A good death in the child with life shortening illness: A qualitative multiple-case study
Child; terminal care; palliative care; death; delivery of health care; caregivers; qualitative research
BACKGROUND: Understanding what makes a 'good death' in the child with life shortening illness is important, as it informs appropriate and effective end-of-life care. Above play, peer contact and opportunities for assent, prior literature review found meeting needs and managing control were critical. The influence of disease types, location of death and palliative care support remains unclear. AIM: Explore how a good death for children can occur in the real-world context and identify factors influencing it. DESIGN: A qualitative multiple-case study. The case was defined as family and professional caregivers of children who died, stratified across disease categories (cancer or non-cancer) and palliative care contact. Data collection included (1) interviews, (2) artefacts, (3) clinical notes. Framework Analysis facilitated in-depth within and cross-case analysis. SETTING/PARTICIPANTS: Singapore health-care context. Respondents included bereaved parents, health and social care providers from hospital, and a community palliative care service. RESULTS: Five cases were constituted, with eight parents and 14 professionals as respondents. Eight common themes were identified, sub-categorised under three domains and interpreted theoretically: (1) Antecedents: Letting go, Acknowledging the child, Closure (2) Determinants: Suffering, Control, Systems and processes (3) Attributes: Comfort, Dying not prolonged. These factors were consistent across all cases, regardless of individual diagnoses, place of care and palliative care access. CONCLUSIONS: Elements that universally influence a good death are revealed within an ecologically sound and holistic conceptual framework. The impact of attitudes among healthcare professionals, and service delivery at systems level highlighted in this study have immediate applications in practice and policy.
Chong PH; Walshe C; Hughes S
Palliative Medicine
2021
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/10.1177/02692163211027700" target="_blank" rel="noreferrer noopener">10.1177/02692163211027700</a>
The conceptual understanding of pediatric palliative care: A Swiss healthcare perspective
article; child; childhood cancer; comfort; death; human; interview; nurse; oncologist; palliative therapy; pediatrics; psychologist; social worker; stigma; Switzerland
Background: Health care providers' perception of pediatric palliative care might negatively influence timely implementation. The aim of the study was to examine understanding of and attitudes towards pediatric palliative care from the perspective of health care providers working in pediatric oncology in Switzerland to promote the timely implementation of pediatric palliative care.
De Clercq E;Rost M; Rakic M; Ansari M; Brazzola P; Wangmo T; Elger B S
BMC Palliative Care
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/10.1186/s12904-019-0438-1" target="_blank" rel="noreferrer noopener">10.1186/s12904-019-0438-1</a>
Neonatologists and neonatal nurses have positive attitudes towards perinatal end-of-life decisions, a nationwide survey
Surveys and Questionnaires; Newborn Infant; Pregnancy; Attitude of Health Personnel; Decision Making; Belgium; Terminal Care; Perinatal death; End-of-life decisions; Death; Termination of pregnancy; Neonatologists; Optimism; Attitude questionnaire; Attitudes of neonatologists and neonatal nurses; Neonatal Nurses
AIM: Perinatal death is often preceded by an end-of-life decision (ELD). Disparate hospital policies, complex legal frameworks and ethically difficult cases make attitudes important. This study investigated attitudes of neonatologists and nurses towards perinatal ELDs. METHODS: A survey was handed out to all neonatologists and neonatal nurses in all eight neonatal intensive care units in Flanders, Belgium in May 2017. Respondents indicated agreement with statements regarding perinatal ELDs on a Likert-scale and sent back questionnaires via mail. RESULTS: The response rate was 49.5% (302/610). Most neonatologists and nurses found nontreatment decisions such as withholding or withdrawing treatment acceptable (90-100%). Termination of pregnancy when the foetus is viable in cases of severe or lethal foetal problems was considered highly acceptable in both groups (80-98%). Physicians and nurses do not find different ELDs equally acceptable, e.g. nurses more often than physicians (74% vs 60%, p = 0.017) agree that it is acceptable in certain cases to administer medication with the explicit intention of hastening death. CONCLUSION: There was considerable support for both prenatal and neonatal ELDs, even for decisions that currently fall outside the Belgian legal framework. Differences between neonatologists' and nurses' attitudes indicate that both opinions should be heard during ELD-making.
Dombrecht L; Deliens L; Chambaere K; Baes S; Cools F; Goossens L; Naulaers G; Roets E; Piette V; Cohen J; Beernaert K
Acta Paediatrica
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/10.1111/apa.14797" target="_blank" rel="noreferrer noopener">10.1111/apa.14797</a>
Trends in length of stay for Neonatal Intensive Care Unit patients who die before hospital discharge
death; ethics; neonate; NICU; palliative care
OBJECTIVES: The objectives of this study were to establish days between birth and death for neonates over a 14-year period, determine if days between birth and death have changed over time across gestational age cohorts, and identify diagnoses which may put infants at high risk of prolonged hospitalization leading to death. STUDY DESIGN: This was a single-site, retrospective chart review of inborn infants who died prior to hospital discharge. RESULTS: Two hundred and thirty-nine patients born between 1/1/2006 and 12/31/2020 met inclusion criteria. Days until death ranged from 0 to 300 with a median of 6 days (interquartile range = 23). Median days until death increased over time, with a statistically significant increase between epoch 1 and epoch 2 (p = 0.016) but not between epoch 2 and epoch 3 (p = 0.618). Extremely premature infants died earlier than more mature infants (p < 0.001). In addition, infants with complex congenital heart disease or a gastrointestinal (GI) catastrophe died later (p < 0.001 and p < 0.001, respectively) than newborns without cardiac or GI issues. CONCLUSIONS: Our findings demonstrate an increase in time to death for newborns who did not survive to hospital discharge over a 14-year period. This trend suggests that the dynamics informing Meadows' assertion that "doomed infants die early" may be shifting, with some seriously ill infants who die before hospital discharge surviving longer than previously described. More research is needed to understand how best to care for babies who will not survive to discharge and to explore when supports such as palliative care consultation may be beneficial. KEY POINTS: As per W. Meadow, "Doomed infants die early" · Pre-death length of stay varies with diagnosis.. · Some seriously ill infants who die before hospital discharge are no longer dying early.. · These infants and families may need supports..
Guttmann K; Puoplo N; Richter F; Weintraub AS
American Journal of Perinatology
2021
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<a href="http://doi.org/10.1055/a-1712-5313" target="_blank" rel="noreferrer noopener">10.1055/a-1712-5313</a>
Attitudes and Experiences Towards Death of Healthcare Professionals Working in Neonatal Intensive Care Units
death; neonatal intensive care units; experiences; healthcare professionals; attitudes
BACKGROUND: Death is an integral part of neonatal intensive care units' (NICUs) environment and little it is known about NICU's staff death concepts. AIM: To investigate attitudes and experiences towards death of healthcare professionals (HPs) working in NICUs. DESIGN: Totally 131 participants from six hospitals were included in the study. Research instruments were a questionnaire designed by the authors and the scale Death Attitude Profile-Revised. RESULTS: Gender, marital and educational status, frequent contact with end of life neonates and provision of neonatal end of life care during the research period correlated significantly with dimensions of DAP-R. Impact of NICU neonatal deaths on personal life correlated negatively with fear of death and positively with escape acceptance. CONCLUSION: Evaluating the interrelationships among personal characteristics, attitudes and experiences towards death among NICU HPs may increase our understanding concerning working with dying neonates and provide direction for educational intervention and continuing professional support.
