OBJECTIVES: The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which…
Background: Nephropathic cystinosis is an autosomal recessive disease caused by a mutation in the CTNS gene which encodes cystinosin, a lysosomal cystine transporter. The spectrum of mutations in the CTNS gene is not well defined in the North African…
Treating Kaposi sarcoma (KS) in children, adolescents, and young adults (AYA) remains a challenge in low-and middle-income countries (LMIC) where chemotherapy options and availability are limited. We describe a retrospective cohort review of…
Background: Midwives working in settings with limited clinical resources experience high rates of very early neonatal deaths. Midwives manage the impact of this grief and trauma almost daily, which may affect patient care and their own well-being.…
BACKGROUND: In 2020, the International Association for Hospice and Palliative Care redefined palliative care to incorporate the concept of serious health-related suffering. An estimated 21 million children globally live with conditions which would…
A child's illness and admission in a hospital are stressful and can negatively affect the child and his/her caregivers. The stress is further exacerbated when a child is critically ill and has been admitted to an intensive care unit (ICU). The…
Background: Patients with terminal diseases may benefit physically and psychosocially from an outpatient palliative care visit. Palliative care services are limited in Pakistan. An improved understanding of the symptom clusters present in our…
Introduction: The World Health Organisation defines paediatric palliative care (PPC) as caring for the child's body, mind, and spirit, and giving support to the family. In life-limiting conditions it is important that palliative support can be…
OBJECTIVE: To explore doctors' experiences of referring and admitting patients to the intensive care unit (ICU) at two tertiary hospitals in Malawi. DESIGN: This was a qualitative study that used face-to-face interviews. The interviews were…
BACKGROUND: South Asians are one of the fastest growing populations in the US. Family based decision making is common among this population. Little is known about their knowledge and attitudes towards hospice use. OBJECTIVE(S): This study explored US…
Introduction: 919,000 Rohingya refugees live in overcrowded camps in Cox’s Bazar, Bangladesh after fleeing violence in Myanmar. The Médecins Sans Frontières (MSF) Goyalmara Hospital offers the highest level of pediatric and neonatal care serving the…
Worldwide, sub-Saharan Africa has the highest burden of global neonatal mortality (43%) and neonatal mortality rate (NMR): 27 deaths per 1,000 live births. The WHO recognizes palliative care (PC) as an integral, yet underutilized, component of…
Background/aims: Palliative care for children should be provided wherever the child is who needs care, whether that be at home, at school, in a clinic, in a hospital, in a hospice, as well as including in humanitarian settings. It should be provided…
CONTEXT: Of the estimated 21 million children world-wide who need access to pediatric palliative care (PPC), about 97% currently reside in low-and middle-income countries (LMIC). Access to PPC programs in LMIC are limited, and successful strategies…
INTRODUCTION: The Médecins Sans Frontières (MSF) Goyalmara Hospital in Cox's Bazar, Bangladesh is a referral centre offering the highest level of care available in the Rohingya camps for pediatrics and neonatology. Efforts are underway to integrate…
Background/aims: Of the estimated 21 million children world-wide who need access to pediatric palliative care (PPC), about 97% currently reside in low-and middle-income countries (LMIC). Access to PPC programs in LMIC are limited, and successful…
Palliative care as a system is presented in Russia for a little over 10 years. Moreover, such care in every region has its own local-specific scheme and infrastructure. This article presents the results the analysis of palliative care state and…
Hospice care plays a vital role in providing compassionate and holistic support to terminally ill patients and their families. While hospice care has gained recognition and acceptance globally, its implementation and understanding in the context of…
Objective To describe the development and implementation of a 1-year 'Hybrid' Pediatric Palliative Care (PPC) Fellowship, which includes both clinical and online learning to train paediatricians as specialists and leaders in paediatric palliative…
AIMS AND OBJECTIVES: To report the views and experiences of fathers following their child's diagnosis of an intellectual and developmental disability (IDD)., BACKGROUND: There is a growing interest in understanding the experiences of fathers of…
When a child has a life-limiting illness, parental involvement is amplified, having to respond to the increased needs of the child. Both parents are affected by the illness, yet research has largely under-represented fathers' experiences of their…
Non-invasive prenatal testing (NIPT) allows early, accurate diagnosis of Down syndrome that has resulted in increased terminations. This qualitative study involved in-depth interviews of fathers of children with Down syndrome about their views on the…
BACKGROUND: An in-depth exploration of the experience of midlife fathers of developmentally disabled young adults (aged 19-32 years) was motivated by a dearth of research in this area (McKnight, PsyPAG Quarterly, 94, 2015, 10)., METHOD: Five fathers…
AIMS AND OBJECTIVES: The aim is to present the development and implementation of a bereavement follow-up intervention for grieving fathers. The development and implementation process and components of the intervention are presented., BACKGROUND:…
BACKGROUND: Fathers' interactions with children who have intellectual disabilities (ID) or developmental delays (DD) have increased over the past few decades and may be expected to continue to increase as maternal and paternal roles, along with other…
Research has focused heavily on mother's experiences of children with life-threatening illnesses. In contrast, fathers' experiences, especially among minorities, are scarcely discussed. This study examined the experiences of 15 fathers as primary…
We assessed the sampling performance of research on parental perspectives in pediatric palliative care and examined if and how gender imbalance was treated. We undertook a systematic review of parental perspectives research in pediatric palliative…
OBJECTIVE: This qualitative study aimed at understanding the experiences of fathers of very ill neonates in the NICU., METHODS: Sixteen fathers of very ill and/or very preterm infants who had been in the NICU for >30 days were interviewed by a male…
This qualitative study used focus groups to identify the differences and similarities in the experiences of parents of children with a disability. Two main themes emerged, showing the ways in which the mothers and fathers are alike or different. One…
BACKGROUND: Historically, research exploring the impact of having a child with an Intellectual Disability (ID), has focussed exclusively on mothers. The present study aimed to investigate fathers' experiences of parenting a child with Down's syndrome…
BACKGROUND: The aim of this study was to explore and describe the coping experiences of parents to children admitted to a neonatal unit., METHODS: A qualitative research approach was chosen, using in-depth interviews with eight fathers and eight…
Background: Being a parent of a child with a developmental disability (DD; e. g., cerebral palsy, autism) comes with great challenges and apprehensions. Mothers and fathers of children with DD are experiencing heightened levels of psychological…
"Losing Thomas & Ella" presents a research comic about one father's perinatal loss of twins. The comic recounts Paul's experience of the hospital and the babies' deaths, and it details the complex grieving process afterward, including themes of…
Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A…
BACKGROUND: There is a growing body of qualitative studies examining parents' experiences of caring for a child with a life-limiting condition, coinciding with recent evidence that indicates an increasing incidence of paediatric life-limiting…
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: Children with a life-limiting condition often require extensive and complex care, much of which is provided by their parents at home. There is a growing body of research that aims to understand the experiences of these parents, but the…
Objectives
Systematic reviews (SRs) are considered the gold standard of evidence, but many published SRs are of poor quality. This study identifies how librarian involvement in SRs is associated with quality-reported methods and examines the lack of…
Background: Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning…
BACKGROUND: Palliative care (PC) provides numerous benefits for children with cancer. Pediatric patients with high-grade glioma (HGG) are particularly well suited for early PC involvement given their high symptom burden and poor prognosis. However,…
