1
40
3
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2018 List
URL Address
<a href="http://doi.org/10.1017/s1047951117002761" target="_blank" rel="noreferrer">http://doi.org/10.1017/s1047951117002761</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
A randomised trial of early palliative care for maternal stress in infants prenatally diagnosed with single-ventricle heart disease
Publisher
An entity responsible for making the resource available
Cardiology In The Young
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Chd; Hypoplastic Left Heart Syndrome; Paediatric palliative care; Parental stress
Creator
An entity primarily responsible for making the resource
Hancock HS; Pituch K; Uzark K; Bhat P; Fifer C; Silveira M; Yu S; Welch S; Donohue J; Lowery R; Aiyagari R
Description
An account of the resource
Children with single-ventricle disease experience high mortality and complex care. In other life-limiting childhood illnesses, paediatric palliative care may mitigate maternal stress. We hypothesised that early palliative care in the single-ventricle population may have the same benefit for mothers. In this pilot randomised trial of early palliative care, mothers of infants with prenatal single-ventricle diagnoses completed surveys measuring depression, anxiety, coping, and quality of life at a prenatal visit and neonatal discharge. Infants were randomised to receive early palliative care - structured evaluation, psychosocial/spiritual, and communication support before surgery - or standard care. Among 56 eligible mothers, 40 enrolled and completed baseline surveys; 38 neonates were randomised, 18 early palliative care and 20 standard care; and 34 postnatal surveys were completed. Baseline Beck Depression Inventory-II and State-Trait Anxiety Index scores exceeded normal pregnant sample scores (mean 13.76+/-8.46 versus 7.0+/-5.0 and 46.34+/-12.59 versus 29.8+/-6.35, respectively; p=0.0001); there were no significant differences between study groups. The early palliative care group had a decrease in prenatal to postnatal State-Trait Anxiety Index scores (-7.6 versus 0.3 in standard care, p=0.02), higher postnatal Brief Cope Inventory positive reframing scores (p=0.03), and a positive change in PedsQL Family Impact Module communication and family relationships scores (effect size 0.46 and 0.41, respectively). In conclusion, these data show that mothers of infants with single-ventricle disease experience significant depression and anxiety prenatally. Early palliative care resulted in decreased maternal anxiety, improved maternal positive reframing, and improved communication and family relationships.
2018-01
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/s1047951117002761" target="_blank" rel="noreferrer">10.1017/s1047951117002761</a>
Rights
Information about rights held in and over the resource
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).
2018
Aiyagari R
Bhat P
Cardiology In The Young
Chd
Donohue J
Fifer C
Hancock HS
Hypoplastic Left Heart Syndrome
Lowery R
March 2018 List
paediatric palliative care
Parental Stress
Pituch K
Silveira M
Uzark K
Welch S
Yu S
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Perinatal Decision Making For Preterm Infants With Congenital Heart Disease: Determinable Risk Factors For Mortality.
Publisher
An entity responsible for making the resource available
Pediatric Cardiology.
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Cardiac & Cardiovascular Systems; Birth-weight Infants; Necrotizing Enterocolitis; Defects; Pediatrics; Vascular Surgery
Antenatal Counseling; Congenital Heart Disease; Premature; Trial Of Therapy
Creator
An entity primarily responsible for making the resource
Lynema S; Fifer C; Laventhal N
Description
An account of the resource
For premature infants with congenital heart disease (CHD), it may be unclear when the burdens of treatment outweigh potential benefits. Parents may thus have to choose between comfort care at birth and medical stabilization until surgical repair is feasible. Better defined outcome data, including risk factors for mortality, are needed to counsel expectant parents who are considering intensive care for premature infants with CHD. We sought to evaluate outcomes in this population to inform expectant parents considering intensive versus palliative care at birth. We performed a retrospective cohort study of infants born <34 weeks who received intensive care with critical or moderately severe CHD predicted to require surgery in the neonatal period or the first 6 months of life. 46 % of 54 infants survived. Among non-survivors, 74 % died prior to surgery (median age 24 days). Of the infants that underwent surgery, 75 % survived. Survival was lower among infants <32 weeks gestational age (GA) (p = 0.013), with birth weight (BW) <1500 g (p = 0.011), or with extra-cardiac anomalies (ECA) (p = 0.015). GA and ECA remained significant risk factors for mortality in multiple logistic regression analysis. In summary, GA < 32 weeks, BW < 1500 g, and ECA are determinable prenatally and were significant risk factors for mortality. The majority of infants who survived to cardiac intervention survived neonatal hospitalization, whereas most of the infants who died did so prior to surgery. For some expectant parents, this early declaration of mortality may support a trial of intensive care while avoiding burdensome interventions.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1007/s00246-016-1374-y
Rights
Information about rights held in and over the resource
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).
