Ce livre regroupe l'ensemble des informations nécessaires à la pratique des soins palliatifs pédiatriques : cadre réglementaire, concepts théoriques et projet de soin. Ayant pour fil conducteur les questions auxquelles le praticien et les équipes sont confrontés au quotidien, l'ouvrage prend en compte les interactions pluridisciplinaires.
Dans le cadre d’une présentation au 8e congrès international du réseau francophone de soins palliatifs pédiatriques à Liège, les auteurs développent une réflexion théorico-clinique sur la fonction du pychologue travaillant auprès d’enfants dont le pronostic vital est menacé. Des entretiens semi-structurés ont été menés auprès des psychologues de liaison de l’Hôpital des Enfants Reine Fabiola à Bruxelles. La réflexion s’articule plus particulièrement autour des difficultés, ressources et besoins des psychologues qui accompagnent les enfants qui risquent de mourir. L’expérience et la formation sont identifiées comme des ressources au même titre que le travail collectif, la solidarité et le lien. Les difficultés concernent certains aspects de la collaboration et de la communication entre soignants. Le cheminement personnel apparaît comme un élément essentiel.
Background: In 2018, >75,000 children were newly affected by the diagnosis of advanced cancer in a parent. Unfortunately, few programs exist to help parents and their children manage the impact of advanced disease together as a family. The Enhancing Connections-Palliative Care (EC-PC) parenting program was developed in response to this gap.
Objective: (1) Assess the feasibility of the EC-PC parenting program (recruitment, enrollment, and retention); (2) test the short-term impact of the program on changes in parent and child outcomes; and (3) explore the relationship between parents' physical and psychological symptoms with program outcomes.
Design: quasi-experimental two-group design employing both within- and between-subjects analyses to examine change over time and change relative to historical controls. Parents participated in five telephone-delivered and fully manualized behavioral intervention sessions at two-week intervals, delivered by trained nurses. Behavioral assessments were obtained at baseline and at three months on parents' depressed mood, anxiety, parenting skills, parenting self-efficacy, and symptom distress as well as children's behavioral-emotional adjustment (internalizing, externalizing, and anxiety/depression).
Subjects: Parents diagnosed with advanced or metastatic cancer and receiving noncurative treatment were eligible for the trial provided they had one or more children aged 5-17 living at home, were able to read, write, and speak English, and were not enrolled in a hospice program.
Results: Of those enrolled, 62% completed all intervention sessions and post-intervention assessments. Within-group analyses showed significant improvements in parents' self-efficacy in helping their children manage pressures from the parent's cancer; parents' skills to elicit children's cancer-related concerns; and parents' skills to help their children cope with the cancer. Between-group analyses revealed comparable improvements with historical controls on parents' anxiety, depressed mood, self-efficacy, parenting skills, and children's behavioral-emotional adjustment.
Conclusion: The EC-PC parenting program shows promise in significantly improving parents' skills and confidence in supporting their child about the cancer. Further testing of the program is warranted.
The opt-out system (or presumed consent) for end-of-life organ donation is being widely adopted in the United Kingdom. Since presumed consent for organ donation applies only to adults, commentators have recommended the implementation of routine parental request and integration of organ donation in the end-of-life care of children to increase the donor pool and the supply of transplantable organs. The empirical data for this recommendation originated from a survey of parents of deceased children with severe congenital and acquired brain injuries. The demographics of the surveyed parents were not representative of the diverse ethnic and religious affiliations of British society. Here, it is argued that there are unresolved medical, legal, cultural and religious challenges to the routine integration of end-of-life organ donation that can result in harmful consequences for children and parents. To address these challenges: (1) paediatric practice guidelines should be updated to incorporate new advances in the diagnosis and the treatment of severe brain injuries to eliminate potential clinical errors from premature treatment discontinuation and/or incorrect diagnosis of brain(stem) death and (2) a broad societal debate on the legal, cultural and religious consequences of routine integration of end-of-life organ donation in children.
