Browse Items (74 total)

Children with medical complexity (CMC) have been defined (Cohen et al., Pediatrics 127: 529–538, 2011.) as an emerging population potentially eligible for PPC. The current study investigated the prevalence of children with medical complexities…

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: 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…

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…

BACKGROUND: There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and…

AIM: Following the establishment of paediatric palliative care services over recent decades, this study sought to identify information to inform future policy and practice. METHODS: A rapid review using thematic synthesis was conducted to synthesise…

BACKGROUND: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not…

BACKGROUND: Children with a life-limiting condition often require extensive and complex care, much of which is provided by their parents at home. There is a growing body of research that aims to understand the experiences of these parents, but the…

CONTEXTS: Inadequate pain management in community paediatric palliative care is common. Evidence to inform improved pain management in this population is limited. OBJECTIVES: To explore the barriers and facilitators to paediatric community-based pain…

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…

OBJECTIVES: No randomised controlled trials have been conducted for breakthrough pain in paediatric palliative care and there are currently no standardised outcome measures. The DIPPER study aims to establish the feasibility of conducting a…

Background: Oral morphine is frequently used for breakthrough pain but the oral route is not always available and absorption is slow. Transmucosal diamorphine is administered by buccal, sublingual or intranasal routes, and rapidly absorbed. Aim(s):…

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…

OBJECTIVE: Losing a child is burdensome with potential long-term impact on the parents' well-being and quality of life. The aim was to investigate parental well-being and quality of life 3-5 years after losing a child due to life-limiting diagnoses…

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…

OBJECTIVES: To investigate the views and experiences of general practice of children with life-limiting and life-threatening conditions, and their family members, through secondary analysis of a qualitative serial interview study. Thematic analysis…

INTRODUCTION: The number of patients with complex chronic conditions (CCC) has increased in the last 20 years or so. There is limited data as regards the prevalence of CCC in the paediatric population and its impact on hospital admissions. The main…

AIM: A follow-up conversation with bereaved parents is a relatively well-established intervention in paediatric clinical practice. Yet, the content and value of these conversations remain unclear. This review aims to provide insight into the content…

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…

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…

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…

AIM: Hospital readmissions within 28 days are an important performance measurement of quality and safety of health care. The aims of this study were to examine the rates, trends and characteristics of paediatric intensive care unit admissions, and…

Objective The prevalence of life-limiting conditions in children in Australia is unknown; such data are needed to inform health service planning for paediatric palliative care. The aim of this study was to estimate the prevalence of life-limiting…

BACKGROUND: Health service planning in paediatric palliative care is complex, with the diverse geographical and demographic characteristics adding to the challenge of developing services across different nations. Accurate and reliable data are…

BACKGROUND: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication…

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…

CONTEXT: Public and patient involvement is increasingly becoming an expectation of research funders and policy makers. Not all areas of health research are public-facing. Here, we outline an approach for building the skills and developing the…

Education is integral to the development of children's palliative care (CPC) globally; thus, the International Children's Palliative Care Network (ICPCN) developed a training programme including face-to-face and e-learning programmes to increase…

OBJECTIVE: To evaluate the relationship between body mass index (BMI) and acute injury in adolescents. METHODS: An analysis of cross-sectional data from the Canadian Community Health Survey (CCHS) Cycle 3.1 collected by Statistics Canada in 2005 was…

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:…

OBJECTIVE: Discussing the potential deterioration of a child who has a life-limiting condition has recognised benefits for future care, but can be challenging in a clinical context where uncertain illness trajectories are common. Existing research is…

In medicine, external second opinions are frequently sought to inform decisions around a patient's proposed course of treatment. However, they are also sought in more challenging circumstances such as when disagreement arises between the healthcare…

Objective: To describe levels of perceived shared decision making (SDM), decisional conflict (DC), and decision regret (DR) in prenatal counseling by pregnant women, partners, neonatologists, and obstetricians regarding decision-making around…

CONTEXT: Supporting spiritual needs is a well-established aspect of palliative care, but no data exist regarding how physicians engage with patients and families around spirituality during care conferences in paediatric intensive care units (PICU).…

BACKGROUND:: There is a lack of appropriate, validated person-centred outcome measures (PCOM) for paediatric palliative care in the scientific literature, and as a result there is not a tool to drive and evaluate care of children and young people.…

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…

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…

AIM: To assess clinicians' experience, attitudes and confidence with advance care planning (ACP) at a quaternary paediatric referral centre using a learning-needs survey, and then apply this information to develop and examine the feasibility of…
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