A Spiritual Prescription to Bereaved Parents of Children Died Due to Coronavirus Disease 2019
Bereavement; Coronavirus Disease 2019; Spiritual Care; Bereavement; Coronavirus 19; Parent; Child; Child Death; Dying; Editorial; Financial Management; Grief; Healing; Health Care Personnel; Hopelessness; Human; Life History; Medical Care; Palliative Therapy; Psychosocial Care; Religion; Sudden Cardiac Death
Çaksen H
Journal of Child Science
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1055/s-0042-1757146" target="_blank" rel="noreferrer noopener">10.1055/s-0042-1757146</a>
Becoming a Team: The Nature of the Parent-Healthcare Provider Relationship when a Child is Dying in the Pediatric Intensive Care Unit
Child death; Parent; intensive care; Bereavement; Child; Intensive Care; Intensive Care Units; Only Child; Pediatric; Pediatric intensive care unit; Grounded theory; child; Nurse; Relationship
PURPOSE: To explore bereaved parents' perspectives of parent and staff roles in the pediatric intensive care unit when their child was dying, and their relationships with healthcare staff during this time. DESIGN AND METHODS: Constructivist grounded theory was used to undertake this study. Semi-structured interviewers were conducted with 26 bereaved parents recruited from four Australian pediatric intensive care units. The constant comparative method, coupled with open, focused, and theoretical coding were used for data analysis. RESULTS: Becoming a team explores the changes that occurred to the parent-healthcare provider relationship when parents realized their child was dying and attempted to become part of their child's care team. When the focus of care changed from 'life-saving' to 'end-of-life', parents' perspectives and desires of their and the healthcare providers' roles changed. Parents' attempted to reconstruct their roles to match their changing perspectives, which may or may not have been successful, depending on their ability to successfully negotiate these roles with healthcare providers. CONCLUSIONS: Findings offer insights into parental understandings of both the parental and healthcare provider roles for parents of dying children in intensive care, and the ways in which the parent-healthcare provider relationships can influence and be influenced by changes to these roles. PRACTICE IMPLICATIONS: Successful parent-healthcare provider relationships require an understanding of the parental and healthcare provider role from the parents' perspective. The meanings of the parental and healthcare provider roles should be explored with parents of dying children, and supported as much as possible to enable the development of a collaborative relationship.
Butler AE; Hall H; Copnell B
Journal of Pediatric Nursing
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.pedn.2018.02.002" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2018.02.002</a>
Belonging to a Community of Care: Mothers' Experiences of Online Peer Support Groups for Parents Having Lost a Child with Congenital Heart Defects
Child death; mother grief; peer support; parent support
The aim was to study mothers' experiences of online peer support groups after the death of a child. Participants (N = 8) were recruited through a newsletter for the Swedish association for families/children with heart defects, and two closed support groups on Facebook (900 and 100 members) and interviewed by telephone. Transcripts were analyzed with qualitative content analysis. The groups were available around the clock, regardless of support need, and mothers joined both to receive and provide support. Participation in online peer support groups may provide a sense of belonging to a caring community and serve as a valuable complement to healthcare.
Klarare A; Carlsson T; Mattsson E
Death Studies
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/07481187.2020.1850548" target="_blank" rel="noreferrer noopener">10.1080/07481187.2020.1850548</a>
Bereavement care to minimize bereaved parents' suffering in their lifelong journey towards healing
Child death; Palliative care; Parental bereavement; Suffering
This article presents select findings from an interpretive phenomenological study which aimed to describe the lived experience of parental bereavement. Six parents, each of whom experienced the death of a child due to cancer at least one year prior, participated in conversational interviews to share what it has been like for them since their child's death. Heideggerian (1962) phenomenology provided the philosophical underpinnings of the study, while van Manen's (1997) phenomenological method guided data collection and analysis. From this methodological approach, a structure of the meaning of parental bereavement experience was revealed. Profound suffering emerged as one essential theme. Pertinent findings related to this theme are discussed. Parents share ways others might minimize their suffering and provide support in their lifelong journey towards healing. Findings will enhance nurses' practice of providing bereavement care, which is an expectation of quality palliative care.
Denhup C
Applied Nursing Research
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.apnr.2019.151205" target="_blank" rel="noreferrer noopener">10.1016/j.apnr.2019.151205</a>
Bereavement support effectiveness for parents of infants and children: a systematic review
bereavement; child death; grief; neonates
OBJECTIVES: This systematic review aims to assess the effectiveness of bereavement support interventions (BSIs) for parents of an infant or a child who has died from a medical condition or in unforeseen circumstances. METHODS: A systematic search of MEDLINE, PsycINFO, Embase and CINAHL (1980 to January 2018) was performed to identify studies investigating BSIs for the parents of children who died between the ages of 24 weeks gestation and 30 years. Due to significant clinical and methodological heterogeneity between studies, a narrative synthesis was performed. RESULTS: The database searches returned 24 550 records, with a further 6 identified through other sources. Of these, eight studies, reported in nine papers, met the inclusion criteria. Most studies were conducted in the USA (n=5) and in perinatal/neonatal deaths (n=6). Five of the included studies were randomised controlled trials and three were non-randomised comparative studies. Interventions were delivered to groups, individuals or families. Outcomes of interest were grief, mental health, physical health and 'others'. There were major concerns over the quality of study methods and reporting. Only three of the nine studies reported a significant difference between experimental and control arm participants in any outcomes, despite a total of 23 outcomes being measured. CONCLUSIONS: Poor methodology and reporting of the few studies which have assessed BSIs for parents limit any conclusions on their effectiveness. Agreement on core outcomes and more robust study methodology are required in this neglected area of research.
Ainscough T; Fraser L; Taylor J; Beresford B; Booth A
BMJ Supportive and Palliative Care
2019
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<a href="http://doi.org/10.1136/bmjspcare-2019-001823" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-001823</a>
Black, White, and Hispanic Children's Health and Function 2-13 Months After Sibling Intensive Care Unit Death
child death; sibling bereavement; child bereavement; sibling death
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.
