1
40
28
-
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
September 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
Use Of Adult-trained Medical Subspecialists By Children Seeking Medical Subspecialty Care.
Publisher
An entity responsible for making the resource available
Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Barriers To care; Consultation; Geographic Access; Pediatrics; Referral; Specialty; Subspecialty; Travel Time
Creator
An entity primarily responsible for making the resource
Ray KN; Kahn JM; Miller E; Mehrotra A
Description
An account of the resource
OBJECTIVES:
To quantify the use of adult-trained medical subspecialists by children and to determine the association between geographic access to pediatric subspecialty care and the use of adult-trained subspecialists. Children with limited access to pediatric subspecialty care may seek care from adult-trained subspecialists, but data on this practice are limited.
STUDY DESIGN:
We identified children aged <16 years in 2007-2012 Pennsylvania Medicaid claims. We categorized outpatient visits to 9 selected medical subspecialties as either pediatric or adult-trained subspecialty visits. We used multinomial logistic regression to examine the adjusted association between travel times to pediatric referral centers and use of pediatric vs adult-trained medical subspecialists for children with and without complex chronic conditions (CCCs).
RESULTS:
Among 1.1 million children, 8% visited the examined medical subspecialists, with 10% of these children using adult-trained medical subspecialists. Compared with children with a ≤30-minute travel time to a pediatric referral center, children with a >90-minute travel time were more likely to use adult-trained subspecialists (without CCCs: relative risk ratio [RRR], 1.94, 95% CI, 1.79-2.11; with CCCs: RRR, 2.33; 95% CI, 2.10-2.59) and less likely to use pediatric subspecialists (without CCCs: RRR, 0.66; 95% CI, 0.63-0.68; with CCCs: RRR, 0.76, 95% CI, 0.73-0.79).
CONCLUSION:
Among medical subspecialty fields with pediatric and adult-trained subspecialists, adult-trained subspecialists provided 10% of care to children overall and 18% of care to children living >90 minutes from pediatric referral centers. Future studies should examine consequences of adult-trained medical subspecialist use on pediatric health outcomes and identify strategies to increase access to pediatric subspecialists.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1016/j.jpeds.2016.05.073
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
Barriers To care
Consultation
Geographic Access
Journal of Pediatrics
Kahn JM
Mehrotra A
Miller E
Pediatrics
Ray KN
Referral
September 2016 List
Specialty
Subspecialty
Travel Time
-
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
September 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
Trainee Experience And Understanding In Paediatric Palliative Care
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
A Hutchinson; S Bertaud
Description
An account of the resource
Aims Despite the growing number of children within the UK who suffer life-limiting or life-threatening conditions, there remain significant barriers to the timely integration of palliative care services for many patients. We sought to evaluate trainee understanding of what these services can offer, and their experiences of palliative care in their day-to-day clinical practice.
Methods An online survey was distributed to paediatric trainees across the UK. We analysed the responses using simple statistical methods as well as performing a qualitative analysis on free text responses.
Results 161 trainees completed the survey, of which 94% reported working with children who suffer life-limiting or life-threatening conditions. A significant proportion of trainees reported being unaware of some of the key roles of palliative care teams, such as supporting children who may later recover and be discharged from palliative care (Table 1). In addition, trainees report palliative care teams being poorly integrated within certain paediatric sub-specialty areas (Figure 1).
Abstract G512(P) Table 1
Abstract G512(P) Table 1
Trainee awareness of paediatric care services
Abstract G512(P) Figure 1
Abstract G512(P) Figure 1
Paediatric palliative care team involvement in sub-specialties
Whilst 98% of trainees reported they would involve palliative care if a child was expected to die soon, fewer acknowledged the need to refer children for whom curative treatment may be feasible but could fail (42%), or before the birth of a child with a fetal diagnosis of a life-threatening or life-limiting condition (65%). 63% of trainees reported being involved in the care of a child where they felt that quality-of-life priorities or the possibility of death were not being openly acknowledged or discussed.
Lack of knowledge about the services available, and concerns about parental perception of palliative care emerged as key barriers to making referrals. 93% of trainees said they would find it helpful to have more training in paediatric palliative care, either from local visits or more specific training.
Conclusion UK paediatric trainees report being unaware of the full remit of palliative care teams, and many describe experiences where these services are difficult to access in their clinical practice. This survey provides an insight into the perceived barriers to better integration of paediatric palliative care, and highlights an area in which both clinicians and their patients may benefit from more dedicated resources and training.
Identifier
An unambiguous reference to the resource within a given context
http://dx.doi.org/10.1136/archdischild-2016-310863.499
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
A Hutchinson
Archives of Disease in Childhood
S Bertaud
September 2016 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
September 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
The Spectrum Of Children’s Palliative Care Needs – A Useful Tool?
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
H Azim
Description
An account of the resource
Paediatric palliative care is characterised by the holistic care provided to children living with life-limiting and life threatening conditions, ranging from providing symptom control to bereavement support. Due to the nature of the conditions many of these children have, health care professionals (HCPs) can find it difficult to recognise when a child would benefit from palliative care input. The Spectrum of Children’s Palliative Care Needs (SCPCN) aims to tackle this problem by encouraging clinicians to consider palliative care involvement if a child has a reduced life expectancy. The results obtained demonstrate that currently, clinicians are using the SCPCN to help predict the life expectancy of children with life-limiting conditions and further improvements can be made to ensure the SCPCN is being used to maximum benefit; for example, introducing regular review of the caseload using the SCPCN could optimise the care being provided. This, in turn, will allow more timely recognition of deterioration of health in this population of children and therefore improve end of life care.
Identifier
An unambiguous reference to the resource within a given context
http://dx.doi.org/10.1136/archdischild-2016-310863.505
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
Archives of Disease in Childhood
H Azim
September 2016 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
September 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
Supporting The Grieving Child And Family
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Caregivers; Pediatrics; Grief; Counseling; Trauma; Children & Youth
Creator
An entity primarily responsible for making the resource
David J Schonfeld; Thomas Demaria
Description
An account of the resource
The death of someone close to a child often has a profound and lifelong effect on the child and results in a range of both short- and long-term reactions. Pediatricians, within a patient-centered medical home, are in an excellent position to provide anticipatory guidance to caregivers and to offer assistance and support to children and families who are grieving. This clinical report offers practical suggestions on how to talk with grieving children to help them better understand what has happened and its implications and to address any misinformation, misinterpretations, or misconceptions. An understanding of guilt, shame, and other common reactions, as well an appreciation of the role of secondary losses and the unique challenges facing children in communities characterized by chronic trauma and cumulative loss, will help the pediatrician to address factors that may impair grieving and children’s adjustment and to identify complicated mourning and situations when professional counseling is indicated. Advice on how to support children’s participation in funerals and other memorial services and to anticipate and address grief triggers and anniversary reactions is provided so that pediatricians are in a better position to advise caregivers and to offer consultation to schools, early education and child care facilities, and other child congregate care sites. Pediatricians often enter their profession out of a profound desire to minimize the suffering of children and may find it personally challenging when they find themselves in situations in which they are asked to bear witness to the distress of children who are acutely grieving. The importance of professional preparation and self-care is therefore emphasized, and resources are recommended.
Identifier
An unambiguous reference to the resource within a given context
doi: 10.1542/peds.2016-2147
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
Caregivers
Children & Youth
Counseling
David J Schonfeld
Grief
Pediatrics
September 2016 List
Thomas Demaria
Trauma
-
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
September 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
Storytelling In The Early Bereavement Period To Reduce Emotional Distress Among Surrogates Involved In A Decision To Limit Life Support In The Icu: A Pilot Feasibility Trial
Publisher
An entity responsible for making the resource available
Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Posttraumatic-stress-disorder; Bereavement; Scale; Posttraumatic-stress-disorder; Depression; Surrogate Decision Making; Intensive-care-unit; Critical Care Medicine; Critically-ill; Terminal Care; Family-members; End; Critical Illness; Self-regulation; Intensive Care; Complicated Grief
Creator
An entity primarily responsible for making the resource
Barnato AE; Schenker Y; Tiver G; Dew MA; Arnold RM; Nunez ER; Reynolds CF
Description
An account of the resource
OBJECTIVES:
Surrogate decision makers involved in decisions to limit life support for an incapacitated patient in the ICU have high rates of adverse emotional health outcomes distinct from normal processes of grief and bereavement. Narrative self-disclosure (storytelling) reduces emotional distress after other traumatic experiences. We sought to assess the feasibility, acceptability, and tolerability of storytelling among bereaved surrogates involved in a decision to limit life support in the ICU.
