Pediatric cancer has experienced significant improvement in overall survival rates over the past several decades. Despite this progress, however, it remains the leading cause of death from disease beyond infancy in children. Among the children and adolescents that survive their cancer diagnosis, significant symptom burden and toxicities of therapy are often experienced. The evidence presented affords great insight in to the current empirical support for pediatric palliative care involvement, current utilization of palliative care services in the care of children with cancer and their families, and barriers that have been identified to date. Positive trends toward increased, appropriate integration of palliative care services in the care of children with cancer and their families have been observed. Continued research, advocacy, and education are necessary to optimize the care of this vulnerable population of patients and their families.
Palliative care is patient- and family-centered care that enhances quality of life throughout the illness trajectory and can ease the symptoms, discomfort, and stress for children living with life-threatening conditions and their families. This paper aims to increase nurses' and other healthcare providers' awareness of selected recent research initiatives aimed at enhancing life and decreasing suffering for these children and their families. Topics were selected based on identified gaps in the pediatric palliative care literature. Published articles and authors' ongoing research were used to describe selected components of pediatric palliative nursing care including (I) examples of interventions (legacy and animal-assisted interventions); (II) international studies (parent-sibling bereavement, continuing bonds in Ecuador, and circumstances surrounding deaths in Honduras); (III) recruitment methods; (IV) communication among pediatric patients, their parents, and the healthcare team; (V) training in pediatric palliative care; (VI) nursing education; and (VII) nurses' role in supporting the community. Nurses are in ideal roles to provide pediatric palliative care at the bedside, serve as leaders to advance the science of pediatric palliative care, and support the community.
Context: Although access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD).
Objectives: The objective of this study was to examine features of subspecialty PPC involvement for children with AHD.
Methods: This is a retrospective single-institution medical record review of patients with a primary diagnosis of AHD for whom the PPC team was initially consulted between 2011 and 2016.
Results: Among 201 patients, 87% had congenital/structural heart disease, the remainder having acquired/nonstructural heart disease. Median age at initial PPC consultation was 7.7 months (range 1 day-28.8 years). Of the 92 patients who were alive at data collection, 73% had received initial consultation over one year before. Most common indications for consultation were goals of care (80%) and psychosocial support (54%). At initial consultation, most families (67%) expressed that their primary goal was for their child to live as long and as comfortably as possible. Among deceased patients (n = 109), median time from initial consultation to death was 33 days (range 1 day-3.6 years), and children whose families expressed that their primary goal was for their child to live as comfortably as possible were less likely to die in the intensive care unit (P = 0.03) and more likely to die in the setting of comfort care or withdrawal of life-sustaining interventions (P = 0.008).
Conclusion: PPC involvement for children with AHD focuses on goals of care and psychosocial support. Findings suggest that PPC involvement at end of life supports goal-concordant care. Further research is needed to clarify the impact of PPC on patient outcomes.
Children receiving palliative care services are held within the context of a family and often within multiple-generational arms. The purpose of this case series paper is to recognize grandparents' roles in their family system from a personal, cultural, and anthropological perspective; to explore emotions and experiences as applies to grandparents of children receiving palliative care; and to provide tangible insight into caring well for families across the generational arc.
The death of one’s only child in post-reproductive age (in Chinese, shidu) is a traumatic event that has specific cultural implications in China. This study investigates the experience of a changed life and emerging challenges amongst Chinese shidu parents. Thematic analysis of 36 interviews revealed four main life consequences following shidu: impairment of psychological and physical health, weakening of social networks and interactions, loss of meaning in life, and lack of care and security. We suggest that health monitoring and mental health intervention, adequate social and community support, and improved social security are the critical needs in this vulnerable group.
Enduring the death of a family member during emerging adulthood is associated with intense grief. In total, 15 adults between the ages of 18–32 were interviewed about their experiences. Results indicated emerging adults experience a range of mixed emotions after losing a parent, face unique challenges related to their developmental stage, and tend to be resilient moving forward. Emerging adults need opportunities to engage with others experiencing grief related to parental death and may benefit from specialized support groups that address the developmental challenges inherent among this population.
Research on the association between complicated grief (CG), hope, and posttraumatic growth (PTG) among bereaved youth is limited. Measures of CG, depression, hope, and PTG were completed by 85 youth (aged 7–18 years). Results indicated a strong positive relationship between CG and depressive symptoms, an inverse relationship between hope and depressive symptoms, and a moderate positive relationship between hope and PTG. There was no significant association between CG and hope or between CG and PTG. Higher levels of CG and lower levels of hope independently predicted greater depressive symptoms, but PTG did not. Results have implications for assessing positive outcomes in bereaved youth.
Aim: We explored physicians' experiences of communicating with families when their child had cancer and a cure was no longer an option, by focusing on barriers and facilitating factors.
Methods: Physicians from the six cancer centres in Sweden took part in focus group discussions from December 2017 and May 2018 and the data were analysed using qualitative content analysis. Focus groups enabled us to gather individual and shared perspectives.