Youngblut J M; Brooten D; Del-Moral T; Cantwell G P; Totapally B; Yoo C
Journal of Pediatrics
2019
<a href="http://doi.org/10.1016/j.jpeds.2019.03.017" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2019.03.017</a>
Child Death And Deterioration Review Group
Child Death; Deterioration; Adoption; Adverse Drug Reaction; Case Study; Cause Of Death; Child; Clinical Article; Controlled Study; Female; Health Care Quality; Human; Learning; Male; Nursing Staff; Palliative Therapy; Perception; Side Effect; Student; Trust
Background In order to improve outcomes for acutely unwell children and young people it is essential to learn from those cases in which children deteriorate and die. In our trust there was no universal record of child deaths or deteriorations and no over view of cases to identify learning, either positive or developmental. Aims The child death and deterioration (CDAD) review group was formed to enable a rapid multi-disciplinary timely review of every child death and unplanned PICU admissions. It allows concerns related to the care or cause of death to be identified, identifies need for more detailed reviews, investigation of adverse events and noting of good practice. Methods Group includes senior doctors and nursing staff, palliative care and risk team. Weekly meetings review cases from the preceding week. Cases are allocated 15 min and the patient's team (ideally medical and nursing) presents. Trainees are encouraged to attend. Cases are discussed, actions generated and graded 1-6 according to standard of care given. We also gather parent/patient feedback regarding unplanned PICU admissions to help provide insight into the perception they have of care provided. Results/measures Over the first year of CDAD, 38 child deaths and 138 unplanned PICU admissions have been reviewed. Various data including demographics, clinical area admitted from, involvement of outreach and palliative care teams, cause of death/deterioration and clinical grading are available (see figures 1-4). Multiple lessons of positive and negative practices as well as action plans are collated and fed back via care groups QuEST (M and M type) meeting. Favourable event reporting forms are completed for individuals and teams who have delivered excellent care. Lessons for practice Good discussion between professional groups and different specialities occurs including consideration of number areas of non technical elements. This has identified system, human interaction, equipment, environment and personal factors (including knowledge) that can be improved as well as a number of areas of good practice for spread and adoption.
Alderton M; Pryde K
Archives Of Disease In Childhood
2017
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10.1136/archdischild-2017-313087.20
Costs of Care and Location of Death in Community-Based Pediatric Palliative Care
adolescent; adult; article; cardiovascular disease/dm [Disease Management]; child; child death; child health care; child health insurance; childhood cancer/dm [Disease Management]; childhood disease/dm [Disease Management]; cohort analysis; community care; community-based; congenital disorder/dm [Disease Management]; cost; dying; family income; female; groups by age; health care cost; health maintenance organization; home care; human; major clinical study; male; medicaid; neuromuscular disease/dm [Disease Management]; newborn disease/dm [Disease Management]; palliative therapy; pediatric palliative care; pediatric patient; prematurity/dm [Disease Management]; race difference; retrospective study
Background: Children with complex chronic conditions (CCCs) are dying at home with increased frequency, yet the number of studies on the financial feasibility of community-based pediatric palliative care is limited. Objective(s): The objectives of this study were to (1) describe characteristics of patients who died in a community-based palliative care program and (2) evaluate cost differences associated with participant characteristics and location of death. Design(s): A retrospective cohort analysis of administrative and electronic medical record data was employed. Setting/Subjects: Children enrolled in the community-based pediatric palliative care program, CompassionNet, who died between 2008 and 2015 were included (N = 224). Measurements: Demographic data, program expense, and paid claims were extracted from an insurance provider database and clinical data from the electronic medical record. Result(s): Sixty-six (29%) of the children were \textless1 year old at death; 80 (36%) were 1-9 years old, and 78 (35%) were 10-22 years old. Malignancy was the most common primary CCC diagnosis for the 158 children/adolescents (n = 89, 56%), whereas neuromuscular conditions (n = 20, 30%) were most frequent for infants. Death at home occurred 21% of the time for infants, 48% for children of ages 1-9 years, and 46% for children of ages 10-22 years. The mean total cost in the final year of life for pediatric patients was significantly related to location of death, a malignancy diagnosis, and participation in Medicaid. The largest estimated difference was between costs of care associated with death at home ($121,111) versus death in the hospital ($200,050). Conclusion(s): Multidisciplinary community-based pediatric palliative care teams provide the opportunity for a home death to be realized as desired. Significant cost differences associated with location of death may support program replication and sustainability. Copyright © 2019, Mary Ann Liebert, Inc.
Chirico J; Donnelly J P; Gupton A; Cromwell P; Miller M; Dawson C; Korones D N
Journal of Palliative Medicine
2019
<a href="http://doi.org/10.1089/jpm.2018.0276" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0276</a>
Digital Storytelling: Families' Search for Meaning after Child Death
bereavement; Child; child death; digital storytelling; Family; meaning-making; Only Child; Social Work
Bereaved families that collectively make meaning of their grief experiences often function better than those that do not, yet most social work bereavement interventions target individuals rather than family units. In this article, authors describe an innovative social work intervention that employs digital storytelling. This is a narrative technique that combines photography, music, and spoken word to help families bereaved by child death make meaning of their loss and envision a future without their deceased child.
Rolbiecki AJ; Washington K; Bitsicas K
Journal of Social Work in End-of-Life & Palliative Care
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/15524256.2017.1387216" target="_blank" rel="noreferrer">10.1080/15524256.2017.1387216</a>
Divorce And Parity Progression Following The Death Of A Child: A Register-based Study From Finland
Child Death; Divorce; Finland; Parity Progression; Register Data
Most studies that have examined whether a child's death influences parental relationship stability have used small-scale data sets and their results are inconclusive. A likely reason is that child loss affects not only the risk of parental separation, but also the risk of having another child. Hence parity progression and separation must be treated as two competing events in relation to child loss. The analysis in this paper used Finnish register data from 1971 to 2003, covering over 100,000 married couples whose durations of both first marriage and parenthood could be observed. We ran parity-specific Cox regressions in which process time started from the birth of each additional child. All marriages included women of childbearing age, none of whom had experienced any child death on entering the analysis. We find that child loss only modestly influences the divorce risk, whereas its effect on the risk of parity progression is considerable.
