Siblings and End-Of-Life Decision Making in the NICU
decision making; sibling; care behavior; child; clinical article; conference abstract; content analysis; critically ill patient; Decision Making; electronic medical record; female; human; infant; male; neonatal intensive care unit; perception; semi structured interview; wellbeing
Background: When making end-of-life decisions for a child in the neonatal intensive care unit (NICU), standard practice is to involve parents in shared decision-making so that the values of parents are considered and decisions are made in the interests of the child. In this decision-making process, it is not known whether parents are influenced by the needs of their other children. Method(s): A qualitative two-phase exploratory methodology was chosen to understand how considerations for other children in the family influence parents' decisions. The electronic medical records of children ( n = 20) previously admitted to the Royal Children's Hospital's NICU were analysed for relevant mentions of siblings. Then, families ( n = 3) participated in semi-structured interviews to understand considerations of siblings. Statements and interviews were analysed using inductive content analysis. Result(s): Parents articulate the considerate juggling act of balancing the day-to-day needs of multiple children during the NICU journey. With the wellbeing of siblings in mind, parents made a range of decisions with different degrees of medical impact in the NICU. For end-of-life decisions, parents differed in their perspectives about whether considerations of siblings should be taken into account. Moreover, clinicians were aware of the challenges of caring for multiple children and supported parents with these challenges. Conclusion(s): It is clinically and ethically significant that sibling considerations impact end-of-life decision-making. We suggest clinicians reflect on their own perception of how much siblings should be allowed to influence end-of-life decisions to protect critically ill babies from harm. More research is needed to better understand these influences.
Power J; Gillam L; Prentice TM
Journal of Paediatrics and Child Health
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/10.1111/jpc.16357" target="_blank" rel="noreferrer noopener">10.1111/jpc.16357</a>
Ethics at the end of life in the newborn intensive care unit: Conversations and decisions
bioethics; conversation; decision making; ethics; neonatal intensive care unit; treatment withdrawal; active euthanasia; artificial ventilation; controlled study; critically ill patient; human; hydration; hypoxic ischemic encephalopathy; infant; Infant Newborn; Intensive Care Units; Intensive Care Units Neonatal; neonatologist; newborn; nutrition; resuscitation; review
The unexpected birth of a critically ill baby raises many ethical questions for neonatologists. Some of these are obviously ethical questions, about whether to attempt resuscitation, and, if the baby is resuscitated and survives, whether to continue life sustaining interventions. Other ethical decisions are more related to what to say rather than what to do. Although less obvious, they are equally as important, and may also have far-reaching ramifications. This essay presents the story of a newborn with profound hypoxic-ischemic encephalopathy, and reviews decisions regarding resuscitation, withdrawal of mechanical ventilation, withdrawal of medically administered nutrition and hydration, and active euthanasia. An overview of the ethical issues at work at each decision point is presented, as well as guidance regarding discussions with parents throughout the process, including specific wording. This may serve as a helpful guide for ethical deliberation, and helpful scripting for parental discussion, in similar cases.Copyright © 2023 Elsevier Ltd
Mercurio MR; Gillam L
Seminars in Fetal and Neonatal 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="http://doi.org/10.1016/j.siny.2023.101438" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2023.101438</a>
Advance Care Planning and Parent-Reported End-of-Life Outcomes in the Neonatal Intensive Care Unit
advance care planning; neonatal intensive care unit; Advance Care Planning; article; child; decision making; expectation; human; infant; Infant Newborn; outcome assessment; rank sum test; satisfaction; shared decision making
OBJECTIVE: This study aimed to evaluate the impact of advance care planning (ACP) on parent-reported end-of-life (EOL) outcomes in the neonatal intensive care unit (NICU). STUDY DESIGN: Single-center, cross-sectional mixed-methods survey study of bereaved parents who experienced the death of a child in the Boston Children's Hospital NICU between 2010 and 2021. Logistic regression, chi-square test, Fisher's exact test, and Wilcoxon rank-sum test were used to evaluate the relationship between ACP and parent-reported EOL outcomes. Qualitative content was analyzed through inductive coding. RESULT(S): A total of 40/146 (27%) of eligible parents responded to our survey. There was a significant association between ACP and improved EOL care processes and parental satisfaction with communication. Parents with ACP were more likely to report goal-concordant care and higher levels of perceived shared decision-making. Qualitatively, emerging themes in parents' descriptions of goal-concordant care included misaligned expectations and communication. Emerging themes for parental preparedness included infant symptoms, logistical aspects, impact on parents, and degrees of preparedness. For decisional regret, the primary theme was reevaluating supports. CONCLUSION(S): ACP is associated with improved EOL care outcomes and parents qualitatively conceptualize goal-concordant care, preparedness for their child's death, and decisional regret in nuanced ways. Families should have the opportunity to participate in ACP discussions that meet their unique communication and decision-making needs. KEY POINTS: . ACP is associated with improved parent-reported end-of-life outcomes.. . Parents conceptualize end-of-life care outcomes in nuanced ways.. . Families should have the opportunity to participate in ACP discussions that meet their unique needs..Copyright Thieme. All rights reserved.
Lin M; Williams D; Vitcov G; Sayeed S; DeCourcey DD; Wolfe J; Cummings C
American Journal of Perinatology
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/10.1055/s-0043-1768488" target="_blank" rel="noreferrer noopener">10.1055/s-0043-1768488</a>
Characteristics of Critically Ill Infants at the End of Life in the Neonatal Intensive Care Unit
Critical Illness; Intensive Care Units Neonatal; Aged; Child; Critical Illness; Death; Female; Humans; Infant; Infant Newborn; Intensive Care Units; Intensive Care Units Neonatal; Male; Palliative Care; Retrospective Studies
Objectives: About 16,000 infants die in the neonatal intensive care unit (NICU) each year with many experiencing invasive medical treatments and high number of symptoms.1 To inform better management, we characterized diagnoses, symptoms, and patterns of care among infants who died in the NICU. Method: Retrospective electronic medical record (EMR) review of 476 infants who died following admission to a large regional level IV NICU in the United States over a 10-year period. Demographic, symptom, diagnosis, treatment, and end-of-life characteristics were extracted. Results: About half of infants were male (55.9%, n = 266), average gestational age was 31.3 weeks (standard deviation [SD] = 6.5), and average age at death was 40.1 days (SD = 84.5; median = 12; range: 0-835). Race was documented for 65% of infants, and most were White (67.0%). One-third of infants (n = 138) were seen by fetal medicine. Most infants experienced pain through both the month and week before death (79.6%), however, infants with necrotizing enterocolitis had more symptoms in the week before death. Based on EMR, infants had more symptoms, and received more medical interventions and comfort measures during the week before death compared with the month prior. Only 35% (n = 166) received a palliative care referral. Conclusions: Although the medical profiles of infants who die in the NICU are complex, the overall number of symptoms was less than in older pediatric populations. For infants at high risk of mortality rate, providers should assess for common symptoms over time. To manage symptoms as effectively as possible, both timely and continuous communication with parents and early referral to palliative care are recommended.
Fortney CA; Baughcum AE; Garcia D; Winning AM; Humphrey L; Cistone N; Moscato EL; Keim MC; Nelin LD; Gerhardt CA
Journal of Palliative 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="http://doi.org/10.1089/jpm.2022.0408" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0408</a>
Associations between Music Therapy, Pain and Heart Rate for Children Receiving Palliative Care
Child; Child Preschool; Confidence Intervals; Convenience Sample; Descriptive Statistics; Female; Heart Rate; Human; In Infancy and Childhood; Infant; Infant Newborn; Male; Multimethod Studies; Music Therapy; Only Child; Pain; Palliative Care; Pediatric Care; Pretest-Posttest Design; Prevention and Control; Psychosocial Factors; Purposive Sample; Quality of Life; Scales; Summated Rating Scaling; Thematic Analysis; Therapy
Abstract Music therapy (MT) is a widely used non-pharmacological intervention in pediatric health care, an integral part of pediatric palliative care (PPC). Yet, there is a lack of evidence of efficacy, and best practices are not well established. The nature and extent of physiologic impacts of MT in PPC have not previously been reported. This study explores how MT contributes to psycho-physiological changes in children receiving palliative care. We used a convergent mixed-methods feasibility study with a pre–post design. MT sessions were delivered to children (0–18 years), who were registered with a statewide Pediatric Palliative Care Service. Pre–post measures of pain and heart rate were collected using validated and objective measures and analyzed using mixed-model analysis. Analysis of 36 MT sessions demonstrated a statistically significant reduction in pain scores and heart rate after MT sessions. Post measures of pain measured with Face, Legs, Activity, Cry, Consolability scale (FLACC scale) scores were −1.57 (95% confidence interval [CI] −2.31 to −0.83) and by Likert pain scale −2.03 (95% CI −2.79 to −1.27). Heart rate reduced by a mean of −7.6 beats per minute (95% CI −10.74 to −3.37). Five parents participated in semi-structured interviews. Following thematic analysis, two major themes emerged: (1) MT has a positive impact on physiological symptoms and (2) MT enhances the opportunity to experience joy. Results demonstrate the feasibility of study components and may inform future research design for a larger study. This research contributes to the limited evidence about non-pharmacological interventions enhancing the quality of life for children receiving PPC.
