February 2018 List
Title
February 2018 List
Collection Items
Paediatric advance care planning: Physician experience and education in initiating difficult discussions
AIM: Our study aimed to assess physicians' experiences and education regarding advance care planning (ACP) in paediatrics. We aimed to assess barriers to ACP initiation, including the adequacy of exposure and education regarding ACP and whether…
Bereaved Parents' Health Status During the First 6 Months After Their Child's Death
PURPOSE: To examine bereaved parents' physical, mental, and social health during the first 6 months after their child's (
Development and Assessment of a Measure of Parent and Child Needs in Pediatric Palliative Care
CONTEXT: Pediatric palliative care has no evidence-based needs assessment measure. The Parent and Child Needs Survey (PCNeeds) is a new instrument designed to assess the needs of children in palliative care, including children receiving end-of-life…
Cause of Death in Children With Mitochondrial Diseases
BACKGROUND: We investigated the clinical characteristics that represent risk factors for death in pediatric patients with mitochondrial diseases. METHODS: The medical records of mitochondrial disease pediatric patients attended between 2006 and 2015…
Who tells a mother her baby has died? Communication and staff presence during stillbirth delivery and early infant death
OBJECTIVE: Perinatal loss (stillbirth or early infant death) is often a sudden, unexpected event for families. We evaluated who communicates the loss to the parents and who is there for support at the delivery or death. STUDY DESIGN: We conducted a…
Feeding Intolerance in Children with Severe Impairment of the Central Nervous System: Strategies for Treatment and Prevention
Children with severe impairment of the central nervous system (CNS) experience gastrointestinal (GI) symptoms at a high rate and severity, including retching, vomiting, GI tract pain, and feeding intolerance. Commonly recognized sources of symptoms…
The presence and predictors of complicated grief symptoms in perinatally bereaved mothers from a bereavement support organization
The present study investigated the presence and possible predictors of complicated grief symptoms in perinatally bereaved mothers (N = 121) up to 5 years postbereavement. The presence of complicated grief scores in the clinical range was 12.4%, which…
Enhancing Pediatric Palliative Care for Latino Children and Their Families: A Review of the Literature and Recommendations for Research and Practice in the United States
As the demand for pediatric palliative care (PC) increases, data suggest that Latino children are less likely to receive services than non-Latino children. Evidence on how to best provide PC to Latino children is sparse. We conducted a narrative…
Children's Nurses' experiences in delivering bereavement care to children and families with life limiting conditions in the Irish context
Healthcare providers influence the experiences of families during end of life care and death of a child*. Nurses are best placed to provide bereavement support as they have opportunities to build therapeutic relationships through closely and…
Perinatal palliative care after a stillbirth - Midwives experiences of using Cubitus baby
In Sweden, around 450 babies are stillborn every year. Usually, the parents stay at the hospital a couple of days after the birth and they can have the baby in their room. Due to the importance to keep a dead body cold it has, until recently, been a…
Digital Storytelling: Families' Search for Meaning after Child Death
Bereaved families that collectively make meaning of their grief experiences often function better than those that do not, yet most social work bereavement interventions target individuals rather than family units. In this article, authors describe an…
The Need for a Shared Understanding: Domains of Care and Composition of Team in Pediatric Palliative Care Guidelines
Conceptual confusion is a primary barrier to providing quality palliative care. This study aimed to analyze pediatric palliative care (PPC) guidelines from a conceptual perspective to facilitate a shared understanding of palliative care in…
Continuing Bonds with the Living: Bereaved Parents’ Narratives of their Emotional Relationship with their Children
Abstract
The death of a child can be seen as one of the most devastating experiences for parents which can result in a unique and enduring grief. Parents with surviving children face the task of navigating their own grief while continuing to parent.…
The death of a child can be seen as one of the most devastating experiences for parents which can result in a unique and enduring grief. Parents with surviving children face the task of navigating their own grief while continuing to parent.…
The experiences and needs of healthcare professionals facing perinatal death: A scoping review
BACKGROUND: Globally, perinatal death is on a decline. However, its impact on the healthcare profession is huge. The existing literature focuses on examining perinatal death from parents' perspectives and patient death from the perspectives of nurses…
