Objective: To inform clinical practice by describing a model of perinatal palliative care delivery within a fully staffed fetal health center (FHC) inside a freestanding children's hospital. Study design: The team conducted a retrospective chart…
BACKGROUND: Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. METHOD:…
BACKGROUND: Around the world, different models of paediatric palliative care have responded to the unique needs of children with life shortening conditions. However, research confirming their utility and impact is still lacking. This study compared…
Objectives To review literature relating to evidence, context and facilitation to describe knowledge translation in paediatric palliative care. Paediatric palliative care requires competences including both paediatric specialists as well as services…
OBJECTIVES: Paediatric patients with leukaemia with relapse or induction failure have poor prognosis. Anticipated quality of life (QoL) is important in treatment decision making. The objective was to determine if curative intent at relapse or…
BACKGROUND: Assessing pain in infants, children and young people with life-limiting conditions remains a challenge due to diverse patient conditions, types of pain and often a reduced ability or inability of patients to communicate verbally. AIM: To…
OBJECTIVES: Parents have unique experience of caring for their child with a life-limiting illness and significant insight into the experience of advance care planning. However, little is known about how they experience and manage this process. Our…
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…
Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements,…
OBJECTIVE: To systematically review and synthesise qualitative research exploring parents/carers' experiences of seeking online information and support for long-term physical childhood conditions. DESIGN: Systematic review and thematic synthesis of…
BACKGROUND: Having a child with a life-limiting illness is a situation that is relatively rare and represents a multidimensional burden on the family. Paediatric palliative care (PPC) aims to maintain the quality of life for the ill child and the…
BACKGROUND: Electronic medical records (EMRs) offer a promising approach to mapping and documenting the complex information gathered in paediatric palliative care (PPC). However, if they are not well developed, poorly implemented EMRs have unintended…
OBJECTIVES: Identifying the preferred place of death for children/young people with cancer and determining whether this is achieved is pertinent to inform palliative care service provision. The aims of this retrospective case series review were to…
OBJECTIVES: Numbers are rising of chronically and critically ill, technology-dependent children, who are admitted to paediatric intensive care units (PICUs). An integrated model of care (IMOC), that combines paediatric critical care and primary…
INTRODUCTION: Siblings share a lifelong bond in their relationship, and they may choose to provide support to their brother or sister with a neurodisability. Previous reviews summarised programmes that only focused on the behavioural, emotional and…
INTRODUCTION: Transition from paediatric to adult care is a complex process, which poses significant challenges for adolescents with chronic physical and mental illnesses. For many, transfer to adult care is associated with poor health and…
Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to…
Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to…
Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to…
BACKGROUND: Children with life-limiting conditions have a high risk of colonisation with a multidrug-resistant organism (MDRO). To avoid the spread of hospital-aquired infections to other patients, children with a MDRO are moved to an isolated room…
OBJECTIVES: Typically pediatric end-of-life decision-making studies have examined the decision-making process, factors, and doctors' and parents' roles. Less attention has focussed on what happens after an end-of-life decision is made; that is,…
BACKGROUND: A multidisciplinary outpatient clinic at a tertiary care children's hospital supported and staffed by a children's hospice was created to enhance and expand the inpatient palliative care services available to families of children with…
BACKGROUND: Paediatric life-limiting and life-threatening conditions (life-limiting conditions) place significant strain on children, families and health systems. Given high service use among this population, it is essential that care addresses their…
Complex paediatric health conditions are increasingly associated with survival into adulthood resulting in more youth with complex care needs (CCN) transitioning from paediatric to adult healthcare. Current transition practices, when present, are…
The centralization of paediatric critical care services in most developed countries has seen an increase in the need for critically unwell and traumatically injured children to be transported for definitive care. This, in combination with the rising…
AIM: To examine paediatric deaths following withdrawal or withholding of medical treatment (WWMT) from a hospital-wide perspective and identify changes over a 10 year period. METHODS: A retrospective review of medical records was conducted for all…
INTRODUCTION: Benefits of integrated care include improved health outcomes and more satisfaction with experiences of care for consumers. For children and young people with chronic and complex health conditions, their care may be fragmented due to the…
BACKGROUND: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely…
BACKGROUND: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely…
AIM: To investigate the main factors which facilitate or hinder end-of-life decision-making (EoLDM) in neonates and children. METHODS: A qualitative inductive, thematic analysis was performed of interviews with a total of 73 parents and 71…
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…
