Background: Intensive care doctors have to find the right balance between sharing crucial decisions with families of patients on the one hand and not overburdening them on the other hand. This requires a tailored approach instead of a model based…
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: Families who learn that their unborn baby has a life-limiting fetal condition are often overwhelmed by this news, alongside navigating an unfamiliar healthcare system. A skilled perinatal palliative care coordinator (PPCC) can help these…
CONTEXT: In order to dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the United States and similar practice settings, the field needs to better understand the challenges and…
Objective: Symptom burden of children with cancer appears to contribute to parent distress, but the mechanisms of this relationship are relatively unexplored. The current cross-sectional study examined rumination (i.e., repeated focus on negative…
This study explores the nature of a therapeutic recreation-based bereavement camp for families whose child has died from serious illness. Open-ended surveys and interviews were conducted with parents attending a three-camp cycle over a 12-month…
BACKGROUND: The increased life expectancy of persons with profound intellectual and multiple disabilities (PIMD) raises questions regarding the medical decisions related to life and death, made on their behalf during their later lives. However,…
Objectives: This study aimed to provide a comprehensive overview of cost indicators and outcome measures used to measure financial burden in families of children with life-limiting conditions. Method(s): A scoping review methodology was used to map…
Pediatric palliative care (PPC) is a set of actions aimed at children who suffer from a severe or life-threatening disease to alleviate the symptoms of the disease and improve the quality of life of both the child and his/her family. One of the tools…
BACKGROUND: Despite technological advances and specialist training of neonatal teams, perinatal deaths still occur. Such events are traumatic experiences for the parents and increase the risk of pathological grieving. Nursing is one of the main…
BACKGROUND: Families and professionals caring for children with life-limiting conditions face difficult healthcare decisions. Shared decision-making is promoted in many countries, however little is known about factors influencing these processes.…
Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect…
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…
Background Palliative care for children is an innovative approach that helps improve the quality of life of children suffering from life-limiting illnesses, and their family members. The WHO recognized palliative care as a part of universal health…
BACKGROUND: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for…
Aim: To review the literature relevant to palliative care educational programs for nursing staff and families in the NICU. Background: Few hospitals have a palliative care educational program that is in place despite the increasing need for one.…
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…
PURPOSE Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely…
IMPORTANCE: Lack of pediatric end-of-life care quality indicators and challenges ascertaining family perspectives make staff perceptions valuable. Cardiac intensive care unit (CICU) interdisciplinary staff play an integral role supporting children…
In palliative care, we strive to provide care to the whole patient. When we think about the whole patient, we include the people who are important in our patients' lives. Our New York City-based palliative care team has found that caring for…
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…
BACKGROUND: Spinal muscular atrophy (SMA) is an inherited neuromuscular disorder and a leading genetic cause of infant death worldwide. However, there is no routine screening program for SMA in the UK. Lack of treatments and the inability of…
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…
Grounded theory analysis was used to generate an explanation of the phenomenon of meaning reconstruction in the experience of 10 bereaved mothers. The theory that emerged included three phases in the process of meaning reconstruction: discontinuity,…
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…
Background: Although palliative care (PC) communication skills can be learned through trial and error, pediatric fellows have few opportunities to practice communication, and learning by doing may be harmful for families. Despite these issues and…
Family resistance to withdrawal of life support from children presents difficult issues of clinical practice and of principle. Legal recognition of unilateral physician authority for withdrawal on grounds of clinical "futility"-even in the most…
The phenomenon of post-traumatic growth has been explored within the context of HIV disease in only a limited fashion. One hundred and seventy-six bereaved HIV/AIDS carers located all over Canada responded to a questionnaire about their experiences;…
Abstract
A child with Dravet syndrome shakes family life to the core. Dravet syndrome usually has three phases: (1) up to 1-1½ years: with episodes of febrile status epilepticus but normal development; (2) age 1½ to ~6-10 years: with frequent…
OBJECTIVE: The growing shift toward home care services assumes that "being home is good" and that this is the most desirable option. Although ethical issues in medical decision-making have been examined in numerous contexts, home care decisions for…
Two separate bodies of literature point to the link between family bereavement and cardiovascular health and between sleep quality and cardiovascular outcomes. However, less is known about the joint influence of family bereavement and sleep quality…
Over 200,000 patients are admitted into pediatric intensive care units (PICU) annually in North America, exposing families to extreme psychosocial stressors and adverse outcomes. While previous research has shown PICU patients and their parents…
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: 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…
BACKGROUND: End-of-life and bereavement care is an important consideration in intensive care. This study describes the type of bereavement care provided in intensive care units across Australia and New Zealand. DESIGN: Inductive qualitative content…