Delaney AM; Herbert AR; Bradford N; Bernard A
Music Therapy Perspectives
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/10.1093/mtp/miac003" target="_blank" rel="noreferrer noopener">10.1093/mtp/miac003</a>
Maternal-fetal surgery as part of pediatric palliative care
fetus surgery; palliative therapy; child; congenital diaphragm hernia; consultation; counseling; female; fetus; human; infant; Palliative Care; review; risk assessment; surgeon
Maternal-fetal surgical interventions have become a more common part of prenatal care. This third option, beside termination or post-natal interventions, complicates prenatal decision-making: while interventions may be lifesaving, survivors may face a life with disability. Pediatric palliative care (PPC) is more than end of life or hospice care, it aims at helping patients with complex medical conditions live well. In this paper, we briefly discuss maternal-fetal surgery, challenges regarding counseling and benefit-risk evaluation, argue that PPC should be a routine part of prenatal consultation, discuss the pivotal role of the maternal-fetal surgeon in the PCC-team, and finally discuss some of the ethical considerations of maternal-fetal surgery. We illustrate this with a case example of an infant diagnosed with congenital diaphragmatic hernia (CDH).Copyright © 2023
De Bie FR; Tate T; Antiel RM
Seminars in Fetal and Neonatal 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="http://doi.org/10.1016/j.siny.2023.101440" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2023.101440</a>
Context of a neonatal death affects parental perception of end-of-life care, anxiety and depression in the first year of bereavement
Bereavement; Perinatal Death; Terminal Care; Anxiety; Bereavement; Depression; Female; Humans; Infant; Infant Newborn; Parents/px [Psychology]; Perception; Prospective Studies; Terminal Care; Terminal Care/px [Psychology]
BACKGROUND: Neonatal death is often preceded by end-of-life medical decisions. This study aimed to determine whether the context of death - after a decision of withholding or withdrawing life-sustaining treatment (WWLST) or despite maximum care - was associated with subsequent risk of parental anxiety or depression. The secondary objective was to assess parents' perceptions of end-of-life care according to death context., METHODS: Prospective single center observational study of all neonatal deaths in a neonatal intensive care unit over a 5-year period. Data were collected during hospitalization and from face-to-face interviews with parents 3 months after the infant's death. Anxiety and depression were assessed using Hospital Anxiety and Depression Scale (HADS) questionnaires, completed by parents 5 and 15 months after death., RESULTS: Of 179 deaths, 115 (64%) occurred after the WWLST decision and 64 (36%) despite maximum care. Parental satisfaction with newborn care and received support by professionals and relatives was higher in the first condition. Sixty-one percent of parents (109/179) attended the 3-month interview, with the distribution between groups very close to that of hospitalization. The completion rates of the HADS questionnaires by the parents who attended the 3-month interview were 75% (82/109) at 5 months and 65% (71/109) at 15 months. HADS scores at 5 months were consistent with anxiety in at least one parent in 73% (60/82) of cases and with depression in 50% (41/82). At 15 months, these rates were, respectively, 63% (45/71) and 28% (20/71). Risk of depression at 5 months was lower after a WWLST decision (OR 0.35 [0.14, 0.88], p = 0.02). Explicit parental agreement with the WWLST decision had an equivocal impact on the risk of anxiety at 5 months, being higher when expressed during hospitalization, but not at the 3-month interview., CONCLUSIONS: Context of death has a significant impact on the emotional experience of parents after neonatal loss, which underlines the importance of systematic follow-up conversations with bereaved parents. Copyright © 2023. The Author(s).
Cambonie G; Desage C; Thaller P; Lemaitre A; de Balanda KB; Combes C; Gavotto A
BMC Palliative Care
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/10.1186/s12904-023-01183-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01183-8</a>
Paediatric palliative care in the NICU: A new era of integration
neonatal intensive care unit; palliative therapy; child; female; human; human experiment; infant; male; newborn; Palliative Care; review; skill; social needs; standard; terminal care
We are entering a new era of integration between neonatal medicine and paediatric palliative care, with increasing recognition that the role and skills of palliative care extend beyond care of only the terminally ill infant. This paper addresses the principles of paediatric palliative care and how they apply in the NICU, considers who provides palliative care in this setting and outlines the key components of care. We consider how the international standards of palliative care pertain to neonatal medicine and how a fully integrated approach to care may be realised across these two disciplines. Palliative care is so much more than end-of-life care, offering a proactive and holistic approach which addresses the physical, emotional, spiritual and social needs of the infant and family. This is a truly interdisciplinary endeavour, relying on a harmonisation of the skills from both the neonatal and palliative care teams to deliver high-quality coordinated care.Copyright © 2023
Bertaud S; Montgomery AM; Craig F
Seminars in Fetal and Neonatal 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="http://doi.org/10.1016/j.siny.2023.101436" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2023.101436</a>
Data-driven approach to understanding neonatal palliative care needs in England and Wales: a population-based study 2015-2020
England; neonatology; palliative therapy; Wales; article; England; female; human; infant; Infant Newborn; long term survival; major clinical study; male; morbidity; newborn; newborn care; Palliative Care; perinatal care; Wales
Abstract Objective To quantify admissions to neonatal units in England and Wales with potential need for palliative care. Design, setting and patients Diagnoses and clinical attributes indicating a high likelihood of requiring palliative care were mapped to categories within the British Association of Perinatal Medicine’s (BAPM) framework on palliative care. We extracted data from the National Neonatal Research Database on all babies born and admitted to neonatal units in England and Wales 2015–2020. Outcomes The number and proportion of babies meeting BAPM categories, their discharge outcomes and the characteristics of babies who died during neonatal care but did not fulfil any BAPM category. Results 12 123/574 954 (2.1%) babies met one or more BAPM category: 6239/12 123 (51%) conformed to BAPM category 4 (postnatal conditions with high risk of severe impairment), 3796 (31%) to category 2 (antenatal/postnatal diagnosis with high risk of significant morbidity or death), 1399 (12%) to category 3 (born at margin of viability) and 288 (2%) to category 1 (antenatal/postnatal diagnosis not compatible with long-term survival); 401 babies (3%) met criteria for multiple categories. 6814/12 123 (56%) were discharged home, 2385 (20%) were discharged to other settings and 2914 (24%) died before neonatal discharge. 3000/5914 (51%) babies who died during neonatal care did not conform to any BAPM category. Of these, 2630/3000 (88%) were born preterm. Conclusions At least 2% of babies admitted to neonatal units had palliative care needs according to existing BAPM categories; most survived to discharge. Of deaths, 51% were not captured by the BAPM categories; most were extremely preterm.
