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 3176–3200 of 4332 publications
Children With Intellectual Disability and Hospice Utilization: The Moderating Effect of Residential Care
BACKGROUND: Children with intellectual disability commonly lack access to pediatric hospice care services. Residential care may be a critical component in providing access to hospice care for children with intellectual disability. OBJECTIVE/HYPOTHESIS: This re…
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 making lig…
Communicating death and dying through simulation: A project with pediatric residents
Program Goals Pediatric residentscare for a wide spectrum of children with acute and chronic disease processes. They are often the first to communicate with families, yet receive little formal training in conveying difficult information. In 2014, during this a…
Comparing Health Care Provider-Perceived Barriers to Pediatric Palliative Care Fifteen Years Ago and Today
OBJECTIVE: This study examines health care provider perspectives about barriers to pediatric palliative care for seriously ill children 15 years after an initial study within the same academic health system. METHODS: Anonymous validated surveys were sent elect…
Comparison of mothers and grandmothers physical and mental health and functioning within 6 months after child NICU/PICU death
Losing a child is devastating for parents and grandparents. Family and friends generally focus on comforting and supporting the bereaved parents, unintentionally ignoring the bereaved grandparents. Grandmothers and grandfathers often struggle with wanting to h…
Compassion fatigue, burnout, and compassion satisfaction in pediatric palliative care (PC) providers in the U.S
Purpose: Compassion fatigue (CF) is emotional distress experienced by providers from ongoing contact with patients' suffering. Burnout (BO) is personal distress due to uncontrollable workplace factors that manifest in career dissatisfaction. CF and BO can each…
Conflicting realities experienced by children with life-limiting and life-threatening conditions when transitioning to adult health services
AIMS: The aim of this study was to report a secondary qualitative analysis exploring the cultural and practical differences that young people and parents experience when transitioning from children's to adult services. BACKGROUND: Despite two decades of resear…
Courageous conversations: Advance care planning and family communication
Background/Objectives: Discussing end-of-life (EoL) care is very challenging for adolescents and young adults (AYA) living with cancer. While many helpful documents exist to facilitate EoL conversations with adults, few resources exist to aid AYA in communicat…
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 professional distr…
Culinary arts as reinforcement for paediatric end-of-life suffering
This article presents a support model of paediatric suffering based on a culinary activity guided by the nurse. It is based on a clinical end-of-life situation for a child in a Cameroon hospital. The caring approach helps to strengthen psycho-emotional links b…
Decision-making at the limit of viability: Differing perceptions and opinions between neonatal physicians and nurses
Background: In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits of viabili…
Defining Provider-Prioritized Domains of Quality in Pediatric Home-Based Hospice and Palliative Care: A Study of the Ohio Pediatric Palliative Care and End-of-Life Network
BACKGROUND: In 2017, the Ohio Pediatric Palliative Care and End-of-Life Network (OPPEN) published nine domains of high-quality care for pediatric home-based hospice and palliative care (HBHPC). Eight domains established by the National Consensus Project (NCP) …
Development and delivery of a one-stop multidisciplinary clinic to provide comprehensive palliative and supportive care for children with cancer
Background/Objectives: To address a service gap at the primary treating Center arising from patient overload and on holidays/weekends, Cankids Pediatric Palliative Care Center in Delhi was providing children with cancer inpatient admissions and ambulatory care…
Development and Implementation of an End-of-Life Curriculum for Pediatric Residents
BACKGROUND: Caring for a child near the end of life (EOL) can be a stressful experience. Resident physicians are often the frontline providers responsible for managing symptoms, communicating difficult information, and pronouncing death, yet they often receive…
Development and Implementation of a Pediatric Palliative Care Program in a Developing Country
Palliative care is recognized as an important component of care for children with cancer and other life-limiting conditions. In resource limited settings, palliative care is a key component of care for children with cancer and other life-limiting conditions. G…
Development and Implementation of a Survey to Assess Health-Care Provider's Competency, Attitudes, and Knowledge About Perinatal Palliative Care.
Perinatal palliative care is an emerging area of health care. To date, no published tools assess health-care provider's knowledge and level of comfort in providing such care. A 2-phase study was undertaken to develop and implement a survey to evaluate the self…
Development and pilot testing of a coping kit for parents of hospitalized children
Objective
Serious pediatric illness places great stress on families. Parents who learn coping skills may better manage these stressors. This study sought to develop and refine a stress coping intervention for parents of hospitalized children, assess the interv…
Development of a Psychosocial Risk Screener for Siblings of Children With Cancer: Incorporating the Perspectives of Parents
ObjectiveAlthough many siblings experience distress after a child’s cancer diagnosis, their psychosocial functioning is seldom assessed in clinical oncology settings. One barrier to systematic sibling screening is the lack of a validated, sibling-specific scre…
Development of symptom assessment service at a children's hospice
Background and aims High symptom burden has been recognised in children with life-limiting conditions (LLC) and symptom assessment and management is a core component of children's palliative care (CPC). A previous audit highlighted a high prevalence of problem…
Digital Clinical Communication for Families and Caregivers of Children or Young People With Short- or Long-Term Conditions: Rapid Review
BACKGROUND: The communication relationship between parents of children or young people with health conditions and health professionals is an important part of treatment, but it is unclear how far the use of digital clinical communication tools may affect this …
Discussing Death as a Possible Outcome of PICU Care
OBJECTIVES: To describe practical considerations related to discussions about death or possible death of a critically ill child. DATA SOURCES: Personal experience and reflection. Published English language literature. STUDY SELECTION: Selected illustrative stu…
Documentation of breakthrough pain in narrative clinical records of children with life-limiting conditions: Feasibility of a retrospective review
This study explored the feasibility of generating reliable information on the frequency, nature and management of breakthrough pain (BTP) in children with life-limiting conditions and life-threatening illnesses (LTIs) from narrative clinical records. In the ab…
Do-Not-Resuscitate Orders in the Neonatal ICU: Experiences and Beliefs Among Staff
OBJECTIVES: Studies in adult patients have shown that do-not-resuscitate orders are often associated with decreased medical intervention. In neonatology, this phenomenon has not been investigated, and how do-not-resuscitate orders potentially affect clinical c…
"Don't bother about me". The grief and mental health of bereaved adolescents
Death of a relative or friend is a potentially disruptive event in the lives of adolescents. To provide targeted help, it is crucial to understand their grief and mental health experiences. Thematic analysis of 39 semi-structured telephone interviews yielded t…
Drug Abuse and Diversion in Pediatric Palliative Care-What You Should Know, What You Can Do, and What You Can Learn from Our Multisite Experience
Background Prescription drug abuse is an epidemic in the US, leading to increased government oversight in opioid prescribing. The issue becomes more complicated when minor children are involved. One pediatric palliative care team found that of 62 consecutive c…