Metallinou D; Bardo S; Kitsonidou I; Sotiropoulou N
Omega
2021
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<a href="http://doi.org/10.1177/00302228211048667" target="_blank" rel="noreferrer noopener">10.1177/00302228211048667</a>
Parents experience of using "cold" facilities at a children's hospice after the death of their baby: A qualitative study
children; Cold cot; death; hospice; parent experience; qualitative study
There is a growing movement in children's hospice care to offer families time with their baby after death through use of a "cold cot"; however, there is very limited research in this area. We interviewed seven parents (four mothers and three fathers). Our thematic analysis identified six themes: being able to care for my baby in a way that I never had, space and time to adjust to the loss, time as a family, having my baby close, creating memories, and awareness of societal perceptions. The authors conclude that these facilities provided memories, strengthened legacy, and were a valuable experience.
Norton EA; Mastroyannopoulou K; Rushworth I
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/10.1080/07481187.2020.1836070" target="_blank" rel="noreferrer noopener">10.1080/07481187.2020.1836070</a>
Evaluation of End-of-Life Care Programs at Emily's House Children's Hospice
pain; death; dyspnea; major clinical study; neoplasm; hospice; seizure; conference abstract; human; child; female; male; diagnosis; terminal care; patient care
Background: Emily's House Children's Hospice (EH) located in Toronto, Canada provides respite, transitional care, symptom management, and end-of-life (EoL) care. Children with serious medical conditions and their families may access any program over months or years but some only access EoL care.
Ross S; Daffern K; Widger K; Rapoport A; Salminen R
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.416" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.416</a>
Current Grief Support in Pediatric Palliative Care
bereavement; death; grief; hospice; hospital; palliative; pediatric; programing; support; thanatology
Grief support changes as more is learned from current grief theory and research. The authors provide a comprehensive overview of current grief support as it relates to Pediatric Palliative Care (PPC). The following aspects of grief are addressed: (1) anticipatory grief: the nondeath losses that occur with a complex and chronic illness, as well as the time leading up to death; (2) grief around the time of death: the intense and sacred experience of companioning with a dying child; (3) grief after death: supporting bereavement and mourning through programing and other methods; (4) innovative approaches: the future of grief support. The contents of this article are meant to support and educate programs currently providing grief services and those aiming to begin the meaningful work of grief support.
Schuelke T; Crawford C; Kentor R; Eppelheimer H; Chipriano C; Springmeyer K; Shukraft A; Hill M
Children
2021
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/10.3390/children8040278" target="_blank" rel="noreferrer noopener">10.3390/children8040278</a>
Moving and Handling Children After Death: An Inductive Thematic Analysis of the Factors That Influence Decision Making by Children's Hospice Staff
pediatric; palliative care; death; nursing; family-centered care; evidence-based practice; moving and lifting patients; professional education
Hospices for children and adolescents in the United Kingdom provide care to the bodies of deceased children in specially designed chilled bedrooms called "cool rooms." In an effort to develop resources to support hospice practitioners to provide this specialist area of care, this study aimed to identify the factors that influence decision making when moving and handling children's bodies after death in a hospice cool bedroom. An internet-based survey was sent to all practitioners employed by 1 children's hospice. A total of 94.9% of eligible staff responded (n = 56). An inductive approach to thematic analysis was undertaken, using a 6-phase methodological framework. Three core themes were identified that inform practitioners' perception of the appropriateness of moving and handling decisions: care of the body, stages of care, and method of handling. The complexity of decision making and variation in practice was identified. Practitioners relied on both analytical and initiative decision making, with more experienced practitioners using an intuitive approach. Evidence-based policy and training influence the perception of appropriateness and the decisions and behavior of practitioners. The development of a policy and education framework would support practitioners in caring for children's bodies after death, standardizing expectations and measures of competence in relation to moving and handling tasks.
Tatterton MJ; Honour A; Kirkby L; Billington D
Journal of Hospice & Palliative Nursing
2021
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<a href="http://doi.org/10.1097/njh.0000000000000823" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000823</a>
Parental bereavement - impact of death of neonates and children under 12 years on personhood of parents: a systematic scoping review
Infant; Bereavement; Parents; End of life; Personhood; Paediatrics; Palliative care; Death; Neonate; Ring theory of personhood
BACKGROUND: Losing a child tragically impacts the well-being and functioning of parents. With these effects extending beyond emotional, physical morbidity and compromising self-perceptions, appropriate, longitudinal, timely and personalised support is key to effective care of bereaved parents. However, in the absence of a comprehensive understanding of parental bereavement, effective support of bereaved parents remains suboptimal. To address this gap, we scrutinise prevailing data on the effects of a child's death, aged 0-12 years, through the lens of the Ring Theory of Personhood (RToP). METHODS: To study prevailing accounts of bereaved parents following the death of a child, we adopt Krishna's Systematic Evidence Based Approach (SEBA) to structure our Systematic Scoping Review (SSR in SEBA). RESULTS: Three thousand seventy-four abstracts were reviewed, 160 full text articles were evaluated, and 111 articles were included and analysed using thematic and content analysis. Four themes/categories were identified relating to the four rings of the RToP. Findings reveal that static concepts of protective and risk factors for grief are misplaced and that the support of healthcare professionals is key to assisting bereaved parents. CONCLUSION: In the absence of consistent support of bereaved parents, this study highlights the need for effective training of healthcare professionals, beginning with an appreciation that every aspect of an individual parent's personhood is impacted by the loss of their child. Acknowledging grief as a complex, evolving and personalised process subjected to parental characteristics, settings, context and available support, this SSR in SEBA calls attention to effective nurturing of the relationship between parents and healthcare professionals, and suggests use of the RToP to assess and direct personalised, timely, specific support of parents in evolving conditions. We believe the findings of this review also call for further studies to support healthcare professionals as they journey with bereaved parents.
Vig PS; Lim JY; Lee RWL; Huang H; Tan XH; Lim WQ; Lim MBXY; Lee ASI; Chiam M; Lim C; Baral VR; Krishna LKR
BMC Palliative Care
2021
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<a href="http://doi.org/10.1186/s12904-021-00831-1" target="_blank" rel="noreferrer noopener">10.1186/s12904-021-00831-1</a>
Neonatal donation: are newborns too young to be recognized?
