CONTEXT: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe…
CONTEXT: The death of a child from cancer is a devastating event, placing bereaved parents at risk for both physical and psychosocial morbidities. Despite growing awareness of these outcomes and increased hospital-based support, bereaved parents…
Objectives: * Describe a longitudinal, iterative, and cross-organizational design process. * Describe pediatric palliative care program structure and process measurement. * Create additional opportunities to expand the benchmark data available for…
Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A…
OBJECTIVES: To study the responsiveness (sensitivity to change) of the Motor Function Measure (MFM) in detecting change in neuromuscular disease patients with the intent of using this measure in future clinical trials. DESIGN: Prospective cohort…
PURPOSE: The aim of this study was to examine the medical student knowledge regarding pediatric palliative care (PPC) and determine the predictors of knowledge among them toward PPC. METHODS: A cross-sectional engaging study was directed with 326…
Background In order to improve outcomes for acutely unwell children and young people it is essential to learn from those cases in which children deteriorate and die. In our trust there was no universal record of child deaths or deteriorations and no…
Program Goals: Our program is uniquely positioned in a safety net hospital that serves as a large tertiary referral center for pediatric transplant, trauma and heart failure as well as being an international catchment area for the southern…
Introduction: Being responsive to end-users is essential to good care. Limited in-depth exploration of parental perspectives on care received by children over the course of serious illness has hindered the development of process measures to evaluate…
PURPOSE Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely…
OBJECTIVE: The goal of pediatric palliative care (PPC) is to maintain the quality of life (QoL) of children whose lives are threatened. However, there are sparse scientific data on the domains of QoL in this particular context, and no measurement…
BACKGROUND: Support groups available to parents/carers of children with a disability or developmental delay (DDD) are predominately attended by women. Limited data exists reporting experiences of the few male-only support groups. This paper examines…
Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents'…
BACKGROUND: Neonatal death is often preceded by end-of-life medical decisions. This study aimed to determine whether the context of death - after a decision of withholding or withdrawing life-sustaining treatment (WWLST) or despite maximum care - was…
Objectives. The goals of this study were to define the endpoints of pain research that are important to patients with chronic pain and to identify clinical and demographic variables that are associated with patients' choices of endpoints. Patients &…
Objectives: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the…
BACKGROUND:: There is few literature on the difficulties and different meanings of gastrostomy tubes (GST) for parents of children with palliative needs, and what specific palliative care teams contribute to this process. AIM:: To explore the process…
Background: For children with life-shortening illness, achieving a "good death" can be a tacit goal. There is little understanding of how different stakeholders perceive what a "good death" might be. Objective(s): To review empirical literature to…
BACKGROUND: Discomfort exists discussing goals of care (GOC) with families of children with advanced life-threatening illnesses. There also exists important variability in the management of these patients. OBJECTIVE(S): This study seeks to explore…
Background and Aims: Grief in parents has been described as a very intense long-lasting experience, characterized by deep sadness, and social isolation, therefore, the recommendation of scientific societies in pediatrics is to provide bereavement…
This descriptive qualitative study explored parent experiences related to their infant's neonatal intensive care unit (NICU) hospitalization, end-of-life care, and palliative care consultation. "Life and death in the NICU environment" emerged as the…
Objectives: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the…
Background: Advance care discussions (ACD) between health care professionals (HCPs) and parents of children with a life-limiting disease are a core element to successful pediatric advance care planning (pACP). Yet, they are considered as challenging…
Background: Individuals with cystic fibrosis (CF) face the challenges of managing a chronic, progressive disease. While palliative care is a standard of care in serious illnesses, there are no guidelines for its incorporation into CF care. Patients…
Background: "Primary" palliative care (PC) skills for CF care teams are not clearly defined, but in general for serious illness include managing basic physical and emotional symptoms, and having basic discussions about prognosis, goals, suffering,…
It is known that if one partner wants to talk after the loss of a child, while the other does not, the less satisfied they are with the relationship. The aim of this study was to increase our understanding of parental relationships following the loss…
Canuck Place Children's Hospice in Vancouver, Canada, has been hosting a massage therapy practicum within the hospice since 2011. The practicum is delivered by upper-level massage therapy students who are supervised by a registered massage therapist…
Background: Palliative care (PC) has been shown to improve quality of life, symptom burden, and mood in patients with advanced solid tumors as well as those with hematologic malignancies undergoing hematopoietic stem cell transplantation (HSCT).…
Purpose of study Care for children with cardiac disease often involves difficult decisions and clinical uncertainty. Genomic Sequencing (GS) promises to improve clinical prognostics and could impact how difficult decisions are made. We sought to…
Objectives: * Recognize how PICUs/NICUs implement GBS IPPC recommendations. * Describe how PICUs/NICUs' resource influence their GBS care provision as related to IPPC recommendations. Original Research Background: Grief and bereavement support (GBS)…
OBJECTIVES: The purpose of the current study is to suggest a powerful strategy to overcome the misperceptions of undergraduate nursing students' about paediatric palliative care (PPC), through simulation technique. MATERIALS AND METHODS: A one-group…
OBJECTIVES: Neonatal palliative care (NPC) is an emerging subset of care in United States (US) neonatal intensive care units (NICUs) that provides relief for both infants and families at the end of life for infants with terminal diagnoses. Families…
The purpose of this study was to determine the correlation of perceived stress with selected physiological and psychological factors in an HIV-infected, predominantly African American population and to assess the multivariable effects on perceived…
Introduction: Adolescents with cardiomyopathy, heart failure, and heart transplant (CMHF/HTx) are at risk of life-changing complications and premature death. The importance of advance care planning (ACP) in pediatric patients with HIV and cancer has…
BACKGROUND: There is a dearth of literature that investigates life transitions of young adults (YAs) with life-limiting conditions, families and professionals. The scant literature that is available has methodological limitations, including not…
Objectives: The experiences of medical residents during training in pediatric palliative care has recently become an area of focus within medical education literature. Residents' medical knowledge, skill development, and comfort in clinical practice…
BACKGROUND: Legacy building interventions are used in pediatric healthcare settings to help families cope with difficult healthcare experiences and typically reserved for intentional use at or near the end of a child's life. However, little is known…
End-of-life care is a critical issue for pediatric population with terminal illness to ensure the best possible quality of care for them and their families. A survey was conducted to identify the barriers and facilitators to provide pediatric…
Background: It is difficult to perceive the preparation of a good death for children because of its social and cultural issues. Among the children with serious diseases, they can be alienated and the whole processes are done by the decision of the…
