Abstract Background: Missing data is a common phenomenon with survey-based research; patterns of missing data may elucidate why participants decline to answer certain questions. Objective: To describe patterns of missing data in the Pediatric Quality…
The purpose of this study was to evaluate the treatment integrity of Family-Focused Grief Therapy (FFGT), a preventive intervention designed for families at high risk of poor functioning during palliative care and bereavement. From the 81 families…
OBJECTIVE: To describe family perceptions of care at the end of life. METHODS: In a representative sample of older people who died from chronic diseases, family members were interviewed about satisfaction with treatment intensity, decision-making,…
Patients with advanced cancer experience a complex web of problems, all of which interact. Specialist palliative care services have developed to meet these needs, but their effectiveness should be considered. We sought to determine whether specialist…
BACKGROUND: In 2004, a review of pilot studies published in seven major medical journals during 2000-01 recommended that the statistical analysis of such studies should be either mainly descriptive or focus on sample size estimation, while results…
BACKGROUND: The information needs of parents facing end-of-life decisions for their child are complex due to the wide-ranging dimensions within which such significant events unfold. While parents acknowledge that healthcare professionals are their…
OBJECTIVE: Decisions to forgo life support from critically ill children are commonly faced by parents and physicians. Previous research regarding parents' perspectives on the decision-making process has been limited by retrospective methods and the…
The present review analyses the implications of the best interests of the child principle, which is one of the most widely discussed principles of medical ethics and human rights, for paediatric healthcare. As a starting point, it presents the…
OBJECTIVES: To address the lack of synthesis regarding the factors, processes, and outcomes specific to the transition from child-centered to adult-centered health care for people with cerebral palsy (CP) and spina bifida (SB); more specifically, to…
BACKGROUND:
Children suffering from life limiting diseases are frequently cared for by adult palliative care teams due to missing paediatric structures in that field. However it is questionable whether palliative care curricula for physicians…
OBJECTIVE: The goal was to clarify potential mechanisms underlying differences/disparities in pediatric palliative and end-of-life care. METHODS: We systematically searched online databases to identify articles relating to differences/disparities in…
BACKGROUND: Entering the paediatric intensive care unit with a critically ill child is a stressful experience for parents. In addition to fearing for their child's well-being, parents must navigate both a challenging environment and numerous new…
A cross-sectional community sample of 417 children, ages 6 months to 8 years without developmental delays or in developmental programs, was seen. The Functional Independence Measure for Children (WeeFIM) was used to assess independence in self-care,…
Non-invasive prenatal testing (NIPT) allows early, accurate diagnosis of Down syndrome that has resulted in increased terminations. This qualitative study involved in-depth interviews of fathers of children with Down syndrome about their views on the…
BACKGROUND: Planning for care at the end of life (EoL) is an essential component of support and care for families of children with life-limiting conditions. The purpose of this review was to compare documented EoL planning with published children's…
OBJECTIVE: To determine the minimal clinically important difference (MCID) of warfarin therapy for the treatment of nonvalvular atrial fibrillation from the perspective of patients using 2 different elicitation methods. DESIGN: All patients completed…
The purpose of this study was to examine whether appraisals of desirable and undesirable effects of military service mediated the effect of combat stress on posttraumatic stress disorder (PTSD) symptoms in later life in 1,287 male veterans, aged…
BACKGROUND: Child mortality rates during hospitalisation for acute illness and after discharge are unacceptably high in many under-resourced settings. Childhood vulnerability to recurrent illness, and death, is linked to their families' situations…
Voluntariness is a requirement that is frequently voiced in research ethics but is poorly understood. This article seeks to clarify voluntariness and assess its significance in clinical research at the end of life. First, what voluntariness is and…
OBJECTIVE: Donation after cardiac death has been endorsed by professional organizations, including the American Academy of Pediatrics as a means of increasing the supply of transplantable organs. However, ethical concerns have been raised about…
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: End-of-life clinical experiences, particularly in pediatrics, are quite limited for pre-licensure nursing students. Though effective, end-of-life simulations can be costly, require facilitators trained in palliative and end-of-life care,…
The ventilatory effects of single i.v. doses of morphine 0.1 mg kg-1, pethidine 0.67 mg kg-1 and methadone 0.1 mg kg-1 were compared after ophthalmic surgery in an open, randomized study in 30 children aged 3-8 yr. Ventilatory changes after each drug…
OBJECTIVES: The purpose of this study was to evaluate adult congenital heart disease (CHD) training among U.S. cardiology fellowship programs. BACKGROUND: Although training recommendations for caring for adults with CHD exist, the educational…
OBJECTIVE: To document the Institutional Review Board (IRB) review process and to explore the impact of different patient notification procedures. DATA SOURCES/STUDY SETTING: Review of IRB application and correspondence records prospectively…
BACKGROUND: The Veterans Administration is an ideal setting for multisite studies; however, individual VA Institutional Review Board (IRB) approval is necessary. This study examines the burden of multisite IRB approval on a Health Services Research…
BACKGROUND: The purpose of this study was to describe the variables influencing end-of-life care in children and adolescents dying of cancer. MATERIALS AND METHODS: Records of 146 children with cancer who died at Children's Hospital were reviewed for…
This study examined the differences in the prescription and administration of analgesics in eight pediatric specialty units. Medical records of patients (n = 153) who were reported by nurses to be having pain were reviewed. Results showed that there…
OBJECTIVE: We conducted this study to investigate how physicians in a pediatric intensive care unit (ICU) currently make decisions to withdraw and withhold life support. Consultation with the patient's primary caregiver often precedes decisions about…
BACKGROUND: Institutional review boards (IRBs) are given discretion to interpret and apply the federal regulations governing the protection of human subjects in research. OBJECTIVE: To determine the extent of the variability among different IRBs on…
This study was carried out in eight palliative care services in four Canadian cities. A revised version of The McGill Quality of Life Questionnaire (MQOL) is compared to a single-item scale measuring overall quality of life (SIS), and the…
