Survival, short-term morbidity of extremely low gestational age infants and their predictors
Infant; sepsis; cohort analysis; controlled study; female; human; male; retrospective study; perception; palliative therapy; Pregnancy; stillbirth; gender; necrotizing enterocolitis; clinical article; gestational age; neonatal intensive care unit; prevalence; infant; conference abstract; birth weight; corticosteroid; length of stay; mortality risk; Gestational Age; brain hemorrhage; regression analysis; univariate analysis; survival prediction; encephalomalacia; morbidity; lung dysplasia; probability; retrolental fibroplasia
BACKGROUND: Despite advances in neonatal care for extremely low gestational age (ELGA) infants, they experience high rates of mortality and morbidity. Local data on survival, predictors, and outcomes of ELGA infants is crucial in order to provide accurate antenatal counseling. <br/>OBJECTIVE(S): To determine the survival and morbidities of ELGA infants in our region stratified by gestational age. DESIGN/METHODS: We performed a retrospective cohort study of infants born at <26 weeks gestational age who received intensive care at two level III Neonatal Intensive Care Units between January 1st 2014 and December 31st 2017. We excluded stillbirths and infants who received only palliative care from birth. Outcomes included survival to discharge home (or transfer to another center), length of admission, and the following short-term morbidities: intraventricular hemorrhage (IVH) grade III - IV, periventricular leukomalacia (PVL), bronchopulmonary dysplasia (BPD), necrotizing enterocolitis (NEC) Bell's Stage >=2, late-onset sepsis, and retinopathy of prematurity (ROP) requiring treatment. A multivariable regression analysis was performed to analyze three factors identified as significant (p<.05) on univariate analysis. <br/>RESULT(S): 117 infants were included: 8 infants at 22 weeks, 20 at 23 weeks, 38 at 24 weeks, and 51 at 25 weeks. The rates of survival were 37.5%, 50.0%, 68.4%, and 76.5% at 22, 23, 24, and 25 weeks, respectively. The probability of survival was similar for infants born at 22 and 23 weeks GA and significantly lower than for infants born at 24 and 25 weeks (fig.1). The mean (+/-SD) length of stay in the NICU was 114.6 +/- 33.7 days. The overall prevalence of short-term morbidities was 25.9% for IVH grade III - IV, 5.4% for PVL, 89.9% for BPD, 16.1% for NEC, 40.0% for late-onset sepsis, and 19.3% for ROP requiring treatment. Only 2.7% of infants who survived >=36 weeks (post-menstrual age) had no short-term morbidities. The multivariable regression analysis demonstrated: an increased risk of mortality for every 100g decrease in birth weight (OR=1.97; 95% CI: 1.40 - 1.98; p =.02), an increased risk of mortality for an incomplete course of antenatal corticosteroids (OR=1.58; 95% CI: 1.2 - 1.78; p =.008), and no effect of gender on mortality over time (OR=1.38; 95% CI: 0.8 - 1.68; p=.15). <br/>CONCLUSION(S): ELGA infants from our region faced similarly high rates of mortality and major short-term morbidity compared to other Canadian centers. Infants born at 22 and 23 weeks experienced similar survival trajectories, which should be further explored as it may influence clinical perceptions of viability at 22 weeks. (Figure Presented).
Kis H; Lemyre B; Radonjic A; Feberova J
Paediatrics and Child Health
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/10.1093/pch/pxz066.129" target="_blank" rel="noreferrer noopener">10.1093/pch/pxz066.129</a>
Improving Prenatal Palliative Care Consultation Using Diagnostic Trigger Criteria: Improving Prenatal Palliative Care Consultation through Quality Improvement
child; diagnosis; article; controlled study; female; human; palliative therapy; consultation; outcome assessment; congenital malformation; patient referral; eligibility; pregnancy; total quality management
Three percent of pregnancies are complicated by congenital anomalies. Prenatal integration of pediatric palliative care (PPC) may be hindered by non-standardized PPC referral processes. This quality improvement (QI) project aimed to improve prenatal PPC consultation using a diagnostic trigger list. Measures: Main outcome measure was the percentage of prenatal PPC consults completed based on diagnostic trigger list eligibility. Balancing measures included stakeholder perspectives on PPC consults and products. Intervention: Interventions included creation and implementation of a diagnostic trigger list for prenatal PPC consultation, educational initiatives with stakeholders, and iterative modifications of our prenatal consultation process. Outcomes: Interventions increased consultation rates ≥80% during the first six months of QI implementation (baseline vs. post-interventions) although this increase was not consistently sustained over a 12-month period. Conclusions/lessons learned: Diagnostic trigger lists improve initial rates of prenatal PPC consultation and additional interventions are likely needed to sustain this increase.
Lin M; Rholl E; Andescavage N; Ackerman O; Fisher D; Lanzel AF; Mahmood LA
Journal of Pain and Symptom Management
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.jpainsymman.2023.10.015" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.10.015</a>
Butterflies and Ribbons: Supporting Families Experiencing Perinatal Loss in Multiple Gestation
palliative care; communication; neonatology; prematurity; nursing; Pregnancy; parental perspectives; medical education; twins; perinatal loss; Butterflies; multiple pregnancy; triplets
Introduction: In neonatology, multiple pregnancies are common. Unfortunately, it is not rare for one baby to die. Communication with parents in these circumstances has been demonstrated to be sub-optimal. Methods: Two educational programs were evaluated with pre- and post-course surveys, questionnaires administered to participants, and audits. Results: In the online Butterfly project (UK; n = 734 participants), all participants reported that the training exceeded or met their expectations, 97% reported they learned new skills, and 48% had already applied them. Participants expressed gratitude in their open-ended answers: "I feel a lot more confident in supporting parents in this situation". In the Ribbon project (workshop for neonatal clinicians, Quebec; n = 242), 97% were satisfied with the training and reported feeling more comfortable caring for bereaved parents. Knowledge improved pre-post training. Audits revealed that 100% of cases were identified on the incubator and the baby's/babies' admission card, all changed rooms after the death of their co-twin/triplet, and all had the name of their co-twin/triplet on the discharge summary. All clinicians (55) knew what the ribbon symbol meant when asked during surprise audits at the bedside. Conclusion: Different educational strategies to optimize communication with families after the perinatal loss of a co-twin are appreciated and have a positive impact.
Boutillier B; Embleton ND; Belanger S; Bigras-Mercier A; Larone Juneau A; Barrington KJ; Janvier A
Children (Basel)
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/10.3390/children10081407" target="_blank" rel="noreferrer noopener">10.3390/children10081407</a>
Max's legacy: an evaluation of the impacts of baby loss on staff and families
Female; Descriptive Research; Human; Thematic Analysis; Bereavement; Family Attitudes; Semi-Structured Interview; Abortion, Spontaneous; After Care; Attitude of Health Personnel; Focus Groups; Multimethod Studies; Pregnancy Trimester, First; Pregnancy; Safety; United Kingdom
Background/Aims There is a paucity of literature on the impact of baby loss experiences on family and staff. This study aimed to explore existing support available to families and staff in a UK hospital for first trimester miscarriage, as well as experiences of baby loss, and make recommendations for future care. Methods A mixed-methods service evaluation was conducted. Data were gathered from healthcare professionals (surveys, phase 1; interviews, phase 2) and service users who had experienced baby loss (focus group discussions, phase 3). Qualitative data were analysed thematically, alongside descriptive quantitative results. Results Communication, support, recognition of loss and environment were key contributors to positive and negative experiences for staff and families. Peer support enhanced communication, reduced isolation and increased ability to function on a daily basis following loss. Conclusions Formal, resourced maternity bereavement aftercare services are essential to the support the experiences, outcomes and safety of staff and families experiencing baby loss and miscarriage.
