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 3976–4000 of 4332 publications
Fifteen-minute consultation: supporting bereaved parents at the time of a child's death
If you are facing a discussion with parents whose child has died, your humanity is as important as your clinical knowledge and skill. Nothing you can say will ever take away the emotional pain they are facing but your involvement on a very human level will mak…
Finding their voice: Advance care planning for children and young adults without decision-making capacity
Objectives * Explore their own personal struggles and be able to list five barriers frequently cited when considering advance care planning (ACP) for children with complex chronic conditions who cannot communicate their wishes. * Apply newly acquired concepts …
[From one passing to another, analogies between birth and death]
There are disturbing analogies between the beginning and the end of the life of a child. The hypothesis of a similarity between the birth and the dying process of the child gives rise to discussion around the support provided in the context of paediatric palli…
"Have no regrets:" Parents' experiences and developmental tasks in pregnancy with a lethal fetal diagnosis
SIGNIFICANCE: Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological and developm…
Health and quality of life among the caregivers of children with disabilities: A review of literature
Families caring for children with disabilities face particular challenges and demands compared to those caring for children without disabilities. Evidence suggests that there is considerable variation in how caregivers of children with disabilities adapt to th…
Healthcare staff 's experience in providing end-of-life care to children: A mixed-method review
BACKGROUND: Staff who provide end-of-life care to children not only have to deal with their own sense of loss but also that of bereaved families. There is a dearth of knowledge on how they cope with these challenges. AIM: The aim of this review is to explore t…
Health-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use
Background: The number of children worldwide requiring palliative care services is increasing due to advances in medical care and technology. The use of outcome measures is important to improve the quality and effectiveness of care. Aim: To systematically iden…
Helping Families Cope with the Severe Stress of Dravet Syndrome
A child with Dravet syndrome shakes family life to the core. Dravet syndrome usually has three phases: (1) up to 1-1(1/2) years: with episodes of febrile status epilepticus but normal development; (2) age 1(1/2) to ~6-10 years: with frequent seizures of varyin…
Helping parents live with the hole in their heart: The role of health care providers and institutions in the bereaved parents' grief journeys
BACKGROUND: Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with patients …
"His ears are so soft!" Animal-assisted interventions in oncology settings: Implications for oncology social work practice
Content: The use of recreational, expressive, and integrative methods of providing supportive care to patients and families coping with cancer is growing in cancer treatment settings. One such method is animal-assisted interventions (AAI). From the clinic to t…
Home-based palliative care for children with recurrent and/or refractory central nervous system tumour
Background/Objectives: In response to the unprecedented increase in the elderly population demographic, the Japanese government tries to improve transitions from hospital to home health care mainly to reduce medical expenses. There are increasing number of the…
Home care for children with multiple complex chronic conditions at the end of life: The choice of hospice versus home health
Families desire to bring their children home at end of life, and this creates a variety of unique care needs at home. This study analyzed the child and family factors associated with hospice versus home health care use in the last year of life among children w…
"Hope for the best, prepare for the worst": A qualitative interview study on parents' needs and fears in pediatric advance care planning
BACKGROUND: Pediatric advance care planning is advocated by healthcare providers because it may increase the chance that patient and/or parent wishes are respected and thus improve end-of-life care. However, since end-of-life decisions for children are particu…
HOSPITALIZATION OUTCOMES IN CHILDREN WITH END OF-LIFE CARE MEASURES
Learning Objectives: Care at end of life in adults is known to account for a large proportion of health care resources. Current national estimates of outcomes in hospitalized children with end of life care are unknown. Using a large nationwide sample, we sough…
Household income determines access to specialized pediatric chronic pain treatment in Germany
BACKGROUND: Families with lower socioeconomic status (SES) often face problems with gaining access to health care services. Information is scarce on the relationship between SES and health care delivery for children suffering from chronic pain. METHODS: Famili…
How do we reconcile our human responsibilities and our need to grieve with those of working in a professional role: An audit of practice?
Aims The decision about whether or not to attend the funeral of a patient is one that many professionals have to make and yet little attention is given to the moral, emotional and ethical dilemmas associated with attendance, both in practice and in the researc…
How many children and young people with life-limiting conditions are clinically unstable? A national data linkage study
OBJECTIVE: To determine the clinical stage (stable, unstable, deteriorating or dying) for children and young people (CYP) aged 0-25 years in Scotland with life-limiting conditions (LLCs). DESIGN: National cohort of CYP with LLCs using linked routinely collecte…
How parents and physicians experience end-of-life decision-making for children with profound intellectual and multiple disabilities
BACKGROUND: End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions. AIMS: The objective of this research was to inv…
Identifying indicators of quality pediatric palliative care: A systematic review
Pediatric palliative care (PPC) is a relatively new but rapidly expanding specialty area with a variety of models of care provision. Identification and validation of quality indicators specific to PPC is essential to accurately monitor and assess the quality o…
Identifying the Deliberate Prevention and Intervention Strategies of Pediatric Palliative Care Teams Supporting Providers during Times of Staff Distress
BACKGROUND: Pediatric palliative care focuses on caring for children who are seriously ill and their families. These children are often attended to by many other providers who face various challenges as they support these families. Issues involving staff distr…
'I have to live with the decisions I make': laying a foundation for decision making for children with life-limiting conditions and life-threatening illnesses
The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations. In this article we …
Impact of a pediatric palliative care team on limitations of care for inpatients at a free-standing, tertiary-care children's hospital
Objectives * Understand the role of pediatric palliative care in end-of-life discussions. * Identify further opportunities for do-not-resuscitate (DNR) research and analysis of advanced care planning in pediatrics. Original Research Background. Discussions sur…