Infant; Retrospective Studies; Newborn Infant; End-of-life care; Tissue and Organ Procurement; Brain Death; Tissue Donors; Pediatric; Organ donation; Neonatal; Death; Tissue donation
Neonatal organ and tissue donation is not common practice in the Netherlands. At the same time, there is a transplant waiting list for small size-matched organs and tissues. Multiple factors may contribute to low neonatal donation rates, including a lack of awareness of this option. This study provides insight into potential neonatal organ and tissue donors and reports on how many donors were actually reported to the procurement organization. We performed a retrospective analysis of the mortality database and medical records of two largest neonatal intensive care units (NICUs) in the Netherlands. This study reviewed records of neonates with a gestational age >37 weeks and weight >3000g who died in the period from January 1, 2005 through December 31, 2016. During the study period, 259 term-born neonates died in the two NICUs. In total, 132 neonates with general contra-indications for donation were excluded. The medical records of 127 neonates were examined for donation suitability. We identified five neonates with documented brain death who were not recognized as potential organ and/or tissue donors. Of the remaining neonates, 27 were found suitable for tissue donation. One potential tissue donor had been reported to the procurement organization. In three cases, the possibility of donation was brought up by parents.Conclusion: A low proportion (2%) of neonates who died in the NICUs were found suitable for organ donation, and a higher proportion (12%) were found suitable for tissue donation. We suggest that increased awareness concerning the possibility of neonatal donation would likely increase the identification of potential neonatal donors. What is Known: • There is an urgent need for very small organs and tissues from neonatal donors What is New: • A number of neonates who died in the NICU were suitable organ or/and tissue donors but were not recognized as donors. • Knowledge on neonatal donation possibilities is also important for proper counseling of parents who sometimes inquire for the possibility of organ and tissue donation.
Vileito A; Hulzebos CV; Toet MC; Baptist DH; Verhagen EAA; Siebelink MJ
European Journal of Pediatrics
2021
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<a href="http://doi.org/10.1007/s00431-021-04139-3" target="_blank" rel="noreferrer noopener">10.1007/s00431-021-04139-3</a>
A Framework for Pediatric Intensivists Providing Compassionate Extubation at Home
child; death; empathy; airway extubation; intensive care units pediatric
For families facing end-of-life decisions for their critically ill children, compassionate extubation at home is a valuable service that pediatric intensivists can provide. Compassionate extubation at home is resource intensive and can be logistically challenging. Discouragingly, guidance on compassionate extubation at home in the literature is limited. We developed an evidence- and experience-based framework for compassionate extubation at home addressing common planning challenges and resource management. Our objective is to share this framework and an accompanying checklist, so that pediatric intensivists in other institutions can adapt these tools for their use, reducing barriers to providing compassionate extubation at home for critically ill children at the end of life. Copyright © 2021 Lippincott Williams and Wilkins. All rights reserved.
Woodruff AG; Bingham SB; Jarrah RJ; Bass AL; Nageswaran S
Pediatric Critical Care Medicine
2021
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<a href="http://doi.org/10.1097/PCC.0000000000002655" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002655</a>
Trends in the aggressiveness of pediatric cancer near the end-of-life
adult; aggressiveness; artificial ventilation; cancer patient; child; Childhood cancer; conference abstract; controlled study; death; diagnosis; female; hematologic malignancy; human; intubation; Japan; major clinical study; male; resuscitation; school child; terminal care; young adult
Backgrounds: Many adult patients with cancer who knowthey are dying choose less intense care. High intensity careis associated with worse caregiver outcomes. Little is knownabout intensity of treatment of end-of-life care in children withcancer in Japan.
Yotani N; Shinjo D; Fushimi K; Matsumoto K
Pediatric Blood and Cancer
2018
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<a href="http://doi.org/10.1002/pbc.27514" target="_blank" rel="noreferrer noopener">10.1002/pbc.27514</a>
Sudden unexpected death in children with epilepsy: Hearing from parents
Female; Humans; Male; Parents; Death; Epilepsy; Sudden
2014-02
Abdalla IG; Scorza CA; Fiorini AC; Cavalheiro EA; Scorza FA
Epilepsy & Behavior
2014
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Journal Article
<a href="http://doi.org/10.1016/j.yebeh.2013.11.012" target="_blank" rel="noreferrer">10.1016/j.yebeh.2013.11.012</a>
The efficacy of educational interventions on neonatal intensive care unit nurses knowledge and attitude toward neonatal palliative care
fatigue; Palliative Care; Infant Newborn; adult; article; controlled study; female; hospital admission; human; male; death; family; pain; chronic pain; palliative therapy; neonatal intensive care unit; nursing; prognosis; grief; anxiety; morphine; human experiment; nurse; scoring system; aggression; questionnaire; demographics; sedation; nausea and vomiting; respiration depression; care behavior; Jordan; pretest posttest design; work experience; opiate; attitude; education program; knowledge; adjuvant therapy; analgesic activity; cocaine; drowsiness; drug dependence; educational status; electrolyte disturbance; emotional deprivation; intestine; marriage; neonatal intensive care unit attitude scale; pethidine
Abuhammad S; Elayyan M; El-Bashir M
Electronic Journal of General Medicine
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="https://www.ejgm.co.uk/download/the-efficacy-of-educational-interventions-on-neonatal-intensive-care-unit-nurses-knowledge-and-12902.pdf">10.29333/ejgm/12902</a>
Factors Associated With Mode of Separation for People With Palliative Diagnoses With Preference for Home Death Receiving Care From a Nurse-Led End of Life (Palliative Extended and Care at Home) Program
Humans; Child; Caregivers; Nurse's Role; Home Care Services; Palliative Care/methods; Death
Palliative Extended and Care at Home (PEACH) is a rapid response nurse-led package of care mobilized for palliative care patients who have an expressed preference to die at home. This study aimed to identify the demographic and clinical predictors of home death for patients receiving the package. Deidentified data were used from administrative and clinical information systems. Univariate and multivariate analyses were conducted to assess association of sociodemographic factors with mode of separation. Furthermore, 1754 clients received the PEACH package during the study period. Mode of separation was home death (75.7%), hospital/palliative care unit admission (13.5%), and alive/discharged from the PEACH Program (10.8%). Of participants with clear preference to die at home, 79% met their wish. Multivariate analysis demonstrated cancer diagnosis, patients who wished to be admitted when death was imminent, and patients with undecided preference for location of death were associated with an increased likelihood of being admitted to the hospital. Compared with those with spousal caregivers, those cared for by their child/grandchild and other nonspouse caregivers were significantly associated with a decreased likelihood of being admitted to the hospital/palliative care unit. Our results show that opportunities to tailor home care based on referral characteristics to meet patient preference to die at home, at individual, system, and policy levels, exist.
Agar MR; Xuan W; Lee J; Barclay G; Oloffs A; Jobburn K; Harlum J; Maurya N; Chow JSF
Journal of Hospice and Palliative Nursing
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/10.1097/njh.0000000000000841" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000841</a>
How Do Children Die in PICUs Nowadays? A Multicenter Study From Spain
brain dead; chronic disease; critically ill; death; neuromuscular disease; pediatric intensive care unit; PICU; respiratory disease
OBJECTIVES: To describe how children currently die in Spanish PICUs, their epidemiologic characteristics and clinical diagnoses. DESIGN: Prospective multicenter observational study. SETTING: Eighteen PICUs participating in the MOdos de Morir en UCI Pediatrica-2 (MOMUCI-2) study in Spain. PATIENTS: Children 1 to 16 years old who died in PICU during 2017 and 2018.None. MEASUREMENTS AND MAIN RESULTS: During the 2-year study period, 250 deaths were recorded. Seventy-three children (29.3%) were younger than 1 year, 131 (52.6%) were between 1 and 12 years old, and 45 (18.1%) were older than 12. One-hundred eighty patients (72%) suffered from an underlying chronic disease, 54 (21.6%) had been admitted to PICU in the past 6 months, and 71 (28.4%) were severely disabled upon admission. Deaths occurred more frequently on the afternoon-night shift (62%) after a median PICU length of stay of 3 days (1-12 d). Nearly half of the patients died (48.8%) after life-sustaining treatment limitation, 71 died (28.4%) despite receiving life-sustaining therapies and cardiopulmonary resuscitation, and 57 (22.8%) were declared brain dead. The most frequent type of life-sustaining treatment limitation was the withdrawal of mechanical ventilation (20.8%), followed by noninitiation of cardiopulmonary resuscitation (18%) and withdrawal of vasoactive drugs (13.7%). Life-sustaining treatment limitation was significantly more frequent in patients with an underlying neurologic-neuromuscular disease, respiratory disease as the cause of admission, a previous admission to PICU in the past 6 months, and severe disability. Multivariate analyses indicated that life-sustaining treatment limitation, chronicity, and poor Pediatric Cerebral Performance Category score were closely related. CONCLUSION(S): Currently, nearly half of the deaths in Spanish PICUs occur after the withdrawal of life-sustaining treatments. These children are more likely to have had previous admissions to the PICU, be severely disabled or to suffer from chronic diseases. Healthcare professionals who treat critically ill children ought to be aware of this situation and should therefore be prepared and trained to provide the best end-of-life care possible.