Harnden F; Lanoue J; Modi N; Uthaya SN; Battersby C
Archives of Disease in Childhood
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/10.1136/archdischild-2022-325157" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2022-325157</a>
How Do Hospitalised Children Die? The Context of Death and End-Of-Life Decision-Making
intensive care unit; Child; child; Decision Making; article; controlled study; female; human; major clinical study; male; resuscitation; retrospective study; palliative therapy; observational study; advance care planning; documentation; Only Child; nervous system; life sustaining treatment; cardiovascular disease; respiratory tract disease; infant; drug withdrawal; demographics; medical record; hospitalized child; pediatric patient; decision making; childhood mortality; treatment withdrawal
Serrano-Pejenaute I; Carmona-Nunez A; Zorrilla-Sarriegui A; Martin-Irazabal G; Lopez-Bayon J; Sanchez-Echaniz J; Astigarraga I
Journal of Paediatrics and Child Health
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/10.1111/jpc.16354" target="_blank" rel="noreferrer noopener">10.1111/jpc.16354</a>
George's Lullaby: A Case Study of the Use of Music Therapy to Support Parents and Their Infant on a Palliative Pathway
Infant; Intensive Care Units Neonatal; Music Therapy; Utilization; United Kingdom; In Infancy and Childhood; Deficiency; Parent-Infant Bonding; Pulmonary Surfactants
Having an infant diagnosed with a life-limiting condition is a stressful time for parents and has been shown to have an impact on parental mental health. Music Therapy, when provided by an HCPC registered Music Therapist with enhanced Neonatal training, can empower parents to share culturally based, personal music with their infant to assist with developmental care and create precious memories. These positive experiences are vital to hold in order to continue bonds after death and assist in processing grief. This case study presents a full term infant with surfactant deficiency (R192). Weekly Music Therapy was provided on the Neonatal Intensive Care Unit (NICU) with parents and infant following the Rhythm Breath Lullaby: First Sounds approach. It was then used again at the end of the infant's life at the family home. Music Therapy provided a focus for the family while on the unit and supported family integrated developmental care of the infant. The relationship developed, a long with the music shared, then supported the family emotionally and physically as parent's held their baby at end of life. To our knowledge this is the first time Music Therapy has been provided on the NICU through to end of life at home with the same Music Therapist. Music Therapy on Neonatal Unit is uncommon in the UK but has potential to support infant comfort whilst supporting the sharing of parent identities. Music Therapy has the potential to provide a focus that enables parents, who have a heightened awareness of the proximity of loss, to interpret, play and comfort their infant.
Ormston K; Rose E; Gallagher K
Journal of Neonatal Nursing
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/10.1016/j.jnn.2022.01.011" target="_blank" rel="noreferrer noopener">10.1016/j.jnn.2022.01.011</a>
The Needs of Children Receiving End of Life Care and the Impact of a Paediatric Palliative Care Team: A Retrospective Cohort Study
Male; Female; Humans; Adolescent; Child; Child Preschool; Infant; Length of Stay; Retrospective Studies; Palliative Care; Terminal Care; Chronic Disease; Cohort Studies; Tertiary Care Centers; Paediatric palliative care; End of life; Palliative Care/methods; Health resources; Complex chronic conditions; Terminal Care/methods
Nogueira A; Correia D; Loureiro M; Gomes B; Cancelinha C
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/s00431-022-04683-6" target="_blank" rel="noreferrer noopener">10.1007/s00431-022-04683-6</a>
It Was a Shared Duty': Bereaved Fathers' Perspectives, Experiences and Practices in Relation to their Partner's Lactation after Infant Death
Male; Bereavement; Infant; Palliative Care; Intensive Care Units Neonatal; Interpersonal Relations; Australia; Purposive Sample; Qualitative Studies; Health Policy; Data Analysis Software; Exploratory Research; Human; Descriptive Statistics; Phenomenological Research; Life Experiences; Thematic Analysis; Perinatal Death; Psychosocial Factors; Semi-Structured Interview; Milk Human; Donor Milk; Infant Death; Lactates; Lactation; Lactic Acid; Open-Ended Questionnaires; Paternal Attitudes; Paternal Role
This exploratory study targets a significant gap in the lactation and bereavement literature by exploring bereaved fathers' experiences, perspectives and practices in relation to their partner's lactation after stillbirth, neonatal or infant death. Semi-structured interviews were conducted with seven bereaved fathers in two Australian state/ territory jurisdictions. Purposive sampling ensured the partners of five of the fathers had been involved in bereaved breastmilk donation to a human milk bank. Thematic data analysis identified key themes that drew attention to the significant grief experienced by fathers and highlighted: (i) breastmilk and infant feeding holding significant meaning for some fathers especially within the neonatal intensive care or palliative care settings, (ii) the impact of diverse lactation management options on the awareness and involvement of fathers in their partner's lactation after infant death, (iii) fathers' provision of significant care and support for partners participating in bereaved breastmilk donation, (iv) bereaved breastmilk donation positively impacting some fathers' grief and meaning- making, and (v) bereaved families' requirement for enhanced lactation care, information and support. Results indicate the need for an enhanced focus on family-centred bereaved lactation care and acknowledgement of the positive role that bereaved breastmilk donation may have for both mothers and fathers following infant loss.
Noble-Carr D; Carroll K; Copland S; Waldby C
Breastfeeding Review
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/" target="_blank" rel="noreferrer noopener"></a>
Uncertainty and Perinatal Post?Traumatic Stress Disorder in the Neonatal Intensive Care Unit
Male; Female; Infant; Palliative Care; Parents; Infant Newborn; Questionnaires; Prospective Studies; Intensive Care Units Neonatal; Hospitalization; Mental Disorders; Intensive Care Units; Patient Discharge; Data Analysis Software; Human; Descriptive Statistics; Stress Disorders Post-Traumatic; Perinatal Care; Uncertainty; Scales; Psychosocial Factors; Comparative Studies; Coefficient Alpha; Summated Rating Scaling; After Care; Hypothesis; Parent-Infant Relations; Psychologists; Reliability and Validity
Parents of infants in the neonatal intensive care unit (NICU) are at increased risk of developing perinatal post?traumatic stress disorder (PPTSD), a mental health condition known to interfere with healthy parental and infant attachment. Feelings of uncertainty about illness have been theorized as an antecedent to post?traumatic stress, however the relationship has not been explored in parents of infants requiring care in the NICU. The purpose of this prospective study was to explore parental uncertainty during and after NICU discharge and the relationship between uncertainty and PPTSD. The sample consisted of 319 parents during NICU hospitalization and 245 parents at 3 months postdischarge. Parents who screened positive for PPTSD 3 months after hospital discharge reported more uncertainty both while in the NICU and 3 months after hospital discharge (p < 0.001). In parents with a personal or family history of mental illness, the moderated/mediating structural probit analysis showed no direct or indirect effect of uncertainty during hospitalization or at 3 months after hospital discharge on screening positive for PPTSD. In parents who did not report personal or family history of mental illness, uncertainty at 3 months after hospital discharge had a direct effect (b = 0.678, p < 0.001) and indirect mediating effect (b = 0.276, p < 0.001) on screening positive for PPTSD. The results provide actionable implications for mental health and NICU providers: (1) routine screening for uncertainty and risk factors including previous personal and family history of mental illness, and (2) the development of NICU follow?up support services to mitigate risk for PPTSD.
Malin KJ; Johnson TS; Brown RL; Leuthner J; Malnory M; White?Traut R; Rholl E; Lagatta J
Research in Nursing and Health
2022
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<a href="http://doi.org/10.1002/nur.22261" target="_blank" rel="noreferrer noopener">10.1002/nur.22261</a>
Please Look at My Baby - When Clinicians Should Say the Word "Hospice"
Humans; Infant; Communication; Hospices; Physician-Patient Relations; Truth Disclosure; Hospice Care
For the first time since he was born, we looked at our son as a baby who had withstood endless medical interventions. Rather than taking each new diagnosis in stride, we stopped to reflect. [...]
Grinberg G
The New England Journal of 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="http://doi.org/10.1056/NEJMp2213031" target="_blank" rel="noreferrer noopener">10.1056/NEJMp2213031</a>
Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease
intensive care unit; Palliative Care; child; article; female; human; major clinical study; male; newborn; retrospective study; advance care planning; palliative therapy; medical decision making; pediatrics; artificial ventilation; terminal care; hospitalization; information technology; hospital patient; patient referral; life sustaining treatment; congenital heart disease; consultation; mortality; pulmonary hypertension; infant; hospitalized child; length of stay; pediatric patient; extracorporeal oxygenation; disease course; cardiomyopathy; heart disease; catheterization; myocarditis; myopericarditis; pericarditis
Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC referral at the time of heart disease diagnosis provides early involvement in the disease trajectory, allowing PPC teams to longitudinally support patients and families with symptom management, complex medical decision-making, and advanced care planning. We analyzed 113 hospitalized pediatric patients with a primary diagnosis of heart disease and a PPC consult to identify timing of first PPC consultation in relation to diagnosis, complex chronic conditions (CCC), and death. The median age of heart disease diagnosis was 0 days with a median of two CCCs while PPC consultation did not occur until a median age of 77 days with a median of four CCCs. Median time between PPC consult and death was 33 days (interquartile range: 7-128). Death often occurred in the intensive care unit (n = 36, 67%), and the most common mode was withdrawal of life-sustaining therapies (n = 31, 57%). PPC referral often occurred in the context of medical complexity and prolonged hospitalization. Referral close to the time of heart disease diagnosis would allow patients and families to fully utilize PPC benefits that exist outside of end-of-life care and may influence the mode and location of death. PPC consultation should be considered at the time of heart disease diagnosis, especially in neonates and infants with CCCs.Copyright © 2023 Georg Thieme Verlag. All rights reserved.
