BACKGROUND: Residents often feel unprepared to care for dying patients and may benefit from more training. Little is known about factors in the clinical setting that promote resident learning about end of life (EOL) care. OBJECTIVE(S): This…
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…
OBJECTIVES: A key aim of palliative care is to improve the quality-of-life of people with a life-threatening illness. Occupational therapists are well positioned to contribute to this aim due to their broad range of interventions, client-centeredness…
CONTEXT: Specialized pediatric palliative home care (SPPHC) is the main pediatric palliative care structure in Germany. Detailed data on patient characteristics and care are sparse. Describing this population in terms of diagnoses and care needs is…
Only a few acute hospital inpatient units dedicated to pediatric palliative care (PPC) patients exist today. Clinical data on the patients and care provided at specialized acute PPC inpatient units (PPCUs) are scarce. This study aims at describing…
OBJECTIVE: To assess how physicians and families understand quality of life (QOL) for NICU patients, and to explore the feasibility of developing a standardized definition for QOL. STUDY DESIGN: Surveys were developed and administered to…
What are social work's unique roles and functions in behalf of patients and their families in hospice care? The question is answered in the first phase of a Joint Research Project of social work faculty, hospice social workers and graduate social…
Objectives: Children with Progressive Life Shortening Illnesses (PLSIs) are children whose lives are shrouded with uncertainty as they live with conditions for which cure, and of ten even effective treatments, is not available. Nevertheless, the…
BACKGROUND:
This study explored psychological adjustment and sibling relationships of siblings of children with life-limiting conditions (LLCs), expanding on previous research by defining LLCs using a systematic classification of these…
OBJECTIVE: To explore bereaved parents' judgements of healthcare providers, as part of a larger study examining their perceptions of the death of a child in the paediatric intensive care unit. RESEARCH METHODOLOGY: Constructivist grounded theory.…
Objectives
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Define a collaborative model between pediatric palliative care teams and child psychiatry.
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Demonstrate knowledge of psychotropic medication use in children with advanced illness.
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Recognize when the involvement of child psychiatry is…
In Europe, Portugal has been identified as the country with the most rapid evolution of paediatric palliative care provision, which is a highly complex experience for families. The present descriptive-exploratory study seeks to contribute to the…
Physicians who care for children with life-threatening conditions are uniquely positioned to support families through the dying phase when treatment efforts have failed. Taking on this role for families requires a great deal of time and strategic…
This article describes one nurse's experience resulting from her interest in the value of giving bereavement photographs to parents who experience a perinatal loss. Three families were interviewed about the meaning of those photographs. The parents…
In this retrospective study, a sample of 233 parents were surveyed, by means of a postal questionnaire, about their experience of a specialised paediatric retrieval service (median time interval after child's retrieval=10 months). Although all…
Background: To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs. Objective(s): The goal of this project was to identify and…
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…
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…
Purpose: Pediatric palliative care focuses mainly on the children suffering from a life-limiting disease, but always includes parents and siblings. However, grandparents are also often highly involved in caring for the child and require additional…
BACKGROUND: Guidelines recommend shared decision making (SDM) between neonatologists and parents when a decision has to be made about the continuation of life-sustaining treatment (LST). In a previous study, we found that neonatologists and parents…
Objectives: * Describe the evidence from a growing body of literature demonstrating the dearth of pediatric-focused training and resources for community hospice nurses, as well as the lack of comfort of community hospice nurses with providing…
Within Western cultural traditions, the idea that parents should talk about the death of their child with each other is deeply rooted. However, across bereaved parent couples there are wide variations in communication about their grief with each…
PURPOSE: We report on an in-depth interview and participant observation study that uses data from multiple sources to determine how the involvement of teenagers with leukaemia is understood and enacted in healthcare. In this article, we investigate…
Despite a great deal of effort and many articles addressing the end-of-life care of children and adults in intensive care units,1 2 paediatricians continue to be confronted by parents wanting “everything done”. Such an appeal is often construed by…
Background: Last Aid Courses (LAC) for adults have been established in 21 countries in Europe, Australia and America to improve the public discussion about death and dying and to empower people to participate in end-of-life care provision. In 2018,…
BACKGROUND: There is a lack of knowledge regarding siblings' experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings' perspectives are often expressed through their parents and not by siblings…
Background: Families who must decide about pediatric home ventilation rely on the clinicians who counsel them for guidance. Most studies about pediatric home ventilation decisions focus on families who opt for this intervention, leaving much unknown…
Parental advice giving serves as an important form of informational support for parents of children living with complex chronic conditions (CCCs). These messages can provide backchannel insights into social challenges, best practices, and may offer…
BACKGROUND: Bereavement after the death of a child is devastating and associated with worse physical and psychosocial well-being in parents. Evidence suggests that parents desire and benefit from support provided by other bereaved parents. To foster…
Trisomy 13 and 18 (T 13/18) are rare chromosomal abnormalities associated with high morbidity and mortality. Improved survival rates and increased prevalence of aggressive medical intervention have resulted in families and physicians holding…
This study on end-of-life decisions in extremely preterm babies shows that the parents under study experience a multitude of stressors due to the immediate separation after birth, the alienating setting of the neonatal intensive care unit (NICU), the…
OBJECTIVES:
22q11.2 deletion syndrome (22q11DS), a complex genetic syndrome associated with more than 180 features, presents complex challenges for parents including gaining a diagnosis. This phenomenological study sought the "lived" interpretations…
Caring for a child with a chronic condition has received considerable attention in the pediatric health literature. Today, approximately 1 out of 5 North American children are diagnosed with a chronic condition that requires parents to become…
Purpose: Pregnancy and birth is often a joyous period for a dyad. In the instance of fetal death, however, dyads are met with a devastating loss of their child, the hope for the future, and the new reality of becoming a bereaved parent. The purpose…
The aim of this study was to understand children's cancer nurses experiences of providing palliative care in the acute hospital setting. Palliative care for children with cancer is rarely hospital- centred and predominately care is provided in the…
Outcomes 1. Review the limited literature on barriers to provision of pediatric hospice care to children in the community and define the challenge of better equipping community-based hospice nurses to care for pediatric patients 2. Describe outcomes…