Results: The 35 physicians (20 male) had a mean age of 47 (range 31-74) and a mean of 11 years' experience in oncology, ranging from under one year to 43 years. They reported communication challenges when a cure was not possible, namely: emotional and mental drain, lack of mutual understanding and uncertainty about communication skills. They also reported facilitating factors: flexibility in complex conversations, the child's position in the conversations, continuity and trusting relationships, support from colleagues and having discussed the potentially life-threatening nature of cancer from the very start of treatment.
Conclusion: Physicians working in paediatric oncology perceived challenges and facilitating factors in their communication with families when a cure was not an option. Training to overcome communication issues could support the early integration of palliative care and curative treatment.
Objectives: Around the world, the PICU is one of the most common sites for hospitalized children to die. Although ensuring the best possible care experience for these children and their families is important, clear recommendations for end-of-life and bereavement care, arising from the parents themselves, remain limited within current literature. This report aims to describe bereaved parents' recommendations for improvements in end-of-life care and bereavement follow-up when a child dies in intensive care.
Design: Thematic analysis of incidental data from a larger grounded theory study.
Setting: Four Australian PICUs.
Subjects: Twenty-six bereaved parents participated in audio-recorded, semi-structured interviews in 2015-2016. Interviews explored their experiences of having a child die in intensive care and their experiences of end-of-life care and bereavement follow-up. Data pertaining to this report were analyzed via thematic analysis.
Measurements and main results: Bereaved parents identified several areas for care delivery and improvement across three time periods: during hospitalization; during the dying phase; and during bereavement. During hospitalization, parents' recommendations focused on improved communication, changes to the physical environment, better self-care resources, and provision of family support. During the dying phase, parents suggested private, demedicalized rooms, familiar staff members, and support to leave the hospital. Recommendations for care after death focused mainly on the provision of ongoing support from the hospital or local bereavement services, as well as improved information delivery.
Conclusions: Findings from this study offer many concrete recommendations for improvements in care both during and after a child's death. These recommendations range from simple practice changes to larger organizational modifications, offering many potential avenues for change and improvement both on an individual healthcare provider level and within individual PICUs.
Each year, more than 500,000 children in the United States cope with life-threatening conditions. Many are hospitalized for long periods for curative treatment, and some remain in the hospital for end-of-life care. Long inpatient stays lead to tremendous physical and emotional stress for both patients and their families, and the management of the burden associated with these periods may be improved by support provided by a comprehensive pediatric palliative care team. The team has a holistic approach, coordinates many interdisciplinary services, and addresses the physical, emotional, social, and spiritual issues that are often present at the end of life.
BACKGROUND: Finding alternative ways to reconnect with the deceased is a common feature of bereavement. However, it is currently unclear how bereaved children or young people establish and develop a "continuing bond" with deceased family members.
AIM: To investigate how bereaved young people continue bonds with deceased family members.
DESIGN: A systematically conducted narrative review was conducted using six electronic databases: CINAHL, Medline, EMBASE, PsycINFO, PubMed, and BNI. Limiters were applied to peer-reviewed articles published in English. Studies were assessed for methodological quality using the Joanna Briggs Institute Critical Appraisal Tools.
RESULTS: Twenty articles were included in the review. Three overarching themes were generated: unintended connections, intended connections, and internalized connections.
CONCLUSION: Bereaved young people establish a sense of connection with deceased family members through various means (e.g., unprovoked or spontaneous reminders, physical mementos, internalized memories). Some connections are unintended and occur spontaneously. However, other young people will specifically seek ways to remember the deceased to provide a sense of enduring connection.
Naissance d'un petit frère ou d'une petite soeur, séparation des parents, deuil d'un grand-parent... les enfants sont souvent confrontés à des situations déstabilisantes ; sans parler de l'actualité qui aborde des sujets sensibles tels que le chômage, le harcèlement, la guerre ou les attentats. Un moyen de trouver les mots Les parents se sentent bien maladroits pour aider leurs enfants à appréhender une réalité qui les bouleverse.
Comment expliquer en rassurant ? Comment trouver le ton juste et les paroles appropriées ? Une méthode pour communiquer sur tous les sujets délicats La psychologue Florence Millot propose de pratiquer ce qu'elle appelle la "méthode des sept portes" . Son principe ? Le dialogue, quel que soit l'âge de l'enfant.
I was getting ready to go to work when my sister called from Winnipeg. “Mom is dying,” she said. Our mother was 90 years old and had experienced a stepwise decline over several months after an episode of urosepsis, complicated by recurring episodes of aspiration pneumonia, Clostridium difficile diarrhea, and a pelvic fracture. She became less interactive with each complication. She had been clear in her instructions to us that she did not want to be kept alive if she was unable to interact meaningfully with those around her. We communicated to her clinicians that she was not to be resuscitated in the event of cardiopulmonary arrest. A few weeks after that, we moved her to a skilled nursing facility, understanding that it was inevitable that she would have further episodes of aspiration. A week later, she developed a fever and was given oral antibiotics for several days. A week after completing the course of antibiotics, she developed a fever again, so the antibiotics were restarted.