Green DJ; Bennett E; Olson LM; Wawrzynski S; Bodily S; Moore D; Mansfield KJ; Wilkins V; Cook L; Delgado-Corcoran C
Journal of Pediatric Intensive Care
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/10.1055/s-0041-1730916" target="_blank" rel="noreferrer noopener">10.1055/s-0041-1730916</a>
Social Workers in Pediatric Intensive Care Units: A Physician Perspective
child; article; female; human; male; retrospective study; Intensive Care Units; palliative therapy; pediatric intensive care unit; follow up; consultation; hospitalization; adolescent; infant; social problem; social worker; counseling; physician; Social Work; child psychiatry; abuse; Turkey (republic); child custody; child neglect; community mental health center; hospital information system
Objective: The role of social workers, who are beginning to be integrated into the entire health system, is now becoming more and more understood. In our study, we aimed to discuss the duties of social workers at PICU, the results of their work in harmony with the physicians, and their importance for the intensive care team. Material(s) and Method(s): Sixtysix children aged between 1 month and 18 years old who were asked for social service consultation between January 2019 and December 2020 at our hospital's PICU were included in the study. The age, diagnosis, sex, marital status (married-divorced), number of days of hospitalization, number of recurrent hospitalization, reason and result of consultation, necessity of psychiatric consultation and frequency of follow-up were retrospectively examined and recorded through the hospital information system. The collected data were analyzed by means of SPSS (version 22.0, SPSS Inc. Chicago, IL, USA). Result(s): The median age (months) (min-max) was found to be 172, 50 (6-209), and the median (min-max) duration of hospitalization (days) was found to be 2 (1-76). Family neglect was found to be the most common cause of social work indications (77.3%; n: 51). The number of patients who were given social counseling and referred to a psychiatrist was 25 (37.9%). Family neglect and abuse were detected in 5 (7.6%) patients. Apart from these, it was observed that problems such as drug supply, financial support, ID application, home device supply assistance, care center approvals and child custody were solved in each 1 (1.5%) patient. Conclusion(s): The inclusion of social workers in the children's intensive care unit teams can also prevent many social problems that can be neglected otherwise. Physicians are more focused on patient treatment, so we believe that it will be beneficial to question the family and social status of patients together with a social service unit and specialists integrated into children's intensive care units.Copyright © 2022 Ankara Pediatric Hematology Oncology Training and Research Hospital. All rights reserved.
Atakul G; Aslan K; Demircan TO; Ozhan P; Caglar A
Turkish Journal of Pediatric Disease
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/10.12956/tchd.933708" target="_blank" rel="noreferrer noopener">10.12956/tchd.933708</a>
Evaluation of children with severe neurological impairment admitted to hospital with pain and irritability
Adolescent; Child; Child, Preschool; Children; Clinical pathway; Emergency Service, Hospital; Hospitalization; Hospitals, Pediatric; Humans; Infant; Infant, Newborn; Pain; Retrospective Studies; Severe neurological impairment; PIUO
BACKGROUND: Pain is the most common symptom reported by caregivers of children with severe neurological impairment (SNI), a descriptive term for children with disorders affecting the neurological system across multiple domains. In SNI, cognition, communication, and motor skills are impaired and other organ systems are impacted. Pain is difficult to identify and treat in children with SNI because of communication impairment. When a clear cause of pain is not determined, the term "Pain and Irritability of Unknown Origin (PIUO)" is used to describe pain-like behaviours. This study explores the clinical care received by children with SNI admitted to hospital after presenting to the emergency department of a tertiary pediatric hospital with pain or irritability. Findings are compared to the approach suggested in the PIUO pathway, an integrated clinical pathway for identifying and treating underlying causes of pain and irritability in children with complex conditions and limited communication. METHODS: Retrospective chart review of children (age 0 to 18 years inclusive) with diagnoses compatible with SNI presenting with pain, irritability, and/or unexplained crying that required hospitalization between January 1st, 2019 and December 31st, 2019. Descriptive statistics were used to analyze the clinical care received by children in whom a source of pain was identified or not. In children for whom no cause of pain was identified, investigations completed were compared to the PIUO pathway. RESULTS: Eight hospital admissions of six unique children were included for data analysis. A cause for pain and irritability was identified and resolved in three patients. In children with PIUO, there were gaps in history taking, physical examination, and investigations that might have allowed a cause of pain and irritability to be found. Pain was assessed using the r-FLACC pain scale and varying medications for pain/irritability were given during each hospital admission. CONCLUSION: Children with SNI admitted to a tertiary pediatric hospital did not undergo a standardized approach to identifying a cause of pain and irritability. Future efforts should explore the effectiveness of the PIUO pathway, a standardized approach to reducing and resolving pain in children with SNI.
Fishman I; Siden H; Vadeboncoeur C
BMC Pediatrics
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/10.1186/s12887-022-03632-4" target="_blank" rel="noreferrer noopener">10.1186/s12887-022-03632-4</a>
Medicinal cannabis in children and adolescents with autism spectrum disorder: A scoping review
Adolescent; anxiety; autism spectrum disorder; Autism Spectrum Disorder; behaviour; Child; Child, Preschool; communication; Humans; hyperactivity; Infant; Infant, Newborn; Medical Marijuana; Parents; Prospective Studies; Retrospective Studies; Medicinal Cannabis
BACKGROUND: Autism spectrum disorder (ASD) is a neurodevelopmental condition estimated to affect 1 in 66 children in Canada and 1 in 270 individuals worldwide. As effective therapies for the management of ASD core and associated symptoms are limited, parents are increasingly turning to clinicians for advice regarding the use of medicinal cannabis to manage behavioural disturbances. OBJECTIVE: The objective of this scoping review was to identify and map symptoms, outcomes and adverse events related to medicinal cannabis treatment for ASD-related behaviours. METHODS: Ovid MEDLINE, Embase, CINAHL, PsycInfo, Web of Science Core Collection, Google Scholar and grey literature sources were searched up to 5 January 2020 for studies. Included studies met the following criteria: (1) investigate the use of medicinal cannabis, (2) at least 50% participants had ASD, (3) at least 50% of the study population was 0-18 years old and (4) any study design (published or unpublished). RESULTS: We identified eight completed and five ongoing studies meeting the inclusion criteria. All studies reported substantial behaviour and symptom improvement on medicinal cannabis, with 61% to 93% of subjects showing benefit. In the three studies reporting on concomitant psychotropic medication usage and with cannabis use, up to 80% of participants observed a reduction in concurrent medication use. Adverse events related to cannabis use were reported in up to 27% of participants related, and two participants had psychotic events. CONCLUSIONS: Early reports regarding medicinal cannabis in paediatric ASD symptom management are presented as positive; the evidence, however, is limited to very few retrospective cohort and observational studies. Evidence of safety and efficacy from prospective clinical trials is needed.