L’euthanasie des patients mineurs est autorisée en Belgique depuis 2014. Selon les critères de la loi, le mineur d’âge atteint d’une maladie incurable sévère et dans un état de souffrance physique inapaisable doit faire lui-même la demande d’euthanasie même si un consentement parental est requis. La loi belge ne prévoit pas de limite d’âge mais l’enfant qui demande l’euthanasie doit être capable de discernement. Le débat éthique de l’euthanasie des patients mineurs interroge les principes d’autonomie, de bienfaisance, de non malfaisance et de justice.
L’auteur présente sa réflexion personnelle sur l’euthanasie en Belgique et sur son extension aux enfants. En Belgique, un patient adulte peut demander depuis 2002 et à certaines conditions une assistance médicale au décès dénommée euthanasie. Les personnes mineures peuvent faire une démarche similaire depuis 2014. L’euthanasie ne se résume pas à un acte létal. Elle est la conclusion d’un long processus d’accompagnement et d’écoute du malade. La voix du malade devient prépondérante : la loi a permis au malade de rester le sujet et l’acteur de sa vie, y compris quand celle-ci entre dans sa phase terminale. Elle ouvre un espace de discussion et d’information préalable pour permettre aux deux protagonistes, malade et médecin, de rechercher la piste la meilleure à suivre. En pratique, l’euthanasie est un acte qui est le résultat d’une concertation transparente entre le malade et son médecin partagée avec la famille et l’équipe soignante.
Dans un contexte mondial où les disparités d’accès à la santé sont flagrantes et où l’accès aux opiacés et à la prise en charge palliative demeure largement inexistant, des professionnels de la santé s’engagent pour améliorer l’accès aux soins palliatifs pédiatriques. Sollicitée par des partenaires et disposant d’une expertise forte sur la thématique des soins palliatifs pédiatriques au travers de ses collaborateurs, l’organisation non gouvernementale Médecins du monde-Suisse a lancé fin 2014 un programme pour en favoriser l’accès dans quatre contextes : à Kinshasa en République démocratique du Congo, à Yaoundé au Cameroun, à Lomé au Togo et à Managua au Nicaragua. Le projet vise à renforcer des initiatives locales en soins palliatifs pédiatriques, contribuer à la pérennisation des offres de soins et favoriser des échanges au sein d’un réseau de professionnels aussi bien du nord que du sud tout en impliquant les institutions hospitalières et ministérielles.
La mort d’un d’enfant provoque chez les parents une douleur incommensurable. À travers le témoignage d’une mère endeuillée, nous suivrons le long travail de séparation permettant d’atténuer cette souffrance. Nous verrons comment la théorie classique sur le deuil, élaborée par Freud, ne peut éclairer de façon satisfaisante la spécificité du deuil d’enfant.
L’inclusion dans les essais précoces provoque de nombreux questionnements d’un point de vue pratique, mais aussi éthique. L’objectif de ce travail est de montrer que ces enjeux dépassent largement la simple ouverture d’un essai et l’inclusion d’un enfant dont la pathologie correspond aux critères.
Trois caractéristiques des soins palliatifs pédiatriques sont susceptibles de fragiliser les soignants. Il s’agit du processus complexe d’identification à l’enfant, de la confrontation avec la mort d’un enfant et enfin de l’enjeu lié à la triade enfant/parents/soignant pouvant conduire à l’épuisement professionnel. Quelques possibilités pour prévenir ces phénomènes sont étudiés.
AIDS has devastated communities across southern Africa, leaving many children orphaned. Grandmothers are considered ideal caregivers because of cultural expectations of intergenerational care, and because they have not been decimated by AIDS to the same extent as younger adults. However, these grandmothers, who currently carry the majority of the burden of care for AIDS orphans, are themselves aging and dying. I argue here that in Lesotho, the caregiving demanded of grandmothers late into their lives not only alters kin relations for the living but has increasingly made a “good” death unachievable for elderly caregivers.
