Paediatric palliative care has continued to develop as a philosophy of care and as a practical clinical service to children with life-limiting conditions. More doctors and nurses identify themselves as particularly interested in the subject, and…
Most parents of children with cancer have dual primary goals: a primary cancer-directed goal of cure and a primary comfort-related goal of lessening suffering. Early introduction of palliative care principles and practices into their child's…
OBJECTIVES: To review the concept of fatalism among African Americans by discussing how religiosity/spirituality may guide them in seeking cancer care in a positive rather than a fatalistic way. DATA SOURCES: Nursing, social science, and medical…
Mucopolysaccharidosis IIIC (MPS IIIC, Sanfilippo C syndrome) is a lysosomal storage disorder caused by deficiency of the lysosomal enzyme acetyl-CoA:alpha-glucosaminide N-acetyltransferase (HGSNAT). We performed a clinical study on 29 Dutch MPS IIIC…
The death of a child is a traumatic event that can have long-term effects on the lives of parents. This study examined bereaved parents of deceased children (infancy to age 34) and comparison parents with similar backgrounds (n = 428 per group)…
The purpose of this study was to investigate psychosocial stress in a large sample of cancer patients using an expert rating scale. Specific aims were to analyse the relevance of setting variables (type of clinic, contact initiative, therapy) and…
BACKGROUND: The primary aim of the study was to confirm the increase of plasmatic IR beta-endorphin material during the perioperative period in children. The second was to search for the factors responsible for this increment. METHODS: Seventy-two…
Psychosocial development in children with chronic disease is a key issue in paediatrics. This study investigated whether psychosocial adjustment could be reliably assessed with the 42-item Adolescent Adjustment Profile (AAP) instrument. The study…
BACKGROUND: Palliative care improves care and reduces costs for hospitalized patients with life-limiting illnesses. There have been no multicenter randomized trials examining impact on patient satisfaction, clinical outcomes, and subsequent health…
OVERVIEW: Do-not-resuscitate (DNR) orders allow home care clients to communicate their own wishes over medical treatment decisions, helping to preserve their dignity and autonomy. To date, little is known about DNR orders in palliative home care.…
BACKGROUND: Multicenter research has the potential to recruit participants with diverse racial, ethnic, and geographic backgrounds and is essential for understanding heterogeneity in bereavement. The National Institute of Child Health and Human…
ABSTRACT Background: Studies of end-of-life care have shown that Latino patients want more aggressive care compared to white patients. While this has been attributed to aspects of ethnicity, national origin, and religion, it is possible that limited…
ABSTRACT Introduction: The Pediatric Palliative Care Curriculum (PPCC) was introduced as a pilot study in response to the published need for increased pediatric education in end-of-life (EOL) care. The PPCC was designed to better train residents in…
ABSTRACT Background: Several studies have reported that African Americans are more likely than whites to prefer aggressive treatments at the end of life. Objective: Since the medical information presented to subjects is frequently complex, we…
The purposes of this study were to describe the experiences of pediatric intensive care unit (PICU) staff caring for a child who dies, and to determine whether responses included unprompted indications of moral distress as described in the…
BACKGROUND: The impact of psychosocial research participation has not been examined systematically in palliative care settings. Concerns are often raised regarding the potential for distress among terminally ill patients. This is particularly true…
BACKGROUND: Discussing end-of-life (EOL) issues is difficult with any population. These conversations are even more challenging with adolescents and young adults due to the poignancy of the situation and the need for developmentally appropriate…
The need to standardize the prospective collection and analysis of data has been a cornerstone of education and technical assistance provided by the Center to Advance Palliative Care (CAPC). Data analysis is vital for strategic planning, quality…
OBJECTIVE: To review selected measures of stress and coping in pediatric populations. Stress and coping are presented within a risk and resiliency framework. METHODS: The Society of Pediatric Psychology (SPP) surveyed the membership to identify the…
OBJECTIVE: To examine the chronic illness literature and evaluate the impact on single parenting and children and adolescents with chronic illness. METHODS: We conducted literature reviews of relevant research pertaining to single-parent families on…