Fletcher S; Pawliuk C; Ip A; Huh L; Rassekh SR; Oberlander TF; Siden H
Child: Care, Health and Development
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/10.1111/cch.12909" target="_blank" rel="noreferrer noopener">10.1111/cch.12909</a>
Vulnerability and Agency across Treatment-Seeking Journeys for Acutely Ill Children: How Family Members Navigate Complex Healthcare Before, During and After Hospitalisation in A Rural Kenyan Setting
Adult; Child Preschool; Cohort Studies; Female; Humans; Infant; Male; Qualitative Research; Prospective Studies; Family; Continuity of Patient Care; Hospitalization; Child Mortality; Social Support; Acute Disease; Caregivers; Health Facilities; Family Characteristics; Vulnerable Populations; Rural Population; Kenya/epidemiology; Agency; Child Health; Childhood acute illness; Delivery of Health Care/standards; Treatment-seeking; Vulnerability
BACKGROUND: Child mortality rates during hospitalisation for acute illness and after discharge are unacceptably high in many under-resourced settings. Childhood vulnerability to recurrent illness, and death, is linked to their families' situations and ability to make choices and act (their agency). We examined vulnerability and agency across treatment-seeking journeys for acutely ill children and considered the implications for policy and practice. METHOD: A qualitative sub-study was embedded within the prospective CHAIN Network cohort study, which is investigating mechanisms of inpatient and post-hospital discharge mortality among acutely ill young children across a spectrum of nutritional status. Primary data were collected from household members of 20 purposively selected cohort children over 18 months through formal interviews (total n = 74), complemented by informal discussions and observations. Data were analysed using narrative and thematic approaches. RESULTS: Treatment-seeking pathways were often long and complex, particularly for children diagnosed as severely malnourished. Family members' stories reveal that children's carers, usually mothers, navigate diverse challenges related to intersecting vulnerabilities at individual, household and facility levels. Specific challenges include the costs of treatment-seeking, confusing and conflicting messaging on appropriate care and nutrition, and poor continuity of care. Strong power inequities were observed between family members and health staff, with many mothers feeling blamed for their child's condition. Caregivers' agency, as demonstrated in decision-making and actions, often drew on the social support of others but was significantly constrained by their situation and broader structural drivers. CONCLUSION: To support children's care and recovery, health systems must be more responsive to the needs of families facing multiple and interacting vulnerabilities. Reducing incurred treatment costs, improving interpersonal quality of care, and strengthening continuity of care across facilities is essential. Promising interventions need to be co-designed with community representatives and health providers and carefully tested for unintended negative consequences and potential for sustainable scale-up.
Zakayo SM; Njeru RW; Sanga G; Kimani MN; Charo A; Muraya K; Sarma H; Uddin MF; Berkley JA; Walson JL; Kelley M; Marsh V; Molyneux S
International Journal for Equity in Health
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/10.1186/s12939-020-01252-x" target="_blank" rel="noreferrer noopener">10.1186/s12939-020-01252-x</a>
The Marital Implications of Bereavement: Child Death and Intimate Partner Violence in West and Central Africa
Child; Adolescent; Adult; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Parents/psychology; Middle Aged; Young Adult; Risk Factors; Child Mortality; Bereavement; Child mortality; Intimate partner violence; West and Central Africa; Africa Central; Africa Western; Intimate Partner Violence/statistics & numerical data; Marriage/statistics & numerical data
In high-mortality contexts, research examining the effects of child mortality has focused almost exclusively on couples' fertility responses while overlooking other potential family consequences. Using nationally representative survey data from 13 West and Central African countries, we estimate multilevel discrete-time hazard models to determine how women's risk of intimate partner violence (IPV) varies with the death of children. We assess heterogeneity in this association across two surrounding circumstances: children's age at death and regional prevalence of child bereavement. Findings indicate that the risk of IPV initiation rises with the death of children under age 5-for whom women are most intensely responsible-but not with the death of older children. The effect of young child bereavement is most pronounced in regions where it is least prevalent among mothers-a finding not explained by concomitant regional variation in gender inequality, family norms, and infrastructural development. These findings highlight the importance of child mortality for family outcomes beyond fertility in the African context and demonstrate the prominent role of the broader mortality context in shaping these implications.
Weitzman A; Smith-Greenaway E
Demography
2020
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<a href="http://doi.org/10.1007/s13524-019-00846-7" target="_blank" rel="noreferrer noopener">10.1007/s13524-019-00846-7</a>
Sibling Mortality Burden in Low-Income Countries: A Descriptive Analysis of Sibling Death in Africa, Asia, and Latin America and the Caribbean
Child; Adolescent; Adult; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Middle Aged; Young Adult; Developing Countries; Socioeconomic Factors; Latin America; Asia; Poverty; Cost of Illness; Global Health; Siblings; Caribbean Region; Mortality/trends; West Indies
In high-income countries, emerging research suggests sibling bereavement can have significant health and life course consequences for young people. Yet, we know far less about its burden in lower-income countries. Due to higher fertility and mortality in lower-income countries, the level, timing, intensity, and circumstances surrounding sibling mortality are likely to follow patterns distinct from those in higher-income settings. Thus, in this study, we offer a descriptive overview of sibling death in 43 countries across sub-Saharan Africa, South and Southeast Asia, and Latin America and the Caribbean. Specifically, we analyze Demographic and Health Survey data from nationally representative samples of 352,930 15- to 34-year-old women, born between 1985 and 2003, to document experiences of sibling death before age 25. On average, roughly one-third of individuals report a deceased sibling in these countries; estimates reach 40-50% of respondents in multiple African countries, particularly those that have experienced conflict and war. Although some sibling deaths occurred before the focal respondent was born, most bereaved individuals recalled a death during their lifetime-often in late childhood/early adolescence. High proportions of bereaved respondents report multiple sibling deaths, highlighting the clustering of deaths within families. Even so, bereaved individuals tend to come from large families and thus frequently have a comparable number of surviving siblings as people who never experienced a sibling die. Together, the results offer a window into global inequality in childhood experiences, and they attest to the need for research that explores the implications of sibling mortality for young people in world regions where the experience is concentrated.
Smith-Greenaway E; Weitzman A
PLoS One
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/10.1371/journal.pone.0236498" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0236498</a>
End-Of-Life Practices in Patients Admitted to Pediatric Intensive Care Units in Brazil: A Retrospective Study
Child; Humans; Infant; Retrospective Studies; Terminal Care; Length of Stay; Death; Death; Life Support Care; Mortality; Intensive Care Units Pediatric; Brazil/epidemiology; Child care; Intensive care units pediatric; Palliative care; Terminal care
OBJECTIVE: To determine the prevalence of life support limitation (LSL) in patients who died after at least 24h of a pediatric intensive care unit (PICU) stay, parent participation and to describe how this type of care is delivered. METHODS: Retrospective cohort study in a tertiary PICU at a university hospital in Brazil. All patients aged 1 month to 18 years who died were eligible for inclusion. The exclusion criteria were those brain death and death within 24h of admission. RESULTS: 53 patients were included in the study. The prevalence of a LSL report was 45.3%. Out of 24 patients with a report of LSL on their medical records only 1 did not have a do-not-resuscitate order. Half of the patients with a report of LSL had life support withdrawn. The length of their PICU stay, age, presence of parents at the time of death, and severity on admission, calculated by the Pediatric Index of Mortality 2, were higher in patients with a report of LSL. Compared with other historical cohorts, there was a clear increase in the prevalence of LSL and, most importantly, a change in how limitations are carried out, with a high prevalence of parental participation and an increase in withdrawal of life support. CONCLUSIONS: LSLs were associated with older and more severely ill patients, with a high prevalence of family participation in this process. The historical comparison showed an increase in LSL and in the withdrawal of life support.
Furtado RA; Tonial CT; Costa CAD; Andrades GRH; Crestani F; Bruno F; Fiori HH; Piva JP; Garcia PCR
The Journal of Pediatrics
2021
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<a href="http://doi.org/10.1016/j.jped.2020.10.017" target="_blank" rel="noreferrer noopener">10.1016/j.jped.2020.10.017</a>
Integrating a Palliative Approach into the Healthcare provided by the French-African Pediatric Oncology Group's Pilot Units. Insights from a 3-year Training Program
Child; Palliative care; Adolescent; Child Preschool; Humans; Infant; Infant Newborn; Pediatrics; France; Palliative Care; Pediatrics/education; International Cooperation; Pain Management; Training; Africa; Oncology; Patient Care Team; Education Medical Continuing/methods/organization & administration; French-speaking Africa; Medical Oncology/education
Working alongside local stakeholders, members of the French-African Pediatric Oncology Group developed a 3-year program to train pediatric oncology teams from 15 French-speaking countries in Africa in using analgesics and providing palliative care. This program was rolled out in three phases: initial training, in situ assessment, and advanced training in selected topics. To access this program, multidisciplinary teams had to come up with a project to improve their existing palliative care and pain management practices, and commit themselves to implementing it. All the teams invited agreed to take part in the program, which explicitly broached a subject that is often avoided in oncology teaching. The first phase was rolled out in 2017, with 65 trainees from 19 units attending one of three sessions held in Dakar, Senegal, Abidjan, Cote d'Ivoire, and Rabat, Morocco. The subsequent assessment revealed that only half the teams had started to implement their projects. The advanced training phase was therefore adjusted accordingly. A collective training session held in Marseille was attended by 15 trainees from seven teams whose projects were already underway, while in situ mentoring was provided for six other teams, through French-African twinnings in four cases. The length and openness of the program meant that we were able to identify and share the units' diverse realities, and fine-tune their projects accordingly, as well as plan ways of continuing the training both locally and collectively. Copyright © 2020 French Society of Pediatrics
Edan C; Yao AJJ; Hessissen L; Moreira C; Viallard ML; Poulain P; Calmanti S; Thinlot C; Aubier F; Doucot MS; Gagnepain-Lacheteau A; Patte C
Archives de Pediatrie
2021
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<a href="http://doi.org/10.1016/j.arcped.2020.12.002" target="_blank" rel="noreferrer noopener">10.1016/j.arcped.2020.12.002</a>
Coronavirus Disease-19 Deaths among Children and Adolescents in an Area of Northeast, Brazil: Why So Many?
