BACKGROUND: Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects…
This study reports development of a scale assessing communication with family about brain-dead organ donation. Two cross-sectional studies demonstrated scale validity. Tests of internal, external, and predictive validity were conducted using…
Objective To develop a measure of parent adjustment related to caring for a child with achronic illness and to evaluate the reliability and validity of the measure with a group of parentsof children with brain tumors. Methods One-hundred forty-nine…
Children's palliative care (CPC) is gaining attention worldwide, facilitated by the exchange of knowledge during regular specialised congresses. This article describes the developments in the Netherlands over the past 15 years. The Foundation for…
Three hundred cases of tuberous sclerosis were surveyed by postal questionnaire, including 240 cases with learning difficulties. People who have tuberous sclerosis and severe learning disabilities also have a higher frequency of epileptic seizures…
The results of a survey given to parents with Sanfilippo syndrome (MPS III) children (n = 30) are described with an emphasis in several areas. Developmental and degenerative patterns are outlined in detail and contrasted with developmental milestones…
BACKGROUND: The communication relationship between parents of children or young people with health conditions and health professionals is an important part of treatment, but it is unclear how far the use of digital clinical communication tools may…
Bereaved families that collectively make meaning of their grief experiences often function better than those that do not, yet most social work bereavement interventions target individuals rather than family units. In this article, authors describe an…
OBJECTIVES: To describe practical considerations related to discussions about death or possible death of a critically ill child. DATA SOURCES: Personal experience and reflection. Published English language literature. STUDY SELECTION: Selected…
The objective of this study was to provide a preliminary description of trajectories of life-limiting conditions (LLCs) using qualitative experiential data. Semi-structured interviews were conducted with families of children with LLCs, selected to…
To determine whether hospital-based palliative care teams improve the process or outcomes of care for patients and families at the end of life, a systematic literature review was performed employing a qualitative meta-synthesis and quantitative…
Palliative care is the interdisciplinary specialty that aims to relieve suffering and improve the quality of care for patients with serious illness and their families. Although palliative care programs are becoming increasingly prevalent in U.S.…
This study reports the effects of sibling death on 33 adolescents from white, middle- to upper-middle income families. Contact was made through mutual support groups for bereaved parents. A focused interview was used to gather data on bereavement…
Context Despite national requirements mandating collaboration between palliative care specialists and mechanical circulatory support (MCS) teams at institutions that place destination therapy ventricular assist devices, little is known about the…
Objectives: To identify barriers to delivering patient and family centred end of life care to children with neurodegenerative disease, of which seizures and myoclonic epilepsy is a significant symptom. To highlight good practice in delivery of end of…
When medicine proves to be powerless to cure a child suffering from cancer, there remains the path of accompaniment by what we call palliative care. This is very different from the treatments that have been administered up to now - since they are not…
The death of a child may have a profound impact on parents, family members, and health care providers who provided care for the child. Unique challenges are faced by parents of seriously ill children as they must serve as the legal authority for…
A significant proportion of children requiring palliative care have neurodegenerative life-threatening illnesses (NLTIs). While most of their care is provided at home by their families over many years, there is a paucity of research examining…
Introduction: The experience of bereavement is associated with severe physical, psychological, social and spiritual reactions in the parents of children with cancer. Because of that, the families of these children need to receive bereavement…
Background The origins of the word condolence stem from Latin roots: com ‘together,” and dolere, “to grieve”. Parents grieving the death of their child benefit from condoling words and actions of those around them. Grieving the death of a child…
OBJECTIVES: Neonatal palliative care (NPC) is an emerging subset of care in United States (US) neonatal intensive care units (NICUs) that provides relief for both infants and families at the end of life for infants with terminal diagnoses. Families…
Background: The benefits of early integration of palliative care (PC) in oncology have been well established yet, there remain significant barriers to PC integration, especially in the setting of pediatric hematopoietic stem cell transplant (HSCT).…
OBJECTIVE:
Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.
INTERVENTION:
MyQuality is an online tool that enables families to choose…
Participant recruitment is one of the most significant challenges in research on intellectual disability (ID). One potential solution is to develop a participant contact registry, which allows the researcher to contact participants directly rather…
BACKGROUND AND OBJECTIVE: Children with inherited metabolic diseases often require complex and highly specialized care. Patient and family-centered care can improve health outcomes that are important to families. This study aimed to examine…
BACKGROUND: The main goal of pediatric palliative care (PPC) is to improve or maintain the best possible quality of life (QoL) for the child and their family. PPC can be provided in community health centres, within the specialist health care service…
BACKGROUND: Paediatric palliative care provides supportive care to children with life-threatening or life-limiting illnesses throughout the disease trajectory. Up to 42% of children receiving palliative care in Canada will die within a freestanding…