Finnas F; Rostila M; Saarela J
Population Studies
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1080/00324728.2017.1337918
End of life in patients attended by pediatric palliative care teams: what factors influence the place of death and compliance with family preferences?
child death; childhood mortality; decision making; living will; palliative therapy; place of death; right to die; terminal care; article; child; death toll; female; follow up; home visit; hospital mortality; human; major clinical study; multicenter study; neuromuscular function; Palliative Care; probability; quality of life
Abstract Each year, more than 8 million children worldwide require specialized palliative care, yet there is little evidence available in pediatrics on the characteristics of the end of life in this context. Our aim is to analyze the characteristics of patients who die in the care of specific pediatric palliative care teams. This is ambispective, analytical observational, multicenter study conducted between 1 January and 31 December 2019. Fourteen specific pediatric palliative care teams participated. There are 164 patients, most of them suffering from oncologic, neurologic, and neuromuscular processes. The follow-up time was 2.4 months. The parents voiced preferences in respect of the place of death for 125 of the patients (76.2%). The place of death for 95 patients (57.9%) was at the hospital and 67 (40.9%) was at home. The existence of a palliative care team for over 5 years is more likely to be related to families voicing preferences and their fulfillment. Longer follow-up times by pediatric palliative care teams were observed in families with whom preferences regarding the place of death were discussed and in patients who died at home. Patients who did not receive home visits, when the pediatric palliative care team did not provide full care and when preferences regarding the place of death were not discussed with parents, were more likely to die in the hospital. Conclusions: Advance planning of end-of-life care is one of the most important aspects of pediatric palliative care. The provision of services by the teams and the follow-up time are related to parents’ expressed preferences and the place of death.
Pelaez-Cantero MJ; Morales-Asencio JM; Navarro-Mingorance A; Madrid-Rodriguez A; Tavera-Tolmo A; Escobosa-Sanchez O; Martino-Alba R
European Journal of Pediatrics
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00431-023-04870-z" target="_blank" rel="noreferrer noopener">10.1007/s00431-023-04870-z</a>
End-of-life And Bereavement Care In Pediatric Intensive Care Units
Bereavement Support; Child Death; Family Interaction; Pediatric Intensive Care Unit; Child; Clinical Study; Doctor Patient Relation; Female; Health; Human; Male; Pain; Sound; Terminal Care; United States
Most childhood deaths in the United States occur in hospitals. Pediatric intensive care clinicians must anticipate and effectively treat dying children's pain and suffering and support the psychosocial and spiritual needs of families. These actions may help family members adjust to their loss, particularly bereaved parents who often experience reduced mental and physical health. Candid and compassionate communication is paramount to successful end-of-life (EOL) care as is creating an environment that fosters meaningful family interaction. EOL care in the pediatric intensive care unit is associated with challenging ethical issues, of which clinicians must maintain a sound and working understanding.
Suttle M; Jenkins T L; Tamburro R F
Pediatric Clinics Of North America
2017
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10.1016/j.pcl.2017.06.012
How Do Children With Medical Complexity Die? A Scoping Review
Child; child; cohort analysis; human; chronic disease; quality of life; North America; systematic review; review; health care utilization; personal experience; Only Child; clinical practice; child death; qualitative research; knowledge gap; place of death; chronic patient; biological marker
Introduction: Advancement in medical expertise and technology has led to a growing cohort of children with medical complexity (CMC), who make up a rising proportion of childhood deaths. However, end of life in CMC is poorly understood and little is known about illness trajectories, communication, and decision-making experiences. Objective: To synthesize existing literature and characterize the end-of-life experience in CMC. Methods: A literature search of MEDLINE, CINAHL, PsycINFO, Scopus, Embase, and Google Scholar was conducted up to August 26, 2021. Studies reporting CMC at end of life were included and the extracted data were analyzed descriptively. Findings: Of 1535 publications identified, 23 studies were included. Most studies (15/23 [65%]) were published from 2015 to 2021 and were quantitative in nature (20/23 [87%]). The majority of studies that extracted data from a single country (18/20 [90%]) originated from North America. Study outcomes were categorized into four main domains: (1) place of death (2) health care use (3) interventions received or withdrawn (4) communication, and end-of-life experiences. The weighted percentage of in-hospital CMC deaths was 80.6%. Studies reported that CMC had increased health care use and were subjected to more intensive interventions at end of life compared with non-CMC. Qualitative studies highlighted the following themes: Intrinsic prognostic uncertainty, differing perspectives of the child's quality of life, the chronic illness experience, a desire to have parental expertise acknowledged, surprise at the terminal event, the experience of multiple losses, with an overarching theme of the need for compassionate care at end of life. Conclusions: This scoping review highlighted important characteristics of end of life in CMC, outlining the emerging evidence and knowledge gaps on this topic. A better understanding of this cohort of seriously and chronically ill children would serve to inform clinical practice, service development, and future research.
Chan Ng GM; Bourassa MH; Patel H
Journal of Palliative Medicine
2024
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<a href="http://doi.org/10.1089/jpm.2023.0322" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0322</a>
Little lights: Hospital bereavement photography program
human; child; female; terminal care; controlled study; major clinical study; gestational age; conference abstract; bereavement; nurse practitioner; mourning; child death; volunteer; burn; e-mail; infant; emergency ward; respiratory therapist; light; photography; hospital personnel; Work engagement
Description: Purpose: The Little Lights program is a novel, collaborative, nursing-led bereavement photography service created as a solution to the challenge of providing consistent high-quality bereavement photography for families and their dying infants. Little Lights was created by a multidisciplinary group including a professional photographer, provides professional bereavement photography training to staff, and uses a collaborative model involving photography performed by trained staff and edited by professional photographers to give families beautiful mementos of the brief window of time with their infant. The model provides consistent availability of high quality bereavement photographs validating their baby's life and solidifying the infant's importance within the family (Blood & Cacciatore, 2014). Overcoming the barrier of lack of 24-hour availability of volunteer professional photographers allows increased access for families which aids grieving, mourning, and healing for families who lose their child (Limbo & Kobler, 2010). Subjects: Families with an actively dying or deceased infant regardless of gestational age or physical condition. Women's Center staff who volunteer for training and participation in the program. Design: A nurse led complimentary bereavement photography program designed to function internally by collaboration between hospital staff and volunteer professional photographers. Methods: A multidisciplinary team created training sessions focusing on technical aspects of photography as well as culturally sensitive end-of-life care. Staff participation is voluntary, and a system was created for notification and designation of staff photographers during their normal work hours. A hospital approved form is used to obtain consent and email information from families, the photography session is performed, the images are sent to professional photographers who edit them, and the photographers email the images to the family. Results: Since initiation of the Little Lights program in December 2016 to May 2016, 29 staff from the Women's Center Departments and the Emergency Department have been trained. 21 of those trained were nurses, and other staff trained include physicians, respiratory therapists, nurse practitioners, unit secretaries, and volunteers. During this time period, there have been 55 infant deaths, and all families offered the program have consented to photography. All requested sessions have been successfully performed, converted into encrypted files, edited, and dispersed to families. Parental feedback and the described experience of trained hospital staff have been positive. Quality and process improvement is ongoing. Limitations: A current opportunity for improvement is the time needed for editing and delivery of photographs. The goal is to have photographs delivered to families within 72 hours so that they are available for memorial services; however, the current turn-around time is 2 weeks. Other limitations include a misplacement of equipment, rare challenges of staff availability, and the need for ongoing and new training. Implications for Practice: Little Lights addresses common problems experienced by hospitals attempting to provide bereavement photography. It is a sustainable model for the consistent provision of professional quality, compassionate, complimentary bereavement photography. In addition, the program encourages staff engagement with families during their time of need, participation in the grief process, and may help decrease symptoms of staff burn-out.