Whitehouse C; Crane R; Rostron H; Cater K
British Journal of Midwifery
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/10.12968/bjom.2023.31.7.368%5C">10.12968/bjom.2023.31.7.368\</a>"
Fatal fetal anomaly: Experiences of women and their partners
Humans; Female; Male; Palliative Care; Quality of Health Care; Qualitative Research; Adaptation, Psychological; Pregnancy; Parents; Grief
OBJECTIVE: This study explored the care experiences of parents whose pregnancy was diagnosed with a fatal fetal anomaly following the legalisation of termination of pregnancy in 2019 in Ireland., METHODS: A qualitative study using in-depth semi-structured interviews and interpretative phenomenological analysis was undertaken. Purpose ful sampling was used to recruit 10 parents, six women and four of their male partners. Parents recruited included those who terminated and continued the pregnancy., RESULTS: Three superordinate themes were identified: 'Attachment and coping', 'There's no place for you in the pregnancy world' and 'Consistency of quality care'. Parents shared the different approaches and level of attachment to their baby that supported their coping. Regardless of the level of attachment, many parents benefited from the acts of remembrance. Parents expressed how they no longer felt they belonged in the 'pregnancy world' and described a need for healthcare professionals to recognise their loss and create a safe and supportive environment in which they could share their grief. Despite this, parents' accounts highlighted variations and inconsistencies in care and service provision., CONCLUSION: Our study highlighted parents' need for consistent, well communicated, and comprehensive care, which encourages an individualised perinatal palliative care approach to meet parental needs.
Jackson P; Power-Walsh S; Dennehy R; O'Donoghue K
Prenatal Diagnosis
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/10.1002/pd.6311" target="_blank" rel="noreferrer noopener">10.1002/pd.6311</a>
Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope
Palliative Care; diagnosis; human; patient care; palliative therapy; neurology; grief; Referral and Consultation; review; consultation; fetus; shared decision making; infant; decision making; medical care; uncertainty; prenatal period; vignette; social belief; brain; counseling; encephalocele; pregnancy; prognosis
Fetal neurology is a rapidly evolving and expanding field. Discussions about diagnosis, prognosis, treatment options, and goals of care often begin in the antenatal period. However, there are inherent challenges to fetal counseling of neurological diagnoses due to limitations of fetal imaging, prognostic uncertainty, and variability in neurodevelopmental outcomes. In the midst of uncertainty, families are challenged with preparing a care plan for their baby while simultaneously experiencing profound grief. The paradigms of perinatal palliative care can assist with the grieving process and help frame diagnostic testing and complex decision-making within the context of a family's spiritual, cultural, and social belief system. This ultimately leads to a shared decision-making process and value driven medical care. While perinatal palliative care programs have expanded, many families faced with such diagnoses never meet with a palliative care team prior to delivery. Moreover, there is significant variability in the availability of palliative care services throughout the country. Using an illustrative vignette of a patient with a prenatally diagnosed encephalocele, this review aims to provide a basic framework of perinatal palliative care for fetal neurology diagnoses that emphasizes 1) importance of clear, consistent, and transparent communication among all subspecialists and families, 2) creation of a palliative care birth plan, 3) importance of consistent care providers and longitudinal points of contact prenatally and post-delivery, 4) close communication between the prenatal and post-natal providers to allow for optimal continuity of care, and 5) recognize that information, care plans, and goals of care often evolve over time.
Cortezzo DE; Vawter-Lee M; Shoaib A; Venkatesan C
Frontiers in 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/10.3389/fped.2023.1205543" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1205543</a>
Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns
Critical Illness; Decision Making; Child; Communication; Critical Illness; Critical Illness/th [Therapy]; Death; Decision Making; Delivery of Health Care; Female; Humans; Infant Newborn; Parents; Pregnancy; Probability; Qualitative Research; Uncertainty
BACKGROUND: A significant number of critically ill neonates face potentially adverse prognoses and outcomes, with some of them fulfilling the criteria for perinatal palliative care. When counselling parents about the critical health condition of their child, neonatal healthcare professionals require extensive skills and competencies in palliative care and communication. Thus, this study aimed to investigate the communication patterns and contents between neonatal healthcare professionals and parents of neonates with life-limiting or life-threatening conditions regarding options such as life-sustaining treatment and palliative care in the decision-making process., METHODS: A qualitative approach to analysing audio-recorded conversations between neonatal team and parents. Eight critically ill neonates and a total of 16 conversations from two Swiss level III neonatal intensive care units were included., RESULTS: Three main themes were identified: the weight of uncertainty in diagnosis and prognosis, the decision-making process, and palliative care. Uncertainty was observed to impede the discussion about all options of care, including palliative care. Regarding decision-making, neonatologists oftentimes conveyed to parents that this was a shared endeavour. However, parental preferences were not ascertained in the conversations analysed. In most cases, healthcare professionals were leading the discussion and parents expressed their opinion reactively to the information or options received. Only few couples proactively participated in decision-making. The continuation of therapy was often the preferred course of action of the healthcare team and the option of palliative care was not mentioned. However, once the option for palliative care was raised, the parents' wishes and needs regarding the end-of-life care of their child were obtained, respected, and implemented by the team., CONCLUSION: Although shared decision-making was a familiar concept in Swiss neonatal intensive care units, parental involvement in the decision-making process illustrated a somewhat different and complex picture. Strict adherence to the concept of certainty might impede the process of decision-making, thereby not discussing palliation and missing opportunities to include parental values and preferences. Copyright © 2023. The Author(s).
Limacher R; Fauchere JC; Gubler D; Hendriks MJ
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/s12904-023-01170-z" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01170-z</a>
Living With Loss: Study Protocol for a Randomized Controlled Trial Evaluating an Internet-Based Perinatal Bereavement Program for Parents Following Stillbirth and Neonatal Death
Male; Female; Bereavement; Parents; Quality of Life; Grief; Infant Newborn; Australia; Pregnancy; Internet; Clinical Trials; Perinatal Death; Scales; Psychosocial Factors; Prevention and Control
Background: Stillbirth and neonatal death are devastating pregnancy outcomes with long-lasting psychosocial consequences for parents and families, and wide-ranging economic impacts on health systems and society. It is essential that parents and families have access to appropriate support, yet services are often limited. Internet-based programs may provide another option of psychosocial support for parents following the death of a baby. We aim to evaluate the efficacy and acceptability of a self-guided internet-based perinatal bereavement support program "Living with Loss" (LWL) in reducing psychological distress and improving the wellbeing of parents following stillbirth or neonatal death.Methods: This trial is a two-arm parallel group randomized controlled trial comparing the intervention arm (LWL) with a care as usual control arm (CAU). We anticipate recruiting 150 women and men across Australia who have experienced a stillbirth or neonatal death in the past 2 years. Participants randomized to the LWL group will receive the six-module internet-based program over 8 weeks including automated email notifications and reminders. Baseline, post-intervention, and 3-month follow-up assessments will be conducted to assess primary and secondary outcomes for both arms. The primary outcome will be the change in Kessler Psychological Distress Scale (K10) scores from baseline to 3-month follow-up. Secondary outcomes include perinatal grief, anxiety, depression, quality of life, program satisfaction and acceptability, and cost-effectiveness. Analysis will use intention-to-treat linear mixed models to examine psychological distress symptom scores at 3-month follow-up. Subgroup analyses by severity of symptoms at baseline will be undertaken.Discussion: The LWL program aims to provide an evidence-based accessible and flexible support option for bereaved parents following stillbirth or neonatal death. This may be particularly useful for parents and healthcare professionals residing in rural regions where services and supports are limited. This RCT seeks to provide evidence of the efficacy, acceptability, and cost-effectiveness of the LWL program and contribute to our understanding of the role digital services may play in addressing the gap in the availability of specific bereavement support resources for parents following the death of a baby, particularly for men.Trial Registration: Australian New Zealand Clinical Trials Registry, ACTRN12621000631808 . Registered prospectively on 27 May 2021.
