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 3401–3425 of 4332 publications
Rights of the Dying Child: The Nurses' Perception
Aim: The Charter of the Rights of the Dying Child was formulated as a professional guide for caring the child in the final stages. The study examines the nurses' degree of agreement with the Charter's principles and their perception of the implementation of th…
Screening for Family Psychosocial Risk in Pediatric Cancer: Validation of the Psychosocial Assessment Tool (PAT) Version 3
ObjectiveFamily psychosocial risk screening is an important initial step in delivering evidence-based care. The Psychosocial Assessment Tool (PAT) is a brief parent report screener based on the trilevel Pediatric Psychosocial Preventative Health Model (PPPHM; …
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 all pedi…
'Shutting the World Out': An Interpretative Phenomenological Analysis Exploring the Paternal Experience of Parenting a Young Adult with a Developmental Disability.
BACKGROUND: An in-depth exploration of the experience of midlife fathers of developmentally disabled young adults (aged 19-32 years) was motivated by a dearth of research in this area (McKnight, PsyPAG Quarterly, 94, 2015, 10)., METHOD: Five fathers participat…
Social Media Consequences of Pediatric Death
Social media is an important access point for engagement of children and adolescents. For individuals with a life-limiting illness or serving as the caregiver for an ill child, social media can be a helpful outlet for support and information gathering. It has …
Social worker and chaplain activities with parents of critically ill children with cancer
Learning Objectives: Social workers (SWs) and chaplains (Cs) support families of PICU cancer patients. Few data describe the activities and impact of SWs and Cs (SWs/Cs) in the PICU. This study examined the activities of SWs/Cs caring for PICU cancer or stem c…
Sources of parental hope in pediatric oncology
BACKGROUND: Hope is a multidimensional concept that is important for all parents of children with cancer. However, most work has focused on advanced cancer and poor prognoses. We examined hopes of all parents of children with cancer longitudinally during the f…
Specialist palliative care service for children with life-threatening conditions: A nationwide survey of availability and utilization
CONTEXT: According to the International Observatory on End of Life Care, the level of pediatric palliative care in Japan is Level 2 (capacity building) and the current status of palliative care for children in Japan has not been clarified. OBJECTIVES: To clari…
Specialist palliative care service for children with life-threatening conditions in Japan: A nationwide survey of resources and utilization
Background/Objectives: To clarify the availability and utilization of specialist palliative care services among children with life-threatening conditions in Japan. Design/Methods: A questionnaire was administered to assess the availability of specialist pallia…
Specialized pediatric palliative care services for children dying from cancer: A repeated cohort study on the developments of symptom management and quality of care over a 10-year period
BACKGROUND:: About one quarter of children affected with cancer die. For children and their families, the end-of-life period is highly distressing. AIM:: This study focused on how end-of-life care in pediatric cancer patients changed over a period of 10 years …
Speech-language pathologists in paediatric palliative care: a Delphi study protocol
BACKGROUND: Given the dearth of literature and no clinical practice guidelines written for speech-language pathologists (SLPs) working in paediatric palliative care (PPC), a need has been identified to explore the scope of clinical practice and strategies used…
Spiritual Challenges Experienced by Nurses in Neonatal End of Life: A Qualitative Study
Background The literature reviews show that taking care of dying newborns for a nurse is associated with stress and anxiety, and nurses will be faced with many challenges, the present study aimed to explain the spiritual challenges experienced by nurses in neo…
Status Complexicus? The Emergence of Pediatric Complex Care
Discourse about childhood chronic conditions has transitioned in the last decade from focusing primarily on broad groups of children with special health care needs to concentrating in large part on smaller groups of children with medical complexity (CMC). Alth…
Story time with pediatric palliative care: A community self-care strategy
Objectives * Identify a simple, effective way to facilitate selfcare among hospital team members. * Describe the impact story time has had on the attendees' daily practice and self-care strategies. Background. Story time was born out of a photograph posted on …
Study protocol: evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH study) - work package II: palliative care for pediatric patients
BACKGROUND: In 2007, the European Association of Palliative Care (EAPC) provided a comprehensive set of recommendations and standards for the provision of adequate pediatric palliative care. A number of studies have shown deficits in pediatric palliative care …
Supporting parental caregivers of children living with life-threatening or life-limiting illnesses: A Delphi study
BACKGROUND: The impact of a child s life-limiting or life-threatening illness is significant on parents who experience a great deal of emotional, physical, and spiritual upheaval. Hope has been identified as an important inner resource for parental caregivers.…
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 neonatal com…
Surviving Siblings' Illnesses, Treatments/Health Services over 13 Months after a Sibling's Death
Two million children experience sibling death annually and have problems that require clinical intervention although few receive such help. Effects on surviving siblings' mental health has been well documented, however their physical health has not. This study…
Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes
Background: The design and provision of quality pediatric palliative care should prioritize issues that matter to children and their families for optimal outcomes. Objective: This review aims to identify symptoms, concerns and outcomes that matter to children …
Talking to families when death becomes a likely outcome - a pilot simulation programme to improve end of life conversations during and around PICU admission
End of life conversations form the basis of many complex communication scenarios in paediatric intensive care (PICU). These conversations are often initiated late in the disease process. There is evidence that many clinicians shy away from the subject matter f…
Talking to families when death becomes a likely outcome-a pilot simulation programme to improve end of life conversations during and around PICU admission
Aims & Objectives: End of life conversations form the basis of many complex communication scenarios in paediatric intensive care (PICU). These conversations are sometimes initiated late in the disease process. Anecdotal evidence is that many clinicians shy awa…
Talking to parents about their preferences for their child's place of death: A prospective study
Background Government policy identifies home as the preferred place of death (PPOD) for children and young people (CYP) and suggests a home death as an indicator of the quality of care. A recent systematic review found a lack of compelling evidence for both ho…
Teachers communicating about life-limiting conditions, death and bereavement
The number of children with life-limiting or life-threatening conditions in England is double what it was at the millennium. These conditions include cystic fibrosis, cancer, organ failure and severe neurological injuries. The Teaching for Life project aimed t…