Agra-Tunas C; Rodriguez-Ruiz E; Rodriguez Merino E
Pediatric Critical Care Medicine
2020
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<a href="http://doi.org/10.1097/PCC.0000000000002359" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002359</a>
Pediatric chronic patients at outpatient clinics: A study in a Latin American University Hospital
Chronic Patient; Emergency Ward; Hospital Admission; Hospitalization; Outpatient; University Hospital; Adolescent; Adult; Cardiology; Child; Controlled Study; Cross Sectional Study; Death; Emergency Health Service; Endocrinology; Female; Hematology; Human; Intensive Care Unit; Kidney Transplantation; Major Clinical Study; Male; Nephrology; Neurology; Oncology; Pain; Physician; Psychiatry; Rheumatology
Objective: To describe the characteristics of children and adolescentes with chronic diseases of outpatient clinics at a tertiary university hospital. Methods: A cross-sectional study was performed with 16,237 patients with chronic diseases followed-up in one year. The data were collected through the electronic system, according to the number of physician appointments in 23 pediatric specialties. Patients were divided in two groups: children (0-9 years) and adolescents (10-19 years). Early (10-14 years) and late (15-19 years) adolescent groups were also analyzed. Results: Of the total sample, 56% were children and 46% were adolescents. The frequencies of following pediatric specialties were significantly higher in adolescents when compared with children: cardiology, endocrinology, hematology, nephrology/renal transplantation, neurology, nutrology, oncology, palliative and pain care, psychiatry, and rheumatology (p <. 0.05). The frequencies of emergency service visits (30% vs. 17%, p <. 0.001), hospitalizations (23% vs. 11%, p <. 0.001), intensive care unit admissions (6% vs. 2%, p <. 0.001), and deaths (1% vs. 0.6%, p = 0.002) were significantly lower in adolescents than in children. However, the number of physician appointments (>=13) per patient was also higher in the adolescent group (5% vs. 6%, p = 0.018). Further analysis comparison between early and late adolescents revealed that the first group had significantly more physician appointments (35% vs. 32%, p = 0.025), and required more than two pediatric specialties (22% vs. 21%, p = 0.047). Likewise, the frequencies of emergency service visits (19% vs. 14%, p <. 0.001) and hospitalizations (12% vs. 10%, p = 0.035) were higher in early adolescents. Conclusions: This study evaluated a large population in a Latin American hospital and suggested that early adolescents with chronic diseases required many appointments, multiple specialties and hospital admissions.
Alveno RA; Miranda CV; Passone CG; Waetge AR; Hojo ES; Farhat SCL; Odone-Filho V; Tannuri U; Carvalho WB; Carneiro-Sampaio M; Silva CA
Jornal De Pediatria.
2017
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<a href="http://doi.org/10.1016/j.jped.2017.07.014" target="_blank" rel="noreferrer">10.1016/j.jped.2017.07.014</a>
Parent Priorities in End-of-Life Care for Children With Cancer
child; Terminal Care; terminal care; female; human; death; child parent relation; psychology; cross-sectional study; middle aged; neoplasm/th [Therapy]; Bayes theorem
Importance: Robust quality measures to benchmark end-of-life care for children with cancer do not currently exist; 28 candidate patient-centered quality measures were previously developed. Objective(s): To prioritize quality measures among parents who lost a child to cancer. Design, Setting, and Participant(s): This survey study was conducted using an electronic, cross-sectional discrete choice experiment (DCE) with maximum difference scaling from January to June 2021 in the US. In each of 21 questions in the DCE, participants were presented with a set of 4 quality measures and were asked to select the most and least important measures within each set. All 28 quality measures were presented an equal number of times in different permutations. In the volunteer sample, 69 eligible bereaved parents enrolled in the study; 61 parents completed the DCE (participation rate, 88.4%). Main Outcomes and Measures: Using choices participants made, a hierarchical bayesian multinomial logistic regression was fit to derive mean importance scores with 95% credible intervals (95% Crs) for each quality measure, representing the overall probability of a quality measure being selected as most important. Importance scores were rescaled proportionally from 0 to 100, with the sum of scores for all quality measures adding up to 100. This enabled interpretation of scores as the relative importance of quality measures. Result(s): Participants included 61 bereaved parents (median [range] age, 48 [24-74] years; 55 individuals self-identified as women [90.2%]; 1 American Indian or Alaska Native [1.6%], 1 Asian [1.6%], 2 Black or African American [3.3%], 1 Native Hawaiian or Pacific Islander, and 58 White [91.8%]; 58 not Hispanic or Latinx [95.1%]). Highest-priority quality measures by mean importance score included having a child's symptoms treated well (9.25 [95% Cr, 9.06-9.45]), feeling that a child's needs were heard by the health care team (8.39 [95% Cr, 8.05-8.73]), and having a goal-concordant end-of-life experience (7.45 [95% Cr, 6.84-8.05]). Lowest-priority quality measures included avoiding chemotherapy (0.33 [95% Cr, 0.21-0.45]), provision of psychosocial support for parents (1.01 [95% Cr, 0.57-1.45]), and avoiding the intensive care unit (1.09 [95% Cr, 0.74-1.43]). Rank-ordering measures by mean importance revealed that symptom management was 9 times more important to parents than psychosocial support for themselves. Conclusions and Relevance: This study found that bereaved parents prioritized end-of-life quality measures focused on symptom management and goal-concordant care while characterizing quality measures assessing their own psychosocial support and their child's hospital resource use as substantially less important. These findings suggest that future research should explore innovative strategies to measure care attributes that matter most to families of children with advanced cancer.