Pathfinders is a 10-session program developed in a community setting to creatively address the diverse needs of bereaved children and families, prevent complications of grief and trauma, and promote healthy adaptation. It is an accessible, grief-focused and trauma-informed family systems model that is theory-driven, research-informed, and grounded in practice-based evidence. Pathfinders incorporates principles central to narrative approaches, with a focus on restorative processes for helping children and families stay on track developmentally. This article outlines the structure, process, and content of Pathfinders, including examples of creative interventions used within the program.
Interventions for bereaved children and families range from supportive counseling, designed to promote social connectedness and expression of feelings and thoughts about the deceased, to intensive trauma/grief-specific therapy, designed to ameliorate symptoms of posttraumatic stress disorder (PTSD) and depression. That said, professionals have few brief assessment instruments to match response and functioning to appropriate interventions. To expedite the screening and referral process for bereaved families, Brown, Goodman, and Swiecicki (2008) developed the PTSD and Depression Screener for Bereaved Youth, a 19-item measure of bereavement-related history and symptoms of PTSD and depression. The current study is a psychometric evaluation of the Screener for Bereaved Youth. Data were collected from 284 bereaved children, 6–17 years of age (M = 12.4; SD = 2.9). A factor analysis revealed distinct subscales for PTSD (eight items) and depression (four items). The PTSD and depression subscales showed both concurrent and discriminant validity. Endorsement of four items on either subscale was associated with meeting full criteria on more extensive measures of PTSD and depression. These findings are discussed with specific consideration to the multiple systems in which the measure could be used and applications to clinical services.
IMPORTANCE: Pregnancy loss and infant death are unexpected, traumatic, life-changing events. The role of occupational therapy practitioners in treating this population is not well defined.
OBJECTIVE: To describe the outcomes of an occupation-based residential retreat for women who have experienced pregnancy or infant loss.
DESIGN: Program evaluation.
SETTING: Seven residential retreats for bereaved mothers.
PARTICIPANTS: One hundred forty-one women who experienced perinatal loss.
INTERVENTION: Residential retreats that were held in natural settings and included occupation-based activities such as group discussions, yoga, meditation, crafts, and rituals to facilitate grieving and healing processes after perinatal loss.
OUTCOMES AND MEASURES: The Beck Depression Inventory, PTSD Checklist-Civilian Version, Self-Compassion Scale, and Multidimensional Scale of Perceived Social Support were collected pre- and postretreat.
RESULTS: Statistically significant improvements were seen in women's depression, trauma, self-compassion, and perceived social support from pre- to postretreat.
CONCLUSIONS AND RELEVANCE: At present, occupational therapy practitioners support this population primarily by providing referrals and information about local resources. However, as occupational therapy practice in primary care settings grows, so too do possibilities for the development of occupational therapy-related interventions to support maternal mental health.
WHAT THIS ARTICLE ADDS: This article provides preliminary support for occupation-based retreats as a treatment for improving maternal mental health after perinatal loss.
OBJECTIVE: The death of a child is a traumatic stressor that takes a toll on the health of parents. This study examined long-term impacts of the death of a child on the risk of early mortality in bereaved parents. In a follow-up analysis, a twin subsample was analyzed to examine potential genetic confounding.
METHOD: We analyzed data from the Midlife in the United States (MIDUS) study. The primary sample consists of two groups of MIDUS 2 participants (2004–06); (1) parents who experienced the death of a child prior to MIDUS 2 (n = 451) and (2) comparison parents who had not experienced death of any children (n = 1804) (mean age = 63). We also analyzed 52 twin pairs in which one twin experienced the death of a child and 271 twin pairs in which both twins had all living children. Mortality status of parents was assessed in 2017.
RESULTS: Parents who had experienced the death of a child had a 32% higher likelihood of early mortality (defined as dying earlier than life expectancy) than their peers who did not have any deceased children, and they were more likely to die of heart disease. Analyses of the twin subsample revealed significantly lower concordance for early mortality among the pairs with a bereaved twin than among control twins, consistent with non-genetic effects.
CONCLUSIONS: The findings suggest that the death of a child has lasting impacts on the risk of early mortality in bereaved parents. This study provides the first U.S. estimate of bereavement effects on mortality extending through the parents' full life course, with significant public health implications. In addition, analysis of concordance of early death rates in the twin subsample suggests the impact on mortality of parental bereavement, net of genetic factors.
