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Parents of children with non-malignant life-limiting conditions frequently accept roles that exceed the conventional activities of parenting in relation to the intensity, complexity and temporal nature of the family caregiver experience. This paper…
INTRODUCTION: Most children with medical complexity have to live with home mechanical ventilation (HMV). Undertaking the care of a child with HMV creates a psychosocial burden on parents. This study investigated the impact of selected potential…
BACKGROUND: The aim of this study was to explore and clarify the healthcare service utilization of children dependent on medical technology (CMT), and the parental health-related quality of life (HRQOL). METHODS: Participants recruited the primary…
BACKGROUND: Bereaved parents experience life-long grief after the death of their child from cancer. Parents who can integrate their grief and maintain their social functioning early in bereavement, even in the setting of concurrent psychosocial…
Background: Cancer is still the leading cause of non-accidental death in childhood, although the majority of children diagnosed in high-income countries survive their illness. In accordance with international standards, equal and early access to…
Introduction: Palliative care (PC) refers to interventions aimed to improve the quality of life (QoL) of children and their families by the prevention and relief of suffering. The purpose of this study was to explore the knowledge and views of…
Parents of children with cancer provide paediatric palliative care (PPC). However, the activities they perform remain underexplored, especially in low- and middle-income countries (LMICs) where the care heavily relies on family involvement. The aim…
AIM: To qualitatively assess the impact of disability-based discrimination in healthcare on the parents of children with medical complexity (CMC)., METHOD: In this qualitative study, we conducted in-depth, semi-structured interviews with the parents…
BACKGROUND: Parents often perceive the news that their child has cerebral palsy (CP) as overwhelming and shocking. They are at increased risk of parental stress and mental health problems, which in turn can affect the interaction between the parent…
Background: Since 2017, terminally ill parents with dependent children under the age of 18 have been able to record an audiobook for their dependent children. This service allows them to narrate how they would like to be remembered in their voice.…
BACKGROUND: Parents of children with neurodevelopmental disorders often experience heightened levels of parenting stress and diminished well-being. However, less is known about the well-being of parents whose children exhibit symptoms of…
BACKGROUND: Children with invasive mechanical ventilation (IMV) often live at home, but for safety, parents must be prepared to assume primary responsibility for all aspects of their child's medically complex care. Prior studies have described…
Background: Pediatric palliative care (CPP) is defined as active and holistic care of the child's body, mind and spirit, actively supporting the centrality and role of the family. They have as their primary objective the improvement of the quality of…
AIM: To develop a family-centred end-of-life care protocol and evaluate its feasibility. DESIGN: The draft protocol was created by integrating literature review results and existing protocols and interviewing bereaved parents. A Delphi study and an…
Background: The prevalence of complex chronic conditions (CCC), which cause serious limitations and require specialized care, is increasing. The diagnosis of a CCC is a health-illness transition for children and their parents, representing a…
Background: Infants and families requiring neonatal intensive care unit (NICU) care often experience significant stress and trauma during the earliest period of the infant's life, leading to increased risks for poorer infant and family…
The untimely death of a child is an incredibly traumatic experience for parents and their loved ones. It uproots every aspect of their life, leading the bereaved parents to be far more likely to have poorer physical and mental health outcomes. This…
The diagnosis of a child’s complex chronic illness may impact family relationships and cohesion. The Impact on Family Scale (IFS) is an instrument used to assess the parental perception of the effects of children’s chronic illness on family life.…
Background: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric…
Abstract Background: Evidence to guide intrapartum care when an unborn baby has died is limited. Aims: To explore parents' experiences of care during labour of an antepartum stillbirth. Materials and methods: Semi-structured interviews with 18…
BACKGROUND: Pediatric palliative care (PPC) seeks to enhance the quality of life (QoL) for both children and their families. While most studies within PPC have focused on the ill child's QoL, less is known about parents' experiences of their own QoL.…
Recent years have seen a shift in the number of bereavement studies examining daily grief processes, but our knowledge is still limited due to the lack of dyadic research. In this paper, we explored the change in mental health in the course of a…
Abstract This study addresses research gaps regarding the impact of professional bereavement photography for perinatal loss. Utilizing a mixed-methods research design, 504 parents completed an online survey measuring their attitudes toward…
Abstract Health anxiety by proxy is a newly described phenomenon where parents worry excessively that their child suffers from a serious illness. In a former study, six parents with distressing worries about their child's health were interviewed to…
BACKGROUND: There is a lack of knowledge regarding siblings' experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings' perspectives are often expressed through their parents and not by siblings…
This study investigated the association between prolonged grief (PG) severity and meaning-making narration in a cross-cultural context, and specifically aimed to illustrate the role of value orientation in shaping the grieving process. 30 Chinese and…
Shared decision-making (SDM) with parents and adolescents is normative in pediatric practice in North America. In this article we discuss how it is applicable to the practice of pediatric palliative care (PPC). As PPC itself is exemplary of…
Background: The diagnosis of a life-limiting condition of a child in the perinatal or neonatal period is a threat to parental hopes. Hope is an interactional and multidimensional construct, and in palliative care, it is a determinant of quality of…
Purpose: Pregnancy and birth is often a joyous period for a dyad. In the instance of fetal death, however, dyads are met with a devastating loss of their child, the hope for the future, and the new reality of becoming a bereaved parent. The purpose…
The changes that parents face when caring for a child with a life-limiting condition at home can affect them on a spiritual level. Yet, indications remain that parents do not feel supported when dealing with spiritual issues related to caring for a…
Objective: The one-child policy has existed in China for more than 30 years. It brought benefits to the country's economic development and reduced the magnitude of the population within a short period. However, it has led to the emergence of a…
Context Bereaved parents may have heightened risk for decisional regret; however, little is known about regret early in bereavement. Objectives We characterized decisional regrets endorsed by parents of children who died from cancer within the first…
BACKGROUND: Exploring the experience and understanding of death in children with terminal cancer is important to provide them with appropriate care. However, most studies have focused on the perspectives of parents and healthcare professionals, and…
OBJECTIVES: This systematic review aimed to determine the content, mode of delivery, assessment, and outcomes of educational interventions to equip health and social care professionals (HSCPs) when delivering end-of-life (EoL) supportive care for…
AIM: To systematically review and synthesize findings across qualitative primary studies about fathers' experiences of living with a child with a progressive life-limiting condition without curative treatment options (C3 conditions). DESIGN:…
OBJECTIVES: To explore the perceptions of parents caring for a child with a life-limiting condition on approaches to communication used by clinicians engaging in routine serious illness communication. METHODS: An exploratory qualitative design was…
BACKGROUND: Paediatric palliative care (PPC) aims to improve children's quality of life, but this outcome is rarely measured in clinical care. PPC is provided in Belgium through six transmural paediatric liaison teams (PLTs) ensuring continuity of…
BACKGROUND: The Chochinov Dignity Model was developed based on a cohort of adult patients with advanced cancer, but its role among dying children is not clear. This study aims to develop a model of dignity for children receiving pediatric palliative…