Loughnan SA; Boyle FM; Ellwood D; Crocker S; Lancaster A; Astell C; Dean J; Horey D; Callander E; Jackson C; Shand A; Flenady V
Trials
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/s13063-022-06363-0" target="_blank" rel="noreferrer noopener">10.1186/s13063-022-06363-0</a>
Overview of Perinatal Palliative Care in Brazil
quality of life; palliative care; Brazil; mothers; epidemiology; pregnancy; Chordata; eukaryotes; health care; Hominidae; Homo; human diseases; Latin America; mammals; man; primates; South America; vertebrates; birth; America; animals; neonates; epidemics; gestation; women; guidelines; recommendations; birth defects; Community of Portuguese Language Countries; congenital abnormalities; congenital malformations; drug abusers; drug users; high Human Development Index countries; malformations; microcephaly; upper-middle income countries
Significant attention to palliative care in terminally ill patients has only been effective in Brazil since the year 2000, although there have been isolated actions since the 1980s. When the case involves fetuses or neonates unable to cure, communication and care with the family members only received attention and effective organization starting in 2017. Notably in the years 2015 and 2016 there was an epidemic of microcephaly and along with the persistent crisis of drug users has raised the indices of malformations to a level higher than 3% of the world average. Here we aim the evaluation of: (a) social, educational and spiritual profile of the mothers; (b) structure of the specific teams related to palliative care in neonatology; (c) recommendations and protocols currently used in the country. The method used is an electronic retrospective on databases and government data; evaluation of the location and composition of palliative care teams in the country. The data found clearly point out that for Brazilian women, the characteristics of regionality in the country, educational level, religiousness and quality of life directly influence pregnancy and the acceptance or not of the possibility of death, directly influencing perinatal palliative care, which, by the way, is still developing methodologies for this type of action.
Saffi Junior MC; de Moraes AMSM; Favero GM
Brazilian Archives of Biology and Technology
2022
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<a href="http://doi.org/10.1590/1678-4324-2022210615" target="_blank" rel="noreferrer noopener">10.1590/1678-4324-2022210615</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>
Parents' Decision-Making for their Foetus or Neonate with a Severe Congenital Heart Defect
Adult; Child; Congenital; Decision-making; Female; Fetus; Heart Defects; Humans; Infant; Male; Newborn; Parents; Pregnancy; Psychology; Qualitative Research
BACKGROUND: Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or neonate face a complex and stressful decision between termination, palliative care, or surgery. Understanding how parents make this initial treatment decision is critical for developing interventions to improve counselling for these families. METHODS: We conducted focus groups in four academic medical centres across the United States of America with a purposive sample of parents who chose termination, palliative care, or surgery for their foetus or neonate diagnosed with severe CHD. RESULTS: Ten focus groups were conducted with 56 parents (M(age) = 34 years; 80% female; 89% White). Results were constructed around three domains: decision-making approaches; values and beliefs; and decision-making challenges. Parents discussed varying approaches to making the decision, ranging from relying on their "gut feeling" to desiring statistics and probabilities. Religious and spiritual beliefs often guided the decision to not terminate the pregnancy. Quality of life was an important consideration, including how each option would impact the child (e.g., pain or discomfort, cognitive and physical abilities) and their family (e.g., care for other children, marriage, and career). Parents reported inconsistent communication of options by clinicians and challenges related to time constraints for making a decision and difficulty in processing information when distressed. CONCLUSION: This study offers important insights that can be used to design interventions to improve decision support and family-centred care in clinical practice.
Delaney RK; Pinto NM; Ozanne EM; Brown H; Stark LA; Watt MH; Karasawa M; Patel A; Donofrio MT; Steltzer MM; Miller SG; Zickmund SL; Fagerlin A
Cardiology in the Young
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/10.1017/s1047951121003218" target="_blank" rel="noreferrer noopener">10.1017/s1047951121003218</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>
Relational Sequelae of Fetal Death During the First Pregnancy: A Qualitative Study on the Subjective Perceptions of the Relationship Between Mothers and Their Adult Subsequent Firstborn Children
Adult; Female; Fetal; Death; Humans; Mother-Child Relations; Mothers; Pregnancy; Qualitative Research; adult; subsequent; firstborn; children; attachment; fetal; death
Perinatal loss may deeply affect the attachment relationships of mothers and their next-born children. The aim was to explore the subjective perceptions of mothers, who had fetal death during the first pregnancy, and their adult subsequent firstborn children regarding the impact of the perinatal loss on the mother-child relationship and children's self-perception. Fifteen mothers who experienced a fetal death during the first pregnancy and their adult subsequent firstborn children were interviewed. A Grounded Theory approach was used. Five main themes were identified: fetal death as a real loss producing prolonged grief; the importance of the communication about the dead sibling; creating and maintaining a relationship with the lost sibling; the mother-subsequent child relationship: between detachment and overprotection; significant effects of fetal death on adult subsequent children's self-perception. Results highlighted a deep impact of fetal death on the subsequent mother-child relationship, as perceived by both mothers and adult children.
Saccardo C; Calvo V
Omega
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/10.1177/0030222820950891">10.1177/0030222820950891</a>
Addressing bias and disparities in periviable counseling and care
Humans; Infant, Newborn; Pregnancy; Female; Child; Perinatal Care; Bias; Counseling
Addressing bias and disparities in counseling and care requires that we contend with dehumanizing attitudes, stereotypes, and beliefs that our society and profession holds towards people of color, broadly, and Black birthing people in particular. It also necessitates an accounting of the historically informed, racist ideologies that shape present-day implicit biases. These biases operate in a distinctly complex and damaging manner in the context of end-of-life care, which centers around questions related to human pain, suffering, and value. Therefore, this paper aims to trace biases and disparities that operate in periviable care, where end-of-life decisions are made at the very beginning of life. We start from a historical context to situate racist ideologies into present day stereotypes and tropes that dehumanize and disadvantage Black birthing people and Black neonates in perinatal care. Here, we review the literature, address historical incidents and consider their impact on our ability to deliver patient-centered periviable care.
Tucker Edmonds B; Schmidt A; Walker VP
Seminars in Perinatology
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.semperi.2021.151524" target="_blank" rel="noreferrer noopener">10.1016/j.semperi.2021.151524</a>
Perinatal Palliative Care in the Neonatal Intensive Care Unit
Hospice and Palliative Care Nursing; Infant Newborn Diseases; Child; Female; Humans; Infant; Infant Newborn; Intensive Care Units Neonatal; Memory making; Neonatal palliative care; Palliative Care; Perinatal Care; Perinatal palliative care; Pregnancy; Resilience
With the frequency of infant deaths in the United States, many attributed to congenital malformations and prematurity, the neonatal intensive care unit (NICU) nurse must be adept at planning and providing perinatal palliative care. The NICU nurse requires education and training to proficiently contribute to the care planning and delivery of care and facilitate memory-making activities. The provision of perinatal palliative care may precipitate moral distress and needs to be addressed with education and resilience-fostering activities. To further perinatal palliative care effectiveness, research needs to be conducted.
Maher-Griffiths C
Critical Care Nursing Clinics of North America
2022
<a href="http://doi.org/10.1016/j.cnc.2021.11.008" target="_blank" rel="noreferrer noopener">10.1016/j.cnc.2021.11.008</a>
Perinatal palliative care
Bereavement; Child; Infant; Life-limiting condition; Life-threatening condition; Neonatal death; Newborn; Palliative Care; Perinatal Care; Perinatal palliative care; Pregnancy; Quality of Life
Perinatal Palliative Care is a model of care designed to prevent and treat the physical, spiritual, emotional, and social needs of fetuses and newborn infants with life-threatening or life-limiting conditions. The care extends to the infant's family. It is delivered by an interdisciplinary team to improve the quality of life from the time of diagnosis (possibly in utero) into death and bereavement (days, months or years later). To guarantee the access of this vulnerable population to high quality palliative care, structured programs and protocols need to be further developed in tertiary hospitals that treat highly complex obstetric and neonatal pathologies. Basic training is required for all the professionals involved.
