Browse Items (82 total)

CONTEXT: Parents desire more opportunities for advance care planning (ACP), however, large-scale adoption of ACP for seriously ill children remains unrealized. Little is known about current approaches to ACP and strategies to circumvent existing…

Death from stage 5 chronic kidney disease (CKD 5) in childhood or adolescence is rare, but something that all paediatric renal physicians and most paediatricians will encounter. In this paper, we present the literature on three key areas of…

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…

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:…

Compared with younger children and older adults, adolescent and young adult (AYA) patients with cancer receive more intensive end-of-life (EOL) care. We hypothesize that enhanced understanding of AYA preferences, increased engagement of these…

BACKGROUND AND OBJECTIVES: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We…

AIM: Our study aimed to assess physicians' experiences and education regarding advance care planning (ACP) in paediatrics. We aimed to assess barriers to ACP initiation, including the adequacy of exposure and education regarding ACP and whether…

BACKGROUND:
Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or…

AIMS AND OBJECTIVES: The study aim was to develop a service evaluation tool for an advance care planning model implemented in community palliative care., BACKGROUND: Internationally, advance care planning programmes usually measure success by…

Because predicting and outlining guidance for all possible scenarios is difficult, advance directives are rarely sufficiently precise to dictate patient preferences in specific situations as a disease progresses. Nonetheless, advance care planning is…

OBJECTIVE: This research examined the provision of palliative care for residents with a non-cancer diagnosis including the use of advance directives and advance care planning as part of palliative care policies in residential aged care facilities in…

Advance care planning honors patients' goals and preferences for future care by creating a plan for when illness or injury impedes the ability to think or communicate about health decisions. Fewer than 50% of severely or terminally ill patients have…

BACKGROUND: Advance care planning for children with palliative care needs is an emotionally, legally and complex aspect of care, advocated as beneficial to children, families and health professionals. Evidence suggests healthcare professionals often…

Introduction: Adolescent palliative care is especially challenging because of complex developmental, social, clinical, and legal concerns. In adolescents with life-limiting illnesses, developmental tasks of normal adolescence such as developing an…

BACKGROUND: Children with life-limiting conditions often have complex needs, making it challenging for services to provide satisfactory care. Few studies consider whether services actually meet families' needs by exploring and identifying the…

Purpose of Review: A significant number of pregnancies are complicated by a fetus with a life-limiting diagnosis. As diagnoses are made earlier in the pregnancy, families experience anticipatory grief and are faced with navigating goals of care for a…

BACKGROUND: Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and…

BACKGROUND: Despite advancements in treatment and survival, pediatric organ failure and transplant populations continue to face significant risks of morbidity and mortality. Little scientific attention has been given to addressing the end-of-life…

BACKGROUND AND OBJECTIVE: Small pilot studies support the appropriateness of engaging adolescents with chronic or life-limiting illnesses in pediatric advance care planning (pACP). We do not yet know if pACP is acceptable, feasible, and worthwhile,…

Objectives: For children, adolescents, and young adults with complex chronic conditions advance care planning may be a vital component of optimal care. Advance care planning outcomes research has previously focused on seriously ill adults and…

Background: "Primary" palliative care (PC) skills for CF care teams are not clearly defined, but in general for serious illness include managing basic physical and emotional symptoms, and having basic discussions about prognosis, goals, suffering,…

Context Making end-of-life decisions in neonates involves ethically difficult and distressing dilemmas for healthcare providers. Insight into which factors complicate or facilitate this decision-making process could be a necessary first step in…

PURPOSE: Many seriously ill patients with cancer do not discuss prognosis or advance directives (ADs), which may lead to inappropriate and/or unwanted aggressive care at the end of life. Ten years ago, patients with cancer said they would not like to…

PURPOSE OF REVIEW: To familiarize pediatric anesthesiologists with primary palliative care procedural communication skills and recommendations for discussions involving complex medical decision-making or advance care planning, such as discussions…

Advance care planning enables parents to discuss goals and preferences for future care and treatment of their seriously ill child. Although clinicians report parental factors as common barriers for advance care planning, parental views on reflecting…

AIM: This study described the development, and pilot evaluation, of the Implementing Pediatric Advance Care Planning Toolkit (IMPACT). METHODS: Key elements of paediatric advance care planning (ACP) were defined using a systematic review, a survey of…

PURPOSE: Adolescents and young adults (AYA) with cancer are a cohort requiring specialized healthcare models to address unique cognitive and physical challenges. Advance care planning (ACP) discussions likely warrant age-appropriate adaptation, yet,…

Objectives: *Establish the need for a family caregiver intervention for parents of children with rare diseases.*Introduce the intervention and its components.*Disseminate findings from the piloting of this intervention. In the U.S. a rare disease is…

Introduction: Adolescents with cardiomyopathy, heart failure, and heart transplant (CMHF/HTx) are at risk of life-changing complications and premature death. The importance of advance care planning (ACP) in pediatric patients with HIV and cancer has…

Background: Growing evidence suggests that pediatric palliative care (PPC) teams influence the care received by children and young adults with chronic, life-limiting illnesses. Little is known about how PPC involvement affects advance care planning…

An advance care plan (ACP) is the record of a discussion between an individual (where possible), their professional care givers and those close to them about their future care. When performed well, the process provides all those involved with the…

PURPOSE OF REVIEW: To review the role of pediatric palliative care (PPC) for children with metabolic and neurological diseases. RECENT FINDINGS: There is a growing body of literature in PPC, though it remains limited for children with metabolic and…

Abstract Background: There is increasing recognition of the value of advance care planning for children with life-limiting conditions. It is important that we acknowledge and reflect on the challenges that this work presents in order to optimize…

BACKGROUND: Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning. AIM: The…

Objectives: Research has shown that advance care planning concepts for adults need to be revised and adapted to be applicable to pediatric situations. A consistent approach to pediatric advance care planning (pACP) is still missing. The study aimed…

Background: Our objective was to evaluate children with metabolic diseases in paediatric palliative home care (PPC) and the process of decision-making. This study was conducted as single-centre retrospective cohort study of patients in the care of a…
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