DESIGN:
Pilot single-blind trial.
SETTING:
Five ICUs across three hospitals within a single health system between June 2013 and November 2014.
SUBJECTS:
Bereaved surrogates of ICU patients.
INTERVENTIONS:
Storytelling and control conditions involved printed bereavement materials and follow-up assessments. Storytelling involved a single 1- to 2-hour home or telephone visit by a trained interventionist who elicited the surrogate's story.
MEASUREMENTS AND MAIN RESULTS:
The primary outcomes were feasibility (rates of enrollment, intervention receipt, 3- and 6-mo follow-up), acceptability (closed and open-ended end-of-study feedback at 6 mo), and tolerability (acute mental health services referral). Of 53 eligible surrogates, 32 (60%) consented to treatment allocation. Surrogates' mean age was 55.5 (SD, 11.8), and they were making decisions for their parent (47%), spouse (28%), sibling (13%), child (3%), or other relation (8%). We allocated 14 to control and 18 to storytelling, 17 of 18 (94%) received storytelling, 14 of 14 (100%) and 13 of 14 (94%) control subjects and 16 of 18 (89%) and 17 of 18 (94%) storytelling subjects completed their 3- and 6-month telephone assessments. At 6 months, nine of 13 control participants (69%) and 16 of 17 storytelling subjects (94%) reported feeling "better" or "much better," and none felt "much worse." One control subject (8%) and one storytelling subject (6%) said that the study was burdensome, and one control subject (8%) wished they had not participated. No subjects required acute mental health services referral.
CONCLUSION:
A clinical trial of storytelling in this study population is feasible, acceptable, and tolerable.
Identifier
An unambiguous reference to the resource within a given context
10.1097/CCM.0000000000002009
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
Arnold RM
Barnato AE
Bereavement
Complicated Grief
Critical Care Medicine
Critical Illness
Critically-ill
Depression
Dew MA
End
Family-members
Intensive Care
Intensive-care-unit
Nunez ER
Posttraumatic-stress-disorder
Reynolds CF
Scale
Schenker Y
Self-regulation
September 2016 List
Surrogate Decision Making
Terminal Care
Tiver G
-
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
September 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
Rituals At End-of-life.
Publisher
An entity responsible for making the resource available
Nursing Clinics Of North America
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Nursing; Death; Pregnancy Loss; Child; Family Presence; Care And Treatment; Resuscitation; Perspectives
Ceremonies; Child Death; Deathbed; End Of Life; Perinatal Loss; Rites; Rituals; Sacraments
Creator
An entity primarily responsible for making the resource
Pace JC; Mobley TS
Description
An account of the resource
Understanding the significance of rituals at the end-of-life enables health care professionals to offer meaningful and compassionate interventions that enhance quality of life and support those dying and those who grieve. Rituals contribute to the strength, capacity, and health of providers who cope with death events. Rituals help the living create continuing bonds with those dying, help with coping skills, and allow healthy growth through opportunities for naming, honoring, and memorializing. The display of respect and a nonjudgmental attitude create a space for support, trust, sharing of emotion, empowerment, and quality of care during end-of-life events.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1016/j.cnur.2016.05.004
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
Care And Treatment
Ceremonies
Child
Child Death
Death
Deathbed
End Of Life
Family Presence
Mobley TS
Nursing
Nursing Clinics of North America
Pace JC
Perinatal Loss
Perspectives
Pregnancy Loss
Resuscitation
Rites
Rituals
Sacraments
September 2016 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
September 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
Quality Indicators And Parental Satisfaction With Perinatal Palliative Care In The Intrapartum Setting After Diagnosis Of A Life-limiting Fetal Condition
Publisher
An entity responsible for making the resource available
Advances In Nursing Science
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Perinatal; State; Model; Program; Decisions; Prenatal-diagnosis; Nursing; Fetal Diagnosis; Palliative Care; Quality Indicators; Experiences; Measurement; Medical Care; Diagnosis; Health Aspects; Palliative Treatment; Fetal Diseases; Analysis; Quality Management; Pregnancy; Medical Diagnosis; Palliative Care; Parents & Parenting; Perception; Quality Of Care
Creator
An entity primarily responsible for making the resource
Wool C; Black BP; Woods AB
Description
An account of the resource
Measurement of quality indicators (QIs) in perinatal palliative care has not been addressed. Parents who chose to continue pregnancy after a diagnosis of a life-limiting fetal condition described perceptions of quality care and their satisfaction with care. This research identified which QIs explained parental satisfaction. High QI scores are associated with parental satisfaction. Parents who were satisfied reported 2.9 times the odds that their baby was treated with dignity and respect and 3.4 times the odds their medical care was addressed. This research is a first step in developing a robust measure of QIs in perinatal palliative care.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1097/ANS.0000000000000147
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
Advances in Nursing Science
Analysis
Black BP
Decisions
Diagnosis
Experiences
Fetal Diagnosis
Fetal Diseases
Health Aspects
Measurement
Medical Care
Medical Diagnosis
Model
Nursing
Palliative Care
Palliative Treatment
Parents & Parenting
Perception
Perinatal
Pregnancy
Prenatal-diagnosis
Program
Quality Indicators
Quality Management
Quality Of Care
September 2016 List
State
Woods AB
Wool C
-
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
September 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
Pop Up: A New Model Of Paediatric Palliative Care
Publisher
An entity responsible for making the resource available
Journal Of Paediatrics And Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Pediatrics; Team
Creator
An entity primarily responsible for making the resource
Martha F Mherekumombe; Jude Frost; Sue Hanson; Elizabeth Shepherd; John Collins
Description
An account of the resource
Children and young people who require palliative care have aheterogeneous range of life-limiting conditions such as a malig-nant disease, chromosomal, neurodegenerative and genetic meta-bolic disorders. The benefits of paediatric palliative care (PPC)continue to be recognised across the world. This increased aware-ness has led to the development of new services and the expan-sion of local programmes globally. The delivery of PPC differs invarious parts of the world depending on available resources,finances, availability of health professionals trained in the care ofchildren requiring palliative care and local health policies.1Healthprofessionals with formal training in the provision of specialistpaediatric palliative care (SPPC) are an integral part of PPC serv-ice delivery. Despite the fact that this area of medicine is a grow-ing field, children in many parts of the world still have no accessto any form of palliative care.2Even in developed countries, most SPPC services are located incities and are found within clinical services provided at tertiarychildren’s hospitals, provided by a team trained to care for thephysical, psychosocial, emotional, spiritual and practical needs ofthe child and family. This team provides the complex care andsupport that children and young people with a life limiting illnessneed as a consequence of high medical need and complicationsrelated to their primary disorder.3–6The SPPC team works inpartnership with families and other carers to improve the qualityof life of the child or young person. The SPPC team can facilitatea multimodal approach to difficult symptom management andhelp link families with appropriate home care, hospital and com-munity services.7
Identifier
An unambiguous reference to the resource within a given context
doi:10.1111/jpc.13276
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
Elizabeth Shepherd
John Collins
Journal of Paediatrics and Child Health
Jude Frost
Martha F Mherekumombe
Pediatrics
September 2016 List
Sue Hanson
Team
-
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
September 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
Pediatric Triage In A Severe Pandemic: Maximizing Survival By Establishing Triage Thresholds
Publisher
An entity responsible for making the resource available
Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Recommendations; Disaster; Allocation; Mass Critical-care; Pandemic; Pediatric Critical Care; Influenza; Critical Care Medicine; Predictors; Triage
Creator
An entity primarily responsible for making the resource
Gall C; Wetzel R; Kolker A; Kanter RK; Toltzis P
Description
An account of the resource
Abstract
OBJECTIVES:
To develop and validate an algorithm to guide selection of patients for pediatric critical care admission during a severe pandemic when Crisis Standards of Care are implemented.