Vandergrift PS; Bryan D; Bishop C
Journal of Palliative Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2018.29007.abstract" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.29007.abstract</a>
Local Paediatric Death Data for Barnet 2015- 2021: Which Children are Potentially Eligible for Hospice Care?
Hospice Care; Awareness; Child; Child; child death; clinical article; conference abstract; data analysis; England; Female; Hospice Care; Hospice; hospital admission; hospital mortality; Human; information center; Male; medical history; Only Child; Palliative Therapy; patient referral; prevalence; Retrospective Study; social care; time of death
Background Estimating the local population needs for children's palliative care services can prove challenging. Data has shown that most children die in hospital and not all children with life-limiting conditions (LLC) are known to local hospices at their time of death (Williams & Horsley, 2015). A recent survey conducted by Noah's Ark of North London Paediatric teams, showed that 90% of those surveyed had looked after patients with LLC and not referred them on to their local hospice (Opstad, 2021). Epidemiological studies have sought to estimate the prevalence within local populations (Williams & Horsley, 2015) of children with LLC, looking at NHS digital data (Fraser, Gibson- Smith, Jarvis, et al., 2020. Palliat Med.) from hospital admissions (Health & Social Care Information Centre, 2015). These estimations, however, come with limitations. Aims 1. Identify the causes and locations of child deaths in the local population. 2. Determine which children would have potentially met criteria for hospice referral. Design Records of local death data were analysed, with specific reference to cause and location of death and past medical history which would have made them eligible for hospice care. Results Over the six-year period analysed there were an average of 26 deaths per year from all causes. Between 5 and 18 children were found to meet hospice referral criteria each year (an average of 10 per year). 139 of the 154 total deaths occurred in hospital (90%) from all causes, but 43 (28%) of those deaths were in children with LLC and were expected. Just 19 children (12%) had a planned death at home or in a hospice setting over the sixyear period analysed. Conclusions This data supports the hypothesis from epidemiological studies that there is unmet need within the local population. Some families may choose for their child to die in a hospital, and it is difficult to scrutinise this element of choice in retrospective data analysis. However, there is clearly need for greater awareness amongst paediatric teams and families of the services offered by local hospices.
Opstad H
BMJ Supportive and Palliative Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/spcare-2022-HUNC.80" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.80</a>
Maternal attachment and child death: On adjustment, relationship, and resolution
Child; Death; infant; child death
When an infant dies at the height of the mother-child attachment period, the experience is traumatic and shattering for the mother. Examining successful resolution of this loss requires a distinction between adjustment to the external reality of loss and the nature of the ongoing internal relationship to the representation of the deceased. Resolution may best describe and muted intrapsychic relationship characterized by a flexible and psychologically comfortable stance vis a vis the dynamic memories and representation of the deceased child.
1985
Rubin SS
Omega
1985
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.2190/43lq-43xj-1g7x-7jqp" target="_blank" rel="noreferrer">10.2190/43lq-43xj-1g7x-7jqp</a>
Meaning reconstruction in the experience of parental bereavement
Child; Grief; Family; Parents; Death; Attitude; Role; bereavement; knowledge; mothers; Meaning; mourning; child death
Grounded theory analysis was used to generate an explanation of the phenomenon of meaning reconstruction in the experience of 10 bereaved mothers. The theory that emerged included three phases in the process of meaning reconstruction: discontinuity, disorientation, and adjustment. The participants reinterpreted the meaning structures they had held prior to their child's death in order to give meaning to the death. The nature of the prior meaning structure merged as the core variable. The ability to restore meaning after the death of a child was clearly linked to the prior existence of a meaning structure that could account for and "place" the child's death. The findings suggest that the process of meaning reconstruction is a unique aspect of the grieving experience that cannot be explained by existing theories of grief. Recognition of the complexity of the process has implications for community members and professionals who interact with the bereaved parent.
1994
Braun Mildred J; Berg DH
Death Studies
1994
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1080/07481189408252647" target="_blank" rel="noreferrer">10.1080/07481189408252647</a>
Metaphors that shape parents' perceptions of effective communication with healthcare practitioners following child death: a qualitative UK study
child death; paediatric A&E and ambulatory care; paediatric oncology; paediatric palliative care; parent perspectives
OBJECTIVES: To offer an interpretation of bereaved parents' evaluations of communication with healthcare practitioners (HCPs) surrounding the death of a child. DESIGN: Interpretative qualitative study employing thematic and linguistic analyses of metaphor embedded in interview data. SETTING: England and Scotland. PARTICIPANTS: 24 bereaved parents (21 women, 3 men). METHODS: Participants were recruited through the True Colours Trust website and mailing list, similar UK charities and word of mouth. Following interviews in person or via video-conferencing platforms (Skype/Zoom), transcripts first underwent thematic and subsequently linguistic analyses supported by NVivo. A focused analysis of metaphors used by the parents was undertaken to allow in-depth interpretation of how they conceptualised their experiences. RESULTS: The findings illuminate the ways parents experienced communication with HCPs surrounding the death of a child. Key findings from this study suggest that good communication with HCPs following the death of a child should acknowledge parental identity (and that of their child as an individual) and offer opportunities for them to enact this; taking account their emotional and physical experiences; and accommodate their altered experiences of time. CONCLUSIONS: This study suggests that HCPs when communicating with bereaved parents need to recognise, and seek to comprehend, the ways in which the loss impacts on an individual's identity as a parent, the 'physical' nature of the emotions that can be unleashed and the ways in which the death of a child can alter their metaphorical conceptions of time.