Ananth P; Lindsay M; Mun S; McCollum S; Shabanova V; de Oliveira S; Pitafi S; Kirch R; Ma X; Gross CP; Boyden JY; Feudtner C; Wolfe J
JAMA Network Open
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/10.1001/jamanetworkopen.2023.13503" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2023.13503</a>
Influence of early phase clinical trial enrollment on patterns of end-of-life care for children with advanced cancer
Advanced Cancer; Female; Male; Terminal Care; Child; Childhood Cancer; Clinical Trial; Cohort Analysis; Controlled Study; Death; Health Care Utilization; Human; Major Clinical Study; Palliative Therapy
We conducted a retrospective cohort study of 125 pediatric oncology patients who died in 2010-2014 to explore how healthcare utilization, pediatric palliative care (PPC) receipt, and end-of-life care (EOLC) differed between patients enrolled in early phase clinical trials (EP) and those not enrolled (NEP). Baseline characteristics and healthcare utilization did not significantly differ between groups. EP patients received PPC consultation closer to death than NEP patients (median days before death = 58 [interquartile range = 16-84] vs. 85 [32-173]; P = 0.04). Our findings suggest that early phase trial enrollment does not substantially alter EOLC for children with advanced cancer but may contribute to later PPC engagement. Future studies should definitively assess the relationship between trial enrollment and PPC timing.
Ananth P; Monsereenusorn C; Ma C; Al-Sayegh H; Wolfe J; Rodriguez-Galindo C
Pediatric Blood And Cancer
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/10.1002/pbc.26748" target="_blank" rel="noreferrer">10.1002/pbc.26748</a>
Spirituality, resilience, and narrative: coping with parental death
Grief; Parents; Death; Spirituality; Resilience; coping; Parental Death
1998
Angell GB; Dennis BG; Dumain LE
Families In Society
1998
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/10.1606/1044-3894.865" target="_blank" rel="noreferrer">10.1606/1044-3894.865</a>
Communication About Dying, Death, And Bereavement: A Systematic Review Of Children's Literature
Bereavement; Bibliotherapy; Child; Children's Literature; Death; Dying; Grief; Only Child
BACKGROUND: Children's books have the potential to facilitate communication about death for children living with a serious illness and for children coping with the death of a loved one. OBJECTIVES: This study examines the content of children's literature relevant to the topic of dying and death and identifies books providers can share with children and their families. DESIGN: A search of children's literature was conducted using four electronic databases and one additional search engine using the word "Death" or "Dying." Storybooks about dying, death, and bereavement published in English, French, or Spanish between 1995 and 2015 were included. MEASUREMENTS: Each book underwent content analysis by at least two independent reviewers. Strict PRISMA standard was followed. Full protocol is available as PROSPERO #CRD42016042129. RESULTS: Two hundred ten books met inclusion criteria. The dying subject was primarily a grandparent (n = 78) or pet (n = 44). Books on the experience of a child dying were scarce (n = 5). The word death or dying was used in 75% of the books (n = 158), while others utilized euphemisms. The majority of books featured animals (n = 40) or Caucasian subjects (n = 122) and included spiritual elements such as heaven (n = 122). Less than one-quarter of the books included tools for readers to address the topic of death. CONCLUSIONS: Storybooks can be a helpful tool to introduce communication about dying and death with children. Gaps exist in current children's literature to effectively enable children to reflect on their own dying process. A general summary of available books is provided to assist those caring for children and families facing end-of-life issues.
Arruda-Colli MN; Weaver M; Wiener L
Journal Of Palliative Medicine
2017
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10.1089/jpm.2016.0494
Assessment of an Instrument to Measure Interdisciplinary Staff Perceptions of Quality of Dying and Death in a Pediatric Cardiac Intensive Care Unit
Humans; Infant; Cross-Sectional Studies; Female; Male; Child; Intensive Care Units, Pediatric; Family; Death; Terminal Care
IMPORTANCE: Lack of pediatric end-of-life care quality indicators and challenges ascertaining family perspectives make staff perceptions valuable. Cardiac intensive care unit (CICU) interdisciplinary staff play an integral role supporting children and families at end of life. OBJECTIVES: To evaluate the Pediatric Intensive Care Unit Quality of Dying and Death (PICU-QODD) instrument and examine differences between disciplines and end-of-life circumstances. DESIGN, SETTING, AND PARTICIPANTS: This cross-sectional survey included staff at a single center involved in pediatric CICU deaths from July 1, 2019, to June 30, 2021. EXPOSURES: Staff demographic characteristics, intensity of end-of-life care (mechanical support, open chest, or cardiopulmonary resuscitation [CPR]), mode of death (discontinuation of life-sustaining therapy, treatment limitation, comfort care, CPR, and brain death), and palliative care involvement. MAIN OUTCOMES AND MEASURES: PICU-QODD instrument standardized score (maximum, 100, with higher scores indicating higher quality); global rating of quality of the moment of death and 7 days prior (Likert 11-point scale, with 0 indicating terrible and 10, ideal) and mode-of-death alignment with family wishes. RESULTS: Of 60 patient deaths (31 [52%] female; median [IQR] age, 4.9 months [10 days to 7.5 years]), 33 (55%) received intense care. Of 713 surveys (72% response rate), 246 (35%) were from nurses, 208 (29%) from medical practitioners, and 259 (36%) from allied health professionals. Clinical experience varied (298 [42%] ≤5 years). Median (IQR) PICU-QODD score was 93 (84-97); and quality of the moment of death and 7 days prior scores were 9 (7-10) and 5 (2-7), respectively. Cronbach α ranged from 0.87 (medical staff) to 0.92 (allied health), and PICU-QODD scores significantly correlated with global rating and alignment questions. Mean (SD) PICU-QODD scores were more than 3 points lower for nursing and allied health compared with medical practitioners (nursing staff: 88.3 [10.6]; allied health: 88.9 [9.6]; medical practitioner: 91.9 [7.8]; P < .001) and for less experienced staff (eg, <2 y: 87.7 [8.9]; >15 y: 91, P = .002). Mean PICU-QODD scores were lower for patients with comorbidities, surgical admissions, death following treatment limitation, or death misaligned with family wishes. No difference was observed with palliative care involvement. High-intensity care, compared with low-intensity care, was associated with lower median (IQR) rating of the quality of the 7 days prior to death (4 [2-6] vs 6 [4-8]; P = .001) and of the moment of death (8 [4-10] vs 9 [8-10]; P =.001). CONCLUSIONS AND RELEVANCE: In this cross-sectional survey study of CICU staff, the PICU-QODD showed promise as a reliable and valid clinician measure of quality of dying and death in the CICU. Overall QODD was positively perceived, with lower rated quality of 7 days prior to death and variation by staff and patient characteristics. Our data could guide strategies to meaningfully improve CICU staff well-being and end-of-life experiences for patients and families.