BACKGROUND: Research is needed to improve care and diminish suffering for children with life-limiting illnesses and their parents. However, there are doubts about whether it is possible to conduct paediatric end of life research safely and ethically, as it may unduly burden or inadvertently harm participants.
AIM: To compare and evaluate responses from participants to the assessments of burdens and benefits that were conducted at two timepoints during a phenomenological study that investigated parents' experiences of having a child with life-limiting cancer participate in a Phase I clinical trial.
DISCUSSION: Parents reported that participating in the study was beneficial and resulted in minimal burden or distress. The assessment of benefits and burdens at the first timepoint appeared sufficient to understand participants' experiences.
CONCLUSION: This study adds to the evidence that research may be safely and effectively conducted with parents of children who are deceased or have life-limiting illnesses. Further research is needed to evaluate the most effective timing of assessments of the burdens and benefits of their participation in research.
IMPLICATIONS FOR PRACTICE: It is important when conducting research with people with life-limiting illnesses or their family members to assess the burdens and benefits of their participation, to understand their experiences and assist in its conduct.
BACKGROUND: Being terminally ill affects not only the life of patients but also that of their loved ones. Dyads of adult children and their parents at the end of life may face specific challenges with regard to their relationship and interactions that need to be further examined.
AIM: The aim was to identify, describe and summarise available evidence on adult child-parent interaction and psychosocial support needs at the end of life. Research gaps in the existing literature are disclosed and recommendations for future research are presented.
DESIGN: A type 4 scoping review according to Arksey and O'Malley's (2005) methodological framework was conducted. The review includes studies regardless of study design and provides a descriptive account of foci of available research.
DATA SOURCES: The PubMed, PsycINFO, CINAHL, Google Scholar and Web of Science databases were searched from inception to 16 August 2018. An additional hand search was conducted. A highly sensitive search strategy was employed to cover all potentially relevant results.
RESULTS: The authors screened 1832 records by title and abstract, retrieved 216 full-text articles and included 15 studies from the database search. One study was identified by way of hand search. The review identified six major themes: (1) adult child-parent relationship, (2) adult child-parent communication, (3) involvement in caregiving, (4) benefit and burden of caregiving, (5) coping strategies and (6) support and information for caregivers.
CONCLUSIONS: The scoping review accentuates the paucity of studies that address both patients' and their parent/adult child caregivers' relationship, interaction and psychosocial support needs.
This qualitative study asked 70 mothers and 26 fathers 3 open-ended questions on what they wish they had and had not done and on coping 2, 4, 6, and 13 months after their infant’s/child’s neonatal intensive care unit/pediatric intensive care unit/emergency department death. Mothers wished they spent more time with the child, chosen different treatments, advocated for care changes, and allowed the child his or her wishes. Fathers wished they had spent more time with the child and gotten care earlier. Mothers wished they had not agreed to child’s surgery/treatment, taken her own actions (self-blame), and left the hospital before the death. Fathers wished they had not been so hard on the child, agreed with doctors/treatment, and taken own actions (self-blame). Religious activities, caring for herself, and talking about/with the deceased child were the most frequent mothers’ coping strategies; those of the fathers were caring for self and religious activities. Both mothers and fathers wished they had spent more time with their child and had not agreed to surgery/treatments. The most frequent coping was caring for themselves, likely to care for the family and retain employment. Nurses must be sensitive to parents’ need for time with their infant/child before and after death and to receive information on child’s treatments at levels and in languages they understand.
This study explored the bereavement experience of mothers after losing a child to cancer in Korea, using photovoice. The mothers took photos reflecting five subject areas they selected: (a) if I had one more day with my child, (b) memories with my child, (c) dreaming of my child’s healthy future, (d) what gave me strength, and (e) fulfilling my child’s wishes for the future. The findings show that mothers who lost a child to cancer need bereavement care to promote well-being. This study can help pediatric oncology providers develop bereavement interventions that address parental grief and improve quality of life.