Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and…
Kim, aged 3 years, lies asleep, waiting for a miracle. Outside her room, the nurses on the night shift pad softly through the half-lighted corridors, stopping to count breaths, take pulses, or check the intravenous pumps. In the morning, Kim will…
Managing end-of-life care (EoL) is always emotionally taxing. Honest discussions about prognosis and EoL decision-making are often delayed due to questions about the legal competence of adolescents and young adults (AYA) to make decisions for…
BACKGROUND: Parents of children admitted to neonatal and pediatric intensive care units (ICUs) are at increased risk of experiencing acute and post-traumatic stress disorder. The integration of palliative care may improve child and family outcomes,…
The aim of this integrative review was to increase knowledge about parents' experiences of palliative care when their child is dying or has died due to illness using Whittemore and Knafl (2005) analysis process. Computerized databases were used to…
OBJECTIVES: To examine the circumstance of death in the PICU in the setting of ongoing curative or life-prolonging goals. DATA SOURCES: Multidisciplinary author group, international expert opinion, and use of current literature. DATA SYNTHESIS: We…
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…
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…
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…
The objective was to know the vulnerabilities experienced by family members/caregivers of children with a chronic. Qualitative research supported by the theoretical framework of the French philosopher Rosello Un which 15 family members/caregivers of…
BACKGROUND: Home care of children with life-limiting diseases is extremely challenging for parents/family caregivers and their social environment. In order to gain new insights into the perspective of family caregivers, we employed digital Network…
Background: The care of pediatric patients with cancer and their families is complex and evolving. Despite significant advances in outcomes, symptoms of disease and complications of therapy continue to cause pain and other symptoms that could be…
We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal…
The phenomenon of post-traumatic growth has been explored within the context of HIV disease in only a limited fashion. One hundred and seventy-six bereaved HIV/AIDS carers located all over Canada responded to a questionnaire about their experiences;…
Background: Although palliative care (PC) communication skills can be learned through trial and error, pediatric fellows have few opportunities to practice communication, and learning by doing may be harmful for families. Despite these issues and…
In most industrialized countries today, the death of a child is a rare phenomenon. When it occurs, however, it is usually within a hospital setting, after the child has received complex and often long-term medical care aimed at curing or controlling…
A taxonomy of the things that help and hinder adolescents' sibling bereavement was developed from the responses of 140 bereaved adolescents to the questions What helped you cope with your sibling's death? and What made it harder to cope with your…
Despite the continuous improvement of pediatric palliative care, medical professionals still face various barriers regarding its implementation; our aim was to investigate this question in Hungarian pediatric oncology practice. Structured interviews…
PURPOSE: This paper presents the components of a pediatric palliative care demonstration program implemented in Seattle during the period 1999-2001. It reports findings from the evaluation of quality of life and family satisfaction among enrolled…
Pediatric palliative care (PPC) is a set of actions aimed at children who suffer from a severe or life-threatening disease to alleviate the symptoms of the disease and improve the quality of life of both the child and his/her family. One of the tools…
In palliative care, we strive to provide care to the whole patient. When we think about the whole patient, we include the people who are important in our patients' lives. Our New York City-based palliative care team has found that caring for…
In Portugal, there are over 7800 children with life-limiting conditions. The context of pediatric palliative care represents a complex and distressing experience for families. Compared to parental caregivers and healthy siblings, grandparents are…
BACKGROUND: Caring for the bereaved is an intrinsic part of intensive care practice with family bereavement support an important aspect of the nursing role at end of life. However, reporting on provision of intensive care family bereavement support…
The aim of this paper is to present findings concerning a variety of factors expected to influence, either directly or indirectly as mediators, the psychological well-being of persons caring for a dementing relative in the community. The sample…
OBJECTIVE: To reveal the experience of family members after learning their child would adopt palliative care., METHOD: Phenomenological research on Heidegger's perspective. The participants were eleven family members of children who were recommended…
Over 200,000 patients are admitted into pediatric intensive care units (PICU) annually in North America, exposing families to extreme psychosocial stressors and adverse outcomes. While previous research has shown PICU patients and their parents…
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…
Telehealth is defined as the provision of health care via telecommunications wherever individuals are geographically separated. In this literature review, we explore the role of telehealth in family care. Telehealth has not been fully examined for…
Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect…
Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect…
The emergence of efficacious human gene therapy for life-limiting genetic diseases such as spinal muscular atrophy type 11 has raised hopes among families of children with previously incurable genetic disorders. However, a number of concerns have…
The sudden, unexpected death of a child (SUDC) is a devastating experience. It is vital that supportive and investigative services are effective and promote the best outcomes for families. Analysis of 5 years of data from 309 SUDC cases in Greater…
The children's palliative care sector requires a specific set of knowledge and skills in its workforce. Maintaining high levels of competence and leadership can be challenging if staff move out of the sector, retire or several key people leave.…