Child; Adolescent; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Comorbidity; Children; Intensive Care Units; Age Distribution; Adolescents; Hospitalization/statistics & numerical data; Brazil/epidemiology; Mortality; deaths; Covid-19; mortality; Deaths; adolescents; children; covid-19; COVID-19/mortality
OBJECTIVE: To describe COVID-19 deaths among children and adolescents in Sergipe, Brazil. METHODS: Ecological study of all COVID-19 reported cases and deaths occurring in children and adolescents <19 years of age in Sergipe reported by the health surveillance and mortality information systems of Sergipe's Health Secretary and hospital records. RESULTS: 37 deaths of children <19 years old were reported up to 30(th) September 2020, corresponding to 4.87 deaths for 100,000 population <19 years old. Most deaths occurred among infants (44.1/100,000), and this age group had the highest case fatality rate (15.3 %). Most children had comorbidities such as chronic neurological diseases (n=7; 19%) and prematurity (n=4; 11%). Most children who died (n=18; 49%) were not admitted to intensive care units (ICU). CONCLUSION: COVID-19 mortality in children and adolescents in Sergipe was higher than in other Brazilian states and in high-income countries. A large proportion of the deaths occurred among children with co-morbidities and a minority of children were admitted to ICU, reflecting the limited provision of such beds in the State. Newborns and infants are a high-risk group that must have priority in health public policy.
de Siqueira ALA; Cristina FVS; Lima SPR; Santana SV; Cristina FLD; Eduardo CL; Queiroz GR
Tropical Medicine and International Health
2020
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<a href="http://doi.org/10.1111/tmi.13529" target="_blank" rel="noreferrer noopener">10.1111/tmi.13529</a>
Pediatric Palliative Care for Children with Cancer in a Children's Tertiary Hospital in China: Six-Year Experience of a Pediatric Palliative Care Service
adolescent; child; infant; palliative care; China; neoplasms
Background: Pediatric palliative care (PPC) does not meet current needs, particularly in low- and middle-income countries. Objective: We evaluated the first PPC team to serve patients with cancer in a tertiary children's hospital in China. Design: Single-center retrospective study. Setting/Participants: The core team members included oncologists, nurses, and a social worker. The team delivered palliative care through the outpatient clinic, consultations, a 24/7 hotline, and a hospice room located in the observation ward. Patients were referred by pediatric oncologists. We analyzed data for 92 children (54 boys and 38 girls; aged 7 months to 16 years) who required palliative care from August 2012 to August 2018. The most common primary diseases were leukemia and neuroblastoma. Measurements: We investigated the time from referral to death, symptoms during the prior month, the effects of informing children above eight years, and family satisfaction. Results: Among 88 deaths, the median time from referral to death was 17 (range 1-218) days. Most children had multiple symptoms (mean ± standard deviation 4.2 ± 3.2 per child). The most common symptoms in the last month of life were pain, loss of appetite, fatigue, fever, and dyspnea. Children above eight years who were not informed about their condition experienced more anxiety or depression. All families were satisfied with the services. Conclusions: The palliative care counseling team is feasible and could be complementary to conventional medicine in caring for children with life-limiting illnesses. This model has an important role in PPC in China or developing countries with scarce medical resources.
Zhang A; Bing L; Mi Q; Zhou F; Wang J
Palliative Medicine Reports
2021
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<a href="http://doi.org/10.1089/pmr.2020.0030" target="_blank" rel="noreferrer noopener">10.1089/pmr.2020.0030</a>
Utilization of a Prenatal Palliative Care Consultation Pathway for Congenital Heart Disease
Heart Defects; Congenital; Palliative Care; Child; Female; Heart Defects; Congenital Diagnosis; Heart Defects; Congenital Therapy; Human; Infant; Palliative Care; Palliative Care Psychology; Parents Psychology; Pregnancy; Referral and Consultation; Retrospective Study
Abstract
Over 4 decades, short- and long-term survival for children with congenital heart disease (CHD) has significantly increased. Those with complex CHD have a 1-year mortality rate of approximately 25%. Prenatal access to palliative care ensures a comprehensive approach to the infant's physical, emotional, spiritual, and psychosocial well-being and offers enhanced support for parents and families while providing an interprofessional approach to care. Pediatric cardiac provider attitudes, knowledge, patterns of prenatal palliative care, and consultation for fetuses with complex heart disease to guide increased and appropriate prenatal consultation were explored for a quality improvement project completed at a single institution. A retrospective cardiac database review identified that 21.5% of maternal patients seen prenatally and carrying a fetus with complex CHD would have qualified for prenatal palliative care consultation. To increase prenatal palliative care consultation, a pathway for referral was developed. A pre-evaluation of pediatric cardiac provider attitudes regarding palliative care was measured. Survey data informed the intervention phase of prenatal palliative care educational material development, which was presented to pediatric cardiac providers. The number of prenatal palliative care consults was tracked. A postintervention survey completed by pediatric cardiac providers showed increased understanding and utilization of palliative care for comfort and support and not just reserved for death preparation. Greater than 93% agreed or strongly agreed that they gained a better understanding of appropriate use of palliative/supportive care. As pediatric cardiac providers become more knowledgeable about early integration of palliative care, parents and infants will benefit greatly from referrals and initiation of palliative care at the time of prenatal diagnosis.
Mikal M; Gandhi R; Walsh SM
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.0000000000000917" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000917</a>
Neonatal Palliative Care: Assessing the Nurses Educational Needs for Terminally Ill Patients
Nursing Staff; Palliative Care; Child; Cross-Sectional Studies; Education; Nursing; Female; Human; Infant; Newborn; Male; Palliative Care; Surveys and Questionnaires; Terminally Ill
BACKGROUND: For terminally sick neonates and their families, it's crucial to provide holistic nursing care that incorporates both curative and palliative care as much as feasible. It is well known that the biggest obstacle to delivering palliative care for neonatal children is a lack of training for nurses. Aim: The aim of this research is to investigate the experiences of nurses who provide care for neonates who are terminally ill as well as their educational requirements for neonatal palliative care. METHOD: A cross-sectional descriptive study was conducted among 200 nurses working in a tertiary center providing care for terminally ill neonates in Saudi Arabia. Data was collected from using Neonatal Palliative Care Questionnaire (QNPC) from January 2021 to March 2021. RESULTS: Two hundred nurses were surveyed (the response rate was 79%). The mean age of the 158 participants was 35.67 (standard deviation (SD): 7.43), and the majority were female (151; 95.6%). The majority were bachelor's holders (119; 75.3%), with more than 5 years of experience in providing care for neonates (100; 63.3%). Most of the participants reported not receiving any education about palliative care (115; 72.8%). Nurses reported a moderate level of experience in all areas of neonatal palliative care. The total mean score of palliative care experiences of neonates was 3.42 (SD: 1.35). However, the majority of nurses reported little experience discussing the transition period to palliative care for neonates 2.95 (SD: 1.93), the discussion of code status (DNR) during terminal illness of neonates 3.11 (SD: 1.54) and spiritual support 2.90 (SD: 1.55). CONCLUSION: The assessment of the fundamental skills of neonatal palliative care by nurses was insufficient. To enhance the quality of care, it is crucial to incorporate education on neonatal palliative care into programs for nursing staff development.