DESIGN:
Retrospective observational study using secondary data.
PATIENTS:
Children admitted to VPS-participating PICUs between 2009-2012.
INTERVENTIONS:
A total of 111,174 randomly selected nonelective cases from the Virtual PICU Systems database were used to estimate each patient's probability of death and duration of ventilation employing previously derived predictive equations. Using real and projected statistics for the State of Ohio as an example, triage thresholds were established for casualty volumes ranging from 5,000 to 10,000 for a modeled pandemic with peak duration of 6 weeks and 280 pediatric intensive care beds. The goal was to simultaneously maximize casualty survival and bed occupancy. Discrete Event Simulation was used to determine triage thresholds for probability of death and duration of ventilation as a function of casualty volume and the total number of available beds. Simulation was employed to compare survival between the proposed triage algorithm and a first come first served distribution of scarce resources.
MEASUREMENTS AND MAIN RESULTS:
Population survival was greater using the triage thresholds compared with a first come first served strategy. In this model, for five, six, seven, eight, and 10 thousand casualties, the triage algorithm increased the number of lives saved by 284, 386, 547, 746, and 1,089, respectively, compared with first come first served (all p < 0.001).
CONCLUSIONS:
Use of triage thresholds based on probability of death and duration of mechanical ventilation determined from actual critically ill children's data demonstrated superior population survival during a simulated overwhelming pandemic.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1097/CCM.0000000000001759
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
Allocation
Critical Care Medicine
Disaster
Gall C
Influenza
Kanter RK
Kolker A
Mass Critical-care
Pandemic
Pediatric Critical Care
Predictors
Recommendations
September 2016 List
Toltzis P
Triage
Wetzel R
-
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
September 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
Parental Involvement In Neonatal Critical Care Decision-making.
Publisher
An entity responsible for making the resource available
Sociology Of Health & Illness
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Sociology; Life; Interrogatives; Consultation; Social Sciences; Biomedical; Decision Making; Shared Decision; Recommendations; Medical Authority; Communication; Conversation; End Of Life Care; Public; Public Environmental & Occupational Health; End; Resistance; Training; Cooperation; Communication; Palliative Care; Decision Making; Intensive Care; Participation; Ethics; Medicine; Physicians; Parents; Conversational Analysis; Decisions; Infant; Palliative Treatment; Parenting; Infants (newborn); Decision Making; Parent And Child; Analysis
Conversation Analysis; Decision-making; End Of Life; Ethics; Neonatal; Parental Involvement
Creator
An entity primarily responsible for making the resource
Shaw C; Stokoe E; Gallagher K; Aladangady N; Marlow N
Description
An account of the resource
The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care at the end of life. Thirty one families were recruited from a neonatal intensive care unit in England and their formal interactions with the doctor recorded. The conversations were transcribed and analysed using conversation analysis. Analysis focused on sequences in which decisions about the redirection of care were initiated and progressed. Two distinct communicative approaches to decision-making were used by doctors: 'making recommendations' and 'providing options'. Different trajectories for parental involvement in decision-making were afforded by each design, as well as differences in terms of the alignments, or conflicts, between doctors and parents. 'Making recommendations' led to misalignment and reduced opportunities for questions and collaboration; 'providing options' led to an aligned approach with opportunities for questions and fuller participation in the decision-making process. The findings are discussed in the context of clinical uncertainty, moral responsibility and the implications for medical communication training and guidance.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1111/1467-9566.12455
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
Aladangady N
Analysis
Biomedical
Communication
Consultation
Conversation
Conversation Analysis
Conversational Analysis
Cooperation
Decision Making
Decision-making
Decisions
End
End Of Life
End Of Life Care
Ethics
Gallagher K
Infant
Infants (newborn)
Intensive Care
Interrogatives
Life
Marlow N
Medical Authority
Medicine
Neonatal
Palliative Care
Palliative Treatment
Parent And Child
Parental Involvement
Parenting
Parents
Participation
Physicians
Public
Public Environmental & Occupational Health
Recommendations
Resistance
September 2016 List
Shared Decision
Shaw C
Social Sciences
Sociology
Sociology of Health & Illness
Stokoe E
Training
-
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
September 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
Parent Perspectives Of Neonatal Intensive Care At The End-of-life
Publisher
An entity responsible for making the resource available
Journal Of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Infant Mortality; Decision Making; Hospitalization; Intensive Care; Palliative Care; Parents & Parenting; Grief
Neonatal Intensive Care Unit; Pediatric Palliative Care; End-of-life Care; Bereavement And Coping; Parental Stress
Creator
An entity primarily responsible for making the resource
Erin R Currie; Becky J Christian; Pamela S Hinds; Samuel J Perna; Cheryl Robinson; Sara Day; Karen Meneses
Description
An account of the resource
Highlights
•Parent experiences surrounding end-of-life care in the NICU were explored.
•The opportunity to be a parent was important regardless of the infant's prognosis.
•NICU nurses played a critical role in facilitating parenting.
•Living with life-and-death decisions was an oscillating process for parents.
•There are areas for improvement in palliative and end-of-life care in the NICU.
This descriptive qualitative study explored parent experiences related to their infant's neonatal intensive care unit (NICU) hospitalization, end-of-life care, and palliative care consultation. “Life and death in the NICU environment" emerged as the primary theme with the following categories: ups and downs of parenting in the NICU, decision-making challenges in the NICU, and parent support. Parents encountered challenges with areas for improvement for end-of-life and palliative care in the NICU. Further research is necessary to understand barriers with integrating palliative care and curative care in the NICU, and how NICU care affects bereavement and coping outcomes after infant death.
Identifier
An unambiguous reference to the resource within a given context
DOI: http://dx.doi.org/10.1016/j.pedn.2016.03.023
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
Becky J Christian
Bereavement And Coping
Cheryl Robinson
Decision Making
End-of-life Care
Erin R Currie
Grief
Hospitalization
Infant Mortality
Intensive Care
Journal of Pediatric Nursing
Karen Meneses
Neonatal Intensive Care Unit
Palliative Care
Pamela S Hinds
Parental Stress
Parents & Parenting
Pediatric Palliative Care
Samuel J Perna
Sara Day
September 2016 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
September 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
Palliative Care For Children In The Community With Static Neurological Conditions – Are We Getting It Right?
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
M Williams; K Ruck; L Hayman
Description
An account of the resource
Background It is notoriously difficult to predict life expectancy for children with static neurological conditions (e.g. cerebral palsy). Identifying factors that make a child likely to be life limited and require an early palliative focus to their care is an ongoing challenge. Referrals for palliative services happen late, or not at all. Recent guidance developed by Helen and Douglas House Hospice, published by Together for Short Lives, aims to redress this using an evidence based traffic light tool.
Aims To determine whether children with static neurological conditions enrolled at a special needs primary school for pupils with profound and multiple learning disabilities are being identified as life limited and referred for palliative care input according to best practice recommendations. To ensure all children felt to clinically warrant palliative care are identified by the traffic light tool.
Methods Enrolment records for 2013 and 2015 from one special needs primary school were obtained. Retrospective review of electronic and paper notes was undertaken to identify children with static neurological conditions, determine whether palliative input had been discussed/utilised and score them according to the traffic light tool. The paediatrician responsible for each child was asked whether they were felt clinically to require palliative services.