Martín-Ancel A; Pérez-Muñuzuri A; González-Pacheco N; Boix H; Espinosa Fernández MG; Sánchez-Redondo MD; Cernada M; Couce ML
Anales de Pediatría (English Edition)
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.anpede.2021.10.003" target="_blank" rel="noreferrer noopener">10.1016/j.anpede.2021.10.003</a>
Creating a safe space': how perinatal palliative care coordinators navigate care and support for families
Care coordinator; Case Management; Curriculum; Delivery of Health Care; Family; Fetal diagnosis; Grief; Newborn Infant; Palliative Care; Perinatal Care; Perinatal palliative care; Pregnancy; Qualitative Research
BACKGROUND: Families who learn that their unborn baby has a life-limiting fetal condition are often overwhelmed by this news, alongside navigating an unfamiliar healthcare system. A skilled perinatal palliative care coordinator (PPCC) can help these families, yet little is known about their function and roles. AIMS: This study sought to describe the PPCC's approach to care, their guiding principles and the roles, knowledge and skills that enable them to provide exemplary care. METHODS: This qualitative descriptive study included interviews of 12 expert PPCCs. Directed content analysis was used to identify major codes. Iterative analysis led to theme identification. FINDINGS: Findings include the PPCC's position within the healthcare system, guiding principles, goals, roles and responsibilities, and knowledge and skills. Two figures enhance the understanding of the PPCCs approach to creating a safe space for the family, supporting the interdisciplinary team and facilitating coordinated birth planning. CONCLUSIONS: Every perinatal palliative care programme should include a PPCC. Future research on clinical training could examine the effectiveness of an educational intervention, using the detailed knowledge and skills learned in this study as a curriculum.
Côté-Arsenault D; Denney-Koelsch E; Elliott G
International Journal of Palliative Nursing
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/10.12968/ijpn.2021.27.8.386" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2021.27.8.386</a>
Values clarification: Eliciting the values that inform and influence parents' treatment decisions for periviable birth
Attitude to Health; Decision Making; Fetal Viability; Financial Stress; Parents; periviable delivery; Pilot Projects; Pregnancy; Premature Birth; Qualitative Research; Quality of Life; Religion; Resuscitation Orders; Second Trimester Pregnancy; shared decision making; Social Support; values clarification
BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). OBJECTIVE: We piloted values clarification exercises to inform resuscitation decision making and qualitatively assess perceptions of QOL. METHODS: We conducted a mixed-method study of women with threatened periviable delivery (22 0/7-24 6/7 weeks) and their important others (IOs). Participants engaged in three values clarification activities as part of a semi-structured interview-(a) Card sorting nine conditions as an acceptable/unacceptable QOL for a child; (b) Rating/ranking seven common concerns in periviable decision making (scale 0-10, not at all to extremely important); and (c) "Agreed/disagreed" with six statements regarding end-of-life treatment, disability, and QOL. Participants were also asked to define "QOL" and describe their perceptions of a good and poor QOL for their child. Analysis was conducted using SAS version 9.4 and NVivo 12. RESULTS: All mild disabilities were an acceptable QOL, while two-thirds of participants considered long-term mechanical ventilation unacceptable. Although pregnant women rated "Impact on Your Physical/Mental Health" (average 5.6) and IOs rated "Financial Concerns" the highest (average 6.6), both groups ranked "Financial Concerns" as the most important concern (median 5.0 and 6.0, respectively). Most participants agreed that "Any amount of life is better than no life at all" (pregnant women 62.1%; IOs 75.0%) and disagreed that resuscitation would cause "Too much suffering" for their child (pregnant women 71.4%; IOs 80.0%). Half were familiar with the phrase "QOL". Although the majority described a good QOL in terms of emotional well-being (eg "loved", "happy", "supported"), a poor QOL was described in terms of functionality (eg "dependent" and "confined"). Additionally, financial stability emerged as a distinctive theme when IOs discussed poor QOL. CONCLUSION: The study offers important insights on parental perspectives in periviable decision making and potential values clarification tools for decision support.
Tucker EB; Hoffman SM; Laitano T; Bhamidipalli SS; Jeffries E; Fadel W; Kavanaugh K
Paediatric and Perinatal Epidemiology
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/ppe.12590" target="_blank" rel="noreferrer noopener">10.1111/ppe.12590</a>
Perinatal palliative care: a dedicated care pathway
Child; Hospice and Palliative Care Nursing; Hospice Care; Infant; life-limiting diseases; life-threatening diseases; neonatal mortality; neonatal pain management; Newborn Infant; paediatric palliative care; Palliative Care; Parents; perinatal palliative care; Pregnancy; Terminal Care
OBJECTIVE: Ensure access to perinatal palliative care (PnPC) to all eligible fetuses/infants/parents. DESIGN: During 12 meetings in 2016, a multidisciplinary work-group (WG) performed literature review (Grading of Recommendations, Assessment, Development and Evaluation (GRADE) method was applied), including the ethical and legal references, in order to propose shared care pathway. SETTING: Maternal-Infant Department of Padua's University Hospital. PATIENTS: PnPC eligible population has been divided into three main groups: extremely preterm newborns (first group), newborns with prenatal/postnatal diagnosis of life-limiting and/or life-threatening disease and poor prognosis (second group) and newborns for whom a shift to PnPC is appropriate after the initial intensive care (third group). INTERVENTIONS: The multidisciplinary WG has shared care pathway for these three groups and defined roles and responsibilities. MAIN OUTCOME MEASURES: Prenatal and postnatal management, symptom's treatment, end-of-life care. RESULTS: The best care setting and the best practice for PnPC have been defined, as well as the indications for family support, corpse management and postmortem counselling, as well suggestion for conflicts' mediation. CONCLUSIONS: PnPC represents an emerging field within the paediatric palliative care and calls for the development of dedicated shared pathways, in order to ensure accessibility and quality of care to this specific population of newborns.
Rusalen F; Cavicchiolo ME; Lago P; Salvadori S; Benini F
BMJ Supportive & Palliative Care
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/10.1136/bmjspcare-2019-001849" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-001849</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>
Perinatal Counseling Following a Diagnosis of Trisomy 13 or 18: Incorporating the Facts, Parental Values, and Maintaining Choices
Counseling/ethics/methods; Shared Decision Making; Female; Humans; Infant Newborn; Palliative Care/ethics/methods/psychology; Parents/psychology; Pregnancy; Prenatal Diagnosis/methods/psychology; Psychosocial Support Systems; Trisomy 13 Syndrome/diagnosis/psychology/therapy; Trisomy 18 Syndrome/diagnosis/psychology/therapy
BACKGROUND: Families with a prenatal diagnosis of trisomy 13 or 18 are told many things, some true and some myths. They present with differing choices on how to proceed that may or may not be completely informed. PURPOSE: To provide the prenatal counselor with a review of the pertinent obstetrical and neonatal outcome data and ethical discussion to help them in supporting families with the correct information for counseling. METHODS/SEARCH STRATEGY: This article provides a review of the literature on facts and myths and provides reasonable outcome data to help families in decision making. FINDINGS/RESULTS: These disorders comprise a heterogeneous group regarding presentation, outcomes, and parental goals. The authors maintain that there needs to be balanced decision-making between parents and providers for the appropriate care for the woman and her infant. IMPLICATIONS FOR PRACTICE: Awareness of this literature can help ensure that prenatal and palliative care consultation incorporates the appropriate facts and parental values and in the end supports differing choices that can support the infant's interests.
Leuthner SR; Acharya K
Advances in Neonatal Care
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/10.1097/anc.0000000000000704" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000000704</a>
The grief ritual of extracting and donating human milk after perinatal loss
Infant; Female; Humans; Infant Mortality; Pregnancy; Perinatal loss; Mothers; Stillbirth; Ceremonial Behavior; Grief; Ambiguous loss; Continuing bonds; Grief rituals; Meaning-making in loss; Milk donation; Milk Banks; Milk Human
Perinatal loss is a major life crisis involving multiple losses, including the loss of future hopes and dreams, of being pregnant, and of self-esteem, to name a few. In the present study I focus on mothers who experienced perinatal loss and chose to extract and donate their human milk to nonprofit milk banks. Through an analysis of 88 women's personal testimonials, collected between 2017 and 2019, I uncover the ritualistic attributes of the extraction and donation process. The bereaved mothers in this study experienced ambiguous loss, comprising the combination of the physical absence and psychological presence of their baby. The process of extracting and donating their milk constitutes a grief ritual, allowing mothers to maintain and reconstruct the continuing bonds with their babies. The present study extends current understandings of organ donation in times of loss, highlighting the unique nature and consequences of the milk donation process through its conceptualization as a grief ritual.