Khraisat OM; Al-Bashaireh AM; Khafajeh R; Alqudah O
PLoS One
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/10.1371/journal.pone.0280081" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0280081</a>
"We Absolutely Had the Impression That It Was Our Decision"-A Qualitative Study with Parents of Critically Ill Infants Who Participated in End-of-Life Decision Making
Critical Illness; Decision Making; Infant; parental involvement; prematurity; shared decision making (MeSH); withdrawing treatment; withholding treatment (MeSH)
BACKGROUND: Guidelines recommend shared decision making (SDM) between neonatologists and parents when a decision has to be made about the continuation of life-sustaining treatment (LST). In a previous study, we found that neonatologists and parents at a German Level-III Neonatal Intensive Care Unit performed SDM to a variable but overall small extent. However, we do not know whether parents in Germany prefer an extent of more or sharing. METHODS: We performed a qualitative interview study with parents who participated in our first study. We analyzed the semi-structured interviews with qualitative content analysis according to Kuckartz. RESULTS: The participation in medical decision making (MDM) varied across cases. Overall, neonatologists and parents conducted SDM in most cases only to a small extent. All parents appreciated their experience independent of how much they were involved in MDM. The parents who experienced a small extent of sharing were glad that they were protected by neonatologists from having to decide, shielding them from a conflict of interest. The parents who experienced a large extent of sharing especially valued that they were able to fulfil their parental duties even if that meant partaking in a decision to forgo LST. DISCUSSION: Other studies have also found a variety of possibilities for parents to partake in end-of-life decision making (EOL-DM). Our results suggest that parents do not have a uniform preference for one specific decision-making approach, but rather different parents appreciate their individual experience regardless of the model for DM. CONCLUSION: SDM is apparently not a one-size-fits-all approach. Instead, neonatologists and parents have to adapt the decision-making process to the parents' individual needs and preferences for autonomy and protection. Therefore, SDM should not be prescribed as a uniform standard in medico-ethical guidelines, but rather as a flexible guidance for DM for critically ill patients in neonatology.
Beyer M F; Kuehlmeyer K; Mang P; Flemmer AW; Führer M; Marckmann G; de Vos M; Schouten ES
Children
2022
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<a href="http://doi.org/10.3390/children10010046" target="_blank" rel="noreferrer noopener">10.3390/children10010046</a>
Ethics Roundtable: How Much is Too Much?
Infant; Newborn; Humans; Infant; Premature Ectodermal Dysplasia Pylorus/abnormalities; Gastric Outlet Obstruction; Carmi syndrome; end-of-life; epidermolysis bullosa; ethics; Life-limiting condition; Palliative Care
How should the medical team approach care for a very preterm infant with a significant painful and life-limiting condition when the parents wish to pursue all life-sustaining therapies? Here, we discuss a case of an infant born at 28 weeks' gestation with a diagnosis of Carmi syndrome (junctional epidermolysis bullosa and pyloric atresia). While the medical team felt that a do-not-resuscitate order and redirection to comfort care were appropriate, the family held on to hope for recovery and wished to continue with full intensive care measures.
Theodoro MF; Hays J; DiBartolomeo M; Carter B
American Journal of Hospice and Palliative Medicine
2023
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<a href="http://doi.org/10.1177/10499091221088829" target="_blank" rel="noreferrer noopener">10.1177/10499091221088829</a>
Care management trajectories of infants with life-limiting conditions who died before 12 months of age; a retrospective patient health record review
End-of-life-care; Infant; Life-limiting condition; Neonate; Palliative Care
PURPOSE: To characterise the care management trajectories of infants with life-limiting conditions, who died before 12 months, including clinical decision-making processes, identification of triggers that led to changes in care management from cure-orientated to palliative care and specialist palliative care team involvement. DESIGN AND METHODS: Retrospective patient health record review of infants with life-limiting conditions who died before 12 months of age and received care at three hospitals in Western Australia. Two data analysis methods; directed content analysis and process mapping. RESULTS: A total of 45 patient health records were reviewed. Process mapping led to typology of care management encompassing four trajectories; early de-escalation due to catastrophic event; treatment with curative intent throughout; treatment with curative intent until a significant point; and early treatment limits. Standardised advance care planning processes were used for just over 10% of infants. There was specialist palliative care team involvement for 25% of infants. CONCLUSION: Only a proportion of infants received early integration of palliative care principles and practices. Infants and their families may benefit from earlier integration of palliative care, and standardised processes for advance care planning that are done in parallel to treatment. PRACTICE IMPLICATIONS: There is opportunity to further enhance the delivery of palliative care to infants with life-limiting conditions and optimise the experience for families through education for health professionals, implementation of advance care planning and standardisation through policies and clinical practice guidelines.
Iten R; O'Connor M; Cuddeford L; Gill FJ
Journal of Pediatric Nursing
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/10.1016/j.pedn.2022.11.014" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2022.11.014</a>
Implementing a Palliative Care Education Program in the NICU and Why It Is so Important: A Literature Review
Infant; Neonatal Palliative Care; Family; Nursing Staff; Anxiety; educational program; end-of-life care; Infant; neonatal; Palliative Care; Newborn Humans Intensive Care Units
Aim: To review the literature relevant to palliative care educational programs for nursing staff and families in the NICU. Background: Few hospitals have a palliative care educational program that is in place despite the increasing need for one. Neonatal staff are not educated or prepared to provide end-of-life care (EOLC) and support to family members. There is a lack of literature that looks at parents' perception of EOLC and the potential benefit that proper education may have had on their experience. Methods: Sixteen articles were reviewed, including 7 cohort studies, 5 expert opinions, 1 experimental trail, 1 case-controlled study, 1 literature review, and 1 case study. Conclusion: Implementation of a palliative care education program can provide the necessary tools for neonatal staff to provide EOLC. This education can reduce the stress and anxiety that staff feel about EOLC. With proper education, the neonatal staff can then provide the necessary support for family members. Relevance to Clinical Practice: EOLC is part of all NICUs, and neonatal staff should receive proper education on how to handle such situations.
Arbuckle AD
Neonatal Network
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/10.1891/nn-2021-0010" target="_blank" rel="noreferrer noopener">10.1891/nn-2021-0010</a>
Family experience in a regional participant contact registry for research on intellectual disability
Participant recruitment is one of the most significant challenges in research on intellectual disability (ID). One potential solution is to develop a participant contact registry, which allows the researcher to contact participants directly rather than recruiting through multiple schools or service agencies. The authors describe the development of one such registry and results of a survey of registry families. Results suggest that families joined the registry to help others, they hope research in the ID field improves the daily lives of individuals with ID and their families, and they find research participation to be a positive experience. However, logistic concerns can be an important barrier to their research participation, and they would like more information about the research study both before and after participating.
Conners FA; Phillips BA; Rhodes JD; Hamilton JC
Intellectual and Developmental Disabilities
2014
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/10.1352/1934-9556-52.2.112" target="_blank" rel="noreferrer noopener">10.1352/1934-9556-52.2.112</a>
Should We Aspire to Be Rational About Letting Babies Die?
Death; Infant; Rational
Lantos JD
The American Journal of Bioethics
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/10.1080/15265161.2022.2123984" target="_blank" rel="noreferrer noopener">10.1080/15265161.2022.2123984</a>
Demographic and Clinical Differences Between Applied Definitions of Medical Complexity
Child; Chronic Disease; Cross-Sectional Studies; Demography; Hospitalization; Hospitals; Pediatric; Humans; Infant; Retrospective; Studies
OBJECTIVES: To identify the degree of concordance and characterize demographic and clinical differences between commonly used definitions of multisystem medical complexity in children hospitalized in children's hospitals. METHODS: We conducted a retrospective, cross-sectional cohort study of children <21 years of age hospitalized at 47 US Pediatric Health Information System-participating children's hospitals between January 2017 to December 2019. We classified patients as having multisystem complexity when using 3 definitions of medical complexity (pediatric complex chronic conditions, pediatric medical complexity algorithm, and pediatric chronic critical illness) and assessed their overlap. We compared demographic, clinical, outcome, cost characteristics, and longitudinal healthcare utilization for each grouping. RESULTS: Nearly one-fourth (23.5%) of children hospitalized at Pediatric Health Information System-participating institutions were identified as meeting at least 1 definition of multisystem complexity. Children with multisystem complexity ranged from 1.0% to 22.1% of hospitalized children, depending on the definition, with 31.2% to 95.9% requiring an ICU stay during their index admission. Differences were seen in demographic, clinical, and resource utilization patterns across the definitions. Definitions of multisystem complexity demonstrated poor agreement (Fleiss' κ 0.21), with 3.5% of identified children meeting all 3. CONCLUSIONS: Three definitions of multisystem complexity identified varied populations of children with complex medical needs, with poor overall agreement. Careful consideration is required when applying definitions of medical complexity in health services research, and their lack of concordance should result in caution in the interpretation of research using differing definitions of medical complexity.