Turner S; Littlemore J; Taylor J; Parr E; Topping AE
BMJ Open
2022
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<a href="http://doi.org/10.1136/bmjopen-2021-054991" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2021-054991</a>
No impact of previous evidence advocating openness to talk to children about their imminent death
Communication; palliative care; child death; imminent death; psychological morbidity
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 (1,2). 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 (3).
Kreicbergs U; Pohlkamp L; Sveen J
Acta Paediatrica
2020
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<a href="http://doi.org/10.1111/apa.15681" target="_blank" rel="noreferrer noopener">10.1111/apa.15681</a>
Parent Grief 1-13 Months After Death In Neonatal And Pediatric Intensive Care Units
Child Death; Father Grief; Grief; Infant Death; Mother Grief
Youngblut JM; Brooten D; Glaze J; Promise T; Yoo C
Journal Of Loss And Trauma
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1080/15325024.2016.1187049
Parent Grief 1-13 Months After Death In Neonatal And Pediatric Intensive Care Units
Child Death; Father Grief; Grief; Infant Death; Mother Grief
OBJECTIVE: Describe changes in mothers' and fathers' grief from 1 to 13 months after infant/child neonatal/pediatric intensive care unit death and identify factors related to their grief. METHODS: Mothers (n = 130) and fathers (n = 52) of 140 children (newborn-18 years) completed the Hogan Grief Reaction Checklist at 1, 3, 6, and 13 months post-death. RESULTS: Grief decreased from 3 to 13 months for mothers and from 3 to 6 months for fathers. Grief was more intense for: mothers of deceased adolescents and mothers whose child was declared brain dead. CONCLUSION: Mothers' and fathers' grief intensity may not coincide, resulting in different needs during the 13 months after infant/child death.
Youngblut JM; Brooten D; Glaze J; Promise T; Yoo C
Journal Of Loss And Trauma
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1080/15325024.2016.1187049
Parent Health and Functioning 13 Months After Infant or Child NICU/PICU Death
NICU; infant death; child death; PICU; parent chronic conditions; parent mental health
BACKGROUND: After a child's death, parents may experience depression, posttraumatic stress disorder (PTSD), and increased risk for cancers, diabetes, psychiatric hospitalization, and suicide. Racial/ethnic differences are unknown. This longitudinal study investigated health and functioning of Hispanic, black, and white parents through 13 months after NICU/PICU death. METHODS: Parents (176 mothers, 73 fathers) of 188 deceased infants/children were recruited from 4 NICUs, 4 PICUs, and state death certificates 2 to 3 weeks after death. Deaths occurred after limiting treatment/withdrawing life support (57%), unsuccessful resuscitation (32%), or brain death (11%). Data on parent physical health (hospitalizations, chronic illness), mental health (depression, PTSD, alcohol use), and functioning (partner status, employment) were collected in the home at 1, 3, 6, and 13 months after death. RESULTS: Mean age for mothers was 32 ± 8, fathers 37 ± 9; 79% were Hispanic or black. Thirteen months after infant/child death, 72% of parents remained partnered, 2 mothers had newly diagnosed cancer, alcohol consumption was below problem drinking levels, parents had 98 hospitalizations (29% stress related) and 132 newly diagnosed chronic health conditions, 35% of mothers and 24% of fathers had clinical depression, and 35% of mothers and 30% of fathers had clinical PTSD. At 6 months after infant/child death, 1 mother attempted suicide. Week 1 after infant/child death, 9% of mothers and 32% of fathers returned to employment; 7 parents took no time off. More Hispanic and black mothers than white mothers had moderate/severe depression at 6 months after infant/child death and PTSD at every time point. CONCLUSIONS: Parents, especially minority mothers, have negative physical and mental health outcomes during the first year after NICU/PICU death.
2013-11
Youngblut JM; Brooten D; Cantwell GP; Del Moral T; Totapally Balagangadhar
Pediatrics
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1542/peds.2013-1194" target="_blank" rel="noreferrer">10.1542/peds.2013-1194</a>
Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care
artificial feeding; concept formation; hydration; Terminal Care; Article; Child care; child death; clinical practice; Controlled Study; decision making; Female; Human; Male; parental attitude; personal experience; priority journal; Qualitative Research; quality of life; Religion; satisfaction
BACKGROUND AND OBJECTIVE: Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under speci fi c circumstances. However, most of the evidence on FANH involves dying adults. There is a paucity of pediatric evidence to guide health care providers' and parents' decision-making around this practice. Objectives were (1) to explore the experiences of bereaved parents when a decision had been made to FANH during EOL care for their child and (2) to describe the perceived quality of death in these children, as reported by their parents. METHODS: This was a qualitative study using in-depth interviews with parents whose children died after a decision to FANH. Parental perceptions about the experience and their child's quality of death were explored. Interviews were audiotaped and transcribed, then data were analyzed by using interpretive description methodology. RESULTS: All parents were satisfi ed with their decision to FANH and believed that their child's death was generally peaceful and comfortable. The child's perceived poor quality of life was central to the decision to FANH, with feeding intolerance often contributing to this perception. Despite overall satisfaction, all parents had doubts and questions about the decision and benefited from ongoing assurances from the clinical team. CONCLUSIONS: FANH in children at the EOL is an acceptable form of palliation for some parents and may contribute to a death that is perceived to be peaceful and comfortable. In situations in which FANH may be a reasonable possibility, physicians should be prepared to introduce the option. Copyright _ 2013 by the American Academy of Pediatrics.
2013
Rapoport A; Shaheed J; Newman C; Rugg M; Steele R
Pediatrics
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2012-1916" target="_blank" rel="noreferrer">10.1542/peds.2012-1916</a>
Parents' Experience Of A Follow-up Meeting After A Child's Death In The Paediatric Intensive Care Unit.
