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 2201–2225 of 4332 publications
Palliative Care in High and Low Resource Countries
Palliative Care (PC) is defined by the World Health Organization (WHO) as a support given by multiple disciplines in order to improve the quality of life of both patients and their caregivers, throughout the disease course, from diagnosis to end-of-life. PC ai…
Palliative Care in Pediatric Pulmonology
Children with End Stage Lung Disease (ESLD) are part of the growing population of individuals with life-limiting conditions of childhood. These patients present with a diverse set of pulmonary, cardiovascular, neuromuscular, and developmental conditions. This …
Palliative care is not associated with decreased intensity of care: Results of a chart review from a large children's hospital
BACKGROUND: Palliative care is an important component of pediatric oncology care, especially for children who will not be cured of their disease. However, barriers remain to integration of this service. One barrier is the perception that it indicates "giving u…
Palliative Care Training for Pediatric Hematology/Oncology Fellows: a Canadian Perspective
Children with cancer experience suffering, particularly at the end of life. Pediatric hematology/oncology (PHO) fellows need dedicated palliative care (PC) training in order to adequately manage this suffering. Our objectives were to understand (1) the PC trai…
Parental bereavement - impact of death of neonates and children under 12 years on personhood of parents: a systematic scoping review
BACKGROUND: Losing a child tragically impacts the well-being and functioning of parents. With these effects extending beyond emotional, physical morbidity and compromising self-perceptions, appropriate, longitudinal, timely and personalised support is key to e…
Parental Decision-Making for Children With Medical Complexity: An Integrated Literature Review
CONTEXT: Children with medical complexity (CMC) have multiple significant chronic health conditions that result in functional limitations and high health care utilization. The population of CMC is increasing and parent decision-making for this population is nu…
Parental experience of child death in the paediatric intensive care unit: A scoping review
Objective The purpose of this scoping review was to identify the experiences of parents who endured the death of their child in the paediatric intensive care unit (PICU) and what end-of-life care they perceived as supportive. Design Scoping review using the Pr…
Parental Posttraumatic Growth After Pediatric Hematopoietic Stem Cell Transplant
Little is known about the development of posttraumatic growth among parents of children with serious advanced disease. The purpose of this study is to describe parental posttraumatic growth 100 days after pediatric stem cell transplant. This is a cross-section…
Parental views on communication between children and clinicians in pediatric oncology: a qualitative study
Communication is essential to providing family-centered care in pediatric oncology. Previously, we developed a functional model of communication between parents and clinicians. Prior research has not examined the domains and purposes of communication between c…
Parent and Adolescent Perspectives on the Impact of COVID on the Care of Seriously Ill Children
Context
: Few studies have explored the impact of the Coronavirus Pandemic (COVID-19) on the care of seriously ill children which may be especially affected due to the child's vulnerability, complexity of care, and high reliance on hospital-based care.
Object…
Parent and Well-Sibling Communication in Families With a Child Who Has a Life-Limiting Condition: Quantitative Survey Data
OBJECTIVE: Living with a child with a life-limiting condition (LLC), for which there is no hope of cure and premature death is expected, places much stress on a family unit. Familial communication has the potential to serve as a buffer when children are faced …
Parent engagement in perinatal mortality reviews: an online survey of clinicians from six high-income countries
OBJECTIVE: Parent engagement in perinatal mortality review meetings following stillbirth may benefit parents and improve patient safety. We investigated perinatal mortality review meeting practices, including the extent of parent engagement, based on self-repo…
Parenting Surviving Children After the Death of a Child from Cancer: An Interpretative Phenomenological Analysis
The death of a child is a tragic, devastating event with enormous emotional and relational impact on the family unit. Parental changes are significant, encompassing the psychological, physical, spiritual, and interpersonal realms. Little bereavement research h…
Parent-led strategies supporting personal well-being when caring for a child with a life-limiting condition: A scoping review
The objectives of this review were to identify strategies initiated by parents of children with life-limiting conditions to support their own well-being at home and to describe the impact of these strategies on parental well-being. A systematic scoping review …
Parent Perceptions of Infant Symptoms and Suffering and Associations With Distress Among Bereaved Parents in the NICU
CONTEXT: Healthcare providers and parents face many challenges caring for infants at the end of life (EOL). Symptom assessment and management in critically ill infants can be especially difficult. However, the impact of the infant's EOL experience on bereaved …
Parents’ advice to other parents of children with spinal muscular atrophy: Two nationwide follow-ups
Being a parent of a child with spinal muscular atrophy (SMA), a disease that causes progressive muscle weakness, involves a range of challenges. The purpose of this study was to explore what advice parents of children with severe SMA, in absence of effective t…
Parents Are the Experts: A Qualitative Study of the Experiences of Parents of Children with Severe Neurological Impairment During Decision-Making
CONTEXT: Parents of children with severe neurologic impairment (SNI) often face high-stakes medical decisions when their child is hospitalized. These decisions involve technology/surgery, goals of care/advance care planning, or transitions of care. OBJECTIVE: …
Parents as Advocates for Pediatric Palliative Care
Caring for a child with a serious or life-limiting illness presents many challenges for families and health care providers. Through that experience (and, many times, as it ends), parents are compelled to find and make meaning from their ultimate loss and the m…
Parents’ experiences during and after their child’s stay in the paediatric intensive care unit – A qualitative interview study
Background
Having a child admitted to the paediatric intensive care unit (PICU) is often an emotional and stressful experience for parents.
Aim
The aim of the study was to explore parents’ experiences during and after their child’s hospitalization in the PICU …
Parents' experiences of care offered after stillbirth: An international online survey of high and middle-income countries
BACKGROUND: Stillbirth, the death of a baby before birth, is associated with significant psychological and social consequences that can be mitigated by respectful and supportive bereavement care. The absence of high-level evidence to support the broad scope of…
Parents' experiences of initiation of paediatric advance care planning discussions: a qualitative study
Advance care planning enables parents to discuss their goal and wishes for the future treatment and care of their life-limited or life-threatened child. Whilst research has identified the barriers clinicians face to initiate such discussions, the views of the …
Parent's Lived Experience of Memory Making With Their Child at or Near End of Life
BACKGROUND: Memory making is the process of creating mementos of a child with a life limiting condition, who may be at or near end of life, providing a tangible and visual connection to the child who has died. AIM: This study explored the lived experience a me…
Parents living with a child afflicted by a life-limiting medical condition: Typology of their narrative identity
Parents of children suffering from a life-limiting medical condition struggle with difficult existential questions. Our objective was to understand why those parents’ interactions with the medical world were so different, ranging from hostile to collaborative,…
Parents' perspectives on conflict in paediatric healthcare: A scoping review
Background: Conflict in paediatric healthcare is becoming increasingly prevalent, in particular relation to paediatric end of life. This is damaging to patients, families, professionals and healthcare resources. Current research has begun to explore perspectiv…
Parent values and preferences underpinning treatment decision making in poor prognosis childhood cancer: A scoping review protocol
Introduction Parents of a child with cancer want to be involved in making treatment decisions for their child. Underpinning and informing these decisions are parents' individual values and preferences. Parents of a child who has a poor prognosis cancer and who…