Heneghan JA; Goodman DM; Ramgopal S
Hospital Pediatrics
2022
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<a href="http://doi.org/10.1542/hpeds.2021-006432">10.1542/hpeds.2021-006432</a>
Longitudinal Perinatal Palliative Care for Severe Fetal Neurologic Diagnoses
Family psychology; Female; Fetal; Diseases; Humans; Infant; Newborn Palliative Care; Psychology; Parents; Perinatal Care; Pregnancy; Prenatal Diagnosis
Perinatal palliative care (PnPC) focuses on enhancing family and newborn quality-of-life in the setting of a life-limiting fetal condition while simultaneously ensuring medical care delivery that is soundly in line with the family's goals and values. The inclusion of PnPC in the multidisciplinary care of a family facing severe fetal neurologic diagnoses allows for skilled exploration of the values and experience that ultimately drive creation of goals of care. The parental experience of receiving a life-limiting fetal diagnosis pushes parents into an emotional journey, which typically follows a recognizable progression of stages. PnPC providers appreciate the significance of this experiential journey and the importance of parental movement toward readiness to simultaneously welcome and mourn their child. Through longitudinal supportive care, beginning early in the fetal diagnostic progress and continuing throughout pregnancy and into the newborn period, PnPC providers explore the uncharted parental experience alongside the family and support them in creating value-driven care plans for their child. They contribute greatly to the multidisciplinary fetal and neonatal care teams as the advocate for and promote insightful communication and assist in delivery and coordination of value-driven care.
Humphrey LM; Schlegel AB
Seminars in Pediatric Neurology
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/10.1016/j.spen.2022.100965">10.1016/j.spen.2022.100965</a>
When and how do Healthcare Professionals Introduce Specialist Palliative Care to the Families of Children with Life-Threatening Conditions in Taiwan? A Qualitative Study
Child; Death; Delivery of Health Care; Humans; Infant; Newborn Palliative Care; Qualitative Research; Taiwan
BACKGROUND: Specialist palliative care (SPC) is often needed to manage complex or refractory problems in children with life-threatening conditions during end-of-life. This study explores the perceptions of healthcare professionals (HPs) to determine the triggers leading to and experiences with introducing SPC among families of children with life-threatening conditions. METHODS: A secondary analysis of 13 semi-structured interviews with HPs conducted from September 2019-June 2020 was carried out in a pediatric ward and a neonatal and pediatric intensive care unit in Taiwan. A thematic analysis was conducted. Competence Theory was used to guide the research questions and the interpretive framework. FINDINGS: Seven nurses, four pediatricians, one psychologist, and one respiratory therapist were interviewed. The need for shared knowledge regarding wishes for care and end-of-life decision-making were found to be the indicators for introducing SPC, along with having a fear of causing harm to the family-professional relationship and the patient. HPs value harmony in the form of clarifying misconceptions, building trust, and holding the moral bottom line. The theme of 'seeking the competent self' encompasses the values and expectations related to improving skills and creating a sense of fulfillment as HPs achieve good quality care. DISCUSSION: Discussions about SPC facilitate better communication and decision-making. Careful attention should be paid to the needs related to clarifying misconceptions and protecting the child's right to life when SPC is suggested. APPLICATION TO PRACTICE: Communication, empathy, and conflict resolution training may be helpful with developing HP competencies related to introducing SPC.
Lin SC; Chang KL; Huang MC
Journal of Pediatric Nursing
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/10.1016/j.pedn.2021.12.004">10.1016/j.pedn.2021.12.004</a>
Factors that Contribute to Bereaved Parents' Perceptions of Neonatal Palliative Care: A Systematic Literature Review
infant; review; guideline; neonatal; newborn; parent; experience; family; quality; satisfaction; palliative; Reviews; human; article; female; male; perception; psychological; therapy; practice; care; Reporting; intensive; unit; and; for; Items; Meta-Analyses; Preferred; systematic; Systematic; analysis; meta; units
OBJECTIVES: Neonatal palliative care (NPC) is an emerging subset of care in United States (US) neonatal intensive care units (NICUs) that provides relief for both infants and families at the end of life for infants with terminal diagnoses. Families play a integral role in the decision-making process for their infant, but their experiences with and perceptions of the support and care provided to them via NPC is unclear to health professionals. This literature review summarizes the state of knowledge on parents' perspectives of NPC while focusing on the specific factors that influence their experiences and satisfaction with NPC. METHOD(S): A systematic literature review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Articles published in peer-reviewed journals between January 2010 and January 2021 that investigated parents' perceptions of neonatal palliative care either as their central topic or as a sub-topic as part of a larger focus. RESULT(S): A total of 16 articles (N = 16) were included in this review. Three overarching themes encompass the findings of the literature review: parent-clinician interactions, parent-infant interactions, and parent-self interactions. Within these themes, topics such as consistent and clear communication, involvement in care decisions, and social and psychological support were explored. CONCLUSION(S): Clinicians must focus on these important quality indicators to ensure they provide the best care possible to the patients and families that they serve. Further research must be done to investigate parent satisfaction and needs in relation to NPC more deeply and to develop more supportive interventions and protocols.
Hamel M N; Beltran SJ
American Journal of Hospice 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/10.1177/10499091221113277">10.1177/10499091221113277</a>
Postdischarge Health Resource Use in Pediatric Survivors of Prolonged Mechanical Ventilation for Acute Respiratory Illness
Child; Infant; Pediatrics; Respiration; Aftercare; Pneumonia; Critical illness; Discharge; Health resources; Healthcare; Intensive care unit; Respiratory distress syndrome
We aimed to identify characteristics associated with postdischarge health resource use in children without medical complexity who survived an episode of prolonged mechanical ventilation for respiratory illness. We hypothesized that longer durations of mechanical ventilation, noncomplex chronic conditions, and severe acute respiratory distress syndrome (ARDS) would be associated with readmission or an Emergency Department (ED) visit. In this retrospective cohort, we evaluated children without a complex chronic condition who survived a respiratory illness requiring ≥3 days of mechanical ventilation and who had insurance eligibility within the Colorado All Payers Claims Database. We used insurance claims to characterize health resource use and multivariable logistic regression to identify characteristics associated with readmission or an ED visit during the postdischarge year. We evaluated 82 children, median age 12.8 months (interquartile range [IQR]: 4.0-24.1), 20 (24%) with a noncomplex chronic condition and 62 (76%) without any chronic conditions. Bronchiolitis (60%) and pneumonia/aspiration pneumonitis (17%) were the most common etiologies of respiratory failure and 47 (57%) patients had severe ARDS. Forty-six (56%) patients had an ED visit or readmission. Among the 18 readmitted patients, 16/18 (89%) readmissions were for respiratory illness. Forty (49%) patients had ≥2 outpatient pulmonary visits and 45 (55%) filled a pulmonary medication prescription. In analyses controlling for age, illness severity and mechanical ventilation duration, severe ARDS was predictive of ED visit or readmission (odds ratio [OR]: 5.53 [95% confidence interval [CI]: 1.79, 19.09]). Children who survive prolonged mechanical ventilation for respiratory disease experience high rates of postdischarge health resource use, particularly those surviving severe ARDS.
Vo M; Miller K; Bennett TD; Mourani PM; LaVelle J; Carpenter TC; Scott Watson R; Pyle L L; Maddux AB
Pediatric Pulmonology
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/10.1002/ppul.25934" target="_blank" rel="noreferrer noopener">10.1002/ppul.25934</a>
Reimagining Perinatal Palliative Care: A Broader Role for Support in the Face of Uncertainty
female; grief; ethics; human; perinatal care; uncertainty; article; palliative therapy; comfort; fetus; patient referral; infant; bereavement support; decision making
Perinatal medicine is confronted by a growing number of complex fetal conditions that can be diagnosed prenatally. The evolution of potentially life-prolonging interventions for the baby before and after birth contributes to prognostic uncertainty. For clinicians who counsel families in these circumstances, determining which ones might benefit from early palliative care referral can be challenging. We assert that all women carrying a fetus diagnosed with a life-threatening condition for which comfort-focused care at birth is one ethically reasonable option ought to be offered palliative care support prenatally, regardless of the chosen plan of care. Early palliative care support can contribute to informed decision making, enhance psychological and grief support, and provide opportunities for care planning that includes ways to respect and honor the life of the fetus or baby, however long it may be.
Lord S; Williams R; Pollard L; Ives-Baine L; Wilson C; Goodman K; Rapoport A
Journal of 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/10.1177/08258597221098496" target="_blank" rel="noreferrer noopener">10.1177/08258597221098496</a>