Fundin Intensive Care Nursing Nurses Meetings Intervention Parents & Parenting Studies Interviews Families & Family Life Interdisciplinary Aspects Hospitals
Child Death; Follow-up; Picu; Paediatric Intensive Care; Parent's Experience; Qualitative
OBJECTIVE:
'To identify parents' experience of a follow up meeting and to explore whether the conversation was adequate to meet the needs of parents for a follow-up after their child's death in the Paediatric Intensive Care Unit (PICU).
DESIGN AND SETTING:
Qualitative method utilising semi-structured interviews with six pairs of parents 2-12 weeks after the follow-up conversation. The interviews were held in the parents' homes at their request. Data were analysed using a qualitative, descriptive approach and thematic analysis.
FINDINGS:
Four main themes emerged: (i) the way back to the PICU; (ii) framework; (iii) relations and (iv) closure.
CONCLUSION:
The parents expressed nervousness before the meeting, but were all pleased to have participated in these follow-up meetings. The parents found it meaningful that the follow-up meeting was interdisciplinary, since the parents could have answers to their questions both about treatment and care. It was important that the staff involved in the follow-up meeting were those who had been present through the hospitalisation and at the time of the child's death. Parents experienced the follow-up meeting as being a closure of the course in the PICU, regardless the length of the hospitalisation.
HL Brink
Intensive And Critical Care Nursing
2017
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DOI: 10.1016/j.iccn.2016.06.006
Parents' needs for physician-parent communication in the face of life-threatening illness: Qualitative analysis
childhood disease; interpersonal communication; life threatening illness; parent; personal needs; physical disease; physician; adolescent; article; child; child death; child hospitalization; clinical article; female; health care system; hospice; human; infant; knowledge; law suit; male; malpractice; personal experience; preschool child; qualitative analysis; school child; semi structured interview
Introduction. Parents of a child diagnosed with a life-threatening illness often experience the state of cognitive and emotional disorganization. The key factor determining parents-physicians cooperation is the quality of their relations. That is why physicians should be familiar with conditions that may help or disturb parents to manage this extreme situation. Competent communication leads to more effective treatment as well as fewer medical malpractice claims and lawsuits filed against doctors. Material and methods. The aim of this paper is the description and analysis of the needs of 23 parents whose children were diagnosed with life-threatening illnesses that led to death. The deceased children were treated mainly in hospitals or in hospices. The study was conducted in the period of one up to four years following the death of a child. A semi-structured interview was constructed and used for the purpose of this research. The transcription was analysed according to the rules of Qualitative Content Analysis with applying NVivo 9 software. Results. The results have revealed five categories of parents' needs addressed to physicians: 1) a greater intensity of direct parent-physician contact; 2) experience of doctors' thorough knowledge about the child and their illness; 3) a greater doctors' involvement in the search for the causes of the disease and further treatment; 4) parents' established position in the healthcare system, especially when the treatment lasted for a long time 5) more clear information about the applied treatment and condition of the child. Conclusions. The research indicates that the challenge of communication with parents is not only clear information about the course of a disease, providing facts about functioning of the entire health care system and this is particularly important for the parents whose child has been undergoing a long-term treatment. A physician should emphasise the meaning of palliative care as an integrated system of support. Parents' decision-making about medical treatment on the early stage of an illness may cause too heavy strain to some of them.
Janusz B; Walkiewicz M
Palliative Medicine in Practice
2017
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<a href="http://doi.org/https://journals.viamedica.pl/palliative_medicine_in_practice/article/view/56160/43289" target="_blank" rel="noreferrer noopener">https://journals.viamedica.pl/palliative_medicine_in_practice/article/view/56160/43289</a>
Patterns of paediatric end-of-life care: A chart review across different care settings in Switzerland
terminal care; human; child; female; male; cohort analysis; neurology; newborn; article; neonatology; home care; major clinical study; retrospective study; child care; Switzerland; oncology; resuscitation; medical record review; child death; life sustaining treatment; treatment withdrawal; health care utilization; hospital admission; 103-90-2 (paracetamol); paracetamol; adolescent; infant; intensive care unit; cause of death; length of stay; drug use; cardiology; community care; invasive procedure; narcotic analgesic agent
Background: Paediatric end-of-life care is challenging and requires a high level of professional expertise. It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of disease-specific aspects of paediatric end-of-life care. The aim of this study was to comprehensively describe, explore and compare current practices in paediatric end-of-life care in four distinct diagnostic groups across healthcare settings including all relevant levels of healthcare providers in Switzerland. Methods: In this nationwide retrospective chart review study, data from paediatric patients who died in the years 2011 or 2012 due to a cardiac, neurological or oncological condition, or during the neonatal period were collected in 13 hospitals, two long-term institutions and 10 community-based healthcare service providers throughout Switzerland. Results: Ninety-three (62%) of the 149 reviewed patients died in intensive care units, 78 (84%) of them following withdrawal of life-sustaining treatment. Reliance on invasive medical interventions was prevalent, and the use of medication was high, with a median count of 12 different drugs during the last week of life. Patients experienced an average number of 6.42 symptoms. The prevalence of various types of symptoms differed significantly among the four diagnostic groups. Overall, our study patients stayed in the hospital for a median of six days during their last four weeks of life. Seventy-two patients (48%) stayed at home for at least one day and only half of those received community-based healthcare. Conclusions: The study provides a wide-ranging overview of current end-of-life care practices in a real-life setting of different healthcare providers. The inclusion of patients with all major diagnoses leading to disease- and prematurity-related childhood deaths, as well as comparisons across the diagnostic groups, provides additional insight and understanding for healthcare professionals. The provision of specialised palliative and end-of-life care services in Switzerland, including the capacity of community healthcare services, need to be expanded to meet the specific needs of seriously ill children and their families.
Zimmermann K; Cignacco E; Engberg S; Ramelet AS; von der Weid N; Eskola K; Bergstraesser E; Ansari M; Aebi C; Baer R; Popovic MB; Bernet V; Brazzola P; Bucher HU; Buder R; Cagnazzo S; Dinten B; Dorsaz A; Elmer F; Enriquez R; Fahrni-Nater P; Finkbeiner G; Frey B; Frey U; Greiner J; Hassink RI; Keller S; Kretschmar O; Kroell J; Laubscher B; Leibundgut K; Malaer R; Meyer A; Stuessi C; Nelle M; Neuhaus T; Niggli F; Perrenoud G; Pfammatter JP; Plecko B; Rupf D; Sennhauser F; Stade C; Steinlin M; Stoffel L; Thomas K; Vonarburg C; von Vigier R; Wagner B; Wieland J; Wernz B
BMC Pediatrics
2018
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<a href="http://doi.org/10.1186/s12887-018-1021-2" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1021-2</a>
Rituals At End-of-life.
