OBJECTIVE:
The disclosure of a diagnosis during pregnancy of a fetal malformation, which is incompatible with life, normally comes completely unexpectedly to the parents. Although a body of international literature has considered the topic, most of…
In paediatric palliative care (PPC), parents are confronted with increasing caregiving demands. More children are cared for at home, and the need for PPC of children is lengthened due to technical and medical improvements. Therefore, a clear…
By employing the phenomenographic approach, the present study explored children's cognitive understanding of and emotional responses to death and bereavement. Participants included 52 Korean, 16 Chinese, and 16 Chinese American children ages 5-6.…
Background: Parents of children with a life-limiting disease have to rely on themselves at home while adequate paediatric palliative care is lacking. In several countries, paediatric palliative care teams are introduced to ensure continuity and…
This study seeks to explore the potential implications of Facebook use in the process of maternal grief. The participants were 11 women who had lost their children due to accidents or prolonged illness. Semistructured interviews were conducted and…
Background: Despite the number of interprofessional team members caring for children at the end of life, little evidence exists on how institutions can support their staff in providing care in these situations. Objective: We sought to evaluate which…
This paper reports on a study that examined the grief and coping of 29 parents whose child has hypoplastic left heart syndrome using the Dual Process Model. The study employed a secondary thematic analysis of interviews at key times of treatment and…
AIM: The aim of this study was to seek views of UK children's and adult hospices on the availability and challenges of providing services for young adults with life-limiting conditions. BACKGROUND: Internationally, there are a growing number of young…
Loss of a child from a multiple birth pregnancy is not uncommon yet the idiographic experience of parents who have lost a single twin from a multiple birth pregnancy is underexplored. This novel study sought to explore the experiences of mothers…
Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health…
Background: Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care. Aim: To identify resources on…
Background: Medical advances have led to new challenges in decision-making for parents of seriously ill children. Many parents say religion and spirituality (R&S) influence their decisions, but the mechanism and outcomes of this influence are…
Introduction: Family conferences between parents of critically ill children and health care providers in the pediatric intensive care unit (PICU) serve an important role in family centered care. Many family conferences include palliative care…
Background: Globally, an estimated eight million children could benefit from palliative care each year. Effective communication about children with life-limiting conditions is well recognized as a critical component of high-quality pediatric…
Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital.…
Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements,…
Objectives To provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care…
Study objective: Children with medical complexity represent a fragile population and account for the majority of patients followed in pediatric palliative care. Little is known in regard to the role of the emergency department (ED) in caring for the…
BACKGROUND: Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare…
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: and aim Palliative Care for Children is defined as 'an active and total approach to care, from the point of diagnosis or recognition throughout the child's life, death and beyond'. It is recognised that the prevalence of children with…
Hospice has been pivotal to children's palliative care provision in the United Kingdom (UK) for more than 3 decades. Some hospices have recently expanded to include care of infants transferred from neonatal units as well as antenatal referrals.…
BACKGROUND: Pediatric palliative care programs aim to improve the quality of life of children with severe life-threatening illnesses, and that of their families. Although rehabilitation and physical therapy provides a valuable tool for the control of…
OBJECTIVE: This is the first known study which examines the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from the time of providing care to their child through bereavement.…
Objective: Quality of Life (QoL) is the core of pediatric palliative care (PPC). The evaluation of QoL allows the adjustment of patient care. However, it remains difficult for clinicians to measure it in this population because there is very little…
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…
Objective: To describe the experiences lived by mothers facing the death of their children. Method: A qualitative, exploratory and descriptive research conducted in Guarapuava-PR, with six participants of the "Marias" group that brings together…
This study was conducted to determine neonatal intensive care unit (NICU) nurses' opinions about the palliative care needs of neonates with multiple congenital anomalies. The study sample consisted of the 20 nurses who agreed to participate in the…
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…
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…
Technology-dependent children are a sub-population of seriously ill children with life-limiting conditions who are being cared for at home by their families. Although home-based care has been the model of care for these children since the late 1980s,…
This exploratory study targets a significant gap in the lactation and bereavement literature by exploring bereaved fathers' experiences, perspectives and practices in relation to their partner's lactation after stillbirth, neonatal or infant death.…
An increasing number of children with complex life-limiting and life-threatening conditions are being cared for at home by their parents. Negative impacts on maternal health are now being recognised. This study sought to voice parental experiences to…
Aims: This feasibility study aimed to systematically identify and address the support needs of parents of children with life-limiting illnesses and to assess whether the systematic approach was acceptable and relevant to parents. Method(s): The CSNAT…
Abstract Music therapy (MT) is a widely used non-pharmacological intervention in pediatric health care, an integral part of pediatric palliative care (PPC). Yet, there is a lack of evidence of efficacy, and best practices are not well established.…
The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric…
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…