Oreg A
Social Science & Medicine
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/10.1016/j.socscimed.2020.113312" target="_blank" rel="noreferrer noopener">10.1016/j.socscimed.2020.113312</a>
Basic neonatal resuscitation skills of midwives and nurses in Eastern Ethiopia are not well retained: An observational study
Infant; Humans; Adolescent; Female; Male; Middle Aged; Cross-Sectional Studies; Clinical Competence; Adult; Young Adult; Pregnancy; Education; Checklist; Newborn; Ethiopia; Asphyxia Neonatorum/*therapy; Midwifery/*education; Neonatal Nursing/*education; Resuscitation/*methods; Nursing/statistics & numerical data
BACKGROUND: Neonatal resuscitation is a life-saving intervention for birth asphyxia, a leading cause of neonatal mortality. Worldwide, four million neonate deaths happen annually, and birth asphyxia accounts for one million deaths. Improving providers' neonatal resuscitation skills is critical for delivering quality care and for morbidity and mortality reduction. However, retention of these skills has been challenging in developing countries, including Ethiopia. Hence, this study aimed to assess neonatal resuscitation skills retention and associated factors among midwives and nurses in Eastern Ethiopia. METHODS: An institution-based cross-sectional study was conducted using a pre-tested, structured, observational checklist. A total of 427 midwives and nurses were included from 28 public health facilities by cluster sampling and simple random sampling methods. Data were collected on facility type, availability of essential resuscitation equipment, socio-demographic characteristics of participants, current working unit, years of professional experience, whether a nurse or midwife received refresher training, and skills and knowledge related to neonatal resuscitation. Binary logistic regression was used to analyse the association between neonatal resuscitation skill retention and independent variables. RESULTS: About 11.2% of nurses and midwives were found to have retention of neonatal resuscitation skills. Being a midwife (AOR, 7.39 [95% CI: 2.25, 24.24]), ever performing neonatal resuscitation (AOR, 3.33 [95% CI: 1.09, 10.15]), bachelor sciences degree or above (AOR, 4.21 [95% CI: 1.60, 11.00]), and good knowledge of neonatal resuscitation (AOR, 3.31 [95% CI: 1.41, 7.73]) were significantly associated with skill retention of midwives and nurses. CONCLUSION: Basic neonatal resuscitation skills of midwives and nurses in Eastern Ethiopia are not well retained. This could increase the death of neonates due to asphyxia. Being a midwife, Bachelor Sciences degree or above educational status, ever performing neonatal resuscitation, and good knowledge were associated with skill retention. Providers should be encouraged to upgrade their educational level to build their skill retention and expose themselves to NR. Further, understanding factors affecting how midwives and nurses gain and retain skills using high-level methodology are essential.
Sintayehu Y; Desalew A; Geda B; Tiruye G; Mezmur H; Shiferaw K; Mulatu T
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.0236194" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0236194</a>
Decisions Parents Make When Faced With Potentially Life-Limiting Fetal Diagnoses and the Importance of Perinatal Palliative Care
decision-making; decisions; pregnancy; life-limiting fetal diagnoses; perinatal palliative care (PPC)
When parents face a potentially life-limiting fetal diagnosis in pregnancy, they then have a series of decisions to make. These include confirmatory testing, termination, and additional choices if they choose to continue the pregnancy. A perinatal palliative team provides a safe, compassionate, and caring space for parents to process their emotions and discuss their values. In a shared decision-making model, the team explores how a family's faith, experiences, values, and perspectives shape the goals for care. For some families, terminating a pregnancy for any reason conflicts with their faith or values and pursuing life prolonging treatments in order to give their baby the best chances for survival is the most important. For others, having a postnatal confirmatory diagnosis of a life limiting or serious medical condition gives them the assurance they need to allow their child a natural death. Others want care to be comfort-focused in order to maximize the time they have to be together as a family. Through this journey, a perinatal palliative team can provide the support and encouragement for families to express their goals and wishes, as well as find meaning and hope.
Marc-Aurele KL
Frontiers in Pediatrics
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/10.3389/fped.2020.574556" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.574556</a>
Effectiveness of psychotherapeutic interventions on psychological distress in women who have experienced perinatal loss: a systematic review protocol
animals; Chordata; eukaryotes; gestation; Hominidae; Homo; human diseases; mammals; man; mental disorders; mental health; mental illness; meta-analysis; perinatal mortality; pregnancy; pregnancy complications; pregnant women; primates; psychotherapy; randomized controlled trials; systematic reviews; vertebrates; women
Background: Perinatal loss is a traumatic and complex experience that contributes to negative maternal psychological states and adverse outcomes impacting fetal development, maternal-fetal/infant bonding, marital/partner relationships, and child cognitive, emotional, and behavioral development. These outcomes present preventable disease burden and financial liability to individuals, families, and the healthcare system. Psychological interventions have the potential to improve outcomes for women and their families after perinatal loss. A few studies have explored the effectiveness of individual psychotherapeutic interventions in reducing maternal psychological distress after perinatal loss; however, a systematic review to compare these interventions has not been conducted. The primary objective of this systematic review is to determine the effectiveness of psychotherapeutic intervention on psychological distress and perception, coping, and adjustment in women who have experienced perinatal loss. The secondary objective of this review is to examine the content and delivery methods of effective psychotherapeutic interventions. Methods: We endeavor to search electronic databases (PsycINFO, MEDLINE, Embase, Cochrane Central Register of Controlled Trials (CENTRAL), Scopus, CINAHL, Social Work Abstracts, Family and Society Studies Worldwide, Family Studies Abstracts, Academic Search Premier), gray literature databases (Proquest Dissertation and Theses Global, Web of Science Conference Proceedings Citation Index, OAIster, Open-Grey, Canadian Electronic Library, Canadian Research Index), and relevant organizational websites and conduct forward and backward citation searches of included studies. Inclusion criteria will consider studies that (1) are randomized controlled trials (RCTs), quasi-experimental (e.g., before-after design), and observational (prospective cohort); (2) include women affected by perinatal loss accessing psychotherapeutic intervention or support; and (3) evaluate a mental health or related outcome. Two authors will independently screen all citations, full-text articles, and abstract data. The study methodological quality (or bias) will be appraised using an appropriate tool. The primary outcome(s) will be measurements on the severity of depressive, anxiety, grief, and post-traumatic stress symptoms. Secondary outcomes will include measurements on difficulties in perception, coping, social, or dyadic adjustment. Conducting a narrative synthesis will identify relationships within study findings, and if appropriate, a random effects meta-analysis will be performed. Discussion: This systematic review will summarize the effectiveness of psychological interventions, including their content and delivery method, in reducing psychological distress and improving outcomes for women affected by perinatal loss. The evidence generated from this review can inform researchers and policymakers in expanding on related research and developing customized interventions or programs.
Charrois E M; Bright K S; Wajid A; Mughal M K; Hayden K A; Kingston D
Systematic Reviews
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/s13643-020-01387-6" target="_blank" rel="noreferrer noopener">10.1186/s13643-020-01387-6</a>
Extending the Concept of Advance Care Planning to the Perinatal Period
palliative care; pregnancy; life-limiting disease; neonate; birth plan; prenatal counselling
Easier access to prenatal diagnostic procedures led to its widespread use as a screening measure. Hence, today it is more common for life-limiting illnesses to be diagnosed during fetal life. The concept of Advance Care Planning (ACP) provides a framework for caregivers, families and their multidisciplinary teams to anticipate and plan ahead for potential future medical decisions so that the affected children are reliably treated according to their parents' individual values and wishes. In the perinatal context, ACP also has the potential to tackle the needs of unborn or newborn children with life-limiting illnesses and their families better, avoid unnecessary and burdensome measures and focus upon goals that are valuable and meaningful to both child and family.
Garten L; von der Hude K; Strahleck T; Krones T
Klinische Padiatrie
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/10.1055/a-1179-0530" target="_blank" rel="noreferrer noopener">10.1055/a-1179-0530</a>
Healthcare professionals' experiences of perinatal loss: A systematic review
Abortion; Adult; Female; Health Personnel/*psychology; healthcare professionals; Humans; Infant; Maternal Health Services/*manpower; neonatal units; Newborn; Perinatal Death; Perinatal loss; Pregnancy; psychological experiences; Spontaneous/*psychology; Stillbirth; Stillbirth/*psychology
Healthcare professionals' psychological involvement in perinatal loss is a largely overlooked subject by healthcare systems, scientific research and prevention policies. A systematic scientific review has been carried out about emotional experiences, attributed meanings and needs conveyed by healthcare professionals in relation to perinatal loss. We identified 213 studies between 1985 and 2015, 20 of which were included in the present study for qualitative analysis. Our results point out the need for a targeted vocational training in perinatal loss, enabling healthcare professionals to achieve a proper management of their own internal states.