Nursing; Death; Pregnancy Loss; Child; Family Presence; Care And Treatment; Resuscitation; Perspectives
Ceremonies; Child Death; Deathbed; End Of Life; Perinatal Loss; Rites; Rituals; Sacraments
Understanding the significance of rituals at the end-of-life enables health care professionals to offer meaningful and compassionate interventions that enhance quality of life and support those dying and those who grieve. Rituals contribute to the strength, capacity, and health of providers who cope with death events. Rituals help the living create continuing bonds with those dying, help with coping skills, and allow healthy growth through opportunities for naming, honoring, and memorializing. The display of respect and a nonjudgmental attitude create a space for support, trust, sharing of emotion, empowerment, and quality of care during end-of-life events.
Pace JC; Mobley TS
Nursing Clinics Of North America
2016
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DOI: 10.1016/j.cnur.2016.05.004
Surviving Siblings' Illnesses, Treatments/Health Services over 13 Months after a Sibling's Death
Child death; Children's illnesses; Children's treatments/health services; Sibling bereavement; Sibling death; they have no conflict of interest.
Two million children experience sibling death annually and have problems that require clinical intervention although few receive such help. Effects on surviving siblings' mental health has been well documented, however their physical health has not. This study described surviving siblings' illnesses, treatments/health services at 2, 4, 6, and 13 months post-sibling death. The 132 children (76 girls, 56 boys, M 10.6 years, SD 3.43); 30% Hispanic, 51% Black, 26% White were recruited via hospital ICUs and published obituaries. Using a longitudinal design, parents reported types and numbers of surviving siblings' illnesses, treatments/health services, and dates post-sibling death. Most of the 207 illnesses and 674 treatments/health services occurred in the first 6 months post-sibling death. While girls had more illnesses (131) than boys (76) and Hispanic children had more illnesses than White or Black children, these differences were not statistically significant. Girls accounted for 66% of the treatments/health services and boys 34%. There was no significant difference in treatments/health service use by gender of the children (F = 1.00, p = .32). Hispanic children had significantly more treatments/health service use than Black children (F = 6.81, p = .002). Sibling death affects surviving siblings' physical health. Study data document the importance of monitoring the health, treatments and health service use of surviving siblings especially in the first 6 months after a sibling death, regardless of the child' s gender. On average, Hispanic children had greater health service use, which may warrant greater attention.
Brooten DA; Youngblut J M; Roche RM; Caicedo CL; Page T F
Journal of child and family studies
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s10826-018-1044-1" target="_blank" rel="noreferrer noopener">10.1007/s10826-018-1044-1</a>
The chameleon project: A children's end of life care quality improvement project: Preliminary results
child; child death; human; palliative therapy; controlled study; pediatric intensive care unit; terminal care; bereavement; conference abstract; hospital admission; newborn; questionnaire; documentation; cost control; England; preliminary data; teaching; total quality management
Background As there was no specialist paediatric palliative care team in the region, we made a successful bid to NHS England's Marginal rate Emergency Threshold (MRET) and Readmission Fund for the Chameleon Project1 in 2018. The project has been funded for 12 months to audit and improve children's end of life care across the region. It provides a regional specialist team: consultant paediatrician 2 days a week, clinical nurse specialist 3 days, clinical academic researcher 2 days, network administrator 2 days, 3 paediatricians with expertise in palliative care in each of 3 district general hospitals 0.5 days. Methods The team developed tools to aid identification of children with end of life care needs. These were embedded by weekly attendances by the team at ward rounds and board rounds in the region's hospitals. We also delivered lectures and case based teaching sessions to clinical teams and at regional study days. A bereaved family feedback tool was adapted from ones used by the London Neonatal Network. Children with life limiting conditions who died an expected death in the 12 months of the project were identified from the child death review databases. Numbers of specialist hospital admissions, bed days, and costs were identified. Quality of care will be evaluated from documentation of care plans and post bereavement family feedback questionnaires. Results Compared to the year before the project started, the mean number of non-elective admissions reduced from 2.3 to 1.9; the number of non-elective bed days reduced from 51 to 32; and the number of non-elective bed days on neonatal and paediatric intensive care units reduced from 28 to 20, in the last 12 months of life per child. Quality of care is currently being assessed against NICE Quality Standards QS160.2 Conclusions These preliminary results indicate that a dedicated paediatric palliative care team can reduce admissions and bed days for children in their last year of life. We hope that further analyses will demonstrate improved family experience and cost savings for local NHS providers.
Haynes S; Kelly N; Turnbull J; Griffin H; Connolly A; Dorsett C; Brown J; Wolff A
Archives of Disease in Childhood
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/archdischild-2019-rcpch.456" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2019-rcpch.456</a>
The Emotional Experience of Caring for Children in Pediatric Palliative Care: A Qualitative Study among a Home-Based Interdisciplinary Care Team
care behavior; emotion; palliative therapy; pediatrics; adult; article; burnout; case study; child; child death; collaborative care team; emotional stress; Emotions; female; health personnel attitude; home care; human; job satisfaction; male; Palliative Care; qualitative research; satisfaction; semi structured interview; thematic analysis
The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric palliative home care team. A qualitative case study was conducted, comprising 18 participants. A purposeful sampling technique approach was used including the home-based interdisciplinary pediatric palliative team. Data were collected via semi-structured interviews and researchers' field notes. A thematic analysis was performed. Two themes emerged: (a) changing life for the better, which described how professionals value life more and helping children and families provides compassion satisfaction, which is comforting and explains their dedication to care; (b) adverse effects of work highlighted the emotional burden of caring for children with life-limiting or life-threatening illnesses, which can affect their job satisfaction and may lead to burnout, showing how experiencing in-hospital child deaths with suffering leads professionals to develop an interest in specializing in pediatric palliative care. Our study provides information on possible causes of emotional distress in professionals caring for children with life-threatening illnesses and highlights strategies that can help them to reduce their distress.Copyright © 2023 by the authors.
