Wish-granting organizations have provided wishes to families of children with serious illnesses for years, yet scant research has examined their benefits. This mixed-method investigation of 682 households explored the benefits of granted wishes to…
BACKGROUND: 8,600 children are eligible for palliative care services each day in the US, yet many pediatric residents and pediatricians do not feel comfortable providing palliative/end of life care. OBJECTIVE: To evaluate the impact of a palliative…
Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and…
PURPOSE: The purpose of this study is to determine the approaches used in withdrawing mechanical ventilator support. MATERIALS AND METHODS: Speakers from the invited faculty of the World Federation of Societies of Intensive and Critical Care Medicine…
Background: Children with severe psychomotor impairment (SPMI) often experience sleep disturbances that severely distress both the child and his or her parents. Validated questionnaires for the assessment of parents' distress related to their child's…
THE MOVE into adult services can leave young people with life-shortening conditions in Scotland facing an uncertain future, as they leave the comfort of children’s services behind.
AIMS AND OBJECTIVES: To draw out the similar complexities faced by staff around truth-telling in a children's and adult population and to interrogate the dilemmas faced by staff when informal carers act to block truth-telling. BACKGROUND: Policy…
Chronic diseases are diseases of long duration and slow progression. Major NCDs (cardiovascular diseases, cancer, chronic respiratory diseases, diabetes, rheumatologic diseases and mental health) represent the predominant health problem of the…
CONTEXT: In clinical practice, some symptoms and problems frequently occur in combination, which may have consequences for symptom management. OBJECTIVES: Facing a growing number of non-cancer patients in palliative care, this study aimed to…
Childhood mortality is a measure of a nation's health. A statistical analysis on suspicious child female deaths was done in two years period from 1st January 2011 to 31st December 2012. It's incidence was (4%) of all autopsied cases. The adolescent…
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…
School nurses are a source of support for teachers who have students with life-threatening conditions, and they provide support to school staff, families, and children. However, little is known regarding the questions they encounter and their desired…
OBJECTIVE:: This position statement from the Canadian Task Force on Adolescents and Young Adults with cancer aims to (1) conceptualize the numerous transition experiences encountered by adolescents and young adults (AYA) with cancer; and (2) provide…
A 3-year-old girl with no particular medical history complained of a stomachache and died on the way to the hospital. The autopsy revealed marked right ventricular hypertrophy and dilation with no other cardiac abnormalities. Microscopically, the…
Cataplexy is a brief episode of bilateral loss of muscle tone with intact consciousness, triggered by a variety of strong emotions such as anger, laugh, humor or surprise and it is considered to represent the physiologic atonia of rapid eye movement…
Secondary analysis using data from a clinical trial was performed to evaluate the stability of individual items of the Mobility and Self-Care functional skills scales of the Pediatric Evaluation of Disability Inventory (PEDI). Parents of 113 children…
Supporting a dying child and family surrounding the child's death is one of the most significant and challenging roles undertaken by health professionals in paediatric end-of-life care. An Australian study of parent and health-professional…
Specificities of situation of individuals with multiple disabilities and pediatric neurological pathologies call for specialized and multi-field competences that are commonly allowed and disallowed in contemporary clinical contexts. However what must…
Specificities of situation of individuals with multiple disabilities and pediatric neurological pathologies call for specialized and multi-field competences that are commonly allowed and disallowed in contemporary clinical contexts. However what must…
Objective: To examine associations of depressive feelings with disease-related variables and explore the moderating effect of social support on depressive feelings in individuals with early rheumatoid arthritis (RA) prospectively over 4 years.…
AIM: In childhood, severe psychomotor impairment (SPMI) is associated with profound sleep disturbances. With the help of newly developed and validated measures, we systematically assessed how much a child's sleep disturbance affects parental sleep…
AIMS: To explore the lived experience of caring and care planning for a child with a life-limiting condition (LLC). METHOD: Using van Manen's conceptualisation of hermeneutic phenomenology, three focus groups were conducted with 21 paediatric…
Abstract Background: Despite parent and physician reports of inadequate skill development, there are few guidelines for training the pediatric care team in sharing life-altering information (SLAI), i.e., "breaking bad news." The necessary skills for…
In the complex patient—doctor relationship, the principle of personal autonomy has gradually acquired more weight against medical paternalism, both in clinical practice and in bioethical thinking. 1 In many countries, this change has been…
Background: Research reporting prevalence rates of self-injurious and aggressive behaviour in people with tuberous sclerosis complex (TSC) is limited. No studies have compared rates of these behaviours in TSC with those in other syndrome groups…
BACKGROUND: Children with acute lymphoblastic leukemia (ALL) undergo multiple lumbar punctures (LPs) during their course of treatment for diagnostic and therapeutic purposes. LP is a stressful and painful procedure, affecting the quality of life of…
According to the World Health Organization, there are over 6.3 million perinatal deaths (PND) a year worldwide. Identifying the factors associated with PND is very helpful in building strategies to improve the care provided to mothers and their…
OBJECTIVE: The purpose of this case-control study was to evaluate risk factors associated with death in children with severe dengue. METHODS: The clinical condition of hospitalized patients with severe dengue who died (cases, n = 18) was compared…
The legal position of the child as a vulnerable individual requires us as a society to treat them with special consideration in regard to the sanctity of life. In UK law, euthanasia is currently illegal, although there are some moves afoot to have…
Rett syndrome (RTT) is a neurodevelopmental disorder primarily affecting females. It is characterized by apparently normative development of motor and communicative abilities followed by deterioration in these domains. Stereotypic hand movements are…
The purpose of this article is to analyze the resilience of the nursing staff in providing care for children and adolescents with chronic diseases, including coping with their deaths. The participants of this qualitative research were nursing…
There’s still a lack of investment in palliative care research, according to a new report from the Institute of Medicine (IOM). The panel notes that from 2006 to 2010, only a fraction
Abstract Background: The majority of young people in need of palliative care live in low- and middle-income countries, where curative treatment is less available. Objective: We systematically reviewed published data describing palliative care…
Although clinicians may value respecting a patient's or surrogate's autonomy in decision-making, it is not always clear how to proceed in clinical practice. The confusion results, in part, from which conception of autonomy is used to guide ethical…
BACKGROUND: Parents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely.…
PURPOSE: The aims of this study are to describe the attitudes and referral practices of pediatric oncologists (POs) to specialized palliative care (SPC), and to compare them with those of adult oncologists (AOs). METHODS: Canadian members of the…