Gandino G; Bernaudo A; Di Fini G; Vanni I; Veglia F
Journal of Health Psychology
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/10.1177/1359105317705981" target="_blank" rel="noreferrer noopener">10.1177/1359105317705981</a>
Parental decision-making following a prenatal diagnosis that is lethal, life-limiting, or has long term implications for the future child and family: a meta-synthesis of qualitative literature
Abortion; Birth; Continuation; Disorder; Life-limiting; Pregnancy; Termination
BACKGROUND: Information on the factors influencing parents' decision-making process following a lethal, life-limiting or severely debilitating prenatal diagnosis remains deficient. A comprehensive systematic review and meta-synthesis was conducted to explore the influencing factors for parents considering termination or continuation of pregnancy following identification of lethal, life-limiting or severely debilitating fetal abnormalities. METHODS: Electronic searches of 13 databases were conducted. These searches were supplemented by hand-searching Google Scholar and bibliographies and citation tracing. Thomas and Harden's (2008) thematic synthesis method was used to synthesise data from identified studies. RESULTS: Twenty-four papers were identified and reviewed, but two papers were removed following quality assessment. Three main themes were identified through systematic synthesis. Theme 1, entitled 'all life is precious', described parents' perception of the importance of the fetus' life, a fatalistic view of their situation alongside moral implications as well as the implications decisions would have on their own life, in consideration of previous life experiences. Theme 2 ('hope for a positive outcome') contained two sub-themes which considered the parent's own imagined future and the influence of other people's experiences. Finally, Theme 3 ('a life worth living') presented three sub-themes which may influence their parental decision-making: These described parental consideration of the quality of life for their unborn child, the possibility of waiting to try for another pregnancy, and their own responsibilities and commitments. CONCLUSION: The first review to fully explore parental decision-making process following lethal, life-limiting, or severely debilitating prenatal diagnosis provided novel findings and insight into which factors influenced parents' decision-making process. This comprehensive and systematic review provides greater understanding of the factors influential on decision-making, such as hope, morality and potential implications on their own and other's quality of life, will enable professionals to facilitate supported decision-making, including greater knowledge of the variables likely to influence parental choices.
Blakeley C; Smith D M; Johnstone E D; Wittkowski A
BMC Medical Ethics
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/s12910-019-0393-7" target="_blank" rel="noreferrer noopener">10.1186/s12910-019-0393-7</a>
Decision-making at the limit of viability: The Austrian neonatal choice context
article; human; palliative therapy; controlled study; shared decision making; systematic review; nervous system malformation; newborn; statistics; Austria; Choice context; Communication strategies; Decision-making; ethicist; framing bias; head; high income country; Limit of viability; neonatologist; neonatology; Neonatology; nicu; pregnancy; prematurity; semi structured interview
Background: We aimed to explore the shared decision-making context at the limit of viability (weeks 22-25 of gestation) through analyzing neonatologist's communication strategies with parents and their possible impact on survival and neurodevelopmental impairment (NDI) outcomes. Method(s): A mixed methods approach was applied where a systematic literature search and in-depth semi-structured interviews with five heads of neonatology departments and one clinical ethicist from the Austrian context were integrated into a literature review. The aim was to identify decision practice models and the choice context specific to Austria. Result(s): Professional biases, parental understanding, and the process of information giving were identified as aspects possibly influencing survival and NDI outcomes. Institutions create self-fulfilling prophecies by recommending intensive/palliative care based upon their institutional statistics, yet those vary considerably among high-income countries. Labelling an extremely preterm (EP) infant by the gestational week was shown to skew the estimates for survival while the process of information giving was shown to be subject to framing effect and other cognitive biases. Conclusion(s): Communication strategies of choice options to parents may have an impact on the way parents decide and hence also on the outcomes of EP infants. Copyright � 2019 The Author(s).
Stanak M; Hawlik K
BMC Pediatrics
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/s12887-019-1569-5" target="_blank" rel="noreferrer noopener">10.1186/s12887-019-1569-5</a>
Implementation of Pediatric Palliative Care (PPC) in a Neonatal Intensive Care Unit (NICU) in St.Gallen
decision making; death; newborn; Switzerland; trisomy 18; major clinical study; newborn period; pregnancy; neonatal intensive care unit; conference abstract; human; child; female; male; palliative therapy; drug withdrawal; brain hemorrhage
Introduction: The Children's Hospital of Eastern Switzerland (OKS) is a hospital with 76 beds. A multiprofessional PPC and ethic team was established in 2007. After nine years of intensive development our PPC program reached full size (notification D) of sanaCERT Suisse certification. Until presently, the OKS is the only children's hospital in Switzerland which is certified in PPC. Furthermore, our PPC team is a member of the Pediatric Palliative Care Network Switzerland (PPCNCH). In order to focus on neonates, the biggest group needing PPC, we decided to develop a special program for Neonatal Palliative Care (NPC). Background(s): According to epidemiologic data, 400-500 children between the age of 0 and 18 years are dying in Switzerland each year. It's known from the PELICAN study (Bergstrasser; Zimmermann et al., 2016), that about 50% of these children are dying in the first year of life, of which 40% in the neonatal period. Four out of five children are dying in an ICU, the majority of them after a decision-making process with the decision to withhold or withdraw further treatment. Apparently, the neonates represent an important group and therefore it is reasonable to concentrate on NPC in the NICU. Case presentation: We present three neonatal patients suffering from severe, life threatening conditions: one newborn with trisomy 18, one premature of 32 week of gestation with a large intracerebral hemorrhage and a neonate with a life threatening conditions. The presentations demonstrate the difficulties and challenges and illustrate the importance of the involved teams networking in decision making and implementing care for these patients and their families under particular circumstances. The circumstances of death and the definitions of withholding or withdrawing therapy will be explained. Furthermore, the different requirements, discussions and the resources available in these cases will be presented. This indicates the possible improvements and developments in that area. Conclusion(s): Neonates are an important group to consider in a PPC program. Considering that the neonatal period is a very special phase of life for the child and his/her family deserve particular consideration and structures in order to treat them adequately. Caring for a neonate and his family needing PPC is a challenging task for the family and the multiprofessional team. Clear structures and allocated resources are very important to fulfill this need in a meaningful way.