Bailey V; Beke DM; Snaman JM; Alizadeh F; Goldberg S; Smith-Parrish M; Gauvreau K; Blume ED; Moynihan KM
JAMA Network Open
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/10.1001/jamanetworkopen.2022.10762" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2022.10762</a>
Clinical and Physiologic Factors Associated With Mode of Death in Pediatric Severe TBI
Clinical factors; Death; Pediatrics; Physiologic factors; Traumatic brain injury
Aims and Objectives: Severe traumatic brain injury (sTBI) is the leading cause of death in children. Our aim was to determine the mode of death for children who died with sTBI in a Pediatric Critical Care Unit (PCCU) and evaluate factors associated with mortality. Method(s): We performed a retrospective cohort study of all severely injured trauma patients (Injury Severity Score >= 12) with sTBI (Glasgow Coma Scale [GCS] <= 8 and Maximum Abbreviated Injury Scale >= 4) admitted to a Canadian PCCU (2000-2016). We analyzed mode of death, clinical factors, interventions, lab values within 24 h of admission (early) and pre-death (48 h prior to death), and reviewed meeting notes in patients who died in the PCCU. Result(s): Of 195 included patients with sTBI, 55 (28%) died in the PCCU. Of these, 31 (56%) had a physiologic death (neurologic determination of death or cardiac arrest), while 24 (44%) had withdrawal of life-sustaining therapies (WLST). Median (IQR) times to death were 35.2 (11.8, 86.4) hours in the physiologic group and 79.5 (17.6, 231.3) hours in the WLST group (p = 0.08). The physiologic group had higher partial thromboplastin time (PTT) within 24 h of admission (p = 0.04) and lower albumin prior to death (p = 0.04). Conclusion(s): Almost half of sTBI deaths in the PCCU were by WLST. There was a trend toward a longer time to death in these patients. We found few early and late (pre-death) factors associated with mode of death, namely higher PTT and lower albumin. Copyright © 2021 Baird, Miller, Cameron, Fraser and Tijssen.
Baird TD; Miller MR; Cameron S; Fraser DD; Tijssen JA
Frontiers in Pediatrics
2021
<a href="http://doi.org/10.3389/fped.2021.793008" target="_blank" rel="noreferrer noopener">10.3389/fped.2021.793008</a>
Challenges experienced by paediatricians providing palliative care to children; A thematic analysis
death; child; female; human; major clinical study; male; palliative therapy; controlled study; thematic analysis; human experiment; learning; pediatrics; conference abstract; questionnaire; e-mail; pediatrician; health care system; needs assessment; Australia; expectation; holistic care; social welfare; specialist registrar
Background: and aim Palliative Care for Children is defined as 'an active and total approach to care, from the point of diagnosis or recognition throughout the child's life, death and beyond'. It is recognised that the prevalence of children with life-limiting conditions (LLC) is increasing. In Ireland the majority of children with LLC are cared for by paediatricians working in hospitals with no direct access to specialist paediatric palliative care(PPC) services. This study was part of a learning needs assessment of paediatrician's training and experience in PPC. Method(s): Consultants and Specialist Registrars in Paediatrics were approached by email and asked to complete a questionnaire regarding their learning needs in PPC. The Quality of Care Collaborative for Australia in PPC Project Research Study Group Learning Needs Assessment template was used with permission. The questionnaire included both multiple choice and free-text questions. Quantitative data from the study has been reported elsewhere. Thematic analysis based on the approach of Braun and Clarke (2006) was used to analyse data provided in the free-text answers. Result(s): 114 paediatricians responded to the survey, 72 respondents (63%) provided free-text answers to the question 'Reflecting on your most recent clinical interactions with children requiring palliative care support. What were the challenges?' On analysis, three overarching themes emerged, 'Best interests of the child', 'Inadequate training and confidence' and 'Co-ordinating care'. 'Best interests of the child' referred to the challenges experienced in ensuring that best interests of the child remain at the core of all decisions made when providing palliative care. This overarching theme included two sub-themes 'Complex communication' which referred to the challenges in managing parental expectations in increasingly technologically advanced healthcare systems and 'First do no harm' referring to the frequent ethical dilemmas that arise in PPC. 'Inadequate adequate training and confidence' referred to lack of specific education in complex symptom management and also to lack of familiarity with community based healthcare services. The theme of 'coordinating care' encompassed the need to liaise with community services but also the need to provide holistic care to the whole family which may be unfamiliar paediatricians working in an acute hospital setting. Conclusion(s): This study explores the challenges experienced by paediatricians providing palliative care to children with LLCs. The themes provide insight into those experiences and provides valuable direction to support the development of future educational programmes in this important and rapidly evolving paediatric sub-speciality.
Balfe J; Whitla L; Devins M; Molloy E; Twomey M; O'Reilly M
Archives of Disease in Childhood
2019
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Effects of sibling death on teenagers
adolescent; Female; Humans; Male; Death; Adolescent Psychology; Family; Adult; Interpersonal Relations; Self Concept; Attitude to Death; Peer Group; Sibling Relations; Grief; sibling bereavement
This study reports the effects of sibling death on 33 adolescents from white, middle- to upper-middle income families. Contact was made through mutual support groups for bereaved parents. A focused interview was used to gather data on bereavement reactions and on self-concept. Bereavement reactions investigated included kinds of emotional responses, effects on sleeping and eating, frequency of thoughts about the deceased sibling, effects on school work, means of dealing with the death and interpersonal relationships. Self-concept perception investigated were perceptions of personal maturity, lessons learned from the death and the importance of religious beliefs. Eleven further measures of self-concept were obtained by means of the "Offer Self-Image Questionnaire for Adolescents." By grouping responses into two time frames (before or a few weeks after the death and at the time of the interview), significant differences in reactions and perceptions were found among the participants.
1983-01
Balk D
The Journal Of School Health
1983
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Journal Article
<a href="http://doi.org/10.1111/j.1746-1561.1983.tb04046.x" target="_blank" rel="noreferrer">10.1111/j.1746-1561.1983.tb04046.x</a>
Factors associated with congruence between preferred and actual place of death
Female; Humans; Male; Terminal Care; Ethnic Groups; Aged; Attitude to Death; Death; Hospices; Environment; Hospitals; social support; location of death
Congruence between preferred and actual place of death may be an essential component in terminal care. Most patients prefer a home death, but many patients do not die in their preferred location. Specialized (physician, hospice, and palliative) home care visits may increase home deaths, but factors associated with congruence have not been systematically reviewed. This study sought to review the extent of congruence reported in the literature and examine factors that may influence congruence. In July 2009, a comprehensive literature search was performed using MEDLINE, PsychInfo, CINAHL, and Web of Science. Reference lists, related articles, and the past five years of six palliative care journals were also searched. Overall congruence rates (percentage of met preferences for all locations of death) were calculated for each study using reported data to allow cross-study comparison. Eighteen articles described 30%-91% congruence. Eight specialized home care studies reported 59%-91% congruence. A physician-led home care program reported 91% congruence. Of the 10 studies without specialized home care for all patients, seven reported 56%-71% congruence and most reported unique care programs. Of the remaining three studies without specialized home care for all patients, two reported 43%-46% congruence among hospital inpatients, and one elicited patient preference "if everything were possible," with 30% congruence. Physician support, hospice enrollment, and family support improved congruence in multiple studies. Research in this important area must consider potential sources of bias, the method of eliciting patient preference, and the absence of a single ideal place of death.
2010
Bell CL; Somogyi-Zalud E; Masaki KH
Journal Of Pain And Symptom Management
2010
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Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2009.07.007" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2009.07.007</a>
Preventing psychosocial impairment in siblings of terminally ill children
Child; Humans; Grief; Death; Sibling Relations; Stress; adolescent; Preschool; Adaptation; Psychological; Family/psychology; Parent caregivers; Psychological/prevention & control
A review of the literature provides the basis for a discussion of the impact of sibling death on healthy children whose emotional needs may be unattended both by parents and professionals. Factors which may deter hospice practitioners from delivering effective psychosocial care to siblings are identified and recommendations for preventive intervention are enumerated.
