Browse Items (5968 total)

Children and adolescents with recurrent or chronic pain and headache are a complex and heterogenous population. Patients are best served by multi-specialty, multidisciplinary teams to assess and create tailored, individualized pain treatment and…

In this paper, we explore three separate questions that are relevant to assessing the prudential value of life in infants with severe life-limiting illness. First, what is the value or disvalue of a short life? Is it in the interests of a child to…

Objectives: Define the impact of the coronavirus pandemic on pediatric palliative care team structures, communication, and workflow; and describe the roles, responsibilities, and reflections of interdisciplinary team members. Methods: Cross-sectional…

BACKGROUND: Parents of children with complex medical needs describe an internal, personal definition of "trying to be a good parent" for their loved child. Gaps exist in the current "good parent concept" literature: (1) When the idea of "trying to be…

Background: Music is a powerful therapeutic intervention to promote physical and psychological health, healing, and well-being. In pediatric palliative care, music therapists are often involved in preloss care. Heartbeat recordings (HBRs) synchronize…

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: There is a growing body of qualitative studies examining parents' experiences of caring for a child with a life-limiting condition, coinciding with recent evidence that indicates an increasing incidence of paediatric life-limiting…

BACKGROUND: Comprehensive outcome measurement in pediatric palliative care focusing on the entire unit of care, that is, the affected child and its family, is crucial to depict treatment effects. Despite its increasing relevance, no appropriate…

BACKGROUND: While several studies have examined 'what' families want with regard to the place of a child's end-of-life care and death, few have explored 'how' parents reach a decision. AIMS: (1) to develop a model explaining how parents of a child…

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…

CONTEXT: There is potential value to home-based palliative care for children with serious illness delivered via telemedicine (TM HBPC). Evidence to guide optimal design and delivery of TM HBPC is urgently needed. OBJECTIVES: To explore the existing…

Clinicians fear pediatric advance care planning (pACP) for adolescents is too distressing for families. Multisite longitudinal randomized controlled trial of adolescents with HIV tested the effect of FAmily-CEntered (FACE(®)) pACP intervention on…

Purpose of review: The aim of this study is to assess the most significant Perinatal Palliative Care (PnPC) development projects in the literature and summarize the shared key principles. Recent findings: PnPC is a new concept in neonatal intensive…

Purpose The purpose of this study is to gather qualitative data regarding the experiences and perceptions of speech-language pathologists (SLPs) practicing in pediatric palliative care (PPC) and investigate their approaches for working with patients,…

OBJECTIVES: To provide accessible, uniform, comprehensive, and balanced information to families deciding whether to initiate long-term ventilation (LTV) for their child, we sought to develop and validate a novel informational resource. METHODS: The…

The Boston Children's Hospital Hematology/Oncology Bereavement Program has supported bereaved parents for three decades following the death of their child from cancer or blood disorder. An analysis of the current bereavement program as well as a…

CONTEXT: Improving end-of-life care for children with complex chronic conditions (CCCs) requires parental perspectives. The vulnerability of bereaved parents has historically been a research barrier and studies describing their research participation…

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…

Legacy building interventions like plaster hand molds are offered in most children's hospitals, yet little is known about how the concept of legacy is understood and described by pediatric health care providers. Therefore, this study explored…

Context: There is an ongoing established need to develop engaging pain assessment strategies to provide more effective individualized care to pediatric patients with serious illnesses. This study explores the acceptability of wireless devices as one…

Background: Health care providers (HCPs) require ongoing training and mentorship to fully appreciate the palliative care needs of children. Project ECHO® (Extension for Community Healthcare Outcomes) is a model for delivering…

OBJECTIVES: The objective of this study was to describe in the words of child-rearing parents with incurable cancer, what they had gained or thought about as a result of participating in a five-session, scripted, telephone-delivered…

Background: Recently, awareness of children's decision making has increased in an effort to enhance palliative care. However, the conceptual framework for decision making among children with cancer remains unclear. Aims: We clarified the…

Purpose of reviewThis article reviews the current literature on psychosocial care of children with cancer with particular focus on evidence-based standards of care, including developments in systematic distress screening, utilization of…

The definition of adolescents and young adults (AYAs) in oncology varies with upper limits up to age 39. Younger AYAs, ages 12-24 years, are often cared for within pediatrics. In caring for AYAs with cancer, there are unique considerations that…

Background: Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for children with cancer. Aim(s): To examine the impact of specialist paediatric…

Delivering optimal end-of-life (EOL) care to children and adolescents is a healthcare priority, yet relatively little is known about what patients, families, and healthcare providers (HCPs) consider "best" practices. The objective of this study was…

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…

Purpose: Parents of children that die from cancer are at increased risk of significant long-term psychosocial and physical morbidities. Less, however, is known about the experience of parents early in the grief process. Currently used frameworks and…

Pediatric palliative care aims to alleviate suffering and improve the quality of life of children with serious disease and increase support for their parents and other family members. Integration of palliative care into the routine care of children,…

Background: Adolescents and young adults (AYAs) with cancer receive high-intensity care and experience significant symptoms at the end of life. As novel cancer-directed therapies increase, AYAs with advanced cancer may face multiple treatment…

BACKGROUND: When children are seriously ill, parents rely on communication with their clinicians. However, in previous research, researchers have not defined how this communication should function in pediatric oncology. We aimed to identify these…

INTRODUCTION: Regret about loss is one of the most intense types of regret experienced in life. Little is known about the bereavement regret of parents whose child has died of cancer. Although knowledge about parents' experiences after their child's…

CONTEXT: Approximately 12% of children with cancer will not survive, representing a devastating loss for parents. Strategies to improve parental coping and grief have been understudied. Although legacy-making is frequently offered as standard care to…

BACKGROUND: Healthcare providers' perceptions of palliative care in children with cancer influence care management, specifically that of its early integration. Thus, it is crucial to understand the perspectives of the providers on early integration…

Oral health care is an integral component of interprofessional collaborative care for children and adolescents diagnosed with cancer. The current review highlights the phases of cancer therapy when dental interventions and palliative care are…
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