July 2018 List
Title
July 2018 List
Collection Items
When silence is not golden: Engaging adolescents and young adults in discussions around end-of-life care choices
Managing end-of-life care (EoL) is always emotionally taxing. Honest discussions about prognosis and EoL decision-making are often delayed due to questions about the legal competence of adolescents and young adults (AYA) to make decisions for…
Cultural and religious considerations in pediatric palliative care
OBJECTIVE: A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare.…
Opening end-of-life discussions: how to introduce Voicing My CHOiCESTM, an advance care planning guide for adolescents and young adults
OBJECTIVE: Each year, more than 11,000 adolescents and young adults (AYAs), aged 15-34, die from cancer and other life-threatening conditions. In order to facilitate the transition from curative to end-of-life (EoL) care, it is recommended that EoL…
Healthcare Users' Experiences of Communicating with Healthcare Professionals About Children Who Have Life-Limiting Conditions: A Qualitative Systematic Review
The objective of this review is to identify and synthesize the best international qualitative evidence on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting conditions. For the purposes…
Is it a surprise? Shocking sub-optimal medication safety in children with medical complexity
There are increasing numbers of children with medical complexity (CMC) worldwide. CMC make multiple transitions between healthcare settings and providers; frequently receiving multiple medications. While the risk of medication error in children is…
Nursing Unit Environment Associated with Provision of Language Services in Pediatric Hospices
Background Provision of language services in pediatric hospice enables nurses to communicate effectively with patients who have limited English proficiency. Language barriers contribute to ethnic disparities in health care. While language service use…
Children's outcomes at 2-year follow-up after 4 years of structured multi-professional medical-ethical decision-making in a neonatal intensive care unit
OBJECTIVE: We reviewed our decisions about continuation/withdrawal of life-sustaining treatments in a group of critically ill newborns who were discussed in structured medical ethical decision-making meetings, and provide the surviving children's…
Pain Management in the Pediatric Palliative Care Population
PURPOSE: The purpose of this integrative review was to identify, review, synthesize, and analyze the current literature related to pain management in the pediatric palliative care population from infancy through adolescence. METHODS: The literature…
Impact of the Regional Pediatric Palliative Care Network on the Care of Children on Long-Term Ventilation: Could the Availability of a Residential Solution into the Network Reduce the Duration of Intensive Care Unit Staying for These Patients?
The prevalence of children on long-term ventilation (LTV) at home has increased in many countries. In Italy, there are 4.3/100,000 population younger than 18 years. Pediatric palliative care (PPC) network provides high-level care for these patients.…
Let's Talk About It: Supporting Family Communication during End-of-Life Care of Pediatric Patients
BACKGROUND: Communication is key in optimizing medical care when a child is approaching end of life (EOL). Research is yet to establish best practices for how medical teams can guide intrafamily communication (including surviving siblings) when EOL…
Critical care nurses' experiences of caring for a dying child: A qualitative evidence synthesis
AIM: To synthesise qualitative research examining the experience of critical care nurses caring for a dying child. BACKGROUND: Caring for a dying child remains one of the most difficult aspects of nursing, potentially leading to personal and…
Child’s Play: The Role of Play in Mitigating the Fear of Death Among Pediatric Palliative Care Team Patients, Families, and Caregivers
Terror Management Theory (TMT), derived from Ernest Becker’s The Denial of Death (1974), maintains that humans are motivated by the desire to overcome our fear of death by constructing meaning and significance in our lives in various ways, including…
R Package for Pediatric Complex Chronic Condition Classification
Identification of children with complex chronic conditions (CCCs) is necessary to improve health care delivery and perform clinical research, because this patient population uses significant inpatient and outpatient medical resources.1 The original…
Pharmacological Management of Symptoms in Children with Life-Limiting Conditions at the End of Life in the Asia Pacific
BACKGROUND: The provision of pediatric palliative care in Asia Pacific varies between countries and availability of essential medications for symptoms at the end of life in this region is unclear. OBJECTIVE: To determine medications available and…
Grief and coping of parents whose child has a constant life-threatening disability, hypoplastic left heart syndrome with reference to the Dual-Process Model
This paper reports on a study that examined the grief and coping of 29 parents whose child has hypoplastic left heart syndrome using the Dual Process Model. The study employed a secondary thematic analysis of interviews at key times of treatment and…
End-of-life trends and patterns among children in the US foster care system: 2005-2015
Drawing on national, longitudinal Adoption and Foster Care Analysis and Reporting System data (2005-2015), demographic, health, foster care, and geographic characteristics of decedents (N = 3,653) aged 1-17 years were examined. On average, decedents…
Life after Loss: Parent Bereavement and Coping Experiences after Infant Death in the Neonatal Intensive Care Unit
The death of an infant in the neonatal intensive care unit (NICU) is a profound and unexpected loss for parents that results in a complex process of coping with bereavement. A descriptive qualitative approach was used to explore parent bereavement…
Building Bridges, Paediatric Palliative Care in Belgium: A secondary data analysis of annual paediatric liaison team reports from 2010 to 2014
BACKGROUND: Although continuity of care in paediatric palliative care (PPC) is considered to be an essential element of quality of care, it's implementation is challenging. In Belgium, five paediatric liaison teams (PLTs) deliver palliative care. A…
Low prevalence of palliative care and ethics consultations for children with chronic critical illness
Medical advances over the past two decades have increased the numbers of children who survive serious conditions. Mortality from pre-mature birth and genetic syndromes has improved such that more clinicians offer, and more families request,…
The engagement of young people in their own advance care planning process: A systematic narrative synthesis
BACKGROUND: An increasing number of young people are living with life-limiting conditions. Current research about advance care planning for young people indicates differing experiences for those involved. Understanding how far young people are…
Management of dystonia in paediatric palliative care
Dystonia is a challenging neurological symptom found in paediatric palliative care (PPC).1 While well defined as a movement disorder characterised by sustained or intermittent muscle contractions associated with abnormal movement and posturing,…
Experts' Perspectives Toward a Population Health Approach for Children With Medical Complexity
OBJECTIVE: Because children with medical complexity (CMC) display very different health trajectories, needs, and resource utilization than other children, it is unclear how well traditional conceptions of population health apply to CMC. We sought to…