Published literature
Publications
Published children's palliative care research: browsable, searchable and filterable by the same taxonomy as researchers, groups and guides.
This library is curated by The Siden Research Team as part of the TRENDS in Pediatric Palliative Care newsletter and library. Learn more about TRENDS and The Siden Research Team and subscribe to read their monthly expert commentaries on their website.
Showing 4126–4150 of 4332 publications
Provision of Services in Perinatal Palliative Care: A Multicenter Survey in the United States
BACKGROUND: Congenital anomalies account for 20% of neonatal and infant deaths in the United States. Perinatal palliative care is a recent addition to palliative care and is meant to meet the needs of families who choose to continue a pregnancy affected by a l…
Psychological distress, health, and socio-economic factors in caregivers of terminally ill patients: a nationwide population-based cohort study
PURPOSE: At some point in life, most people become caregivers to a terminally ill relative. Previous studies have shown that many caregivers experience psychological distress and declining physical health, but these studies have predominantly been conducted in…
Quality Indicators and Parental Satisfaction With Perinatal Palliative Care in the Intrapartum Setting After Diagnosis of a Life-Limiting Fetal Condition
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. Th…
Quality of palliative care for children with cancer
Objectives: Principles of pediatric palliative care (PPC) can and should be incorporated from the time of diagnosis of childhood cancer, concurrent with curative treatments, rather than only being provided as an alternative to those treatments at the end of li…
Rearranging the toes on my baby: Full-time physicians making routine visits as part of the hospice home care team
Objectives * Explain the rationale for a full-time physician as a member of a home hospice team. * Describe the outcomes of an effort to put physicians on home hospice teams. * Describe barriers to implementation. Facts and Assumptions. Hospice care is proven …
Recruiting bereaved parents for research after infant death in the neonatal intensive care unit
Understanding parental experiences following infant death in the neonatal intensive care unit (NICU) is a high research priority and a necessary first step to improving health services. However, recruiting bereaved parents to discuss their experiences on such …
Reducing Perinatal Mortality in Nepal Using Helping Babies Breathe
BACKGROUND AND OBJECTIVE: Newborns are at the highest risk of dying around the time of birth, due to intrapartum-related complications. Our study's objective was to improve adherence to the Helping Babies Breathe (HBB) neonatal resuscitation protocol and reduc…
Reiki for alleviation of physical and psychological distress in end of life care in children with cancer in Pakistan
Background/Objectives: End of life care has been seen as a field fraught with challenges and according to the American Psychological Association, much research is required to make this part of life easy on the children dying from cancer and the caregivers who …
RELATIONSHIP BETWEEN RESPONSE TO STRESS & MEANING MAKING AND THE EFFECTS ON GRIEF AFTER CHILD DEATH
Learning Objectives: Parents that experience the death of a child are at high risk for complicated grief, which may be related to unsuccessful attempts to find meaning in their loss. Responses to stress include involuntary reactions that reflect temperament or…
Religion and Spiritual Care in Pediatric Intensive Care Unit: Parental Attitudes Regarding Physician Spiritual and Religious Inquiry
OBJECTIVE: Parents of seriously ill children require attention to their spiritual needs, especially during end-of-life care. The objective of this study was to characterize parental attitudes regarding physician inquiry into their belief system. MATERIALS AND …
Respite needs of families receiving palliative care
AIM: The care of a child with a life-limiting condition proves an emotional, physical and financial strain on the family that provides care for their child. Respite care is one way which allows carers to receive some relief and support in the context of this b…
Retrospective cross-sectional review of survival rates in critically ill children admitted to a combined paediatric/neonatal intensive care unit in Johannesburg, South Africa, 2013-2015
OBJECTIVE: Report on survival to discharge of children in a combined paediatric/neonatal intensive care unit (PNICU). DESIGN AND SETTING: Retrospective cross-sectional record review. PARTICIPANTS: All children (medical and surgical patients) admitted to PNICU …
Risk Stratification for Opioid Misuse in Children, Adolescents, and Young Adults: A Quality Improvement Project
BACKGROUND: The Pediatric Palliative and Comfort Care Team (PACT) at Cincinnati Children's Hospital Medical Center (CCHMC) provides opioids to a large population of patients in the ambulatory setting. Before this project, PACT had no reliable system to risk st…
"Scared of palliative ": perspectives on palliative care from pediatric nurses caring for children with progressive life shortening illnesses on acute care units
Objectives: Children with Progressive Life Shortening Illnesses (PLSIs) are children whose lives are shrouded with uncertainty as they live with conditions for which cure, and of ten even effective treatments, is not available. Nevertheless, the number of chil…
Screening Criteria Improve Access to Palliative Care in the PICU
OBJECTIVES: To test the ability of palliative care screening criteria to improve access to palliative care services in the PICU and examine the association between palliative care team involvement and ICU and hospital length of stay. DESIGN: Prospective interv…
Shared decision making for infants born at the threshold of viability: a prognosis-based guideline
OBJECTIVE: Making prenatal decisions regarding resuscitation of extremely premature infants, based on gestational age alone is inadequate. We developed a prognosis-based guideline. STUDY DESIGN: We followed a five step approach and used the AGREE II framework:…
Short break and emergency respite care: what options for young people with life-limiting conditions?
BACKGROUND: Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care.
OBJECTIVE: To explore alternative short break and emergency respite …
Siblings of Children With a Complex Chronic Health Condition: Maternal Posttraumatic Growth as a Predictor of Changes in Child Behavior Problems
OBJECTIVE: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. METHODS: Data were collected from a sample of 70 siblings from 58 families …
Siblings of children with life‐limiting conditions: Psychological adjustment and sibling relationships
Background This study explored psychological adjustment and sibling relationships of siblings of children with life‐limiting conditions (LLCs), expanding on previous research by defining LLCs using a systematic classification of these conditions. Methods Thirt…
Somatosensory Test Responses and Physical and Psychological Functioning of Children and Adolescents with Chronic Non-neuropathic Pain: An Exploratory Study
OBJECTIVES: This study was designed to establish preliminary feasibility testing of a set of inherently benign somatosensory stimulus-response tests (to cutaneous and deep stimuli) for bedside or office evaluation of pain disorders in children and adolescents.…
Specialist Pediatric Palliative Care Prescribing Practices: A Large 5-year Retrospective Audit
Introduction: There is a gradual increasing trend in childhood cancers in India and pediatric palliative care in India is an emerging specialty. Prescribing pain and symptom control drugs in children with cancer requires knowledge of palliative care formulary,…
Specialist Pediatric Palliative Care Referral Practices in Pediatric Oncology: A Large 5-year Retrospective Audit
Purpose: To audit referral practices of pediatric oncologists referred to specialist pediatric palliative care services. Patients and Methods: Retrospective review of medical case records of pediatric palliative care patients over a period of 5 years from Janu…