Results Across two year groups, 63 children had static neurological conditions. According to the scoring tool, 16 (25%) may have benefited from palliative services. Of these; seven had no palliative input or discussion, nine had hospice involvement, seven were documented as life limited, three had advance care planning and two were referred to palliative care. No children were felt to have been ‘missed’ by the tool’s criteria.
Conclusions In line with national data, we are not identifying many children likely to benefit from a palliative care approach. This hinders timely discussion with parents and onwards referrals. The traffic light tool identifies all patients felt clinically to warrant referral and highlights a proportion of children whose palliative needs are not currently met. Routine scoring has been introduced as a prompt to consider discussions about prognosis, treatment goals and palliative care involvement.
Identifier
An unambiguous reference to the resource within a given context
http://dx.doi.org/10.1136/archdischild-2016-310863.502
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
Archives of Disease in Childhood
K Ruck
L Hayman
M Williams
September 2016 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
September 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
Paediatric Palliative Care: Is It All About Communication? – Quality Improvement Project To Assess And Address Background Knowledge And Training Needs Of A Department
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
Holland C; E Ariffin; A Macleod
Description
An account of the resource
Context This quality improvement project took place in a district general hospital paediatric department. The target population was all doctors in training, consultants, ward nurses and community nurses.
Problem Across the general paediatric team, many people feel poorly equipped to look after life limited and life threatened children, often preferring to ‘leave it to the specialists’. However, these children are regularly admitted to the general paediatric ward during acute illness and cared for as an inpatient requiring everyone to have basic skills and understanding of the principles of palliative care, and experience in dealing with some of the more difficult communication topics. There were sometimes 'mixed messages' or differing language used with these families by staff unfamiliar with these cases, and a heavy reliance on the tertiary centre or specialist, meaning patients and families were often left waiting.
Assessment of problem and analysis of its causes A questionnaire was sent to all acute ward nurses, community nurses, consultants and junior doctors working within the paediatric department. Information gathered included current experience, level of confidence in a range of core palliative care areas such as breaking bad news, symptom management, parallel planning, and knowledge of local guidance and support available.
This enabled us to develop a study day specifically targeted at some of the more challenging concepts for non-specialists.
Intervention A Regional Paediatric Palliative Care Study day was designed using targeted areas as highlighted from the questionnaire. It included interactive communication scenarios using the 'goldfish bowl' technique with professional actors, and seminars on organ donation, hospice involvement, symptom management, the patient/parent perspective and ACPs/DNACPRs.
Study design Quality improvement project.
Strategy for change All those who had shown interest were invited to attend the study day, and it was advertised regionally to ensure a good mix of levels and experience. The study day was held approximately 2 months after the initial questionnaire.
The results of the initial questionnaire were presented as the premise for the content of the study day.
Measurement of improvement A post-course questionnaire was sent out after attendance to ascertain the efficacy of the study day, and to develop any changes that may be required to deliver it again in the future to a different cohort of attendees, and also to explore any further training needs that may be addressed with a second, more advanced day for the current attendees.
Effects of changes Overall pre-course, there were low confidence levels with advance care plans and DNACPR discussions, hospice involvement and symptom management. These areas were addressed by the study day, and post-course attendees commented on how useful the communication scenarios, symptom management and seminars had been in improving their confidence in managing children with life limited/life threatened children.
Lessons learnt We tried to cover too many topic areas within a single study day, therefore leaving attendees wanting more detail in some areas.
It may be better to run it as a two-day study course, but with the days six months apart to allow participants to use the skills and knowledge learnt on the day and then feed back to the group.
Unfortunately there were limited numbers of consultants available to attend the communication scenarios, which may have been helpful to provide experience and balance. Adaptations to timings of the training day are being assessed to encourage more consultant attendees.
Identifier
An unambiguous reference to the resource within a given context
http://dx.doi.org/10.1136/archdischild-2016-310863.564
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
A Macleod
Archives of Disease in Childhood
E Ariffin
Holland C
September 2016 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
September 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
Neonatal Palliative Care: A Quality Improvement Project
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
TA Warlow; K Flood; S Jones
Description
An account of the resource
Our Neonatal Intensive Care Unit (NICU) Bereavement Team, are adapting strategies from the RCPCH Situational Awareness For Everyone (SAFE) Programme, to develop a quality improvement program for neonates with palliative care needs.
Aims
Identify and describe the cohort of infants admitted to NICU requiring palliative care.
Assess the quality of palliative care provided.
Identify and implement quality improvement interventions improving care.
Methods Demographic data was collected from the BadgerNet Database for all infants admitted between January 2010 and March 2014 who died before 12 months old. A thorough notes review was performed for those who died during admission to NICU. Care was compared against national standards obtained from the ‘Together for Short Lives 2009’ and ‘RCPCH 2014’ national guidance. Qualitative data of staff views was collected by standard questions in group discussion.
Results and conclusions 2477 infants were admitted during the study period. 26 died within 12 months of life, 86%(22) requiring significant palliative care input. 38%(9) died during admission to NICU. Causes of death are shown in Figure 1. Decision to reorientate care was recorded in 59%(13), with only 50%(11) documenting any palliative care. Medical and Nursing assessments were comprehensive, whereas spiritual, psychological and social assessments were sporadic (Figure 2). Documentation of end of life planning was incomplete in all cases with no documented staff debriefings. Bereavement support was a single consultant appointment in 6 weeks. Staff felt under-confident providing quality palliative care to infants at the end of life.
Abstract G483 Figure 1
Abstract G483 Figure 1
Causes of death in Neonates admitted to NICU
Abstract G483 Figure 2
Abstract G483 Figure 2
Multiagency care assessments of infants with palliative care needs
Interventions A Bereavement team was formed including a parent representative, in line with SAFE principals. High impact, low cost interventions completed include:
Developing a locally applicable Neonatal palliative care pathway improving documentation and links with hospice and home care teams.
Medical team education sessions and online resource folder.
Nurse bereavement training
New Bereavement Sister role.
Psychologists input obtained for staff.
Procurement of bereavement resources and care equipment.
Following this initial intervention, structured questioning of staff demonstrated improved confidence in managing end of life situations, and improved communication between staff when providing quality palliative care. A formal re-audit is planned following another 20 neonatal deaths.
Identifier
An unambiguous reference to the resource within a given context
http://dx.doi.org/10.1136/archdischild-2016-310863.470
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
Archives of Disease in Childhood
K Flood
S Jones
September 2016 List
TA Warlow
-
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
September 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
Moral Distress In The Everyday Life Of An Intensivist
Publisher
An entity responsible for making the resource available
Frontiers In Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Judgment (ethics); Physicians; Critical Care Medicine; Research; Practice; Pediatric Research; Decision Making; Rj1-57
Moral Distress; Ethics; Medical; End-of-life Care; Decision-making; Pediatric Critical Care Medicine
Creator
An entity primarily responsible for making the resource
Daniel Garros
Description
An account of the resource
A regular work day for intensivists can be emotionally draining, as we witness suffering, fear, pain,
tragedies, unfair treatment of children, death…. We may experience the mental stress of dealing with
nursing shortages, increasing family demands, and frustration related to interpersonal conflicts (e.g.,
between parents and specialists) among other issues (1). For the most part, we learn to manage this
type of stress.
Several studies involving nearly every medical and surgical specialty indicate, however, that
approximately one of every three physicians experiences burnout at any given time. Burnout is characterized
by behaviors such as losing enthusiasm for work (emotional exhaustion), treating people as
if they were objects (depersonalization), and having a sense that work is no longer meaningful (low
personal accomplishment) (2).
Physicians, like other health-care professionals, can be at risk for another phenomenon, that of
moral distress (MoD). This concept emerged in nursing ethics: “a challenge that arises when one
has an ethical or moral judgment about care that differs from those who are in charge” (3). Thus,
institutional constraints were seen as its key source (inadequate staffing, other professionals’ influence,
family or patient choices, administrative agendas, institutional policies, and legislation) (3).
