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 151–175 of 236 publications
Experiencing place identity and place belongingness at a children's hospice: Parents' perspectives
Children's hospices are key players in the provision of palliative care services for families with children with life-limiting conditions (LLCs). However, evidence suggests that some of the negative terminology/language which surrounds the notions of palliativ…
Family experiences with palliative care for children at home: a systematic literature review
BACKGROUND: The main goal of pediatric palliative care (PPC) is to improve or maintain the best possible quality of life (QoL) for the child and their family. PPC can be provided in community health centres, within the specialist health care service and/or in …
Improving communication with parents: the Neonatal Intensive Care Unit Empathy Workshop
OBJECTIVE: To implement an "Empathy Workshop" focused on improving Neonatal Intensive Care Unit (NICU) health care provider communication skills. METHODS: Staff-led, small group "Empathy Workshops" were conducted over a 2 year period. NICU parents answered a s…
Initiating end-of-life decisions with parents of infants receiving neonatal intensive care
OBJECTIVE: To investigate whether parent-initiated or doctor-initiated decisions about limiting life-sustaining treatment (LST) in neonatal care has consequences for how possible courses of action are presented. METHOD: Formal conversations (n = 27) between do…
National Children's Hospitals Bereavement Network standards for supporting families following the death of a child
In England, a child death review process must be undertaken when a child dies, regardless of the cause of death. Scotland and Wales have their own version of the child death review process, while it is the author's understanding that Northern Ireland are still…
Parental Perceptions of Hospital-Based Bereavement Support Following a Child's Death from Cancer: Room for Improvement
CONTEXT: The death of a child from cancer is a devastating event, placing bereaved parents at risk for both physical and psychosocial morbidities. Despite growing awareness of these outcomes and increased hospital-based support, bereaved parents continue to ex…
Parent moral distress in serious pediatric illness: A dimensional analysis
BACKGROUND: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear. OBJECTIVE: The objective of this dimensional analysis was to describe the …
Parent Perspectives During Hospital Readmissions for Children With Medical Complexity: A Qualitative Study
OBJECTIVES: Children with medical complexity (CMC) have high readmission rates, but relatively little is known from the parent perspective regarding care experiences surrounding and factors contributing to readmissions. We aimed to elicit parent perspectives o…
Parents' attitudes towards a difficult situation resulting from the chronic disease of their child
INTRODUCTION AND OBJECTIVE: The family is a reliable and permanent source of support for every human being. It is the key link in the welfare system. The aim of the study is to assess parents' attitudes towards the occurrence of a difficult situation resulting…
Parents' views on what facilitated or complicated their grief after losing a child to cancer
OBJECTIVES: The loss of a child is a devastating event, and bereaved parents often suffer intense and long-lasting grief reactions and are at risk for psychological symptoms. More knowledge about how parents cope with grief may improve the support to bereaved …
Play in Children With Life-Threatening and Life-Limiting Conditions: A Scoping Review
IMPORTANCE: Play is essential to children and provides opportunities to promote their health and well-being. Children living with life-threatening and life-limiting conditions experience deprivation in play. OBJECTIVE: To conduct a scoping review of studies th…
Reflecting on 'Hannah's Choice': Using the Ethics of Care to Justify Child Participation in End of Life Decision-Making
It has been ten years since the case of Hannah Jones-the 12-year-old girl who was permitted to refuse a potentially life-saving heart transplant. In the past decade, there has been some progress within law and policy in respect of children's participatory righ…
Survey of paediatricians caring for children with life-limiting conditions found that they were involved in advance care planning
AIM: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions. METHODS: Paediatrici…
Techniques to Communicate Better With Parents During End-of-Life Scenarios in Neonatology
BACKGROUND AND OBJECTIVES: Clinicians are urged to optimize communication with families, generally without empirical practical recommendations. The objective of this study was to identify core behaviors associated with good communication during and after an un…
The Evolutionary Nature of Parent-Provider Relationships at Child's End of Life With Cancer
Relationship strains between families and providers can have intense repercussions on the bereavement experience. Little is known about how to define and differentiate relationships within various interpersonal contexts and how those families manifest their be…
The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups
BACKGROUND: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. OBJECTIVES: Evaluate the use and feasibility of the Paediatric Carer Support Needs Assessment Tool (…
The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review
BACKGROUND: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches …
Use of subcutaneous fluids in palliative care with children: a case study
Quality of life is a major consideration in children's palliative care, particularly at the end of life. Optimal symptom management is crucial in maintaining quality of life, with the aim being to ensure the child is as comfortable as possible. Ensuring adequa…
Values clarification: Eliciting the values that inform and influence parents' treatment decisions for periviable birth
BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). OBJECTIVE: We piloted values clarification exercises to info…
When a child dies: a systematic review of well-defined parent-focused bereavement interventions and their alignment with grief- and loss theories
BACKGROUND: The availability of interventions for bereaved parents have increased. However, most are practice based. To enhance the implementation of bereavement care for parents, an overview of interventions which are replicable and evidence-based are needed.…
Bereaved Parents' Perceptions of Infant Suffering in the NICU
BACKGROUND: It is challenging to provide supportive intensive care to infants in the NICU, giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe their infant is suffering may alter t…
Bereavement support effectiveness for parents of infants and children: a systematic review
OBJECTIVES: This systematic review aims to assess the effectiveness of bereavement support interventions (BSIs) for parents of an infant or a child who has died from a medical condition or in unforeseen circumstances. METHODS: A systematic search of MEDLINE, P…
Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study
BACKGROUND: The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about relevant out…
End-of-life communication: a nationwide study of bereaved parents' perceptions
OBJECTIVE: To investigate bereaved parents' perception of end-of-life communication with healthcare professionals after losing a child due to life-limiting diagnoses. METHODS: A national register identified the causes of death of 951 children aged 0-18 years d…