Exploring the rewards and challenges of paediatric palliative care work - a qualitative study of a multi-disciplinary children's hospice care team
BACKGROUND: Children's hospices are a key provider of palliative care for children and young people with life-limiting and life-threatening conditions. However, despite recent policy attention to the provision of paediatric palliative care, little is…
Association of mortality with the death of a sibling in childhood
Importance: The death of a close relative is associated with an increased mortality risk among the bereaved, but much less is known about the potential association of the death of a sibling in childhood with mortality in this population. Objective:…
Considering quality of life in end-of-life decisions for severely disabled children
BACKGROUND: End-of-life decisions (EoLDs) are very difficult to make. How parents and physicians incorporate quality of life (QoL) considerations into their end-of-life decision making (EoLDM) for children with profound intellectual and multiple…
Impact of child death on paediatric trainees
OBJECTIVE: To assess the prevalence of symptoms of acute stress reactions (ASR) and post-traumatic stress disorder (PTSD) in paediatric trainees following their involvement in child death. DESIGN: A survey designed to identify trainees' previous…
Aspects and intensity of pediatric palliative case management provided by a hospital-based case management team: A comparative study between children with malignant and nonmalignant disease
Objectives: Anticipating case management is considered crucial in pediatric palliative care. In 2012, our children�s university hospital initiated a specialized pediatric palliative care team (PPCT) to deliver inbound and outbound case management for…
How to Increase the Quality of a Suffering Experience: Lessons Derived From the Diary Narratives of a Dying Adolescent Girl
Personal narratives are assumed to be primary sources of the essential meaning of lived experiences of dying. In this study, I analyzed the personal diary of Mirac Fidan, a terminally ill adolescent with advanced cancer who kept a diary until her…
Pediatric Deaths Attributed to Complex Chronic Conditions over 10 Years in Korea: Evidence for the Need to Provide Pediatric Palliative Care
BACKGROUND: Pediatric palliative care (PPC) is the active total care of children suffering from life-threatening illnesses. Palliative care includes symptom management, psychosocial support, and end-of-life care. Despite significant advances in…
Geographic variation in California pediatric hospice care for children and adolescents: 2007-2010
Objective: To map and describe the geographic distribution of pediatric hospice care need versus supply in California over a 4-year time period (2007-2010). Methods: Multiple databases were used for this descriptive longitudinal study. The sample…
The role of hospice in the transition from hospital to home for technology-dependent children-A qualitative study
Aims and objectives To report parent and professional perspectives of step-down care in assisting the transition from hospital to home, within one children's hospice in a constituent country of the United Kingdom. Background In recent years,…
Integrating palliative care in pediatrics
An integrated palliative care plan with goals of therapy that change throughout a child's illness will reflect an individualized, child-centered, and family-centered approach to care. This care plan will act as a foundation to assist and guide all…
Spirituality in patients with advanced illness: The role of symptom control, resilience and social network
In this study, we analyzed the relationships among clinical, emotional, social, and spiritual dimensions of patients with advanced illness. It was a cross-sectional study, with a sample of 108 patients in an advanced illness situation attended by…
The Effect of Pediatric Palliative Care Policy on Hospice Utilization Among California Medicaid Beneficiaries
Context California implemented pediatric palliative care legislations that allowed children to receive curative and supportive care from diagnosis of a life-threatening serious illness in 2010. Palliative care policies may improve access to hospice…
Impact of holding the baby following stillbirth on maternal mental health and well-being: findings from a national survey
OBJECTIVES: To compare mental health and well-being outcomes at 3 and 9 months after the stillbirth among women who held or did not hold their baby, adjusting for demographic and clinical differences. DESIGN: Secondary analyses of data from a postal…
Emerging Collaboration Between Palliative Care Specialists and Mechanical Circulatory Support Teams: A Qualitative Study
Context Despite national requirements mandating collaboration between palliative care specialists and mechanical circulatory support (MCS) teams at institutions that place destination therapy ventricular assist devices, little is known about the…