Unlike a moral dilemma in which one is uncertain what ethical action to take, MoD is experienced
by those who feel constrained from acting on their ethical judgment. Constraints are still recognized
frequently as external, institutional ones (4). Internal constraints may be related to perceived powerless,
lack of knowledge, increased moral sensitivity, or even lack of full understanding of a particular
situation. It could also represent a lack of “moral courage” (5).
In 2006, Nathaniel extended the definition, highlighting the consequences of not acting according
with ones’ moral judgment and be participating in perceived moral wrongdoing (6). The word
perceived is very crucial, since we may feel strongly that an action is unethical while a colleague
may feel just as strongly the opposite. It is well known that MoD in pediatric intensive care (PICU)
can be linked to aggressive treatment, witnessing repeated suffering, futile care, and high levels of
chronic disability post discharge and may be aggravated by work environment issues such as power
imbalances, improper communication, decision-making conflicts, unrealistic expectations, lack of
resources or personnel, and a high index of medical errors (2, 7) Corley and colleagues have developed
a scale (MDS), containing 20 clinical situations to assess the frequency to which MoD occurs, as
well as the intensity of the feeling (8) This scale, now on its second version, has been utilized in several
studies (4, 5), including some in the PICU environment (9). As MoD has been more thoroughly
investigated, discussion about the topic has become more prominent in the bioethics literature, with
several journal issues being fully dedicated to the theme (10, 11).
Identifier
An unambiguous reference to the resource within a given context
doi: 10.3389/fped.2016.00091
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
Critical Care Medicine
Daniel Garros
Decision Making
Decision-making
End-of-life Care
Ethics
Frontiers in Pediatrics
Judgment (ethics)
Medical
Moral Distress
Pediatric Critical Care Medicine
Pediatric Research
Physicians
Practice
Research
Rj1-57
September 2016 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
September 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
Keeping All Options Open: Parents' Approaches To Advance Care Planning
Publisher
An entity responsible for making the resource available
Health Expectations
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Advance Care Planning; Children and Young People; Interviews; Life-limiting Conditions; Life-threatening Illnesses; Parents
Creator
An entity primarily responsible for making the resource
Beecham E; Oostendorp L; Crocker J; Kelly P; Dinsdale A; Hemsley J; Russell J; Jones L; Bluebond-Langner M
Description
An account of the resource
BACKGROUND:
Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or experience of ACP.
OBJECTIVE:
To investigate how parents of children and young people with LLCs approach and experience ACP.
METHODS:
Open-ended, semi-structured interviews were conducted with parents of 18 children; nine children who were currently receiving palliative care services, and nine children who had received palliative care and died. Verbatim transcripts of audiotaped interviews were analysed following principles of grounded theory while acknowledging the use of deductive strategies, taking account of both the child's condition, and the timing and nature of decisions made.
RESULTS:
Parents reported having discussions and making decisions about the place of care, place of death and the limitation of treatment. Most decisions were made relatively late in the illness and by parents who wished to keep their options open. Parents reported different levels of involvement in a range of decisions; many wished to be involved in decision making but did not always feel able to do so.
DISCUSSION:
This study highlights that parents' approaches to decision making vary by the type of decision required. Their views may change over time, and it is important to allow them to keep their options open. We recommend that clinicians have regular discussions over the course of the illness in an effort to understand parents' approaches to particular decisions rather than to drive to closure prematurely.
Identifier
An unambiguous reference to the resource within a given context
10.1111/hex.12500
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
Advance Care Planning
Beecham E
Bluebond-Langner M
children and young people
Crocker J
Dinsdale A
Health Expectations
Hemsley J
Interviews
Jones L
Kelly P
Life-limiting Conditions
Life-threatening Illnesses
Oostendorp L
Parents
Russell J
September 2016 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
September 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
How Parents And Physicians Experience End-of-life Decision-making For Children With Profound Intellectual And Multiple Disabilities.
Publisher
An entity responsible for making the resource available
Research In Developmental Disabilities
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adolescent; Adult; Attitude Of Health Personnel; Attitude To Health; Cerebral Palsy; Child; Child Preschool; Decision Making; Disabled Children; Dissent And Disputes; Female; Humans; Infant; Infant Newborn; Intellectual Disability; Male; Middle Aged; Neurologists; Palliative Care; Parents; Pediatricians; Professional-family Relations; Qualitative Research; Resuscitation Orders; Retrospective Studies; Severity Of Illness Index; Terminal Care; Young Adult
Caregiver; End Of Life; Healthcare Professional; Intellectual Disability; Qualitative Research; Shared Decision-making
Creator
An entity primarily responsible for making the resource
Zaal-Schuller IH; Willems DL; Ewals FV; van Goudoever JB; de Vos MA
Description
An account of the resource
BACKGROUND:
End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions.
AIMS:
The objective of this research was to investigate the experiences of the parents and the involved physician during the end-of-life decision-making (EoLDM) process for children with PIMD.
METHODS:
In a retrospective, qualitative study, we conducted semi-structured interviews with the physicians and parents of 14 children with PIMD for whom an EoLD was made within the past two years.
RESULTS:
A long-lasting relationship appeared to facilitate the EoLDM process, although previous negative healthcare encounters could also lead to distrust. Parents and physicians encountered disagreements during the EoLDM process, but these disagreements could also improve the decision-making process. Most parents, as well as most physicians, considered the parents to be the experts on their child. In making an EoLD, both parents and physicians preferred a shared decision-making approach, although they differed in what they actually meant by this concept.
CONCLUSION:
The EoLDM process for children with PIMD can be improved if physicians are more aware of the specific situation and of the roles and expectations of the parents of children with PIMD.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1016/j.ridd.2016.09.012
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
Adolescent
Adult
Attitude Of Health Personnel
Attitude To Health
Caregiver
Cerebral Palsy
Child
Child Preschool
de Vos MA
Decision Making
Disabled Children
Dissent And Disputes
End Of Life
Ewals FV
Female
Healthcare Professional
Humans
Infant
Infant Newborn
Intellectual Disability
Male
Middle Aged
Neurologists
Palliative Care
Parents
Pediatricians
Professional-family Relations
Qualitative Research
Research in Developmental Disabilities
Resuscitation Orders
Retrospective Studies
September 2016 List
Severity Of Illness Index
Shared Decision-making
Terminal Care
van Goudoever JB
Willems DL
Young Adult
Zaal-Schuller IH
-
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
September 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
How Many Children And Young People With Life-limiting Conditions Are Clinically Unstable? A National Data Linkage Study
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Patterns; Prevalence; Palliative Care; Pediatrics; Australian Casemix Classification; England; Health Service; Ethnicity; Care And Treatment; Patient Outcomes; Scotland; Diseases; Management; Intensive Care Units; Registration; Age; Consortia; Diseases; Minority & Ethnic Groups; Hospice Care; Ethnicity; Quality; Medical Research; Patient Admissions; Studies; Councils; College Admissions; Audits; Datasets; Palliative Care; Hospitals
End-of-life Care; Life-limiting Conditions; Picanet; Palliative Care; Routine data
Creator
An entity primarily responsible for making the resource
Stuart Jarvis; Roger C Parslow; Pat Carragher; Bryony Beresford; Lorna K Fraser
Description
An account of the resource
Objective To determine the clinical stage (stable, unstable, deteriorating or dying) for children and young people (CYP) aged 0–25 years in Scotland with life-limiting conditions (LLCs).
Design National cohort of CYP with LLCs using linked routinely collected healthcare data.
Setting Scotland.
Patients 20 436 CYP identified as having LLCs and resident in Scotland between 1 April 2009 and 31 March 2014.
Main outcome Clinical stage based on emergency inpatient and intensive care unit admissions and date of death.
