux filles, Thaïs et Azylis, d’une maladie orpheline.
"J’ai beaucoup souffert et je souffre encore, écrit-elle. Mais j’ai appris la consolation, ce délicat rapport à l’autre: s’approcher, toucher, parler. »
Grâce à des scènes vécues, Anne-Dauphine partage ses réflexions qui touchent juste. Si elle évoque bien sûr sa famille, son livre est aussi un hommage à tous les consolants : une soeur qui vous prend dans les bras, une infirmière qui s’assoit quelques minutes au bord du lit et prend juste le temps « d’être là ».
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Disaster Falls : le nom d’un lieu perdu – des rapides sur la Green River entre l’Utah et le Colorado. Mais le nom, aussi, d’un événement tragique. A l’été 2008, lors d’un voyage organisé, le kayak dans lequel Stéphane Gerson naviguait avec son fils Owen chavira dans ces eaux froides. Après trois heures de recherches, on retira de l’eau le corps d’Owen. Il avait huit ans.
Au croisement du récit, de la chronique et de l’enquête, Disaster Falls entretisse les émotions du père, l’analyse de l’historien et la quête de sens. L’histoire hante le livre, que ce soit celle de ces rapides depuis leur découverte en 1869 ; celle de l’expérience du deuil parental (Shakespeare, Mallarmé, Hugo...) ou celle de catastrophes collectives qui, de la Shoah au 11-Septembre 2001, interfèrent également dans ce désastre familial.
Les derniers chapitres de Disaster Falls s’ouvrent à une autre vision de la mort. Deux ans après l’accident, le père de Stéphane Gerson, atteint d’un cancer inopérable, opte pour l’euthanasie en Belgique. Après avoir perdu un fils, l’auteur accompagne maintenant les derniers jours de son père. Autre filiation, autre mort – une mort acceptée, apaisée, faite sienne. "J’étais un vivant entre deux disparus."
Les auteurs décrivent les différents aspects du processus de deuil périnatal afin de faciliter l'accompagnement des familles touchées par ce drame. Ils citent notamment les risques psychopathologiques qui peuvent découler de cet événement bouleversant l'ordre des générations, tels que la dépression, les troubles anxieux ou le stress post-traumatique.
Les trois auteures vivent chacune le deuil d'un enfant. Elles évoquent cette blessure ainsi que leur deuil. Elles expliquent comment elles ont pu avancer dans leurs vies malgré la souffrance, en découvrant que le lien créé avec leur fils dépasse les frontières de la mort.
In England, a child death review process must be undertaken when a child dies, regardless of the cause of death. Scotland and Wales have their own version of the child death review process, while it is the author's understanding that Northern Ireland are still developing their process. An important aspect of this process is family engagement and bereavement support. This article is an introduction to the bereavement support standards developed by the National Children's Hospitals Bereavement Network, a newly formed group of specialist children's nurses and allied health professionals interested in bereavement care. These standards translate the statutory requirements into practical guidance for healthcare professionals working in children's hospitals in the UK or district general hospitals that offer services for children and families. They also apply to NHS trusts that care for children and need to develop a local policy and workforce with the appropriate skills to provide bereavement care, thereby improving the experiences of families and healthcare professionals. The standards would also be applicable to other NHS trusts and healthcare services in the UK who want to develop an approach to bereavement care and support for families.
OBJECTIVES: To develop a generalizable advance care planning ACP intervention for children and children, adolescents, and young adults with serious illness using a multi-stage stakeholder driven approach.
STUDY DESIGN: We first convened an expert panel of multidisciplinary HCPs, researchers, and parents to delineate key ACP intervention elements. We then adapted an existing adult guide for use in pediatrics and conducted focus groups and interviews with HCPs, parents and seriously ill AYAs to contextualize perspectives on ACP communication and our pediatric serious illness communication program (PediSICP). Using thematic analysis, we identified guide adaptations, preferred content and barriers for PediSICP implementation. Expert panelists then reviewed, amended and finalized the guide.
RESULTS: Stakeholders (34 HCPs, 9 parents, and 7 seriously ill AYAs) participated in focus groups and interviews. Stakeholders validated and refined the guide and PediSICP intervention and identified barriers to PediSICP implementation including need for HCP training, competing demands, uncertainty regarding timing and documentation of ACP discussions.
CONCLUSION: The finalized PediSICP intervention includes a structured HCP and family ACP conversation occasion supported by a three-part communication tool and bolstered by focused HCP training. We also identified strategies to ameliorate implementation barriers. Future research will determine feasibility of the PediSICP and whether it improves care alignment with patient and family goals.