Browse Items (1678 total)

Background: Pediatric patients with advanced cancer and their caregivers have unique psychosocial needs. Anxiety often worsens throughout treatment for both patients and parents, and, if undertreated, can cause suffering. Animal-assisted interaction…

Introduction: Palliative care is a critical component of pediatric oncology care. Embedded pediatric palliative care (PPC) is relatively new in pediatric hematology/oncology (PHO) and may improve access, utilization, and quality of PPC. In June 2020,…

Objectives: This study examined short- and long-term psychological adjustment to parental bereavement in later life for mothers and fathers. Methods: Using 9 waves of data from the United States (1998-2014 Health and Retirement Study), I estimated…

AIM: To systematically review and synthesize findings across qualitative primary studies about fathers' experiences of living with a child with a progressive life-limiting condition without curative treatment options (C3 conditions). DESIGN:…

Abstract Pediatric palliative home care (PPHC) provides care for children, adolescents, and young adults with life-limiting illnesses in their own homes. Home care often requires long travel times for the PPHC team, which is available to the families…

Introduction Nocturnal enuresis is a common yet quality-of-life-limiting paediatric condition. There is an increasing trend for parents to obtain information on the disease's nature and treatment options via the internet. However, the quality of…

Physicians who care for children with life-threatening conditions are uniquely positioned to support families through the dying phase when treatment efforts have failed. Taking on this role for families requires a great deal of time and strategic…

OBJECTIVES: (1) To operationalise our previously published definition of neonatal serious illness by applying it to a patient cohort and (2) to evaluate timing of palliative care consultation, goals of care discussions and meeting serious illness…

Background: Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions. This qualitative…

Background and Aim: The birth prevalence of children with congenital heart disease is about one percent a year. This might mean that a palliative diagnosis maybe directly exists from birth due to the complexity of the congenital heart disease. The…

Objectives Using transmucosal fentanyl as an opioid for rapid acting, needle-free breakthrough relief of symptoms is established within paediatric palliative medicine.1 2 Medication administration via the buccal route is commonly used in paediatric…

Objectives To identify gaps in SPPC provision at a patient and service level at the tertiary centre, local children's hospice and the region, compared to national frameworks and standards. Specialist paediatric palliative care (SPPC) aims to improve…

Objectives Children with life-limiting and life-threatening conditions (LLLTC) have complex needs and are high users of health and social care. Several quality standards exist that highlight the importance of addressing the needs and wishes of…

Objectives To see if a network Palliative Care Study day increases knowledge of participants. Method This was the first paediatric palliative care network study day run in the region. 20 doctors (both consultants and those in training) participated.…

Aims and objectives: To explore culturally and linguistically diverse men's experiences of support after perinatal death, including barriers and facilitators to support and how healthcare providers, systems and policies can best support families.…

Background: Spirituality refers to the dynamic dimension of human life that relates to the way that persons experience meaning, purpose, and transcendence. The complex task of parenting a child with a life-limiting condition may raise existential…

Objectives: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the…

Background/aims: Children with life-limiting and life-threatening conditions are rarely involved in research. Engaging them directly enables them to express the meaning of their condition in their own words. This study aimed to explore the language…

Purpose: To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children's parents. Methods: A qualitative descriptive case study was conducted. Purposeful sampling took…

Context: Loss of a child to a life-limiting condition (LLC) is 1 of the most traumatic life events for parents. Research focusing on fathers' experiences is in its infancy. Objectives: Using a meta-ethnographic approach, we systematically reviewed…

Abstract This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing…

Full text linksCite Abstract Background: Parents of medically complex children hold deeply personal definitions of how to be "good parents" that guide their medical decision making and interactions with providers and are impacted by provider…

Background: Clinicians and parents are expected to make medical treatment decisions in the child's best interests. To reach their decisions, clinicians typically apply a principled approach outlined by Beauchamp and Childress. How parents make…

Objective: Barriers to palliative care for children with serious illness include system constraints and vastly different training and attitudes toward palliative care. This study aimed to explore trainee and faculty physician perceptions of barriers…

OBJECTIVE: This study explored the care experiences of parents whose pregnancy was diagnosed with a fatal fetal anomaly following the legalisation of termination of pregnancy in 2019 in Ireland., METHODS: A qualitative study using in-depth…

Importance: While knowing the goals of care (GOCs) for children receiving pediatric palliative care (PPC) are crucial for guiding the care they receive, how parents prioritize these goals and how their priorities may change over time is not known.…

Background Adolescents with long term conditions are recognised to have unique needs and to experience particular health risks as they transfer to adult services. Some young people with complex neuro-disability may live years following transfer to…

Objectives Pediatric palliative care (PPC), especially among noncancer pediatric patients, faces challenges including late referral, limited patient care, and insufficient data for Asian patients. Methods This retrospective cohort study used the…

Background Children with life-limiting conditions are living longer, so relationships between nurses and families can span decades (Maunder 2013)2. Although long-term relationships between nurses and children/families in paediatric palliative care…

Objective: To pilot feasibility and acceptability of HomeVENT, a systematic approach to family-clinician decision-making about pediatric home ventilation. Methods: Parents and clinicians of children facing home ventilation decisions were enrolled at…

Abstract Purpose: To understand the experience of nurses caring for infants and children with life limiting and life-threatening conditions. Design and methods: A qualitative phenomenological study was conducted, collecting data through deep…
Output Formats

atom, dcmes-xml, json, omeka-xml, rss2