Results Over 2200 CYP with LLCs in Scotland were unstable, deteriorating or dying in each year. Compared with 1-year-olds to 5-year-olds, children under 1 year of age had the highest risk of instability (OR 6.4, 95% CI 5.7 to 7.1); all older age groups had lower risk. Girls were more likely to be unstable than boys (OR 1.15, 95% CI 1.06 to 1.24). CYP of South Asian (OR 1.61, 95% CI 1.28 to 2.01), Black (OR 1.58, 95% CI 1.04 to 2.41) and Other (OR 1.33, 95% CI 1.02 to 1.74) ethnicity were more likely to experience instability than White CYP. Deprivation was not a significant predictor of instability. Compared with congenital abnormalities, CYP with most other primary diagnoses had a higher risk of instability; only CYP with a primary perinatal diagnosis had significantly lower risk (OR 0.23, 95% CI 0.19 to 0.29).
Conclusions The large number of CYP with LLCs who are unstable, deteriorating or dying may benefit from input from specialist paediatric palliative care. The age group under 1 and CYP of South Asian, Black and Other ethnicities should be priority groups.
Identifier
An unambiguous reference to the resource within a given context
http://dx.doi.org/10.1136/archdischild-2016-310800
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
Age
Archives of Disease in Childhood
Audits
Australian Casemix Classification
Bryony Beresford
Care And Treatment
College Admissions
Consortia
Councils
Datasets
Diseases
End-of-life Care
England
Ethnicity
Health Service
Hospice Care
Hospitals
Intensive Care Units
Life-limiting Conditions
Lorna K Fraser
Management
Medical Research
Minority & Ethnic Groups
Palliative Care
Pat Carragher
Patient Admissions
Patient Outcomes
Patterns
Pediatrics
Picanet
Prevalence
Quality
Registration
Roger C Parslow
Routine data
Scotland
September 2016 List
Stuart Jarvis
Studies
-
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
September 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
G485 Emergency Care Planning – Are We Discussing It, Are We Recording It, And Are We Acting On It? An Audit Of Ecp Implementation In Children With Life Limiting Conditions
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
G Artis; C Cunningham; R Halpin-Evans; Hain R
Description
An account of the resource
Aim The use of Emergency care plans (ECPs) is recommended by ‘Together for Short Lives’, (TFSL) to prevent inappropriate escalation to futile interventions in children with incurable life-limiting conditions (LLC).
The aim was to assess compliance with TSFL guidelines for ECP in children on a High-Dependency Unit (HDU), at a large children’s hospital:
proportion of children with completed ECPs
whether care during an acute episode was consistent with ECP
Methods Children with LLCs admitted to HDU over a 6 month period were identified. Underlying condition; reason for admission; record of discussion of end-of-life (EoL) preferences; HDU treatment; escalation to PICU.
Results 45 patients were evaluable. Fourteen (31.1%) patient notes recorded EoL preference. (24.4% completed ECP, 6.7% discussion alone). In two cases preferences were not followed because situation changed (1 parental wishes, 1 alternative intervention). 3/11 ECPs were physical hard copies in the notes that would be sought in an emergency, five could not be located.
Conclusions Documentation of preference in EoL care should be accessible in 100% of patients with LLC admitted to HDU. That target was not reached. For most, there was no record of any EoL discussion. Documentation was mis-filed in many cases, potentially rendering it difficult to access at crucial points in patient care. Where ECPs were in place, they were followed unless there was a reason for deviation.
Identifier
An unambiguous reference to the resource within a given context
http://dx.doi.org/10.1136/archdischild-2016-310863.472
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
Archives of Disease in Childhood
C Cunningham
G Artis
Hain R
R Halpin-Evans
September 2016 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
September 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
Evaluation Of The Need For A Paediatric Palliative Care Service In The West Of Scotland
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Palliative Care; Paediatric Staffing; Health Service; Paediatric Practice
Creator
An entity primarily responsible for making the resource
Downie J; A McGettrick; RM Bland; C Kidson
Description
An account of the resource
Abstract
Aims To assess how many children access palliative care services across NHS Greater Glasgow, their specific needs, if these are addressed by current services, and whether a dedicated palliative care service is required.
Methods A semi-structured survey, containing 22 questions, was sent by email, to all paediatric consultants, associate specialists and speciality doctors in NHS Greater Glasgow between October 2014–April 2015 (107 recipients). Data were analysed using a mixed methods approach; thematic analysis was performed on free text responses.
Results 76 recipients responded to the survey of whom 95% were consultants, and 83% worked in a tertiary children’s hospital. 54% stated that palliative care comprised < 5% of their workload; compared to 8% stated it was >50%. 69% felt they lacked time, and 67% the resources, to sufficiently address their patients’ palliative needs. The most common palliative needs of patients were identified as immediate end of life care (91%), family support (84%), nutritional support (81%), and social /emotional (83%) support care needs, whilst spiritual needs (49%) were less commonly identified. Dominant themes emerging as barriers to palliative care provision included: failure of identification of a child’s palliative care needs by their primary speciality, lack of current services particularly in relation to community nursing support, difficulties accessing current palliative care services (including how to refer patients and what services are available), and no identified lead clinician for palliative care. 55% of respondents commented on positive interactions with the local children’s hospice, including support for end of life care and sibling support; and the role of specialist nurses and the family support service. 88% of participants expressed a desire for a dedicated children’s palliative care service. Participants were asked to comment on the services they would expect. Eight themes were identified including, the need for on-call clinical support, coordination of services, and improvement of bereavement services.
Conclusions Paediatricians from a range of specialties lack the time and resources to provide the specialist palliative care children need. There is a significant need in Greater Glasgow for the development of a dedicated paediatric palliative care service.
Identifier
An unambiguous reference to the resource within a given context
http://dx.doi.org/10.1136/archdischild-2016-310863.471
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
A McGettrick
Archives of Disease in Childhood
C Kidson
Downie J
Health Service
Paediatric Practice
Paediatric Staffing
Palliative Care
RM Bland
September 2016 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
September 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
Do Specialist Paediatric Palliative Care Services Benefit Children And Young People Patients With Life-limiting Or Life-threatening Conditions And Their Families?
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
S Mitchell; A Morris; K Bennett; J Dale
Description
An account of the resource
Background Children and young people (CYP) with life-limiting (LLC) and life-threatening (LTC) conditions represent a growing and significant patient population. The effective delivery of integrated, holistic palliative healthcare for patients with life-limiting conditions with a focus on the delivery of this care in the community presents a significant future challenge in healthcare. Specialist paediatric palliative care services (SPPC) are those provided by professionals who have received specialist training in the area. Currently the availability and provision of SPPC services is variable internationally.
Aims The aims of this review are to:
Identify systematically the current research specifically concerning SPPC specifically defined as teams supported by a specialist physician in paediatric palliative medicine.
Critically review the quality and findings of current research, particularly regarding potential benefits to CYP and their families who receive SPPC.
Make recommendations for future research.
Methods A systematic review of studies of SPPC services published in English from 1980–2015. The databases Cochrane, MEDLINE, PubMed, EMBASE, CINAHL, and AMED were searched. SPPC services were defined as those provided by professionals who have received specialist level training, including a paediatric palliative medicine consultant.
Results Six studies were identified. The study findings suggest that SPPC services can impact beneficially on the care of CYP and their families particularly in five key areas. The provision of SPPC can result in a reduction in the rate of planned hospital admissions; more CYP dying at home; improved quality of life including a higher chance that the CYP has an experience that adds meaning to their life; symptom control; and parents feeling supported by services psychologically and in activities of daily living.
Conclusion There is an emerging evidence base to show that the provision of SPPC services can contribute beneficially to the care and experiences of CYP with LTCs and LLCs. This is a clinically and ethically challenging area to study. We identified several studies currently in progress. Further research into the mechanisms by which the benefits to CYP and their families are achieved through the delivery of SPPC, as well as more in-depth research into specific elements of service provision is recommended.
