This paper explores the challenges of resolving conflicting feelings around talking with a child about their terminal prognosis. When children are left out of such conversations it is usually done with good intent, with a parent wishing to protect…
OBJECTIVE: To explore recipients' perspectives on the range and origins of their emotional experiences during their 'bad news' consultations., METHODS: Participants were four bereaved families of children who had changed from active treatment to…
Objective In English paediatric practice, English law requires that parents and clinicians agree the ‘best interests’ of children and, if this is not possible, that the courts decide. Court intervention is rare and the concept of best interests is…
Death of an infant is acutely stressful for parents and professionals. Little is known about junior nurses' experiences providing end-of-life care in Neonatal units (NNU). This study aimed to better understand junior nurses' experiences providing…
Parents have a significant role in the management of a child's chronic condition. Parents are often the only consistent individuals managing a child's health across his or her childhood and adolescence (e.g., present for all appointments and medical…
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…
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.…
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…
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…
INTRODUCTION: Adequate communication by medical personnel is especially important at certain points during the treatment of childhood cancer patients. AIM: To investigate the timing and manner of communication with parents concerning the introduction…
AIMS: In France, most of children die in the hospital. This national survey aimed to achieve better understanding of end-of life care in specialized medical pediatrics departments for children facing the end-of-life, identify the available resources,…
INTRODUCTION: In France, 26 regional pediatric palliative care teams (ERRSPP) were created between 2008 and 2012. We conducted the first prospective French study to describe the main specifications of the initial contact with an ERRSPP and to analyze…
OBJECTIVES: The benefits of non-invasive ventilation (NIV) have been clearly demonstrated in pediatrics. In palliative care, NIV can improve the level of comfort and quality of life and can decrease dyspnea. The objective was to survey pediatricians'…
The loss of a close friend or relative is always an ordeal. When this loved one is a baby, born or even unborn, a number of specific aspects have been reported by parents and researchers. The specificities of perinatal mourning have been…
Introduction: Subcutaneous hydration (hypodermoclysis) and drug administration is a widely used method of analgesic therapy in adult palliative care medicine. Very little is known about its use in neonatal medicine. Evidence-based guidelines do not…
OBJECTIVE: Our aims were to report an analysis of the concept of cultural competency and to explore how the cultural competency of the palliative care workforce impacts the holistic care of young people with palliative care needs from South Asian…
Introduction: The birth of an extreme preterm infant often comes unexpectedly. Decisions, then, must often be made quickly and under circumstances that can be emotionally stressful for parents or morally burdensome for health care professionals. In…
BACKGROUND: Communication with parents about end-of-life care and decisions is a difficult and sensitive process. The objective of the present study was to ascertain clinicians' views on the acceptability and usefulness of a handbook and web-based…
Pain is a significant public health problem that affects all populations and has significant financial, physical and psychological impact. Opioid medications, once the mainstay of pain therapy across the spectrum, can be associated with significant…
AIM: Medical providers may face unique emotional challenges when confronted with the suffering of chronically ill, dying, and bereaved children. This study assessed the preliminary outcomes of participation in a group-based multimodal mindfulness…
This study was an exploratory inquiry into the role of music therapy for pre-bereaved informal hospice caregivers. Pre-bereavement has been an area of increased scholarly and clinical focus across multiple healthcare fields over the past decade, and…
In spite of growing bereavement literature, the meaning of the lived experience of parental bereavement is not well understood. This article presents selected findings from a Heideggerian hermeneutic phenomenological study which aimed to describe the…
Perinatal palliative care allows for an active partnership among a pregnant woman, her family, and her multidisciplinary treatment team and addresses her specialized medical care, emotional, social, and familial needs when a life-limiting fetal…
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…
BACKGROUND: Bereavement support is a core tenet of palliative care that may prove difficult for clinicians as it is time-consuming, emotionally charged, and not emphasized in pediatrics training. This project is intended to describe the opinions,…
The objective of this study is to determine if pediatric advance care planning (pACP) increases adolescent/family congruence in end-of-life (EOL) treatment preferences longitudinally. Adolescents aged 14-21 years with HIV/AIDS and their families were…
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.…
The present study aimed to increase the knowledge about Wolf-Hirschhorn syndrome (WHS), especially concerning motor function, autism spectrum disorders (ASD), and adapted behavior, but also regarding clinical symptoms in general. Motor function was…
Background: Although there are many studies that explore complicated grief, no studies have examined the impact of bereavement support services on the progression to complicated grief. The aims of our study were to describe the types of bereavement…
Aim: The symptoms of Huntington's disease are well known, yet the symptoms of juvenile Huntington's disease (JHD) are less established due to its rarity. The study examined a cluster of symptoms considered to be common, but under-recognized in JHD:…
Background: Pulmonary arterial hypertension (PAH) is a terminal disease that can be diagnosed in children and adults. Adverse effects of treatment combined with a terminal illness can lead to a plethora of unmet patient needs that can be addressed by…
End of life care policy in the UK advocates open discussions between health professionals and patients as the end of life approaches. Despite well documented understanding of the progression of life-limiting neuromuscular diseases, the majority of…
PURPOSE: Adolescents and young adults (AYA) with cancer are a cohort requiring specialized healthcare models to address unique cognitive and physical challenges. Advance care planning (ACP) discussions likely warrant age-appropriate adaptation, yet,…
Objective To evaluate current attitudes and barriers to advance care planning for adolescent patients with life-threatening conditions among paediatric neurologists. Design Cross-sectional study. A self-reported questionnaire was administered to…
Kukora and colleagues report on their single centre study of antenatal palliative care consultation (APCC) and reveal that this practice—though applied in a limited number of cases—contributed to a greater use of postnatal palliative/comfort care…
