April 2018 List
Title
April 2018 List
Collection Items
Involvement of nurses in end-of-life discussions for severely disabled children
Background: In children with profound intellectual and multiple disabilities (PIMD), discussions about end-of-life decisions (EoLDs) are comparatively common. Nurses play a crucial role in the care for these children, yet their involvement in EoLD…
Parental assessment of comfort in newborns affected by lifelimiting conditions treated by a standardized neonatal comfort care program
Objective:To assess the perception of parents concerning the state of comfort maintained in their infants born with life-limiting conditions and treated by a standardized neonatal comfort care program.Study Design:Participants were parents (n=35…
Survey on Neonatal End-of-Life Comfort Care Guidelines Across America
Context: Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing…
Parenting in Childhood Life-Threatening Illness: A Mixed-Methods Study
Background: Parenting children with life-threatening illness (LTI) and their healthy siblings requires parents to consider their various needs. Objective and Methods: We conducted a concurrent, cross-sectional mixed-methods study to describe…
Proxy-Reported Quality of Life and Family Impact for Children Followed Longitudinally by a Pediatric Palliative Care Team
Background: One goal of pediatric palliative care is to maintain quality of life for children and their families. Quality-of-life investigations may be enhanced by considering clinically important metrics in addition to statistical significance.…
Bringing social context into the conversation about pediatric long-term ventilation
Decisions to initiate long-term ventilation (LTV) for children with medical complexities often involve unclear risk/benefit ratios. Although the technology may prolong a child's life, the added months to years could largely be spent in the hospital,…
Barriers and facilitators to the implementation of a paediatric palliative care team
Background: Over the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC).…
Going Straight to the Source: A Pilot Study of Bereaved Parent-facilitated Communication Training for Pediatric Subspecialty Fellows
BACKGROUND: Medical trainees consistently report suboptimal instruction and poor self-confidence in communication skills. Despite this deficit, few established training programs provide comprehensive, pediatric-specific communication education,…
End-of-life care of children with diffuse intrinsic pontine glioma
The end-of-life management of children with diffuse intrinsic pontine glioma (DIPG) is challenging. Families cope with debilitating symptoms and make complex decisions regarding their child's care. However, there is little evidence guiding palliative…
Parental Concordance Regarding Problems and Hopes for Seriously Ill Children: A Two-Year Cohort Study
CONTEXT: Parents of a seriously ill child may have different concerns and hopes for their child, and these concerns and hopes may change over time. OBJECTIVES: In a mixed-method prospective cohort of parental dyads of children with serious illness,…
Worth a Try? Describing the Experiences of Families during the Course of Care in the Neonatal Intensive Care Unit When the Prognosis is Poor
OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible…
Becoming a Team: The Nature of the Parent-Healthcare Provider Relationship when a Child is Dying in the Pediatric Intensive Care Unit
PURPOSE: To explore bereaved parents' perspectives of parent and staff roles in the pediatric intensive care unit when their child was dying, and their relationships with healthcare staff during this time. DESIGN AND METHODS: Constructivist grounded…
Assessing the impact of caring for a child with Dravet syndrome: Results of a caregiver survey
OBJECTIVE: The objective of this study was to describe and quantify the impact of caring for a child with Dravet syndrome (DS) on caregivers. METHODS: We surveyed DS caregivers at a single institution with a large population of patient with DS.…
A cross-sectional pilot study of compassion fatigue (CF), burnout (BO), and compassion satisfaction (CS) in pediatric palliative care (PPC) providers in the United States
OBJECTIVE: Compassion fatigue (CF) is secondary traumatic distress experienced by providers from contact with patients' suffering. Burnout (BO) is job-related distress resulting from uncontrollable workplace factors that manifest in career…
Use of Facebook in the maternal grief process: An exploratory qualitative study
This study seeks to explore the potential implications of Facebook use in the process of maternal grief. The participants were 11 women who had lost their children due to accidents or prolonged illness. Semistructured interviews were conducted and…
Palliative care professional's perceptions of barriers and challenges to accessing children's hospice and palliative care services in south east London: A preliminary study
OBJECTIVES: Several barriers have been identified as preventing or delaying accessing to children's palliative care services. The aim of this study is to further explore such barriers from palliative care professionals' perspective from two London…
Death of One Twin during the Perinatal Period: An Interpretative Phenomenological Analysis
BACKGROUND: Perinatal death is one of the most difficult bereavements due to the shock and profound grief experienced by parents. It has been established that such bereavement has a life-lasting impact. Twin pregnancy is associated with increased…
Self-Assessment of Skills and Competencies among Residents Participating in a Pediatric Hospice and Palliative Medicine Elective Rotation
OBJECTIVE: To describe our institutional experience with a four-week pediatric HPM elective rotation and its impact on residents' self-rated competencies. BACKGROUND: In the spirit of bolstering primary hospice and palliative medicine (HPM) skills of…
Physician Perspectives on Palliative Care for Children with Advanced Heart Disease: A Comparison between Pediatric Cardiology and Palliative Care Physicians
BACKGROUND: While the importance of pediatric palliative care (PPC) for children with life-threatening illness is increasingly recognized, little is known about physicians' attitudes toward palliative care for children with heart disease. OBJECTIVE:…
Associations Between Pediatric Palliative Care Consultation and End-of-Life Preparation at an Academic Medical Center: A Retrospective EHR Analysis
OBJECTIVES: Our aim in this study was to understand usage patterns of pediatric palliative care (PPC) consultation and associations with end-of-life preparation among pediatric patients who are deceased. METHODS: We reviewed 233 pediatric…
A Review of the Integrated Model of Care: An Opportunity to Respond to Extensive Palliative Care Needs in Pediatric Intensive Care Units in Under-Resourced Settings
It is estimated that 6.3 million children who die annually need pediatric palliative care (PPC) and that only about 10% of them receive the attention they need because about 98% of them live in under-resourced settings where PPC is not accessible.…
Speaking a Different Language: A Qualitative Analysis Comparing Language of Palliative Care and Pediatric Intensive Care Unit Physicians
Background: Family conferences in the pediatric intensive care unit (ICU) often include palliative care (PC) providers. We do not know how ICU communication differs when the PC team is present. Aim: To compare language used by PC team and ICU…
Advance care discussions with young people affected by life-limiting neuromuscular diseases: A systematic literature review and narrative synthesis
End of life care policy in the UK advocates open discussions between health professionals and patients as the end of life approaches. Despite well documented understanding of the progression of life-limiting neuromuscular diseases, the majority of…
The Lived Experiences of Nurses Caring For Dying Pediatric Patients
Nurses and healthcare professionals may have difficulty adjusting to and comprehending their experiences when a patient's life ends. This has the potential to interfere with patient care. Reflection on past events and actions enables critical…