Identifier
An unambiguous reference to the resource within a given context
http://dx.doi.org/10.1136/archdischild-2016-310863.504
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
A Morris
Archives of Disease in Childhood
J Dale
K Bennett
S Mitchell
September 2016 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
September 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
Children With Minimal Chance For Cure: Parent Proxy Of The Child's Health-related Quality Of Life And The Effect On Parental Physical And Mental Health During Treatment.
Publisher
An entity responsible for making the resource available
Journal Of Neuro-oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Pediatric Cancer; Oncology; Validity; Pedsql(tm); Impact; Module; Palliative Care; Diffuse Intrinsic Pontine Glioma; Clinical Neurology; Reliability; Pediatric Brain Tumor; Quality Of Life
Diffuse Intrinsic Pontine Glioma; Palliative Care; Pediatric Brain Tumor; Quality Of Life
Creator
An entity primarily responsible for making the resource
Mandrell B; Baker J; Levine D; Gattuso J; West N; Sykes A; Gajjar A; Broniscer A
Description
An account of the resource
Abstract
To assess health-related quality of life (HRQOL) from the time of diagnosis until disease progression in a cohort of children with diffuse intrinsic pontine glioma (DIPG). The assessment was collected from the perspectives of the child and their parents and evaluated the effect of the child's HRQOL on their parents' physical and mental well-being, thus providing insight into the optimal timing of palliative consultation, including anticipatory grief and bereavement services. This longitudinal study assessed 25 parents and their children, ages 2-17 years of age with DIPG across five time-points, baseline and weeks 2, 4, 6, 16, 24. Assessments included the PedsQL 4.0 Core Scales, PedsQL 3.0 Brain Tumor Scale, and Short-Form 36. HRQOL instruments were completed by the child (age ≥5 years) and parent-proxy (ages 2-17 years), with the parent completing the SF-36. Children's reports and parents' proxy of their child's HRQOL indicated poor physical functioning and increased anxiety at the initiation of therapy. A trending improvement in the children's HRQOL was reported by children and parents from baseline to week 6, with a decline at week 16. The childs' parent proxy reported cognitive problems, procedural anxiety and lower overall brain tumor HRQOL were assoicated with poorer self-reported parental mental status. Palliative care consultation should be initiated at the time of diagnosis and is supported in the high physical and emotional symptom burden reported by our patients, with heightened involvement initiated at 16 weeks. Prompt palliative care involvement, mitigating anxiety associated with clinic visits and procedures, management of brain tumor specific symptoms, advanced care planning, anticipatory grief and bereavement services, and care coordination may maximize HRQOL for patients and ensure positive long-term outcomes for parents of children with DIPG.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1007/s11060-016-2187-9
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
Baker J
Broniscer A
Clinical Neurology
Diffuse Intrinsic Pontine Glioma
Gajjar A
Gattuso J
Impact
Journal of Neuro-Oncology
Levine D
Mandrell B
Module
Oncology
Palliative Care
Pediatric Brain Tumor
Pediatric Cancer
Pedsql(tm)
Quality Of Life
Reliability
September 2016 List
Sykes A
Validity
West N
-
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
September 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
An Evaluation Of Non-medical Prescribing In A Children’s Hospice Service
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
HF Crooks; C Porter; K Cowling; R Leishman; F Reid; PA Boutcher; PJ Carragher
Description
An account of the resource
Abstract
Background Extensive changes to legislation in the last 15 years have led to a rapid expansion of the role of non-medical prescribers (NMPs). There appears to be a paucity of information evaluating the role that NMPs can play in paediatric palliative care settings. This study examines the role of NMPs in a children’s hospice service.
Aims The primary objective of this evaluation was to determine if non-medical prescribing has reduced remote prescribing episodes, enhanced individuals’ professional practice and supported medical sustainability within a children’s hospice service.
Methods A questionnaire was distributed to nursing and medical staff employed by the children’s hospice service to examine their attitudes and opinions of non-medical prescribing. Six months’ of prescribing data was collected by all four actively prescribing NMPs within the organisation. This data was compared with data from one year previously when the organisation had only one newly qualified NMP in place.
Results The questionnaire demonstrates a general feeling amongst the nursing and medical teams that non-medical prescribing has led to a positive impact on the children and families, and enabled more timely access to medicines.
Abstract G521(P) Figure 1
Abstract G521(P) Figure 1
Type of prescriping event (2015 data)
Abstract G521(P) Figure 2
Abstract G521(P) Figure 2
Categories of medicines prescribed (2015 data)
There was a significant increase in the proportion of prescribing that Schedule 2–5 controlled drugs (CDs) represented (2% in the initial evaluation compared to 13.5% in the 2015 evaluation). This may represent the increased role that NMPs are playing in symptom management and anticipatory prescribing towards end of life.
The ages of the children and young people for whom prescriptions were issued by NMPs were analysed (Figure 3).
Abstract G521(P) Figure 3
Abstract G521(P) Figure 3
Prescribing by age
Conclusion NMPs are having a significant impact in a children’s hospice service in terms of improving the care of children and young people and enhancing individuals’ own professional practice. Further research should focus on children’s and families’ experiences of non-medical prescribing in the children’s hospice setting.
Identifier
An unambiguous reference to the resource within a given context
http://dx.doi.org/10.1136/archdischild-2016-310863.508
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
Archives of Disease in Childhood
C Porter
F Reid
HF Crooks
K Cowling
PA Boutcher
PJ Carragher
R Leishman
September 2016 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
September 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
Advanced Planning In Perinatal Palliative Care – Are We Making Clear End Of Life Plans?
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
Downie J; A Khader; M Campbell; Murdoch E
Description
An account of the resource
Abstract
Aim With continuing advancements in both antenatal and neonatal care, perinatal palliative continues to pose significant challenge. A number of professional bodies have published best practice guidance on the delivery of palliative care in the postnatal period, including BAPM (2010) and Managed Clinical Networks. An important consideration which is highlighted in all guidance is the use of end of life care plans. These are plans which combine clinical care plans with parental wishes and multidisciplinary team assessment. The aim of this audit was to assess the frequency of use of end-of-life care plans across central Scotland.
Methods A retrospective case note review of all neonatal deaths occurring after 23 weeks gestation in two large tertiary neonatal units in Scotland. A record of neonatal deaths within each unit was obtained from the electronic patient record ‘Badger’ database, between January 2014 and December 2014. A review of both the units admission databases and death certification logs were also undertaken to ensure that all deaths were captured. Full notes were requested from medical records and reviewed by the authors. All neonatal deaths following planned reorientation of care were included, acute deaths in the delivery room or neonatal unit were excluded due to their often sudden and unpredictable nature. The authors reviewed full case notes for completed or partially completed end-of-life care planning.
Results A total of 47 deaths occurred over 2014 between both units. 60% of deaths followed planned reorientation of care. Parents were often involved in discussions regarding plans to reorientate care and parental wishes, both before and after death, were documented in 68% of case notes. The most common plans documented related to planned extubation (94%), however planning regarding analgesia (23%), feeding (4%) and bereavement care (28%) was limited.
Conclusions At present, a large proportion of infants approaching end of life do not have a clear care plan documented. This study has identified that there remains a need for clear and concise documentation of clinical and parental wishes following reorientation of care.
Identifier
An unambiguous reference to the resource within a given context
http://dx.doi.org/10.1136/archdischild-2016-310863.500
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
A Khader
Archives of Disease in Childhood
Downie J
M Campbell
Murdoch E
September 2016 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
September 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
A Study To Investigate Parental Satisfaction With The Allocation Of Respite Care For Their Child By A Children’s Hospice
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
C Wylde
Description
An account of the resource
Abstract
Prior to this study the children’s hospice had no evidence base to demonstrate parental satisfaction regarding the allocation of respite care for their child. The study explored the opinion of parents whose children received respite care at a children’s hospice, how it was allocated and their satisfaction with what they received.