Gudrun J; Susanne A
Swiss Medical Weekly
2017
Ethical dilemmas encountered by a palliative care team at a Pediatric cancer center in guatemala
adolescent; poverty; intensive care; blood transfusion; palliative therapy; major clinical study; retrospective study; cancer patient; patient autonomy; sound; treatment withdrawal; religion; pregnancy; case study; physician; cancer therapy; childhood cancer; conference abstract; justice; medical record review; human; child; female; adult; patient care; surgery; drug withdrawal; multidisciplinary team; cancer center; Guatemala; bioethics; brain death; cancer surgery; substance abuse; treatment refusal
Bustamante Tuchez LM; Rivas S; Paz G; Valverde P; Zaidi A; Close P
Pediatric Blood and Cancer
2018
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Depressive symptoms in mothers after perinatal and early infant loss in rural Bangladesh: a population-based study
Rural Population; Needs Assessment; Pregnancy; Infant Newborn; Young Adult; Infant Mortality; Humans; Adult; Stillbirth; Risk Assessment; Adolescent; Cohort Studies; Female; Infant; Retrospective Studies; Databases Factual; Incidence; Developing Countries; Mothers/ psychology; Postpartum Period; Perinatal Mortality/trends; Maternal Health; Bangladesh; Bangladesh/epidemiology; Depression/ epidemiology/etiology; Depressive symptoms; Mental health; Neonatal death; Stillbirth/ ethnology
Surkan PJ; Sakyi K; Strobino DM; Mehra S; Labrique A; Ali H; Ullah B; Wu L; Klemm R; Rashid M; West KP; Christian P
Annals of Epidemiology
2016
<a href="http://doi.org/10.1016/j.annepidem.2016.06.001" target="_blank" rel="noreferrer noopener">10.1016/j.annepidem.2016.06.001</a>
Death of One Twin during the Perinatal Period: An Interpretative Phenomenological Analysis
congenital abnormality; Bereavement; Bereavement; Female; Humans; Infant; Interviews as Topic; Male; Newborn; Parents; Parents/ psychology; Pregnancy; Qualitative Research; Twins; palliative care; qualitative; Perinatal Death; Qualitative research; female; male; perinatal death; bereavement; Twins; twins
BACKGROUND: Perinatal death is one of the most difficult bereavements due to the shock and profound grief experienced by parents. It has been established that such bereavement has a life-lasting impact. Twin pregnancy is associated with increased perinatal risk, with higher rates of perinatal mortality than in singleton pregnancy. OBJECTIVES: To date, few studies have examined the effect of the loss of one twin diagnosed with a congenital abnormality during pregnancy. This study aims at gaining insight into parents' views to explore the impact of death of one twin in the perinatal period. DESIGN: A qualitative study was undertaken by utilizing interpretative phenomenological analysis. Nine parents who have experienced perinatal loss, all of whom had a prenatal diagnosis of congenital abnormality, participated in in-depth semi-structured interviews. RESULTS: Parents recounted how distressed they were when initially informed that there was a complication. On diagnosis, parents began a complex palliative journey, proceeding in the pregnancy and grieving one baby while trying to ensure the welfare of the co-twin. As parents were encouraged to focus on the "normal" twin, they felt their opportunity to grieve was diminished. It was important that the surviving twin would be identified as a twin and know of their sibling. However, parents conveyed feelings of deep sadness, because this was also a reminder that one twin would always be missing. CONCLUSIONS: Parents were not prepared for the complications they experienced in pregnancy. Clear and appropriate information in relation to perinatal palliative care should be provided to parents in twin pregnancies discordant for fetal abnormality.
Meaney S; Corcoran P; O'Donoghue K
Journal of Palliative Medicine
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/10.1089/jpm.2016.0264" target="_blank" rel="noreferrer noopener">10.1089/jpm.2016.0264</a>
Birth weight percentile and the risk of term perinatal death
Female; Humans; infant; Male; retrospective studies; Young Adult; Pregnancy; Adult; cause of death; Risk Assessment; Birth Weight; Stillbirth; Perinatal Mortality; Scotland; Newborn; Smoking
OBJECTIVE: To estimate the association between birth weight percentile and the risk of perinatal death at term in relation to the cause of death. METHODS: We performed a retrospective cohort study of all term singleton births in delivery units in Scotland between 1992 and 2008 (n=784,576), excluding perinatal deaths ascribed to congenital anomaly. RESULTS: There were 1,700 perinatal deaths in the cohort, which were not the result of congenital anomaly (21.7/10,000 women at term). We observed a reversed J-shaped association between birth weight percentile and the risk of antepartum stillbirth in all women, but the associations significantly differed (P<.001) according to smoking status. The highest risk (adjusted odds ratio referent to 21st-80th percentile, 95% confidence interval) among nonsmokers was for birth weight third or less percentile (10.5, 8.2-13.3), but there were also positive associations for birth weight percentiles 4th-10th (3.8, 3.0-4.8), 11th-20th (1.9, 1.5-2.4), and 98th-100th (1.8, 1.3-2.4). Among smokers, the associations with being small were weaker and the associations with being large were stronger. We also observed a reversed J-shaped association between birth weight percentile and the risk of delivery-related perinatal death (ie, intrapartum stillbirth or neonatal death), but there was no interaction with smoking. The highest risk was for birth weight greater than the 97th percentile (2.3, 1.6-3.3), but there were also associations with third or less percentile (2.1, 1.4-3.1), 4th-10th (1.8, 1.4-2.4), and 11th-20th (1.5, 1.2-2.0). Analysis of the attributable fraction indicated that approximately one in three antepartum stillbirths and one in six delivery-related deaths at term could be related to birth weight percentile outside the range 21st-97th percentile. CONCLUSION: Effective detection of variation in fetal size at term has potential as a screening test for the risk of perinatal death. LEVEL OF EVIDENCE: II.
2014-08
Moraitis AA; Wood AM; Fleming M; Smith GCS
Obstetrics And Gynecology
2014
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Journal Article
<a href="http://doi.org/10.1097/AOG.0000000000000388" target="_blank" rel="noreferrer">10.1097/AOG.0000000000000388</a>
Palliative care for the family carrying a fetus with a life-limiting diagnosis
Female; Humans; Trisomy; Pregnancy; Attitude to Death; Prenatal Diagnosis; Prenatal Care; decision making; Family/psychology; social support; Palliative Care/methods; Chromosomes; Human; Pair 18/genetics; Fetal Diseases/diagnosis
Prenatal diagnosis of a lethal anomaly is a monumental moment in a family's life. It requires extensive team counseling and planning about complex neonatal and obstetric medical management. The construct of palliative care with its focus on emotional, spiritual, social, and symptom support can provide a model for caring for these families.
2007
Munson D; Leuthner SR
Pediatric Clinics Of North America
2007
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/10.1016/j.pcl.2007.06.006" target="_blank" rel="noreferrer">10.1016/j.pcl.2007.06.006</a>
Hospital care for parents after perinatal death
Female; Hospitalization; Humans; infant; Male; Fetal Death; Pregnancy; Adult; Parent-Child Relations; Infant Mortality; Autopsy; Choice Behavior; Funeral Rites; Adaptation; Psychological; patient care team; bereavement; Newborn; Parents/psychology; Photography; Pregnancy Trimester; Second; Stillbirth/psychology; Third
OBJECTIVE: To systematically review parent experiences with hospital care after perinatal death. DATA SOURCES: An evaluation of more than 1,100 articles from 1966 to 2006 was performed to identify studies of fetal death in the second or third trimester and neonatal death in the first month of life. METHODS OF STUDY SELECTION: Studies were limited to those that were in English, evaluated care in U.S. hospitals, and contained direct parent data or opinions. TABULATION, INTEGRATION, AND RESULTS: Results were compiled on five aspects of recommended care: 1) obtaining photographs and memorabilia of the deceased infant, 2) seeing and holding the infant, 3) labor and delivery of the child, 4) autopsies, and 5) options for funerals or memorial services. Sixty eligible studies with over 6,200 patients were reviewed. In general, parents reported appreciating time and contact with their deceased infant, being given options about labor, delivery, and burial, receiving photographs and memorabilia, and having appropriate hospital follow-up after autopsy. CONCLUSION: Although care after perinatal death often adheres to published guidelines, substantial room for improvement is apparent. Parents with perinatal losses report few choices during labor and delivery and inadequate communication about burial options and autopsy results. Hospitals, nurses, and doctors should increase parental choice about timing and location of delivery and postpartum care, encourage parental contact with the deceased infant, and facilitate provision of photos and memorabilia.
2007
Gold KJ; Dalton VK; Schwenk TL
Obstetrics And Gynecology
2007
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/10.1097/01.AOG.0000259317.55726.df" target="_blank" rel="noreferrer">10.1097/01.AOG.0000259317.55726.df</a>
Age limits and transition of health care in pediatric emergency medicine
Child; Female; Humans; Male; United States; Pregnancy; Pediatrics; Adult; Data Collection; Age Factors; Cystic Fibrosis; Hospitals; Emergency Medicine; Organizational Policy; Emergency Service; adolescent; Adolescent Transitions; Pregnancy in Adolescence; Pediatric/statistics & numerical data; Hospital/statistics & numerical data; General/statistics & numerical data
OBJECTIVE: To describe the practice reported by pediatric emergency department (PED) medical directors regarding age limits and transition of health care in their emergency departments and institutions. METHODS: A 28-question survey was sent by e-mail to 116 PED medical directors. Descriptive statistics were used to report results; chi tests were used for comparing categorical data. RESULTS: The survey was completed by 73 PED medical directors (63%). Age-limit policies were present in 58 (79%) of the PEDs, and 56 reported a specific age. The 18th and 21st birthdays were the most common specific ages cited. Thirty-six PEDs (64%) had an age limit of younger than 21 years. Pediatric emergency departments with age limits of 21 years or older versus younger than 21 years had a significantly higher rate of being associated with freestanding children's hospitals (P = 0.037). Appropriate exceptions to the age-limit policy included patients both over and under the age limit. The most common overage limit exception was cystic fibrosis, and the most common underage limit exception was teenage pregnancy. Thirteen PED medical directors (18%) were aware of a transition-of-care (pediatric to adult care provider) policy or work group at their institution, and 47 (64%) thought that such a work group would be valuable to addressing transition-of-care issues. CONCLUSION: In pediatric emergency medicine, the age of transition from pediatric to adult emergency care providers is variable both between and within institutions. Most PEDs have age limits of younger than 21 years. Most PED medical directors support a multidisciplinary work group or committee as a method of addressing transition of care. Known barriers to transition of care previously reported in the literature are reviewed.