1989
Bendor SJ
The Hospice Journal
1989
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Journal Article
<a href="http://doi.org/10.1080/0742-969x.1989.11882661" target="_blank" rel="noreferrer">10.1080/0742-969x.1989.11882661</a>
Health status of bereaved parents
Child; Female; Humans; Male; Adult; Questionnaires; Death; Health Status; Longitudinal Studies; Time Factors; Case-Control Studies; adolescent; Preschool; bereavement; infant; Parents/psychology; Parent caregivers; Neoplasms/psychology
Forty-seven mothers and 33 fathers, representing 48 families, participated in a propective longitudinal study of the effects on family members of a child's dying. The purpose of this article is to describe parents' health during the terminal illness of their child and during the first year following their child's death from cancer. The Duke-UNC Health Profile was used to examine parents' health prior to and at three points in thime after the child's death. The bereavedparents' general health was compared to the health of normative sample of adults. The findings indicate that parents' health is not adversely affected by a child's death from cancer.
1996
Birenbaum LK; Stewart BJ; Phillips DS
Nursing Research
1996
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Journal Article
<a href="http://doi.org/10.1097/00005721-199705000-00019" target="_blank" rel="noreferrer">10.1097/00005721-199705000-00019</a>
The Nesting Dolls Design: A Methodology for the Recruitment of Bereaved Parents for Partnership Activities Related to Palliative Care and Bereavement Support in Paediatric Psycho-Oncology
52315-07-8 (cypermethrin); 65731-84-2 (cypermethrin); 66841-24-5 (cypermethrin); 67375-30-8 (cypermethrin); bereavement support; child; clinical article; clinician; conference abstract; confidentiality; content analysis; controlled study; cypermethrin; death; evaluation research; female; filter; follow up; human; information center; intensive care; interview; male; neonatology; nesting; palliative therapy; pediatrics; psycho-oncology; questionnaire; research ethics; writing
Objectives: 1) Fill the knowledge gaps about best practices related to collaboration with bereaved families in projects related to end-of-life practices, palliative care and parental bereavement in paediatrics. 2) Identify best practices for establishing safe partnership communication with bereaved families.
Bourque C J; Cardinal G; Dumont E; Sultan S
Journal of Pain and Symptom Management
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.jpainsymman.2018.10.286" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.286</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
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Journal Article
<a href="http://doi.org/10.1080/07481189408252647" target="_blank" rel="noreferrer">10.1080/07481189408252647</a>
The use of rituals in grieving for a miscarriage or stillbirth
Grief; Death; bereavement; Therapy; mothers; coping; Stillbirth; Birth Complications; Miscarriage; Rituals
Preparation for their changing roles in family & society, as well as readying their intimate space for the arrival of an infant, totally engage expectant parents. Miscarriage or stillbirth may bring on a grief storm that strips away many tender roots & branches of new life in the community that the parents have been nurturing. Creation & participation in a grief ritual can bring the grieving parents to a healing resolution. This article describes the healing efficacy of ritual, its elements, & how a compassionate therapist can create one in collaboration with grieving clients.
2004
Brin DJ
Women & Therapy
2004
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Journal Article
<a href="http://doi.org/10.1300/j015v27n03_09" target="_blank" rel="noreferrer">10.1300/j015v27n03_09</a>
Nursing Care at End of Life in Pediatric Intensive Care Unit Patients Requiring Mechanical Ventilation
Acute Disease; Child; Death; Humans; Intensive Care Units Pediatric; Neoplasms; Pain; Respiration Artificial
BACKGROUND: Parents' perceptions of critical care during the final days of their child's life shape their grief for decades. Little is known about nursing care needs of children actively dying in the pediatric intensive care unit (PICU). OBJECTIVES: To examine associations between patient characteristics, circumstances of death, and nursing care requirements for children who died in the PICU. METHODS: A secondary analysis of the data set from the Randomized Evaluation of Sedation Titration for Respiratory Failure trial was conducted. RESULTS: This analysis included 104 children; 67 died after withdrawal of life-sustaining treatments; 21, after failed resuscitation; and 16, after brain death. Patients had a median age of 7.5 years, were cognitively appropriate, and were intubated for acute respiratory failure. Daily pain and sedation scores indicated patients' comfort was well managed (mean pain scores: modal, 0; peak, 2; mean sedation scores: modal, -2; peak, -1). Patients with longer PICU stays more often experienced pain and agitation on the day of death. Illness trajectory (acute, complex chronic condition, or cancer) was associated with pain scores (P = .04). Specifically, children with cancer had higher pain scores than children with acute illness trajectories (P = .01). Many patients (62%) had no change in critical care devices in their last days of life (median, 5 devices). Patterns of pain, sedation, comfort medications, and nursing care requirements did not differ by circumstances of death. CONCLUSION: Children with cancer and longer PICU stays may need comprehensive comfort management. Invasive devices left in place during withdrawal of life support may have inhibited parents' ability to connect with their child. Future research should incorporate parents' perspectives.
Broden EG; Hinds PS; Werner-Lin A; Quinn R; Asaro LA; Curley MAQ
American Journal of Critical Care
2022
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<a href="http://doi.org/10.4037/ajcc2022294" target="_blank" rel="noreferrer noopener">10.4037/ajcc2022294</a>
Masculinity, moralities and being cared for: An exploration of experiences of living and dying in a hospice
Palliative Care; Death; hospice; Australia; identity; dying; father experience; Masculinity; moral practice
http://www.sciencedirect.com/science/article/B6VBF-507BHVC-9/2/87c0e7a37c04eda75f05a7e6f11ab460
Hospices are playing an increasingly important role in end of life care in Australia and internationally and the in-patient hospice experience has not been well documented by social scientists. This paper explores some important facets of the contemporary hospice experience through an examination of the perspectives of 11 male and 9 female Australian in-patients in the last few weeks of their lives. Through a series of qualitative in-depth interviews, we explore their conceptions of death and dying and their experiences of being cared for. The results illustrate a range of important themes including: tensions around what constitutes [`]the good death'; dying and caring as moral practice; and, the centrality of gender identity and relations in shaping experiences of dying and caring. We argue for a sociological approach to death and dying that better elucidates the interplay of identity, morality and relationality at the end of life."
Broom A; Cavenagh J
Social Science & Medicine
2010
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Journal Article
The death of a twin
adolescent; Child; Female; Humans; infant; Male; Death; Fetal Death; Adult; Parent-Child Relations; social support; Child Psychology; Counseling; Preschool; Newborn; Grief; sibling bereavement; Guilt; Twins
Death or disability is much more common in multiple births than single children, especially in the perinatal period. Parents face particular problems in that their loss may be underestimated; their grieving may be impeded by the confusion between the live and the dead baby, and the constant reminder in the survivor may be painful. The surviving twin often suffers profoundly from the loss and may need lifelong support. The value of the twinship should always be respected.
1995-07
Bryan EM
Palliative Medicine
1995
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Journal Article
<a href="http://doi.org/10.1177/026921639500900303" target="_blank" rel="noreferrer">10.1177/026921639500900303</a>
When a Child Dies in the PICU: Practice Recommendations From a Qualitative Study of Bereaved Parents
death; Health Personnel; pediatrics; parents; bereavement; child hospitalization; intensive care unit
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. INTERVENTIONS: None. 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.
