The charity Together for Short Lives has launched a campaign to encourage nurses to consider a role in children's palliative care in the voluntary sector, to prevent any further reduction in services for this already vulnerable group.
Purpose: Adolescents and young adults (AYAs) with terminal cancer are a marginalized population with unique medical and psychosocial needs. AYAs commonly report challenges with their health care experiences, however, little is known about the…
PURPOSE: To examine the experiences of parents who are caring for a child with a life-threatening or life-limiting illness (LTI/LLI) including levels of uncertainty, distress, hope, and self-efficacy to determine if there are significant variations…
Background: Case management is a subject of interest within pediatric palliative care. Detailed descriptions of the content of this type of case management are lacking. We aim to describe the contents of care provided, utilization of different…
Abstract Purpose: To understand the experience of nurses caring for infants and children with life limiting and life-threatening conditions. Design and methods: A qualitative phenomenological study was conducted, collecting data through deep…
Pediatric shared decision-making (SDM) is a fundamental part of family-centered care. Pediatric palliative care (PPC) is one of the more difficult fields for healthcare providers when choosing to utilize SDM. However, to our knowledge, there are…
AIMS: To evaluate how nurses cope with the death of a paediatric patient, relate it to the different sociodemographic variables, and to describe personal coping strategies used by nurses in managing the process and accepting the death of the patient.…
Introduction: The high incidence and prevalence of chronic pain in patients with CF is well documented. In patient surveys, reports of intense pain range from 33% - 82% of respondents. Commonly reported sources of pain include headache, sinuses,…
Introduction: For children with cancer, early integration of pediatric palliative care in conjunction with curative treatments is recommended. In Switzerland, pediatric palliative care is mostly provided by an interdisciplinary primary oncology team…
PURPOSE: To explore bereaved parents' perspectives of parent and staff roles in the pediatric intensive care unit when their child was dying, and their relationships with healthcare staff during this time. DESIGN AND METHODS: Constructivist grounded…
Aims & Objectives: Providing family focussed care through lessons learned from bereavement follow-up. Methods RMCH is a tertiary PICU in UK with 750 admissions annually. Families of all patients who die in PICU are offered bereavement follow-up at…
Full text linksCite Abstract Background: Parents of medically complex children hold deeply personal definitions of how to be "good parents" that guide their medical decision making and interactions with providers and are impacted by provider…
Background/Objectives: Bereaved parents during palliative care affects the quality of life of children and family. This research aims to explore parents' experiences caring children with cancer in palliative condition. Design/Methods: The research…
Aims & Objectives: Caring for dying children is complex and requires coordination of all resources. In PICU the main objective is to save lives and ensure vital functions in critically ill children. However due to the child's critical and life…
Abstract
The integration of pediatric palliative care (PPC) should become a standard of care for all children with life-limiting and life-threatening illnesses. There are many barriers and misperceptions in pediatrics which hinder the early…
Objectives: In the context of serious or life-limiting illness, pediatric patients and their families are faced with difficult decisions surrounding appropriate resuscitation efforts in the event of a cardiopulmonary arrest. Code status orders are…
Healthcare providers influence the experiences of families during end of life care and death of a child*. Nurses are best placed to provide bereavement support as they have opportunities to build therapeutic relationships through closely and…
The health care decisions of families of children who have life-limiting genetic diseases are impacted by multiple factors including religious and ethical values, education and knowledge, emotional trauma, availability of support, and accessibility…
Objective: The aim of this study was to explore the experience of community palliative care nurses providing home care to children. Method: A qualitative study was conducted at the 3 community palliative care provider organizations in greater Kuala…
Purpose of study Advances in fetal medicine have increased referrals to tertiary perinatal care centers. NRP guidelines recommend that only neonates with anencephaly and less than. 400 grams are not to be resuscitated. In 2015, Oklahoma passed a law…
OBJECTIVES: Understanding factors influencing quality of pediatric end-of-life (EOL) care is necessary to identify interventions to improve family and staff experiences. We characterized pediatric cardiac ICU (PCICU) staff free-text survey responses…
The study was planned as a descriptive qualitative study to determine the emotional responses of neonatal intensive care nurses to work in the neonatal unit and to neonatal deaths. The sample of the study consisted of 7 nurses who work at the…
Background: In 2018, >75,000 children were newly affected by the diagnosis of advanced cancer in a parent. Unfortunately, few programs exist to help parents and their children manage the impact of advanced disease together as a family. The Enhancing…
OBJECTIVES: The present study aims to determine the attitudes of care providers including obstetricians, paediatricians and midwives working in perinatal, obstetric and neonatal intensive care unit (NICU) wards of the selected teaching hospitals in…
Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus…
Family care is essential to pediatric nursing practice, as the entire family is affected by childhood illness. However, little is known about art making for therapeutic purposes and how art is used to better understand families' experiences. Our…
BACKGROUND:: Studies involving samples of children with life-threatening illnesses and their families face significant challenges, including inadequate sample sizes and limited diversity. Social media recruitment and Web-based research methods may…
Neonatal nurses in mainland China encounter various challenges when it comes to delivering palliative care to neonates. The aim of this study was to determine the barriers and facilitators of neonatal nurses' attitudes to palliative care for neonates…
Background: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's…
Background Children with life-limiting conditions are living longer, so relationships between nurses and families can span decades (Maunder 2013)2. Although long-term relationships between nurses and children/families in paediatric palliative care…
Background Supporting siblings following loss of an infant is increasingly recognised as an important aspect of neonatal bereavement support. The grief process in children is often complicated by feelings of loss, guilt as well insecurity about their…
OBJECTIVE: This study aims to assess the knowledge and attitude of nurses toward pediatric palliative care (PPC) and examine the impact of an educational program on pediatric nurses' knowledge and attitude regarding PPC for children facing…
Objective: To compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers. Design: A qualitative case study method using semistructured…
Aims & Objectives: 60% of children admitted to RMCH PICU might benefit from palliative care (previous case review). Co-coordinating and maintaining continuity of care in these children with multi-speciality input is challenging. Weekly Multi…
Background: Community hospitals represent a unique setting to provide pediatric palliative care (PPC), given their usual proximity to a patient's home. Texas Children's Hospital, TheWoodlands (TCH-TW) is a community-based campus that opened in April…
Spiritual care is an essential domain of pediatric palliative care. The current mainland China faces a lack of national guidance and a shortage of specialized personnel to provide spiritual care in a traditional developing country. Objectives: To…
Education is integral to the development of children's palliative care (CPC) globally; thus, the International Children's Palliative Care Network (ICPCN) developed a training programme including face-to-face and e-learning programmes to increase…
The use of a palliative care guideline in infants remains controversial in the NICU community. Triggers are only intermittently utilized within the NICU setting. Most NICUs implement strategies for near-death care, but few have guidelines for those…
BACKGROUND: The establishment of paediatric hospices improves the quality of care of paediatric nurses. AIM: To examine the effect of establishing paediatric hospices on the quality of care of paediatric nurses. METHOD(S): Data was collected between…