2007
Dobson JV; Bryce L; Glaeser PW; Losek JD
Pediatric Emergency Care
2007
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Journal Article
<a href="http://doi.org/10.1097/01.pec.0000248701.87916.05" target="_blank" rel="noreferrer">10.1097/01.pec.0000248701.87916.05</a>
Endotoxin has acute and chronic effects on the cerebral circulation of fetal sheep.
Female; Fetal Death; Pregnancy; Animals; Statistical; Data Interpretation; Cerebrovascular Circulation/de [Drug Effects]; Endotoxins/pd [Pharmacology]; Fetus/bs [Blood Supply]; Lipopolysaccharides/pd [Pharmacology]; Blood Pressure/ph [Physiology]; Cerebrospinal Fluid/me [Metabolism]; Cytokines/bi [Biosynthesis]; Endothelial Cells/ph [Physiology]; Endotoxins/bl [Blood]; Lipopolysaccharides/bl [Blood]; Nitrates/bl [Blood]; Nitrites/bl [Blood]; Oxygen Consumption/ph [Physiology]; Sheep; Tumor Necrosis Factor-alpha/bl [Blood]; Vasodilation/de [Drug Effects]
We studied the impact of endotoxemia on cerebral blood flow (CBF), cerebral vascular resistance (CVR), and cerebral oxygen transport (O(2) transport) in fetal sheep. We hypothesized that endotoxemia impairs CBF regulation and O(2) transport, exposing the brain to hypoxic-ischemic injury. Responses to lipopolysaccharide (LPS; 1 microg/kg iv on 3 consecutive days, n = 9) or normal saline (n = 5) were studied. Of LPS-treated fetuses, five survived and four died; in surviving fetuses, transient cerebral vasoconstriction at 0.5 h (DeltaCVR approximately +50%) was followed by vasodilatation maximal at 5-6 h (DeltaCVR approximately -50%) when CBF had increased (approximately +60%) despite reduced ABP (approximately -20%). Decreased CVR and increased CBF persisted 24 h post-LPS and the two subsequent LPS infusions. Cerebral O(2) transport was sustained, although arterial O(2) saturation was reduced (P < 0.05). Histological evidence of neuronal injury was found in all surviving LPS-treated fetuses; one experienced grade IV intracranial hemorrhage. Bradykinin-induced cerebral vasodilatation (DeltaCVR approximately -20%, P < 0.05) was abolished after LPS. Fetuses that died post-LPS (n = 4) differed from survivors in three respects: CVR did not fall, CBF did not rise, and O(2) transport fell progressively. In conclusion, endotoxin disrupts the cerebral circulation in two phases: 1) acute vasoconstriction (1 h) and 2) prolonged vasodilatation despite impaired endothelial dilatation (24 h). In surviving fetuses, LPS causes brain injury despite cerebral O(2) transport being maintained by elevated cerebral perfusion; thus sustained O(2) transport does not prevent brain injury in endotoxemia. In contrast, cerebral hypoperfusion and reduced O(2) transport occur in fetuses destined to die, emphasizing the importance of sustaining O(2) transport for survival.
2009
Feng Susan YS; Phillips DJ; Stockx EM; Yu Victor YH; Walker AM
American Journal Of Physiology. Regulatory, Integrative And Comparative Physiology
2009
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/10.1152/ajpregu.00087.2008" target="_blank" rel="noreferrer">10.1152/ajpregu.00087.2008</a>
Management of acute asthma in adults in the emergency department: nonventilatory management
Female; Humans; Pregnancy; Adult; Risk Factors; Acute Disease; Oxygen Inhalation Therapy; Patient Admission; Emergency Service; decision making; Radiography; Thoracic; Hospital; Blood Gas Analysis; Oxygen/blood; Airway Obstruction/diagnosis; Forced Expiratory Volume; Recurrence/prevention & control; Adrenal Cortex Hormones/therapeutic use; Asthma/diagnosis/therapy; Bronchodilator Agents/therapeutic use; Magnesium Sulfate/therapeutic use; Oximetry; Peak Expiratory Flow Rate
2010
Hodder R; Lougheed MD; Rowe BH; FitzGerald JM; Kaplan AG; McIvor RA
Canadian Medical Association Journal
2010
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Journal Article
<a href="http://doi.org/10.1503/cmaj.080072" target="_blank" rel="noreferrer">10.1503/cmaj.080072</a>
Clinical and MRI correlates of cerebral palsy: the European Cerebral Palsy Study
Child; Cross-Sectional Studies; Female; Humans; infant; Male; Pregnancy; Pregnancy Complications; Risk Factors; Magnetic Resonance Imaging; Preschool; infant; Newborn; Premature; Brain/pathology; Cerebral Palsy/epidemiology/etiology/physiopathology; Delivery; Infectious; Multiple; Obstetric
CONTEXT: Magnetic resonance imaging (MRI) findings have been reported for specific clinical cerebral palsy (CP) subgroups or lesion types but not in a large population of children with all CP subtypes. Further information about the causes of CP could help identify preventive strategies. OBJECTIVE: To investigate the correlates of CP in a population sample and compare clinical findings with information available from MRI brain studies. DESIGN AND SETTING: Cross-sectional, population-based investigative study conducted in 8 European study centers (North West London and North East London, England; Edinburgh, Scotland; Lisbon, Portugal; Dublin, Ireland; Stockholm, Sweden; Tubingen, Germany; and Helsinki, Finland). PARTICIPANTS: Five hundred eighty-five children with CP were identified who had been born between 1996 and 1999; 431 children were clinically assessed and 351 had a brain MRI scan. MAIN OUTCOME MEASURES: Standardized clinical examination results, parental questionnaire responses, MRI results, and obstetric, genetic, and metabolic data from medical records. RESULTS: Important findings include the high rate of infections reported by mothers during pregnancy (n = 158 [39.5%]). In addition, 235 children (54%) were born at term while 47 children (10.9%) were very preterm (<28 weeks). A high rate of twins was found, with 51 children (12%) known to be from a multiple pregnancy. Clinically, 26.2% of children had hemiplegia, 34.4% had diplegia, 18.6% had quadriplegia, 14.4% had dyskinesia, 3.9% had ataxia, and 2.6% had other types of CP. Brain MRI scans showed that white-matter damage of immaturity, including periventricular leukomalacia (PVL), was the most common finding (42.5%), followed by basal ganglia lesions (12.8%), cortical/subcortical lesions (9.4%), malformations (9.1%), focal infarcts (7.4%), and miscellaneous lesions (7.1%). Only 11.7% of these children had normal MRI findings. There were good correlations between the MRI and clinical findings. CONCLUSIONS: These MRI findings suggest that obstetric mishaps might have occurred in a small proportion of children with CP. A systematic approach to identifying and treating maternal infections needs to be developed. Multiple pregnancies should be monitored closely, and the causes of infant stroke need to be investigated further so preventive strategies can be formulated. All children with CP should have an MRI scan to provide information on the timing and extent of the lesion.
2006
Bax M; Tydeman C; Flodmark O
Jama
2006
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Journal Article
<a href="http://doi.org/10.1001/jama.296.13.1602" target="_blank" rel="noreferrer">10.1001/jama.296.13.1602</a>