THE GAP between children's and adult palliative care services is too wide to negotiate for some young people, according to a study of the experiences of young people with life-limiting conditions and their families.
Les enfants gravement malades, grâce aux progrès biomédicaux, survivent aujourd’hui plus longtemps qu’auparavant. Bien qu’heureuse, cette situation complexifie le quotidien des familles, qui subissent un alourdissement des soins. S’intéres...
Objective:Evaluate changes in end-of-life care following initiation of a palliative care program in a neonatal intensive care unit.Study design:Retrospective study comparing infant deaths before and after implementation of a Palliative Care Program…
OBJECTIVE: End-of-life discussions with patients can be one of the most difficult and stressful tasks for the oncologist. However, little is known about the discussions that healthcare providers have with patients in such situations and the…
OBJECTIVE: The primary endpoints of this study were: (1) to explore the distressing experiences of parents of patients with intractable pediatric cancer in Japan from disclosure of poor prognosis to the present and (2) to explore support they…
OBJECTIVES: Family-Link is a videoconferencing program that allows hospitalized children and their parents to virtually visit family members and friends using laptops, webcams, and a secure Wi-Fi connection. We evaluated the association of…
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…
Background Although even randomization (that is, approximately 1:1 randomization ratio in study arms) provides the greatest statistical power, designed uneven randomization (DUR), (for example, 1:2 or 1:3) is used to increase participation rates.…
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…
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…
Purpose This study aimed to determine whether feeding back patient-reported outcomes (PROs) to providers and families of children with advanced cancer improves symptom distress and health-related quality of life (HRQoL). Patients and Methods This…
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…
BACKGROUND AND OBJECTIVES: Pediatric bioethics presumes that decisions should be taken in the child's best interest. If it's ambiguous whether a decision is in the child's interest, we defer to parents. Should parents be permitted to consider their…
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…
OBJECTIVE: This study aimed to identify and prioritise neonatal intensive care nursing research topics across Europe using an e-Delphi technique. DESIGN: An e-Delphi technique with three questionnaire rounds was performed. Qualitative responses of…
BACKGROUND: A growing body of research indicates that physicians suffer high levels of stress, depression and burnout. Related literature has found that physician stress can negatively impact patient care. This study builds upon previous research…
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…
Research has demonstrated the significant symptom burden present at the end of life of terminally ill children. Medicine has always viewed the relief of pain and suffering as a fundamental human right and a moral and ethical obligation. At the end of…
In this article, the American Cancer Society provides estimates of the number of new cancer cases and deaths for children and adolescents in the United States and summarizes the most recent and comprehensive data on cancer incidence, mortality, and…
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…
OBJECTIVE: The role of coping in chronic pain management is well established. One challenge to the coping approach, however, is in identifying forms of coping that reliably lead to better functioning. An emerging approach to coping is based on the…
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…
Since 2005, forgoing live-support (FLS) is allowed by the French law (known as the Leonetti law) for end-of-life patients only. This study aims at describing the variations over time in the use of the following methods to end life: FLS, brain death…
CONTEXT: Approximately 25% of children diagnosed with cancer eventually die. Losing a child puts parents at increased risk for developing psychological problems. OBJECTIVES: To explore parents' perceptions of the interaction with health care…
Introduction Health professionals in neonatal intensive care units (NICUs) are regularly confronted with an infant’s imminent death. The death of a child is unnatural to parents and intensely affects them. Providing end-of-life care and follow-up…
BACKGROUND: The management of children with cancer during the end-of-life (EOL) period is often difficult and requires skilled medical professionals. Patients with tumors of the central nervous system (CNS) with relapse or disease progression might…
BACKGROUND: Children with cancer, parents, and clinicians, face difficult decisions when cure is no longer possible. Little is known about decision-making processes, how agreement is reached, or perspectives of different actors. Professionals voice…
The aim of this study was to investigate the effectiveness of animal-assisted intervention as distraction for reducing children's pain and distress before, during, and after standard blood collection procedure. Fifty children (ages 4-11 years)…
BACKGROUND:: This is the first study to use meta-analysis as a scientific technique to provide an integrated analysis of the effectiveness of music intervention in cancer patients. OBJECTIVES:: The purpose of this study was, using the meta-analysis…
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…
Background Research shows that palliative care for children requires special attention and a coordinated approach to support the child and its entire family. In June 2012 a project was started in the Women’s and Children’s Clinic, Academic Medical…
BACKGROUND: Dentists recommend over-the-counter medications for postoperative pain in children, and parents often make dosing errors when administering these medications. The authors compared the dosing accuracy when parents used various measuring…
BACKGROUND: Data on deaths in the general wards of our hospital in 2007 revealed infrequent discussions on end-of-life care and excessive burdensome interventions., AIM: A physician order form to withhold inappropriate life-sustaining interventions…
Introduction: Obstructive Sleep Apnea (OSA) is a common medical problem in adults that is becoming increasingly recognized in children. It occurs in the pediatric age group, from newborns to teens. More recently, many specialists have estimated OSA…