The research adopted a mixed methods approach. All families whose children attended the hospice for respite care were invited to participate by completion of a postal questionnaire. The first six who responded and gave their consent participated in individual semi-structured interviews. The combination of the two data collection methods gave rise to six broad themes through which the data was analysed.
There was a good response rate, sixty two percent of the questionnaires were returned. The results showed parents liked the perceived informality of the current method used to allocate respite care, preferring it to a more formal assessment. Parents valued the relationship that developed with the hospice, felt fairly treated and expressed degrees of satisfaction with the respite care received.
However there was a lack of knowledge about the allocation of respite care. The interviews highlighted the complexity of the relationship parents have with the hospice which could prevent them from articulating concerns.
Knowledge gained from the research and critical reflection on practice has enabled improvements to be made to the allocation of respite care.
Parents receive a leaflet providing information about respite care and its allocation
Guidelines to allocate respite care have been written so the process is carried out in a consistent way
Respite care is regularly reviewed with parents
The children’s hospice must constantly question the effectiveness of the model used to allocate respite care. It should be equitable, consistent, transparent and objective whilst recognising the uniqueness of each family. Clarity of information provided to parents will allow an understanding of the care the hospice can provide alongside the organisational constraints that are integral to the allocation process.
Further areas for research were identified.
Exploration of gratitude for respite care and its impact on the relationship between hospice and parents
Evaluation of the allocation of respite care from an organisational viewpoint.
Identifier
An unambiguous reference to the resource within a given context
http://dx.doi.org/10.1136/archdischild-2016-310863.506
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
Archives of Disease in Childhood
C Wylde
September 2016 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
September 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
"you Know The Medicine, I Know My Kid": How Parents Advocate For Their Children Living With Complex Chronic Conditions
Publisher
An entity responsible for making the resource available
Health Communication
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
Rafferty KA; Sullivan SL
Description
An account of the resource
Caring for a child with a chronic condition has received considerable attention in the pediatric health literature. Today, approximately 1 out of 5 North American children are diagnosed with a chronic condition that requires parents to become caregivers and advocates. Although advocacy is regarded as a significant aspect to parental caregiving, more research is needed to better define this oversimplified and misrepresented concept in clinical practice and research. Subsequently, we interviewed 35 parents of children diagnosed with complex chronic conditions. Within our analysis, we identified three themes that elaborate upon how parental advocacy is socially constructed through communication behaviors and partnerships with other people (e.g., medical professionals, family, school educators). We also discuss the emotional side of advocacy, and proffer suggestions to practitioners who work with parents to form collaborative care teams.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1080/10410236.2016.1214221
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
Health Communication
Rafferty KA
September 2016 List
Sullivan SL
-
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
September 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
"you Don't Know Until You Get There": The Positive And Negative "lived" Experience Of Parenting An Adult Child With 22q11.2 Deletion Syndrome.
Publisher
An entity responsible for making the resource available
Health Psychology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
22q11.2 Deletion Syndrome; Ipa; Developmental-disabilities; Mothers; Stress; Psychology Clinical; Velo-cardio-facial Syndrome; Trauma; Interpretative Phenomenological Analysis; Velo-cardio-facial Syndrome; Families; Psychological Growth; Psychology; Symptoms; Prevalence; Disorders; Traumatic Distress
Ipa; Velo-cardio-facial Syndrome; 22q11.2 Deletion Syndrome; Traumatic Distress; Psychological Growth
Creator
An entity primarily responsible for making the resource
Goodwin J; McCormack L; Campbell LE
Description
An account of the resource
OBJECTIVES:
22q11.2 deletion syndrome (22q11DS), a complex genetic syndrome associated with more than 180 features, presents complex challenges for parents including gaining a diagnosis. This phenomenological study sought the "lived" interpretations of parents supporting an adult child with 22q11DS, a poorly researched area.
METHOD:
Interpretative phenomenological analysis informed a detailed and open exploration of parenting a child through to adult life with 22q11DS. Using in-depth semistructured interviews, 8 parents (2 male, 6 female) of adult children with 22q11DS were individually interviewed; providing the data set for transcription and thematic analysis.
RESULTS:
Losing "I" Finding "self," overarched 6 subordinate themes that emerged from participants' articulated descriptions of psychological distress and psychological growth. Distress in parenting a child with 22q11DS was experienced through stigma, loss, grief, and guilt. Progressively, stigma undermined independence, friendships, and instinctual judgement. Ill-informed hierarchical structures experienced as layers of obstruction and lack of awareness of the syndrome triggered angry advocacy for their child. Diagnosis brought opposing relief and grief. In time, they came to value their unique "accomplishments," collected on their journey with 22q11DS, and in turn, consciously valued authentic "self" expressed through empathy, humility, gratitude, and pride.
CONCLUSION:
Parental distress through societal, educational, and health care invalidation persisted for decades for all participants. Conversely, distress facilitated psychological growth for redefining "self" and role as parents over time. Building on this phenomenological cameo, future research can educate against the plight of 22q11DS families. It can enlighten health care professionals in buffering against associated stigma, blame, and self-doubt, and in fostering psychological well-being. (PsycINFO Database Record
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1037/hea0000415
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
22q11.2 Deletion Syndrome
Campbell LE
Developmental-disabilities
Disorders
Families
Goodwin J
Health Psychology
Interpretative Phenomenological Analysis
Ipa
McCormack L
Mothers
Prevalence
Psychological Growth
Psychology
Psychology Clinical
September 2016 List
Stress
Symptoms
Trauma
Traumatic Distress
Velo-cardio-facial Syndrome
-
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
September 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
are We Looking After Our Neonatal Nursing Colleagues? Experiences From An End Of Life Care Support Study
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
M Banaka; H Barrington; N Holland; M Woodford; V Ponnusamy
Description
An account of the resource
Aims Neonatal death is not uncommon in tertiary neonatal intensive care. Though nurses are focussed on supporting parents through their loss, it is unclear how they are coping with this stress. We therefore aimed to explore the experiences of our nurses during end of life care (EOLC) to identify areas to support.
Method We designed and conducted a 17-item paper-based survey between March and June 2015 exploring the views of nursing staff on their recent EOLC events.
Results 46 (94%) out of 49 nurses completed this survey. 78% of nurses gained knowledge from reading the unit’s bereavement guidelines, while 34% had attended formal training.
Just over half reported being the named nurse for a dying baby, on at least one occasion in the past year. The average confidence rating in their role was 3.2 (scale of 1(low) to 5(high), SD 1.21) with a clear association between seniority and confidence (Figure 1).
Abstract G415(P) Figure 1
Abstract G415(P) Figure 1
Association between seniority and confidence rating
Confident nurses mentioned good consultant support, awareness of procedures and acknowledgement that there is ‘always more to learn’ as their secret for success, while less confident nurses mentioned lack of experience or training, and uncertainty about procedures being the main hurdles. The average confidence rating in providing culturally sensitive bereavement support was lower at 2.56 (SD 1.22).
About 69% received support from a wide range of people and resources and rated this positively (mean 3.78, SD 1.23). (Table 1).
Abstract G415(P) Table 1
Abstract G415(P) Table 1
Sources of support for nurses
Common themes described include strong sense of sadness, frustration over unclear procedures, emotional affect lasting for a week, the value of debrief sessions and a sense of professional satisfaction.
Conclusions Our study highlights varied experiences and support needs of neonatal nurses in providing EOLC to babies and their families. Staff appeared to gain confidence with experience, good support and improved training opportunities. This could be achieved through on-the-job training by working closely with experienced staff or a family support worker, regular debrief sessions and improved access to unit guidelines. We propose to introduce these measures in our unit to support nursing staff to improve their confidence, wellbeing and job satisfaction.
Identifier
An unambiguous reference to the resource within a given context
http://dx.doi.org/10.1136/archdischild-2016-310863.405
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
Archives of Disease in Childhood
H Barrington
M Banaka
M Woodford
N Holland
September 2016 List
V Ponnusamy