OBJECTIVE: To describe children's anxiety, depression, behaviors, and school performance at 2-13 months after sibling neonatal/pediatric intensive care unit (NICU/PICU) or emergency department (ED) death and compare these outcomes by child age, sex, race/ethnicity, whether the child saw their sibling in the NICU/PICU/ED, and attended the sibling's funeral.
STUDY DESIGN: Children in 71 families were recruited for this longitudinal study from 4 children's hospitals and 14 other Florida hospitals. Children rated anxiety (Spence Children's Anxiety Scale) and depression (Children's Depression Inventory); parents rated child behaviors (Child Behavior Checklist) and reported school performance (detentions, suspensions, requested parent-teacher meetings) at 2, 4, 6, and 13 months post-sibling death. Analyses included repeated measures-ANOVA, t-tests, and 1-way ANOVA.
RESULTS: In total, 132 children and 96 parents participated. More children were female (58%), black (50%), and school-age (72%). Of the children, 43% had elevated anxiety and 6% had elevated depression over 13 months post-sibling death. Child-rated anxiety was higher for girls and black vs white children. Child-rated anxiety and depression were lower if they saw their sibling in the NICU/PICU/ED before and/or after the death, and/or attended the funeral. Teens were more withdrawn than school-age children at all time points. Children who did not see their deceased sibling in the NICU/PICU/ED after death had more requests for parent-teacher conferences.
CONCLUSIONS: Children's anxiety was more common than depression, especially in girls and black children. Children who saw their siblings in the NICU/PICU/ED before/after death and/or attended funeral services had lower anxiety and depression over the first 13 months after sibling death.
Most people avoid talking about death with children even when required, as they are unsure at what age children start understanding the concept of death. Although this question has been researched in the west, it has not been answered in the Indian context. Therefore, this study was conducted in India with 25 children (14 females, 11 males; 3-5 years), using play and joint story construction method, along with semistructured interviews. Results indicated that majority of the children understood that everyone has to die, including significant people like their own parents (i.e., universality) and also, many children understood that death is final (i.e., irreversibility). However, only few children understood that all cognitive/behavioral functions cease at death (i.e., nonfunctionality). In conclusion, only a small proportion of preschoolers seems to have had a mature concept of death.
The study was to describe the essence of the lived experience of parents with a child with incurable cancer at the end of life (EOL). A descriptive phenomenological study was conducted with ten parents of children with incurable cancer in a medical centre in Taiwan. Data were collected from in-depth interviews and were analysed according to the method of Giorgi. Two major themes emerged: (a) immersion in the struggling and suffering, which included conflicts and arguments, witnessing their child suffering, denying their child being at EOL and waiting for a miracle; and (b) acceptance of death, which included an end to suffering, living in the moment, discussion of death and letting go. Parents had difficulty adapting to a palliative care perspective due to their misconception that this meant giving up on their child. In addition, religion and belief played varied and important roles in the lived experience of these parents with a child with incurable cancer. Healthcare providers must address the core value of palliative care and help parents accept the reality of their child's situation at an earlier stage in order to provide a better quality of life for the child.
While bereavement camps serve as a support for children, this study examines a therapeutic recreation-based camp for families who have lost a child. The study triangulated documents, researcher reflection, and staff interviews to highlight the themes of Searching & Finding, Getting to Know, Finding the Balance, and Joining. Developing opportunistically through internal and external factors, the camp's evolution represents a closing of the loop, from supporting families of living children to also supporting the families of children who have died. Understanding the camp's evolution may facilitate other programs by highlighting the challenges in developing the program and the lessons learned.
Though the adjustment of bereaved children is increasingly investigated through quantitative studies, their intimate representations regarding the loss of their parent remain unknown. This qualitative study aims at exploring how they give meaning to this experience. Nondirective interviews with bereaved children were conducted and submitted to an interpretative phenomenological analysis. Fourteen children (8 boys, 6 girls, mean age = 8.5 years) were recruited. Seven major themes depicting their grief experience were identified. The importance of the surviving parent is critically highlighted. Findings suggest that the remaining parent could become a fundamental actor in providing grief support for the bereaved children.
This article investigates children's views on providing peer support to bereaved children. The data (pre- and postinterviews and written documents) come from an action research study of a teacher-researcher and her 16 children aged 10-11 years old. Analysis of the data shows children's ideas on supporting a bereaved child and how this support should be provided, taking into consideration various factors such as the relationship with the bereaved and the role of memories. The paper emphasizes that children should have structured opportunities across the whole-school curriculum to learn how loss affects people's lives to support themselves and others.
My youngest daughter, Ruthie, died abruptly in her sleep at the age of 29. She had married ten years ago and lived far away, in central Mexico, where it was hard to get to her, and therefore all too easy to keep telling myself she was going to be all right, even when things that were happening to her were disturbing. She had been having small, partial-brain seizures for some months, which she had been told were a result of cutting back on alcohol and she was veering somewhat erratically on and off her anti-seizure medication because it often made her too sleepy to function.
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