Rico-Mena P; Gueita-Rodriguez J; Martino-Alba R; Castel-Sanchez M; Palacios-Cena D
Children
2023
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<a href="http://doi.org/10.3390/children10040700" target="_blank" rel="noreferrer noopener">10.3390/children10040700</a>
The most painful estrangement: Death at birth
article; human; social support; palliative therapy; coping; mourning; stillbirth; guilt; depression; emotion; identity; suicide; posttraumatic stress disorder; personal experience; bereavement; avoidance behavior; emotional stress; child death; prevalence; decision making; family history; regret; emotional support; lactation; sadness; fear; continuing education; sorrow; community care; stigma; spontaneous abortion; self concept; shame; loneliness; alienation; complicated grief/dt [Drug Therapy]; family stress; naltrexone/dt [Drug Therapy]; rage; social bonding; traffic accident
More than two million babies a year die during or before birth around the world, evoking grief that is traumatic. Because the psychological, physical, social, and emotional ramifications of grief following a baby's death are so enduring and intense, social support is essential to helping families cope. In particular, emotional acts of caring and judicious use of language are crucial, avoiding the use of the terms that belittle the value of the baby's life and the importance of the baby as part of a family history. Traumatic grief informed continuing education can aid providers in increasing sensitivity to the needs of grieving families and minimize additional trauma and suffering in the aftermath of such loss.
Cacciatore J
Seminars in Perinatology
2024
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<a href="http://doi.org/10.1016/j.semperi.2023.151870" target="_blank" rel="noreferrer noopener">10.1016/j.semperi.2023.151870</a>
The timing and circumstances of the implementation of pediatric palliative care in Hungarian pediatric oncology
child death; parent; family; terminal care; priority journal; psychologist; doctor patient relation; constructive feedback; childhood cancer; cancer palliative therapy; cohort analysis; oncologist; structured interview; human; article; female; male; adult; exploratory research; time to treatment; ambivalence; data analysis software; Hungarian (citizen); Hungary
Despite the continuous improvement of pediatric palliative care, medical professionals still face various barriers regarding its implementation; our aim was to investigate this question in Hungarian pediatric oncology practice. Structured interviews were carried out in person with physicians from the Hungarian Pediatric Oncology Group (n = 22). Codes were generated inductively with the aid of Atlas.ti 6.0 software. Most physicians placed the palliative care discussion at the end of curative treatment (n = 21) and preferred to conduct it in a team setting (n = 18), mainly in the presence of a psychologist. Preparing parents for the child's death can occur during the palliative care discussion (n = 3), in the child's final days/h (n = 6), gradually (n = 10), or never (n = 3). There are words consciously utilized and avoided during this discussion, with the word "death" proving to be the most ambivalent (utilized n = 5, avoided n = 6). Conclusions: There is no widely accepted unified practice among pediatric oncologists concerning the implementation of palliative care in Hungary. Despite the international recommendation, the common practice of timing is still at the end of curative treatment. Physicians rely on multidisciplinary teamwork, where the psychologist's role is the most prominent in this discussion.What is Known:* There is an international consensus that palliative care should commence at the diagnosis of a pediatric malignant disease regardless of illness outcome.* Barriers to the early implementation of palliative care in pediatric oncology involve resource-based and attitudinal factors.What is New:* In Hungary, where pediatric oncologists are sole decision-makers, early implementation of palliative care is rare.* There is a strong preference among physicians for working within a team, while also asserting that presence of team members may decrease the level of intimacy.
Nyiro J; Zorgo S; Eniko F; Hegedus K; Hauser P
European Journal of Pediatrics
2018
<a href="http://doi.org/%2010.1007/s00431-018-3170-6" target="_blank" rel="noreferrer noopener">10.1007/s00431-018-3170-6</a>
Where children die: A retrospective analysis of child death overview panel (CDOP) data
child; child death; female; human; major clinical study; male; palliative therapy; retrospective study; controlled study; hospice; terminal care; conference abstract; ethnic group; ethnicity; newborn; anonymised data; Asian; British citizen; cancer diagnosis; cause of death; chromosome aberration; congenital malformation; data analysis software; gender; mortality rate; strategic planning
Aims There is a statutory requirement to review all child deaths in England. The aim of this study is to collate and evaluate child death data from all Child Death Overview Panels (CDOPs) within a single UK region to inform strategic planning. Methods A retrospective analysis of 3 full years of anonymised data (2013/14 - 2015/16) representing all child deaths (expected and unexpected) collated from all 14 CDOPs in the region. Descriptive analysis was performed using SPSS assessing age (0-17 inclusive), gender, ethnicity, partial postcode, place of death and category of death as assigned following CDOP review. Ethical approval was not required. Missing data was excluded from analysis on a pairwise basis. Results Over the study period there were 1221 deaths, with an average mortality rate of 407 deaths per annum (total child population=1.1 million, 3.5 deaths/10000 children). The major causes of death were perinatal/neonatal events, and chromosomal, genetic and congenital anomalies; Combined these account for 60% (n=712/1183) of the dataset. 'Expected' deaths accounted for 64% (n=730/1149) of all child deaths. Place of death for expected deaths=Hospital deaths: 77% (n=564) Home: 9% (n=67), Hospice: 13% (n=91). When ethnicity data analysed for place of death (excluding neonatal and unexpected deaths), a greater proportion of white British children (n=201) died at home (16%, n=33) or within a hospice (23%, n=47) when compared to Asian children (Home: 12%, n=14; Hospice: 9%, n=10); Chi-squared 15.07, p=0.002. Conclusions Place of Death (PoD), a key quality indicator for end-of-life care, remains within hospital for the majority of children. Both ethnicity and disease type affect PoD, with ethnic minority groups less likely to die at home or hospice. Children with a cancer diagnosis were more likely to die at home, possibly attributable to known availability of a 24 hour/ 7 day outreach care for this group. Local paediatric palliative care services can use the above information to ensure future service developments provide equitable care provision and choices for families. Data limitations include acknowledged individual CDOP panel variations in data collation, including categorisation of cause of death and absence of recording of preferred PoD.
Hartley D; Renton K; Clarkson L; McKeating C; Lyles L; Mayer A
Archives of Disease in Childhood
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/archdischild-2019-rcpch.453" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2019-rcpch.453</a>