Butler A E; Copnell B; Hall H
Pediatric Critical Care Medicine
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/10.1097/pcc.0000000000002040" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002040</a>
Welcoming expertise: Bereaved parents' perceptions of the parent-healthcare provider relationship when a critically ill child is admitted to the paediatric intensive care unit
Adult; Bereavement; Child; child and family wishes; Critical Illness -- Singapore; Death; Female; Grounded theory; Grounded Theory; health personnel attitude; Hospital Mortality; Hospitalized; Humans; Intensive care unit-paediatric; Intensive care units pediatric; Interviews as Topic; Male; Nurse; Parents; Parents/*psychology; Pediatric; Professional-Family Relations; Victoria
BACKGROUND: Entering the paediatric intensive care unit with a critically ill child is a stressful experience for parents. In addition to fearing for their child's well-being, parents must navigate both a challenging environment and numerous new relationships with healthcare staff. How parents form relationships with staff and how they perceive both their own and the healthcare providers' roles in this early stage of their paediatric intensive care journey is currently unknown. PURPOSE: This paper explores bereaved parents' perceptions of their role and their relationships with healthcare providers when their child is admitted to the intensive care unit, as part of a larger study exploring their experiences when their child dies in intensive care. METHODS: A constructivist grounded theory approach was utilised to recruit 26 bereaved parents from 4 Australian intensive care units. Parents participated in audio-recorded, semi-structured interviews lasting 90-150min. All data were analysed using the constant comparative analysis processes, supported by theoretical memos. RESULTS: Upon admission, parents viewed healthcare providers as experts, both of their child's medical care and of the hospital system. This expertise was welcomed, with the parent-healthcare provider relationship developing around the child's need for medical care. Parents engaged in 2 key behaviours in their relationships with staff: prioritising survival, and learning 'the system'. Within each of these behaviours are several subcategories, including 'Stepping back', 'Accepting restrictions' and 'Deferring to medical advice'. CONCLUSIONS: The relationships between parents and staff shift and change across the child's admission and subsequent death in the paediatric intensive care unit. However, upon admission, this relationship centres around the child's potential survival and their need for medical care, and the parent's recognition of the healthcare staff as experts of both the child's care and the hospital system.
Butler A E; Copnell B; Hall H
Australian Critical Care
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.aucc.2017.09.004" target="_blank" rel="noreferrer noopener">10.1016/j.aucc.2017.09.004</a>
Bereaved parents' experiences of research participation
pediatric intensive care unit; content analysis; grounded theory; scientist; follow up; human; article; child; female; male; interview; bereavement; death; spouse
Background As understandings of the impacts of end-of-life experiences on parents’ grief and bereavement increase, so too does the inclusion of bereaved parents into research studies exploring these experiences. However, designing and obtaining approval for these studies can be difficult, as guidance derived from bereaved parents’ experiences of the research process are limited within the current literature. Methods We aimed to explore bereaved parents’ experiences of research participation in a larger grounded theory study exploring experiences of the death of a child in the paediatric intensive care unit. Data were obtained during follow-up phone calls made to 19 bereaved parents, five of whom provided data from their spouse, 1 week after their participation in the study. Participants were asked to reflect on their experiences of research participation, with a focus on recruitment methods, timing of research contact, and the location of their interview. Parents’ responses were analysed using descriptive content analysis. Results Our findings demonstrate that despite being emotionally difficult, parents’ overall experiences of research participation were positive. Parents preferred to be contacted initially via a letter, with an opt in approach viewed most favourably. Most commonly, participants preferred that research contact occurred within 12–24 months after their child’s death, with some suggesting contact after 6 months was also appropriate. Parents also preferred research interviews conducted in their own homes, though flexibility and parental choice was crucial. Conclusions Findings from this study offer further insight to researchers and research review committees, to help ensure that future studies are conducted in a way that best meets the unique needs of bereaved parents participating in research.
Butler AE; Hall H; Copnell B
BMC palliative care
2018
<a href="http://doi.org/10.1186/s12904-018-0375-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0375-4</a>
"Some were certainly better than others" - Bereaved parents' judgements of healthcare providers in the paediatric intensive care unit: A grounded theory study
Child; Death; grounded theory; Health Personnel; Intensive care unit (paediatric); parent
OBJECTIVE: To explore bereaved parents' judgements of healthcare providers, as part of a larger study examining their perceptions of the death of a child in the paediatric intensive care unit. RESEARCH METHODOLOGY: Constructivist grounded theory. SETTING: Four Australian paediatric intensive care units. MAIN OUTCOME MEASURES: Semi-structured, audio recorded interviews were undertaken with 26 bereaved parents 6-48months after their child's death. Data were transcribed verbatim and analysed using open, focused and theoretical coding and the constant comparative method. FINDINGS: Bereaved parents judged healthcare providers as 'good' or 'poor' based on behaviours they exhibit. 'Good' behaviours were further subdivided by parents into four categories: 'Better than others', 'good', 'very good', and 'fantastic'. Common behaviours identified as 'good' included provision of practical assistance, facilitation of parental presence, and sharing of information. In contrast, the concept of 'poor' had no subdivision: all identified behaviours, including diminishing parental concern, mishandling hope, adopting an unprofessional demeanour, judging the child's worth, and mishandling communication, were equally detrimental. CONCLUSIONS: Findings demonstrate that bereaved parents have clear opinions on what constitutes 'good' and 'poor' behaviours when their child is dying. These judgements provide clear examples for healthcare providers who provide end-of-life care, ensuring they provide high quality care.
Butler AE; Copnell B; Hall H
Intensive And Critical Care Nursing
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/10.1016/j.iccn.2017.12.003" target="_blank" rel="noreferrer">10.1016/j.iccn.2017.12.003</a>
The impact of the social and physical environments on parent-healthcare provider relationships when a child dies in PICU: Findings from a grounded theory study
Child; Death; Environment; grounded theory; Paediatric intensive care unit; Parent-healthcare provider relationship
OBJECTIVES: This study explores the influences of the paediatric intensive care environment on relationships between parents and healthcare providers when children are dying. It forms part of a larger study, investigating parental experiences of the death of their child in intensive care. RESEARCH METHODOLOGY: Constructivist grounded theory. SETTING: Four Australian paediatric intensive care units. MAIN OUTCOME MEASURES: Audio-recorded, semi-structured interviews were conducted with twenty-six bereaved parents. Data were analysed using the constant comparison and memoing techniques common to grounded theory. FINDINGS: The physical and social environment of the intensive care unit influenced the quality of the parent-healthcare provider relationship. When a welcoming, open environment existed, parents tended to feel respected as equal and included members of their child's care team. In contrast, environments that restricted parental presence or lacked resources for parental self-care could leave parents feeling like 'watchers', excluded from their child's care. CONCLUSIONS: The paediatric intensive care unit environment either welcomes and includes parents of dying children into the care team, or demotes them to the status of 'watcher'. Such environments significantly influence the relationships parents form with healthcare staff, their ability to engage in elements of their parental role, and their experiences as a whole.
Butler AE; Copnell B; Hall H
Intensive And Critical Care Nursing
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/10.1016/j.iccn.2017.12.008" target="_blank" rel="noreferrer">10.1016/j.iccn.2017.12.008</a>