2016
Antenatal Counseling
April 2016 List
Birth-weight Infants
Cardiac & Cardiovascular Systems
Congenital Heart Disease
Defects
Fifer C
Laventhal N
Lynema S
Necrotizing Enterocolitis
Pediatric cardiology.
Pediatrics
Premature
Trial Of Therapy
Vascular Surgery
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Impact Of Early Palliative Care Intervention On Maternal Stress In Mothers Of Infants Prenatally Diagnosed With Single Ventricle Heart Disease: A Randomized Clinical Trial.
Publisher
An entity responsible for making the resource available
Journal Of The American College Of Cardiology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Mothers; Communication; Palliative Care; Families & Family Life; Anxieties; Cardiovascular Disease
Creator
An entity primarily responsible for making the resource
Hancock H; Pituch K; Uzark K; Bhat P; Fifer C; Silveira M
Description
An account of the resource
Background: Children with single ventricle (SV) cardiac defects requiring staged palliation have a high risk of mortality and receive
invasive and complex care, resulting in significant maternal stress. In other complex, life-limiting illnesses among children, pediatric
palliative care (PPC) may mitigate maternal distress. We hypothesized early PPC in the SV population may have the same beneficial effect
upon mothers.
Methods: In this pilot trial of early PPC, mothers of infants with a prenatal diagnosis of SV completed 4 questionnaires measuring anxiety,
depression, coping, and quality of life/family functioning at a prenatal visit (not at initial diagnosis) and again at neonatal discharge. Infants
were randomized to receive early PPC (defined as initial consultation prior to surgery consisting of structured evaluation, psychosocial/
spiritual support, and communication between mothers and care providers) or usual care.
Results: Among 56 eligible subjects, forty mothers enrolled and completed baseline surveys; 38 neonates randomized (18 early PPC, 20
usual care) and 34 postnatal surveys were completed (3 neonates died, 1 mother declined). Baseline Beck Depression Index II and StateTrait
Anxiety Index (STAI) scores exceeded those of a normal pregnant sample (mean 13.76 ± SD 8.46 vs. 7.0 ± 5.0, and 46.34 ± 12.59
vs. 29.8 ± 6.35, respectively; both P=0.0001), but there were no significant differences between study groups. There was a significant
decrease in prenatal to postnatal STAI scores in the early PPC group (-7.6 vs. 0.3 in usual care, P=0.02). Significantly higher postnatal
Brief Cope Inventory scores for positive reframing, an adaptive response, were noted in the early PPC group (P=0.03). The early PPC
group had a positive change in communication and family relationships scores for the Peds QL Family Impact Module (medium effect size
of 0.46 and 0.41, respectively).
Conclusions: In this pilot randomized trial of early PPC, mothers of children with SV heart disease experienced high levels of depression
and anxiety in the prenatal period. Early PPC in the SV population resulted in decreased maternal stress, improved maternal coping, and
improved communication and family relationships.
Identifier
An unambiguous reference to the resource within a given context
doi:10.1016/S0735-1097(16)30921-4
Rights
Information about rights held in and over the resource
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).
2016
Anxieties
April 2016 List
Bhat P
Cardiovascular Disease
Communication
Families & Family Life
Fifer C
Hancock H
Journal of the American College of Cardiology
Mothers
Palliative Care
Pituch K
Silveira M
Uzark K