Browse Items (35 total)

As part of the invited supplement on Death and Dying in the PICU, we reviewed ethical, cultural, and social considerations for the bedside healthcare practitioner prior to engaging with children and families in decisions about limiting therapies,…

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: Our grant from the Patient-Centered Outcomes Research Institute (PCORI) focused on the use of nurse home visits postdischarge for primarily pediatric hospital medicine patients. While our team recognized the importance of engaging parents…

OBJECTIVES: To evaluate the feasibility of a new approach to paediatric research whereby we involved children in analysing qualitative data, and to reflect on the involvement process. SETTING: This was a single-centre, qualitative study in the…

OBJECTIVE: The James Lind Alliance (JLA) offers a method for better aligning health and care agenda's with the needs of patients, carers and clinicians by bringing them together in a Priority Setting Partnership (PSP). In this paper, we draw…

OBJECTIVE: To shorten the Patient Engagement In Research Scale (PEIRS) to its most essential items and evaluate its measurement properties for assessing the degree of patients' and family caregivers' meaningful engagement as partners in research…

Respiratory syncytial virus (RSV) causes a substantial disease burden among children, elderly and immunocompromised adults. Recognition of patient involvement in research is gradually increasing. Most research is being carried out without active…

CONTEXT: Public and patient involvement is increasingly becoming an expectation of research funders and policy makers. Not all areas of health research are public-facing. Here, we outline an approach for building the skills and developing the…

BACKGROUND: Participation in research is associated with benefits and burdens for individual research participants. Children living with a chronic illness are considered particularly vulnerable as they are already burdened with symptoms of their…

OBJECTIVE: Parent engagement in perinatal mortality review meetings following stillbirth may benefit parents and improve patient safety. We investigated perinatal mortality review meeting practices, including the extent of parent engagement, based on…

BACKGROUND: Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and…

When healthcare professionals feel constrained from acting in a patient's best interests, moral distress ensues. The resulting negative sequelae of burnout, poor retention rates, and ultimately poor patient care are well recognized across healthcare…

BACKGROUND: Decision making is a highly complex task when providing care for seriously ill children. Physicians, parents, and children face many challenges when identifying and selecting from available treatment options., METHODS: This qualitative…

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…

OBJECTIVE: To compare characteristics of family conferences at the bedside vs. the conference room in the PICU. DESIGN: Single-site, cohort survey study. SETTING: Thirty-three bed academic PICU in an urban setting. PARTICIPANTS: Ten PICU physicians…

Young people with a chronic illness or disability originating in childhood ultimately need transition to adult care. The process of leaving a familiar paediatric service and effectively engaging in appropriate adult health care can be challenging and…

AIMS AND OBJECTIVES: To explore children's, parents' and nurses' views on participation in care in the healthcare setting. BACKGROUND: Children have a right to be consulted and involved in their care. DESIGN: The grounded theory method was used and…

Systematic assessment of the effect of clinical research studies on child and parent participants has been limited. Such assessment could provide an empirical basis for the ethical conduct of research, assisting investigators and institutional review…

OBJECTIVE: To examine physiologic and therapeutic changes following withdrawal of life-sustaining treatment in children. DESIGN: Retrospective chart review. SETTING: University-affiliated tertiary care pediatric hospital. PATIENTS: All patients who…

OBJECTIVES: This study was conducted to determine how the decision-making process to forgo life support differs between southern and northern European pediatric intensive care units. DESIGN: Multiple-center, prospective study. SETTING: Thirty-nine…

Clinical decision making cannot rely on evidence alone. Although significant advances have occurred in the development of high-quality evidence, similar efforts must be made to develop and evaluate tools that can be used at the bedside to…

Predicting survival and disclosing the prediction to patients with advanced disease, particularly cancer, is among the most difficult tasks that physicians face. With the de-emphasis of prognosis in favor of diagnosis and therapeutics in the medical…

Although most clinicians agree that patients should be informed about treatment alternatives, little is known about the way patients perceive probabilistic information about treatment outcomes and how it influences the choices they make. The purpose…

We investigated how variations in the way information is presented to patients influence their choices between alternative therapies. Data were presented summarizing the results of surgery and radiation therapy for lung cancer to 238 ambulatory…

Communication with dying patients and their families requires special skills to assist them in this extremely stressful period. This article begins with a case that illustrates many of the challenges of communicating with the dying. It then reviews…

Draft guidelines address regional variations, but there are worries over terminology, the needs of family members and implementation. The death of a child is a comparatively rare event in the UK. Even so, more than 3,000 infant and 2,000 children and…

BACKGROUND: All hospital trusts in Norway have clinical ethics committees (CEC). Some of them invite next of kin/patients to be present during the discussion of their case. This study looks closer at how parents of seriously ill children have…

Children and young people can have a wide range of life limiting conditions and may sometimes live with such conditions for many years. This guideline recommends that end of life care be managed as a long term process that begins at the time of…
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